The Surgeon General's
Workshop on

INCREASlhlG ORGAN
DONATION

BACKGROUND PAPERS

Washlngton, DC.
July 8-lo.1991

US. DEPARTMENT OF
HEALTH & HUMAN SERVICES
PubNc Health Setvice


           
ACKNOWLEDGEMENTS

The Surgeon Geqeral's Workshop on Organ Donation was supported by the Division
of Organ Transplantation, Bureau of Health Resources Development, Health Resources
and Services Administration.

Veretta W. Blake was a much valued consultant to the Divi-
sion of Organ Transplantation, bringing courage and
inspiration to the many lives she touched. Her contribution
to the planning and conduct of this workshop was invalu-
able. Ms. Blake died on January 5, 1992. She will remain
an inspiration.to her colleagues and friends and she will be
dearly missed:

All material in this volume is in the public domain and may be used or reproduced
without permission from the Office of the Surgeon General, the Division of Organ
Transplantation, or the authors. Citation of the source is appreciated,

The opinions expressed herein are the views of the authors and participants and do
not necessarily reflect the official position of the Office of the Surgeon General, the
U.S. Public Health. Service, the Health Resources and Services Administration, or any
other agency of the U. S. Government.

ii


FOREWORD

The July 1991 Surgeon General's Workshop on Increasing Organ Donation was a
response to the critical need for a comprenehsive effort to save the lives of thousands
of Americans waiting for donor organs to become available. While. many concerned
individuals and organizations have implemented numerous efforts to increase
donation, the need for donor organs continues to exceed their availability. Seven
expert panels of workshop participants focused their collective energies and
knowledge to propose recommendations and strategies for resolving this perplexing
dilemma.

The background papers in this volume, written by some of the leadng experts in the
field of transplantation, were prepared specifically for the workshop. .Collectively the
authors have presented statelof-the-art information on numerous topics that affect
donation. Recommendations and proceedings of the workshop are presented in a
companion document.

It is my sincere hope that the efforts of these authors, the workshop participants, and
the activities of all those in the transplantation field who are fighting for this important
cause will soon begin to show the positive results that are so vitally needed.

Antonia C. Novello, M.D., M.P.H.
Surgeon General


Federal Participants

WORKSHOP COORDINATING COMMITTEE

Antonia C. Novello; M.D., M.P.H., Surgeon General, U.S.
Public Health Service

Judith B. Braslow, Director, Division of Organ Transplantation,
Bureau of Health Resources Development, Health Resources and
Services Administration

Mary L. Ganikos, Ph.D., Chief, Public and Professional
Education Branch, Division of Organ Transplantation, Bureau of
Health Resources Development, Health Resources and Services
Administration

Margaret D. Garikes, Executive Assistant to the Surgeon
General, Office of the Surgeon General, Public Health Service

Dushanka Kleinman, D.D.S., Special Assistant to the Surgeon
General, Office of the Surgeon General, Public Health Service

Gwen Mayes, MMSc, CPTC, Public Health Analyst, Operations
and Analysis Branch, Division of Organ Transplantation, Bureau
of Health Resources Development, Health Resources and
Services Administration

; Car ultant:
2    Veretta Blake, Liver Transplant Recipient

OFFICE OF THE SURGEON GENERAL

Antonia C. Novello, M.D., M.P.H., Surgeon General, U.S.
Public Health Service

iv


0. Marie Henry, R.N., D.N.Sc., Deputy Surgeon General

Rice C. Leach, M-D,, Chief of Staff

Mary Jane Fingland, Director of Public Affairs

Margaret D. Garikes, Executive Assistant to the Surgeon
General

Dushanka Kleinman, D.D.S., Special Assistant to the Surgeon
General

    DIVISION OF ORGAN TRANSPLANTATION
BUREAU OF HEALTH RESOURCES DEVELOPMENT
HEALTH RESOURCES AND SERVICES ADMINISTRATION
DEPARTMENT OF HEALTH AND HUMAN SERVICES

Judith B. Braslow, Director

Jon Nelson, Deputy *Director

Remy Aronoff, Chief, Operations and Analysis Branch

Veretta Blake, Consultant, Public and Professional Education
Branch

Joyce Brown, Public.Health Analyst, Public and Professional
Education Branch

Mary L. Ganikos, Ph.D., Chief, Public and Professional
Education Branch

Philomena Green, Public Health Analyst, Operations and
Analysis Branch

Vera Lake, Public Health Analyst, Public and Professional
Education Branch

V


Gwen Mayes, MMSc, CPTC, Public Health.Analyst, Operations
and Analysis Branch

OFFICE OF COMMUNICATIONS AND INFORMATION
      RESOURCES MANAGEMENT

BUREAU OF HEALTH RESOURCES DEVELOPMENT
HEALTH RESOURCES AND SERVICES ADMINISTRATION
DEPARTMENT OF HEALTH AND HUMAN SERVICES

Dorothy M. Bailey, Chief, Resources Information Branch

Patricia Delaney, Senior Public Health Analyst, Resources
Information Branch

    OFFICE OF PROGRAM DEVELOPMENT
BUREAU OF HEALTH RESOURCES DEVELOPMENT
HEALTH RESOURCES AND SERVICES ADMINISTRATION
DEPARTMENT OF HEALTH AND HUMAN SERVICES

Emily Haley, Director

Allison A. Hammond, RN, Legislative Analyst, Senior Assistant
Nurse Officer

   OFFICE OF SCIENCE AND EPIDEMIOLOGY
BUREAU OF HEALTH RESOURCES DEVELOPMENT
HEALTH RESOURCES AND SERVICES ADMINISTRATION
DEPARTMENT OF HEALTH AND HUMAN SERVICES

Larry Wannemacher, Senior Public Health Analyst

vi


List of Participants

Patricia Aiken-O'Neill, JD, President/CEO, Eye Bank Association of America, Inc.,
Washington, DC

Vicki L. Albright, MPH, Director, Teens for Transplant; LifeGift Organ Donation
Center, Houston, TX

J. Wesley Alexander, MD, ScD, Professor of Surgery, University of Cincinnati,
Cincinnati, OH

Elaine Bratic Arkin, Health Communications Consultant, Arlington, VA

Nancy L. Ascher, MD, PhD, Professor of Surgery, University of California, San
Francisco, CA

Charles Atkin, PhD, Department of Communications, Michigan State University,
East Lansing, Ml

Leonard Lee Bailey, MD, Professor of Surgery, Loma Linda School of Medicine,
Loma Linda, CA

Ashley Baquero, MD, Transplant Surgeon, Schumpert Medical Center, Shreveport,
LA

Jesse B. Barber, MD, Neurosurgery Department, D.C. General Hospital,
Washington, DC

Christopher R. Blagg, MD, Executive Director, Northwest Kidney Center, Seattle,
WA

R. Randal Bollinger, MD, PhD, Chief, Surgical Transplantation, Duke Medical
Center, Durham, NC

Wanda W. Bond, Director of Communications, UNOS, Richmond, VA

Lori E. Brigham, MBA, Executive Director, Washington Regional Transplant
Consortium, Washington, DC

Charles Brown, Director of Public and Patient Services, National Kidney
Foundation, Atlanta, GA

vii


Brian A. Broznick, CPTC, Director. Pittsburgh Transplant Foundation, Pittsburgh,
PA

Clive 0. Callender, MD, FACS, Director, Transplant Center, Howard University
Hospital, Washington, DC

Arthur L. Caplan, PhD, Director, Center for Biomedical Ethics, University of
Minnesota, Minneapolis; MN

Jorge Chapa, PhD, Professor, LBJ School of Public Affairs, University of Texas,
Austin, TX

James F. Childress, PhD, Professor of Religious Studies, University of Virginia,
Charlottesville, VA

Hester Clark, RN, Golden State Regional Organ Procurement Agency, Sacramento,
CA

David J. Cohen, MD, Medical Director, Renal Transplantation, New York, NY

Elias &. Cohen, J.D., Community Services Institute, Narbeth, PA

Sandra E. Conradi, MD, Associate Professor of Pathology and Laborabory
Medicine, University of South Carolina, .Charleston, SC

Maggie Coolican, RN, MS, Donor Mother, East Hampton, CN

Jeptha W. Dalston, PhD, Chief Executive Officer, Hermann Hospital, Houston, TX

Mary Beth Danneffel, RN, BSN, Executive Director, Sierra Regional Eye and Tissue
Bank, Sacramenta, CA

John Davis, Executive Director, National Kidney Foundation, New York, NY

Rebecca J. Davis, MS, CPA, Executive Director, LifeGift Organ Donation Center,
Houston, TX

William DeJong, PhD, Lecturer, Harvard School of Public Health Boston, MD

John A. Del Gatto, Executive Director, MOTRAIN, Inc., Manhattan Beach, CA

Margaret F. Devney, RN, MSN, Transplant Coordinator, California Transplant Donor
Network, San Francisco, CA

. . .
VIII


Joan L. Di Costanzo, MEd, Elementary School Teacher, Rockville, MD

Eunice Diaz, MS, MPH, .Health Care Consultant, Cerritos, CA

Luz Diaz-Schreiber, BS, MA, Family Services Coordinator, Regional Organ
Procurement Agency of Southern California, Los Angeles, CA

Arnold G. Diethelm, MD, Professor and Chairman, Department of Surgery,
University of Alabama at Birmingham, Birmingham, AL

Ronald L. Dreffer, BS, CPTC, Executive Director, Ohio Valley Organ Procurement
Center, Cincinnati, OH

Stephen P. Dunn, MD, St. Christopher's Hospital for Children, Philadelphia, PA

Isabel (Liz) P. Dunst, JD, Hogan and Hartson (Lawyer), Washington, DC

Barbara Elick, RN, BSN, President, Chief Transplant Coordinator, Transplant Center,
University of Minnesota, Minneapolis, MN

M,ichael J. Evanisko, Partnership for Organ Donation, Boston, MA

Roger W. Evans, PhD, Research Scientist, Battelle Human Affairs Research
Centers, Seattle, WA

Richard N. Fine, MD, Professor and Chair of Pediatrics, State University of New
York, Stoney Brook, NY        '

M. Roy First, MD, President, Chief Transplant Coordinator, Transplant Center,
University of Maryland, College Park, MD

Vicki S. Freimuth, PhD, Associate Professor, Department of Communication,
University of Maryland, College- Park, MD

Frederick N. Griffith, President, CEO, Tissue Bank International, Baltimore, MD

William E. Harmon, MD, Director, Pediatric Nephrology, Boston Children's Hospital,
Boston, MA

Ellen Heck, MT, MA, Administrative Director, Texas Aeroic Center, Southwestern
University Center, Dallas, TX

Steven D. Helgerson, MD, MPH, Indian Health Service, Epidemiology Program,
Seattle, WA

ix


Vernon Henderson, MD, Staff Surgeon for the Department Surge.ry, University of
California Davis, Oakland, CA

Lowell W. Hooper, Treasurer, National Funeral Directors Association, President
Hooper Funeral Home, President Hooper   Funeral Home, Inverness, FL

Charles L. Hostetter, MD, MPH, San Francisco, CA

Octavia Hudson, PhD, Director of Media Programs, Prevention Resources Center,
Buffalo State College, Buffalo, NY

Louise M. Jacobbi, CPTC, CCTC, Executive Director, Louisiana Organ Procurement
Agency, Metairie, LA

Linda L. Jones, RN, CPTC, CCTC, Co-Director Lifeline of Ohio Organ Procurement,
Columbus, OH

Michael J. Joyce, MD, Associate Professor of Orthopedic Surgery, Metrohealth
Medical Center, Cleveland, OH

Michael P. Kaplan, MD, FACS, Association-Professor of Surgery, Wayne State
University, Harper Hospital, Detroit, Ml

Dean F. Kappel, Chief Executive of Mid-American Transplant Association,
St. Louis, MO

Ronald H. Kerman, PhD, Professor of Surgery, University of Texas Medical School,
Houston, TX

Louis J. Kettel, MD, Vice President for Academic Affairs, Association of American
Medical Colleges, Washington, DC

Karen G. Kuperberg, RN, BSN, CCTC, Nurse Transplant Coordinator, Tallahassee,
FL

Rita Guajardo Lepicier, Director of Hispanic Projects, Educational Enterprises, Los
Angeles, CA

Jackie D. Lynch, Hospital Community Development Specialist, Regional Organ
Bank of Illinois, Chicago, IL

Lin Johnson McGaw, RN, MEd, United Network for Organ Sharing, Richmond, VA

X


J. Raul Magana, PhD, Vice President, BuenaCare, Alta .Med Services Corporation,
Irvine, CA

Daniel Maier, Director, Department of News-and Information, American Medical
Association, Chicago, IL                         

Jerold R. Mande, Legislative Assistant, Office of the Honorable Senator Albert
Gore, Jr., Washington, D.C.

Mark J. Mannis, MD, FACS, Chairman, Eye Bank Association of America, Professor
of Ophthalmology, University of California at Davis, Sacramento, CA

Maxwell J. Mehlman, JD, Director, Law and Medicine Center, Case Western
Reserve University, School of Law, Cleveland, OH

Sharon Mellor, RN, CPQA, Director, Quality Assurance, Children's Mercy Hospital,
Kansas City, MO

Veronica K. Meury, Executive Director, Transplant Recipients International,
Pittsburgh, PA

Edgar L. Milford, MD, Director of Clinical Services, Brigham Women's Hospital,
Tissue Typing Lab, Boston, MA

Luis A. Morales Otero, MD, Puerto Rico Transplant Program, Auxillo Mutuo
Hospital, Hato Rey, PR

Rudolph C. Morgan, Upstate New York Transplant Services, Buffalo, NY

Michelle Morse, RN, MSN, CCRN, Coordinator Medical-Surgical, Nursing Staff
Development, University Hospital of Cleveland, Twinsburg, OH

Jeanne C. Mowe, Executive Director, American Association of Tissue Banks,
McLean, VA

Howard M. Nathan, BS, CPTC, Executive Director, Delaware Valley Transplant
Program, Philadelphia, PA

John F. Neylan, Ill, MD, Medical Director, Renal Transplantation, Emory University
Hospital, Atlanta, GA

Elizabeth Nuckolls, BSN, CPTC, Tennessee Donor Services, Nashville, TN

xi


Donna M. Oiland. Executive Director, .University of Washington Medical Center,
Seattle, WA

Gigi Politoski, Director of Communications, National Kidney Foundation, Inc., New
York, NY

Raymond Pollak, MD, FRCS, FACS, University of Illinois at Chicago, Department of
Surgery, Division of Transplantation, Chicago, IL

Anita L. Principe, BSN, MPA, Senior Transplant Coordinator, Montefiore Medical
Center, Bronx, NY

Cozette Proctor, Donor family member. Works intransplantation research at the
Washington Hospital Center, Washington, DC, in transplantation research.
Annandale, VA

Jeffrey Prottas, PhD, Research Professor, Bigel Institute, Brandeis University,
Waltham, MA

Barbara K. Redman, PhD, RN, FAAN, Executive Director, American Nurses
Association, Kansas City, MO

John J. Requard; Ill, BS, Executive Director, Mid-America Eye and Tissue Bank, St.
Louis, MO

Kenneth E. Richardson, Executive Director, Kentucky Organ Donor Affiliates,
Louisiana, KY

Ernest0 Rive-Mora, MD, Assistant Chief, Veterans Administration Medical Center,
San Juan, PR

Joann Ellison Rodgers, MS, Director of Media Relations, John Hopkins Hospital,
Baltimore, MD

Cynthia Rodriquez-Harriman, LVN, Family Services Coordinator, UCLA Regional
Organ Procurement Agency, Los Angeles, CA

Willie R. Ross, MD, Director, Renal Unit, St. Louis Regional Medical Center,
St. Louis University School of Medicine, St. Louis, MO

Oscar Salvatierra, Jr., MD, Executive Director, Pediatric Renal Transplantation,
Presbyterian Medical Center, San Francisco, CA

Maritza R. Sanchez, Donor Family Member, Silver Spring, MD

xii


Sarah J. Sanford, RN, MA, CNAA, Executive Director, American Association of
Critical Care Nurses, Alisa Viejo, CA

Eduardo A. Santiago-Delpin, MD, Transplant -Director, Puerto Rico Transplant
Program, Auxello Mutiro Hospital, Hato Rey, PR

Barbara A. Schanbacher, RN, BSN, Transplant Services, University of Iowa
Hospital, Iowa City, IA

Edith M. Servino, RN, Director of Education, United Network for Organ Sharing,
Richmond, VA

Byers W. Shaw, Jr., MD, Chief, Transplant Service, University of Nebraska Medical
Center, Omaha, NE

Charles F. Shield, Ill, MD, General Surgeon, Wichita Surgeon Group, Wichita, KS

Robert E. Shoenberg, PhD, Education Consultant, Silver Spring, MD

Karen L. Smith, MS, Education Liason, LifeGift Organ Donation Center, Houston,
TX

Aaron Spital, MD, Clinical Assistant, Professor of Medicine, University of Maryland
School of Medicine, College Park, MD

Vaughn A.' Starnes, MD, Associate Professor of Cardiothoracic Surgery, Director of
the Heart-Lung and Lung Transplant Program, Lucile Salter Packard .Children's
Hospital, Stanford, CA

Sylvester Sterioff, MD, Professor of Surgery, Director of Transplantation, Mayo
Clinic, Rochester, MN

Mary L. Stoeckle, RN, MSN, CCRN, Donor, Critical Care Instructor/Organ
Procurement Coordinator, Mercy Hospital Anderson, Cincinnati, OH

Otis L. Story, Sr., University of Medicine and Denistry of New Jersey, Newark, NJ

David E. R. Sutherland, MD, PhD, Professor of Surgery, University of Minnesota
Hospital and Clinic, Minneapolis, MN

Arthur L. Trask, MD, FACS, Director, Trauma Services, Fairfax Hospital, Falls
Church, VA

. . .
Xlll


Moraima Trujillo, MD, Clinical Assistant. Professor, University of Miami School of
Medicine, Miami, FL

Alejandro Vasquez, Teens for Transplant, Houston, TX

Pedro Vergne-Marini, MD, FACP, FACC, Clinical Professor of Medicine, University
of Texas Southwestern Medical School, Dallas, TX

Jane Warmbrodt, Fairway, KS

Phyllis G. Weber, RN, Executive Director, California Transplant Donor Network, San
Francisco, CA

Daniel Whiteside, DDS, Government Relations Director, American Association of
Colleges of Osteopathic Medicine, Washington, DC

Peter F. Whitington, MD, Director, Section of Pediatric Gastroenterology,
Hepatology and Nutrition; Departments of Pediatrics and Medicine, University of
Chicago, Chicago, IL

Mark E. Whitlock, MS, Health Education, Mid-American Transplant Association, St.
Louis, MO

Ellen Bethel Yeager, MS, Assistant Principal, Woodrow Wilson High School,
Washington, DC

James B. Young, MD, Associate Professor of Medicine, Multi-Organ Transplant
Center, Methodist Hospital, Houston, TX

Andrea Zachary, PhD, President, American Society for Histocompatability and
Immunogenetics, Histocompatability and Immunogenetics Laboratory, Cleveland
Clinic Foundation, Cleveland, OH

xiv


AATB     American Association of Tissue Banks

ABTC

American Board of Transplant Coordinators

ACT

American Council on'Transplantation

AHA

American Hospital Association

AOPO

Association for Organ Procurement
Organizations

ASH1

American Society for Histocompatibility and
Immunogenetics

ASTP

American Society for Transplant Physicians

ASTS

American Society for Transplant Surgeons

CDC

Center for Disease Control

DHHS

Department of Health and Human Services

DOT

Division of Organ Transplantation

EBAA

Eye Bank Association of America

ESRD

End Stage Renal Disease

HCFA

Health Care Financing Administration

HHS

Health and Human Services (Department of)

HIV

Human Immunodefkiency Virus

xv


HRSA    Health Resources and Services Administration

IHS

MOTTEP

MHC

NATCO

NIH


NKF

OPO

OPTN

PHS


RFC


RFP

SEOPF


TRIO

UNOS

USRDS

Indian Health Service

Minority Organ/Tissue Transplant Education
Center

Major Histocompatibility Complex

North American Transplant Coordinators
Organization

National Institutes of Health

National Kidney Foundation

Organ Procurement Organization

Organ Procurement and Transplantation
Network

Public Health Service

Request for Contract

Request. for Proposal

South-Eastern Organ Procurement Foundation

Transplant Recipients International
Organization

United Network for Organ Sharing

United States Renal Data System

xvi



SURGEON GENERAt'S WORKSHOP
ON lNCREAS.lNG ORGAN DONATION

INTRODUCTION

Historical Perspective on Organ Transplantation and Donation

Antonia C. Novello, M.D., M.P.H., Surgeon General, U.S. Public Health Service,
Washing ton, 0. C.

David E. R. Sutherland, M.D., Ph.D., Professor of Surgery, University of
Minnesota, President, American Society of Transplant Surgeons

Successful organ transplantation is one of the many medical miracles that have
occurred in our extraordinary century. The dream is ancient. The well-known
story of Cosmos and Damian, the martyred twin physicians who replaced the
gangrenous limb of a white sacristan with that of a dead Moor, is visually recorded
by. many artists.  However, it was not until the 1900s that scientifically
documented attempts at organ replacement were made, and not until the last half
of this century that success was achieved.

Although there was much faltering along the way, continuous advances in surgical
technique, preservation, immunosuppression, and control of infectious diseases
have now made success routine, so much so that the demand for human organs
far exceeds the supply. This shortage has prompted a resurgence in
xenotransplantation research (1), an avenue with the potential to lead us full circle.
The first recorded organ transplants in humans (during the first quarter of the
century) were from animal sources (2). All failed immediately. With a few
exceptions (3), so did subsequent transplants from human donors until the
landmark identical twin cases carried out at the Brigham Hospital in Boston during
the mid-1950s by Murray, Harrison, Merrill, and associates (4).

Cadaver kidney transplants, however, continued to fail, as did most nonidentical
twin related donor transplants, until the introduction of chemical
immunosuppression in the 1960s (5). When azathioprine and steroids were used
together, reversal of rejection episodes and long-term graft function became
possible (6), feeding the stream that grew into the torrent we see today.

The sequential introduction of more effective immunosuppressants (polyclonal
antilymphocyte preparations in the late 1960s and 1970s (7,8), and cyclosporine
(9,10,11) and monoclonal antibodies (12) in the 1980s) were associated with

1


continuous improvement of, results. By the early 1970% well organized transplant
teams were in place in several institutions, reimbursement for kidney transplants
was assured by Medicare, and liver and heart transplants were beginning to be
successful through the pioneering efforts of Starzl,, Caine, Barnard, Shumway, and
others (13-l 6).

In the 1980s extra-renal organ transplantation came into its own, with a success
rate similar to that of cadaveric kidney transplants (17). By `1990, pancreas
transplant results were also similar to that of the other organs (18).

The number of candidates for transplants of all organs dictates long and sometimes
futile waits. Xenotransplantation has not yet become clinically applicable. There is
a shortage of donors from closely related species (where success can be achieved
in animals), while preformed natural antibodies against the more abundant but
distantly related species remain an impenetrable barrier. Although these problems
may be solvable and warrant vigorous investigational efforts, it is almost certain
that during the next decade clinical transplants Will still require human organs.
Therefore, vigorous efforts are needed to increase their supply.

The history of organ donation is complex. As mentioned, the first successful
kidney transplants were from living related donors. Although generally accepted as
a legitimate act of altruism in the United States, there is still controversy over, and
discomfort with, violating the medical imperative "primum non nocere" -- first do
no harm (referring to the donor, of course). Variations in the prevalence of this
attitude are reflected by the different rates that living related donor transplants are
performed throughout the country.~ Historically, living related donors were
successful because a fresh, undamaged kidney that would function immediately
was available, and the close genetic matches mitigated against rejection during a
time when the immuno-suppressive armamentarium was less than it is today.
Nevertheless, it was apparent early on that it would be necessary to transplant
cadaver kidneys to meet the needs of patients with end stage renal disease.

Many of the first cadaver organs were procured from individuals who were unable
to come off the pump during open heart surgery, and the kidneys were removed
during circulatory and respiratory support. The use of respiratory support systems
for individuals with brain damage ultimately led to the concept and definition of
"brain death." Formalizing criteria for brain death was necessary both to manage
this tragic situation and to allow removal of organs for transplantation in the
presence of circulatory and respiratory support.. The publication of the Harvard
Brain Death Criteria in the late 1960s (19), passage of legislation on the Uniform
Anatomical Gift Act, evolution of relations between transplant centers and a
network of hospitals and neurosurgeons who would identify brain dead cadaver
donors, and employment of nurses designated specifically to coordinate the
donation process, resulted in the process by which procurement of cadaver organs

2


became a standard procedure throughout thecountry by,the early 1.970s.. Ad hoc
sharing arrangements were made, organ :procurement foundations (e.g., the
Southeast Organ Procurement Foundation) and organ banks (e.g., Midwest)
emerged. By the 198Os, about 2000-3000 brain dead cadavers per year were
utilized for organ transplantation.                  

The passage of the National Organ Transplant Act in the mid-l 980s led to the
creation of the United Network for Organ Sharing (UNOS), standardizing and
formalizing organ procurement agencies throughout the country. Most of them
served more than one transplant center. There was hope that this kind of
organization would, by itself, lead to an increase in organ donation, a hope which
unfortunately was not fulfilled. About 4000 donors per year have been registered
with UNOS from their inception (1986) through the end of the 1980s. Studies by
Bart, et al (20) in the early 1980s indicated that the potential for organ donation
greatly exceeded actual achievement.  In two areas of the United States that he
surveyed, only one in six brain dead cadavers were used. Whether the figure is
similar today is not yet known, but new studies are under way. Some cadavers
used in 1980 might not be used today, e.g., those with histories placing them at
risk for HIV. Tests for HIV or hepatitis C were not available in 1980 but they are
today, leading to further (and appropriate) exclusions. Thus, the proportion of
cadavers that would be classified as suitable today may differ from the number
judged'suitable at the time of the Bart study. What is certain is that the number of
cadavers used for donation is substantially less than the potential, and the need to
increase cadaver organ donation is pressing. The potential to increase living
related donation also exists. Strategies to increase donation are intertwined with
ethical, financial, racial, demographic, and other considerations. It is to discuss
and explore these issues that the'surgeon General's Workshop is convened.

.Over the years many conferences have been held on the many issues involved in
organ donation. The first was sponsored by the CIBA Foundation in 1965 (21).
The extraordinary document that emerged from that conference contains
discussions touching on virtually all the issues that,are still of concern to us now,
including living donation and the concept of brain death (the term being first used
at this conference) in cadavers that allows organs to be removed while still under
respiratory support. The issues raised then continue to be debated and many
examples of such debates can be cited (22,23).

The most recent conferences specifically devoted to donor issues include one held
in Munich in December 1990, entitled "Commerce, Ethics and Justice in
Transplantation." Another, sponsored by the National Kidney Foundation (NKF) in
February 1991 was entitled "Controversies in Organ Donation." The latter was
designated as a consensus conference and, after intense discussion, issued
statements on living donation, financial incentives, presumed consent, and minority
donation. (All participants in the Surgeon General's Workshop should be familiar

3


with the consensus statements from the NKF Conference.)+ In this instance,
"consensus" does not irnply.complete agreement on all the issues raised, but rather
gives an indication of the evolved thinking of experts over the last 25 years.

However, in general, everyone agrees that efforts are' needed to increase the
supply of human organs. Difference of opinion involves only the means, not the
ends.

The purpose of this introduction is not to expand, on the background papers for the
workshop, since the papers themselves were designed to be comprehe.nsive. The
first set of papers all address the issue of how to increase donation by focusing on
the individual. Campaigns that reach the general public are needed. In the final
analysis, it is education that will lead to positive attitudes toward organ'donation.
Educational efforts must be tailored toward the various socio-economic and cultural
groups that exist in this country. This will be particularly important for increasing
donations among racial groups who are disproportionately affected by the diseases
for which transplantation is the optimal therapy. For example, blacks comprise
only 12 percent of the total United States population, but they constitute 30
percent of patients on dialysis waiting for a kidney transplant. There has been
much publicity about the fact that blacks have received less than 30 percent of
cadaver donor kidneys (24). This is, at least in part, attributable to the fact that
kidneys are distributed according to HLA matching; 92 percent of cadaver kidneys
procured in the United States have come from non-black donors, making a match
less likely. Efforts to increase donation. among blacks are being made, but we
clearly cannot expect organ donations greater than their proportion in the
population. Distribution of organs must be made equitable without having a
negative impact on transplant results. Ultimately the goal should be to improve
anti-rejection strategies so that HLA matching becomes less important.
Distribution could then be on a basis other than the chance inheritance of certain
HLA antigens.

The second set of papers discusses how to increase donation by focusing on the
health care environment. Besides regulatory issues, education of our professional
groups is also needed. Impediments to donation do not always spring from the
attitudes of the families of potential donors, but from environments where donation
is not even discussed. Professional attitudes can make a difference.

A third set of papers discusses donor criteria. The criteria for being a donor have
become more stringent - and appropriately so - with regard to assuring against
transmission `of diseases such as HIV or hepatitis C. On the other hand, criteria for
being a donor could be more liberal in regard to factors such as age. Arbitrarily

TAvailable on request from The National Kidney Foundqtion, Inc., 30 East 33rd Street, New York,
NY lOOIS; 18001 622-9010.

4


chosen exclusion criteria need to be examined scientifically. The very important
issue of using non-heart beating cadaver donors is also addressed, Most deaths
occur with the cessation of heart beat. Can the logistical aspects be solved to
make these cadavers also sburces of organs? These considerations involve legal
and ethical issues. Presumed consent might be necessary for use of non-heart
beating donation to be possible.

Finally, the use of living unrelated as well as related donors is discussed. Some of
us feel that the use of living donors is justified only if the results are superior to
those of cadaver donors, while others think that the use of living donors is justified
if the results are at least equal, as long as there is a shortage of cadaver donors.
Not using living donors is to deny someone a transplant, and why should the
results have to be superior to justify their use? Thus, the debate goes on.

In summary, this workshop brings together all the groups and disciplines that are
necessary to make transplantation the highly successful enterprise it is today. The
challenge now is to expand the enterprise through increased donations, so that all
who could benefit from transplantation m benefit.

7.

2.

3.

4.

5.

6.

7.

8.

REFERENCES

Platt JL, Vercellotti GM, Dalmasso AP, et al. Transplantation of discordant xenografts: a
review of progress. lmmunolooy Todav.  7990; 7 7:450-457,

Groth CG. Landmarks in clinical renal transplantation. Sure Gvnecol Obstet.
7 9 72; 7 34:323-328.

Hume DM, Merrill JP, Miller SF, et al. Experience with renal homotransplantation in the
human: Report of nine cases. ,J Clin Invest.  7 955;34:32 7-382.

Merrill JP, Murray JE, Harrison JH, et al. Successful homotransplantation of the human
kidney between identical twins. JAMA.
               7956; 760:277-282.

Murray JE, Merrill JP, Harrison JH, et al. Prolonged survival of human-kidney homogra fts
by immunosuppression drug therapy. New Enol J Med.  7963;268: 73 7 5- 7323.

Star21 TE, Marchioro TL, Waddell WR.  The reversal of rejection in human renal homografts
with subsequent development of homograft tolerance. B.
7963; 7 7 7:385-395.

Starzl TE, Groth CG, Terasaki PI, et al. Heterologous antilymphoctye globulin,
histocompatibility matching, and human renal homotransplantation. Sum Gvnecol &
7 968; 7 26: 7 023- 1035.
Obstet.

Najarian JS, Simmons RL.  The clinical use of antilymphocyte globulin. N Enol J Med.
7977;285:758-766.

5


9.

Catne RY, RoJJes K, Thiru S, et al. Cyclosporin A initially as the only immunosuppressant in
34 patients of cadaveric organs; 32,kidneys, 2 pancreas, and 2 livers. lance&
I9 79;2: 1033- 1036.

10.

Starzl TE, Weil R III, lwatsuki S, et al. The use of cyclosporin A and prednisone in cadaver
kidney transplantation. Sum Gvnecol Obstet. 1980: 15 l:? 7-26.

1 I.  Ferguson RM, Rynasiewicz JJ, Suthertand DER, et al. Cyclosporin A in renal
  transplantation: A prospective randomized trial Suroerv.
                         1982;92: l75- 182.

12.

Cosimi A8, Burton RC, Co&in R8, et al. Treatment of acute renal allograft rejection with
OKT3 monoclonat antibody. Transolantation. 1981;32:535-539.

13.  Starzl TE, Personal reflections in transplantation. Sum C/in North Am. 1978;58:879-893.

14.

Caine RY. Organ Transplantation: from laboratory to clinic. 8rit Med J.  1985;29 1: 175 l-
1754.

15.

Barnard CN. A human cardiac transplant. $ Afr Med J.  1967;41: 1271-1274.

16.

Shumway NE. Cardiac replacement in perspective. Heart Transolantation. 1983;3:3-5.

7 7.

Terasaki PJ. Clinical Transolants 1988. Los Angeles, CA UCLA Tissue Typing
Laboratory; 1988.

18.

Terasaki Pt. Clinical Transplants 1990. Los Angeles, CA UCLA Tissue Typing
Laboratory; 1990.

19.

Ad Hoc Committee of the Harvard Medical School to Examine the Definition of Brain Death.
A Definition of Irreversible Coma. ,JAMA.
               1968;205:85-88.

20.

Bart KJ, Macon EJ, Whittier F@, et al. Cadaveric kidneys for transplantation: A paradox of
shortage in the face of plenty. Transplantation. 1981;31:379-382.

21.   Wolstenhofme GEW, O'Connor M (edsl. Ethics in medical orooress: With special reference
   to transoiantation. Boston, MA:Little 8rown;?966.

22.

Sutherland DER. Living related donors should be used whenever possible.  Transn Proc.
1985; I 7: 1503- 1509.

23.

Kreis H. Why living related donors should not be used whenever possible.  Transp Proc.
1985;17:1510-1514.

24.

Kusserow RP. maof
Department of Health and Human Services, Office of Inspector General.  199 1.

6



          MOTIVATING THE PUBLIC:          
APPLICATION 0FLESSON.S LEARNED TO INCREASING ORGAN
                DONATlON

Elaine Bra tic Arkin, Health Comrrg.mica tions Consultant, A ding ton, VA

INTRODUCTION

The understanding of how to influence individual behaviors and societal norms has
increased dramatically over the past 20 years. Social and health change agencies,
marketers, and political image makers now use far more sophisticated techniques
and technologies. As a result, strategies designed to influence, or "manipulate,"
are increasingly successful. And competition for the public's attention and interest
is fierce. The opportunity exists for the organ donor community to take advantage
of these advances in te.chniques and technologies.

Although the issue of organ donation is unique in many ways, there are some
factors inherent to educating and motivating the public that transcend the subject
matter. Some of these have emerged from behavioral, communication, and
educational research. Others have arisen through trial and failure--lessons learned
throu,gh Federal and other programs designed to produce behavioral change. The
behavioral intent of these programs ranges from the relatively simple
(immunization), to complex and difficult (breaking nicotine addiction). Others
require individuals to confront their own vulnerability to disease and death
(wearing condoms to prevent AIDS; seeking early detection of dreaded cancers).
Beyond a lack of awareness and needed skills, many of these programs also have
had to confront issues of denial, distaste, cultural taboos, and breaking with
closely held traditions. There are many examples to prove that such change is
difficult; there also is evidence that change is possible.

The purpose of this paper is to provide background information and to identify
issues related to the potential value of'educational campaigns to increase organ
donation. This paper consists of four sections: the implications of selected
theories, models, and disciplines for organ donation programs; recommendations
emerging from analytic studies of mass media and other communication programs
and community-based research; selected case studies demonstrating different
approaches to motivating behavior change, and lessons learned from these
programs; and recommendations for the design of a program to increase individual
and social support of organ donation.

7


THE APPLICATION OF MODELS, THEORIES, AND DIS,ClPLlNES
     TO MOTIVATING O&AN DONATION

Programs designed to promote behavior change are based on a number of models,
theories, and disciplines. Behavioral change models and theories outline the
complex process of individual change; diffusion theories explain how change
moves through society.' Other models examine the factors that ease or block this
process.

For example, trial of a new behavior, such as family di.scussion and acceptance of
organ donation intentions, follows awareness, understanding, interest, acceptance,
personalization, and decision making related to the issue (1). The behavior change
begins with awareness and requires that an individual proceed through this series
of stages that culminates in behavior trial and change. .Strategies to motivate
behavior change must address each of these stages in turn, as the individual
progresses toward the behavioral goal.

Public awareness of organ donation, which is very high (2), and favorable attitudes
toward donation, also widespread (3,4), are only the beginning. Public response to
the need for donated organs is still minimal. .In 1987, Gallup reported that only 20
percent of those aware of organ transplants (84 percent of adults) had completed
an organ donor card (2). For an individual to take positive action, he or she must
become interested in organ donation, be convinced not only of its value but also of
personal relevance, and know what to do about it. According to several studies,
the public is still ambivalent about organ donation (2,3,4).

For organ donations to increase, there must be a supportive environment, in
addition to acceptance and action by individuals. No one acts in isolation. If a
person chooses to act, there must be positive support for that action to "take."
That requires a positive family response to. raising the issue of prospective
donation, family acquiescence at the time of donation, and health system support
and utilization of the decision (1). Therefore, increasing organ donations will
require strategies that extend beyond educating and motivating individuals.
Concomitant strategies to assure that social support and health system support
exist to reinforce individual decision making also are necessary (5).

A large body of literature examines the diffusion of innovations, and how these
new ideas (innovations) affect individuals (their knowledge,. attitudes, and
behavior) and social systems. Diffusion studies (6) look at what happens to an
innovation such as donating organs. Whether the innovation is accepted (the new
behavior adopted) depends upon whether individuals perceive it as beneficial, see it
as in accordance with their needs and values, find it easy or difficult to understand
or adopt, try the behavior, and find peer acceptance of it (6).

8


Information about an innovation can be communicated in different ways: through
the mass media; community routes (e.g., schools, employers, religious
institutions); or through inferpersona! contact (e.g., family, friends, teachers, health
care providers). Different. means of communication are appropriate at different
stages of the adoption process. For example,.the mass media reach broad
audiences quickly, an effective way to introduce new information or influence
public attitudes. Community routes may be more credible. And, at the point of
trial, interpersonal discussions are-more influential (6). This means that a
combination of the use of mass media to increase public understanding and
support of organ donation with the credibility o.f community programs and
interpersonal communication to provide motivation, skills, and support, is more
likely to increase public response to organ donation than the use of mass media
alone.

Communication of all types plays a necessary but not necessarily sufficient role in
producing societal change. Other factors such as community linkages, regulations,
social support, and incentives have an effect on the rate of acceptance of
innovation (7). Some of the factors that are influential in facilitating or blocking
behavior changes include an individual's knowledge, attitudes, behavior, beliefs,
and values that affect willingness to change; the structure of the environment
(community) and an individual's situation that facilitates or presents obstacles to
change; and the positive or negative effects of adopting the behavior (including
social acceptance and support) (7). For organ donation, an example of a barrier is
religious beliefs that may predispose an individual against donation. One structural
("environmental") barrier might be a lack of clear hospital policies about organ
donation, or lack of health care provider knowledge of the policies. Convenient
access to donor cards is one example of a factor that can facilitate a behavior
change.

Research indicates certain predictable patterns lead to large scale behavior change.
The behavior change moves through a population in "waves," as adoption occurs
first among "innovators," then "early adopters."

A new behavior is first adopted by a small segment of the population (who are
referred to as "innovators"), and then by "early adopters" (8). These two
segments of the population are likely to be well educated, affluent, and keyed into
emerging trends through the media and in other ways. They are the individuals
who are most likely to be able to "afford" change, both psychologically and
financially. Organ donation appears to be attracting this population segment:
those most likely to donate are white, younger, more educated, and more affluent
(WI.

It is the subsequent adoption of new behaviors by the "early" and "late majority"
that transforms the idea or behavior from an innovation to the social norm. Organ

9


donation has yet to reach this status. This middle, majority group tends to
respond to interpersonal influences as much as or more than the mass,media --
another indication that a combination of motivational strategies is called for at this
point (6).

The remaining population segment, "late adopters," are those individuals who lag
farthest behind in change. Often referred to as the "hard-to-reach" within the
public health community, this group is more likely to be socially or economically
disadvantaged, underserved and/or isolated (8). While many public health
programs target this last, most difficult to influence group, organ donor efforts
should first seek to persuade individuals who are more likely, rather than less likely,
to participate.

Health education (8) and social marketing (9) both call for careful delineation of
target audiences, and a thorough understanding of the individual and the
community systems that either support or block change. Behavior change
strategies must appeal to what the target audience.perceives as needed, valued,
and desired, and must be modified to be appropriate for different population
groups. Building strategies on the intrinsic value of organ donation, or the "public
good, " is not likely to be perceived as personally relevant for most people.

Health'education strategies follow a continuum that culminates in behavior change
and reinforcement to perpetuate that change. Because health education programs
target different population groups and a range of precursors to change, a planned
mix of methods and strategies is employed. Intermediate strategies leading to a
goal of behavior change address what must occur as prerequisites. For organ
donation, as for many other behavior change issues, interactions between (at least)
several people are required for the goal to be met. This suggests that there should
bs coordinated strategies that target the different groups that must act for change
to occur. For example:

0  the potential donor, because expressing one's desires to donate to family
  members, and signing a donor card, may increase the likelihood that a family
  member will later agree to the donation (2,3,4).

0  bereaved familv members, because donation depends, in most cases, on the
action taken by a family member at the time of death.

0  the health care orovider, because the donation transaction depends upon the
  capacity of the system to respond.

Programs addressing each target group require very different activities, routes of
communication, and messages,

10


Social marketing practice has been broadly adopted by health and social change
agencies over the past 20 years. In addition to target audience segmentation, it
advocates the use of market research, message (product) testing, identifying and
addressing barriers and opportunities for change, planned communications, and the
use of incentives and/or the demonstration of benefits to stimulate acceptance of
behavior change (9). The focus for developing effective motivational strategies is
on identifying and relating to the needs, wants, and values of the target
population, rather than on the intrinsic values of the behavioral goal.

A recent turn-about in the commercial marketing field is "guerilla marketing" (10).
Guerilla marketing takes into account the vast, number of advertising messages
bombarding consumers, especially through the -mass .media, and the proliferation of
mass media choices that have become available to consumers in the past few
years. This multitude of media choices has made reaching consumers through the
mass media more of a challenge, Therefore, guerilla marketing offers a broad
range of "new," creative, non-media opportunities to expose consumers to
marketing messages, such as point-of-purchase (ads on grocery carts), promotion
at events (health fairs), or at other sites (product sampling at malls). Many of
these "nontraditional" methods have been the mainstay of nonprofit programs over
the years, especially community-based programs with small budgets and no option
to buy mass media time or space. Seasoned marketers recognize that there is
intense competition for the public's attention, that message repetition through
many media carries the best chance of breaking through the information "clutter,"
and for repetition to work, the message must be the same no matter the medium.
These lessons are as important for increasing attention to organ donation as for
other topics (9).

It also is useful to review how public relations influences public opinion about an
organization, a program, or an issue. An informed, supportive public is the first
step toward increasing the number of organ donors. Public relations strategies are
designed to influence the public to support an issue, program, or organization. Its
practitioners continually monitor public knowledge and attitudes, recognizing that
public opinion is subject to continuing shifts, and that public perceptions of an
issue are not automatically accurate, or supportive, even if an issue is intrinsically
"good" (11). Public relations strategies that can influence public opinion include
actively seeking, in a planned way, to attract positive attention for an issue such
as organ donation, to build confidence in the sponsor (organization), to lend
credibility to the issue, and to gain governmental cooperation, or influence policies
and laws, as well as gain public support.

One final field, health communications, is founded on a combination of behavioral
and communi,cation sciences, health education and social marketing. Health
communications, as practiced by U.S. Public Health Service (PHS) and other
national agencies, extends beyond information dissemination to include a variety of

11


proactive strategies. General!y, these programs focus on what communications
can contribute to broad health and social issues, including to:

-raise awareness

-increase knowledge
-influence attitudes
-demonstrate benefits of behavior change
-reinforce knowledge, attitudes, and behaviors
-demonstrate skills
-suggest an action
-increase support and or demand for services (12).

Because communications strategies alone usually are not sufficient to produce
behavior change, these programs are frequently components of interventions that
address other contributing factors. One example, the National High Blood Pressure
Education Program, is included as one case study in this paper.

Several PHS agencies include "media advocacy" as one of several communication
strategies. Media advocates focus on using the mass media as an arena for
influencing social and `public policy (13). Very often, media advocacy messages
and strategies are designed to negate a nonsupportive or opposing force. Media
advocacy can be used to promote a point of view, and frequently is used to
counter alcohol and tobacco advertising and marketing. Media advocacy also can
be used to identify and counter misleading information. This attention-getting,
confrontational approach is generally paired with more positive public relations
strategies that are designed to seek media cooperation, and to prevent, or lessen,
negative media coverage, including misinformation.

Behavioral, communication, and.other change theories and models, as well as
relevant practices, provide guidance for increasing organ donation.

1.   Public awareness of organ donation is clearly insufficient to produce an
  increase in donations. Knowledge, attitudes, interest, social support, and
   skills must be increased to motivate organ donation.

2.

Behavior change is the final stage in a continuum that begins with
awareness. To motivate behavior change, each stage in the process must
be addressed. Affecting changes in knowledge and attitudes is a
prerequisite to behavior change, but is not sufficient to cause change.

3.

Effective motivation begins with the identification of each target group (e.g.,
individuals matching the profile of most likely donors) and designing
strategies based upon that group's values, needs, and desires, rather than
broader perceptions of organ donation as the "right thing to do."

12.


4.

5.

6.

7.

8.

9.





10.

Market research &necessary to.understand what will motivate a specific
population group, what barriers to organ donation must be addressed, and
how best to reach a target group with an organ donor message.

Appeals based on research findings should be tested with the target
audience to assure relevance to their percaptions, values, and interests.

Tracking the public's knowledge, attitudes, and behaviors also is needed to
assess whether and what changes are occurring, and to permit modifications
to motivational strategies as public'views change.

For organ donation rates to increase, multiple target audiences (e.g., the
potential donor, family members, health care providers) must be addressed,
motivated, and provided, with the skills and services needed.`

Change strategies are needed to increase social support for organ donation
and decrease institutional barriers. Strategies directed at individual behavioral
change alone are insufficient to increase the supply of donated organs.

Planned strategies and consistent interaction with the mass media are
needed to increase supportive media coverage and decrease negative images
and misinformation, and reduce the attitudinal barriers that these create.

For organ donation to be repositioned from an "innovation" to a social norm,
a combination of mass media, community, and interpersonal communication
strategies is needed.

In practice, the application of these theories and models does appear to strengthen
program effectiveness. The next section reviews how this application works.

CONCLUSIONS REGARDING THE DESIGN OF MOTIVATIONAL PROGRAMS FROM
                   SELECTED STUDIES

Summarized here are the findings from five selected analytic studies that
cumulatively reviewed dozens of communication and/or motivational and behavior
change programs focussing on a channel (mass media), or a topic (smoking, safety
belts), or audience (youth), Several of these studies included extensive interviews
with diverse experts. The conclusions reported here were commonly reached by
most of these researchers. Each reported many additional findings not included
here, but yield.ing a rich source of information for planning behavioral change
programs (14,15,16,17,18). Also summarized are the findings from the landmark
Stanford Three City Study (19).

13


The Role of. the Mass Media

Uses of the mass media (television, radio, newspapers, ,and magazines) include
public service announcements (PSAs); news; message placement in entertainment
programming and films; production.of television programming; paid advertising;
and publishing targeted magazines. Other options include newspaper supplements,
editorials and letters to the editor, media-sponsored events, and call-in talk shows.

One author concludes that the " .-..mass media can play an important but limited
role" (14). Among the functions that the mass media can serve is helping
establish awareness and knowledge of an issue, or helping establish broader school
and/or community-based programs (e.g., by raising public awareness of a program,
helping to recruit volunteers, promoting materials and events, reinforcing
educational messages, and generating support for changes in public policy). The
mass media also can stimulate interpersonal discussion and information seeking
behavior.

Therefore, these authors see mass media strategies as one component of broader
programs designed to influence change.' However, they point out that the use of
the media is vital to introduce a new program, quickly raise awareness, knowledge,
and interest among the population; coalesce organizational interest to expand
community-based involvement; influence public attitudes and maintain public and
leadership support, and reinforce interpersonal and community-based behavior
change strategies.

Planning a Campaign

A number of conclusions have. been drawn about what makes a motivational
campaign effective. These conclusions address issues of theoretical foundations
for programs, planning and evaluation considerations, program context and
program duration.

Programs that utilize the principles of behavior change are likely to be more
effective, as are those that set realistic goals based on what a campaign can be
expected to accomplish. A social marketing influence is present in these more
successful campaigns, which focus on carefully selected target audiences and use
market research in planning. In addition, these programs use other formative
evaluation methods including materials pretesting with target audiences. Tracking
and other evaluation methods also are used to monitor progress and demonstrate
results.

One aspect of successful planning is the inclusion of key "power figures" and
groups.  Advantages to this approach include access to a broader resource base, a
broader base of program support, and continued support. Including key leaders

14


and groups alSO is essential to assure consistency on the same topic; to address
social, community, and institutional factors that interrelate to the success or failure
of the campaign; and to access the expertise of professionals from many
disciplines. Establishing linkages with community-based organizations, the health
care delivery system, and governmental agencies also is an important contributor
to success.

Timing is another key campaign planning factor, including timing program release
to avoid conflicts with similar or competing events. These authors recommend
planning for the long term, with intermediate objectives that contribute to an
ultimate behavior change goal. They also note that it is not realistic to expect
changes as a result of brief interventions.

Designating Target Audiences

The era of designing campaigns for the general public is long past. Segmenting
broader populations into narrower groups (target audiences) and basing program
design on knowledge of these groups is now the norm. Target audiences most
often are the individuals among whom the behavioral change is sought, but those
who can influence the primary target group(s) also should be considered as targets.
These "influence agents" might include parents, friends, employers, or physicians.
Segmentation into groups solely by demographics is not considered to be as
effective as also considering psychosocial variables. For organ donation, for
example, people who are more materialistic appear to be more likely to consider
their organs as central to their self image (3). Target audiences are prioritized
according to their potential for affecting the issue, accessibility, likelihood of
change, and ability to influence others;

Campaign objectives and strategies may vary for each group targeted.
Communications routes may also differ, depending upon the lifestyles and habits of
each targeted group.

Developing Motivational Messages

A number of integral factors contribute to the effectiveness of a message,
including credibility, appeal, personal relevance, and intent. Messages that are
based on the target group's knowledge, attitudes, values, and behavior, that are
tested, and that offer a direct benefit, are more likely to be effective.

Style and production quality are important for attracting attention to a message.
Celebrities also can be helpful in attracting attention, but these authors caution
that celebrities also may not be perceived as credible or relevant to the target
group's personal experience, thereby detracting from message effectiveness.

-15


Target audience perceptions about the.credibility of a spokesperson or message
sponsor affects message acceptance. People tend to trust sources similar to
themselves, one reason why testimonials by `individuals from the target group often
are compelling.

In addition to testimonials, these authors review other kinds of message appeals.
Rational appeals are most effective when used to respond to an acknowledged
need, and with more sophisticated audiences. Emotional appeals are often more
motivational, especially for individuals who have not acknowledged a need.
Threats of harm (moderate fear appeals) can motivate; strong fear appeals can
produce rejection of the message. Fear works best when the message includes a
simple action that can alleviate the anxiety,. when the target audience does not
perceive themselves as vulnerable, and when the source of the message is very
credible. However, the appropriate use of fear remains controversial and these
authors generally caution against its use.

Rather, they urge the use of more positive appeals such as the rewards of taking
an action as opposed to the consequences of not doing so. Emphasizing
immediate, personal rewards and benefits is seen as more relevant to most people
than more distant, intangible effects. For organ donation, some studies have
suggested that patients may be more likely to donate when appeals are based on
benefits to them, rather than to others (3). These authors also recommend the use
of incentives that build on the existing motives, needs, and values of the target
group.

There are two important criteria for messages to motivate: the message must be
effective -- that is, be clear, comprehensible, appealing, relevant, and motivational
to the target audience. And the target group must be exposed to the message;

Promoting the Campaign

Repeated exposure to a message generally increases its effects with the targeted
population. Exposure to a concentrated cluster of message repetitions appears to
work better than dispersion over a longer period of time.

Different mass media (television, radio, newspapers, magazines) attract different
audiences, with television attracting the broadest audience and radio tending to
attract more specific kinds of listeners. The choice of media format (print or
broadcast) and outlets should match the message purpose and the media habits of
the target population. Different people have different media habits (such as
preferences for television over radio, or prime time over afternoon viewing). Public
service announcements (PSAs) alone generally are not effective in bringing about
behavior change; they must be combined with other approaches. The authors
recommend using multiple media outlets, in combination with promotion through

16


community, small group, and individual activities.  The authors also recommend
considering selected purchase of media time and space, developing an
understanding of, and personal, ongoing relationships with the media. Lqcalizing
the issue to relate to the needs of the community also is viewed as important.

Other Findirigs

Many of the campaigns reviewed by these ,authors were federally-sponsored.
Others were sponsored by national nonprofit organizations, and still others were
community-based. Several authors offered additional observations about Federal
campaigns.

Many Federal programs with limited resources have chosen a highly visible,
agenda-setting, nationwide, ongoing mass media program as the most,, appropriate
contribution to an issue. This can be an effective strategy when the mass media
campaign is backed by collaboration with other organizations better positioned to
offer leadership and services within the community. An example of this approach
is included as a case study in this paper (Office on Smoking and Health).

In other cases, Federal agencies have positioned a mass media campaign as a
"quick fix" to a public health problem or response to an issue. Characteristics of
these programs include insufficient planning; political pressure (to respond quickly,
use.specified messages, and/or to use a political figure in the campaign); unrealistic
expectations (for example, behavior change) of mass media programs by leadership
or policy makers; inadequate resources and short term commitments. These are
characteristics that contribute to failure.

Other shortcomings of public service campaigns observed by these authors include
a small number of PSAs, of uneven quality, and scattered exposure. They note
that PSA campaigns can be effective given certain conditions, including effective
messages, widespread usage, high saturation, and endurance.

Findings from Community-Based Research

In addition to the findings from analytic studies, it is important to note the
comparable findings from landmark community-based research. The Stanford
Three Communities study, conducted in the 197Os, demonstrated that the use of
the mass media could positively affect the health of a community, and that a
combination of mass media, interpersonal contact and social support is even more
effective. In one community, where only mass media was used to communicate
how to reduce personal risks of cardiovascular disease, a 17 percent reduction in
the targeted risk factors (smoking, blood cholesterol, blood pressure, and weight)
was noted. In a second community a more intensive intervention was undertaken,

17


adding personal instruction about risk factor reduction and strategies to increase
social support to.mass media messages. In this community, a 30 percent reduction
in cardiovascular risk. factors was found in one subpopulation. In a third
community where there was no program, measures of risk factors found a 6
percent increase (19).

Follow up community-based research and demonstration field trials have been
sponsored by the National Heart, Lung, and Blood Institute for the past 10 years
(the Stanford Five City Study, the Minnesota Heart Health, Program, and the
Pawtucket Heart Health Program). These programs blend principles from health
promotion, psychology, community theory, and. social marketing, and all are
designed as behavior change models. Some of the multiple strategies used by
these community programs that have broad applicability include the involvement of
community leaders and organizations; use of incentives and environmental change
strategies; health professional education use of programs easily adaptable to fit the
interests and needs of a specific target group; the use of volunteers for community
acceptance and cost effectiveness; and media partnerships with media outlets,
business, and the medical/insurance com,munity. (20).

CASE STUDIES: APPLICATION OF LESSONS LEARNED

To illustrate how the theories, models, and applied research findings summarized
here have been incorporated into national programs, six case studies are described:

The National High Blood Pressure Education Program -- which serves as a
model for many other health behavior change programs.

The National Eye Health Education Program -- a new program that is
applying lessons learned from the high blood pressure model.
0

The Office on Smoking and Health mass media program -- an example of
effective use of limited educational resources.

The National Highway Traffic Safety Administration (NHTSA) passenger
safety programs -- a model that includes information, education, legislation,
and enforcement strategies.

The Healthy Mothers, Healthy Babies and Healthy Older People Coalitions --
two health promotion programs that chose coalition building as the primary
focus.

The National Blood Donor Experience -- a review of parallel issues with
relevant lessons about what motivates donors.

16


A Long-Term Multifaceted Approach -- The National
   High Blood Pressure Education Program

By 1972, results had accumulated from several clinical studies showing that
reducing high blood pressure reduced the risk of cardiovascular disease. Congress
passed the National Heart, Blood Vessel, Lung and Bloob Act, which called for
(among other things) providing risk reduction information for the public and health
professionals (21).

As one result, the National High Blood Pressure Education Program (NHBPEP) was
established as a cooperative program between. the National Heart, Lung, and Blood
Institute (NHLBI), one of the National Institutes of Health, and other national
health-related organizations. A coordinating committee now consisting .of
representatives of more than 35 national voluntary, professional, and public health
agencies was established. Nearly 20 years later, the program continues to follow a
program development process based on consensus-building. The program includes
three interrelated components -- a health care provider program, a mass media
program, and community-based activity models.

For the mass media program, the target audiences and messages change as
changes in knowledge, attitudes, and behavior occur. Messages and motivational
strate.gies are based on communication research and extensive pretesting. Public
service announcements and media programming are developed for community
"tagging" (identification) and ongoing news media relations promote coverage to
keep high blood pressure visible to the public (22). About $900,000 is budgeted
for the mass media components of all NHLBI programs each year, with NHLBI staff
support of two professionals (23).

Almost 20 years after this program started, nearly everyone knows that high blood
pressure increases the risk of heart disease (91 percent) and that it cannot be
cured, but can be controlled by staying on treatment (92 percent). More
important, the age-adjusted stroke mortality rate has declined by more than 52
percent since 1972 (22).

Replication of NHBPEP -- The National Eye Health Education Program

The National Eye Health Education Program is an example of how the NHBPEP
model is being applied to another health issue. The National Eye Institute is
another of the National Institutes of Health. In fiscal year 1988 new language in
the National Eye Institute's (NEI) appropriation from Congress called for a large-
scale national public and health professional education program, and designated
approximately $1.5 million per year for this purpose (24).

19


In 1989, the Institute sponsored a national planning conference bringing together
representatives from 35 public and private sector organizations to set priorities for
information and education related to two designated eye health issues: diabetic
eye disease and glaucoma; Conference participants recommended target
audiences needs and priorities, as well as information and education strategies to
meet these needs. These groups have since agreed.to become part of the National
EYe Health Education Program (NEHEP) Partnership to establish an ongoing,
interactive relationship between the NEI and other organizations concerned with
eye health (25).

The NEI coordinates the Partnership program, and facilitates communications
between the Partnership members; develops and distributes mass media and other
materials; and identifies program strategies and policies. The Program "belongs" to
the NEHEP Partnership -- health professional associations, voluntary, health, civic,
and other public sector organizations. These organizations provide endorsement,
resources, and linkages to community-level health care providers and organizations
to promote eye health messages. Drug companies, equipment manufacturers, and
other corporations also are being invited to participate.

An advisory committee representing the Partnership members reviews all draft
messages for accuracy and appropriateness, and a formal health communications
model (26) is followed to plan, test, implement, and evaluate the program.

In early 1991, the NEHEP again sponsored a national conference to share the
results of target audience research, to introduce plans for the release of results of a
national public knowledge, attitudes, and behavior baseline survey cosponsored by
one Partner (Lions Clubs International), and to seek endorsement for prototype
materials for national mass medih campaigns and health education programs with
community support. Recommendations of the Partnership members are being
incorporated into the program, and long range strategic planning has begun (24).

Use of the Mass Media -- The Office on Smoking and Health

The Office on Smoking and Health (OSH), Centers for Disease Control, serves as
the focal point for Federal tobacco control activities. One significant function of
the Office is the communication program, mandated by 1984 legislation. A staff
of four is responsible for press relations, mass media campaign development,
development of other educational materials, marketing and distribution, and public
inquiry response; in addition, an advertising agency contract averages about
$700,000 per year (27).

A number of organizations have a long history and an established role in tobacco
control. Therefore, the challenge to OSH.was to carve out an appropriate,
effective, and affordable communication function. Because no national agency

20


was committed to maintaining a relationship with the mass media on this topic,
OSH chose this function.

Plans for new campaigns are reviewed by representatives of national agencies and
organizations with an interest in tobacco control and State health departments.
The Office frequently co-produces public service announcements (PSAs) and
related materials for distribution by other national organizations or Federal
agencies; materials are offered once a year to State health departments for
distribution with their own credit lines.

OSH has a reputation for creative, high-quality PSAs. Together with a concerted
PSA marketing program (including personal delivery to.television stations in large
media markets and follow-up telemarketing), OSH has been able to keep a fair
share of the available PSA time, even with very strong competition fro'm issues
including drug abuse and AIDS (28).

Broadcast Advertisers Reports (BAR), a service that monitors the airing of
commercials on television, estimates that between 1983 and 1987, when OSH
released twelve television PSAs, these spots were shown more than 48,900 times,
about one-third in prime time. This is comparable to an advertising expenditure of
$9 million, or about $1.8. million per year. It is estimated that up to 64 percent of
the total population in these markets was exposed to OSH antismoking PSAs in
any month of a given year (28).

However, BAR reports also show that the amount of public service time available
from stations is decreasing. OSH is turning to alternative strategies including
reaching youth through classrooms, coaches, and gym boards (locker room
advertising); placement in specialty. magazines; and regional and community-level
strategies including media advocacy. (Because of tobacco advertising in
newspapers and magazines, opportunities for the promotion of antismoking
messages through the print media are extremely limited.)

The Office selects three target audiences for the three waves of media materials
released each year -- for example; youth (to prevent uptake of smoking), pregnant
women and new parents (to encourage smoking cessation), and middle-aged
smokers (also to encourage cessation). Within each of these broad demographic
categories, more specific groups are targeted; for example, campaigns produced
this year will focus on African Americans (29). New strategies will address
building support for tobacco control within African American communities.

OSH routinely commissions market research to identify changes in tobacco-related
habits, specific.motivational appeals, and changes in media habits of the target
audiences. Appeals and selection of media outlets are tailored to fit each target
audience. All educational materials are pretested with target audiences. Market

21


research findings are summarized as principles to guide the development of
messages and materiels. For example, OSH follows these principles to target
youth:

o

o

o



o

?

?

o

?

the use of celebrities to appeal to teens is ,troublesome because of the risk
of inappropriate behaviors on the part of the celebrities, and the very rapid
shifts in celebrity popularity among teens; spokespersons who are perceived
as "like me" are the most acceptable to adolescents.

teens say that they want to be "scared,`" but message pretesting has
demonstrated that they are more likely to respond to positive `appeals.

peer acceptance and peer approval are strong motivators.
lighthearted appeals, animation, and humor must not appear juvenile or the
messages will be rejected.

appeals to adolescents vary according to the specific group targeted (e.g.,
as segmented by age, interest, ethnicity, gender, or "clique").

teenagers can be very critical of appeals and production values they consider
out-of-style -- often by the time mainstream America accepts a teenage fad
or style, it is considered outmoded by its originators.

production values must "stand'up" to the strict and constantly shifting
standards of teenagers who are accustomed to MTV.

anti-smoking appeals must compete in the marketplace with tobacco
advertising supported by millions of dollars in market research and purchased
space. (27)

OSH has found that television stations are very eager to receive PSAs appropriate
for children and teens which they can use in the non-prime time slots (e.g.,
afternoons and Saturday morning) when a large proportion of the viewing audience
falls within this age range.

The Office on Smoking and Health, given limited resources to communicate and a
national mandate, chose to concentrate primarily on the use of mass media.
Because other health agencies and voluntary organizations have community-level
outreach capabilities, OSH materials are often integrated into broader, local
programs. OSH considers this strategy to be cost effective, but foresees a need to
move away from a reliance on dwindling public service time in the future.

22


Coalition Building -- Healthy Mothers, Healthy Babies,
     and Healthy .Older People

Summarized here are two Public Health Service programs that emphasize coalition
building as a primary strategy to educate the public ,about health. These programs
offer a different model for program development from the NHBPEP model, based
on the same behavior change and communication principles.

Participants at the Surgeon General's Workshop. on Maternal and Infant Health held
in December 1980 identified a need to form strong linkages between individuals
and groups concerned about maternal and infant health in order to increase public
awareness and support for policies and programs., A small planning group
representing the Public Health Service and several national voluntary arid health
professional organizations met to outline strategies for establishing a coalition for
this purpose. A planning conference was held to identify needs, coalition
functions, and priorities; as a result of the conference, 35 national organizations --
governmental, voluntary, and health professional .-- agreed to work together and
the Healthy Mothers, Healthy Babies Coalition was begun (30).

From the beginning, it was apparent that there would be scant financial support for
this effort; one strong motivation for coalescing was a need to increase support for
maternal and infant policies, funding, and programs. Therefore, the functions of
the Coalition (which, 10 years later, counts more than 90 national organizations as
members) are to share information, identify issues that can be addressed by all or
clusters of member organizations, and provide a network to facilitate organizational
sharing and collaboration. Many of the national organizations involved have
community or State-based chapters, and an early Coalition initiative fostered the
formation of independent but related State-level coalitions. Almost all States now
have such coalitions; each with a different structure and function.

The national coalition is informal; it was not incorporated until 1989. It was
managed by the Public Health Service for the first 5 years, with an annual budget
of $75,000 supplemented by staff and funding support from several PHS agencies
(identifying that participation would benefit their own programs). Since the mid-
1980s the coalition has been maintained by a staff of two, housed within the
American College of Obstetricians and Gynecologists and supported by a small
Health Resources and Services Administration (HRSA) grant (through HRSA's
Bureau of Maternal and Child Health) averaging about $130,000 a year (31). No
media activities are developed by the Coalition; instead, the materials and
programs of its members are promoted (3.2).

The Healthy Older People program was sponsored from 1985 through 1989 by
the Office for Disease Prevention and Health Promotion to encourage health
promotion among older adults (33). During a 3-l/2 year campaign, approximately

23


$1 million and two professional staff (part-time) were assigned to this program. A
primary focus was the establishment of State-level coalitions to link the health and
aging networks that have traditionally, been funded and operated separately. Of
the more than 40 States that particip.ated in the health promotion program, which
included both mass media and community activities, 35 developed Healthy Older
People Coalitions. Each developed their own activities; some have continued past
the end of the national campaign.

Lessons have been learned about coalition- building from these efforts, including the
importance of investing in the development of the coalition- structure, and in
coalition support. Support may include the development of mass media and other
educational materials, or other activities that offer an incentive for widespread
involvement.

Each of these coalitions was founded in cooperative priority-setting and.planning,
with the Public Health Service offering support and initial leadership. Also
important were the establishment of minimum standards and guidelines, early
agreement that credit and ownership would be shared, and agreement regarding
the role of private sector support.

Important benefits have resulted from the investment in coalition building, including
ongoing linkages between organizations, broad "ownership" of and sponsorship for
programs, and leveraged resources, including broad use of volunteers to support
program activities. Most significantly, these coalitions have provided a level of
attention to and involvement in their issues, over a longer period of time, than
could have resulted from Federal sponsorship alone.

The Role of Legislation -- Safety Belt and
    Child Restraint Programs

Fewer than 12 percent of drivers, and approximately 20 percent of children under
age 5 were using safety restraints in motor vehicles in 1982 (34). The National
Highway Traffic Safety Administration, U.S. Department of Transportation (DOT),
estimated that approximately half of all highway fatalities could be prevented if all
passengers were properly restrained, and called for a combination of public
information, education, incentive, and use requirement programs to be
implemented by a network of organizations to significantly increase the number of
restraint users. Criteria for these efforts included specific audience targeting;
comprehensive programs designed to reach large numbers of people; conducted
over a substantial period of time (34).

Reasons and excuses given by the public for not wearing belts include
inconvenience, discomfort, laziness, fear of entrapment, and forgetfulness.
Factors believed to underlie these reasons include a perceived lack of vulnerability,

24


lack of understanding of the efficacy of use, misinformation, lack of established
habit; and negative attitudes toward use (34).

In 1984, DOT recommended the passage of State laws mandating the use of
restraints as the most cost effective measure. At the same time, DOT recognized
that neither legislation nor increased usage would likely.occur without public
information, education, and incentive programs; the greatest attitudinal obstacle to
legislation was identified as "intrusion into the family." Since 1985, all 50 States
and the District of Columbia have enacted laws requiring that young children ride in
safety seats or belts. The combined effects of these laws, law enforcement, and
public eduction has resulted in a child safety. seat use-rate of 84 percent (1990)
(35).

By 1990, overall safety belt use had risen to 49 percent. Safety belt use in cities
with belt use laws was 52 percent; in cities without laws, 36 percent. The safety
belt usage rates in States with laws in effect ranges from 33 to 80 percent. This
variation reflects factors such as differences in public attitudes, enforcement
practices, legal provisions (penalties), and the availability of public
information/education programs (35). The Department has set a national goal to
reach 70 percent safety belt usage by 1992 (35).

To reach this goal, NHTSA has developed a comprehensive program including
media messages, educational and incentive efforts with other organizations,
encouragement of organizational use policies, and research, development, and
evaluation. The types of national-level. organizations involved have included
education, health, medical, civic, safety, and media. NHTSA also works through
State offices of highway safety; providing technical assistance and materials. ItI
turn, these State offices develop networks within their States (35).

Program components include a public service mass media campaign of long
duration, promotional events such as an annual "Buckle Up America!" week,
collaboration with national organizations, coordination through State highway
departments, and intensive efforts to support organization and activities at the
community level.

At the community level, involvement of law enforcement agencies is strongly
promoted both to enforce laws, and to conduct educational activities. Involvement
of a wide range of others within the community is encouraged, including school
administrators and teachers, physicians, judges, legislators and other public
officials, parents, employers, media, tavern and restaurant owners, pharmacists,
and attorneys.. Many communities develop committees or task forces representing
these sectors. Recommended strategies for community-based programs include
using a mix of public information and mass media, education and incentive
programs, with requirement policies or law enforcement. Principles underlying

25


community efforts include identifying; integrating, and coordinating the roles and
resources of all community sectors. Public information, education, enforcement,
and prosecution should be interdependent parts of an operating community system
addressing the issue; establishing programs that are comprehensive, coordinated,
and sustained are necessary to assure a lasting effect. Social norms must change
to ensure long-range success. Such change can be ac.complished through a
comprehensive community-wide approach over a long period of time (36).

The NHTSA program demonstrates the value of including policy change strategies
in programs that ultimately aim for behavior change by individuals. This program
also shows that no one strategy, including laws that mandate behavior, can
guarantee that change will occur.

Understanding the Public -- Blood Donors and Their Motivations

The National Research Council (NRC) recently completed a review of the U.S.
blood supply, as one part of a larger study to look at the effects of HIV/AIDS on
our society (37). Summarized here are findingsfrom that report, related to who
donates blood, motivation and barriers to donation, and special efforts to recruit
minority donors. This case study is presented to demonstrate the value of
identifying and conducting research to understand potential donors. Although
there are obvious differences between blood and organ donation, some of the
donor motivations and barriers identified here could be investigated for relevance to
organ donation.

There are two separate blood collection systems in the United States. A
commercial system pays donors for plasma, and a voluntary system collects whole
blood. An all-volunteer system'for whole blood collection has been nearly universal
in this country since 1975   " . ..to prevent the intrusion of undesirable factors (e.g.,
financial remuneration) into motivations to donate blood" (37). The American Red
Cross collects about half of the whole blood; the American Association of Blood
Banks, members of the Council of Community Blood Centers, and independent
hospital blood banks account for the rest. About 80 percent of blood is collected
at mobile sites. Blood drive recruitment is through high schools and colleges, and
worksites (including businesses, local government offices, and public sector
organizations) (37).

It is estimated that about half of the adult,population should be eligible to give
blood (37). According to a 1984 survey, about 8 percent of men and 5 percent of
women reported that they had given blood in the past 12 months (38). Most
blood comes from repeat donors. Women predominate among first time givers;
men are far more likely to be repeat donors.  Less than one-third of those who

26


have given a gallon or more are women. It is possible that the fewer numbers of
women donors in the repeat donor category `may be related to physical condition
(e.g., low hemoglobin levels) rather than a lack of motivation (37).

Most donors are between 20 and 40 years old; adults in their 60s account for only
2-3 percent of all who donate (37). Apparently whites `(41 percent of whom said
that they have donated at least once) are more likely to donate than are blacks (32
percent) based on self-reported information (38). In response to one recent
survey, 4 percent of blacks in comparison with 7 percent of whites said that they
had donated within the last 12 months (38).

Frequent donors tend to have higher incomes than nondonors, and higher
educational levels than occasional or nondonors. Blue collar and clerica! workers
are less likely to donate than those with managerial, professional, and technical job
titles.

Reasons given for donating include altruism (e.g.., emotional satisfaction, heroic
feelings, heightened self-esteem); social pressure (e.g., worksite drive, personal or
telephone request); a need within their community (strongest when there is
community support for donation); personal experience with a need for transfused
blood (friend or family member); getting a "medical exam," and blood typing or
cholesterol testing (sometimes offered) (37).

The motivational force of altruism is not clear, but altruism alone may not be
sufficient to motivate individuals to donate. Research (37) suggests that additional
incentives (e.g., competition, discount coupons, raffles) result in greater donation
rates. However, one researcher concluded that "only some people report donating
for a reward, such as money, or time off from work; for most donors, reward does
not appear to be a major motivational factor" (39).

Interestingly, one study found that respondents did not consider mass media
appeals as "having been asked" to donate (40). Additional research would be
needed to identify to what extent combining mass media and personal interaction
strengthens motivational appeals.

Factors that appear to inhibit blood donation include medical ineligibility (actual,
perceived, or rationalized); fear (e.g., of pain, needles); physical reactions from
previous donation experience; apathy; and inconvenience (time, delays,
inconvenient collection hours or location, lack of privacy) (37). Similarly, apathy
(3) and fear also appear to be barriers for organ donation (4).

One study (41) reviewed in the NRC report describes a four-stage process to
increase the number of blood donors. First, identifying negative attitudes among
potential donors and developing messages to shift or neutralize those attitudes.

27


Second, developing motivational appeals b.ased on internalized motives,, focussing
on "self concepts". of potential donors. Then, working to achieve behavioral
intentions to donate as a next stage towards behavior change related to donation.
Finally, encouraging donation as a habit, to reinforce and reward donation
behavior.                                        

Recommendations are included-in the NRC report for increasing the number of
blood donors. `These recommendations are based upon research findings of
barriers and incentives to donate and reflect,the principles of effective program
design (as summarized earlier in this paper). Recommendations for increasing the
number of black blood donors, for example,. include. using community-based social
networks, appropriate role models, and convenient donation locations. More
specifically, this report recommends :

o

o

0

recruiting at worksites employing large numbers of minorities; use of
minority volunteers.

recruiting on college campuses through a black fraternity and/or a black
caucus.

making donation relevant to blacks (e.g., point out blood needs among the
African American population).

tying in with Black History Month or other pertinent events.

offering sickle-cell screening at the donation site.

involving African American community leaders in planning and as
spokespersons (37).

Although there are salient differences between blood and organ donation, some of
the motivations, and barriers to motivation, may be similar. A more thorough
review of motivational studies-related to blood donation would identify strategies
that could be tested for application to increasing the number of organ donors.

Application of Lessons Learned

These model practices add to the lessons learned for application to organ donation
programs:

1.   In addition to broad program goals, focusing on achievable intermediate
  objectives such as public knowledge or community capacity-building, helps
   direct program activities. Including evaluation measures to track progress
  permits revision of program strategies as objectives are met.

28


2.

3.

4.

5.

6.

7.








8.






9.

More successful programs commit significant resources to program planning
and development and plan campaigns of extended duration; many have long
range strategic plans.

A prerequisite to developing a successful program is market research to help
identify target audiences. Additional. market research with those audiences
is needed to explore barriers and incentives to behavior change (organ
donation). Motivational strategies and messages are built upon these
perceptions of the target audience.

Formative evaluation (message and materials testing) is essential to
producing messages and motivational strategies that will work. .,

Stronger programs result from working with other organizations or systems
that can contribute complementary strengths (such as ties to and credibility
with target audiences); coordination begins at the earliest program
development stages.

Despite heavy competition for a finite amount of television public service
time, it is possible to access sufficient time to reach significant numbers of
.viewers. To be effective, programs must produce high quality PSAs, market
them to stations, localize (through local tagging and hand delivery) where
possible, and target PSAs to audiences that can be reached when public
service time is available. Many programs combine PSAs with other
strategies (e.g., news relations) to increase message exposure through the
mass media.

Legislation to mandate a behavior may be one useful strategy, in context
with programs to build and maintain public support, educate and provide
skills to target audiences. Legislation alone, without supportive strategies,
such as incentives, penalties, and enforcement, is not likely to change
behavior.

Coalition building can contribute.to establishing a broad base of program
support (at national, State, and community levels), leverage limited
resources, assure consistent messages and strategies, and help assure
attention to an issue over time.

Comprehensive, multifaceted, long-term programs, addressing individual
change and those factors that support or block that change (including health
care provider behavior) are more likely to produce significant changes in
behavior.

29


SUMMARY OF RECOMMENDATIONS: THE DESIGN OF A CAMPAIGN TO
       INCREASE THE NUMBER OF.ORGAN DONORS

Based on studies reported in the literature and the experiences of other public
health and safety programs, it appears that information and education programs
can contribute to increasing the number of organ donors given sufficient resources,
io;jger term commitment, and adequate campaign planning and development.

Such a program should engage the mass media, community, and interpersonal
communications (especially within the family). A, communications program should
be positioned within a broader program that addresses other essential components
of change such as health care provider behavior,. social norms, supportive policies,
and systems that block or support behavior change,

Recommendations for developing such a program include:

1. Strategic Planning:

Planning for an organ donor campaign should begin with a longer term commitment
and strategic decision making that includes:

0  .measurable objectives representing intermediate progress towards program
  goals.

a  multiple strategies based on behavior change and other relevant models and
  theories, lessons learned from previous organ donor, blood donor, and other
  health and safety campaigns.

2. Role of the Mass Media:

Use of the mass media can be one way to effectively support increased organ
donation:

a  mass media strategies can increase and maintain individual and societal
  support for organ donation and can promote other program components.

0  mass media campaigns should focus on media outlets matching the habits of
  target audiences, and be integrated with community outreach and health
  systems support.

0  the use of public service announcements should be considered as part of a
  mix of mass media strategies.

30


0  competition for media time and space, target audience attention, changes
  occurring both within the medi.a industry and in the media habits of the
  public should be considered when making decisions about the most
  appropriate uses of the mass media.

3. Target audiences:

Decisions about which specific population groups will be targeted are a prerequisite
to the development of effective motivational strategies:

a  once defined, market research should be conducted with them.to build upon
  what is more generally known about barriers and incentives to organ
  donation, and to research motivational appeals with the most potential for
  promoting change.

0  in addition to current knowledge, attitudes; and behavior, other contextual
  issues must be considered in designing motivational appeals for specific
  audiences, including family and cultural traditions, socioeconomic factors
  that affect an individual's willingness and capability to accept change,
  community customs and social norms, religious and political influences, and
  perceptions of the health care system.

4. Message and Strategy Development:

The practice of social marketing, as applied by other health programs, will help
guide effective message and strategy development:

a  developing motivational messages and strategies should be based on the
  findings of market research conducted with target audiences.

a  developing strategies to increase social support for organ donation and
  health care provider behavior are needed in addition to strategies to motivate
  individual and family change.

0  communications strategies should be interwoven with strategies to address
  institutional, policy, and other barriers to donation.

o  pilot studies or other tests of new programs can help identify needs for
  refinement before more extensive resources are committed.

5. Program Promotion and Marketing:

In order to produce change, programs must be carefully developed and tested, but
effective promotion and marketing of those strategies are equally necessary:

31


o  marketing strategies should be planned to assure adequate target audience
exposure to-messages through the mass media and through community
   programs.

0  adequate message exposure is a prerequisite to having an effect; both
  repeated exposures and exposure over time are needed.

6. Evaluation:

While the most critical measure of success is an increase in the number of donated
organs, intermediate measures are needed to track progress and make any program
adjustments needed to reach that goal:

0  formative (message and materials pretests) evaluation should be an integral
  component of program development.


0  process measures are both affordable and necessary.


0  some outcome measures (such as tracking changes in target audience
  knowledge, attitudes, behavioral intentions, and behaviors) also are needed.

o  evaluation measures are most useful if the results are used to refine program
  strategies.

7. Coalition Building:

To help assure optimal program success, collaboration and coordination at the
national and community levels should be given serious consideration:

consider including health professional associations, health service
organizations, government agencies, national organizations with a
community focus (social, fraternal, civic, and religious) that have credibility,
access, and influence with potential donors.

involve relevant organizations in the planning process and focus on
establishing and nurturing linkages at national, State, and local levels.

include mechanisms to facilitate information sharing between participating
organizations to help maintain networks.

consider appropriate roles for the for-profit sector (such as major employers,
medical services, drug and equipment manufacturers).

32


8. Legislative Initiatives:

Legislation can contribute in several ways, including:

0  giving a mandate and resources to the Federal government to develop
  programs to motivate and support increased'donation.

0  mandating certain behaviors,.which can be useful as one of many change
  strategies, given related educational, incentive, and enforcement efforts.

9. Localization:

Both national leadership and community involvement are needed:

0

0

0

111

12)

(31

141

15)

(6)

nationally developed programs can be cost effective, but should be flexible
to permit local tailoring to fit specific audience needs, as well as the
religious, cultural, and other traditions and ethnic patterns of the community.

policy makers, health care providers, and others who can facilitate or hinder
the donation process can be the target of both national and local efforts.

changing social norms in support of organ donation will require community
involvement.

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Caplan A, Siminoff L, Arnold R, Virnig, 13. Increasing Organ and Tissue Donation: What are
the Obstacles, What are Our Options? Draft paper for Surgeon General's Workshop on
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Oberle y ET, et al. Public Education in Oman Donation. In draft. Madison, WI: Medical
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Fishbein M, Ajzen I. Belief, Attitude. Intention and Behavior. Reading, MA: Addison-
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Rogers EM. Diffusion of Innovations. New York, NY: Free Press; 1983.

33


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Kotler P, Roberto EL. Social Marketing. New York, NY: The Free Press; 1989.

Levinson JC. Guerilla Marketing. Boston, MA: Houghton Mifflin; 1984.

Cutlip SM, Center AH. Effective Public Relations. Englewood Cliffs, NJ: Prentice Hall:
1972.

Office for Substance Abuse Prevention. Health Communications and Social Marketina in
Alcohol and Other Druo Prevention. Unpublished training course; 1990.

National institutes of Health. Media Strateoies for Smokina Control. Bethesda, MD: 1988.

Atkin CK. Research Evidence of Mass Mediated Health Communication Campaigns.
Communication Yearbook 3. New Brunswick, NJ; Transaction Books; 1979.

Backer TE, Rogers EM, Sopory P. Comparative Synthesis of Mass Media Campaigns for
Health Behavior Change. Office of Substance Abuse Prevention. Rockville, MD: 1990.

Swinehart, J. Aty
198 1.
Safety. DOT HS-805-954 National Technical Information Service:

Flay BR. Mass Media and Smoking Cessation: A Critical Review, in American Journal of
Public Health. Vol 77 No. 2 Feb 1987.~~ 153- 161.

Dejong W, Winsten JA. Recommendations for Future Mass Media Campaigns to Prevent
Preteen and Adolescent Substance Abuse. Center for Health Communication, Harvard
School of Public Health, 1989.

Office of Disease Prevention and Health Promotion, Prevention BS/SO, Washington, DC;
1990.

National Heart, Lung, and Blood Institute, Three Community Proarams Chanae Heart Health
Across the Nation. Bethesda, MD; 1990.

Ward, GW, Rocella EJ. The National High Blood Pressure Education Program: A
Description of its Utility as a Generic Program Model, Health Education Quarterlv.  Vol 11
131 225-242 Fall 1984.

Bellicha T, McGrath J. Mass Media Approaches to Reducing Cardiovascular Disease, Public
Health Reports. Vol. 105 (31. 245-252 May-June 1990.

Personal communication, National Heart, Lung, and Blood Institute.

Personal communication, National Eye Institute.

National Eye Institute. Plannina the Partnership, Bethesda, MD 1990.

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126)   National Cancer Institute. Makin H Ith
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    1989.                                      

1271  Office on Smoking and Health. Communications Plans. Unpublished document. Rockville,
    MD; 1990.

(28)  Pierce J, et al. Promoting Smoking Cessation in the United States:  The Effect of Public
   Service Announcements on the Cancer Information Service Telephone Line, unpublished
   manuscript. Rockville, MD: Office on Smoking and Health; 1990.

1291  Office on Smoking and Health. u
   Tobacco Con trot Messaoes. Unpublished document. Rockviile, MD: 199 1.

(30)  Arkin EB. The Healthy Mothers, Healthy Babies Coalition--A Joint Private-Public Initiative,
   Public Health Reoorts. Vol97 16) 503-509 Nov-Dee 1982.

(3 II  Personal communication, Bureau of Maternal and Child- Health.

1321   Arkin EB.  The Healthy Mothers, Healthy Babies Coalition: Four Years of Progress, Public
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1331  Office of Disease Prevention and Health Promotion. Healthy Older Peoole. Washington,
    DC; 1990.

1341  Nichols J.  Effectiveness and Efficiency of Safetv Belt and Child Restraint Usaae Proarams.
    DOT HS-806- 142 National Technical Information Service 1982.

(351  National Highway Traffic Safety Administration. Idea Sampler. Buckle-Uo America.
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(361  National Highway Traffic Safety Administration. Shiftina into Action: Youth and Hiohway
   Safety. Washington, DC; 1985.

137)  Miller HG, Turner CF, Moses LE. AIDS The Second Decade. Washington, DC: National
   Academy Press; 1990.

(38)  Dawson DA. AIDS Knowledge and Attitudes for January-March, 1989, in Advance Data
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(39)   Oswalt RM. A Review of Blood Donor Recruitment and Motivation. Transfusion. ?7:?23-
    135. 1977.

(40)  Condie SJ.  When Altruism Fails: The Logic of Collective Action and Blood Donor Behavior,
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   Commitment to Regular Blood Donation, in Staub E. et al. pevelopment and Maintenance
   gf Prosocial Behavior: International Perspectives on Positive Morality. New York, NY:
    Plenum Press; 1984.

35



ON THE USE OF MASS COMMUl)jlCATlON$ TO PROMOTE
           THE PUBLIC HEALTH

VWiam DeJong, Ph.D., Department of Health and Social Behavior, Harvard School
of Public Health

A key to continuing the improvement in Americans' health is the public's adoption
of healthier lifestyles. Changes in lifestyle can be made only by a well-informed
and motivated public. As a result, the mass media, as never before, have a vital
role to play in advancing the public health.

Even in the case of diseases with a known biological cause, such as AIDS, choices
in lifestyle and behavior can mean the difference between living and dying. Thus,
when confronted in the 1980s by the menace of the AIDS epidemic, U.S. public
health officials turned to the mass media as a means of quickly educating the
American general public about the disease and appropriate prevention measures
(DeJong & Winsten, 1991).

Beyond promoting changes in individual behavior, the mass media have an equally
vital role to play in directing the public agenda to important health issues,
reinforcing community-based programs, and building support for changes in
institutional structures, public policy, or law that will support and sustain the
efforts of individuals to alter their behavior.

Learning from both the successes and failures of past mass communication
campaigns, public health advocates begin the 1990s with a renewed enthusiasm
for using the mass media to promote the public health. Such enthusiasm will be
heard at the Surgeon General's Workshop as participants debate how our nation
can increase the number of organ transplantation donors. To help inform this
debate, this background paper explores in general how public health advocates can
effectively harness the power of the mass media.

TH R L
3
       FMA
EVOLVING VIEW

When the broadcast media emerged after World War II as a major force in
American society, and as commercial advertising brought new sophistication to
satisfying post-war consumer appetites, many public health advocates assumed
that the presentation of factual information through mass communication
campaigns would automatically result in changed attitudes and improved health
behavior (Atkin, 1979; Griffiths & Knutson, 1960).

37


Subsequently, when several mass media campaigns produced disappointing results
(e.g., Hyman & -Wheatsley, 1947; Star & Hughes, 19501, this boundless optimism
was replaced in the `1950s and 1960s by a decidedly more pessimistic view that
the strategic use of mass media is doomed to failure (Atkin, 1979, 1981). It was
recognized that mass communication campaigns could reinforce existing attitudes
and behavior (Alcalay, 1983; Schlinger, 19761, but this outcome was viewed as
being the most that could be achieved (Klapper, 1960). Little more could be done,
it was argued, because the audience will choose to attend to and retain
information that supports existing opinions (Bauer, 1964; cartwright, 1949), and
because it will employ various psychological defenses to fend off ego-threatening
information (Bauer, 1964)`.

Skeptics noted that the apparent success of commercial advertising provided a
misleading example, for the simple reason that influencing people's health-related
behavior presents a far greater challenge than influencing their brand preferences
(Griffiths & Knutson, 1960; Rehony, Frederiksen, & Solomon, 1984). Several
considerations supported this skeptical view.

First, because of the widespread behavioral changes needed to bring about
significant improvements in public health, health promotion campaigns must
establish more ambitious objectives, even while usually having fewer financial
resources. In contrast, commercial marketing campaigns are considered a
tremendous economic success when they result in even a 1 percent increase in
market share (Rosenstock, 1960; Schlinger, 1976).

Second, the behaviors that public health advocates seek to change are often
ingrained habits or have accrued a cultural meaning or emotional sig.nificance that
fortifies a resistance to change (Robertson & Wortzel, 1971). In contrast,
commercial advertising is seldom designed to inculcate new attitudes or patterns of
behavior, but to heighten and give direction to already existing attitudes and
preferences (Lazarsfeld & Merton, 1971; Rosenstock, 1960; Wiebe, 1951).
Moreover, while many of the benefits of health maintenance and disease
prevention are delayed and uncertain, product consumption affords tangible and
immediate gratification (Lefebvre, Harden, & Zompa, 1988; Schlinger, 1976).

Third, the very people who would be most responsive to a public health campaign
may have already made the desired changes, leaving a target group of so-called

   ' For addressing some health problems, however, the reinforcement of existing attitudes and
behavior is precisely what is needed (Bauman, Brown, Bryan et al., 19881. When they are on the
threshold of junior high school, nearly all children express a strong disliking for alcohol, tobacco,
and other drugs and indicate that they do not intend to use them (DeJong, 19871. A key to
prevention strategies, therefore, is to find ways to bolster those behavioral intentions as the
children grow older.

38


"late adopters" that is much more difficult to persuade (Bloom & Novelli, 1981;
Green, Kreuter, Deeds, & Partridge, 1980; Green & McAlister, 1984; Kasl,. 1980).
In many cases, that target group enjoys good health, at least currently, and this
too diminishes their motivation to change, especially when such change is difficult
to accomplish, painful, inconvenient, or expensive (Rosenstock, 1960). In
contrast, commercial marketers try to reach consumers who are likely to want their
product and can afford it (DeJong, 1989).

Finally, Wallack (1981, 1990a) notes that U.S. health campaigns often take place
in a relatively hostile environment created by strong economic interests. For
example, tobacco and alcohol advertisements encourage consumer indulgence,
which undermines the less appealing messages of prudence and restraint offered
by prevention education (Jacobson, Atkins, & Hacker, 1983)*. Beyond..that,
tobacco and alcohol companies, abetted by a financially vulnerable media, have
limited the public's exposure to information about the long-term consequences of
alcohol and tobacco use (Gerbner, 1990; Hacker, Collins, & Jacobson, 1987;
Warner, 1985; Warner 81 Goldenhar, 1989; Weis & Burke, 1986) and sometimes
exert political pressure to disrupt prevention campaigns (e.g., Wallack & Barrows,
1982-83).

This restricted vision of what mass communication campaigns can accomplish was
reluctantly embraced by most public health advocates. One reason is that it
contravenes the common wisdom that the mass media, especially television, exert
enormous influence over our ideas, values, and behavior (Gerbner, 1987; Roberts
& Maccoby, 1985). Moreover, both broadcast and print media are a cost-efficient
way of reaching millions of people with tiealth messages (Gerbner, 1987; Warner,
1987). Indeed, previous studies that were said to support a circumspect view of
mass communication campaigns often focused on proportional success rates with-
out taking into account the large audiences that mass media can have (Flay &
Sobel, 1983; Warner, 1987).

By the 1980s a new view had evolved. The current perspective on mass
communication campaigns is more balanced, based on the growing recognition that
when long-term mass communication campaigns are designed and executed
according to certain principles, they can play a meaningful role in changing health-
related behavior and lifestyles (DeJong & Winsten, 1990a). The power of the
mass media to effect behavior change is less dramatic than once hoped (or feared),

   ' In several foreign countries (e.g., Austria, Norway, Greece), all forms of cigarette advertising
have been banned, end the governments have launched vigorous anti-smoking campaigns (e.g.,
Doxiadis, Trihopoulos, & Phylactou, 19851. This absence of opposing information achieves what
Lazarsfeld and Merton 1197 1) call a condition of "monopolization. n As Flay (1966) has noted, the
chances of achieving a total ban on tobacco promotion in the U.S., coupled with an aggressive
anti-smoking campaign, are extremely remote.

39


but it is real. Mass communicatidn campaigns can keep, health-related problems
and policy options at the top of the public's.agenda and help bind community
resources into a cohesive force for change; inform citizens about their community's
attack on the problem and inspire their full participation; shift the meaning of
health-related behaviors and thereby facilitate a shift in social norms; and motivate
the adoption and maintenance of healthy lifestyle behaviors. The obstacles to
changing health-related behaviors and lifestyles through mass communications are
substantial but not insurmountable.

Public health advocates have a better understanding of what mass communication
campaigns can and cannot do as a result of several important studies conducted
during the past 20 years. Two successful campaigns, both focused on promoting
changes in individual behavior, were especially influential: the Stanford. Three
Community Study, focused on cardiovascular risk,reduction (Farquhar, Maccoby,
Wood, et al., 1977; Maccoby, Farquhar, Wood, & Alexander, 1977; Meyer, Nash,
McAlister, et al., 1980; Stern, Farquhar, Maccoby, & Russell, 1976); and the
North Coast "Quit for Life" smoking cessation campaign in Australia (Egger,
Fitzgerald, & Frape, 1983).

Failures were instructive too (e.g., Robertson, Kelley, O'Neill, et al., 1974; Vdry,
1974). A review of these campaigns made evident that the long period of
skepticism about the strategic use of mass communications was strongly
influenced by findings from short-term studies that were seriously flawed due to
poor planning, inappropriate messages, or deficiencies in research design.

Thus, studying both the successes and failures of past campaigns, public health
advocates have developed a more sophisticated understanding of how mass
communication campaigns can change health-related behaviors and lifestyles. The
remainder of this background paper reviews several important lessons that have
been learned.

LESSON 1: ESTABLISH A LONG-TERM COMMITMENT

The potential of the mass media for stimulating and reinforcing widespread
changes in behavior can typically be realized only over a long period of time (Flay &
Burton, 1990). Seduced by the apparent ease by which commercial marketers
influence consumer brand preferences, public health advocates have frequently
launched short-term advertising campaigns that have little chance of success
(Bandy & President, 1982; Maccoby, 1987). For example, one well-known study
evaluated an anti-drug television and radio campaign that lasted only 8 weeks
(Hanneman, Eisenstock, Hunt, 81 Weinbeck, 1977). Not surprisingly, the campaign
was found to have no effect. While this example is extreme, in general, past

40


efforts have often ignored the fact that attitude and behavior change in response
to mass communications is "usually characterized by a slow process of erosion and
accretion rather than by one of sudden ueheaval and conversion," (Roberts &
Maccoby, 1985, p. 547). Commercial marketers know this too: brand loyalty (or
"goodwill") in fact takes years to nurture and develop (Bovee & Arens, 1986).

The value of a long-term perspective is evident when we'consider the role of mass
media in the evolution of U.S. social norms regarding the acceptability of tobacco
smoking. Once viewed as a sexy, glamorous habit, smoking-today is seen as a
sign of poor self-discipline; to be a smoker now is to carry the weight of stigma
(Cooke, 1989; "All Fired Up," 1988). This evolutionary change, which began with
the Surgeon General's widely publicized report in 1964; has had a dramatic effect
on public health. While 43 percent of the U.S. adult population smoked in 1964,
under 30 percent did so in 1985; between 1964 and 1985, reduced tobacco
consumption resulted in the avoidance of an estimated 789,200 premature
smoking-related deaths (Warner, 1989). Through news reports, anti-smoking
advertising, and fewer portrayals of cigarette smoking in entertainment
programming (Signorielli, 1990), the mass media played a major role in stimulating,
amplifying, and sustaining this gradual, and eventually radical, shift in smoking
norms and behavior (DeJong & Winsten, 1990a).

LESSON 2: APPLY A BEHAVIOR CHANGE MODEL TO IDENTIFY INTERMEDIATE
OBJECTIVES

Very few mass commun.ication campaigns can be expected- to produce an immed-
iate change in behavior (McGuire, 1984, 1985; Roberts 81 Maccoby, 1985;
Skirrow, 1987). Whether a campaign can achieve that objective depends largely
on the specific problem being tackled -- its complexity; the level of public concern
.about it; at what stage in the behavior change process the target audience can be
found; whether early or late adopters are being targeted; and the personal,
interpersonal, institutional, and societal barriers to change (Atkin, 1981; Wallack,
1990a). Hence, rather than focusing on immediate behavior change, it is often
more realistic and appropriate to concentrate on achieving intermediate objectives
that set the stage for or otherwise contribute to behavior change in the long-term
(Farquhar, Maccoby, & Solomon, 1984; `Flora, Maibach, & Maccoby, 1989).

A useful framework for understanding these intermediate objectives is the
communication/behavior change model developed for the Stanford Three
Community Study (Maccoby & Alexander, 1980)3.  This model elaborates a series

   a  This framework was inspired by Cartwright's 119491 description of the three stages of
change that a campaign must achieve in order to influence behavior -- an increase in awareness
and knowledge (cognitive structure); a change in attitudes, leading to e heightened motivational

41


of steps in the behavior change process which,can be addressed through various
mass communications channels. Specifically, mass communication campaigns can
accomplish the following objectives: 1') increase awareness of a health problem
and establish it as a priority concern; 2) increase knowledge and change beliefs
that Impede the adoption of health-promoting attitudes; teach new behavioral
ski!!s; and 4) provide supports for sustaining behavior change.

Increase awareness'of a health orobiem and establish it as a orioritv concern.
Mass communications can be used to get the public thinking about a health issue,
a function commonly referred to as "setting the agenda" (Roberts & Maccoby,
1985). The objective at this stage is to present information that makes an issue
interesting, understandable, and personally meaningful, leading ultimately to self-
appraisal and a consideration of possible action (Bandy & President, 1982; Griffiths
& Knutson, 1960; McGuire, 1984, 1985; Roberts & Maccoby, 1985; Skirrow,
1987).

Increase knowledqe and chanae beliefs that imoede. the adootion of health-
promotina attitudes. Roberts and Maccoby (1985) argue that changes in
cognitions are a necessary precursor to eventual changes in attitudes and behavior:
1,
. . . any influence of mass media content depends on how people interpret mes-
sages relative to previously established conceptualizations of the world --
fundamentally a cognitive effect," (p. 547). Attitude and behavior change, they
assert, can eventually follow, making changes in knowledge and beliefs important
outcomes in and of themselves (Fishbein & Ajzen, 1975).

Demonstration of a campaign's impact on knowledge, beliefs, and attitudes is
often dismissed as unimportant because of the often-cited inconsistency between
attitudes and behavior (Bandy & President, 1982). In fact, attitudes are good
predictors of behavior when the attitude and behavior are measured at corres-
ponding levels of specificity (Ajzen & Fishbein, 1977). Thus, general attitudes
toward drugs will not necessarily predict whether a person will try a marijuana
cigarette at a particular time and place. To be predictive, the attitude
measurement should be equally specific. Attitude-behavior consistency is also
more likely when social norms support the behavior (Fishbein & Ajzen, 1975).

At the same time, it must also be remembered that attitude change is not a
necessary precursor to behavior change (Bern, 19701, in contrast to past
assumptions about the absolute primacy of attitudes in the behavior change

state (motivational structure); and engagement in the actual behavior lbehavioral structure/. The
key to inducing a given behavior, according to Cartwright, is having an appropriate cognitive and
motivational system "gain control of the person's behavior at a particular point in time, W lp. 2641.

42


process. Indeed, a persuasive communication may induce curiosity to engage in
new, low-risk behaviors on a trial basis, with .a change in,attitudes emerging later
in consequence (Flay & Burton, 1990; O'Keefe & Mendelsohn, 1984).

It is important to note here that when detailed, complicated, or politically
controversial information must be communicated, television and radio spots,
billboards, and print advertisements can stimulate further information-seeking by
promoting information hotlines (Pierce, Dwyer, Frape et al., 1986; Stein, 1986) or
the availability of pamphlets and other written materials (Metidelsohn, 1973;
Schlinger, 1976). It is critical that people not be merely exhorted to obtain
additional information but that specific strategies. be explained or modeled
(Solomon, 1983). This has been a central feature of several public health
campaigns, including national AIDS campaigns in the U.S. (DeJong 8; Winsten,
1991).

Teach new behavioral skills. Important behavioral.skills can be taught through
modeling or step-by-step instruction (Alcalay, ,1983; Bandura, 1977). Until
recently, behavior change was most often conceived in terms of altering existing
patterns of behavior; that- is, certain unwanted behaviors were to be suppressed,
and other behaviors, already in the behavioral repertoire were to be brought forth.
As a result, the power of the mass media to expand people's behavioral repertoire
was frequently overlooked (Alcalay, 1983).

The performance of newly acquired behaviors can be enhanced by demonstrating
how various barriers to behavior change can be overcome, thus increasing
perceptions of "self-efficacy" (Bandura, 1984). Self-efficacy is not a global
concept like self-esteem, but deals with a person's perceptions about his ability to'
act out a specific behavior at a particular time and place. Whether a person holds
such a belief is predictive of subsequent behavior change, whether it is the
suppression of existing behaviors or the acquisition of new ones (Strecher,
DeVellis, Becker, & Rosenstock, 1986). Vicarious experience is an important
source of information for efficacy expectations; thus, mass communications can be
employed to change self-efficacy by modeling determined effort that leads to
success. Performance of newly acquired behaviors can also be enhanced
suggesting so-called "cues to action" in the physical and social environment that
can stimulate a person to call up and apply a particular behavioral repertoire in the
appropriate circumstances (Maiman & Becker, 1974).

Provide suooorts for sustainina behavior chanaa. Learning and maintaining a new
pattern of behavior requires that people know how to monitor their behavior, apply
self-reinforcement strategies, and anticipate, eliminate, or cope with environmental
or social stimuli that trigger unwanted or competing behaviors. Mass
communications can be used to teach these self-management techniques (Bandura,
1977; Flay, DiTecco, & Schlegel, 1980).

43


Social support is also important for maintaining, new behavi,ors. Mass
communications can he!p here too by: 1) communicating the fact that others have
also adopted new behaviors.and are facing the same struggles in trying to maintain
them (Mogielnicki, Neslin, Dulac et al. 1986); 2).stimulating the social support of
opinion leaders, family, and peers (Green & McAlister; 1984; Rogers, 1983); and
3) reaching people how to elicit from others the support they need.

Application of the ccmmunicationlbehavior change model first. requires that
campaign planners establish where in the behavior change process the target
audience can presently be found. From there, the campaign can try to move the
audience sequentially through the remaining steps'. Consider the case of AIDS
prevention. Presently, most American adolescents and adults know a .great deal
about what is required to prevent AIDS, thanks in part to national public'awareness
campaigns. At this point, the successful promotion of condoms requires moving
beyond basic factual information about AIDS prevention to motivating messages
that address the various psychological barriers that impede condom use and that
present the personal and social benefits that their use can bring if approached in
the right way (Solomon & DeJong, 1986, 1989; DeJong & Winsten, 1991).

With this model in mind, campaign planners should develop a strategic plan that
divides the campaign into distinct phases,.each with realistic, specific, and
measurable objectives (DeJong & Winsten, 1990a; Green & McAlister, 1984;
Maccoby & Alexander, 1980). Once the planning phase is over and measurable
objectives are set, campaign organizers will have a framework that can be used to
guide media selection, message development, and campaign evaluation (Maccoby
& Solomon, 1981; Solomon, 1982).

While this point seems obvious, reviewers of mass communication campaigns have
f,requently noted that campaigns often have unrealistic goals, because the
objectives are vague or defy valid and reliable measurement, because the use of
mass media to effect the desired change is unfeasible, or because insufficient time
and resources have been committed to the campaign (Bandy & President, 1982;
McGuire, 1984; Mendelsohn, 1973; Schlinger, 1976; Solomon, 1982; Wallack,
1980, 1981).

   * It should be remembered, however, that people do not always go through this sequence of
steps in ex8ct order, especially if the choices among behaviora/ alternatives are unimportant to
them, or if they have somehow been induced to perform the behavior in the absence of prior
aititude Ch8nQe (MeGhe, 1989; Solomon, 1989).

44


JFSSON 3: APPLY THE "CONSUMFR" ORIENTATION OF SOCIAL MARKETING

By the late 197Os, several reviewers of mass communication campaigns had noted
that the public health community knew too little about modern marketing (e.g.,
Schlinger, 1976). In recent years, however, Federal health officials and other
public health advocates have become increasingly sophisticated in designing and
executing campaigns, primarily as a result of the "consumer" orientation that
characterizes Madison Avenue's approach to marketing. This section describes the
central tenets of this so-called "social marketing" approach5.

All campaian messaaes should be directed to a well-defined taraet audience. In
the argot of marketing, a target audience should be "segmented" into subgroups
with similar geographic, demographic, psychological, and problem-relevant
characteristics (Flay & Burton, 1990; Maccoby 81 Alexander, 1980; Solomon,
1983). With this information, campaign planners can develop strategies that are
appropriate for each segment (Simon, 1974). The target audience can be
members of the general public or business and government leaders.

Commercial marketers rely on a variety of market segmentation techniques. At a
minimum, markets are typically divided according to geographic location (e.g.,
urban, suburban, or rural residence) and consumers' demographic characteristics
(e.g+ gender, age, race/ethnicity, education, occupation, income, religion). More
recently, so-called "geo-demographic" techniques have been developed whereby an
individual is classified into one of 40 lifestyle categories defined by the social class
and consumer spending patterns of that person's postal "zip code" area
(Townsend, 1985).

"Psychographics" classifies consumers on the basis of their psychological make-up
and lifestyle. As defined by Mitchell (1983), psychographics describes "the entire
constellation of a person's attitudes, beliefs, opinions, hopes, fears, prejudices,
needs, desires and aspirations that, taken together, govern how one behaves," (p.
vii). The most popularly used system for adults is the Values and Lifestyles (VALS)
typology developed in 1978 by SRI International (Mitchell, 1983). A new version
of this typology, designed to correct deficiencies in the original system, was
released in the mid-1980s.

For.any mass media campaign designed to change health behavior, it is important
to have a "psychographic" system for segmenting the audience. Typically,

   '  Social marketing is defined by Kotler and Zattman (197 1) as "the design, implementation,
and control of programs calculated to influence the acceptability of social ideas and involving
considerations of product planning, pricing, communications, distribution, 8nd marketing research, -
/p. 3). In short, social marketing is the application of commercial marketing and distribution
strategies to the promotion of social goals (Kotler, 1984; Solomon, 19891.

45


however, commercially available systems, with their focus on consumer spending,
will be inadequate to the task. Thus, campaign planners often "customize" their
own typology based on problem-specific research, beginning with focus group or
one-on-one interviews and mov'ing,on to formal survey research (e.g., Lastovicka,
Murry, Joachimsthaler et al., 1987; Slater & Flora, i 991).

U.S. "market segments*' that deserve special consideration are non-English
speakers. Too often, English-language campaign materials are translated for
minority group audiences, with cultural nuances ignored (Farquhai, Fortmann,
Maccoby et al., 1985a; .McAlister, Ramirez, Amezcua et al., 1987). There are
distinct subcultures within these groups, each with its own history, customs,
dialect, and patterns of health-related behavior. Because it will often be
impractical to develop materials for each subgroup, care must be taken to' create
materials that transcend these differences and "ring true" to the largest number of
persons possible.

*
                                        rich
ynderstandina of the taraet audience (Atkin & Freimuth, 1989; OCC, 1989).
Focus groups are the qualitative method most frequently used by advertising
researchers (Basch, 1987; Folch-Lyon & Trost, 1981). With this technique, a
small group of eight to 12 individuals is interviewed in depth by a trained
moderator.. The moderator, following a previously developed agenda, creates a
non-threatening, accepting atmosphere to draw out each participant and strives to
facilitate discussion among the participants.  Success is highly dependent on the
skills of the moderator. Sessions are usually conducted at a facility that permits
observers to watch from behind a one-way niirror.

The focus group technique is often viewed skeptically. The research usually
involves a relatively small number of respondents. They are recruited to meet
certain selection criteria and do not know one another, but they are not selected at
random, so there is no guarantee that they are truly representative of the
population as a whole. Moreover, the technique can be inappropriate for gleaning
information about highly charged or embarrassing topics.

Some marketing researchers claim that the technique is largely ineffective with
adolescents because of their heightened self-consciousness and sensitivity to peer
pressure.. Other researchers disagree, noting that a moderator with sufficient skill
can work successfully with adolescents (Greenbaum, 1988). A type of focus
group that seems especially effective with teens is the so-called phenomenotogical
focus group; the respondents do not respond to direct questions, but are given an
appropriate task to accomplish as a group without the moderator's help (Basch,

46


1987). With elementary school children, be,cause of their more limited
communication skills and attention spans, role-playing, fantasy play, drawing, and
other experiential techniques are usually necessary to elicit useful information
(Greenbaum, 1988).

!n favor of focus group research, it can provide large amounts of rich, detailed
information in a short period of time and at relatively little.cost. Especially
important is information on the target aud-ience's speech patterns, body language,
and style of dress. These observations can provide valuable clues as to how a
product, service, or idea can be "positioned" ahd marketed.

An alternative technique is a series of private, one-on-one interviews conducted by
a trained moderator or clinical psychologist. The interviewer follows a prepared
protocol, but detailed follow-up questions may also be asked. There are several
advantages of this technique. Issues can be probed in greater depth. Respondents
are typically more willing to share highly personal information, and group dynamics
do not bias the subjects' responses. Special facilities are not needed. On the
other hand, this method is more expensive and time-consuming than focus group
interviews. Moreover, clients or other members of the project team do not observe
the interviews so that respondents will speak more freely.

The use of clinical psychologists for these interviews is intriguing. Recognizing
that people's self-reports concerning the reasons for their behavior are frequently
inaccurate (Nisbett & Ross, 1980), those who employ this method note that
clinical psychologists have a range of projective techniques at their disposal to
assess the psychological or emotional benefits that a product offers,. benefits
which are often not consciously'acknowledged. Moreover, psychological methods
or theories can be readily applied to explaining consumer behavior and generating
advertising ideas. For example, products might be seen as answering basic ego
needs, such as a need for self-esteem or dependency needs?

   * Another useful framework for generating campaign ideas is provided by McGuire 119891. By
his scheme, general theories of human motivation are organized into four broad categories.
corinitive stabilitv theories: According to this set of theories, human behavior is motivated by a
need to maintain beliefs and attitudes that are consistent. A strategy suggested here is to focus on
the inconsistency between the target audience's values and their behavior.  Coanitive Drowth
theories: By these theories, human behavior is motivated by certain needs that are cognitive,
rather than affective, such as a need for stimulation, or a need to believe in one's capacity to
maintain control over the environment. Affective stabilitv theories: By these theories, human
behavior is motivated by a need to maintain a stability of affect. Fear appeals, for example, seek to
induce a tension or stress that the target audience would then be motivated to eliminate. Affective
growth theor&: These theories, also emphasizing growth, deal with the realm of emotions, such
as the need for love and acceptance.

47


Qua!itative research is especially valued for the new insights it can generate (Bovee
& Arens, 1986). Marketing researchers typically propose that this research be
followed with surveys and other quantitative methods to test the hypotheses
genera,ted, but commercial clients often skip this step because of time or financial
constrraints or because they find the insights provided through the qualitative
research to be especially compelling or at least consrstent with their past
experience (Szybillo & Berger, 1979). -Public health advocates are likely to do the
same, but whenever resources and time permit, findings from qualitative research
should be validated through surveys or other more rigorous methods (e.g.,
Lastovicka, et al., 1987).

Once the develooment of camoaian materials is underwav. extensive oretesting
must be conducted to ensure that thev are aoorooriate for and aooeal to the taraet
grouo (Atkin & Freimuth, 1989; OCC, 1989). Many design options are available to
campaign designers, and each has its strengths and weaknesses, as evidenced by
both the findings of social psychological research and the successes and failures of
past campaigns. Because the research on persuasion has revealed so many
complex interactions among source, message, and channel variables, and because
the results depend in part on the audience and the specific issue at hand, making a
reasoned decision about which option to select is extremely difficult (McGuire,
1985, 1 989)7.

As a result, it is common to find disagreement among the experts about how
campaign messages should be designed. For example, consider the "style" of the
campaign. Atkin (1979) notes that public communication campaigns are often dry
recitations of factual information, with little attention to style or production values,
and he urges that campaigns designers build in "excitement, drama, and humor" to
buttress entertainment value. In contrast, Bauman et al. (1988) deliberately
avoided a "flamboyant" style of advertising in their anti-smoking spots, based on a
consultant's critique of previous anti-smoking messages as "self-conscious

  McGuire 11989) presents a "communication-persuasion matrix w as a framework for reviewing
the possible effects of various message design and implementation options. The matrix emerges
from a cross-tabulation of "input variables" and "output factors. W Input variables include source
variables, such as communicator credibility and attractiveness; message variables, such as type of
appeal (e.g., celebrity `endorsement, humor, fear) or presentation of alternative viewpoints; channel

(medium) variables, including the number and type of media used; receiver variables, including
demographic and psychographic characteristics; and target variables, or specific features of the
problem behavior itself. Output factors are the sequence of processes that mediate the impact of a
persuasive communication on behavior, which A tkin and Freimuth (19891 have categorized in five
stagesi exposure, information-processing, cognitive learning, yielding, and utilization.

48


imitations" of commercials. They also. noted that, while such advertisements
might increase attention and even earn public accolades,, they might fail in their
mission if the audience is .distracted from attending to or remembering the message
(Benn, 1978)*.

As noted, these considerations are also confounded by-the nature of the audience
and the specific issue involved. For example, a "two-sided" approach, which
acknowledges ideas or arguments in opposition to the advocated position, but then
refutes them, is superior -- but only whenmembers of the audience are highly
sophisticated and well-educated, when they are initially opposed to the advocated
position, and when they will later be exposed to information that supports that
opposing perspective (Atkin, 1979).          

Even when there is general agreement about which approach is best, it must be
remembered that no "rule" of advertising works all the time and that widely
successful strategies can be rendered ineffective .through overuse. Cinematic
techniques, formats, and styles that command attention and-have strong audience
appeal today can eventually become part of the background clutter that is ignored
tomorrow. Audience values change over time, too. For example, appeals
developed in the 1980s that drew on baby-boomers' need for self-fulfillment may
not work in the 1990s as that generation moves on to other concerns, such as the
need to build warm and nurturing relationships (Flay & Burton, 1990).

Past campaigns and research findings should be used, therefore, not as a blueprint,
but as.a source of ideas that need to be pretested within the context of a new
campaign (Solomon, 1983). For this reason, with each step of campaign
development, planners should conduct formative research involving representatives
of the target group to double-check the appropriateness and potential effectiveness
of campaign materials (Maccoby & Alexander, 1980). Unfortunately, careful
formative research of this type is often not done (Palmer, 1981).

A formative research plan should also include television and radio managers and
print editors -- the `*gatekeepers" who control access to the media. These
individuals will have their own ideas about what is appropriate and effective
(Hammond, Freimuth, & Morrison, 1987). They also have responsibility for making
sure that all advertising, including public service announcements, meet their
station's standards of propriety and will not alienate important segments of their

   ' A further cokplication: Research suggests that if the distraction from a persuasive message
is only enough to prevent silent rehearsal of counter-arguments to the message but not enough to
interfere with message reception, such advertisements might actually be m effective (Festinger
& Maccoby, 19641.

49


audience (DeJong & Winsten,. 1991; Flay &,Burton, 1990). Therefore,. they `should
be involved early on in planning and be.given the opportunity to react to materials
during each phase of the development process (Flay, 1986).

The principle method used in formative research at this stage is focus group
interviews. One use of this research technique, to learn basic information about
the target audience;was described earlier. This technique is also used to evaluate
message concepts (that is, brief summaries of key benefits or "promises"),
preliminary media executions, and finished products. Issues that can be explored
through such research include the material's ability to command attention;
audience comprehension and recall; aesthetic appeal; and the message's credibility,
relevance, and acceptance by the target group.

How frequently campaign planners conduct this type of formative research
obviously depends on the resources they have at their disposal. At a minimum,
focus groups should be conducted to test preliminary executions, such as scripts,
storyboards, and mock-ups of print advertisements. Tests of finished products are
generally less criticalg. Often, tests of preliminary message concepts can be
incorporated into initial focus group research being conducted to learn about the
target a.udience.

Mass communication messaaes should address the taraet audience's existinq
knowledae and beliefs. In order for a persuasive communication to succeed, it
must anticipate the audience's points of resistance and then .address them
(Lefebvre, Harden, & Zompa, 1988). In the Health Belief Model (HBM) (Maiman &
Becker, 1974; Janz & Becker, 1984),,those resistance points are defined in terms
of the target audience's underlying beliefs about a particular health problem and its
prevention or cure.

These beliefs concern the following: the person's perceived susceptibility to the
disease or health problem; the seriousness of the disease or problem if it is
encountered, including health, social, and financial consequences; the
effectiveness of the prescribed course of action in reducing the threat to health;
and the barriers to executing that behavior, such as financial cost, inconvenience,
pain, and lost time (Bloom & Novelli, 1981; Solomon, 1989). Also important is the
person's perceptions of popular opinion and normative perceptions for the roles

   ' In some cases,. however, this type of testing is essential. One example illustrates this point:
the California Prevention Demonstration Program, a mass communication campaign aimed at
reducing problems related to alcohol abuse. For an interim evaluation, those survey respondents
who had seen each television commercial being aired were asked to say what they remembered
about it and its message. Across the commercials, between 35% and 44% of the respondents
misinterpreted them to be pro-drinking rather than pro-modeiation messages /WaJJack & Barrows,
1982-831.

50


and behaviors that are appropriate to members of the society (Fishbein & Ajzen,
1975). Messages emphasizing that others have adopted a desired behavior can be
especially persuasive (Farquhar, 1984).

The HBM framework is useful for organizing formative research and then guiding
message content (Solomon & DeJong, 1986). For example, in designing messages
for an anti-smoking campaign, Bauman et al. (1988) discovered that adolescents'
expectations of certain positive and negative consequences to smoking was a good
predictor of their later smoking initiation. -They then designed their campaign to
address these beliefs. Messages focused on short-term consequences of smoking,
such as bad breath and loss of concentration and appetite; possible loss of friends;
possible trouble with adults; and the supposed `fun" and "relaxation" of smoking.

Mass communication camoaions should communicate incentives or benefits for
gdootina the desired behavior that build on the existing motives, needs, and values
gf the target arouo (El-Ansary & Kramer, 1973; Lefebvre & Flora, 1988), a process
that Lazarsfeld and Merton (1971) have called "canalization." The failure to do
this is at the heart of many campaign disappointments.

Commercial marketers have long understood that people are more likely to attend
to and remember messages that meet their needs or support values they believe in
(Flay, 1986; Rehony et al., 1984). Accordingly, product advertising often plays on
peoljle's insecurities, desires, and aspirations, and then "positions" the advertised
product or service as a means of meeting those needs immediately (Solomon,
1989). The key, therefore, is to establish the benefits of the product or service
(Lefebvre & Flora, 1988; Ogilvy, 1985).

The experience of commercial advertisers makes clear that, in many cases, a
health promotion campaign should emphasize benefits that are not related to health
per se, but to universal and more salient human desires for beauty, acceptance,
love, security, status, or wealth (Bonaguro & Miaoulis, 1983; McGuire, 1984;
Roberto, 1972; Schlinger, 1976). In the past, health advocates focused too
narrowly on trying to motivate people to change their behavior for the sake of their
health rather than in response to -other motives, a strategy that proved to be
limiting and self-defeating. Instead, as explained by Cartwright (1949), people
must be encouraged to "see the actionas a path to an existing goal," (p. 261 I.

Commercial advertisers often play on young people's insecurity about their place in
the world and their growing desire for. autonomy. Health campaigns can do the
same. To take one example, a campaign to discourage alcohol, tobacco, and other
drug use can: provide accurate information on the actual level of substance use
among preteens and adolescents, thereby showing that far from "everyone" uses
these substances; urge young people to encourage one another to refrain from
experimenting with and using these substances (Bauman et al., 1988); present

51


peer role models -- older adolescents who are independent, mature, and popular
without drinking, smoking, or using other drugs (McAlister, Perry, & Maccoby,
1979); and illustrate peer approval for refusing or stopping substance use (Liepold,
1986; Worden, Flynn, Geller et al., 1988). Moreover, such campaigns can
encourage young people to select a peer group or clique'that. does not use these
substances and helps bring out their best qualities (McLeroy, Bibeau, Steckler,
Glanz, 1988). A good, example is the 1Be Smart. Don't Start!" campaign
sponsored in the mid-1980s by the National Institute on Alcohol -Abuse and
Alcoholism (Atkin, 1989a).

Because of the importance of social influences in substance use, campaigns aimed
at preteens and adolescents should also focus on the important role of social
pressure, both direct and indirect, from peers, family, and the media; ways in
which tobacco and beer advertisers try to persuade people to use their products
(Atkin & Arkin, 1990; Flay & Sobel, 1983); specific counterarguments to refute
arguments made by others in favor of substance use (McGuire, 1985); and
alternative strategies for refusing various offers of alcohol, tobacco, and drugs
from peers or family members (Polich, Ellickson, Rueter, & Kahan, 1984; DeJong,
1987). The underlying message is that refusing to give into pressure to
experiment with and use alcohol, tobacco, and other drugs is a true demonstration
of independence and freedom.

Commercial advertising experience also makes clear that, whenever possible, the
target audience's attention should be drawn to the immediate consequences of
behavior that have a high probability of occurring. This is especially true for
campaigns directed to preteens and adotescents.

Again consider the case of preventing alcohol, tobacco, and other drug use by
youth. Young people need to be taught the facts about the long-term impact that
substance use might have on their health and well-being. This is most important
when there is a cloud of mythology and misinformation about the addictive
potential and long-term effects of a particular drug, as was the case for cocaine
before the National Institute on Drug Abuse (NIDA) began its public awareness
campaign, "Cocaine: The Big Lie" (Johnston, O'Malley, & Bachman, 1988). But

while an awareness of long-term risks will dissuade many young people from sub-
stance use, the deterrent effect will be far from universal. By age 12, for example,
children have been told repeatedly that tobacco use is dangerous, but a large
number still begin to smoke anyway (Evans, Rozelle, Maxwell et al., 1981).

It is important to understand why information about the long-term sequelae of
substance use have limited effect. First, even when the credibility of factual
information is accepted, people might question whether it really applies to them
(Atkin, 1979). Most young people take good health for granted, and many view
the dire, long-term consequences of substance use as too distant and too unlikely

52


to be of concern to them. Second, their own observations may lead young people
to conclude that experimentation does not necessarily result in addiction, and that
regular use does not necessarily result in severe health consequences. Because
many people do not understand the probabilistic nature of risk, this uncertainty is
an opening for denial (DeJong, 1987). Third, for most young people, substance
use is occasional, not daily, and typically occurs in social situations. As a result,
they might overestimate their own capacity to control the extent of their substance
use, believing that they are fundamentally different from those who develop a drug
dependency. In fact, in some cases this,belief might even stimulate curiosity about
a substance and lead to experimentation (Polich et al., 1984).

In trying to dissuade young people from smoking cigarettes, for example, an
emphasis on long-term risks of heart disease and cancer will have little apparent
effect in delaying experimentation or reducing use. Instead, the emphasis should
be placed on immediate consequences that have. a high probability of occurrence
(Flay & Sobel, 1983; Job, 1988). With greater impact, prevention programs now
emphasize readily noticeable effects such as discoloration of the teeth, body and
mouth odor, loss of concentration and appetite,. and the deterioration of physical
performance (Bauman et al., 1988; Evans et al., 1981). This strategy is also
reflected in a recent public service campaign, "Nit, A Teen," by the federal Office
on Smoking and Health, which portrays smoking as being unattractive to desirable
members of the opposite sex.

Health camoaians should exolore the use of "imaae" or "lifestvle" advertisina to
promote an active, healthv lifestvle. Commercial advertising of this sort allows
consumers to envision the transformation of a less desirable past to a more
desirable future by manipulating images of the consumer as a person with
intelligence, power, status, and popularity (Chapman & Egger, 1980; Graham &
Hamdan, 1987). In essence, image advertising associates product consumption
with the "good life," as defined by the target audience. It rarely seeks to elicit an
immediate behavioral response, but instead tries to evoke an emotional response
that can catalyze later changes in behavior (Schwartz, 1983). As a result, such
advertising needs to be repeated more frequently than advertising that uses a more
direct sales pitch (Benn, 1978).

Image advertising is commonly used to promote cigarettes, especially in women's
and youth-oriented publications (Altman, Slater, Albright, & Maccoby, 1987).
Advertising for Virginia Slims cigarettes is illustrative. The launch of this brand
coincided with the woman's movement, and the advertising copy has always
stressed women's emancipation and growing freedom as an appeal to "liberated"
women (Benn, 1978; Rehony et al., 1984). At the same time, the ads have a
distinctly feminine aura, suggesting that Virginia Slims smokers can compete with
men without sacrificing their femininity. This juxtaposition is apparent in the
campaign slogan "You've Come a Long Way, Baby."

53


Another example is provided by malt liquor advertising directed to low-income
black male consumers. A great deal of such.advertising emphasizes the extra
"power" of the drink, which does have a higher alcohol content than beer, and ties
its use to promises of sexual power and conquest (Postman, Nystrom, Strate, &
Weirrgartner, 1987). In contrast, ads for cognac and'other liquors, which are
designed to appeal to upwardly mobile and economically successful blacks, portray
the product as a sign.of elegance (Hacker et al., 1987).

Other image advertising associates a product with stories, vignettes, themes, or
characters that tap into cultural myths. In so doing,- these ads evoke tha culture's
ideals and give expression to profound and universal emotions (Schwartz, 1983;
Chapman, 1986). Most important, by evoking particular myths, these ads
communicate the essence of those `people who use the product and their place in
the world (Chapman & Egger, 1980). As a result, consumers see aspects of their
real or desired image portrayed in the advertising, and the product becomes a
vehicle for expressing or gaining that identity. The quintessential example of this
type of advertising is the campaign for Marlboro cigarettes, which exploits the
American myth of the "frontier," a free, open space where a resourceful and self-
sufficient man can start fresh and make his way in the world. The "Marlboro Man"
is a man of inner-strength -- self-confident, tough, straightforward, and
independent; he is portrayed, essentially, as the embodiment of American
individualism and potency.

Chapman and Egger (1980) assert that anti-smoking appeals directed at preteens
and adolescents also need to use "image" advertising. One strategy they suggest
is to present a mythical character with whom this group can identify, a character
who demonstrates his power and independence by choosing not to smoke. A
similar strategy was applied in a drunk-driving prevention campaign just pilot-tested
in California, "The Driver,*' which was designed to promote the designated driver
concept (SYSTAN, 1987). "The Driver" is portrayed in television spots as a classic
American hero, the handsome loner who thinks and acts apart from others, but is
also willing to take charge when others must be rescued from themselves.

Image advertising can be used more broadly to promote a health-enhancing
lifestyle, one that is incompatible with substance use and other behaviors that put
health at risk. For example, the Alberta Alcohol and Drug Abuse Commission
(AADAC) in Canada has operated its "Make the Most of You" campaign since
1981 with a focus on encouraging and assisting teens to adopt a healthy lifestyle.
Through a combination of print and electronic media and school- and community-
based programs, the campaign shows that adolescents, with peer support, must
take an active role `in their own growth and development by involving themselves
in fun yet healthful activities, In this context, substance use and other high-risk
behaviors are portrayed as impediments to teens' achieving their own goals and

54


aspirations. An evaluation incorporating a quasi-experimental research design, with
Manitoba used as a comparison area, has produced encouraging results
(Thompson, 1988).

A variation of this general strategy is to label mem.bers of the target audience as
"winners" and to present the desired behavior as an integral part of that image
(e.g., Wallack & Barrows, 1982-1983). Labels provided by others can influence a
person's subsequent behavior (DeJong, l979), though their impact is far greater
when they are based ,on observations of past behavior (Kraut, 1973)`or are
otherwise personalized (e.g., Strenta & DeJong, 1981), conditions that cannot be
met easily, if at all, through mass communication channels (DeJong; 1988). Still,
this approach might be valuable in certain cases. Alternatively, Schwartz (1983)
suggests that mass communication campaigns can use "shame" to motivate
desired behaviors, essentially by confronting members of the target audience with
any discrepancy between their self-image and their actual behavior (see also, Ball-
Rokeach, Rokeach, 81 Grube, 1984).

Fear aooeals should be used onlv under limited circumstances. A continuing
controversy in the U.S. -concerns the use of fear appeals. Most experts have
concluded that fear campaigns are extremely difficult to execute and rarely
succeed (Atkin, 1981; Bandy 81 President, 1982; Boster & Mongeau, 1984; Job,
1988). Indeed, they argue that there is a real risk that fear appeals will backfire,
making the problem behavior even more resistant to change (Kleinot & Rogers,
1982; Rogers & Mewborn, 1976).

To work, the onset of fear should precede an explication of the simple, concrete
steps that people can take, and .fear onset should then reinforce the desired
behavior to confirm its effectiveness. This is harder to do than it sounds. If the
appeal is too mild, or if the threatened punishment seems too unlikely or remote in
time, people will not be motivated by it. If the threat is too strong, or if the
behavioral prescription being offered as an alternative is inadequate to alleviate the
induced fear, people might tune out the message, deny its validity, derogate the
source's credibility, or adopt a fatalistic attitude (Job, 1988; Solomon & DeJong,
1986).

The central difficulty is the impossibility of anticipating or modulating in advance
the level of fear that will be generated by a particular set of campaign materials or
to judge whether the fear reduction or other benefits resulting from the prescribed
action will be adequate to motivate behavior change (Bandura, 1986). Moreover,
the target audience's response to the fear appeal will also vary according their
perceptions of their own vulnerability. If the audience has low anxiety, a fear
appeal might serve to raise concern about the problem and motivate action. But if
the audience is already anxious about the problem, this type of appeal might
interfere with comprehension or a rational consideration of options (Bandy &

55


President, 1982). A complicating factor is that members of the same target
audience will vary on this dimension, again making the appropriate strength of the
fear message difficult to establish.

Despite these considerations, fear appeals continue to have strong intuitive appeal
and r?re frequently used by advertising professionals in health promotion
campaigns. One reason for this is that focus group participants usually rate strong
fear appeals as highly motivating and effective. But this is true even when
subsequent experimental studies show those appeals to be ineffective (Job, 1988).
The reason for their continuing allure is clear: In general, the threat of punishment
is re!ied upon to control behavior when its causes are insufficiently understood or
those causes are difficult to change (Bandura, 1986).

Compounding the confusion is the lack of definitional clarity about what
constitutes a "fear appeal." In their zeal to promote alternative approaches, some
experts extend their concerns about fear appeals to any message that focuses on
the negative consequences of certain behaviors. Further adding to the confusion,
of course, is that such campaigns do occasionally work (e.g., Advertising Council,
1991; Chu, 1966). As noted before, however, this is usually the case when the
audience has low awareness or anxiety about a problem (Flay & Sobel, 1983). In
1987, for example, an annual survey of high school seniors found a decline in
reported `cocaine use; the investigators attributed this decline to a heightened
awareness of cocaine's potential to kill even first-time users, due to the widely
publicized death of basketball star Len Bias and the mass media campaigns that
followed (Johnston et al., 1988)". On the .other hand, once people are already
aware of a problem, other means of influencing their behavior, such as modeling
appropriate skills and demonstrating the benefits of alternative behaviors; must be
found.

Cuse
A celebrity
is often used in product advertising as a means of drawing attention to the product
or to show that the it is "in fashion" (Graham & Hamdan, 1987). Many public
service campaigns have used this tactic as well. A celebrity's involvement will
typically include public service announcements and other educational materials,

lo

   It should be noted that when school-based programs were started in the 196Os, educators
believed that the key to effective prevention was to warn young people about the dangers of
substance abuse. It is `now recognized that programs which only emphasize consequences are of
limited value. First, investigators found evidence that, among some youth, such programs might
stimulate curiosity about drugs and a rise in experimentation (Bandy & President, 1982; Polich et
al., 19841. Second, such programs often resorted to exaggerated "scare tactics, n which
adolescents detected and discounted.

56


publicity events, promotional tours, and fund-raisers. If the spokesperson's
association with the message becomes strong enough, his or her presence alone
can evoke recall of the message (B&n, 1978).

Even so, there are risks to using this strategy. First, the message may be
overwhelmed by the celebrity's presence and ultimately forgotten (Atkin, 1979;
Ogilvy, 1985) Second, celebrities can lose their lustre; among adolescent fans in
particular, perceptions of entertainment and sports stars often change very quickly
(Graham & Hamdan, 1987). Third, celebrities.can suddenly become newsworthy
in ways that directly undermine the campaign or are otherwise inappropriate".

In selecting a celebrity spokesman, the watchword is caution. A celebrity should
be selected whose public image fits the underlying strategy of the campaign, not
just because he or she is available (Bandy & Pres.ident, 1982). Available data on
the celebrity's popularity among different demographic groups should be examined,
and formative research should be undertaken to test the target audience's
perceptions of the celebrity's trustworthiness'2,-credibility'3, and attractiveness
(McGuire, 1985). Most important, people who know the celebrity, and whose
judgment can be trusted, should be consulted for their advice whenever possible.

Camoaian olanners should seek oooortunities.to oromote a product or service
whdse use is consistent with the camoaian's health theme (Rehony et al., 1984).
Perhaps the classic example of this approach is the promotion of condoms as part
of family planning or AIDS prevention programs (Altman & Piotrow, 1984; DeJong,
1989; Sherris, Lewison, & Fox, 1982); The central benefit of this approach is that
it allows the direct application of commercial marketing and advertising strategies
(Black & Harvey, 1976).         '

Campaign planners can often develop a new product or service that can be
promoted as part of their program (Lefebvre & Flora, 1988). A good example of

   I1 In the case of substance abuse-prevention messages, there is also a fourth consideration:
Adolescents often view celebrity messages skeptically, because they suspect the celebrity was
paid to deliver the message or because they believe that many stars are substance users (Harvard
Business School, 1987).

   I2 Perceptions of trustworthiness will be undermined if the source of the message is seen as
lacking good will or having manipulative intent. As a result, young people, especially those who
are rebellious aQainst adult authority, may view any adult spokesperson with suspicion (Eauman et
al., 19881.

   " Because of the documented importance of credibility, it is tempting to rely on scientific
experts to provide health promotion messages. In some cases this will backfire. Schlegel (19771
cautions, for example, that adolescents who see themselves as relatively sophisticated about drugs
may view all others, including scientific "experts, n as less credible than their friends (see Smart &
Fejer, 19 721.

57


this strategy is provided by the Pawtucket Heart Health Program, which is focused
on cardiovascular risk reduction (Lasater, L8febVr8, & Carleton, 1988; Lefebvre,
Peterson, McGraw et al., 1986). Commodities publicized through the mass media
include a cookbook and a "Four Heart" restaurant program through which eateries
offer low-fat, low-salt menu options. Another possibility is to promote coupon
books that offer free or discounted products and services whose use is consistent
with the public health campaign (Bollier, 1989). It should also be recalled that
community-based intervention programs (e.g.., self-help groups, screening/
counseling events, smoking cessation programs) can also be promoted (Lefebvre et
al., 1988).

A related tactic is contest sponsorship (Graham & Hamdan, 1987). For example,
as part of their radio-based anti-smoking campaign, Bauman et al. (1988) included
a special promotion, the "I Won't Smoke" Sweepstakes, as a means of
encouraging peer involvement and interpersonal communication about the
campaign. Entrants sent in an entry form with their name and address; at their
option, they could sign a pledge not to smoke. Entrants could enroll friends in the
drawing in return for cash awards. During the drawing itself, the prize doubled in
value to $2,000 if the winner's entry form indicated that he or she was a non-
smoker.

Another possibility is for a health promotion campaign to establish links with
commercially available products or services. In this strategy, called "cause-related"
marketing, advertising for the product or service also carries a public health
message (Moses, 1988). While it is ideal'for there to be a direct link between the
commodity and the health message (e.g., life insurance with drunk-driving
prevention, physical fitness equipment with smoking prevention), such a
connection is not strictly necessary. For example, the Frito-Lay Corporation, one
of the country's largest makers of potato chips and other snack foods, agreed to
donate money to the non-profit Just Say-No Foundation with 8aCh customer
purchase, a promotion announced in advertising and on its packaging with a brief
anti-drug message.

Public health advocates can also emulate a strategy used by tobacco and b88r
companies -- the official sponsorship of sporting events, concerts, and other
cultural or youth-oriented activities. For example, Canada's "Break Fr88" campaign
became the official sponsor for the Arctic Winter Games and the Student Regional
Games and distributed "Break Free" toques and headbands as part of those events
(Liepold, 1986). Because such events are often financially dependent on the fees
paid by their sponsors, use of this strategy by public health advocates will be
limited unless they can negotiate with a product or services company to co-
sponsor the event.

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LESSON 4: STIMULATE INTERPERSONAL COMMUNICATION

Stimulating interpersonal channels. of communication can enhance a mass
communication campaign in several ways (Flay & Burton, 1990; Rogers, 1983).
First, communication through a social network ensures that the message is spread
beyond the original audience. If discussion of a topic is frequent, then any new
information provided through the mass media is more likely to be attended to and
remembered. Second, interpersonal communication is generally very effective for
delivering complex information and persuasive messages. Third, interpersonal
communication can increase the likelihood of new behaviors being tried, adopted,
and maintained (Flay, 1986).

In using a mass communication campaign to stimulate this process, `it is important
to target messages to a community's opinion leaders or "trend-setters" (Black &
Farley, 1977; Rogers & Shoemaker, 1971). Katz and Lazarsfeld (1955) describe
this as a two-step flow of communication, from the sources of mass com-
munications to informal opinion leaders, and then from these leaders to others.

The importance of this approach is underscored by studies on the impact of mass
media on youth at high-risk for drug abuse. In their review of the literature, Bandy
and President (1982) noted that the more often students use drugs, the less likely
th8y.are to believe information conveyed through the mass media. One study they
reviewed found that non-users rely primarily on the mass media to learn about
drugs, whereas drug users rely primarily on information from their friends and their
own experience.

LESSON 5: USE A VARIETY OF MASS COMMUNICATION CHANNELS

A variety of communication channels should be used to provide a clear and
consistent message, thereby reinforcing one another (Atkin & Arkin, 1990;
DeJong, 1989). Particular channels should be selected according to the target
audience's media preferences and the objectives of the campaign (Alcalay &
Taplin, 1989).

Television is an attractive medium because of its large and diverse audience, which
creates the capacity for bringing immediate attention to an important issue or
concern. On the other hand, television programming is passively consumed, which
limits the type of information that can be conveyed (Atkin, 1979). In general,
television is excellent for providing short, uncomplicated messages, evoking
emotional reactions, establishing evidence of new social norms, and modeling
behaviors that can be easily taught.

59


Because each television show's audience varies in its demographic profile,
narrowly defined audiences can be targeted., Current trends toward the
"fractionalization" of television, caused primarily by stronger independent stations,
cable channels, and syndication of first-run shows, also provide opportunities for
targeting specific audiences such as young people (Atkin &. Arkin, 1990; Graham &
Harridan, 1987). On the other hand, use of these media greatly increases the
logistical demands on campaign pIann-ers.

The potential of radio, especially for reaching adolescent audiences, has not been
fully appreciated by public health campaign organizers. Radio shares many of
television's advantages, but obviously does not carry the impact of the Visual
medium. On the other hand, radio calls upon the imagination more than television,
which may be an advantage for certain types of messages. Radio is also much
less expensive, which allows greater repetition of the messages. Moreover, the
variety of stations on the air facilitates the targeting of messages to very narrowly
defined groups, which can be identified through marketing reports used by the
industry. For a national campaign, a major disadvantage of radio is the large
number of independently owned stations that need to be approached, even with a
focus on major markets. For certain audiences, such as adolescents, nationally
syndicated programs with celebrity "disk jockeys" might provide a more feasible
venue. .

The print media are less able to command attention than the broadcast media, but
they can be used to reach finely differentiated target groups. And because print
advertisements, brochures, and feature articles can be reread and invite reflection,
they are better suited for presenting rational arguments or detailed information
(McGuire, 1989).

A media plan should rely on audience rating systems and formative research to
identify which specific stations, programs, or print media are the best vehicles for
reaching the target audience at the lowest cost per contact. Obviously, the right
"media mix" varies according to the particular audience being addressed.

An issue that cannot be satisfactorily answered is what does, in fact, constitute
"adequate" exposure. Public communication specialists have not extensively
studied this issue in health campaigns because, historically, they have relied on
public'service time or have had small budgets to work with. Only two broad
generalizations can be offered as guidance. First, repetition helps draw attention
to the message (Solomon, 1983), facilitates learning, and increases liking for the
message. However, repetition can be Count8rprOdUCtiV8 if it iS excessive and turns

the message into a cloying annoyance (Bornstein, 1989). Second, airing ads in
high-frequency bursts (or "flights") is superior to having the same number of ads

drawn out over a longer period (Atkin, 1979).

60


Precise guidance is lacking, however,.since the right amount of exposure depends
on too many variables -- the nature of the target group, the precise objective, the
complexity and `entertainment value of the message, the nature and extent of
competing messages, and so forth,- Because there is no valid way to measure
advertising effectiveness, even commercial advertising agencies do not always
know which media should be selected or how frequently they should be used to
achieve a particular advertising objective (Sissors & Surmanek, 1987).. Audience
tracking studies can be executed as the campaign is launched to gauge audience
exposure to thecampaign message. In general, such stud/es will not be a priority
for health campaigns operating on limited budgets. But if severe doubts about the
media plan develop, focus groups could be used in lieu of a formal audience survey
to see how the plan might be modified (Solomon, 1989).

While public health advocates typically turn to the traditional media -A television,
radio, and print -- for mass communications campaigns, there is, in fact, a diversity
of media venues to be considered, including billboards, transit cards, newsletters,
videotapes, and booklets. New advertising venues will continue to emerge. The
Whittle Corporation developed several new venues during the 198Os, including
commissioned books distributed free to the nation's opinion leaders; message
boards for school gyms; and, with much controversy, daily news programming
beamed to high schools via satellite. Other new developments include screen
advertising in movie theaters (Atkin & Arkin, 1990) and the use of "dial-in" phone
messages, which are promoted in billboard and print advertisements (OSAP,
1990).

SSO
LE N

Many public service campaigns that use television and radio simply fail to reach
their intended audience (Flay, 1986; Flay & Sobel, 1983; Warner, 1987). Public
service advertising developed by the Advertising Council and others is typically
used by broadcast stations as "filler" and is often aired at off-hours with small
audiences. Of particular concern, television public service ads are infrequently
aired during prime time when preteens and adolescents are viewing (Hanneman,
McEwan, & Coyne, 1973). This has been a long-standing problem, but it has been
worsened by the loosening of broadcasters' public service obligations during the
1980s (Atkin & Arkin, 1 990)14.

l4

   In response to this concern, there were calls at the December 1988 Surgeon General's
Workshop on Drunk Driving for commensurate time for "responsible drinking" messages as a coun-
terweight to beer and wine advertisements (OSG, 19891. A similar lift was given to the anti-
smoking movement in the late 1960s when the Federal Communications Commission (FCC) applied
the fairness doctrine to tobacco advertising on radio and television and required stations to provide
anti-smoking groups with free time to air their views (Flay, 19871.  When tobacco advertising was

61


Because campaign organizers want to ensure audience exposure to their campaign,
the competition for donated time is fierce. A public service campaign's success in
winning donated time depends in part on the issue involved and its perceived
importance to media "gatekeepers" who establish public service priorities for each
broadcast station. The Centers for Disease Controi's AlDS campaign, for example,
received more than $28 million in donated air time from October 1987. through
February 1989. A 1989 survey showed that 22 percent of U.S. adults recalled
seeing or hearing during the past month a.public service announcement with the
slogan "America Responds to AIDS" (Dawson, .1989). It has also been observed
that local gatekeepers will respond more favorably to public service spots that are
"creative" and that have local program or agency taglines or allow a local station to
add their own (Freimuth & Van Nevel, 1981; Hammond et al., 1987; Goodstadt &
Kronitz, 1977).

Public health advocates have responded to the intensified competition for public
service time by trying to build relationships with the media gatekeepers (Maccoby
& Alexander, 1980). For example, in implementing the Asbestos Awareness
Campaign, the project staff made special efforts to persuade the gatekeepers in 16
target communities to air the public service announcements, including personal
contact, press kits, and fact sheets (Freimuth & Van Nevel, 1981). At the national
leveli the Harvard Alcohol Project was able to secure the cooperation of the three
major networks to produce and air prime-time advertising to promote the
"designated driver" concept (DeJong & Winsten, 1990b).

Some recent campaigns have purchased air time, using it exclusively or in
combination with public service time (Bauman et al., 1988; Wallack & Barrows,
1982-83; Worden et al., 1988). This strategy is controversial within the public
health community. While some health advocates focus on the need to get their
messages on the air in the best time slots, others express concern that paying for
media time will cause the broadcasters to demand payment for other public service
advertising (Bloom & Novelli, 1981; Dessart, 1990).

Clearly, however, the restricted financial resources of nearly all public health
agencies limit the extent to which this approach can be used, especially with
television. Even the U.S. Department of Health and Human Services, which
sponsors numerous health promotion campaigns through the Public Health Service,
generally does not have funding for buying airtime (Warner, 1987). Some local
stations have recently received public.ity for selling air time for public service
campaigns at greatly reduced rates (Meyers, 1989), but the cost still remains too

banned from the broadcast media in 1971, the mandate for an?i-smoking advertisements ended as
well (Wallack, 198 II. Similar action by the FCC on alcohol advertising now appears to be
extremely unlikely (Colford, 1989).

62


high for most public health programs. Radio, billboards, and transit cards represent
more realistic alternatives for paid public health advertising (Arkin, Denniston, &
Romano, 1990).

Corporate sponsorship might provide a partial answer to this funding problem. For
example, anti-drug spots developed by the Media-Advertising Partnership for a
Drug-Free America are frequently aired through a combination of donated time,
both nationally and locally, and corporate sponsorship.

Another possibility is to work directly with broadcasters to develop a new
campaign. In local communities, a broadcast station might want to develop an
exclusive, station-sponsored campaign, one that focuses the station's energy on a
single problem of public concern (Wishnow, 1983). Occasionally, a major network
will undertake such a campaign as well, as evidenced by CBS's involvement in the
"Be Smart. Don't Start!" campaign (Atkin, 1989a).

In station-sponsored campaigns, newscasts, documentaries, talk shows, public
service announcements, and editorials work in sync to inform and motivate the
public and to offer solutions, either in the form of individual/collective action or a
change in public policy. For some campaigns, the station or network will work in
partnership with business, government, and voluntary organizations to create a
direct intervention, such as print materials, smoking cessation kits (Sallis, Flora,
Fortmann et al., 1985), and special events. Station managers find that such
campaigns serve the station's needs by bringing community recognition and
acclaim, which in turn increase ratings for local programs. Corporate sponsors can
be asked to provide funding in return for on-air mention of their involvement.

For certain issues, such campaigns provide a unique opportunity for public health
advocates to achieve their health promotion objectives. For example, in
Washington, D.C., WRC-TV sponsored a prenatal health care campaign, "Beautiful
Babies: Right from the Start," which featured a series of news reports,
documentaries, public service announcements, and editorials. Most notably, local
obstetricians participated in distributing coupon books that offered a variety of
products and services at reduced COSti many of them directly related to prenatal
and child care. As a result of the campaign, more than 60,000 coupon books
w.ere distributed. After 18 months, prenatal visits to public health clinics had
increased 22 percent and infant deaths had declined 6 percent (Bollier, 1989),
although campaign organizers acknowledge that the campaign's contribution to
these changes cannot be proven.

63


ESON 7: INCORPORATE THE STRATEGIC US.E OF TELEVISION
ENTERTAINMENT AND NEWS PROGRAMMING

Mass communication campaigns have traditionally involved the use of public
service advertising, including radio and television spots, print ads, billboards,
posters, and printed literature. More recently, .several public health advocates have
argued that campaign planners should think more expansively about how the mass
media can be used to reach the public, moving beyond the realm of public service
announcements to include news and entertainment programming as part of a
single, unified campaign (Atkin & Arkin, 1990; Men.delsohn, 1973). The failure to
use such programming as vehicles for health education represents a missed
opportunity. Beyond that, however, this failure frequently results in the public
being exposed to conflicting messages that undermine the campaign (Atkin, 1979).
The advantages and limitations of using entertainment and news programming are
reviewed here.

Television Entertainment Proaramminq

As the "most effective purveyor of language, image, and narrative in American
culture,1' (Marc, 1984), television is an important influence in shaping cultural
norms, public opinion, and behavior. Television programming not only mirrors
social reality but helps shape it, by communicating what constitutes popular
opinion and by influencing people's perceptions of the roles and behaviors that are
appropriate to members of a culture (Roberts & Maccoby, 1985; Signorielli, 1990).
For many people, and for children and adolescents especially, television.pro-
gramming is a key source of information about how the world works and how one
should behave in that world (Atkin, 1989b; Roberts, 1989).

Unfortunately, because plots and script lines are selected primarily for their
entertainment and artistic value, a great deal of the health-related information that
is presented on television is inaccurate, misleading, or antithetical to good health
(Atkin, 1979; NIMH, 1982). For example, recent data show that, while drug and
tobacco use is infrequently shown on television, the portrayal of alcohol use
averages several "acts" per hour, far more often than several other more popular
beverages, including water (Signorielli, 1990). In combination with beer and wine
advertising, this barrage overwhelms the message from infrequently aired public
service advertising that urges preteens and young adolescents to abstain (Wallack,
1990a).

As a result, public health advocates have pursued two strategies for working with
the entertainment industry to promote lifestyle changes and healthier behavior: 1)
consulting with producers, writers, and directors concerning the content of regular
entertainment programming (Breed & DeFoe, 1982; Montgomery, 1989, 19901,

64


and 2) collaborating in the production of special programming around health
promotion themes (Mendelsohn, 1973).

Consultation with the Entertainment Industry. While lobbying the U.S.
entertainment industry has been common over the last 20 years, this strategy has
been given new impetus by the highly publicized Harvard Alcohol Project, a
university-based campaign designed to prevent drunk driving through promotion of
the designated driver concept via entertainment programming and network-
sponsored public service announcements (DeJong & Winsten, 1990a, 1990b;
Winsten, 1990). After three television seasons, messages consistent with the
project's agenda have appeared in over 100 shows, including both dialogue and
the display of a designated driver poster developed by the project. While several
would-be imitators have been inspired by the Harvard project, several facts about it
point to its limitations as a model for other health promotion efforts.

The director of the Harvard project was afforded access to top executives of major
Hollywood production studios through the direct intervention of Dr. Frank Stanton,
former president of CBS and, at the time, a member of Harvard's Board of
Overseers. As Montgomery (1989) notes, producers in general have sought to
keep outside lobbyists at arms length. As a result, "Hollywood lobbyists" usually
devoted a number of years to bui1ding.a small network of supporters in the
industry, largely through hosting seminars, panel discussions, or lectures. In more
recent years, however, the most successful lobbying efforts have been set up by
industry insiders or greatly assisted by them and have used those personal
connections as a basis for private discussions with individual producers
(Stevenson, 1990). Obviously, few public health advocates can rely on that kind
of insider support and will find access extremely difficult to achieve.

The designated driver concept itself has several important features that distinguish
it from other public health/topics and make it a more attractive theme for
producers and network executives. First, Mothers Against Drunk Driving (MADD)
and other advocacy groups had already aroused public concern about the drunk
driving problem. Because shifts in social norms regarding the acceptability of
driving after drinking had already begun, the role of the television industry could be
accurately described as one of reinforcing an emerging trend rather than
"engineering" a new one. This fact helped deflect criticism that a systematic effort
to influence public opinion and behavior through entertainment programming was
an abuse of concentrated media power.

Second, the designated driver message could be easily incorporated into
programming on a routine basis, especially since scenes involving alcohol use are a
staple of television programming (Breed & DeFoe, 1981; Gerbner, 1990). The
introduction of other public health topics -- drug abuse, AIDS, teenage pregnancy,
organ transplantation -- represents a more radical departure from standard


programming fare. Many of these health issues lend themselves to dramatic
treatment, but only as a special episode or program. Such programs might be
worthwhile for drawing attention to an issue, but they should not be seen a tool
for bringing about substantial. change over the long-term.

Third, the designated driver message, by emphasizing individual responsibility to
prevent the drunk driving, meets the television industry's need to do something
positive while not. alienating the alcohol industry, on whom broadcasters depend
for a significant portion of their advertising revenue ("Advertiser Report," 1990;
Wallack, 1990a). Indeed, many public health experts worry that the Harvard
campaign has taken the pressure off the television networks to modify alcohol
advertising practices that appeal to minors. In general, the television industry is
more likely to focus on politically non-controversial subjects or solutions -- an
important limitation (Montgomery, 1990).

A restriction commonly shared by any effort to use television entertainment
programming to communicate a public health message is the inability of outside
organizations to control programming content. Fbr example, guidelines developed
by the Harvard Alcohol Project emphasize that promotions of the designated driver
concept should not imply that it is socially acceptable or even expected that the
driver's companions will drink to excess. (DeJong & Winsten, 1990b). Even so, a
few television episodes that mentioned the designated driver concept did so in a
way that directly violated this important guideline.

Develooment of Soecial Proaramming. A second option for working with the
entertainment industry is to collaborate'in developing special health-related
programming. While programs aired nationally are an occasional possibility
(Montgomery, 1989), true col!aboration is more likely to occur at the local level.
As one example, the ongoing Stanford Five Community Project initiated its
education program with the airing of a locally produced hour-long documentary
("Heart Health Test") that provided general information on cardiovascular risk
reduction (Farquhar et al., 1985a). Development of special programming is par-
ticularly useful for audiences that are not well-served by the major networks, such
as Latinos (McAlister et al., 1987; Mendelsohn, 1973).

News Proaramminq

Public health advocates have long recognized the importance of obtaining favorable
news coverage to support the objectives of a health campaign designed to promote
behavior change. Especially valued is the greater visibility and the "third-party
endorsement" of campaign messages that news stories can bring (Alcalay &
Taplin, 1989; Goldman, 1984).

66


In recent years, this strategy has been given renewed prominence by public health
advocates wanting to promote changes in public policy. What they call the "media
advocacy" approach features a variety of public relations strategies to stimulate
media coverage that will serve to reframe ho.w the general public and opinion
leaders conceptualize a public health problem, and to promote a consideration of
public policy options (NCI, 1988; Wallack, 1990b). This strategy is especially
important when the policy changes being urged threaten commercial advertisers
who financially support the media.

A number of guidelines should be followed in Seeking news coverage. First, it is
important to have clear objectives for what 4s to be achieved through news
coverage. Publicity for its own sake is an insufficient reason. In 1.988, for
example, the Harvard Alcohol Project issued a press release announcing that the
major television production studios had agreed to introduce the designated driver
concept in entertainment programs. The resulting page-one story in The New York
Times (Rothenberg, 1988) served several purpo$es: giving additional visibility to
the issue of alcohol-impaired driving, directly promoting the designated driver
concept, and establishing the institutional identity and stature of the Harvard
Alcohol Project itself. But the principal rationale for issuing the press release was
to solidify the production studios' commitments through public exposure, an ob-
jective which was achieved.

There are other considerations to using this strategy successfully. Foremost, the
press announcement must present information that has real news value15. Public
health advocates too often assume that all of their activities, because they are
important, are also "newsworthy" (DeJong & Winsten, 1990a). Instead, public
health advocates must understand how news institutions define the "news," the
incentives to which reporters and `editors respond, and their preferences for how
news information is packaged and presented (Atkin & Arkin, 1990; Bantz,
McCorkie, & Baade, 1980; Stuyck, 1990).

Generally, for health-related information to be defined as news it must be more
than new. The story must also -have aspects that make it especially attention-
grabbing. Meyer (1990) lists several factors that contribute to a story's appeal:
timeliness, geographical proximity, prominence of the people involved, human
(emotional) interest, controversy, novelty, and potential impact on people's lives.
Stuyck (1990) adds another important factor: the story's potential for creating
more informed health consumers. Thus, campaign planners must think creatively
about how they can get reporters interested in their message or story.

   As explained by Alcalay and Taplin (79891, press releases can announce an upcoming event
and invite the press to cover it; issue a public statement on a news development or issue; or
provide background information that gives perspective on late-breaking news.

67


There are several standard ways of achieving this. One is to issue a survey report
or other research findings that give new insight into a health problem and its
solutions (Wallack, 1990b). For local news coverage, national data have to be
given a local perspective (NCI, 1988). Another is to,announce upcoming program
events. Indeed, when deciding what steps to take next in a program or-campaign,
planners should take into consideration the public relations value of the various
alternatives (Goldman, 1984). The American Cancer Society., for example, found a
powerful idea in its Great American Smokeout, which continues to generate news
coverage year after year (Flay, 1987). Yet another means of generating news
coverage is to create "media events" such as-receptions, speeches, policy debates,
awards ceremonies, or special fund-raising events (Player, 1986; Wallack, 1990b;
Warner, 1987). Staging events for television is es'pecially important, as stories
with a strong visual element are given higher priority (Klaidman, 1990).

Another consideration is that the press announcement must be timed properly so
that it does not compete with other stories (DeJong & Winsten, 1990a). While
campaign planners cannot fully anticipate the flow of world and national events,
certain days are typically -"slower" news days than others. Knowing this, staff for
the Harvard Alcohol Project issued its aforementioned press release in late August,
when Congress is typically in recess and many news-making organizations are
enjoying a vacation lull.

To maximize its serious consideration, a press release is best addressed to
reporters with whom the campaign planners have established credibility over time,
perhaps by serving as a background source for other stories. On occasion,
relationships with the press can be nurtured by offering periodic exclusives, al-
though it must be cautioned that overusing this strategy might eventually alienate
those relationships. Relationships with print reporters are especially critical, since
local broadcast media often rely on area newspapers when determining what
stories to cover.

A relatively new means of generating press coverage is the distribution of so-called
"video news releases," which are professionally produced program segments
suitable for use on evening news programs, TV magazine shows, or
documentaries. Unfortunately, production expenses do not make this a reasonable
alternative for many public health agencies (Kleiner, 1989; Davis, 1988). On the
other hand, "audio news releases" for use on radio might be an effective
alternative, especially if only a limited number of radio stations are targeted.

In considering the advantages and disadvantages of trying to generate supportive
news coverage, public health advocates must recognize that the news media are
an imperfect instrument for communicating health messages (Stuyck, 1990). First,
because broadcast news programming thrives on political controversy, it provides
limited opportunities for providing clear and conSistent messages health messages.

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This fact was amply demonstrated by, press coverage of New York City's
announcement of its 1987 AIDS campaign aimed at promoting condom use among
heterosexuals. Several television reports aired the campaign's spots as part of
their news coverage, thereby furthering the objectives of the campaign. On the
other hand, these reports also featured interviews with a clerical spokesman for
the Catholic Archdiocese of New York, who objected strongly to the "graphic"
portrayals in the campaign's television spots and their implicit endorsement of
"promiscuity." In further support of his attack on the campaign, this spokesman
asserted that the condom's high failure rate made it a poor choice in AIDS
prevention efforts. This claim, which failed to account for consumers' sometimes
improper or inconsistent use of condoms (Sherris et al., 1982), was not challenged
in any of the news reports.

Second, the competitive pressures on news reporters frequently resulted in
incomplete investigative reporting and the sensationalized treatment of tentative
scientific findings, both of which contributed to public confusion and panic. In one
especially important case, a study reported in a- 1983 issue of the Journal of the
American Medical Asociation hinted that "routine contact" among household
members might be sufficient for AIDS transmission to occur. Although subsequent
studies showed that the disease was not spread through casual transmission, and
although these studies -were covered in turn by the news media, the initial stories
nevertheless had a residual effect (Milavsky, 1988). This residual effect was
sustained in the mid-1980s by continuing coverage of public hysteria about AIDS,
as manifested in the boycotts of schools attended by AIDS victims, public arrests
of AIDS patients by police wearing protective gloves, and so forth.

Recognizing the inherent limitations in' using news coverage to carry forth a health
promotion message, some health advocates have begun to create their own
publications, a strategy also used.in the commercial sector. The Philip Morris
tobacco company, for example, publishes Philio Morris, a "lifestyle" magazine that
is distributed free to self-identified smokers. At one level, the magazine serves as
a company-controlled venue for its standard print advertising, but the magazine
also reinforces the reader's self-definition as a smoker by publishing articles,
features, and consumer advertising that associate this identity with an active,
upscale lifestyle. The magazines also presents a political agenda that portrays
smokers as an "oppressed" minority; direct mail solicitations sent to subscribers
encourage them to put pressure on State and local politicians to defeat anti-
smoking ordinances and legislation (Sylvester, 1989). A public health counterpart
to Philio Morris is 2001, a slick and highly popular "lifestyle" magazine distributed
free to teens by the Alberta Alcohol and Drug Abuse Commission (AADAC) in
Canada as part of its general campaign to promote healthy lifestyles that exclude
alcohol, tobacco, and drug use ("Unique Magazine," 1988-89).

69


SYNC WITH COMMUNITY-BASED PROGRAMS

Both the Stanford and North Coast studies suggest that mass communications
alone, when properly designed and executed, can produce behavior change. Even
so, both sets of investigators later turned to demonstration `projects that used
mass media in tandem with community-based programs -- the Stanford Five
Community Study (Farquhar et al., 1985a), and the "Quit for Life" campaign in
Sydney, Australia (Dwyer, Pierce, Hannam, & Burke, 1986; Pierce, et al., 1986).

It has long been recognized that a media-driven health promotion campai'gn is more
likely to succeed in changing behavior when other program components are in
place, a condition that Lazarsfeld and Merton (1971) have called          i
"supplementation." Accordingly, many researchers emphasize that media
approaches should work in sync with community-based program components that
involve long-term, face-to-face education and community reorganization (Alcalay &
Taplin, 1989; Flay, 1986; Solomon, 1983; Wallack,. 1980). Media can support
these local programs in several ways. In turn, these programs can reinforce a
media effort by giving shape to an audience that is primed to attend to the media
campaign (Flay, Hansen, Johnson et al., 1988; LaRose, 1989) and by helping link
the media campaign to local concerns and issues (O'Keefe & Mendelsohn, 1984).

Those who favor using mass communications with community-based programs
note that many problems, such as cancer prevention and cardiovascular risk
reduction, involve altering long-standing habits and complex behavior patterns.
The Stanford study described earlier showed that a media campaign alone, while
producing an reduction in overall risk,. had a demonstrable impact only on fat
consumption but no long-lasting effect on smoking or leisure-time physical activity.
The same issue arises with substance abuse. While some have endorsed using
mass communication campaigns to reach. high-risk youth whose profile makes their
abuse of drugs more likely (Worden et al., 1988; Wallack, 1986), most
investigators do not endorse this approach, since a person's psychological make-up
is a product of life experience and is extremely difficult to change even with direct,
intensive intervention. As a result, many programs try to induce members of
target audience to participate in programs with face-to-face intervention or to use
specially crafted self-help programs (Lefebvre et al., 1988).

In other cases, standard mass communications approaches will be thwarted
because of political controversy. For example, to encourage condom use for AIDS
prevention, there is a need for motivating messages that focus on how condom
use can bring sexual pleasure; failure to do so means ignoring the principal
psychological barrier that impedes condom use by U.S. consumers (Solomon &
DeJong, 1986, 1989). Reacting to widespread public sentiment against
contraception, and wanting to avoid the political or economic pressures that would

70


ensue, television broadcasters have established standards that make it impossible
to use paid or public service advertising for'this purpose (DeJong & Winsten,
1991)`? With these restrictions in. view, health advocates would better focus on
community-based education programs that stress condom promotion or local social
marketing programs (DeJong, 1989; DeJong & Winsten, 1991). Local broadcast
media could support these programs by publicizing them and directing people to
information hotlines.

Mass media campaigns can be used in several ways to enhance the effectiveness
of community-based programs (Flay, 1986.; Wallack, 1980, 1981). First, mass
communications can be used to enroll new program participants, recruit volunteers,
or win financial support. Second, mass communications can announce the
availability of self-help materials, ongoing program activities, and special events
(Flay, 1986; Mendelsohn, 1973). Third, mass communications can reinforce the
instruction provided by school-, worksite-, or other community-based programs,
including skill development, self-monitoring, and other maintenance activities (Flay,
1986). In this case, the mass media materials should also work on their own,
since many of those who are most in need of prevention education attend school
irregularly (Worden et al., 1988) or are not reached by community programs
working under limited budgets. At a minimum, messages from the mass com-
munications campaign and these other components should be consistent; ideally,
their activities should be guided by an integrated campaign strategy.

While having mass media and community-based programs work together is, in
principal, a sound idea, the issue of cost-effectiveness and other practical concerns
should not be forgotten. Hornik (1989, p. 312) expresses strong reservations
about the widely held view that interpersonal channels should predominate: ". . .
from the point of view of cost, of:feasibility, and of sustainability, organizing a
face-to-face network is rarely possible." In his own study of a Swaziland program
to promote oral rehydration therapy (ORT), Hornik found that a series of radio
programs, given their broad reach among the target audience, were a much more
effective strategy than using interpersonal channels such as clinic-based health
care professionals, health extension agents, and trained community volunteers.

Warner (1987) makes a similar point, noting that a mass communication campaign
needs only a small success rate to produce change among a far group of people
than can be reached through conventional community-based programs that have
much higher success rates. Cost-effectiveness is therefore a more suitable

"

   Television entertainment programming offers greater leeway for introducing motivating
messages, but they cannot be incorporated into programming often enough to make a critical
difference and must be "balanced" by the inclusion of opposing viewpoints (Montgomery, 1990).
News programming, because of its focus on political controversy, is similarly limiting.

71


criterion
projects
1984).

for judging health promotion strategies. Even so, major health promotion
have devoted very little attention to assessing per unit costs (McGuire,

LESSON 9: USE MASS COMMUNICATIONS TO FOCUS ATTENTION ON THE
SOCIAL, ECONOMIC, AND CULTURAL FACTORS THAT IMPACT HEALTH-
RELATED BEHAVIOR

So far we have examined campaigns from the standpoint of trying to effect change
in the knowledge, attitudes, and behavior of individuals. An increasing number of
public health experts have argued that a number of health problems, especially
those resulting from lifestyle behaviors, can only he understood and dealt with by
focusing on the social, economic, and cultural context in which they occur (Atkin
& Arkin, 1990; Alcalay, 1983; Gerbner, 1990; McLeroy et al., 1988; Wallack,
1984, 1986, 1990a).

In their view, it is inappropriate and self-defeating for prevention campaigns to put
the onus on the individual for changing his behavior while failing to change the
business and legal environment in which that behavior occurs. Ultimately, changes
in institutional structures, public policy, or law can lead to greater resources being
allocated to a problem and to environmental and social changes that will support
and sustain the efforts of individuals to alter their behavior. In the case of
adolescent substance abuse, for example, there is a need for increased public
debate on issues related to the cost, availability, and promotion of alcohol and
tobacco (Mosher & Jernigan, 1989), and on policy changes that might discourage
substance use, such as stricter enforcement of laws prohibiting alcohol sales to
minors, the elimination of cigarette vending machines, and increased excise taxes
to provide funding for school- or community-based programs that provide direct,
high-intensity interventions for high-risk youth (Tobacco Education Oversight
Committee, 199 1).

In this context, the agenda-setting function of mass communications can be more
broadly conceived to include targeted messages to official policymakers (Wallack,
1986) or community opinion leaders (Black & Farley, 1977; Rogers & Shoemaker,
1971). Directing awareness campaigns to business and civic leaders, what
Schwartz (1973, 1983) calls "narrowcasting," can be an especially powerful way
of moving a problem to the top of a community or national agenda. As one
example, the first phase of a Swedish campaign to promote condoms was to sell
national opinion leaders on the importance of combatting venereal disease and to
improve the condom's image as an acceptable, even respectable contraceptive
(Ajax, 1974). Having established the need for concerted action, campaign
organizers were able to move ahead with a marketing effort that included

72


introducing new condom brands and specialty retail outlets17. Importantly,
business and civic leaders can be reached through radio and newspapers whose
lower advertising rates make a pa/d campaign feasible (Alcalay & Taplin, 1989;
NCI, 1988).

An important role for social marketing approaches is to promote citizen
involvement in community-based efforts to promote social, institutional,
environmental change. As one example, parents of preteens and adolescents can
recruited to participate in local parents' groups that sponsor alcohol- and drug-free
parties, cooperate with police in monitoring local conditions, and advocate changes
in public policy, such as the development and enforcement of stricter school
policies, more conscientious enforcement of existing laws on the sale and
distribution of alcohol to minors, and new legislation setting a legal limit of .OO
percent BAC for underage drivers or imposing dr,iver's license sanctions for the
purchase or possession of alcohol by minors.

In the end, once legislation or other policy chan.ges have been implemented, mass
communications provide a superb vehicle for publicizing them -- not just through
news coverage, but also through special advertising and promotions. In drunk
driving prevention, for example, widespread publicity of "sobriety checkpoints" and
other law enforcement measures has proven to be essential. In the absence of
such. publicity, such efforts have no discernible impact (Ross, 1988).

LESSON 10: INCLUDE PROCESS AND OUTCOME EVALUATIONS AS PART OF
THE CAMPAIGN

Early program planning should incorporate both process and outcome evaluation
activities to monitor progress and demonstrate project impact (Lau, Kane, Berry, et
al., 1980; Wallack, 1984). Unfortunately, the common failure to evaluate mass
communication campaigns has impeded progress in understanding what works and
what does not (Arkin et al., 199.0).

The behaviorist tradition of most campaign evaluations (Gitlin, 1978; Wallack,
1984) has failed to capture the diversity and complexity of mass media effects,

l7

   On occasion, a mass communications campaign will need to focus on convincing opinion
leaders and the public at large that a particular institution should take responsibility for addressing a
health problem. A substance abuse prevention campaign by the Alberta Alcohol and Drug Abuse
Commission (AADAC) began in this way. Because the AADAC had been associated in the public
mind with efforts to control and treat derelict alcoholics, the first step of the campaign was to use
advertising to position the AADAC as an innovative, forward-looking agency that was concerned
about youth and alcohol while not being "neo-Prohibitionist" Gkirrow, 19871.

73


many of which, as noted before,. set the stage for or otherwise promote behavior
change in the long term., Evaluations should be designed to capture these effects.
As one example, if a campaign's objective is to move an issue to the top of the
public agenda, the project's success can be established by tracking the number of
news stories before and during the campaign, the, number of legislative proposals
submitted and passed, the number and size of grassrobts advocacy groups, and so
forth (Roberts & Maccoby, 1985; Wallack, 1980).

In most cases, evaluators will rely on the collection of survey data. Researchers
often express concern about the honesty of self-reports, especially when they
concern socially undesirable or criminal behavior such as illicit drug use. Even with
respondents remaining anonymous, however; their answers to survey questions are
known to be influenced by a desire to give socially acceptable answers. Moreover,
the data's validity might change over time, perhaps in response to the very
campaign being investigated, if admission to the behavior in question becomes
more or less socially acceptable (DeJong & Winsten, 1991; Wallack, 1986).

These concerns are important, but certain prec&tions can be taken to minimize
them. Respondents are likely to provide valid and reliable information if they are
reassured that their answers will be kept in confidence (Rouse, Kozel, & Richards,
1985). In addition, the survey instrument can be carefully constructed to build in
reliability cross-checks. Also, questions that measure respondents' propensity to
give socially desirable answers, such as the Marlowe-Crowne scale (Crowne &
Marlowe, 1964) can be included to factor out that source of bias.

To complement these survey data, program evaluations can also cqllect
community-level data on product sales or other objective indicators that would be
expected to change in response to the campaign. Doing so only makes sense, of
course, when the campaign is of sufficient intensity and duration to reach a sizable
proportion of the community.

Local or Reaional Camoaians

To test the impact of a long-term local or regional campaign, the research design of
choice is a "quasi-experimental" design in which the knowledge, attitudes,
behaviors, and health outcomes of people in experimental communities exposed to
the campaign are compared to those in similar control communities (Farquhar et
al., 1984; Flay & Cook, 1989). Fiscal limitations often restrict the use of each
experimental condition to just one community (Flay & Cook, 1989). The design is
called "quasi-experimental" because the communities are not randomly assigned to
experimental conditions.

A pre-campaign survey, conducted either by telephone or face-to-face, is typically
administered to establish baselines in both experimental and control communities.

74


Subsequent surveys are conducted during and after the campaign with the same
respondents to.assess change (these are chilled "cohort" or "panel" surveys).
Subsequent data analyses often focus .on those persons at greatest health risk,
when they can be identified (Flay -& Cook, 1.989). To control for the effects of
repeated testing, companion surveys are often done that involve a new,
independently drawn sample ("cross-sectional" surveys). Ideally, that sample
should be drawn at random from the target population". Depending on the
project, physiological measures might also be recorded.

The later surveys typically include questions that assess each individual's exposure
to the campaign. The most conservative approach to analyzing the. data is to
include all respondents, regardless of their exposure.  But it is useful in some cases
to conduct post hoc analyses that compare those who have been exposed to the
campaign with those who have not, recognizing that the lack of random
assignment to these subgroups makes the meaning of such differences ambiguous
(Lau et al., 1980). Brown, Bauman, and Padgett (1990) have identified another
significant drawback: Respondents often cannot report accurately whether they
have been exposed to a campaign, especially when the campaign's materials do
not stand out from those of similar campaigns.

The principal difficulty with this quasi-experimental design is that the communities
will differ in important ways before or during the study (Flay & Cook, 1989; Lau et
al., 1980). Even when efforts are made to match the two sets of communities on
a score of relevant variables, there is always the possibility that other unmeasured
differences between the communities .will contribute to or masking any differences
in outcome. Only the random assignment of very large numbers of .communities to
treatment conditions can obviate this problem, but that is fiscally impossible in
most cases.

Another threat to the validity of this design is the occurrence of events that affect
one community more than another (C&mpbell & Stanley, 1983; Cook & Campbell,
1979). Concern over this potential problem has promoted organizers of the
Pawtucket Heart Health Program to conduct content analyses of the major
newspapers in each of its test communities and to conduct yearly interviews with
health agency officials to learn about other interventions and their participation
rates (Assaf, Banspach, Lasater et al., 1987; Lefebvre, Lasatar, Carleton, &
Peterson, 1987).

   The highly touted Media-Advertising Partnersha for a Drug-Free America (Black, 1988)
conducted both a benchmark and one-year follow-up studies using matched samples of children
ages 9 to 12, teenagers ages 14 to 17, college students, and adults. So that respondents would
remain anonymous, the evaluators used a "mall-intercept" procedure to recruit questionnaire
respondents. Unfortunately, this procedure results in the selection of non-random samples.

75


A final limitation is that the mass media interventions themselves are complex,
which makes it impossible to derive definitive inferences ,about what each
individual component.adds.to the campaign. For this reason, the quasi-
experimental research design employed by Bauman et al. (1991) is especially
noteworthy. In this study, three different campaign variations were tested in
different communities: radio spots alone; radio spots, plus a sweepstakes; and
radio spots, a sweepstakes, and television spots.

National Camoaian$

Testing the impact of a national campaign is extremely difficult, for with use of the
national media, it is usually impossible to create meaningful comparison groups.
An exception is when the intensity of the campaign can be varied acrdss media
markets. The Media-Advertising Partnership for a Drug-Free America reported, for
example, that greater change in negative attitudes toward drugs was found in ten
U.S. media markets that received a 50 percent greater exposure to the campaign
materials (Black, 1988). Unfortunately, the high-exposure areas were not selected
at random and may have differed in important ways from other areas of the
country.

A good alternative is to collect time-series data on attitudes and self-reported
behavior. A good example is the work by Warner (1989) on the impact of the anti-
smoking crusade that began with the Surgeon General's report in 1964 and that
included extended news coverage, anti-smoking public service announcements,
and other media elements. Warner's strategy was to develop mathematical models
that described trends in per capita cigarette consumption in the United States
before 1964, to project post-1964 consumption based on those models (that is, as
if the intensive anti-smoking campaign had never occurred), and then to compare
those projections to actual consumption". Warner (1977) notes several
deficiencies in this commonly used measure of tobacco consumption, particularly
that it masks changes in the composition of the smoking population and that it
does not distinguish changes in smoking status from a mere reduction in smoking.

There are limitations to the time-series method. First, time-series modeling requires
that reliable and valid data are available for an extended period of time. In many
cases, the only data available will be broad indicators, such as statistics on
alcohol-related traffic fatalities, rather than specific indicators of project objectives,

Is

   The predictive mathematical models include the following variables for each year studied
beginning in 194 7: the value of the cigarette price index; the natural logarithm of the last two
digits of the year, which reflects a natural increase over time in the smoking population, primarily
due to more widespread use by women and increased consumption by existing smokers; and the
per capita consumption for the previous year, which reflects the contribution of "habit. w

76


such as greater use of designated drivers.  Such measures must often come from
survey data. Unfortunately, many projects will find that detailed surveys on their
topic area have not been done before.

A second limitation of the time-series method is the extreme difficulty of
disentangling a mass communication campaign's contribution from that of other
programs or even from broader historical trends or events. For the purposes of
program evaluat.ion, the time-series technique requires that there be a signal event
whose occurrence can be precisely defined in time, such as the beginning of a new
anti-smoking campaign in a government-controlled media environment (e.g.,
Doxiadis et al., 1985) or the introduction of. a new concept such as .designated
driver (DeJong & Winsten, 1990b). In the field of public health, however, the
occurrence of such events at the national level is rare.

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  94 PERCENT AWARENESS
AND STILL NOT ENOUGH DONORS

CAN PUBLIC EDUCATION INCREASE
    ORGAN DONATION?

John Davis, National Kidney Foundation, Inc.

Introduction

Every public opinion survey regarding organ donation and transplantation shows
one undisputed fact: the American people are very aware of organ donation. They
always respond at rates over 90 percent to questions about awareness. Yet, the
donor shortage goes on. Something must still be needed that will translate
awareness into a larger supply of organs.

This paper explores the-role of public education in that relationship. It looks at
what we in the transplant community have done to educate the public and what
we.would like to do. It also examines some of our basic assumptions and some of
the conventional wisdom which has guided our planning. It isn't possible to
calculate the amount of money, time, and energy we have devoted to public
education. It has been considerable. We have achieved an awareness of 94
percent (1). That is a major accomplishment. Still, we don't have enough organs.

Can public education increase organ donation? The answer is no, not by itself. It
is unrealistic to think that if we could just educate the public more, or better, the
shortage would disappear. Public education is important, but it alone cannot
increase the supply of organs, Its role is a supportive one, not a primary one.
That concept challenges our basic assumptions about what public education can
and should do and how we should conduct it.

Why is organ donation so different?

0    It is not something you can do yourself.
  0    It is not something that benefits you at all.
  0    You cannot cause it to happen.
  0    It depends absolutely on someone else doing something.
  0    It is extremely unlikely.
  0    It occurs only after you're dead.

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Traditional health education planning models have to be reconsidered when we
apply them to these circumstances.

We usually think of public education in mass terms. But, the really important
people are the 12,000 or so families who will be in a position to agree to organ
donation next year (2). Campaigning to reach all 250 million Americans is not cost
effective when we understand that currently half the families who actually could
donate aren't even asked (3).

Public education has to fit within a total effort to raise the supply of organs. That
means a concentration on the supportive and maintenance role of public education
in allocating a community's scarce resources. A 94 percent awareness'rate means
the job is maintenance. Education should support the real circumstance of .organ
donation. That occurs in a hospital waiting room when one family hears one
question. That's when we can tell if our education is working. If they've heard of
organ donation, talked about it, and know it's what their loved one would have
wanted, we've been successful.

The goal of public education is "To maintain a level of public awareness of organ
and tissue donation which will favorably dispose families toward donation if they
are ever asked to grant permission." Many things have to fall into place in order
for organs to be donated. Public education can help the process be successful, but
it can't go beyond that. We can't expect families, at that particular time in their
lives, to seek the donation opportunity. That's why public education can't increase
organ donation; it can only help the process be successful once the process has
begun. Until that process begins a-lot more frequently, public education will
remain a secondary challenge. This does not mean that public education is
unimportant. It is, and we're still going to do it. We need to maintain the
excellent level of awareness that we've reached.

The time of organ donation opportunity is an emotion-laden, stressful, personal and
private part of a family's life. We want our education to have predisposed the
family toward agreement. We don't need to give them all the facts or details. We
just need to have created the right atmosphere in their minds so that it seems more
natural to say yes. To do that we hope they have a sense that:

o    Transplantation is "good".
o    Organ donation is the "right" thing to do.
0   When a person dies "senselessly," the only "good" possible is organ
    donation.

o   The person who died, a "good" person, would have wanted his or her
   family to do the "right" thing.

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If those ideas are the sense of the situation in.the family's mind, the process will
be successful. Our planning should concentrate on what creates that sense, what
reinforces it, and what would work against it. Those questions are the foundation
of a new approach to public education.

Cur educational framework should be built on a few basic, easily assimilated,
simple themes, frequently repeated. We should skip the details; they are too
negative, too easily misunderstood-and too. complicated. We want people to feel
that organ donation is good, the "moral" thing to do.

Dur mission is not to raise the educational level of the American people. Our
mission is to increase the number of organs donated in this country so there can be
more transplants. Public education is an important part of that. This Surgeon
General's workshop gives us an opportunity to reflect on our successes and our
challenges. It should be a catalyst for us to re-examine our thinking, evaluate our
assumptions, clarify our intentions and renew our commitment to support our
mission with effective public education programs,

Current State of the Art

A 1987 Gallup Poll conducted for the Dow Chemical Company, reported that 94
percent of all Americans were aware of transplantation and organ donation (4). In
general, the series of public opinion surveys conducted during the 1980s have
consistently reported very high awareness (5). The latest poll, taken in 1991 for
the Partnership for Organ Donation, reported that 84 percent of Americans actually
support the donation of organs for transplantation (6).

In spite of that high degree of public awareness, the transplant community
continues to face a severe shortage in donated organs. In April 1991, the Institute
of Medicine released a study of the End Stage Renal Disease Program called for by
Congress. In that study, the IOM reports, "Kidney transplantation...is the preferred
treatment for a majority of ESRD patients...The major factor limiting access to
transplantation is the shortage of available kidneys" (7).

Information revealed in the various polls illustrates the continuing problem:

0  "The population is aware of transplantation . . .People remain supportive of
transplantation, yet ambivalent about organ donation" (Battelle, 1987)(8)

0 "84% of those aware of organ transplants have heard about organ donor
cards" (Gallup, 1986)(g); "20% of those aware have completed an organ
donor card" (Gallup, 1987)( `I 0)

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"92% of those aware of organ transplants say they heard about them on
TV" (Gallup, 1985)( 11)

"Surveys indicate that the public's awareness of transplantation is high, but
its enthusiasm for donation is lower...". (IOM,, 1991 )(12)

"67% of those aware of organ transplants see an organ donor as loving,
generous person who cares about others. Even among respondents not
likely to donate their own organs over half (53%) picture this type of
person" (Gallup, 1985)(13)

"If the family knew of their loved one's wishes, 94% said they would honor
the request; if the family members did not- know, only 54% wquld donate
the relative's organs" (Gallup, 199 1 )( 14)

"73% said they would likely want their organs donated upon death. 76% of
whites and 45% of blacks" (Gallup, 1991)(15)

These polls describe the public's perception of the relationship it has with the
transplant community. We have done a good job of creating and sustaining
awareness. However, that awareness hasn't translated into more donation. The
IOM'points out the inconsistency between polls showing that the public is aware
and the worsening shortage, I'.., the number of all kidney transplants grew an
average of 5.5% per year from 1974 through 1978, then at more than 10%
annually from 1978 to 1986. Since 1986, however, no growth has occurred, and
the numbers have actually decreased slightly" (16).

It is interesting that the trend stopped in 1990. The United Network for Organ
Sharing's data reports that the number of transplants actually increased in 1990
over 1989 by 15 percent. That rate was made possible by an increase in cadaver
donors of 11 percent. There were 4,`357 cadaver donors in 1990; that's up from
3,923 in 1989 (17). It's too soon to tell whether that indicates an upward trend in
dealing with the shortage or a one-time uptick.

What is clear is that the number of organs donated does not begin to meet the
need for transplants. Those waiting for a transplant has grown to over 23,000
(18). It is also clear that the number of cadaver donors is not anywhere near the
number of medically suitable potential donors. The IOM reports, "Actual acquisition
may be one-third to one-half the potential pool" (I 9).

Howard Nathan and associates conducted a study of the donor pool in
Pennsylvania and surmised that half of the potential donors were never considered

94


for donation. He places the size of the potential donor pool at between 38.3 and
55.2 donors per million population per year. If.those donations were realized, there
could be twice as many donors and more than twice as many transplants (20).

Public education programs exist throughout the United States sponsored by
national, regional, and local organizations. Every conceivable tactic is being tried
by some organization somewhere. The sponsors of the messages may be totally
committed to organ donor education or only marginally interested. The scope of
the programs may be national or local, and. their content may be coordinated within
an area or not. It isn't possible to calculate the,dollars being spent or the time
being invested in these programs.

Edith Oberley and associates undertook a study of the educational programs
underway in 1991 and reported; "Programs continue to be local and uncoordinated
. . ..TV is underused and often badly targeted....few programs are minority
targeted.. . . no easily identified message.. ..lack of consistency.. . .language levels too
high." She describes one unfortunate common denominator of many of the
programs: "... public education has often been an ,afterthought as transplant related
organizations have focused on professional education and administrative concerns"
(21).

The. major national organizations all appear to be planning an increase in their
public education programming. UNOS is working with the J. Walter Thompson
advertising firm. The Association of Organ Procurement Organizations is working
with a design firm on graphic representations of the need for organ donation.
Many other programs, such as the Dow'/NAACP and the National Kidney
Foundation's New Year's Resolution Campaign, are ongoing. Most other national
members of the transplant community are committed to public education as well.

Public education requires a large investment of scarce resources. Organizations
can benefit from exchanging ideas before developing expensive programs.
Programs are more effective when they are planned and developed in a coordinated
fashion and supported by the shared experience and knowledge of all those
interested. Sharing would also facilitate clarity and consistency in messages which
are currently diverse.

The UNOS Board of Directors approved a resolution that UNOS "participate in the
formation of a multi-member coalition to coordinate national efforts in order to
improve organ donation throughout the United States" (22). UNOS bases its
concept on its current clearinghouse which compiles information on past and
present educational efforts. This expansion would not replace the current planning
processes and needs of the large and diverse group of member organizations. To

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be successful, the consortium would not compete with its members for funds or
public recognition, nor would it seek funding or conduct its own programs. It
would serve as a clearinghouse for future programs in public education.

Historical Analysis and Evaluation of Organ Donation
        Education Programs

Transplantation began to make headlines in 1954 with the exciting news that a
kidney had been successfully transplanted between two individuals (23). The
identical twin transplants were one of the scientific breakthroughs of the 50s. The
Reader's Guide to Periodical Literature reports that 19 articles on the subject of
transplantation appeared in 1954 alone (24). Twenty-five more articles appeared
in the next 2 years (25). Typical was an article in -9
                         entitled
"Spare Parts for the Human Body" (26). Identical twin transplants, followed by
closely related living donors, were the only procedures commonly done before
1964.

Interest in transplantation grew as the operations became more common,
especially when they began to involve non-living donors. The Reader's Guide
shows the average number of articles per year increased from 13 during the late
50s to 34 in the 60s (27). This coincided with the launch of a campaign to pass
the Uniform Anatomical Gift Act (UAGA) in the late 60s. Medical and lay
organizations enlisted public support in getting the measure adopted by all 50
States. That was accomplished by 1969 following an all-time high in magazine,
articles of 85 in 1968 (28).       :

One of the most publicized events in the history of transplantation was the first
heart transplant in 1967 (29). Extensive media coverage from Capetown, South
Africa was a major landmark in making the public aware of organ donation and
transplantation as a clinical therapy. This boosted the early efforts to gain public
support through donor cards which were made possible by the UAGA.

The National Kidney Foundation, the American Medical Association and other
groups began a major effort to distribute donor cards in the early 1970s. Signing a
donor card became a theme of most efforts to reach the public about organ
donation. Thousands of cards were distributed at health fairs, in grocery bags, in
direct mail pieces and as part of fund raising campaigns. They became the focus
of television public service announcements, posters, billboards and even stickers
saying "I Love You... With All My Kidney."

Another landmark was the inclusion of transplantation and dialysis in the Medicare
program in 1972. This coverage stimulated a .phenomenal growth in the number of
people waiting for a transplant, When the program began in 1973, 15,000

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Americans were on dialysis. Today that number exceeds 115,000. The demand
for transplantation and the mechanism for paying much of its costs grew out of
the one sentence addition to PL 92-603 (30).

Another catalyst for public awareness of transplantation was television star Gary
Coleman. For several seasons one of NBC's most popular shows was Diff'rent
Strokes, starring the 4' 9" Coleman.  Much media attention was focused on the
fact that Coleman had received two kidney transplants by the time his show
entered syndication (31). Coleman discussed his transplants and the need for
organ donation on talk shows and in interviews.. He became the spokesman for
The National Kidney Foundation and appeared in TV and print ads for several
years.

The pace of transplantation and organ donation education picked up in the 1980s.
More organs were being transplanted and the need for donation was highlighted
throughout the decade by on-going media events and news coverage. President
Reagan appealed on television for donors for children awaiting liver transplants
(32). Organ donation was in the news, and messages about it were disseminated
by many groups. The National Newspaper Index shows a steady increase in the
annual number of articles in major papers from two in 1981 to 37 in 1990 (33).

The Federal Task Force on Organ Transplantation, created by the Transplant Act of
1984, specifically reviewed public education initiatives, concluding: "Programs
were local, uncoordinated, inconsistent and redundant. Programs lacked specific
goals and were not evaluated...Not targeted to minorities...if effective, the ethnic
donor profile would more closely resemble the pool of recipients...TV use was
uncoordinated and uneven in quality" (34).

Between 1987 and 1989, the American Council on Transplantation analyzed
current public education programs under a contract with the Division of Organ
Transplantation. Some of its analyses were: "Fears about donating are not
adequately addressed.. . Programs do not convey the message that transplants
work. . . Almost 50 percent of programs do not have an evaluation component. . .
Programs do not meet the specific needs of defined audiences... Programs are
generally targeted to the `general public!... Programs use the same message for
several different audiences" (35).

The IOM Study reflects on public attention in the 80s with these conclusions:
"The public's willingness to donate organs may be influenced by the newspaper
and television publicity that transplantation receives. There may be negative effect
of adverse publicity, such as that about anencephalic donation or cross-species
transplants. The news value of organ transplantation may also be of limited or
declining interest to newspapers and television. These dramatic procedures
received substantial television coverage from 1983 through 1986, as public

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attention focused on the plight of a small number of individuals, often children...
Data developed `by the IOM staff suggest that the novelty of organ transplantation
may have worn off and that the story may be less newsworthy" (36).

Those three authoritative studies present a discouraging picture of the efficacy of
public education in the 80s. This is especially true since spending on. public
campaigns increased during the same period.

During the 1980s and early 9Os, there were many events and projects designed to
reach the public with a message about organ donation. They illustrate the best of
intentions and uneven results. The plans were mostly made in isolation and carried
out with insufficient resources. Groups did all they could, but success was not
reflected in the rate of donation. It might be useful to review public education at a
time when the field was rapidly changing. These are not an all inclusive history of
the decade, but a glimpse of how we tried to reach people because we thought
they should support our cause.

One of the first events of the decade was the birth of National Organ and Tissue
Donation Awareness Week (37). It began as a single day in 1983 when The
National Kidney Foundation brought its Honorary Spokesman, comedian Pat
Paulsen, to Washington, D.C. to roam the halls of Congress in search of dignitaries
to sign donor cards. Paulsen, known as a perennial Presidential candidate, secured
the signatures of several Congressmen and Senators. Modest press coverage
resulted, and support was received by the United Steelworkers of America and
other groups.

The project was repeated the next year with similar results. Press coverage
increased when photos were sent to the Congressmen's home town papers. The
following year's ceremony was organized through the American Council on
Transplantation and supported by the Dow Chemical Company and their public
relations firm (38). Its highlight was'the signing of a donor card by Vice President
George Bush. The Vice President's participation caused a noticeable increase in
publicity as did the services of a professional public relations firm.

The day was expanded into a week and coordinated by ACT for the next several
years. Events were sponsored in Washington and included receptions on Capitol
Hill and ceremonies featuring recipients and representatives of organizations
involved in transplantation. ACT prepared kits with ideas for local activities, which
were sold to groups around the country. Many local activities were conducted by
ACT member organizations and others. The National Week has decreased in
emphasis over the past few years. However, many community projects are still
carried out by OPOs and other local groups.

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The formation of the ACT was a significant development. ACT grew out of
meetings called by Surgeon Genera! C. Everett Koop to determine better means of
coordinating activities within the transplant community (39). It was given a
substantial boost with seed money from the .Dow Chemical Company that
facilitated its organization and initial programs (40'). ACT described its mission as
follows:

0   To `motivate the public to donate organs and tissues for
   transplantation;
0   To improve donor identification and referral to organ/tissue recovery
    programs;
0   To promote recovery and use of multiple organs and tissues from
    available donors: and
a   To promote equitable distribution of organs and tissues.

"To these ends, the Council provides the ONLY national public policy forum to
address and seek consensus on social, psychological, ethical and economic issues
involved in organ/tissue recovery and transplantation. This national forum provides
the opportunity for all individuals and organizations concerned with organ and
tissue transplantation to have an active voice in the discussion and formulation of
public policy regarding transplantation" (41).

ACT's early funding and the support of influential members of the transplant
community gave it many opportunities to become a focal point in the education
effort. It held workshops, produced materials, and facilitated exchange of
information at its meetings. It received a government grant to research and
compile information on educational programming. The result was publication of
the Source Book, a reference guide to educational efforts around the country (42).
ACT remained in operation throughout the decade, although it was hampered in
later years by inadequate financing. It closed its doors early in 1990.

One personal event made national news when in 1986, United States Senator Jake
Garn of Utah donated one of his kidneys to his daughter Susan (43). Senator Garn,
the only member of Congress to ride in the space shuttle, was widely recognized
for his donation and has served in a number of honorary capacities since the
transplant.

A landmark in the public policy history of transplantation was the passage of The
Transplant Act of 1984 (44), sponsored by Congressman (now Senator) Al Gore of
Tennessee. One stimulus for the law was publicity generated by a physician's plan
to set up a kidney brokerage business which would have arranged the buying and
selling of kidneys from willing live donors. This received considerable, and usually
negative, national press attention, and focused attention on the provision of the
Act that would outlaw sale of organs. The Transplant Act also called for the

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establishment of a national organ procurement and transplant network (OPTN) to
ensure effective organ sharing and the convening of a Task Force to study
transplant issues and make recommendations (45).

The organization chosen as the OPTN was the United N.etwork for Organ Sharing
(UNOS) headquartered in Richmond, Virginia. UNOS undertook the substantial
challenge of devising national sharing policies and procedures and involved the
entire transplant community in its deliberations. UNOS hasa strong interest in
education, including public education, and serves as a major information resource
for the media, the public, and the members of the transplant community. It has
established a clearinghouse which includes information on national and local
educational programs.

UNOS joined a number of other organizations interested in organ donation and
public education. The American Association of Critical Care Nurses/NKF resource
guide published in 1990 lists 30 different national organizations with roles in
educating the public about organ and tissue donation (46).

Since the close of the 8Os, public awareness activities have continued with some
notable achievements. Among them are the award of a Nobel Prize to two
American pioneers in the field of transplantation, Dr. Joseph Murray of Boston and
Dr. E. Donna11 Thomas of Seattle (47). The U.S. Transplant Games were held in
Indianapolis in October 1990 and featured athletic competition by 400 recipients of
vital organ transplants (48). A White House reception was hosted by First Lady
Barbara Bush in April 1991 to salute the entire transplant. community and its work
(49). And this Surgeon General's Workshop brings focus to the responsibility we
have to search for new and better solutions.

Traditional Primary Sources of Public Education
      in Organ Donation

For most people, transplantation is not a part of their own personal world. It is a
rather exotic medical treatment involving other people. The media is the basic
source of experience with transplantation and organ donation for the majority of
Americans.

News coverage of transplantation has been consistently available when
developments warranted. When the, story was dramatic, like appeals for children
needing liver transplants, the coverage was extensive. The first heart transplant
(5O), the conception of a child to be a bone marrow donor (51), the donation of a
baboon heart .(52), the living donation of a part of a liver (53), the donation of a
kidney by a United States Senator all were reported (54). Also, bad publicity can
be extensive. When a physician wants to sell kidneys (55); when foreign nationals
are transplanted ahead of Americans (56); when blacks wait twice as long for a

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transplant, it's news (57). Table 1 shows that throughout the 198Os, coverage in
the country's leading newspapers was growing and fairly frequent (56).

The National Kidney Foundation's clipping service estimates that over 50
newspaper articles on organ donation appear each week in the United States (59).
Table 2 shows the number of general interest magazine.articles published annually
in recent years (60). Local events, from dedication of new hospital facilities to
mayors signing donor cards, make. the news. Individual recipients also stimulate
coverage, from Michelle Kline, a transplant recipient who was Miss Pennsylvania,
to the youngest, or smallest, or thousandth recjpient.

Television is the most frequently recommended medium for public awareness or
education messages, and was so cited by the Federal Task Force on
Transplantation, the IOM Study; the Oberley study, and the ACT Report (61). In
today's society, television is a dominant force in determining public sentiment. It
also is a highly structured business and contrary to the impression of many people,
is under no obligation to run our public service announcements or devote time to
our cause. It is required to broadcast "in the public interest" but it has a lot of
latitude in defining that term. That means, organ donation must compete with
every other good cause for media attention,

Early in 1991, several network TV series inaccurately depicted the organ donation
and'transplantation process. They addressed some of the worst fears and barriers
to donation the polls have identified (62). On L.A. Law, a person needed a kidney
transplant and the lawyers arranged to buy the organ from a woman who agreed
to claim to be a relative (63). On Knot's Landing, a main character needed a liver
transplant and a relative bribed the hospital staff to give him a donated liver rather
than to the first recipient in line, `who consequently died (64). The most outlandish
story was on a segment of Law and Order, where a surgeon was paid a lot of
money to kidnap a person and remove his kidney, leaving him to die, and then
transplanting the organ into a rich patient (65). Even the sitcom Doogie Howser,
M.D., had a segment in which the decision about donating organs was presented
in a rather coercive way (66).

More people saw these four shows than any of the television coverage of the
shortage of donors. There were many angry phone calls and letters after the
shows aired. Still, the concept of organ donation was put before millions of
Americans. Is this publicity necessarily bad? It's beyond the scope of this paper
to explore that question. However, these fictional portrayals may have started
more family discussions than all the public service announcements broadcast this
year.

Public service announcements (PSAs) are an integral part of a total media
campaign. They are used by local stations, cable systems, cable channels and the

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broadcast networks. They are the mainstay of charities and causes ana are
everyone's first thought in educating the public. Studies show they can be
effective (67).

A 1991 study, "Measuring Advertising Effectiveness", was conducted by the
Advertising Research Foundation in cooperation with the Ad Council and the
American Cancer Society (ACS) (68). The study took 2 years and cost over $1
million. It measured the public impact'of one PSA in four markets: Eau Claire,
Wisconsin; Marion, Ohio; Grand Junction, Colorado; and Pittsfield, Massachusetts.
The PSA was devoted to awareness of colon cancer, and it measured response by
assessing actions related to consulting a physician and getting tested. The study
found, Y.. the use of public service advertising alone not only increased awareness,
but also reinforced people's beliefs, fostered their intent to act and inspired
potentially life-saving action" (69).

The study used only one ACS TV spot which was repeated frequently. An
assessment was made of the number of people who took some action after seeing
it. It utilized purchased air time in which the PSAs were substituted for regular
commercials. This allowed the study to target the audience it wanted to reach.
That time used came to over $25 million. The campaign was successful in the
opinion of the study's authors. A large number of people, especially men whom
they had specifically targeted, saw their doctor and were tested.

The study proved that a public service announcement used consistently and
frequently for a long period can provoke action leading to better health. However,
the methodology was totally u.nrepresentative of a typical public service campaign.
Thus, the results are terribly misleading. In the real world, the effectiveness of this
study could never be duplicated.

The study states, "To control media placement, they relied on three national
advertisers...to donate some of their paid advertising time for running this
campaign." That simply is not going to occur for us on any meaningful scale. The
study continues ". . . a concerted effort was made to target men by placing more
PSAs than usual in sports, prime-time and early news programming" (70). Such
accessibility is not possible when PSAs compete for donated air time. Organ
donation might also reach more men if corporations such as Proctor & Gamble,
Gillette and General Motors were to purchase $25 million worth of time for it.
That is not realistic.

The study summarizes, "If the major goal of a public service advertising campaign
is to build awareness, this study showed that an average level of advertising can
accomplish this goal. It also showed that consistency and targeted media
placement are important in increasing awareness. The longer a public service

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campaign runs, the more awareness can be expected to increase. The more
targeted the media placement, the more awareness will increase among the target
audience" (71).

The main premise of the study is stated as follows,, "...consistency and targeted
media placement are critical in maximizing the effectiveness of public service
advertising." The study proves that statement. However, we cannot duplicate the
experience reported `in that study.- We have to deal with the real world of donated
TV time (72).

The effectiveness of a public service campaign can be increased by the
participation of the Ad Council (73). This coordinating group is very important in
securing donated creative services from professionals and critical in `getting
placement from the networks and, to a lesser extent, local stations. The Ad
Council operates today under new rules, adopting causes rather than specific
organizations. It helps coalitions develop funding sources and secure the best
creative talent (74). The Ad Council seal confirms that a spot has been
competently done, thoroughly researched, and deserves premium placement.

The study by the Advertising Research Council describes the typical Ad Council
Project: "In 1989, total donated media support for the more than 30 Ad Council
campaigns ranged from a low of $6 million to a high of $100 million. Fully three-
quarters of these campaigns fell within the $6 to $30 million range, which means
that the value of donated media averaged approximately $18.2 million a year for
each campaign" (75).

William Clotworthy, former Public Service Director for the NBC Television Network,
devotes 50 percent of his available time to Ad Council or Media Partnership (the
recent campaign on drug abuse), 10 percent to NBC's own public service program,
and the remaining 40 percent to all other causes (76). Harvey Dzodin, Vice
President of Commercial Clearance for the ABC Television Network, reports that
only Ad Council or Media Partnership spots go over the network in non-coverable
(local stations can't substitute local spots or commercials) time (77). These are
two of the "gatekeepers" who actually decide what television does with our
messages.

Another common practice is to use celebrities to convey messages. A large
number of celebrities have been involved in reaching the public about organ
donation, including Bill Cosby, Delta Burke, Whoopie Goldberg, Gary Coleman, Pat
Paulsen, Pernell Roberts, Bea Arthur, Carl Lewis, Sugar Ray Leonard, and others.
The National Kidney Foundation conducted a nationwide mail survey of 1100
television public service directors in April 1991 (284 responses were tallied). They
were asked to rate the importance of various factors in devoting air time to a
campaign. Only 33 percent rated the appearance of a national celebrity very

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important in their decision making;,27 percent rated it not important. In fact, local
celebrities rated higher with 41 percent saying they were very important and 18
percent saying they were not important (see figure 8) (78). Celebrities do call
attention to a cause or an issue, however they increase the cost of a campaign
and the production requirements.

Much effective communication happens.person-to-person; Such avenues are
typically part of a balanced educational campaign. By their nature, they are local
activities and are the responsibility of local transplant community members. These
tactics run the gamut from health fairs and donor signing events to a concerted
effort to speak to every service club in the area once a year. Service clubs are
frequently good prospects for co-sponsorship of a donor card campaign. The Lions
Clubs have led the way for many years with their commitment to the Eye Bank
program. National organizations frequently develop materials which can be used
by local representatives in meeting the public and disseminating information.
Religious institutions, places of worship, community organizations and schools ail
offer opportunities for contact with the public. They are places where Americans
get information upon which they build their attitudes.

Another important venue for dissemination of information is drivers' license
bureaus (79). Most states allow a notation on drivers' licenses that the holder
wishes to donate organs and tissues.  Some have an actual donor card on the
license. When people get or renew a license, there is a major opportunity for
education. Only a few States require that the question about organ donation be
asked and answered. Most leave it up to the individuals involved to notice that the
license can be a donor card. In several areas, organizations have made a major
push to educate license examination personnel and to create a display of
information in each station. In Maine a major campaign has been launched with
the Lions Clubs and the National Kidney Foundation of Maine. The District of
Columbia Organ Donation Program also had an excellent relationship with drivers'
license examiners. They have a presence in every drivers' license bureau which
gets the attention of everyone who comes in.

The opportunity is especially compelling when a young person gets their first
license. If they say yes the first time, it may become a life-long habit. it is also
significant that people under 18, as first-time drivers frequently are, need a
parent's signature on the donor card. That creates a family discussion.

An important aspect of translating opportunities for reaching people into actual
changes in attitude, is to provide a mechanism for them to get further information
or have questions answered. TV spots are frequently required to carry a phone
number for further information. Posters and other signs, direct mail pieces and

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displays can feature a number or an opportunity for follow-up. Within a
community there are-usually several.sources of such information. Agreement
among the organizations may make.the access consistent and reliable.

Attitudes and Barriers Which Impact on
Organ Donation Public Education

The transplant community has identified attitudes the public may have which
negatively impact their support for donating organs. Typical barriers are:

0    Distrust of the medical care system

0    Discomfort with the topic of death

o    Discomfort with the topic of organ donation (80).

The community is also familiar with the characteristics of those who are likely, and
unlikely, to donate. Oberley reviews the subject: "Research has generated a very
clear and consistent demographic picture of persons most likely to express
willingness to donate their organs after death. Without exception, studies have
described the likely donor as white, younger rather than older, having more
education and enjoying a relatively greater yearly income (Battelle, 1985;
Gallup,1 987; Perryman, 1990). Conversely, the same studies have described
those least likely to express willingness to donate as being black, over 45-55 years
of age, with low income and little education" (81).

One of the comments from the Surgeon General's Advisory Workshop Committee
sums up another major barrier to successful organ donation: "A primary reason for
refusing to donate is, `we've never discussed it and we don't want to think about
it now'" (82).

Another barrier is the concept of "brain death" which the general public does not
understand. Many in the transpiant field recommend abandoning the term,
choosing to talk about death without the qualifier. It is a confusing term. A 1985
Gallup Poll showed: "Less than half (45 percent) believe correctly that a person
must only be considered clinically brain dead in order to have that person's organs
donated" (83).

Another comment from the Workshop Advisory Committee: "A major problem in
promoting organ donation is the fact that it deals with the subject of death and our
society does not discuss death" (84).

Barriers to organ donation include the disparity between blacks and whites in
awareness and willingness to donate. In 1986,. Jeff Prottas stated, "On each

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attitude question Black Americans are less supportive and aware of organ donation
than are Whites." Prottas continues, "In our society there is a strong connection
between a person's race and the . . . . education he or she has received. For this
reason, it is possible that the strong effect of race on attitudes may be misleading;
it may be that it is really a person's educational level that determines attitudes not
his race." However, Prottas goes on to state, "...in each case the effect of the
race variable is stronger than that of the education variable...These findings imply
that if we compared a group of people with the same amount of education we
would still find significant differences'by race" (85).

The Institute of Medicine summarizes the problem:  "Black individuals account for
28 percent of the incident ESRD patient population, even though they represent
only 12 percent of the U.S. population; their incidence of renal failure is nearly four
times that of whites. Regarding kidney transplantation, black ESRD patients
represent about 30 percent of those on waiting lists but wait nearly twice as long
to obtain a kidney as do whites; they receive over 22 percent of cadaver
transplants and 12 percent of Living Related .Donor transplants. They donate
slightly over 8 percent of cadaver organs" (86).

All these barriers work against the acceptance of our educational messages. They
are attitudes we need to change and fears we need to address. It is a formidable
task to create a single educational campaign which deals successfully with all
these factors. The basic response we have supported has been the concept of
"altruism," that organ donation is "right" and that people should support organ
donation and give permission when.asked. We have concentrated on message
content, believing that the public ought to pay attention because.it is important.
However, organ donation is not very important to the public. Television public
service directors are excellent barometers of public issues in their community. In
the NKF survey, they were asked to rate the importance of organ donation relative
to the issues (figure 5). The largest response was "5". AIDS came in number one,

Organ donation also is not as visible as we think and certainly not as visible as we
hope it can become. Seventy-five percent of the public service directors rated the
visibility of organ donation in their communities a "5" or below (figure 4) on a scale
of one to 10 (87).

-The NKF conducted a more intensive telephone survey in 14 communities seeking
the opinion of the public service directors, the local OPOs, and the local NKF
Affiliates. In that study (figure 1), 86 percent of OPOs thought organ donation
was greater than "5", as did 60 percent of NKF Affiliates, but only 34 percent of
the public service directors thought it was greater than "5" (88).

Public service directors have a good sense of the importance and visibility of public
issues in their community. We must compete for their attention. A study by

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Needham, Porter, Novelli in 1985 for the National Heart, Lung and Blood Institute
indicated that public service directors receive 15 public service spots a day. They
have 175 different spots in their rotation at all times (89).

We cannot control access, we can only compete effectively for it. One of the
means of competing most effectively is to know where. the control actually is and
how best to influence it. That rests with the group referred to as "gatekeepers".

"Gatekeepers" -for Public Education Campaigns

"Gatekeepers" are people who control access to the mediums through which we
seek to reach the public. Every medium has its'gatekeepers. Every group of
gatekeepers has a set of rules and regulations for access. They also have ideas
and preconceptions about what interests and benefits their public.

Schools have superintendents and boards of education; newspapers have editors;
service clubs have program chairmen; health fairs have committees; drivers' license
bureaus have supervisors and television has public service directors. All of these
people are in positions to decide whether or not our messages are used. We
cannot reach an audience without going through these people. Yet, organizations
which have a mission of educating the public usually do not find out what these
people think before they create their campaigns. For instance, not one
organization involved in producing television public service spots about organ
donation is a member of the National Broadcast Association for Community Affairs
(90).

Since television is so vital to the organ donation public education effort, the results
of the NKF survey of television station public service directors (mentioned earlier)
can be informative. In addition to specific questions, the respondents were also
asked for advice (appendix 1) and several responded on the need to listen to them,
to public service directors. For examp.le:

0   "Get to know the public service director and station policies on PSA
   placement."
o   "Make a personal contact with the Program Director and person
   responsible for PSAs and get to know them. Find out what they want
   and need and work with them."
0   "MORE organizations should do research so they provide airable
   spots!!"(91)

The most important survey result was the overwhelming sentiment that television
campaigns should be local: 92 percent of the public service directors responding
said the "local angle" of a spot was the most important, or very important factor in
their decision to allocate air time. Only 18 percent of the respondents thought a

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nationally produced spot was the most important, or very important factor in their
decisions about air time (figure 8) (92).

vllhen evaluating available spots, respondent& said, they base their decisions on the
local aspects of the campaign and the PSA itself. It also helps to have the spots
delivered by a local representative: 54 percent of the respondents were more likely
to use a spot if it was distributed- by hand or by a local representative of the
organization. Only 19 percent said they were more likely tc use a spot delivered
by mail (figure 6). Some of the comments make this point very strongly:

0    "Our license and mission is to serve our local audience in terms that
    relate to their lives and needs."

0    "Testimonials from recognizable, hopefully local, recipients of
   transplants would play well here."
0    "Local angle and local contact numbers are very important to my
    station."

o    "Try to localize.. . . This way the frequency of air time increases." (93)

The results of this survey are entirely consistent with the survey of 30 public
service directors done in 1985 by Needham, Porter, Novelli which found: "When
participants were asked to specify what criteria they use in deciding whether or
not to air a PSA, comments by nearly three-quarters of the overall sample related
to local impact." The study said that play on a station can be increased by:
"producing a greater number of locally oriented spots containing a reference to
where people can get more information, sending spots with local tags...." In
general, the 1985 survey concludes: "Seven out of ten respondents say that local
contact influences them either to `a moderate or great degree" (94).

National organizations may place too great an emphasis on network television's
participation in campaigns. The networks have their own gatekeepers, rules, and
practices which work to the disadvantage of issues like organ donation. For
example, local stations can "cover" a network public service spot with a local spot
or a local commercial (95).

There are spots which are placed in "non-coverable" slots, broadcast over every
station on the network. However, access to those slots is extremely limited. ABC
network limits such spots to Media Partnership or Ad Council campaigns, and use
10 to 15 each week. All others must compete for the 20 to 30 slots available, all
of which are "coverable" (96). It is possible for local stations to pick up network
spots. They can use them as they are broadcast, or get them "off line" from a
network feed of currently in-use spots. However, the survey showed that 83

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percent of focal public service directors ~ "seldom" or "never" pick up network
spots, and only 3 percent of major market public service directors "frequently" pick
up network spots (figure .3) (97).

Ti3ese results clearly suggest what any cause-based group must do to reach
intended audiences. The gatekeepers.are in charge. Getting to know them and
working with them is vital. The best message in the world, with the best content
and the best production, will be received only if the gatekeepers allow it,

        National and Local
Public Education Campaigns on Organ Donation

The national organizations which produce public education campaigns on organ
donation must maintain a spirit of cooperation. An exchange of information on
plans and campaigns should benefit each organization without compromising any
group's ability to meet their own internal needs. For instance, each organization
will have a unique set of needs in addition to the goal of increasing organ donation.
Some of those needs are:

0  to create public awareness of the organization and its value to the
    community;
. .o    to inspire public support, including financial support;
0    to establish a programming presence, so the public understands what
    funds accomplish through the organization;
0   to inspire and motivate the organization's own volunteer corps, or
    prominent supporters;
0    to use resources available to it; such as an offer of participation from
    a celebrity;
0    to demonstrate an ability to produce materials of high quality which
    impress volunteers and supporters.

Secondary goals (after the primary goal of increasing organ donation) are perfectly
legitimate and often complement the mission of the education campaign. It is
impossible for an organization to ignore all of these factors in planning a campaign.
The problem arises when these things create pressure on the campaign, which may
result in higher costs, production problems, or a lack of clarity in the message.
This can compromise effectiveness of a campaign. However, when these needs
are acknowledged and dealt with honestly, the results of a campaign can still be
good.

Another common problem in campaign creation is the tendency to over-produce
materials, especially TV spots. High quality does not necessarily mean expensive
or glitzy. When creativity is allowed to charge ahead unrestrained, production can
get out of hand very rapidly. Four color printing, glossy paper, celebrity studded

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TV spots, elaborate sets, and fancy video graphics, all make things impressive.
However, the real utility of these tactics must be measured against the goal.

Again, our advice on television comes from the public service directors who were
asked to rate factors in the effectiveness of TV spots.. 49 percent said emotion
was most effective. 44 percent said education was most effective. Their
comments advise staying away from the fringes of advertising. Shock was listed
as only 10 percent effective (figure 8). Some of their comments were:

0    "Don't rely on celebrity - - confront the basic issue head-on."
o     "Don't be clever - - remember that PSAs are aired over and over.
    Don't be melodramatic. ..`I

0    "That the announcement be very simple, clear, easy to understand."
0    "Simplicity is best."(98)

One of the principal responsibilities of the national campaign planning process must
be the absolute commitment to accuracy. The television networks demand that
complete justification accompany the script of any TV spot they are asked to run.
All claims have to be substantiated. The networks will reject a spot which cannot
fully explain why it states what it does. This is especially true for the national
campaign which will be implemented locally.

Another ingredient of any campaign is evaluation. In the survey of 14 area OPOs
and NKF Affiliates, the respondents were asked if they routinely evaluated the
effectiveness of their campaigns. 69 `percent of the OPOs said yes. 54 percent of
the NKF Affiliates said yes (figure 2) (99). Evaluation is harder on a national basis.
However, the evaluation that matters most is the rate of organ donation. 1990
results not withstanding, we haven't been doing very well in the past few years.

Consistency is another issue which gets considerable attention from organizations
trying to reach the public about a single issue. 64 percent of the OPOs in the
survey reported that they make an effort to be consistent within their community.
54 percent of NKF Affiliates reported a similar effort (figure 2) (100). Nationally
there is almost no consistency and no formal mechanism at present to strive
toward. Since the evidence presented here suggests that local campaigns are
more utilized (certainly on TV) the need for locally consistent messages is
reinforced.

One of the most repeated criticisms of past efforts in public education on organ
donation is the lack of message targeting (101). This is very hard to remedy.
Mass appeals' can't be segmented by audience under our circumstances. We can't
control our placement on television. Since we rely on free public service time, the
only group we can be sure to target are insomniacs (since late at night is a
common time slot for public service). One mass campaign can't target minorities,

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or women, or young people. If the desire is to specifically target such audiences,
the evidence tells us that it will be necessary to design unique campaigns for them,
and deal with the gatekeepers in a specific way.

Mass campaigns, especially on television, reach very. large numbers. They are
designed to appeal to the population in general. Their audience is the
250,000,OOO people who live in the United States. If that represents 75 to 80
million families, our statistics indicate that less than 1 percent of those families will
be confronted with an actual organ donation situation next year (102). So, 99
percent of the people we are targeting for our mass media campaign will not
directly be in a position to help us meet our goal (increasing the number of
donations).

Allocation of scarce resources is one of the decision making processes the
transplant community goes through every day. No organization has enough
money, time, or volunteers to do everything necessary to dramatically raise the
rate of donation. Therefore, we have to make choices. The types of public
education campaigns we do is one choice. Allocation of resources between public
education and professional education is another. Some of the information
examined in this paper may prove helpful as we face those choices.

Howard Nathan states: "Educational efforts directed toward the general population
with an accent on minority groups are capable of producing a modest increase in
actual donors [emphasis added]. Educational programs aimed at increasing the
organ donor pool should design methods. to identify these individuals (missed
donors) . . . .improvement in donor recognition.. .could be achieved by creating
focused educational programs targeted toward health-care professionals in
hospitals identified with the largest `donor gaps'" (103).

The Institute of Medicine Study also focuses on the dynamic in the hospital when
the actual determination of donation is made. It states: "Cadaver donation
involves a complex process between the attending physicians and nurses caring for
the recently deceased potential donor, the organ procurement professionals and
the family of the deceased. The initial encounter with the family is critical. It is
most effective when made by professionals who show respect to the family and
communicate a sensitivity that acknowledges their grief. However, if the requestor
is uncomfortable, or lacks answers to important questions, the result is often
refusal" (104).

Again, Howard Nathan points out that in Pennsylvania during his study, there were
147 actual donors, 91 refusals and 114 to 215 families who were never asked
(105). If the real determination of success for organ donation education efforts is
in the number of organs donated, the problem is apparent in that statistic.  Polls

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showing general public awareness deal with' a universe; 99 percent of which will
not be in a position to decide about organ donation.

The Institute of Medicine studied only the renal program. However, it reflects the
entire field of transplantation when it states: "The committee wishes to underline
the urgency of increasing the organ donor supply as the central issue in making
kidney transplantation available to increasing numbers of ESRD patients. Public
and professional education, recommended consistently over the years, should be
continued, but working assumptions should be re-examined and efforts possibly re-
focused and the effects on increasing the a.vailability. of organs should be
monitored closely" ( 106).

Conclusions

A review of public education in organ and tissue donation, and the concepts
described in this paper, lead to the following ccnclusions about the transplant
community's need' for an effective relationship with the American public.

1) The goal of public education in organ and tissue donation should be:

To maintain a level of public awareness of organ and
tissue donation which will favorably dispose families
toward donation if they are ever asked to grant
permission.

The elements of the "level of awareness" which will pre-dispose families are a
sense that:

a)
b)
cl

d)

Transplantation is "good".
Organ donation is the "right" thing to do.
When a person dies "senselessly", the only "good"
possible is organ donation.
The person who died, a "good" person, would have
wanted his or her family to do the "right" thing.

The most important factor in predisposing families toward donation is knowledge
that it is what their loved one would have wanted (107). The best source of that
knowledge is a family discussion of organ donation and transplantation.

2) We must realize that organ donation is a unique health education concept.
Some of the factors which make it different are:

a)  It is not something you can do yourself.

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b)  It is not something that benefits you at all.
cl  You cannot cause it to happen.'
d)  It depends absolutely on someone else doing something.
e)  It is extremely uniikely-.
f I  It only occurs after you are dead.

Our educational planning should include these realities.

3) We stiould set much more realistic goals for public education based on the
following ideas:

    a)  In organ donation, public education is a supp.ortive, not a
      primary activity.
    b)  94 percent awareness means the main job is
       maintenance.
    cl  We shouldn't strive for total understanding of the
      concepts because they are too:
       i) complicated
      ii) negative
      iii) easily misinterpreted
    d)  We should stick to basic, easily assimilated, simple
     themes and repeat them without the details.
                                         /
4) We must invest our money and effort carefully, thoughtfully, and honestly. We
shoutd always know why we are doing things and what we expect to accomplish.
To the extent we want to focus solely on increasing organ donation, these
concepts should be considered:.

a)  The resource investment mix between public and
  professional education should be carefully analyzed based
  on the likelihood of positive results.
b)  National television campaigns are very expensive and not
  likely to be cost effective or produce significant results.

5) Local public education campaigns and activities are much more important than
national ones and will bring better results.

al  The vast majority of educational message "gatekeepers"
  are local.
b)  These "gatekeepers" overwhelmingly advocate messages
  that have a local angle and local focus for action.
c)  The national role should concentrate on creating model
  materials and concepts for local adaptation and use.

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    d)  Local campaigns should be broadly based using a
     cooperative.approach among the local transplant groups.
    e)  Consistency within a community is important;
     consistency with the rest of the country is less so.
                                                  .
Television is usually our first thought when we want to reach the nation.
However, the access to national-television is extremely limited. There isn't much
network time, most of that time is committed to a few select issues, and stations
cover national spots `with local ones anyway.. To communicate with the American
people through public service announcements,-we have to concentrate on working
with local TV stations.

6) Public education encompasses a large variety of tactics. It is not limited to
mass media.

a)

b)

cl

d)

Media campaigns should be supported by local
community involvement. TV Public Service Directors
advocate events and always want further information
resourcesto back up spots they play. They even suggest
asking them to co-sponsor events.
Health fairs, donor card signings, speakers bureau, work-
site campaigns, and countless other tactics can be the
most effective means of reaching people.
Cooperation and efforts toward a consistent message are
very important on the local lavel. Organizations can
share the planning and cost.
There should be standard ways for the public to request
further information or contact .with knowledgeable
representatives of organ donation.

Hands-on public contact is time consuming but it reaches people directly and
involves them in thinking or talking about organ donation. Speakers bureaus and
health fairs reach relatively few people yet they cause people to focus on, and
possibly to talk to their family about, organ donation.

7.) We should spend more time realistically evaluating our educational efforts.
Each campaign objective should be examined carefully:

a)  Though the primary goal of education is raising the rate
  of donation, other goals such as the organization's need
  for recognition are complementary and perfectly
   reasonable.
b)  Secondary goals are valid; however, they shouldn't
  predominate.

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Cl  Secondary goals sometimes raise the cost and guide the
  creative process in campaigns..

It is reasonable for an organization to expect .its public image to be enhanced by
effective educational campaigns and its own volunteers `and supporters to be
inspired by its campaigns. However, accomplishing those secondary goals doesn't
mean that the mission of increasing organ donation has been advanced.

8) Donor cards, a long-time tool of public education programs, should continue to
be distributed widely. Though signing a donor card is part of our message to the
public, they are primarily a catalyst for family discussion.

a)  The fact that donor cards are legal documents should be
  de-emphasized. Their use is in awareness, not in
  recovering organs legally.
b)  We should focus on who witnesses. a donor card signing,
  and urge that it be a family member.
cl  Donor cards, or notations on drivers' licenses are very
  important opportunities to reach the public.
i)  We should make drivers license examination
   locations part of our public education
    program.

ii) We should educate young people when they obtain
  their first license.

9) We should realistically analyze the audiences we seek to reach with our
educational messages. Our mission is not to educate the American people. Oui
mission is to increase organ donation. Therefore,

a)  It is reasonable to concentrate first on the people with
  whom we have the greatest chance for success: the
  people most likely to donate.
b)  We want to reach the 12,000 or so families who will
  face, or could face, a decision about organ donation next
  year. We don't know who they are, but thinking .about
  them might help us do a more effective job of education.
cl  The more we know about those 12,000 families,
  including projection about which ones are likely to be
  asked and which ones are likely to say yes, could be very
   valuable.

10) We need to target some audiences even though we know they are less likely
to donate today. This is especially true of African Americans. Their need for

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organs is clear and so is the need for them to donate. But, planning sudh
campaigns must include some special elements:

a)  Campaigns targeted at minority audiences are harder.
                                                             
b)  They are much less cost-effective.
c)  The primarily ,White -leadership of the transplant
  community needs additional. help, advice and
  participation, before it can produce effective targeted
  campaigns.
d)  Adequate resources must be devoted to such a targeted
  campaign. It cannot be a slight variation of some other
  effort. It is worse to do an inadequately planned or   '
  planned or executed campaign than-to do nothing.
e)  The results of targeted campaigns should be evaluated on
   their own criteria.

All educational planning must take into account the special circumstances of the
minority community need for more organ donation.

11) We must focus on realistic expectations. We should be creative, enthusiastic,
optimistic, and persistent, but our sights should be firmly set on what is attainable.

a)

To most people, our issue is a "5". AIDS, drug abuse,
education, the homeless,' jobs, crime are all `more
important to somebody and some are more important-to
everybody. The public can focus on only a few "10's"
and organ donation isn't going to be one.

b)

Networks devote their available public service time first
to the Media Partnership, the Ad Council, their own
"house" campaigns and then to everybody else.

cl

Effectiveness depends totally on utilization and utilization
is most often out of our control. We can target an
audience, but, if we can't control placement, we can't
expect to reach the targets.

d)

We should resist the temptation to buy television time or
recruit someone to buy it for us. A paid campaign would
be extremely expensive, could not be sustained over a
long period of time, and it would destroy our ability to
get free public service time in the future.

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e)  We must educate the "gatekeepers" about whom we
  know very little. They decide what reaches their
   audience.

12) An intensive study of the current donor pool should be undertaken.
Information about today's donors, potential donors, and unrecognized donors can
help us anticipate tomorrow's needs and opportunities.

                                                  
a)  Which families get asked about donation today and
  which do not? -
b)  Which families say yes to donation and which say no?
cl  Of the families not asked, are there some likely to say
  yes and some likely to say no?
d)  Which families are most able to incre.ase the number of
  organs donated? Can we target educational activities at
   them?

13) The next public opinion poll done by the transplant community should examine
the impact of -inaccurate-or bad publicity on public attitudes toward organ
donation. In 1991, organ donation was falsely portrayed in several popular
television series. What really resulted from that?:

a)   Is bad fiction taken for bad fact?
b)  Can even outlandish presentations stimulate discussion
  and interest in organ donation?               

Cl  How can the transplant community use such portrayals,
  seen by millions, as' a catalyst for positive results?
d)  How should we respond when these things happen?

A 1985 Gallup Poll showed that 92 percent of the people who were aware of
transplants heard about them on television. If such dramatizations are going to
occur, it might be possible to turn them to our advantage.

14) A national public education consortium is needed. Exchange of information on
plans and ideas would be very valuable to every organization which invests time
and money in organ donation education. The consortium should be a
clearinghouse created solely for the exchange of information:

a)  It should not conduct its own programs.
b)  It should not raise money.
cl  Its administrative expenses should be shared by the
  member organizations.

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d)  It should concentrate on how to facilitate better
  educational campaigns on the `local level throughout the
  country.
el It should provide a regular forum for discussion of
   member's initiatives.

The UNOS clearinghouse could easily be `expanded to serve as the focal point for
this consortium.

15) The Federal Government should not p1ay.a visible role in the public's
awareness of organ and tissue donation. Thetransplant community understands
and appreciates the vital role played by the government but it may not be
productive to associate the government with organ donation in the public's mind.

a)  Among some, a distrust of the medical establishment is a
  major barrier to accepting organ donation. If we add
  distrust of the government to that equation, the situation
   could be worse.
b)  The government will have a distinct role in furthering
  organ donation education; however, it should be a
  supportive role acting through other organizations.
cl  The visibility of organ donation education should remain
  with the private sector even when actual programs are
  funded by the government.
d)  Any perception that the ,government is monitoring who is
  willing to be a donor, or who is or is not donating is a
  very strong negative;

In this sensitive personal dynamic, the role of the government has to be
circumspect. This is not a criticism of the many ways government facilitates organ
donation. It just has to be careful in' the fragile relationship between organ
donation and the public.

16) Organ donation has always rested on a foundation of pure altruism. The "Gift
of Life" has always been a freely given gift. The continuing shortage, however,
has led some people to begin considering non-traditional approaches. Our
educational campaigns and efforts should not be modified now. However, if we
consider non-traditional approaches, we should evaluate them from a public
reaction perspective.

a)  A study should be undertaken of the public reaction to
  concepts such as financial incentives for donation,
  maintaining a registry of potential donors, requiring a
  decision about organ donation at some point (drivers'

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  licensing or hospital admission) and presumea consenr.
b)  Full debate and discussion should ,be encouraged on all
  these non-traditional approaches before they are tried.
cl  Pilot trials of these approaches should be conducted to
  test their effectiveness and acceptance by the public.
d)  Relevant laws and regulations should be modified so that
  the trials can be conducted thoroughly.
d  Intensive effort should.go into.the public relations
  aspects of each step in this process so that decisions are
  made with'the attitudes of the public as clearly in mind
  as possible.

SUGGESTED RECOMMENDATIONS
FOR TliE SURGEON GENERAL

1) A national consortium of organizations doing organ donation public education
programs should be formed under the auspices of the United Network for Organ
Sharing.

2) The Ad Council should be asked to adopt organ donation as a major campaign.

3) A national television campaign should not be developed unless organ donation
is adopted by the Ad Council and funding is available through its sources.

4) The.Congress should authorize the Department of Health and Human Services
(DHHS) to conduct pilot tests of non-traditional approaches' including financial
incentives.

5) The Division of Organ Transplantation (DOT) should make "seed money" grants
available for the formation of local coordinating groups.

6) The DOT should fund in-depth studies of the public's attitudes toward non-
traditional methods of facilitating organ donation.

7) The DOT should fund demonstration .projects on educational programs targeted
at minority audiences.

8) The DOT should fund an in-depth study of the current donor pool to project
similarities and differences among the four groups of families (asked and said yes,
asked and said no, weren't asked and would have said yes, and weren't asked and
would have said no).

9) DHHS should indicate the special circumstance of organ transplantation, that
donated organs are required before medical treatment is possible, and therefore

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creates a unique `need to include public attitudes in planning government sponsored
medical care initiatives.

10) DHHS should form an inter-agency group to consolidate information on
transplantation and organ donation programs of various government agencies.

11) That inter-agency coordinating group should promote the need for a public
awareness focus in the scientific and pubiic health work being done in
transplantation.

12) The Secretary of DHHS and The Surgeon General should continue their
leadership in regard to this issue and stimulate greater attention to it within the
government.

13) The Surgeon General should sponsor a follow-up workshop in 2 years to
evaluate progress made on implementing the recommendations coming from this
workshop.

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Appendix.1

The National Kidney Foundation, Itic.
Survey of Televisioc "Gatekeepe'rs"
      April 1991

SURVEY CdMMENTS

Question: What advice would you give to organizations planning to produce
television public service announcements on organ donation?

FORMAT

-Generic without time or date. Put all time. lengths (to fill variety of
station formats) on one reel, that is 10, 15, 20, 30, and 60 second
formats. Do variations so several spots can rotate without spot
getting "tired". _

-Supply varying lengths of spots but not several 30 second spots with
different themes.

-Be sure to produce 60 and 20 seconds as well as 30 seconds.

-Often P.S. Directors are limited by how many spots of a certain
length are available in their PSA rotation. You increase your chances
for air time by giving the P.S. Director options.

-At our station there is less competition for air time for PSAs other
than 30 second. Short spots fit better--20, 15, even 10 seconds.

-Guidelines for PSA's from WTXF-FOX 29: We air 10, 20, 30 and 60
second PSAs in accordance with daily availabilities. For consideration:
Send 1" videotape reel accompanied by cover letter, IRS non-profit
tax-exempt number statement, scripts/storyboards, and background
information. Include full name and address of organization and
contact person. WTXF-TV must have this information to process and
to issue monthly performance reports. Don't send slides. Allow for a
g-week processing period. All tapes are screened for content and
technical. If selected, the public service announcement airs for 6-
months or until the specified kill date. A monthly performance report

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will be sent to organization providing contact information. Please enclose a
self-addressed stamped envelope.,

-Offer 1-3 different lengths and make the spot so it will hold the
interest of viewers.

APPROACH

-Keep it simple-provide a call to action for your viewer.' Don't try to
give too much information in :30. More organizations should do
research so they provide airable spots!!

-Include a racial balance, i.e;, it affects all races and socio-economic
backgrounds. There's a concern for lack of minority donors.

-Sensitive subject; personal...some might think talking or "body parts"
too personal. A sensitive subject needing a sensitive approach.

-Spots must be generic, cannot ask for specific donations.

-Make a generic spot with no end date.

-Make good spots but don't try to get too technical as people don't
understand technical side of most things. Also make spots kind of
simple and not too deep.

-Get creative and make sure'you have universal appeal (to all age
groups) or produce different spots aimed at different demographics.
Include local phone number on spot, if available.

-Be creative with your presentation of the message. Be careful to
make the spot "work" in all parts of the country (urban/rural). Make
part of the spot a "call to action" to get the viewer to do something,
or simply to be more aware.

-Be sure to appeal to the minority audience.

-Keep it simple so it can have a long play.. *repetition is your best
promotional weapon when time is needed for people to decide to join
the effort.

-Make sure the spots are well produced and don't use "talking heads",
there is nothing more boring than a spokesperson on camera talking
for several seconds.

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-Offer the' viewer a ,sense of revelation while communicating `the
information! Show. real life sit-uations/happy endings?/not happy
endings? More information needed for general public to get
comfortable with idea.

-Although I indicated that education signals effectiveness, keep in
mind that .education'is only possible when you have the public's
attention. How.? Emotional, shocking, humor, etc.

-Include the following: emotional (touching, tear jerker, cute,
shocking, etc.) music that demands your attention and holds, it, fast
moving - all information .quick and to the point. 30 second spots,are
best.

-I would present it as real and graphic as could be done, along with
someone who is in the public eye.

-I have done a half-hour program on organ donation and am
intellectually convinced myself. I think the BIG problem is that of
describing what DEAD is.. some organs (all?) may be harvested prior
to what people believe DEAD to be! This is a big problem. The organ
donation program really must depend on an enlightened, courageous
and informed person. Even the best of us wince a bit!

-Produce it in a way where it is informative and educational yet
entertaining. Too often I find PSA dull or slow-paced which entices
viewers to switch channels. Good video and music helps.

-Show how simple it is to be an organ donor. Explain the steps
needed to be an organ donor. Education on how to be a donor.

MESSAGE

-Testimonials from recognizable, hopefully local recipients of organ
transplants would play well here. Recipients expressing the quality of
life slant. Also, testimonials from family members of organ donors.
Again, using local people.

-Testimonials by organ donor receivers; how the organ donation saved
their lives, for example.

-Show more than a "talking head". Give good reasons why the general
public should support this effort.

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-Use the'Human Interest ("This could happen to `you/someone you
love" angle.)`

-Address the (hopefully false) contentionthat families of organ donors
receive unanticipated bills to cover expense of removing,
transportation and processing donated organs - bills which previously
were assumed to have been the responsibility of the donee.

-Use faces - maybe a child's true story about receiving an organ so
he/she could live.

-Find local recipients willing to be interviewed. They're much more
interesting than "celebrities". When there's a local story call the local
news media that day.

-Let people know how vital it can be in saving a person's life, and
how easy it's to agree to be an organ donor on your driver's license. I
would probtibly -provide more time for kidney disease PSAs if the PSA
demonstrated j&t how many people suffer from this problem and how
life threatening it is.

-The people I know who don't like the idea of organ donation think it
is "sick" to have their organs removed, even if they are dead. If you
can get around this attitude, it .will be a success.

-Perhaps testimonials from prominent recipients of organs. Or an
emotional plea from someone in need - emphasize the waiting anxiety.

LOCALIZATION

-Provide useful materials to local chapters, so they can be localized.
Our license and mission is to serve our local audience in terms that
relate to their lives and needs.

-Localize with local phone number. I would encourage the
organizations to find a local angle, make the spot hard hitting and
emotional and have a media showing to local stations to debut and
distribute the spot.

-Appeal to a large variety of people and localize it (tag at end). We're
a small town and sometimes these services are not available locally --
an 800 number would be nice.

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-Try to localize, by leaving room for a.local tag OF putting local phone
numbers.`This way the frequency of air time increases.

-A brief explanation. A toll free numbe-r to have more information sent
to them. People are more likely to respond `to a .phone number.

-Local first! Red Cross encompasses all kinds of organ donations.
DON'T OVERLAP!!

PRODUCTION

-PSAs get the most airtime here if they are unique or inventive in
some way. Produce a spot that will make me notice it -- and the
audience will too.

-Maintain high production standards, i.e., .proper lighting, good visual
effects, correctly.spelled. Also, make the spot interesting and appeal
to viewer's emotions.

-Make sure the quality of the tape is superb! High broadcast quality
with a message that a wide audience range can relate to.

,-Contact with station; quality production; send it in the format that
station prefers.

-det best script and production values possible -- emulate successful
Cleo award-wining commercials and win over PSA Directors to your
cause.

-Quality of the piece -- audio-visual. Professional voice is a must. This
is the first thing that either makes or breaks a PSA.

-Keep production values high and lighten the content to whatever
,degree possible! Give a choice of videotape format -- be very specific
about kill dates.

DISTRIBUTION

-Send script and storyboard with tape -- don't ask for tape back, make
it easy for us because we receive several PSAs a day.

-Send storyboards with tape.

125


-Don't send VHS. Keep dealings with the station short.

-Make personal contact with the P.D: and person responsible for PSAs
and get to know them, find out what they want and need and work
with them. Inform them about your cause and.how it impacts on your
area. Make them a partner, as much as they desire.

-Do something to make your PSA special -- packaging, follow-up
phone calls. etc. Create an exceptional on-air product.

-Get to know the public service director and station policies on PSA
placement.

-Do not rely on PSAs only -- try to tie spots locally through
news/health reports.

-Send cover letter stating purpose of spot, importance, rationale and
storyboard.

-Call and let us know the PSA will arrive and after we receive spot do
a follow-up call.

-It really helps to send accompanying information, including what the
PSA is about, how long it should air, who the tar.get audience is, the
name, phone and address of a contact person.

-Send tape to station 3 weeks prior to air date. Select a specific
campaign time frame.

OTHER SUGGESTIONS

-Solicit the assistance of a local PR or media firm to develop a specific
campaign: 1) awareness; 2) local examples of help; 3) future plans or
developments which will provide local citizens in all demographic
groups with a better life.

-I would advise you to solicit the help of an ad agency who donates
their service to non-profits.

-Make sure not sponsor-ridden, i.e., "this message brought to you
by...,etc."

126


-Plan a local campaign using all rriedia, a local celebrity or influential
person and a hospital or major medical organizatiqn sponsoring. it.

-Please try to work. with a IocSl TV network affiliate to sponsor your
campaign. Have your local cable (TV) company co-sponsor, if
possible, so that the PSAs run on a variety of channels in addition to
the Affiliate using one of their news .anchors. You can often get news
series out of a station's sponsored campaign and much better PSA air
times and frequency.

-We need more Spanish PSA (Spanish language) spots, and alqo
involve all Radio Stations (Spanish). See& to ine that radios are the
forgotten on& I

-No commercial mention of any kind in either audio or video (even if a
sponsor is underwriting the production cost of the spot).

-Do not promote fund-raising efforts (We're non-profitj.

127


TaMe #l $raphlc Representation)

35,
- .'
25



20

  10


  5

YEARS    1979 1990    1991

NEWSPAPER ARTICLES ON
TRANSPLANTATION 1979-l 990

                                                     -         I

1992    1993    1994    1995    1999     1997    1999     1999    1999

Sources: New York Times, Wall Street Journal, Chris&m Science Monitor, Washington Post, Los An&es

NatIonal Kidney Foundation, Inc. Survey of Newspaper Articles Relating to Tran~plantetion 19794990   
                     April 1991


Table #2

SUMMiWY OF ONLINE SEARCH OF .THE READER'S

GUIDE TO PERIODICAL LITERATURE, 1983-1990
     Topic: Transphtation

1983

1984

1985

1886

1907

1988

1989

1990

jqUMBEROFARTICL="

       89

       86

        45

       69

72

95

57

70

o General transplantation articles posted.

129


Figure Ul

VISIBILITY OF ,&ZGAN DONATION

       IN 14MARjKETs
(PERCENTAGEATEACH RATrNG LEVEL)

LCALE



"10

9


8

NKF
AFWLIATE~
N - 14


0%


7

0

ORGAN PROCUREMENT
ORGANIZATIONS
    N - i4

  7%

  ,O

  29

PUBLIC SERVICE


N - 14


  o?!

  0

  0

7      36          43             17


.6      21         i4             17


5      21           0            22


4     0           7             17


3      7        ,O             11


2'     0           0             11


1      0           0             5

. ' 10 I E&heat rate of riribllity

L

Firtlonal Xldney Foundation, Inc. Sarvcj on Vbibility on Television Gatekeeper8 and m AfBlhtea
     and Organ Procurement Organizationa Regarding Promoting Grgan Donation
                     April lam

130


NKF AFFILIATE' & OPO ASSE,SSMtiNT

OF COMMUNITY PUBLIC EDUCATION EFFORTS

IN 14 MARKETS

Make Effort for Consistency
                Yes
                No

50%         64%
46*h         43*/o

Evaluate Effectiveness
                Yes
                No

540?         69%
46%         21%

xmtion8.l Kidney ?OudeiOrh, Inc. sumey of NSF Aflue- md orlrp Procurement orqrniutrorpr
         Regudlaq Romoting OrgM Donrtion
                    April1891

131


Figure 1)s
LOCALPUBLIC SkRmCE .DIRECTORS
                                                  
                                

REPORTING ON PICKING-UP. NETWORK SPOTS

NTLY

MAJOR MARKETS (N~35)

SMALLER MARKETS (N=243)

TOTAL (N=278)

96

3        I4     18

                                         .

44       140    `59

                                     .
Qj       154   77

.17%    155% : 28%[

            83%

Wionrl Kidney ?oun&tlon, Inc. Sumey of Teledaiom Gatekeapcrr Regudlng Promothg Organ
                         Dondon
                  ~prir iemi

132


VISIBILITY OF ORGAN DONATION
ACCORDING TO PUBLIC SERWCE
       DIRECTORS
       (N=278)

25

1 2 3 4 5 6 7 6 9 10

100


90


60 i

70

60 --

50 --

YES      NO     SAME

Increase In past few years

NMknr) KHnoy FouMWfh Inc. Suney on Tetevlston Gatebepers Ftegarctlng Promoting Organ Donatkn
                      Aprtll991


.Flgure #!i

1       2      3     4      5      6      7      6      9      10

IMPORTAhJCE OF ORGAN DONATION
According To Public Service Directors
       (N=278)

Percentage at each rating level

1 o most important (AIDS RANKED #l)


F lgute #6

LIKELIHOOD OF PUBLIC SERVICE DIRECTORS

`TO USE SPOTS

As Affected ,By Method of Distribution

BY AN AGENCY     BYHAND/
              BY LOCAL REP
    5%            54%

BY MAIL       ALL EQUAL

  19%            18%

N8tbMl Kldnoy Foundation, Inc. Survey on Tebvblon Gatekeepers ROgardlng Promoting Org8n Domtbn
                     April 1991

135


25

20



15



10


5

NUMBER OF PUBLIC SERVICE
                 
ANNOUNCE~MENTS AIRED PER WEEK

(ti=278)

.

>.i         : :::: :        ,:,:..j..: .:. j.:::
                        . . . "`.::.. ::::..
             .:...:.::        ,,:y: .' . .
  . ..`.           . . . .         ,,'  . . . . . .
                         .:.. : :

40     l&20     -30

NUMBER OF PSA

    4660     a60

STAllONS SURVEYED

136


Flgure #8

PUOM~
  ioo


   90


   80


   70


   60


   50

IMPORTANCE OF VARIOUS FACTORS
   IN OBTAINING AIR TIME
       (N=278)

m NOT VERY/NOT AT ALL       m MOSTNERY FIGURE


REFERENCES

1. Nathan, Howard M. et. a/.  "Estimation and Chafacteriz8tion of the Potential Renal Organ Donor
Pool in Penns yfvania: Report of Pennsylvania Statewide Donor Study. n Transplantation Vol. 5 1,
No. 1, January 1991, pp. 142-149.

2. Nathan, "Report of PennsyJvania Statewide Donor Study, n Tr8nspJ8ntation Vol. 5 1, No. I,
January 1991.

3. Nathan, "Report of Pennsylvania Statewide Donor Study," Transplantation Vol. 51, No. 1,
January 199 1.

4. The Gallup Organization, Inc. "The U.S. Public's Attitudes Toward Organ TranspJahts/Organ
Donation, a Survey conducted for the Dow Chemical Company, 198 7.

5. The Gallup Organization Survey, for Dow Chemical, 1987.

6. "Gallup Poll Confirms Impact of Family Discussion About Organ Donation, " Transplant News,
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7. Rettig, R.A. and Levinsky, N. G., ad. "Kidney FaiJure and the Federal Government: Committee
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8. Battella Human Affairs Research Canter.  "Public Opinion Concerning Organ Donation,
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9. The Gallup Organization, Inc. "The U.S. Public% Attitudes Toward Organ TranspJants/Organ
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                                  *

10. The Gallup Organ&ion Survey for Dow Chemical, 1987.

11, The Gallup Organization, Inc. "The U. S. Public's A ttitudes To ward Organ Transplants/Organ
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on TranspJant8tion, January 1985.

12. Rettig and Levinsky, ed., "Kidney Failure and The Federal Government, n Institute of Medicine,
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13. The Gallup Organization Survey for The American CounciJ on Transplantation, 1985.

14. The Gallup Organization Survey for The Partnership on Organ Donation, resuJts featured in
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15. The Gallup Organization Survey for The Partnershli, on Organ Donation, 199 1.

16. .Rettig and Levinsky, ed., *Kidney Failure and the Federal Government, n Institute of Medicine,
1991.

7 7. "Fifteen thousand transuJants in 1990 sets a new record, UNOS reports, a Transplant News,
Vol. 1,. No. 17, April 26, 199 1, p. 5.

138


18. "Fifteen thousand transplants in 1390, a Transplant News, 199 1.

13. Rettig and Levinsky, ed., "Kidney Failure and the Federal Government, o Institute of Medicine,
1931.

20. Nathan, "Report of the Pennsylvania Statewide Donor Study,." Transplantation, Vol. 51, No. 1,
January 199 1.

2 1. Oberle y, Edith T., at. al.  "Public Education In Organ Donation Review and Recommendations:
A Planning Tool for the Transplant Community. n . Medical Media Associates, Inc., 1390.
22. Directive resulting from UNOS Board of Directors Meeting.

23. "Making The Critical Difference: Education, Motivation, Donation" Participant's Workbook, The
National Kidney. Foundation, Inc., November 1990, in cooperation with the American Association
of Critical-Care Nurses, p. 9.

24. Reader's Guide to Periodical Literature, Vol. 19, April. 1953 - February 1955.  Volumes 22
through Vol. 43, March 195 I through February 1984, manual search under the headings
"transplantation (organs) n and *donation (organs) -.

25. Reader's Guide, comprehensive through Volume 19, 22-43, April 1953 - February 1984.

26. Davis, M.  "Spare Parts for the Human Body, n Good Housekeeping, 136: 106, May 1353.

27. Reader's Guide, comprehensive through Volume 19, 22-43, April 1953 through February 1384.

28. Reader's Guide, comprehensive through Volume 19, 22-43, April 1953 through February 1984.

29. "Making The Critical Difference: Education, Motivation, Donation n Participant's Workbook, The
National Kidney Foundation, Inc., 1990, p. 9.

30. Massry, S. G., ed. The National Kidney Foundation, Inc.: The First Forty Years, W.B. Saunders,
1990.

31. Massry, ad., The First Forty Years, 1990.

32. Massry, ed., The First Forty Years, 1930.

33. Pike, Rich,ard, ed., National Newspaper Index, 1981 - 199 1, subject Donation of organs and
tissues. BRS7MaxwelJ Online, Inc., 199 1.

34. Massry, ed., The first Forty Years, 1990.

35. "Executive Summary, " detailing the Status of Public Education to Promote Public Awareness of
Donation and Transplantation. Report is the result of activities carried out by The American
Council On Transplantation under the auspices of the Division of Organ Transplantation,  1989.

36. Rettig and Levinsky, ed.  *Kidney Failure and the Federal Government, * Institute of Medicine,
1991.

37. Massry, ed., The Fkst Forty Years, 1990.

139


38. "What Is The American Council On `Transplantation and What Is It Doing?" Mission statement
prepared by The American Council on Transplantation August 1986.



3.9. The American Council On. Transplant&on mission statement, .August 1986.

40. The Gallup Organization Survey for Dow Chemical Cornpan y on behalf of The Dow Take
Jnitia tive Program, 1986.

41. The Source Book 1388: A Master Reference to Increasing Public Awareness About Organ and
Issue Donation and Transplantation. The American Council on Transplantation, U.S. Department
of Health and Human Services, Division of Organ Transplantation, Rockville, Maryland, 1988.

42. Messry, ad., The First Forty -990.

43. Messry, ed., The First Forty Years, 1990.

44. M8SSry, ed., The First Forty Years, 1990.

45. "Making The Critical Difference: Education, Motivation, Donation n Participant's Workbook, The
National Kidney Foundation, Inc., 1990, p. 23.

46. "Making The Critical Difference: Education, Motivation, Donation n Particrpant's Workbook, The
National Kidney Foundation, -Inc., 1990, pp. 37 - 40.

47. The New York 7imes, October, 1990.

48. Massry, ed., The First Forty Years, 1990.

43. "FJrst Lady Barbara Bush Calls Transplantation a `Miraculous Fact' At White House Reception, *
Transplant News, Vol. 1, No. 16, April 15, 1391.

50. "Making The Critical Difference: Education, MOtiVStiOn, Donation " Participant's Workbook, The
National Kidney Foundation, Inc., 1390, p. 9.

51. "Woman Is Having Baby to Save Her Ailing Daughter, * Los Angeles fimes, Vol. 109, Fdruary
16, 1930, p. Al, cot. 1.

52. "Organ Transplants Grow In Numbers and Success: Baby Fae's Case Highlights Shortage of
Donors, n The New York Times, November 4, 1984, sec. 4, p. E8 (NJ, cot. 4.

53. "Mother Gives Child Part of Liver in Historic Surgery, * Los Angeles Times, Vol. 108, November
28, 1989, p. A 1, cot. 5.

54. Massry, ed., The First Forty Years, 1390.

55. Ogden, David A.  "Buying, Selling Organs for Transplantation - The Foundation's Position, o
Rocky Mountain Report, March 1984.

140


56, Schneider, A. and Flaherty, M. "U.S. lnvestigaticn Details Lo&e Controls, ProfiteerJng. - rn!
Pittsburgh Press, July 13, 1986.

57. Kusserow, Richard.  "The Distribution of Organs for Transplantation: Expectations and
Practices, n Draft Report, August 1990.

58. Pike, ed., National Newspaper Index Online Search, 1979-1990.

59. Internal tracking record compiled by The National Kidney Foundation with clips supplied by
Lute Press Clippings.

60. Pike, Richard, ed. Reader's Guide to Periodical Literature Online Database Search, subject
heading "donation of organs, tissues, n 1983- 199 1.

61. Oberley, et. al., "Public Education in Organ Donation Review and Recommendations," 1990;
Rettig and Levinsky, ed., "Kidney Failure and the Federal Government, a Institute of Medicine,
1991; The Source Book 1988, American Council on Transplantation, 1988.

62. The Gallup Organization Surveys on "The U.S. Public.`s Attitude Toward Organ
Transplants/Organ Donation, n 1985, 1986, 1987.

63. "L.A. Law" television series episode, aired Oecember 6, 1991, NBC.

64. "Knots Landing w television. series episode, aired December 6, 199 1, CBS.

65. "Law and Order" television series episode, aired April 2, 199 1, NBC.

66. "boogie Houser, M.D. n television series episode, aired March 13, 199 1, ABC.

67. "Establishing Accountability: A Strategic Research Approach to Measuring Advertising
Effectiveness. * Study conducted by the Advertising Research Foundation for The Advertising
Council and The American Cancer Society, 1990.

68. Advertising Research Foundation, "Establishing A ccoun tabilit y, n 1990.

69. Advertising Research Foundation, "Establishing Accountability, w 1990.

70. Advertising Research Foundation, -*Establishing Accountability, " 1390.

7 1. Advertising Research Foundation, "EstabJ&hing Accountability, n 1990.

72. Advertising Research Foundation, "Establishing Accountability, " 1990.

73. Advertising Research Foundation, "Establishing Accountability, n 1990.

74. Advertising Research Foundation, "Establishing Accountability, n 1990; Personal interview with
William Clotworth y, former Director, Program Standards, NBC TeJevisJon Network, April 1, 1991.

75. Advertising Research Foundation, "Es tab fishing Accountability, * 1990; PerSOn8f interview with
William Clotworthy, April 1, 1991.

76. Personal interview with William Clotworthy, April 1, 199 1.


                              141


77. Telephone interview with Harvey Dzodin, vice President Commercial Clearance for ABC
Television Network, April 199 1.

78. The National Kidney Foundation, Inc., "Survey of Television Gate Keepers Regarding Promoting
Organ Donation, " April 199 1, conducted specific8JJy for preparation of "94 % A wareness and Still
Not Enough 0onors"presentation paper for the United States Surgeon General's Workshop.    

79.

80.

81.

82.

Messry, ed., The First Forty Years, 1990.
The Gallup Orgat&ation Surveys, 19B5, 1986,. 1987.

Oberley, et. al,, "Public Education In Organ Donation `Review and Recommendations, " 1990.

"The Surgeon General's Workshop On Increasing Organ Donation: Suggestions for Authors, o

prepared by the Advisory Committee and distributed to authors, 1990.

83. The Gallup Organization Survey, 1985.

84. Advisory Committee, "Suggestions for Authors, " 1990.

85. Pro ttes, Jeffrey. "Preliminary Report on Public Attitudes: Anelysis of 14 Questions From the
Prottas/Batten Survey Comparing Results To Gallup Surveys in 1983 and 1985, " 1986.

86. Rettig and Levinsky, ed.. "Kidney Failure and The Federal Government, n Institute of Medicine,
1991.

87. National Kidney Foundation, "Survey of Television Gatekeepers, " April 199 1.

88. The National Kidney Foundation, Inc., "Survey of NKF Affiliates and Organ Procurement
Organizations Regarding Promoting Organ Donation, " conducted specifically for preparation of
"94% Awareness and Still Not Enough Donors, " presentation paper for The United-States Surgeon
Generet's Workshop, April 199 1.    '

89. "Executive Summary of Survey Conducted by Needham, Porter, Novelli for the National Heart,
Lung, and Blood Institute, " prepared by Needham, Porter, Novelli, 1985.

90. National Broadcast Association for Community Affairs, Ch8dOtte, North Carolina.

9 1. National Kidney Foundation, "Survey of Television Gatekeepers, " April 199 1.

92. National Kidney Foundation, "Survey of Television Gatekeepers, n April 199 1.

93. National Kidney Foundation, "Survey of Television Gatekeepers, * April 199 1.

94. Needham, Porter, Novelli survey, 1985.

95. National Kidney Foundation, "Survey of Television Gatekeepers, " April 199 1.

36. Telephone interview with Harvey Dzodin, ABC Television, April 199 1.

97. National Kidney Foundation, "Survey of Television Gatekeepers, " April 199 1.

142


98. National Kidney Foundation, `Survey of Television Gatekeepers, a April 199 1; Interview with
William Clotworthy; Interview with Harvey Dzodin.                                   

99. National Kidney Foundation,. "Survey of NKF Affiliates and Organ Procurement Organizations, "
April 1991.

100. IIt8 tional Kidney Foundation, "Survey of NKF Affiliates ana Organ Procurement Organizations, "
April 199 1.

101. National Kidney Foundation, "Survey of Television Gatekeepers; " National Kidney Foundation,
"Survey of NKF A ffiliates and Organ Procurement Organizations, " ApriJ.199 1.

102. Nathan, "Report of the Pennsylvania Statewide Donor Study, " Transplantation,. January 1331.

103. Nathan, "Report of the Pennsylvania Statewide Donor Study, " Transplantation, January 193 1.
                                                                          ,

104. Rettig and Levinsky, ed., "Kidney Failure and the Federal Government, * Institute of Medicine,
1991.

105. Nathan, "Report of the Pennsylvania Statewide Donor Study, " Transplantation, January 199 1.

106. Rettig and Levinsky, ed.,. "Kidney Failure and the Federal Government, * Institute of Medicine,
1991.

107. The Gallup Organization Survey for The Partnershb on Organ Donation, 199 1.

143



ORGAN/TISSUE DOtiATlON IN AFRICAN AMERICANS:*
        .A NATIONAL STRATAGEM

Clive 0. Callender, M.D., Department of Surger)i, Howard University Hospital

ABSTRACT

In spite of the recent overall improvements in organ donation rates per million in
1990, African Americans (A.A.) continue to be less likely than White Americans
(W.A.) to become donors (11.3 vs. 21.8). To improve A.A. donatioq, the
following data were shared with the A.A. community: 11 A.A. renal disease
incidence rates are disproportionately high, 1.3 to ten times those of W.A.; 2) the
A.A. kidney graft survival rate is lo-20 percent lower.

Sharing these data resulted in: A.A. transplant awareness increasing from 10
percent to 24 percent; A.A. signing donor cards increased from 7 percent to 24
percent (1985-l 990 Daw Gallup Polls); the number of A.A. receiving kidney
transplants and becoming organ donors doubled .nationally (Health Care Financing
Administration [HCFA) data 1982-1989). The message was carried by ethnically-
similar messengers who form the core of this successful A.A. volunteer
community-based grassroots effort, the District of Columbia Organ Donor Project
(DCO.DP).

A national Minority Organ/Tissue. Transplant Educational Program (MOTTEP)
designed after this volunteer community organization is presented as a model to
increase A.A. donor rates nationally.

Introduction

The state of transplantation is problematic for all groups, but most problematic for
the African American community as a result of unique medical predispositions,
donor difficulties, and harsh socio-economic conditions (1,2). The incidence of end
stage renal disease (ESRD) in A.A.s with hypertension continues to rise despite a

decline in deaths among A.A.s traceable to hypertension, heart disease, and
stroke. The incidence of ESRD is almost seven times greater in A.A.s with
hypertension than in their White counterparts. Furthermore, even though A.A.s
represent only 12 percent of the American population, they make up 30 percent
patients on dialysis (3,4,5).

of

o The terms African American and Blacks are used interchangeably throughout tois paper.

145


Presently, three options are available for patients who develop end-stage kidney
disease: peritoneal dialysis, hemodialysis, and. organ transplantation,
Unfortunately, no group, regardless of'race, takes full advantage of. transplantation:
all groups overwhelmingly choose hemodialysis to combat kidney disease (80
percent Whites vs 90 percent'A.A.) (5). These statistics are particularly striking
considering the burdensome problems associated with dialysis. Hemodialysis is
very costly, it requires attachment to a dialysis machine for, 12 hours a week, and
unnaturally constrains and dictates the patients lifestyle physically, socially,
emotionally, professionally, and sexually.

In 1989 there were 16.1 organ donors per million. Americans. African.Americans
donated 8 percent of the kidneys available for- transplantation (11.3 donors per
million), but received 23 pe.rcent of the available ki,dneys, almost three times as
many kidneys as they donated (3).

Ten years ago, because of a simifar situation (1,2,9) and the absence of any. prior
research on donation among A.A.s, Howard University Hospital sponsored a pilot
study to disclose the most salient reasons influencing low Black donorship. The
five primary reasons. were: 1) lack of transplant awareness; 2) religious myths and
superstitions; 3) distrust of the medical community; 4) fear of premature
declaration of death after si-gning an organ donor card; and 5) potential Black
donors' preference for assufance.of Black receivership (8). Our 2-hour focus
sessions provided education on an individual basis which proved to be the key to
changing attitudes about donation. Only 10 percent of participants agreed to sign
an organ donor card before the interview, while 100 percent signed them at the
conclusion of the sessions.

Drawing from the experiences of this pilot study, the District of Columbia Organ
Donor Project (DCODP) was developed in 1982. This paper discusses the origin of
the DCODP, the first community-based organ/tissue donor program targeted to the
Black population, and the development of subsequent initiatives which have been
used to eradicate the obstacles to organ and tissue donation and transplantation
among A.A.s.

Of vital importance to the success of this project have been the following:
1) an ethnically directed community message, 2) volunteerism, 3) ethnically
sensitive and similar messengers, 4) community empowerment, 5) private sector
sponsorship and partnership, and 6) coalitions between transplant and community
organizations. We propose that the synergistic relationships operating in these
programs will significantly increase A. A. donor rates when the National Transplant
Educational Program is extended to the Black community. We therefore
recommend establishing a National Minority Organ/Tissue Transplant Educational

146


Program (MOTTEP) coordinated through a national office, with 20 lqcal programs,
as an effective national str.ategy to increase the A. A. organ donor iate p(3r to 16
million by 1993.

Methodology and Results

In 1978, the author was first approached by members of the Southeastern Organ
Procurement Foundation (SEOPF) to identify the obstacles to organ donation in the
A.A. population and the dichotomy between low Black donorship and high ESRD
incidence rates. I have elsewhere described the critical elements of these original
efforts (1,2,8,12) but will summarize here the steps which have led to current
efforts.

In 1980, the Howard University Organ Donor Pilot Study was organized under the
direction of Dr. James A. Bayton. The information yielded from focus session
interviews with 40 members of the Black community shaped the concept for the
D.C. Organ Donor Project (DCODP). Instituted in August 1982 under the auspices
of the National Capital Area's National Kidney Foundation (NKF) and the support of
Howard University Hospital, the DCODP worked with representatives from local
members of the medical,- political, educational, business, and religious
c6mmunities.

The key founding members and subcommittee chairpersons included Harvey Silver
and Preston Englert, Executive Directors, NKF; Curtis Yeager, Transplant
Coordinator Howard University Hospital; Paula Barry, Public School Education
Chairman and Curriculum Developer; Donovan Gay, liaison between NKF and
Bureau of Motor Vehicles and fir&t .Chairman of the Financial Affairs and Grants
Subcommittee; D.C. Councilman William Spaulding, First Co-Chairman of DCODP,
who launched the campaign in Ward 5; Dr. Charles Thompson (first dialysis and
transplant patient member) former principal and Public Education Subcommittee
member; Garrett Stewart, Jr., transplant patient and iiaison with funeral directors;
Dr. Clive Callender, Transplant Surgeon, President NKF, Co-Chairman DCODP; Patti
Grace Smith, Communication Specialist, First Chairman of the Subcommittee on
Media and Community Relations.

The DCODP steering committee met monthly from 1982 to 1984 to present
subcommittee progress reports, propose future initiatives, and discuss strategies to
raise funds and disseminate the message into the A.A. community to increase the
number of A.A. organ and tissue donors. Funds raised paid for communication
materials (video tapes, slide presentations, brochures, books, and posters), the
salary of a full-time DCODP Program Coordinator, and the development of a
strategic plan, with committee input, by ethnically sensitive professional planners.
This strategic plan led to the development of ethnically sensitive messages and
techniques for effectively communicating to the A.A. community the need for more

147




A.A. organ donors. The DCODP strategic plan implemented in 1985 has been one
of the main building blocks of this effort. All presentations now include either
ethnically similar or sensitive donors, recipients, transplant candidates, family
members, or health care providers whenever possible.

The message delivered to thjs target community is ethnically sensitive, appropriate,
honest, and direct.. It allows time for meaningful dialogue and for evolving answers
to key questions. The .message is structured as follows:

The Problems:

1. The incidence of all types of kidney disease is highest in A.A. patients.

2. A.A.s with hypertension between ages 25 and 44 are twenty
times more likely than Whites to have kidne.y failure.

3. While A.A.s make up 12 percent of the American population, they
constitute 30 percent of kidney patients waiting for transplantation.

4i Kidney transplantation is less successful in A.A.s than in Whites
because we have so few A.A. donors.

5; A.A.s are transplanted at a rate of 50 percent less than that of Whites.

6. Twenty percent of A.A.s h&e transplant genetic markers that are
rarely found in Whites, hence,`the need for more A.A. donors.

Proposed Solutions:

1. The patient is the most important member of the health care team
and must feed back to the physician all information about side effects
when they occur. The physician, in turn, must respond in a sensitive
and caring fashion.

2. A.A.s should have semi-annual blood pressure evaluations after
the age of 12 (13,141.

3. If a diagnosis of high blood pressure results, a physician should be
contacted and treatment started as soon as possible. The earlier the
therapy the less likely that medication will be required and the greater
the likelihood that stroke, heart attacks, and kidney disease will be
prevented.

148


4. Treatment of hypertension is. the critical first step in early
prevention of kidney failure.' The treatment of hypertension decreases
the number of deaths from heart attack and stroke, and is likely to
decrease the incidence of kidney failure if the diagnosis is made earty
enough and treatment is begun promptly.

5. Impotence or decreased sexual libido is a side effect of some
anti-hypertensive medications, but many anti-hypertensives do not
cause this side effect. If impotence occurs, this information should be
shared promptly with the physician, who will adjust or change the
medication so that the patient's sex life is not compromised.

6. More compatible A.A. donors are likely to make the success of
kidney transplantation in A.A.s equal to the success of kidney
transplantation in Whites.

7. The.A.A. community is encouraged to start a family tradition: to
sign an organ donor card and to have a family discussion about organ
donation and transplantation at the dinner table, and at family
gatherings, and to make this discussion a part of daily living.

These problems and solutions are shared with the medical or lay community as
time ,permits with presentations ranging from 5 - 120 minutes depending on the
audience's time frame.

In 1986 representatives of the bow Chemical Company attended a DCODP
presentation at the national meeting of the American Council on Transplantation.

They were favorably impressed by the early DCODP results and inquired about
possible participation in continuing or expanding this local initiative. That same
y.ear, with Dow's support, the Dow Take Initiative Program. (Dow-TIP) campaign
took the donor education effort on a tour to 22 cities with the largest A.A.
populations. This tour was completed in 1989.

The success of these efforts led to the development in 1988 of a joint effort
between the National Medical Association (NMA), physicians, and-A.A. clergy.
This A.A. donor education project was characterized by Black physician and clergy
interactions in an attempt to dispel widely held religious myths concerning organ
donation. These groups applied the grassroots approach which had proven
successful in previous Black donor targeted programs. Th/s effort took place under
the direction of Dr. Jesse Barber, Chair of the religious subcommittee and former
NMA president, and Dr. Frank Staggers, past NMA president. Subsequent to these
experiences, in the summer of 1990 a National Black Physician Education Project
was initiated by the' NMA and the National tnstjtute for Allergy and tnfectious
Di.seases (NIAID) under the direction of Dr. Vivian Pinn-Wiggins, Immediate Past

749


President of NMA, to educate as many Black physicians as ,possible about
organ/tissue donation and trtinsplantatign.

In the fall of 1989, based upon the previous successes of th.e DCODP and the
Dow- TIP Black Donor Education Programs, the DotiI&lAACP Black Donor
Education Project was begun in New York City, Saint Louis, Memphis, Detroit,
Baltimore, and Houston. These efforts used-a successful triad of (1) a voluntary
Black community organization, the National Association for the Advancement of
Colored People (NAACP) and (2) Regional Organ Procuremetit Organizations
(ROPO) after receiving government-sponsored minority .or Black donor targeted
educational grants from the Division of Organ Transplantation, and (3) the private
sector sponsorship of the Dow Chemical Company which paid for much pf the
educational materials, public relations and media contacts. This national Black
donor targeted educational pilot program (Dow/NAACP) and its early successes are
the reason for the creation of the MOTTEP which is. proposed as a national
strategy to overcome the donor shortages of Black and other minority populations.

The National Minority Organ and Tissue Transplant
    fducation Program (MOTTEP)

MOTTEP Methodoloav A

Establish and maintain a national office for overall project direction and
coordination.

Develop Organ/Tissue Donor Programs within local communities. Use the
successful Washington DCODP as a model.

Develop a strategic plan for reaching minority populations.

Identify key minority spokespersons and the appropriate message for
their communities.

Establish a program committee of dedicated minority community workers
and volunteers committed 10 increasing the number of organ and tissue
donors.

Create and revise national and regional transplant curriculums for medical,
nursing, divinity, and mortuary science schools, predominantly minority
undergraduate colleges, and elementary and secondary schools.

150


MOTTEP Methodoloav B

Build on previous regional and national minority efforts including those
of: Dow-TIP, Dow/NAACP, the `DOT regional OPO minority grant
programs, National Institute of Diabetes and Digestive and Kidney
Diseases (NIDDK), National Institute of Allergy and Infectious Diseases
(NIAID), Office of Minority Health Affairs, Department of Health and
Human Services, and the Centers for Disease Control (C5C).

Proposed Local Proarams

Local programs will be implemented in 20 cities, whose Regional Organ
Procurement Organizations (ROPO) have received DOT minority educational grants
and Dow/NAACP Black donor targeted Organ Donor Programs (ODP). The
following cities are proposed as initial sites:

New York City - Dow
Baltimore - DOW
Philadelphia - OPO
Washington, D.C. - DCODP
Detroit - DOW
Houston - DOW
St. Louis - DOW
New Jersey - ROPO
San Antonio - ROPO
Chicago - ROPO

Atlanta - ROPO
Jackson, Mississippi - ROPO
San Francisco - ROPO
Los Angeles - ROPO
J&ksonville, Florida - ROPO
Miami, Florida - ROPO
Memphis - DOW
New Mexico - ROPO
Arizona - ROPO
Columbia or Charleston,
South Carolina - ROPO

Local Proaram Costs *

Local program cost per year                   $ 35,000
Local program cost for 20 cities (20 x $35,000)         $ 700,000
Total for 20 local programs over 5 years             $3,500,000

o costs include local program coordinator salary, consultant fees, equipment and
supplies, travel and miscellaneous.

MOTTEP National Office Operational Activitv Costs. o +

Total national office operation per year

$ 142,572

+* Costs include national coordinator, research assistant, consultant fees, office
space, equipment, telephone, postage, supplies, travel and miscellaneous.

151


MOlTEP National Marketinn Costs

Cost for national office activities, servrces,
and products

Three videotapes (production, reproduction,
and shipping)

Two national slide shows
(production, reproduction, and shipping)

Three national displays

Four national posters

National brochure

Organ donor cards

Revision of National Transplant information
Curriculum for elementary and secondary
schools (revision, production, and shipping)

Total MOTTEP National Office Costs

National office operations
($142,572 per year X 5 years)

National Office activities, services
and products ($285,000 per year X 2 years)

Local program costs (20 programs.
for 5 years)

Total costs for MOTTEP for 5 years

$ 285,000

S 108,750

$ 56,525

$ 15,000

$ 35,000

$ 15,500

In Kind

$ 53,000

$ 712,860

$ 570,000

$3.500.000

$4,782,860

152


Results

Since the development of .the District of Columbia Organ Donor Prbject in 1982,
there have been some outstanding results, including:

1. Development of a list of experts who could be called upon to speak at
various organizational groups, and church meetings.

2. Widespread distribution of "A Gift of Life Poster" featuring organ donor
cards signed by Black role models, professional'basketball star Rick Mahorn, and
former Senator Edward Brooke the most recent Black senator.

3. Introduction of a curriculum on kidney disease that has been &$Jded since
1985 in the District of Columbia public school system at the high school level.

4. Presentations to hundreds of civic and social groups including sororities,
fraternities, neighborhood advisory councils, funeral directors, lodges, women's
organizations, and other community-based organizations. Similar presentations
have been made to more than 100 of the 1000 Black churches in the Metropolitan
D.C. area.

5. Collaboration or cooperative ventures with organ donor programs in
Georgia, Florida, Chicago, California, New Jersey, and Pennsylvania. Educational
materials produced by the Organ Donor Program have been shared with at least 40
cities gnd 20 States interested in initiating their own programs.

  6. Initiating a program within the District of Columbia Motor Vehicle
Administration licensing unit whereby drivers could indicate their intention to
become an organ donor. A symbol would be placed on their license as an
indication of their intent. This effort increased the number of organ/tissue donor
symbols appearing on licenses from 25 per month in 1982 to 750 per month in
1989 (15).

7. Since 1982 the number of Black organ donors and transplant recipients has
increased significantly -- locally, regionally, and nationally (15).

.8. Seven Black organ donor targeted videos have been produced since 1987
for use in local and national Black org.an donor education efforts. These are shown
to Black lay and medical groups.

9. The Dow/NAACP Black Donor Education program has been launched in six
cities: New York and St. Louis in 1989, and in Memphis, Detroit, Baltimore, and
Houston in 1990.

153


10. Since launching the above program in 1986, information concerning Dow
Black Donor Education Media efforts has been featured in more than 275
newspapers and magazines; including USA Todav, the St. Louis Post-Disoatch, the
Detroit News, the. New York Dailv News, the Houston Post Newsweek, Parade,
&, Ebony and the JJ.
In addition,
information concerning Blacks an.d organ donation has been included on 60 local
and national television broadcasts and 70 local radio stations, generating
approximately 300 million media impressions.

11. A Black donor awareness guidebook, based on the DCODP experience was
created and copyrighted in 1987 for the Dow/NAACP Black Donor.Education
Program.

12. A Dow/NAACP Black Donor Question and Answer Brochure was created in
1989 and more than 5,000 copies have been distributed.

13. The publication. of Oraan Donation: A Minority Dilemma - Howard
yniversitv Hospital. More than 250 copies have been distributed since 1988.

14. Publication of "Start A Family Tradition", A Black Organ/Tissue donor
targeted brochure. More than 10,000 copies have been distributed since 1988.

  15. The conduct of the First and Second International Symposia on Renal
Failure and Transplantation in Blacks, in Washington, D.G. -in 1985 and 1989,
respectively. Both symposia were. sponsored by the Howard University Hospita!
and the National Institute of Diabetic and Digestive and Kidney Diseases. The
symposium now bears the name of the Samuel L. Kountz Symposium and the third
Symposium is scheduled for 1993 in Washington, D.C.

  16. The development in 1988 of two slide tapes which are targeted at A.A.
audiences: one for the lay community and one for the medical community. Both
are available to interested cities;

17. A comparison of the Dow Gallup Polls of 1985 and 1990 demonstrates a
heightened awareness in Blacks of the highly successful nature of organ
transplantation as well as a tripling of the number of persons signing organ donor
cards during that interval. This dramatic increase is at least partially the result of
the intensive Black donor education efforts described above.

Between 1983 and 1989, the gap between the supply (donors) and the demand
(patients waiting) for organs in the United States has widened from 1,050 to
9,903. Most of this change has occurred since 1986 (16). Furthermore, as of

154


June 1990, 20,828 people were waiting for organs for transplantation and- three
people die every day because of this shortage (3). Thus; the scarcity of organs
has become the major lim,iting factor. in transplantation today (7). `This appears to
mandate a priority shift for the transplant community and a critical need for their
innovative and creative energies to be directed tow.ard solving this dilemma. This
has not yet occurred. In an effort to address this concern, the author has made
the shortage of organ and tissue donors one of his highest priorities for the past 10
years. Reasons for low donorship in Black and White communities have been
examined and found to be very similar (1,`17,18,19,20,21).' Thus, efforts
successful in the Black community may be successful in communities of other
ethnic origins.

Before this pioneering effort, no Black community transplant education effort had
been researched or attempted. In addition, efforts to enlist the Black community in
solving this problem could not be found in the literature. The solution was
therefore approached in a grassroots fashion. The grassroots approach has a
unique meaning for the Black population when considering historical factors and
present socio-economic conditions. The approach has been unwittingly employed
throughout Black history but most prominently during the civil rights movement in
the 1960s. It was effective in mobilizing Mississippians to form the Mississippi
Freedom Democratic Party and in garnering support for the freedom bus rides
throughout Alabama. A sense of community empowerment is generated because
organizers discuss the problem, consider the factors surrounding the issue, and
most importantly illustrate each individual's ability to effect change (15,22,23,24).

This is particularly important when considering the lack of access to health care
and hea.lth care professionals as well as the malicious history of health care
officials using Blacks as agents of'disease states as in the Tuskegee experiment

(25). This method.clearly is not restricted to the political sphere, but can be
applied to the medical problems of the Black community as we have shown here.

The positive results of organ donor campaigns from 2 to 5 years after their
initiation is proof that the Blackcommunity when appropriately challenged will
respond (1,8,12). We attribute this success to grassroots organizing. Whether
grassroots organizing is employed in research or education, an atmosphere of
reciprocal learning is created which is especially necessary for the interdependency
between the medical and the lay communities. Coalitions are developed and
ethnically sensitive role models are generated to reach all areas of the A.A.
community to help members of the community realize their equally important roles
in organ donation. This may be particularly crucial in the A.A. community where a
combination of socio-economic factors produces a more p.ronounced schism or

155


social distance between the medical and lay. ,communities (22,23,24). Therefore,
programs like required request may be il!-fated due to the untrained or insensitive.
approach of hospital' personnel, compounded by the untimely nature of the request
(26).

The face-to-face approach utilized by the DCODP was responsible for increasing
the number of signed Black organ donor cards from 25 per month, in 1982, to 750
per month in 1989 and the Black'organ donor consent rate.from 10 percent in
1978 to 40 percent in 1989 (.15).

The Dow-TIP, born directly out of the success of the DCODP, utilized several
principles of grassroots mobilization at a national level. A media campaign using
magazines directed towards the Black community like Fbonv. Jet, Essence. Black
Enterorise. Black Health and other ethnically oriented community newspapers and
national print media played a crucial role in illuminating the urgency and necessity
for the Black community's involvement. Such articles, along with TV/radio
broadcasts and numerous .community discussion.s, laid the foundation for the
increase in Blacks .who signed donor cards from 7 percent in 1985 to 24 percent in
1990, and in transplant-awareness from 10 percent in 1985 to 32 percent in
1990, as seen in the Dow Gallup Poll of May 1990. No less impressive has been
the increase in Black organ donors as shown in the SEOPF, Washington Regional
Transplant Consortium (WRTC), HCFA, and Terasaki data (15). The WRTC data
demonstrates a marked improvement (10 percent - 1978; 43 percent - 19891 from
the 10 percent Black organ donor consent rate which existed in 1978 (15) before
these-efforts began (1,2,8,11 ,12). It also reveals for the-first time data which
depicts highly statistically significant differences between Blacks and Whites in
medical unsuitability (9 percent Whites, 30 percent Blacks) and willingness to
donate in one locale (15).

A Dow/NAACP coalition formed in October 1989 nurtures the seeds planted by the
efforts of the Dow-TIP project. Even though it is too early to quantify its
performance, two promising letters have been received, one from the
Mid-American Transplant Association and the second from the Wisconsin Organ
Procurement Organization. Since the launching of this project, data indicate that
Black organ `donations in the first 6 months of 1990 jumped to 39 percent from 15
percent for all of 1989. Similarly, the Dow/NAACP initiative was started in
Memphis, Tennessee in April 1990. One month later, a person who heard one of
the presentations on organ donation experienced a family member's tragic death.
The family decided to donate their relative's liver, in part because one family
member had learned about the critical need for organs during one of the organ
donor talks and concluded they should participate in giving. the "gift of life." As a
.result, a patient in Wisconsin with chronic Hepatitis B, in intensive care, received a
successful liver transplant.

156


The most obvious benefit of these. initiatives is an increase in the available organ
and tissue pool across the racial spectrum, significantly increasing the likelihood
that a Black transplant candidate can be successfully transplanted. A report
recently released from the DHHS Office of the. Inspector General reveals that
Blacks wait twice as long as Whites to receive kidney transplants (10). One of the
factors in this discordance is the shortage of Black organ donors. Consequently,
an increase in the .Black organ donor pool may help reduce.long waiting times.
lmmunogenetic studies have also indicated that mismatches, for certain major
histocompatibility antigens, such as HLA-DRWG, are found. with greater frequency
in Blacks than in Whites (27) and have been associated with a decreased kidney
graft survival (27,28). Recovering more organs from Black organ doriors with
similar antigens may therefore be crucial to increasing graft survival In Black
transplant recipients (4,5,19,27,28,29).

The message on transplantation and organ donation that we take to the Black
community is ethnically sensitive, appropriate, honest, and direct. Moreover, time
for meaningful dialogue is allowed because questions and answers are key. As
significant as the message is, the author has observed that ethnically simitar or
sensitive organ donor families, patients awaiting transplantable organs or tissues,
and successful transplant recipients are the most effective and credible messengers
and we use them as often as possible as the critical members of the messenger
team. When possible the messengers should be the same ethnicity as the
community addressed. Since transplant coordinators are specially trained to talk
with family members and communities about donation and transplantation, when
addressing the Black community, Black transplant coordinators are preferable.
Since only 5 percent of the transplant coordinators in the United States are Black
(16), the expertise of the Black coordinators must be maximized. In their absence,
other Black health care providers, such as psychologists, social workers, nurses,
physician assistants, etc., must be educated as ethnically similar messengers
(which is preferable) or ethnically sensitive non-Black transplant coordinators must
be trained to talk with Black families and communities.

When delivered by the appropriate messengers, this message increases awareness
about the transplant dilemma and also publicizes the need for frequent blood
pressure checks, fulfilling a preventive health community need. As individuals and
the lay'community realize the significance of their role in giving the gift of life and
the control they can exercise over their own health by acts as simple as taking
heart medication or having regular BP checks, the schism between the medical and
the lay communities should become less pronounced. The impetus for these
initiatives must come from public organizations, health care professionals, and the
private sector. .With impetus from well-informed public and .private sectors,
volunteer efforts of the community completes the team necessary for the

157


successful grassroots approach. This team can then help empower. communities to
actively participate in facilitating their own health care. The approach is
economical, appropriate, and feasible.

Below is a schemata which details the evolution of'the MOTTEP. This,program,
based on successful Black donor-targeted community efforts that began in the
District of Columbia in 1982, now. can be expanded nationally with the support of
the private sector: e.g., Dow, Sandoz, Ortho, UpJohn, Burroughs Wellcome,
DuPont, etc.; the public sector: e.g., DHHS, Regional Organ Procurement
Organizations, CDC, NIH (NIDDK, NIAID), UNOS, the Red Cross, etc.; and Black
community volunteer organizations such as the NAACP, the Urban League,
Sororities, Fraternities, the Links and Black Wome.n coalitions and organizations
including churches. As detailed' analyses are performed for each of the six pilot
cities in the Dow/NAACP project, the successful correlates should be incorporated
into the additional 20 cities targeted for donor education programs. The cost for
such a program approximates $5 to $10 million over a 5-year period. This is
relatively inexpensive when one considers that $5 billion is spent annually on-end
stage renal disease and 30 percent of the patients with end-stage renal disease are
A.A.

The minority organ/tissue donor `program could increase organ donation by 5 per
million per year. Because there are 50 million Hispanics and Blacks in the United
States (1990 census) this would mean 250 more donors and 1000 more organs
(500 kidneys, 250 livers, 250 hearts) per year, and 5,000 organs after 5 years.
Translated into socioeconomic impact, this would save 9,230 patient years.
Phillip J. Held, Urban Institute health- economist, suggests that American society
values a life at $110,000 per year. :Thus, a yearly increase of 250 organ donors
would, over a 5-year,period, save life years valued at over $1 billion.

Increased organ donation through this program would have an enormous economic
impact on Black kidney patients, who, as a group, have the poorest graft survival
rate (33 percent lost in the first year, 18 percent lost each year thereafter). Graft
life expectancy among Black kidney patients is 26 months; among Whites it is 4
years. The per-patient cost of direct medical care for dialysis and related medical
expenses is $100 per day. The cost of kidney transplantation is $30 per day per
patient. The approximate average cost benefit from this organ donor program
therefore, would be $70 a day per patient (dialysis expenses minus transplantation
expenses). If we assume that 2,500 kidney patients in 5 years would receive
transplants because of increased organ donation through this program, the total
cost savings would be $43.5 million for Black kidney patients, and $87 million for
White patients. However, if we add the cost-benefits derived from additional
transplants (for example, hearts and livers) and the resulting savings of 9,230
patient years, we would realize an additional cost savings of $1 .15 billion.

158


Recommendations:

We have described a successful grassroots approach in'th.e African American
community which has: 1) heightened transplant awareness, increased the number
of A.A.s signing organ/tissue donor cards and increased the number of A.A. organ
donors; 2) emphasized a synergistic relationship between the public sector, the.
private sector and volunteers in the African American dommunity; 3) been
successful locally (DCODP), regionally (Dow-TIP), and nationally (Dow-TIP and
Dow/NAACP); 4) emphasized the use of ethnically similar and sensitive community
role models, ethnically similar organ donor families, successful transplant recipients
and patients waiting for organs/tissues for transplantation, as very credible and
effective community educators.

Conclusions:

We propose MOTTEP as a program targeted to the minority population which will
provide an increase in the number of minority organ donors and a subsequent
potential savings to the government of $43.5 million if Black kidney patients are
transplanted and $86 million if White kidney patients are transplanted. Overall
savings resulting from the increased organ donation would extend to the benefits
of 9,230 patient years.and $1.2 billion. These benefits would be well worth the
$5 million required for the 5-year, 20 city program.

It is time now for a national expansion of the modus operandi of the DCODP into
20 cities (MOTTEP) taking advantage of the lessons learned from the previous
successful efforts. The principles outlined in this report are applicable across the
entire racial spectrum of organ donors and may be useful in the resolution of the
current acute shortage of transplantable organs and tissues.

159


The Evolution of The National Minority Organ
and Tissue TClansplknt Education Program

  Southastern Organ
Proawemeni Foundation
       1978
           I
  Homrd Unhremlty
    Hospital
      1978

      Local
National Kidney Foundation           United States Congress 1 BliS

      1982                   Minority Transplant
                           P&JrspeCtivO

I                  I

Dow Chemical Company
Take Initiative Program 1986

National Organ Transplant
Task Force and National
Organ Transplant Act 1984

t       I                   I

  DOW
NAACP 1889

Regional Organ Proawement
Organization Minority Grants
     198G90

I                I                 .

   DOW
Black College 1991


    1

      National Institute of Diabetes and
     Digestive and Kidney Diseases-
    Samuel L Kountz Symposium 1989
   National Institute of Allergy and infectious
    Diseases--National Medical Association
              1990
             1
I

   DOW/NAACP
DOW, UNOS', ROPO, NKF
  HUH, HHS, CDC


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Letter to the editor, J.A.M.A. 1989, 261:2, 194--195.

25. Jones, J.H., aBlood: Published by the Free Press, A division of the McMiilan Publishing
Company U.S.A. (Collier McMiilan Publishing Company London, Englandl. 1981, pp 4-8.

26. Marin, S., Wright, R., Clark L. Required request for organ donation: moral, clinical and legal
problems, Hastings Center Report, 1988, 18,3,2 7-34.23

27. Dunston, G.M., Hurley, C, K., Hartzman, R. T. and Johnson, A.H. Unique HLA-D Region
Heterogeneity in American Blacks. Tr8nSpf8n t Proceedings, 1987: 19, I: 87087 1.

28. Johnson, A. H., Dunston, G. M., Hartzman, R. T., and Hurle y, c. K. Polymorphism of the HLA-D
Region in American Blacks. In AIZA WA, A. fed.) Proceedings of the 3rd ASi8-oCeani
Histocompatibikty workshop conference. Sapporo University Press, Sapporo, Japan 1986: 548-
551.

29. Hendrichs, G.F., Class, F.H.J., Persign, G.C., et al, HLA-ORW6 Positive Recipients are high
respondences in Renal Transplantation. Transplant Proceedings, 1983 vol. 15: 1136.

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    HISPANICS AhiD ORGAN DONATION:
PROSPECTS, OBSTACLES AND RECO'MMENDATIONS

Jorge Chapa, Ph.D. o , LBJ School of Public Affairs, University of Texas, Austin, TX

Summary of Main Points.

Hispanics are a large and rapidly growing group with several unique characteristics
relevant to health planners and policy makers.

Hispanics are an aggregation of different national origin subgroups &th different
biological and historical backgrounds and different geographic distributions. Any
generalization about Hispanics should be checked to see that it applies across all of
the different Hispanic subgroups, The same is true regarding immigrant status,
language dominance, and class status.          .

A few States and several cities contain much of the U.S. Hispanic population.

Latinos are generally younger, poorer, and less well educated than the general
population.

There are at least three major segments of Latinos: Spanish-dominant immigrants,
English-dominant or bilingual lower class natives, and the English-dominant middle
class.

Mexican Americans have a much higher incidence of ESRD than the general
population. The incidence of ESRD among non-Mexican Latinos is not known.

The proportion of Hispanics receiving transplants is similar to the proportion on the
waiting list.

Hispanics do not have equal access to health care because of cost, language, and
lack of insurance coverage.

The strongest objections Hispanics have to organ donation seem to come from lack
of access to health care.

*I would like to thank Oscar Selvetierre, Amy Peele, Phylis Weber, Ashley Bsquero, David Werner,
Mary Genikos, en,d the members of the Surgeon General's Advisory Committee for their comments
end assistance. I would also like to acknowledge the research support provided by the Elspeth
`Ros tow Cen tenniel Fell0 wship.

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The method of approaching the next of kin for permission to remove organs for
donation can be made sensitive to Hispanic needs and concerns.    '

Family-oriented Spanish language television might be a good way to raise the issue
of organ donation in a context where potential donors could express their
sentiments to their family mem,bers.

A Hispanic-specific program could and should have a goal of general equity of
organ donation and transplantation.

Introduction

Hispanics are one of the largest and fastest growing `minority groups in the United
States. The 1990 Census enumerated 22..4 million Hispanics comprising about 9
percent of the Nation's, tota! population. In the period between 1980 and 1990,
the Hispanic population grew by 53 percent while the U.S. population grew by 10
percent (1). The literature reviewed in this paper indicates that Hispanics have a
greater need for organ transplants and that.they also havelower rates of organ
donation. The size, growth, and relatively youthful age distribution of the Hispanic
population, their socio-economic and linguistic characteristics, their medical needs,
and their .potential contributions to the organ transplant pool make the issue of
Hispanic organ donation an appropriate and vital element of a.ny effort to increase
the levels of organ donation for transplantation. This paper shall focus on barriers
to Hispanic donation and to the principles which might be applied to mount an
effective campaign aimed at the Hispanic population.

Characteristics of the Hispanic Population

Hispanics are an aggregation or agglomeration of several distinct national origin
subgroups: Mexican, Puerto Rican, Cuban, Central and South American, and Other
Hispanics. The term Latin0 has a growing preference over the use of the term
Hispanic. To reflect this and still be consistent with those who continue to use
Hispanic, I will irse the terms interchangeably (2). The Mexican origin population is
by far the largest Latin0 sub-group, constituting 62 percent of the United States'
Hispanic population.  The Puerto Rican, Central and South American, and Other
Hispanics form a cluster of values at 13 percent, 11 percent, and 9 percent
respectively. Cubans make up about 5 percent of the total Hispanic population (3).
Among these different subgroups we can find a population variety of different genetic

backgrounds, socio-economic characteristics, immigration or generational status, and
geographic distributions.  If any of these distinctions are pertinent to the specific
subject at hand, then the subgroups will be referred to individually. There are also

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many instances when Hispanics may or must be referred to as a group. There are
many similarities among all or some of the Latin0 subgroups. Also, the amount
known or written about Hispanics and organ donation is very scarce. The literature
on this topic which distinguishes between the different subgroups is almost non-
existent.

There are distinctive patterns of geographic distribution found among these
subgroups.  The Mexican' origin subgroup is the largest. Hispanic group in the
Southwestern. States, and Illinois, Puerto Ricans outnumber other groups in the
Northeastern States, and the Cuban origin Hispanics are the largest group in Florida.
Large proportions of the Central and South American and Other Hispanics are found
in Florida and the Northeast. The observation that large measuresof the Hispanic
population are concentrated in just a few States is confirmed by the percentages of
the national Hispanic population in each State as well as by the cumulative
percentages. One State, California, has about one-third of the nation's Hispanics.
Three States combined -- California, Texas; and New York -- have about two-thirds
of all Latinos in the U.S. Furthermore, the ten metropolitan areas with the largest
Latin0 population contain about 62 percen't of all Latinos. In descending order, these
are: Los Angeles, New York, Miami, Chicago, San Francisco, Houston, San Antonio,
Dallas/Fort Worth, San Diego, and El Paso (4).

Latinos are younger than the non-Latin0 population. In 1988, the median age for
Latinos was less than 26 years; for non-Latinos the median was almost 33 years (5).
The younger Latin0 age structure is reflected in the fact that the Latin0 proportion of
the school age population in many areas exceeds the overall population proportion of
Latinos. The higher concentration in younger age groups reflects higher fertility rates
and the fact that many immigrants come to the U.S. during their child-bearing yeais.
This demographic characteristic hasseveral implications for an education and outreach
program regarding `organ donation. First, a program targeted toward youths could
have long-term payoffs as these youths are exposed to circumstances over their life
course requiring them to make a `decision regarding organ donation.   The
preponderance of Latinos among the youth of many areas requires that a long-term
educational program take account.of their particular characteristics. The young Latin0
age structure also has another long-term implication -- as the entire population ages,
a large part of the Anglo baby boom population now in their late thirties and early
forties,will eventually be concentrated in the age groups over 65 from which organ
donations are not currently acceptable. The demographic future of the U.S. clearly
has a large proportion of Latinos, African Americans, and other minorities in its future
work-age population (6).

Many Hispanics, are recent immigrants and immigration accounted for about half of the
growth during the 1980s. While immigration is a major source of Hispanic population
growth and many Hispanics are recent immigrants, many Hispanics are descendants
of families which have been U.S. citizens for generations. The distinctions between

165


immigrant and native-born are often drawn in terms of generational differences.
Typically, first generation refers to foreign-born immigrants with foreign-born parents;
the second generation consists .of a- person born in the U.S. with one or two
foreign-born parents; and the third generation consists of the U.S.-born children of
U.S.-born parents. This last category includes all those who have been in this country
for more than three generations as well and, could be referred to as .the third and
third-plus generation.  If Puerto Ricans born in the Commonwealth are counted as
foreign-born, 58. percent of Latinos between the ages of 25 through 64 residing on
the U.S. mainland were first generation; 17 percent were second generation; and, 25
percent were third generation. If the first and second generation are combined, 75
percent of the Hispanics had a direct, or through i.mmigrant parents, indirect, contact
with a foreign country, a foreign culture, and a foreign language (7).

The high proportion of immigrants among Latinos explains part of their lower
attainment in education, income, and occupation. The poverty rate for Hispanic
families was 23.4 percent in 1990, compared with 9.2 percent for non-Hispanic
families. The median Hispanic family income was. about two-thirds of the median
income for non-H.ispanics. The Latinos unemployment rate for 1990 was about 60
percent higher, and Hispanics that did have jobs were concentrated in unskilled and
semi-skilled occupations (8).. A similar report for 1988 showed that half (51 percent)
of the adult Latinos had at least a high school education compared to 78 percent of
all non-Latinos. The 10 percent of Latinos who had completed 4 or more years of
college was about half of the non-Latin0 proportion of college graduates.
Correspondingly, the Latin0 high school dropout rate was more than twice as high the
non-Latin0 rate (9). Illiteracy is much higher among Hispanics than either Blacks or
Anglos (White non-Hispanics) (10). A recent study projected that in 1991, 20 percent
of the Spanish language population, would be monolingual Spanish speakers, 37
percent would be Spanish-dominant bilinguals, and 43 percent would .be
English-dominant bilinguals. It appears that the amount of Hispanic immigration in the
1980s has greatly exceeded the level assumed in making these projections. Increased
immigration would increase the Spanish-dominant and lower the English-dominant
projected proportions.  English monolingual Hispanics are not part of the Spanish
language population (11).

Immigration, however, does not fully account for the lower attainment levels of
Latinos. `I have argued elsewhere that the recent historical experience of most second
and third generation Hispanics contradicts the claim that they are achieving parity in
measures of social or economic attainment with Anglos. There is not even a tendency
in that direction. Instead, many educational and economic measures indicate that
Latinos are not making progress and some even show relative and absolute declines
even among those Hispanics who have been in the U.S. for a number of generations.
The relatively small proportion of educationally and occupationally mobile Latinos has
many social and cultural attributes of the majority Anglo population. However, there
is a large number and `proportion of second and third generation Latinos, many of

166


whom are English-dominant, who have lower income and educational levels and a
diffident orientation to many elements of mainstream institutions (12).

Segmenting and Reaching Latinos

The previous description of Latin0 characteristics and the literature cited imply that
it would be useful to divide or segment the Latin0 population into three major
groups. One consists of Spanish-dominant recent immi.grants with lower class jobs.
This group would be.concentrated in cities that had experienced substantial
immigration during the 1980s. Many Central `American origin Latinos would fall
into this category as well as a large number of Mexican immigrants. The second
group is composed of English-dominant second, third, and third-plus generation
adults with low educational levels and lower or working class occupations. The
literature cited above suggests that Mexican Americans and Puerto Ricans would
comprise most of this group and that it would be found in high concentrations in
the Southwest and Northeast. The third group consists of an English-dominant
middle class. This would be a relatively small group. The literature suggests that
it would be geographically dispersed and. that appeals or advertisements regarding
organ donation that were targeted towards the U.S. population as a whole would
also reach this group.

Currently, many advertisers believe that all Hispanics should be reached through
Spanish language advertisements. The attention paid to the Spanish language
population is a recent and well warranted recognition by advertisers of the size and
nature of this group. Any health education and outreach.program that did not
address the Spanish-speaking population would miss a large group with extensive
needs. However, not all Latinosare Spanish-dominant. The English-dominant
lower and middle class groups have to be addressed as well. Spanish language
media will reach some members of this group directly or, through family and
friends, indirectly. Areas with large Latin0 populations may require an English
language outreach campaign which targets this group as well. Hernandez and
Newman outline elements of an English language campaign that may effectively
reach the entire English-speaking audience. Their suggestion is to use an
"ethnicized message" emphasizing Latin0 food, music, language, etc., in a context
which will not disaffect the non-Latin0 audience. One example of this is using and
pronouncing Spanish words or names with the correct Spanish pronunciation in an
English language message. As another example, they mention a recent television
commercial for McDonald's depicting .a party for a young girl. To most viewers,
the commercial simply depicts a birthday party; for some Hispanics, the
commercial depicts-or suggests a auincienera, traditional coming-of-age celebration
(13). This approach takes advantage of the fact that many Latinos are
English-dominant yet identify with elements of Latin0 culture and tradition.
Common sense and empirical research both suggest that Hispanics are best
reached in their native language, whether it be English or Spanish (14).

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         Hispanic Organ Transplantation and Donation
It is surprising to find that there are'very few epidemiological studies of Hispanic
organ donation or transplantation. It is generally believed that.Hispanics, as a
group, have a higher rate of end-stage renal disease (ESRD), but this is usually
supported by references to a careful study of ESRD in Mexican Americans
conducted in San Antonio,`Texas. Pugh and her colleagues find that Mexican
Americans had an age-adjusted incidence-of ESRD three times that of non-Hispanic
Whites (15). Another study focusing on Los Angeles found that Hispanics had a
slightly lower incidence of ESRD than Whites. Given the large concentration of
young Hispanics in California and particularly in Los Angeles, the fact that this
study did not make age-specific comparisons between Whites and Hispanics limits
the applicability of its findings `regarding Hispanic rates (16).

To the degree that the findings from San Antonio are generalizable to the Mexican
American population as a whole, and the fact that Mexican Americans comprise 62
percent of all Latinos would tend to give all Hispanics a higher rate of ESRD if only
because they dominate the composition of the aggregate group. In part, the high
incidence of ESRD in Mexican Americans is tied to the higher incidence of diabetes
in this group. The higher. incidence of diabetes in Mexican Americans is a genetic
heritage from Native Americans combined with the action of a strong
environmental factor, presumably diet (17). The genetic heritage of Mexican
Americans is probably similar to Central American Hispanics but different than that
of Puerto Rican and Cuban Hispanics (!8).  African Americans also have markedly
higher rates of ESRD than do Anglos. To the extent that the increased incidence
of ESRD among African Americans.is genetic, and to the extent that Puerto Rican
and Cuban Hispanics share that genetic heritage, then these groups could also be
expected to have higher rates of ESRD (19). At this point, the incidence and
causes of ESRD among non-Mexican Hispanics is a matter of conjecture and
speculation rather than fact. The statement regarding the genetic component of
ESRD in African Americans and Caribbean Latinos should be read as a suggestion
for future research on ESRD among Hispanics.

Another area in which the different genetic backgrounds of the Latin0 subgroups
becomes important is that of the distribution of antigens. Whites, Blacks, Native
Americans, and Asians have di.fferent distributions of ABO [blood group], MHC
[major histocompatibility complex] and other antigens (20). To the degree that the
antigens among the Latin0 subgroups reflect their different genetic backgrounds,
this could limit the likelihood that organs from different subgroups would match.
However, given these differences in the distribution of antigens, it is still possible
to match and &ccessfully transplant organs between Hispanics and Anglos. A
sample of Hispanics in San Antonio, presumably Mexican Americans, were found
to have a much higher rate of transplant survival than Caucasians whether the
cadaveric donor was Hispanic or Caucasian. The survival rate of Caucasian kidney

168


transplants also was not dependent on the ethnicity of the donor. The. survival
rate of a Caucasian transplant was the same whether the donor was Cauctisian or
Hispanic. In both cases, the Caucasian survival rates were lower than Hispanic
rates regardless of the ethnicity of the donor (21 j. A similar study of renal
transplant survival rates in Caribbean Hispanics found that they also,had
significantly higher graft survival rates than,the North Americans (22).

Kidney transplants are, by tar, rne most common transplant; However, the
frequency of transplantation of other organs is increasing (3). The examination of
causes of death might indicate if these advancing technologies have a different
impact on Latinos than Anglos. The most prevalent cause of death among Anglos
in California was heart disease; the fifth most prevalent cause was chronic
obstructive pulmonary disease; and, the seventh was chronic liver disease. Among
Mexican origin Latinos heart disease was also the most prevalent cause of death,
and cirrhosis and liver disease was the seventh most prevalent cause of death
(24). To the degree that death by these causes could potentially have been    `.
prevented or deferred by heart, lung, or liver transplants, the crude comparison
suggests that Anglos might benefit more from the growth of the transplantation of
these organs than wouldLatinos (25). The information necessary to present a
similar comparison among'the different Latin0 subgroups is not available.

Most of the evidence that the rate of Latin0 organ donation is lower than that of
the Anglo population consists of comparing the proportion of Latin0 donors to the
proportion of Latinos in the service area. Such comparisons do not control for
differences in age distribution or cause8 of death, but the differences between the
donor and population proportions are often so large that these comparisons
probably do not indicate a lower incidence of Latin0 donation. For example, 52
percent of,San Antonio's population is Latino; 80 percent of organ recipients there
are also Latino, but Latinos are only 14 percent of organ donors (26). A very
informative study of family refusal rates in New York, Miami, and Los Angeles
shows that Latinos in all three metropolitan areas have much higher family refusal
rates than Anglos. Each of these cities has a predominant concentration of a
different major Latin0 subgroup suggesting that a'disinclination to donate may be
commonly found among all Latinos (27).

Another issue which remains unresolved is whether Latinos have the same chance
of getting a transplant as an Anglo. Several studies have shown that Blacks do
have a smaller probability of being the recipients of an organ transplantation even
though they experience a much higher incidence of ESRD than Anglos. The lower
proportion of minority donors does decrease the probability of matching blood   -
groups and antigens. Several of the studies showing that Blacks have a smaller
probability of receiving a kidney transplant also found the same to be true for
non-White races. However, none of these studies specified if Hispanics were
included in the data for non-White races (28).

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Comparing the proportion of Hispanics who have received transplants to those on
the waiting lists provides some evidence regarding the probability of Latin0
transplants. This comparison shows that the proportion of Hispanics receiving
transplants was within 2 percent of the proportion of those on the waiting list for
four major metropolitan areas. In two cases the transplant proportions were 2
percentage points .greater than the waiting -list proportions and in two cases the
transplantation percentages were 2 percent less than the'waiting list. The similarity
of the proportions and the existence of positive and negative differences suggest
that Latinos are getting transplantations in relation to their frequency on the
waiting list. The pattern is very different for African Americans. While they
represent a large proportion of the transplant waiting list, the percent of
transplants is between 5 to 12 percent less than the proportion on the waiting lists
in the same four metropolitan areas (29). While suggestive, this comparison does
not control for the availability of matched organs. Moreover, the waiting list does
not necessarily reflect the population that could potentially benefit from
transpla.ntation. Both individual and institutional factors could limit the placement
of minorities on the waiting list (30).

An important element of any appeal for increased organ donation among Latinos is
the claim that Latinos have a fair chance of getting an organ transplant if they
should need it. This claim is supported by the similarity of proportion of Latinos
having received transplants and on waiting lists and the fact that many Latinos
receive, organs donated by Anglos. However, the unambiguous demonstration of
this point would only help an outreach campaign. If careful examination shows
that equality of access is not currently the case, the adoption of this goal should
be considered as part of the campaign.

Barriers to Hispanic Access to the Health Care System

Hispanics have much less access to health care providers and institutions than any
other group in the United States. The factors which limit access are lower rates of
coverage by private or public health insurance, lower income levels, language
differences, and scarcity of Hispanic health providers.

Much higher proportions of Hispanics are not covered by health insurance than
those found among the U.S. population as a whole, or White non-Hispanics in
particular. Only 10 percent of the White non-Hispanic population does not have
either public or private insurance coverage compared to 37 percent of the Mexican
Americans, 20 percent of the Cuban Americans, 20 percent of the African
Americans, and 15 percent of the Puerto Ricans. Comparing Hispanics without
insurance coverage to those with coverage shows that a much smaller proportion
of those without insurance had a regular source of care and reported themselves to

If0


be in excellent or very good health. Conversely, higher proportions of uninsured
Hispanics reported never having had. a routine physical examination or having seen
a physician in the previous year (31.).

These results confirm an earlier study which-found that.insurance and financial.
                                                  
considerations were important factors in the number of physician visits by Latin0
children. In contrast, health percep.tions were important determinants of physician
utilization by Anglo children (32); A tabulation of responses from the Hispanic
Health and Nutrition Examination Survey'(HHANES) showed that by far the most
prevalent cause of dissatisfaction with access to health care was that it was "too
expensive. " Other important factors were that the wait for an appointment was
too long, the wait in the office was too long;and the long wait would cause loss
of work and pay (33). Financial and insurance status and related factors create
barriers to health care access by Hispanics. The characteristics of low income and
high poverty levels of the Latin0 population discussed earlier corroborate the
salience of these factors. These barriers are most conspicuous among the largest
Latin0 subgroup, Mexican Americans.

Another set of factors creating barriers to health care have a social, cultural, or
linguistic basis. Hispanics are extremely underrepresented among health care
professionals and this is a cause of some of the problems Latinos have in getting
access to health care (34). The ratio between the Latin0 population and Latin0
health care providers for California Latinos was more than ten times greater than
the population-to-provider ratio for the total population (35).

Some have argued that cultural factors, particularly the utilization of, or credence
in, the .efficacy of curanderos, .mq, or other practitioners of.folk medicine
were obstacles to the utilization of health services by Latinos in the United States.
A recent communication in JAMA even suggested that such practices and beliefs
were factors in the lower proportion of Latinos donating organs for transplantation
(36). However, only 4.2 percent of the Mexican American respondents in the
HHANES data had been treated by a practitioner of traditional rather than scientific
techniques. Furthermore, the utilization pattern of medical practitioners by the
clients of curanderos was indistinguishable from that of the Latinos who did not
use the services of the traditional healers. These facts suggest that the reliance on
traditional medicine is not a major obstacle to the use of medical services.

A much more prevalent "cultural" factor which may well generate barriers to health
care access is the existence of a large proportion of Spanish-dominant Latinos.
The use of, or preference for, Spanish has often been used as an indicator of an
attachment or fidelity to traditional culture, However, the Spanish-dominant
individual, who represents a large proportion of Latinos, will also be less able to
function well in English-dominant medical establishments which have, as noted
above, an extreme scarcity of Latin0 professionals. A cogent. article examining this

171


issue concludes:  "[Albility to speak English increases the extent to which
Hispanics can effectively attain institutional access.. .In sum, regardlesS of one's
level of acculturation on psychological or social dimensions, variation in language
preference seems to be a critical determinant of utilization of health services, and
is best viewed in terms of accessibility." (37)

A report evaluating methods to expand the number of organ and tissue donors
offered three hypotheses to account for the low rate of minority donation: 1)
donations may be deterred by cultural elements; 2) donations may be inhibited by
socio-political dissension; or 3) health professionals may be reluctant to approach
minority families (38). This brief discussion of barriers to better health access for
Latinos suggests that the cultural element of belief in traditional medicine is
probably not a major factor. Clearly, there are economic constraints to equitable
access to the health care system by Latinos as indicated by the prevalent concern
with health care costs and lack of insurance coverage. The reluctance to donate
organs may in part have an economic component; in some cases, the cost of
embalming an organ donor is raised by $200, The lower rate of insurance coverage
among Latinos may also limit the real availability of transplants. The amount of all
kidney transplantation costs paid by Medicaid coverage varies from State to State
(39). The third hypothesis, the reluctance of physicians to approach minorities,
could well be, insofar as it refers to LatinoS, the flip side of accessibility limited by
language. It could be postulated that economic or linguistic barriers might translate
into social or political conflict, thus supporting the second hypothesis, and -ihis
might indeed be a factor inhibiting Latin0 organ donation. However, none of the
material reviewed provides direct evidence of social or political conflict. It is
simpler and, more direct to propose a fourth hypothesis: i.e., economic, .insurance
status, and linguistic factors create'barriers to the complete integration of Latinos
into the health care system and these' factors directly and, through the consequent
decrease in integration, indirectly contribute to the lower rate of organ donation.

Hispanic Attitudes Towards Organ Donation

The amount of information available on Hispanic attitudes towards organ
transplantation was greatly increased by the survey of Hispanic households in
northern California conducted by The Gallup Organization for Dr. Oscar Salvatierra
and his colleagues with the Organ Procurement Organization Transplant Service at
the University of California, San Francisco. The survey consisted of telephone
interviews of 505 Hispanic household heads conducted early in 1987. The survey
questionnaire was designed to measure and evaluate Hispanics' knowledge of and
attitudes towards organ donation and related issues.

While 82 percent of the sample felt that they were treated fairly when they go to.a
hospital, clinic, or doctor, only 68 percent of the foreign-born respondents, 70

172


percent of the Spanish-dominant resp`ondents, 72 percent of the low income
respondents, and 74 percent of the respondents with less than a high school
education felt that they vvere treated fairly. These characteristics are all associated
and point to the characteristics of the Hispanics who are going to have the least
access to, and be the least integrated with, the health care system. The response
to two related questions also indicates a lack of trust in the system and physicians.
More than half of the respondents, 55 percent, stated that the belief.that "They
might do something to me before I am really dead," was a very important (42
percent) or s.omewhat important (13 percent) reason for not giving permission for
organ donation. The second very closely related question indicates who "they"
are. The fear that doctors might hasten their death was given as avery important
or somewhat important reason for not agreeing to be organ donors by 54 percent
of the respondents. Compared to the responses to the same question on a 1984
poll of the U.S. population as`a whole, the Hispanics' responses indicating that
these fears are factors in the decision not to donate are much higher. They are also
sentiments that connect the lack of access and. integration with the unwillingness
to donate organs.

Most Hispanics, 87 percent, are aware of organ donation and transplantation.
Again, the lowest proportions of respondents with awareness of the procedures
were found among the lowest income group, 77 percent, and those who were
either foreign-born or had less than a high school education, 81 percent of each
category. The level of awareness for the U.S. population as a whole in 1984 was
95 percent. Education and outreach could contribute to changing this for all
Hispanics, especially for foreign-born, Spanish-speaking, and less well educated
Hispanics. Two other elements that should be part of a'public education campaign
are the fact that Hispanics do have a greater need for organ transplants than
non-Hispanics; and, the fact, if it- is indeed true, that Hispanics do get their fair
share of donated organs. Only 3 percent of the survey respondents thought that
Hispanics had a greater need for donated organs and only 28 percent thought that
Hispanics got their fair share of organs. On this second issue of equity, 54 percent
were not sure that Hispanics did get a fair share. Given the uncertainty on this
issue in the professional literature, resolving this point and advertising an
affirmative finding would fill a knowledge gap regarding organ transplantation and
could influence Latinos' willingness to participate in organ donation.

Another survey response indicates what might be an important justification for,
and element of, a public education campaign targeted at Hispanics. Half of the
respondents said that the fact that they had never really thought about organ
donation was an important reason for not participating in organ donation. This
was a higher,proportion than in the U.S. population generally.

Religious considerations played a smaller role as an expressed sentiment against
donation than the issues discussed above. Only 34 percent of the Latin0

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respondents said that the belief that organ donation was against their religion was
a reason for not donating. Only 8 percent. said that their religion for,bade donation,
but 24 percent did not'answer or were not sure. About a third of the respondents
listed concerns about having their body intact for resurrection or an afterlife as
reasons for not donating organs. The religion-oriented objections are not a factor
for a majority of Hispanics, but the proportiqn of Hispanics who list such responses
is greater than for the general U.S. population. This indicates that religious
objections are n.ot a major factor among His.panics but they are relatively more
important than for the U.S. population as a whole. Another.possible indicator of
an orientation towards religious issues was that a priest was third on the list of
persons respondents would feel most comfortable talking to about organ donation.
The top two choices'would be a relative or a doctor.

This survey has additional important information on. Latin0 attitudes towards organ
transplantation, including information related to approaching the next of kin and
media use. The findings will be discussed in the following sections.

Approaching the Next of Kin

A recent study evaluating methods for increasing organ donation found that the
education of the personnel who would approach the next of kin and request
permission to retrieve the organs was more effective if it focused on methods for
approaching grieving families rather than on technical information (40).

,The California Transplant Donor Network has used the results of the San Francisco
survey to compile procedures for approaching the next of kin. It can be read as a
protocol for approaching families which responds to the suggestions of the
evaluation report above. I will briefly summarize it here:

The physician should inform the family of the death of the patient. The
concept of "brain death" should not be introduced because it seems to
mitigate the finality of the declaration. The request for permission to
retrieve organs should be separated from the pronouncement of death and
the approach made by a transplant coordinator. The next of kin may want
to defer to an elder member of the family in making the final decision. The
discussion should include important relatives, English-speaking friends, and a
priest. However, it may be advisable to keep the number of people involved
to a minimum. The content of the discussion should emphasize the routine
nature of the request and the fact that the family might be comforted by
knowing that the donation is a gift. Concerns that the- survey respondents
commonly raised can be allayed by emphasizing that the request is initiated
only after the patient is dead; that it is simple to give permission; that the
donation can be, done confidentially if there is concern that other family

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members will object; that most religions, including Catholicism and
Protestantism, support donation.; and that the procurement procedure is.
done like other surgery -- the corpse is not simply cut up. The transplant
coordinator would preferably be completely fluent in English and Spanish.
This individual should remember that many Hispanics prefer to speak English
and that some may not be literate (41).

The use of this protocol or one like. it could be the basis for starting and
maintaining an ongoing evaluation of the different aspects of the organ donation
process.

Reaching the Hispanic. Population

A public education campaign focused on Latinos should mention that this group
has a greater need for kidney donations, that the costs of kidney transplants are
covered by Medicare, that there may be associated costs which are not covered,
and that Latinos receive their fair share of organ transplants, -if further research
shows that this ,is indeed the case. These aspects of organ.donation should be
mentioned in a context which provides general information about organ donation
and transplantation. Hovvever, there is another desirable element of a public
education campaign -- it should evoke a response whereby members of the
audience tell family members that they would like to have their organs donated if
they should die in a manner where this is appropriate. The proportion of survey
respondents who said that they would give permission for organ donation
increased from 54 percent in the case where the respondent had not discussed this
issue with the decedent to 94 percent in the cases where'the decedent had
explicitly expressed a desire to donate organs (42).

One way to make an appeal with this goal in mind would be a family-oriented
television show. One example of how this might be done with reference to the
Spanish-dominant segment of Hispanics is to place an articulate spokesperson on
Sabado Giaante. This is a very popular Spanish language variety show broadcast
for 4 hours every Saturday night.. The show includes music, contests, games, and
at least one segment devoted to a serious, educational topic. A discussion of the
importance of organ donation to Latinos seems like an appropriate topic for such a
segment. A well-constructed campaign could include an appeal (on this or a
similar program) to tell a relative about the desire to donate organs.

The research literature on Latin0 media use is similar to that on Latin0
epidemiology or demographics: too often it consists of small-scale local studies
from which it is difficult or dangerous to generalize. In addition, studies of media
-use are even less useful now due to recent changes in Latin0 immigration and

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because they do not present the information necessary to segment or stratify the
Latin0 population in terms of nativity, language dominance, national origin, or
class.

Other means of achieving the same goals could include using Spanish-and English
radio and television public service announcements and organ donation themes in
popular television ,shows, particularly soap operas or novellas, which would
emphasize the importance of discussing organ donation with family members (43).
The use of different media in different languages will reach different segments of
the Latin0 population. For example, the audience that prefers Spanish language
radio differs from the Hispanic audience of English language radio in the following
ways: they prefer Spanish television, they prefer speaking Spanish at home, they
are less educated, older, listen to the radio during the morning and midday, buy
more records, tapes, and soft drinks, and are more likely to be married (44). While
none of these characteristics have a conspicuous association with organ
transplantation, this type of information could be the start of a knowledge base for
effectively educating different segments of the Latin0 audience on an individual
basis. Since it is true that, "Anheuser-Busch pitches differently to Hispanics in
Texas and California," a kealth education campaign probably would be well-advised
to follow the same principles (45).

Another way to reach the Latin0 population is with the cooperation of various
non-profit groups or community-based organizations with good connections to
various segments of the Latin0 community.

Conclusion: Would an Outreach Camoaian Taroetina Latinos be Effective or
Divisive

Some of my suggestions regarding the components of a campaign to increase
Latin0 organ donation could be seen as divisive. If Latinos do have a higher need
for organ transplants, this fact might diminish the willingness of non-Latinos to
donate. If it became known that i-lispanics are receiving their fair share of organs
but African Americans are not, then this too might create inter-group friction rather
than cooperation. Since any campaign to increase organ donation will focus
increased attention on the subject of equity, it is best to confront the issue
directly. Inter-racial equity of transplantation has been a major concern in the
scientific literature. Any increase in the attention given to transplantation, whether
it specifically focuses on minority donors or not, will call attention to the issues of
equity and fairness. The reason to focus on minority donation is because it
represents a large group of potential donors who are currently under-represented.
The way in which the equity issue should be addressed is to make equity of
transplantation and donation for all groups a strongly desired goal. A campaign
targeting Hispanics would not be an effort to treat this group differently, but to

176


recognize their differences so that they may participate equally. Ignoring current
inequities will not encourage the minorities .who are not completely participating to
change their behavior. I. suggest that efforts to improve the rate 6f organ donation
adopt two related goals, The first'is to develop the information resources
necessary to evaluate and `monitor the inter-racial equity of- organ transplantation.
The second goal is to make the attainment of equity a top priority: A commitment
and effort of this nature would provide a. welcome and appropriate encouragement
for minorities to fully participate in the organ transplantation system as recipients
and as donors.'

REFERENCES

1 Barringer, Felicity. Census shows profound change in racial makeup of nation. Bew York Timeg.
1991:48356:Al.

2 Hayes-Bautista DE, Chapa J. Latin0 terminology: conceptual bases tor standardized terminology.
Am J Public Health. 1987;77:61-68.

3 Tabulations of the June 1988 Current Population Survey Machine Readable Data Fife, U.S.
Bureau of the Census. Note that information regarding Hispanic sub-groups are not yet available
from the 1990 Census. -

4 The Hisoanic Almanac, The Hispanic Policy Development Project, Washington, D.C. 2nd Edition,
199O:ll.

5 U.S. Bureau of the Census, Current Population Reports, Series P-20, No. 438. The Hisoanic
Pooulation of the United States: March 1908. U.S. Government Printing Office, Washington, D.C.
1989:12.

6 Hayes-Bautista D, Schink WO, Chapa J. The Burden of Su~oor$ Stanford, CA:Stanford
University Press, 1988.

7 Tabulations from U.S. Bureau of the Census, June 1988 Current Population Survey Machine
Readable Data File.

8 Barringer, F. Hispanic Americans Gain but still lag economically, report says. N-a.
1991:48,567;A13.

9 U.S. Bureau of the Census, Current Population Reports, Series P-20, No. 438. JThe Hisoanir;
;: March 1988. US. Government Printing Office, Washington, D.C.
P
1989.

10 Vargas, A. Literacv in the Hisoanic Community. National Council of La Raza, Washington D.C.
1988. Note that illiteracy is not defined in this report solely in terms of English language proficiency.
There are some Hispanics who are literate in Spanish but not in English and some who not literate in
either language.

11 Veltman, C. The future of the Soanish lang!&$ge in the United Stat= . Hispanic Policy
Development Project, Washington, D.C. 1988.

177


12 Chapa, J. The myth of Hispanic Progress: Harvard J Hispanic Policy. 1990;4:3-18.

13 Hernandez SA, Newman LM. Choice of English vs Spanish Language in advertising to Hispanics.
Lawrenceville, NJ: Rider College Working Paper. 1991.

14 Dolinsky C, Feinberg RA. Linguistic barriers to consumer. information processing: information
overload in the Hispanic population. bcholoav & Marketinq, 1986:3,261-271.

15 Pugh JA, Stern MP, Haffner SM, Eifler CW, Zapata M. Excess incidence of end-stage renal
disease in Mexican American's, Am J Eoidemiol. 1988; 127: 135-44.

16 Ferguson R, Grim, CE, Opgenorth TJ. The epidemiology of end-stage renal disease: the six-year
south-central Los Angeles experience, 1980-85. AJPH. 1987;77:864-865.

17 Diehl AK, Stern MP. Special health problems of Mexican Americans. Adv Intern .Med.
1989;34:73-96.

18 Morner, M. Race mixture in the historv of Latin America. Boston: Little, Brown and Company.
1967.

19 Denton NA, Massey DS. Racial identity among Caribbean Hispanics. Am. Social. Rev. 1989;
54;790-808. This source reviews the historical use of African slaves in the Caribbean and explores
some of the contemporary consequences of this similar racial heritage among African Americans
and African Caribbean Hispanics. It does not discuss specific genetic similarities among these
groups.

20 Kasiske BL, Neylan JF, Riggio, RR, a al. The effects of race on access and outcome in
transplantation. N Enal J Med. 1991; 324:302-307.

21 Saunders PH, Banowsky LH, Reichert DF. Survival of cadaveric renal allografts in Hispanic as
compared with Caucasian recipients. Transplantation. 1984;37:359-362.

22 Baquero A, McAlack RF, Morris M, Raja R, Bannett AD. Results of cadaver renal transplants in
Caribbean Hispanics as compared with North American Patients. Proceedinas of the First
International Svmoosium on Renal Failure and Transolantation in Blacks. 1987:27-29.

23 UNOS, Annual ReDOrt on the U.S. Scientific Reaistrv for Oraan Transolantation and the Oraan
Procurement and Transolantation Network, 1988 and 1989 Health Resources and Services
Administration and the Division of Organ Transplantation, 1990.

24 Hayes-Bautista DE, Schink WO, and Chapa J. The Burden of SUDOO~~. Stanford,CA: Stanford
University Press. 1988:Chapter 6.

25 For a listing of diseases for which the transplantation of other organs is indicated see: Young
JB, Leon CA, Whisennand HH, Noon GP, DeBakey ME. Heart transplantation: no longer an
experiment. Texas Medicing. 1988;84:48-55. Lawrence EC, Holland VA, Berger MB, Noon GP,
Short HD, Whisennand HH, DeBakey ME. Lung transplantation: an emerging technology. Texas
Medicine. 1988:84;61-67. Alpert E, Garcia G, Klish W, Whisennand HH: Liver transplantation:
therapeutic option in end-stage liver disease. Texas Medicine. 1988;84:68-72.

26 Randall T. Key to organ donation may be cultural awareness. ,!AMA. 1991;265:175-6.

178



     PLANTiNG THE SEED:
ORGAN TRANSPLANTATION EDiJCATlON
FOR `CHILDREN, YOUTH, AND YOUNG.ADULTS

Robert E. Shoenberg, Ph.D.
President, Projtk ts for Ecfuca tion

Teaching young people about organ transplantation is not notably difficult. Their
lives are filled with situations ripe for discussing the topic, from school to church
to community activity. The subject is intrinsically interesting, is not`difficult to
understand, and appeals to youthful altruism. But the organ transplant community
has to offer strong inducements for teachers in,various settings to take up the
task.

Neither members of the organ transplant community nor teachers in schools,
colleges, religious organizations, and community youth activity groups seem to
want to undertake that task in any great numbers. Education efforts of the
transplant community are concentrated on medical professionals and the general
public. Few teachers or youth group leaders have been prompted by either their
own interest or the suggestion of others to introduce the topic into appropriate
situations. Strong, persistent education efforts focused specifically on young
people seem comparatively rare.      .                    

Directing concerted education `efforts to children and young adults would seem of
clear value to the organ transplant community. Helping young people understand
the facts about transplants early in life increases the chance that they will be
sympathetic to the idea of organ donation should the situation arise later in their
lives. They will be more willing to designate themselves as organ donors or to give
permission for organ donation by next-of-kin should they be faced with such a
decision. They are also likely to respond to a teacher's suggestion that they find
occasion to discuss the issue with their families or with peers, thus multiplying the
educational effect.

And then the possibility exists for that rare occasion when a young person who
has been exposed to the subject of organ transplantation and discussed it with his
or her family sadly becomes a candidate to donate organs. Exploration of the
issues under circumstances free of stress makes it easier for medical professionals
to gain consent for donation in the emotional upheaval attendant upon a young

person's dying. A recent case in Michigan attests to the fact that such
circumstances do arise.'

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This paper focuses on the opportunities available for reaching school- and college-
age people with information about organ transplantation and donation and'
suggests strategies for gaining access to those avenues of communication. As
background and point of comparison for that discussion it,considers briefly the
reasons why comparatively little education effort has been focused on this age
group and samples the efforts that have been mounted to inform young people to
see what can be learned from these programs. It concludes with some
suggestions about.likely educational approaches to children, youth, and young
adults.

The approach to these issues is that of an educator. I have had no association
with the organ transplant community prior to writing this paper and only a lay
person's superficial acquaintance. with the topic. But I have spent a professional
lifetime in colleges and universities dealing broadly with undergraduate curriculum
and instruction and 8 years as a board of education member for a large and
sophisticated school system. If my comments seem technically naive to those
who work daily with organ transplantation and donation and lack a feeling for the
texture of their professional lives, readers will understand why. I can only hope
that an "outsider's" approach may suggest some new ways of thinking about a
difficult problem.

Central Problems

The old wheeze about the mule and the 2"~ 4" has such staying power because
there are so many situations in which "YQU have to get his attention first." The
present topic is one of them. The problem is not that few know about.successful
organ and tissue transplantation or-about the possibility of becoming a donor. The
problem is rather that: (a) teachers do not think about the possibilities of organ
transplantation as a vehicle for teaching other concepts, and (b) the topic has to
compete with many similar ones for a place in the curriculum. In school and
college curriculum, school-related activities, and church and community youth
group programming, organ and tissue transplantation and donation just does not
have the clout of the man with the 2"x 4".

Nor is the topic likely to achieve the preeminence among the concerns of this age
group that would dictate its inclusion in education activities as a matter of course.
The major medical/social preoccupations related to young people are sex, drugs,
and alcohol. These topics are followed, at a considerable distance, by such
matters as stress, nutrition, and fitness. The concerns of the transplantation
community can be attached to some of these issues, but the spin that might be
given organ donation in some of those contexts would not be -particularly
conducive to the community's message.

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if organ transplantation and donation are only one among many interesting but not
essential topics. for curriculum planners and .activity programmers, the topic has
quite negative connotation for many young people, particularly late adolescents
and young adults. These groups are averse to dealing with any matter that causes
them to contemplate their mortality. In putting this paper together.1 spoke with a
university health center director who works with a quite active student health
advisory board. When the director asked the board chair.about the possibility of
the group's taking an interest in organ donation, the response clearly indicated a
distaste for the whole topic. If university students most interested in health
matters do not want'to touch the topic, what.must be the attitude of most others?

Thus, those seeking to increase awareness-in the school- and college-age
population should have as their first goal simply.getting on the agenda. Once
there, they have to be content with advancing on a broken front, trying a variety of.
tactics to reach audiences in several different situations, aggressively seeking out
and actively creating allies where they can find them.

Given the difficulty of first getting on the agenda and then- the likelihood of making
only limited progress, it is no wonder that organizations trying to increase the
number of organ and tissue donations have concentrated their public information
and education efforts on other audiences. Organ Procurement Organizations
(OPOs) focus most of the,ir efforts on medical professionals, particularly those in
hospitals. Hospital staff members are at the point of contact when the question of
organ donation arises in earnest. They are at the most proximate source'of
potential donations and are legally obliged to ask the appropriate person about
willingness to have the dying person's organs or tissues donated. It only makes
sense to concentrate education.efforts there.

It makes even more sense considering the pressures OPOs are under from Federal
regulators. The pressure now is on the bottom line: increasing the number of
organ donations immediately. Broader public education, particularly focused on
young people, takes time to produce results. The logical conclusion: given limited
personnel and funds for education activities, redouble efforts at reaching the
proximate source and making efforts more effective.

Education programs for hospital personnel, however, seem for the moment to have
achieved as much as they are going to. Indeed, that is why the Surgeon General's
Workshop is being held. Organ donations seem to have peaked and the transplant
community is looking for ways to increase them. It may be that a substantially
different approach with hospital personnel will achieve improved results. It may be
that better public education will result in more receptivity to organ donation. But it
is quite clear that the present effort to arm hospital personnel with the applicable
facts, laws, strategies, and attitudes is not producing the number of organ
donations needed and the nets have to be cast more widely.

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Associations focused on health issues related to a single organ,or type of tissue
(e.g., the National. Kidney Foundation; the American Heart Association) also
conduct extensive public education campaigns. Their,efforts, however, focus on a
wide variety of issues of which organ donation is only one. (When they do talk
about organ donation, however, they tend to talk about donation'of-all organs and
tissues, not just those that are the focus of their association.`) The greatest
amount of money and effort goes into media campaigns and other activity directed
to the general public. The Source Book of the American Council on
Transplantation, a compendium of programsfor public awareness about organ and
tissue transplantation and donation published in 1988, lists fewer programs
directed at young people than can be counted on the fingers of one hand.

So just as one wonders about the potential for improved results from the OPOs'
educational focus on health care professionals, one has similar doubts about the
ability of these associations' public campaigns to increase organ donations. More
specifically targeted education programs, among which are activities for children,
youth, and young adults, are at least worth considering.

Efforts to Reach Children, Youth, and Young Adults

Contacts with key members of the organ transplant community nationally and in
major population centers have turned up only scattered examples of education
materials and programs specifically directed at young people. By far the most
prevalent such efforts are presentations for school classrooms and assembly
programs.

Typically, the offer to conduct such a program comes from the education section
of an OPO or association, although some organizations outside the transplant
community, such as the Junior League, have taken a specific interest in organ
donation education. The group wishing to present the program sends a request to
a school official: superintendent, curriculum supervisor, or principal. Sometimes
the request is routed to a teach.er who might wish to schedule such a presentation,
sometimes it goes in the wastebasket or languishes on the principal's desk.
Occasionally a teacher responds and the session is scheduled. Thus, of many
seeds sown, only a few germinate.

The more successful programs target teachers, who have the most direct control
over the day-to-day content of classroom instruction. The problem is getting
names for an accurate mailing list and following up with personal contacts. OPOs
and association regional offices cover large areas with many schools and school
systems. They have limited staff to devote to identifying the likely targets by
name and contacting them in such a way as to maximize the possibility of gaining

184


entry to the classroom. The best solution has been finding a receptive school
system and concentrating efforts there before moving on to another interested
system.

Once having achieved a strong position in a school community, the problem is.to
continue arranging presentations in those schools year after year wh/le expanding
the program of classroom presentations to other systems. No organization I
located had been carrying out a .focused program long enough to have faced that
problem.                                                 

Prior to initiating contacts with schools and school- s.ystems, organ donation
educators must decide what part of the school curriculum they wish to target.
Would they most wish to present an assembly program or speak to students in a
particular course such as heaith education, driver education, biology, or general
science? Do they wish to reach elementary school students or concentrate on the
secondary schools? Clearly, different programs are required for different
situations: one size does not fit all.

Tailoring the presentation involves knowing how to relate the material to the
general purposes of the course and the content of classes immediately preceding
and following it. A talk in a driver education class, in which the context is
agreeing to sign the organ donor form, should be differently designed than a
presentation in a health education course which is part of a unit on organ systems.

These distinctions do not appear to be clearly made. The presenting agencies
most frequently have an all-purpose videotape that is the focal point for the
presentation. The agency representative introduces and bases comments on the
tape. Most such presentations incorporate, if at all possible, an organ recipient or
the relative of a recipient, most desirably a person close in age to the audience.
Freque.ntly the main presenter is such a person. Sometimes a physician is included
in the presentation.

This general format is designed for a one-time, stand alone presentation. It is quite
effective in increasing awareness and knowledge about organ transplantation and
donation and beginning to dispel myths. The comments of recipients and their
families, either on tape or in person, leave a strong impression, but one does not
know how, long the impression lasts or what specific results it produces. We have
only anecdotal information.

Some teachers are perfectly satisfied to have a presentation unattached to the
general design of their courses. If some more organic connection needs to be
made, they will make it. Conversely, I suspect that at least some of the fesiStaflCe
to presentations on organ donation in health and science classes is due to the
perception that it will not work into the flow of the course, that it will be an

185


interesting but not notably relevant side trip.  Teachers need to see how the
subject of organ transplantation `can be used in connection with a particular topic.
to illustrate a general poi.nt. Understood this way, organ and tissue transpMtation
could be dealt with'in studying the immune system, organ systems, science and
public policy, medical ethics, or social psychology.

This same tendency to treat organ transpjantation and donation as an unrelated
topic is manifested in the curriculum materials that various groups have produced
and distributed.. Even when the'materials have been designed for use in a
particular course, the assumption seems to be that the teacher is to treat the
subject on its own terms rather than as a specific case of a more general issue.
For example, a unit on "Donating and Transp!a.nting Organs and Tissues" designed
for eighth grade health education classes lists these objectives:

o  Students will develop an understanding of, issues concerning the donation
   and transplantation of human organs and tissues.
0   Students will identify which parts of the human body may be donated to
  promote the improving and/or saving of another individual's life.
a   Students will identify at least three common misconceptions surrounding the
  issue of donating human body parts.

These objectives, or for that matter any other part of the unit, give no clue as to
whv the student ought to be learning this material, or to what other aspects of the
students' personal or educational experience this knowledge might attach.

The few curriculum guides I have been able to locate and classroom materials,
such as coloring books, I have seen are not a reasonable basis on which to
generalize about other instructional supports that may be available, if indeed any
exist. Two guides are clearly expected to be used in specific situations, one for
driver education classes, one in a religious education context. The driver education
guide, except for its emphasis on the. Uniform Anatomical Gift Act and the Uniform
Donor Card, could be used in any situation. So could the materials designed for a
religious setting. They are not sectarian and differ from the public school materials
only in their greater emphasis on altruistic motives and empathic responses.

All the curriculum guides focus on mastering the vocabulary of anatomy and organ
transplantation at a level appropriate to students' ages and to provide some
exemplary cases through which to understand processes and issues. Sample word
games and coloring books are provided for younger children, model tests and
discussion topics for older ones. All seem designed to persuade students to adopt
certain attitudes or, in the case of older students, sign a donor card. All could be
strengthened .to some degree by less tendentiousness and., in the case of older
students, more emphasis on ideas to discuss and less on producing right answers.
When a teacher's guide is provided, it offers far less information than instructors

186


are likely to need and employs some technical vocabulary which teachers should
not be expected to know. In short, these curriculum guides offer some useful
ideas and materials, but as the controlling documents for a unit are rather a mixed
bag.

Apart from the standard approaches to curriculum and instruction offered by these
guides, some unusual programs- and resources are worth attention:

"Debbie Donor Doll" is produced by Soft Sculptured Dolls of Dallas,
Texas. "She" is a child-sized soft doll'who can be zipped open to
reveal removable cloth organs and tissues attached by Velcro tabs.
Children can see where the organs are located and can "transplant"
healthy organs and tissues.

"The Kids on the Block" is a program designed originally to help young
children understand the problems of their differently-abled peers. The
"Kids" are large puppets worked .by trained performers. Ideas are
communicated by and through the puppets. The program has been
extended to deal with such problems as sexual abuse and substance
abuse. Recently, Tennessee Donor Services contracted with The Kids
on the Block, Inc. to develop an organ donation and transplantation
program which is now available to any OPO.

"Teens for Transplants" is a program of the American Organ
Transplant Association (AOTA) working with the High School for
Health Professions in Houston, Texas, LifeGift Organ Donation Center,
and the Texas Medical Center. The 40 students involved are all
considering careers in the health professions. Through the program
they get a sense of the possibilities their future work might offer by
providing one-on-one peer sup.port for young transplant patients at the
Medical Center, engaging in donor awareness programs focused on
minority communities, and learning what it is like to do organ
transplant work as a health professional. AOTA has formed a new
division to propagate the program.

Use of The Kids on the Block represents a good example of getting organ and
tissue donation into the curriculum by using the topic to serve a larger purpose.
The puppets teach responsible social behavior by providing young children with an
avenue for discussing their social attitudes. The strategy encourages honest
expression of feelings and reduces the risk of such expression. The general goal of
encouraging empathic response, surely an important purpose of early elementary
schooling, can be approached through a variety of subjects, of which organ and
tissue donation is one. Thus the topic gets attention in a way integral to the
curriculum.

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Teens for Transplants is a fine example of using extracurrjcular activities as a-way
to reach young people.. To .be sure, siting. the activity at a high school whose    
program is designed for future health:professionals gives it a chance for success
rarely duplicated, but such an.activity does not- require such a setting. All sorts of
service-oriented clubs and activities find fertile soil, in high schools, appealing .to
many teenagers' altruistic instincts. Indeed,. organ and tissue donation
organizations may find their time better spent in approachin'g students through the
extracurriculum than through the curriculum. At both hig.h schools and colleges,
service clubs and student government groups are looking for suitable projects.
Donor awareness activities within the school or the community meet their needs
well and give the organ transplant community-an `opportunity to educate a group of
students in a setting providing more receptivity than the classroom.

Transplant education agencies should be aware, however, that sustaining such
activities over a number of years requires a lot of effort. Teens for Transplants
chapters have a good chance of lasting because they are focused on a single
concern in much the same wav as Students Again.st Drunk Driving.

If, however, the leadership of a student government association or service club
gets excited about organ donation and mounts an excellent effort in that area,
there is no guarantee that the effort will ever be repeated. Student organization
leadership changes every year and the next year's leaders may have other
enthusiasms or less ability. The University of Pittsburgh chapter of Mortar Board,
a national undergraduate service honorary, involved four Pittsburgh area colleges in
a highly successful organ and tissue donor awareness program in 1985. Different
leaders the next year had other interests or less energy and the effort .has never
been repeated despite the excellent project documentation the graduated leaders
left behind.

The only college and university program. at the national level is an activity program
for National Organ and Tissue Donor Awareness Week put together by the
American College Health Association, a group comprised principally of health
center directors. The Association put together a packet of educational materials,
suggestions for publicizing the Donor Awareness Week, and ideas for activities.
These materials were made available at no cost to campus groups interested in
using the occasion to increase public awareness.

Apart from this program, any attention .paid on college campuses to organ and
tissue transplantation and donation appears to be a matter of the interest of
individual faculty members. A number of social scientists have research interests
in this area. The research subjects are frequently college and university students.
In. their involvement in these experiments, which deal with attitudes toward
transplantation, students may end up learning a good deal about the issue.3

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Information about the efforts of student organizations on college and university
campuses is likely to be fugitive. No information exists about OPOs or   
associations directing their efforts. toward postsecondary education and individual
campus efforts are probably scattered and short-lived. There may be a fertile field
there, but no one seems to have plowed it.

Conclusions

Efforts specifically directed at informing children, youth; and young adults about
tissue and organ transplantation are scattered and of variable sophistication. In
few cases are they the principal focus of someone's job. The programs brought
into schools and the materials made available to teachers, approach transplantation
and donation from the point of view of the transplant community rather than that
of the curriculum. The most imaginative and successful programs reflect an
understanding that transplantation stands a better chance of becoming a subject of
instruction as an illustrative example of a more general topic than as a topic in and
of itself.

The possibility of reaching young people through extracurricular and community
activities remains largely unexplored. Despite the difficulty of sustaining programs
once they are successfully begun, the possibility of payoffs from young people's
altruistically motivated volunteerism would appear to make the effort worthwhile.

Reasons for transplant educators' marginal efforts to mount programs specifically
directed at the school- and college-age population are quite understandable.
Education activities are the concomitant rather than the focus of OPOs' activities.
They have comparatively little. funding and staff for education and'must devote
most of their attention to hospital personnel. General public education comes
second, with programs targeted at specific populations third. Only now is the
realization growing that targeted campaigns may produce better results than
broader efforts. But they are also more expensive of staff time.

OPOs now find themselves in a particular squeeze. Newly proposed Medicare
regulations make immediate increases in organ procurement a necessity for
survival. Education programs aimed .at young people produce most of their results
over the long run. OPOs feel the need to focus their efforts in areas that will
produce the most immediate results.

As the number of OPOs decreases, the geographic area assigned to any one OPO
increases. That enlargement of the service area makes it all the harder to maintain
the personal.contact with individuals in schools and colleges whose interest and
cooperation is essential to a successful program for students.

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The associations, on the other hand, are in the business of education, .but
transplantation is only part of that business. They are concerned about health
maintenance, support for research, and treatments short of transplantation before
they get to the transplantation issue itself.. The associations, too, are beginning to
think more about education programs for particular groups, but they still. rely
mostly on public service announcements, posters, bookmarks and national
awareness days and weeks.

Even with time and determination, schools and colleges are difficult to penetrate.
No curricular priority creates a reason for classroom discussion of organ
transplantation and donation any more than dozens of other scientific, medical, or
public policy matters. Requests for the schools' curricular attention are
overwhelming. One health education curriculum coordinator reports 400
solicitations a year for adoption of particular texts, inclusion of units of study, and
purchase of teaching materials. Only occasionally does an item that comes in over
the transom get adopted.

The .main focus of programs in schools is one-time presentations in assembly
programs and health and driver education classes. All-school assemblies are the
best setting for the kind of presentation transplant organizations are prepared to
make, but fewer and fewer schools even have such events.

Driver education classes, too, are a fading feature of school life, but talk about
organ donation has a clearly identifiable place in such courses. Even though
curriculum materials for the most part conveniently negiect the fact that a signed
organ donor card is for practical purposes meaningless as a form of consent to
donating one's organs, discussion of donation and the signing of the Uniform
Donor Card is valuable. The discussion itself raises awareness. If students then
introduce the discussion at home, the matter comes to the attention of their
parents, most of whom are in the age range that produces the most donors. Most
important of all, signing the donor card is for many students one of the first acts of
assuming adult responsibility for the general welfare.

Health education and biology classes.in the secondary school and the science
curriculum in the elementary school would seem the most logical place for
discussion. of transplantation. However, the approach to the inclusion of units on-
transplantation here is far too limited and educators have shown very little
imagination about exploring other curricular areas in which to embed their
message.

Penetrating the college curriculum requires more effort than the result would
justify. Decisions about course content at the level at which transplantation
discussions might occur is entirely in the hands of individual faculty members.
Trying to identify the few who might find that.organ transplantation or donation

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provides a good vehicle for illustrating a point they would like to,make,is not a
good investment of time.

The best entry to post-secondary institutions is through student groups:
fraternities and sororities, service organizations, `honorary societies in various
disciplines. This approach through the extracurriculum holds promise for high
schools as well. Organ donor education groups must, however, be prepared to
deal with the problem of sustaining effort. Either they must accept the fact that a
program successful one year may die the next or be willing to provide the kind of
organizational support that will keep the program intact through periods of weak or
uninterested student leadership.

While the lives of most young people center on their schools and, for half the 18-
21-year-olds, on colleges, people in this age group are also involved in community
activities: church groups, boys' and girls' clubs, scouting, 4H Clubs, Little League
baseball and its equivalent in other sports, youth auxiliaries of adult organizations,
and so on. Focused efforts to reach the African American community have used
churches as a vehicle, In recent'years the Boy Scouts offered an opportunity, now
discontinued, to earn a merit badge in organ and tissue donation awareness.
Otherwise the transplant community seems to have i,gnored the possibility of
reaching young people through their community activities and concentrated instead
on the schools.

Despite the major pitfalls and the investment of staff time necessary to mounting a
successful education program aimed .at young people, the potential payoff is worth
the effort. Current strategies have brought organ and tissue donation to a steady
state. Moving to the next quantum level requires new strategies. Young people
are a large group whose characteristically sympathetic response to others' needs
makes them a receptive audience for the transplant community's message. In the
classroom setting they are also, to put it bluntly, a captive audience. But if the
message can be carried by an appropriately designed vehicle, the topic of organ
transplantation is of sufficient inherent interest to engage their attention. They
then become a conduit for discussion of organ donation at home, producing,
ideally, a multiplier effect. And as they mature and are perhaps called upon to
make decisions about the donation of others' organs, they stand a good chance of
being more receptive to the notion, having better factual knowledge.

Those young people who find the matter of organ donation particularly compelling
are a prime source of volunteers. They have time, energy, and commitment which
can easily be put to use by regional associations, OPOs, and the like. If only as a
means of recruiting volunteers, the efforts to reach children, youth, and young
adults may be worth the time.

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To succeed in these efforts, educators in the transplant community need to mount
persistent and coordinated efforts,. Such efforts may' not be possible for regional
organizations whose attention is pulled in many different directions and whose
funding is unstable. Coordinated efforts beyond the. regional level and funding
targeted for specific education efforts would be.helpful. It is clear that the current
level of effort which with rare exception is occasional, casual, and unsystematic
will not begin to tap the enormous potential that young' people hold for increasing
the level of organ donation.

Recommendations

In making recommendations, I am tempted to suggest that the organ transplant
community try all the avenues that seem plausible to reach young people. Since
so little has been tried and the efficacy of so much of that has yet to be
demonstrated, it is hard to know what will work.

Many of the following recommendations are suggestions about practical matters of
procedure on the local scene rather than matters of policy or practice on a larger
scale. The focus on particular practices grows from a perception that, at least for
the time being, education programs will be carried out by regional groups and by
people largely unfamiliar with. the way schools and colleges work. Thus my first
desire is to help avoid wheel spinning.

A. Curriculum

(1) Design curriculum guides and clas'sroom presentations as an integral part of, the
course of study rather than asstand alone segments. Organ transplantation and
donation as a topic in and of itself really has no natural place in the curriculum
except perhaps in driver education. As a specific case of a general principle,
however, it fits in countless places. For example, the topic can be introduced in
studying the immune system in biology, anatomy, and physiology courses; in
studying human anatomy in a health course; as a public policy issue in a political
science or current events course; or as a science and ethics issue in a general
science or philosophy course. Any good teacher, unless he or she has a personal
interest in the topic, will want the cunicular materials or presentation tailored to
the purposes of the course.

(2) Curricula and presentations should acknowledge some of the complexities
surrounding organ transplantation and donation, as is appropriate to the
understanding of students of the age for which the materials are designed. Too
much of the material suggests that if all the myths were d-ispelled, organ
transplantatioh as it is currently practiced would be seen as an unmixed blessing.
Questions about such matters as organ sharing among OPOs, who gets organs,

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and cost-benefit issues should be introduced and discussed. While one does not
expect elementary schoo! students to raise such questions, older,students are not
so naive and need to have these issues.dealt with honestly.

lf a major purpose of donation and transplant awareness activities in schools and
colleges is to get the issue discussed around the dinner table, then (3) all programs
and curricula should include strategies students can use in introducing the topic at
home. Even in the most s'tructured situations students cannot absolutely be
required to raise the issue, but they can be strongly urged and helped to do so.

B. Dealing with schools

(4) Focus efforts on people who are the real decision makers about curriculum.
Superintendents and principals almost never make decisions about particular items
of curriculum. Those decisions are, to all intents and purposes, made by
curriculum coordinators at the system level and individual teachers at the school
level. Except in rare instances when the superintendent has a strong personal
interest in seeing that organ and tissue transplantation gets some curricular
attention and wants to-do something throughout the school system, he or she will
not want to get into the matter at all. Even working through the curriculum
coordinator, the best likely result at the system level is introduction of an optional
unit for teacher consideration. The best way to get on the agenda is to work with
individual teachers.

Given these facts of curricular politics, writing letters about available programs or
curriculum materials to superintendents and principals is not cost effective. Even
writing to individual teachers will yield no better results than one might expect
from a direct mail campaign. (5) Contact the relevant decision makers personally,
presenting to them options for materials and presentations that are specifically
geared to topics with which the curriculum for that course deals. That strategy
requires a lot more preparation than offering a canned program and probably
requires a representative of the organ donation agency who knows something
about curriculum. (6) Where possible, agencies should employ a staff person with a
good knowledge of school curriculum. As I have frequently suggested, the
transplant community may more effectively get its message into schools through
student clubs and organizations than through the classroom. (7) Organ transplant
educators should try enlisting student organizations such as service clubs, student
government associations, Students Against Drunk Driving, or peer counseling
groups in their efforts. An active, carefully guided donor awareness effort by a
student government can educate a whole generation of students and perhaps
produce some.volunteers for the OPO or organ association. in the process. Even if
.the program is not picked up by the organization in the following year an
advantage has been gained.

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More likely to. have staying power are organizations like Teens for Transplants..
Such an organization has donor awareness and volunteer work`with patients as its
purpose for existence.. A charismatic advisor can get such a program well
established and give it a strong basis for longevity. (8) The organ transplant
community should support the efforts of the American Organ Transplant
Association to establish Teens for Transplants organizations in high schools.
Student organizations do not generally exist on the elementary school level. Other
than the classroom, the best point of entry for elementary schools is the PTA. (9)
OPOs and association chapters should work .with PTAs to design programs suitable
for their meetings. PTAs are always looking for topics for programs. Organ
transplantation and donation is an interesting topic with some personal relevance
to individuals in almost any community. If a central purpose of getting organ and
tissue transplantation into the school curriculum is to get the topic discussed in the
family, PTA programs would seem a more direct way to achieve that result,

All of these strategies are easier to implement if one is dealing with school people
who have a prior interest in organ and tissue donation. People who have
themselves been organ or tissue recipients or close relatives of recipients are
natural allies. But one-may also create allies by enlisting them in the cause.

(10) Agencies should establish education advisory committees composed of people
influential in the local education community. A curriculum coordinator, a PTA
president, a science department head at the local university, an influential teacher
can provide useful advice on designing programs directed at young people and can
become active players in facilitating their adoption. Although the care and feeding
of such a committee takes some time and thought, members' support for the
agency's education activities can. be well worth the effort.

C. Postsecondary Institutions

In postsecondary institutions, the best approach is through- student organizations.
Fraternities and sororities are always looking for public interest projects. While
some efforts are short-lived, others may go on for years and become part of the
life and character of the organization., Service honoraries are often similarly at a
loss for services to provide. Since they turn over their membership completely
every year, getting an activity rooted is more difficult, but encouraging a one-time
effort, if it is substantial, may. be worthwhile. (11) Donor awareness groups
should work with undergraduate organizations to mount donor awareness projects.
Opportunity may even exist to create an analog of the Teens for Transplants
program on college campuses, using pre-medical or health.education students as
its basis.

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D. In the Community

Many untested opportunities exist for reaching young people through the
community. The only particular model that has been used often enough to suggest
some promise is using religious schools and-youth groups as an avenue for
education. (12) Donor awareness groups should `work with churcheg and
synagogues to identify opportunities for youth education. and service activities.
Beyond the religious groups, a variety of youth organizations offer possibilities.
(13) Donor awareness groups should make an informal inventory of youth groups
in their service areas to determine which offer structures conducive to awareness
activities and have supportive adult sponsors.

E. Research and Funding

Of 29 awards made in 1988 and 1989 under the Division of Organ
Transplantation's grant program for OPOs, only.two were for education activities
directed at children and youth. Given the disincentives for addressing this
population, substantial activity will require far more support and specifically
targeted funds. (1.4) The Division of Organ Transplantation (DOT) should seek
funds to establish a gra.nt program to encourage donor awareness programs
designed for children, youth, and young adults.

Such a grant program could be included in the activities of a Donor Education
Network with the responsibilities recommended by the American Council'on
Transplantation (ACT) .' This Network's purpose would be "to coordinate the
many separate public education initiatives conducted by transplant-specific,
transplant-related organizations, and organizations that are interested in the cause
of organ and tissue donation and transplantation on a project-oriented basis."
Developing materials for education programs of many different kinds and to
address many different audiences is clearly much more than any single organization
can take on. There is not even a good mechanism for sharing ideas or
collaborating on program and materials development. A coordinating body could
facilitate development of more sophisticated materials and strategies geared to a
variety of audiences. (15) The DOT and the organ and tissue transplantation
community should take steps to create a Donor Education Network.

The Network, among other tasks, could foster research on the effectiveness of
education activities. The ACT found that nearly half of public education programs
incorporate no evaluation.5 The summaries of the DOT grants indicated no
provision for evaluation. Clearly research on the effectiveness of these programs is
necessary. (16) The DOT should use part of its 1 percent @valuation funds to
assist grantees in evaluating their programs.

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In Conclusion

Organ and tissue transAantation.and `donation education programs for children,
youth, and young adults are in an early stage of development. Substantial efforts
are few and time and money for them are limited. Most are- not very sophisticated
in the way they approach schools and school curriculum. The range of types of
programs is narrow and the avenues of .approach to young people have not been
widely explored.

Scattered examples of reasonably successful programs exist, though some of them
have been short lived. These programs can form a. basis for expanding activity if
funding and the regulatory climate will alloti. But the effort needs a boost of both
national attention and funding if it is to get off the ground.

1. Letter from Eleanor Forlenze, Administrator, Transpl8nt and Health. Policy Center, Ann Arbor, MI,
to Judith B. Braslo w, Director,. Division of Organ Transplantation, March 13, 199 1.

2. American Council on Tr8nsplentation, "Executive Summary" of "An Assessment of Public
A w8reness lnitietives Promoting Org8Nissue Donation and Trensplantetion: Findings and
Recommend8!ions, o 1990, p. vi.

3. Several reports of behavioral science research on attitudes and beheviors with reg8rd to
transplsntation, using college students as subjects, 8re reported in Oman Donation and
Transolant8tion: Psvcholooicel and Behavior81 Factors, ed. James Shenteeu and Richard Jackson
Harris /Washington, DC: American Psychological Association/, 1990..

4. Executive Summary, p. rii.

5. ibid., p. vi.

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SbURCES

This topic calls for a listing of the sources of helpful, practical information. The listings thet follow
are partial, reflecting only what the author was able to discover in the course of writing this paper.

Books

American Council on Tr%nSplant%tiOn, Th
              $88. A Mast& Reference &
                      e Sou ce 800
                                        r     k?
lncreasino Public Awareness About Oman and Tissue Donation and Transnlentation (19881.

Psvcholonic%l and Behevioral Factors, ed. James
Oroan Donation and Transolantation:
Shari teau and Richard Jackson Harris f ? SSO), American Psychological Association.

Reports

American Council on Transplantation, "An Assessment of Public Awareness Jniti8tives
Promoting Organ/Tissue Donation and Transplantation: Findings and Recommendations"
119891.

Task Force on Organ Transplantation, Oman Transplantation: Issues and Recommendations
(1986), U. S. Department of Health and Human Services, Health Resources and Services
A dminis tra tion.

Curricula and Teaching Ma ttiials

National Kidney Foundation of Eastern Missouri & Metro East, St. Louis, MO, *Giving and
Receiving the Gift of Life. n fMateri%js designed for use in 8 religious education environment.
Separste curricula and materials for K-3, 4-6, Junior High School 8nd High School).

Transplant and Health Policy Center, Ann Arbor, Ml, "Donating and Tr8nsplanting Org8ns
and Tissues: An Eighth Grade Module. w

Transplant Recr;Oients International Organization (TRIO).  Various classroom handouts and
ins true tional activities.

The Virgini Transplant Council, Richmond, VA, "Organ and Tissue Donation Curriculum
Guide. w Both a general purpose guide and one designed specifically for driver education
classes.

PIograms of Interest

American College He8lth Association, Orgen Donor A w8reness Week materi8ls for use on
college campuses. Contact: Richard Fasano, Southern Illinois University, Carbondale, IL.

American Organ Transplant Association, Missouri City, TX, "Teens for Tr%nSpl%ntS. *

Junior League .of Baltimore, "Second Chance. W

Junior Loague of Pittsburgh, "Organ Transplant Outreach proiect. n

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Mid-America Tr8nsplant Associ8tion, St. Louis, MO. Schools Oytr88Ch project. Contact:
Theresa P8rkb Thomas.

Tennessee Donor Services, NashviJte, TN, "The Kids on ihe Block, lnc; a Contact: Eliliabeth
S. Nuckolls, BSN.

T'ching Aid

"Debbie Donor Doll, a available from Soft Sculptured Dolls, Dallas, TX.

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INCREASING ORGAN AND TISSUE DONATION:

WHAT ARE THE OBSTACiES, WHAT ARE OUR OPTIONS?*

Arthur Caplan, Ph.D., University of Minnesota
Laura Siminoff, Ph.D., University of Pittsburgh
Robert Arnold; M.D., University of Pittsburgh
Beth Virnig, M. P. Hi, University of Minnesota

The Procurement of Organs and Tissues in the, United States:
Grappling with Scarcity

Inadequacy in the supply of organs and tissues has been a constant and frustrating
reality in the field of transplantation for more than a decade. While no reliable
statistics existed as to the number of Americans waiting for solid organs until
1987, and no precise-numbers exist now as to how many Americans are waiting
for tissues, scarcity has long been a fact of life for those in need of transplants.

At the end of 1987, the United Network for Organ Sharing (UNOS) waiting list for
solid organs showed 13,396 names. In 1989 there were 19,173 names. At the
end of 1990, there were 22,008 names on the list, an increase of more than 40
percent from the previous year. The list has been growing despite the fact that a
record number of solid organ transplants, 15,162, were performed in 1990, a.
significant increase over the 13,.176 organ transplants done in 1989.

Two thousand new patients are added to the list of those waiting for organs each
month. Between a third to a half of all Americans on transplant waiting lists for
hearts, livers, lungs, and heart and lungs die before a transplantable organ is found.
Some experts estimate that a new name is added to the list of those waiting for
organ transplants every 30 minutes.

As of March 11, 1991 the number of persons on the UNOS waiting list were:

Kidney    18,205    Heart/lung   181
Lung      410    Pancreas    524
Liver      1,311     Heart     1,899

* work for this paper supported in part by a grant from the Agency for Health Care Policy and
Research (AHCPRI No. 5RO 1 -HSO65 79-020

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Between 2,500 and 4,000 Americans are on waiting lists for cornea transplants
during any given month. Tens of thdusands more await transplants of skin, bone,
ligament, joints, dural matter, heart valves, and bone marrow.

The shortage of organs for newborns and very you'ng children is especially acute.
Twenty five percent of those waiting for liver transplants are children less than 10
years of age. In 1990, nearly 400 infants born with congenital defects of the
heart died because there were no donor hearts available for them.

There are many reasons to believe that the demand for organs and tissues will
continue to increase at a rapid rate. There have been'major improvements in the
efficacy rates associated with all forms of transp!antation. The shift i,n the
demographics of our nation's c'itizenry toward an older population means that more
individuals are likely to need transplants. Improvements in immunosuppressive
drugs combined with a better understanding of the genetics of the immune system,
provided by knowledge acquired through the human genome project, hold out the
promise of continuing improvements in efficacy rates and for increasing the
number of potential recipients of transplants. And, there are more and more
centers capable of perfarming transplants.

In the past two decades there has been an explosion in the number of medical
centers performing both tissue and organ transplants (Russell, 1986). Whereas
only a decade ago a mere handful of medical centers were capable of even
attempting bone marrow transplants, today dozens of centers have done so. In
1985 one center had done pediatric heart transplants. In. 1990, `35 medical
centers reported experience with at least one pediatric heart transplant, In 1991.,
20 more medical centers had indicated to the International Heart Transplant
Registry that they intended to perform pediatric heart transplants (personal
communication, 1991). Rapid increases in the number of centers capable of
performing liver, lung, pancreas, intestinal, and heart transplants means that there
will be increased demand for these solid organs. Similarly, the number of medical
centers willing to undertake non-related bone marrow transplants has been growing
at a very rapid pace.

As transplant surgeons begin to fully master the techniques of transplantation and
as. newer forms of immunosuppressive drugs become available, the eligibility
standards for potential recipients are expanding. Broader standards of candidacy
promise to fuel a continued demand for organs and tissues Kaplan, 1989). Age
limits of 55 for heart and liver transplants that prevailed in the 1970s have long
since been broken.' Diabetes is no longer an absolute contraindication for kidney
transplantation. Persons suffering liver failure resulting from alcohol abuse have
.been. successfully transplanted. Fetus to fetus bone marrow transplantation has
been attempted for various metabolic disorders.

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All of these factors contribute to what will be an inevitable increase in the demand
for organs and tissues. Improvements in t.echniques for `bridging' those in need of
transplants, new forms-of cellular transplantation such as myoblast transplants for
those with muscular disorders, atid the modification of the immune system of
donor and recipient through genetic engineering will only add to the demand.
Scarcity is the single greatest challenge facing those.in need of transplants and
those who wish to help them and will be so for the foreseeable future. The
challenge facing our nation is to understand the organizational, legal, moral,
regulatory, educational, and financial factors that currently underpin organ and
tissue procurement' in order to see whether there are any changes that can be
made which will help bridge the gap between. supply and demand in
transplantation.

The His r
t
     to v o f Publi P lit
           c o v and Ethics Reaardina Procu remen

Organs and tissues have historically been obtained almost.exclusively from human
sources. The primary source of organs and tissues in the United States has been
cadavers. While living donors have been used to obtain kidneys, bone marrow,
and, in recent years, segments of pancreas, lobes of lung and liver, cadaver
donation is the single most important source of transplantable organs and tissues.
Yet, because of the particular way in which transplantation techniques have
evolved over the past four decades, public policy, law, and morality regarding
cadaver donation has been strongly influenced by policies that were formulated
primarily in response to the practice of using living donors.

Voluntary Choice

The first organ transplants were attempted in the early 1950s. These early efforts
involved kidneys from living donors. Since there were no reliable methods for
overcoming immunological differences between donors and recipients, no
techniques for preserving organs outside the body, or for artificially maintaining
bodily functions in cadavers, the only possible donors and recipients of kidneys
were twins or biological siblings.

Law, religion, and public policy viewed the early days of transplantation with
apprehension. Kidney transplants were seen as highly experimental. Some
religious leaders worried that organ donation involved the mutilation of the body
solely for the benefit of another and, as such, constituted an immoral act (Vatican,
1960, Meyers, 19901. Still other religious groups were concerned that God's gift
of stewardship over one's body might not permit organ d,onation (May, 1985).

Those asked to provide donor kidneys were seen as requiring the protection of the
state and the legal system so that neither coercion or ignorance were allowed to

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play roles in efforts to secure orbans. Since the outcome of kidney transplantation
was not known; American courts would only permit the use of living sources if
organs were voluntarily donated. Donors had to give informed consent knowing
that their sacrifice might not eventuate in success. Courts held surgeons
responsible for making sure that no one served as. a donor as a result of coercive
pressure from the potential recipient or other family members.     

American courts and State legislatures generally held that incompetent persons
such as children or p.ersons who were either severely mentally ill or retarded could
only donate organs if surrogate consent was provided by family members or    '
guardians. The imposition of risk on incompetent persons was only'allowed under
the presupposition that the decision to donate is one that the incompetent person
would have made were they to suddenly become competent (substituted
judgement) or that the prospective donor could be harmed by the knowledge that a
sibling had died because an organ,was not available (best interest) (Meyers, 1990).
The norm of voluntary choice is amply reflected'in a long series of state court
decisions to allow incompetents to donate based upon the doctrine of substituted
judgement (Scott, 1982).

The emphasis on voluntary choice as the moral basis for permitting donors to
assume risks in the face of uncertain benefits was carried over to cadaver
donation. The concern about informed consent grew when it was discovered that
during the 1960s some physicians had surreptitiously removed pituitary glands
from cadavers in order to obtain growth hormone to help children born with
congenital dwarfism (Caplan, 1984). ,Public and Congressional outrage over the
removal of tissues from bodies without consent was so overwhelming that it
resulted in an effort by health care professionals, government officials, and lawyers
to create a means wherein voluntary choice could be guaranteed as a condition of
cadaver organ or tissue procurement (Sadler and Sadler, 1984).

In the 1960s a flood of new technologies including respirators, heart-lung bypass
machines, and artificial feeding tubes swept into medicine. These technologies
allow physicians and nurses to keep organs functioning in individuals in whom no
brain functions can be detected. This led physicians to call for a modification in-
the definition of death to include not only the traditional definition of the cessation
of cardiac and respiratory function but also the complete and irreversible cessation
of all brain function. Various model statutes were advanced proposing a brain
death standard in the late 1960s (Capron and Kass, 1972) and had been adopted
by more than 30 State legislatures by 1975.

As the concept of brain death gained acceptance in medical and nursing circles, it
became clear that a mechanism was needed to allow individuals who wanted to
donate organs or tissues upon their deaths to do so. The concern about the need
for voluntary consent and the deeply held conviction that removing organs or

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tissues from a cadaver without consent was manifestly, immoral and repugnant led
to the idea of an advance written directive for donation--the donor card (Sadler,
Sadler and Stason, i 968).

Altruism

By the late 1960s transplantation had made great progress. Kidney transplantation
could be succes;sfully accomplished using cadaver sources. Techniques had
emerged for preserving and shipping kidneys and other solid organs. Surgeons
were experimenting with transplantation of the liver and heart. Cornea
transplantation had become a well-established therapy.

This progress led to a good deal of public debate about whether public policy
should be changed with respect to organ and tissue procurement. Some analysts
argued that the success of transplantation justified abandoning the prerequisite of
informed consent in favor of laws and public pdlicies which would permit the
routine salvaging of cadaver organs (Dukeminier and Sanders, 1968, Columbia Law
Review, 1969). Others argued that, rather than abandon informed consent, the
time had come to consider permitting financial rewards to those willing to make
organs and tissues av&able after their deaths (Michigan Law Review, 1974).

Neither of these proposals to change the moral and legal foundation of organ and
tissue procurement was successful. Critics of presumed consent and routine
salvaging argued that it was unfair to imperil the rights of those opposed to organ
and tissue donation on religious grounds (Ramsey, 1970). Others were concerned
that public policies which allowed either the routine removal of organs and tissues
from cadavers or financial incentives to encourage making organs available would
corrode social attitudes toward the dignity of the body and the sanctity and worth
of the individual (May, 1973). The argument that prevailed was that public policy
and law should favor both voluntary.choice and altruism because these moral
values were consistent with the desire of Americans to respect individual
autonomy and liberty and that public policies based on these values might permit
an adequate supply of organs and tissues to be obtained from cadaver sources if
adequate efforts were made to encourage public altruism (Caplan and Bayer,
1985)

These moral values, informed choice and altruism, still constitute the ethical
foundations of organ and tissue procurement in the United States today. One
option that exists to increase the supply of organs and tissues from either cadaver
or living sources is to institute laws and public policies that are not grounded by
these values; Any assessment of the desirability of pursuing such strategies
requires some understanding of the nature of existing State and Federal laws.

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State and Federal Laws Pertainincr to Donation

The concern that the donation of organs and tissues be voluntary and altruistic
was reflected in the earliest national legislation dealing with donation.. In 1968,
the National Conference of Commissioners on Uniform State Laws adopted the
Uniform Anatomical Gift Act (UAGA). By 1972, versions of this law had been
passed in all 50 States. The Act specifies .who may execute an anatomical gift
and how individuals may do so--by signing a donor card. State laws recognized a
signed card as, in and of itself, completely sufficient for donation. There was and
remains no need for next-of-kin to be approached or to consent when a donor card
exists. Health care professionals who make a good faith effort to locate
next-of-kin prior to relying on a donor card to remove organs and tissues are
immune from legal action, To ensure that decisions to donate were autonomously
and altruistically made, subsequent State and Federal legislation, the National
Organ Transplant Act of 1984, explicitly prohibited the sale of organs.

If a deceased person has-not completed a donor card then the UAGA permits
donation based on the consent of relatives or guardians. In such circumstances
family members are given the right to veto a donation. The law clearly recognizes
that family members have a legitimate interest in the fate of the cadaver, but does
not recognize a property interest.

Initial efforts to increase organ and tissue procurement were tied to this legislation.
Public education campaigns encouraged'persons to sign organ donor cards. These
early campaigns appealed to altruistic motivations to encourage donation. People.
were encouraged to "Make the Gift of Life". Many States enacted laws allowing a
modification of their driver's license applications to permit the indication of a
willingness to serve as an organ or tissue donor.

In the 1980s two major legislative changes were introduced in an effort to increase
procurement. One set of changes aimed at increasing the efficiency and
proficiency of organ procurement organizations. The other aimed at encouraging
greater awareness of the option of donation and more opportunities for donation to
occur.

The National Organ Transplant Act of 1984 established a grant program whereby
the Secretary of the Department of Health and Human Services could make grants
for the establishment, initial operation, and expansion of qualified organ
procurement organizations. These organizations were to establish procurement
agreements with hospitals and health care professionals regarding donations. Later
legislation, including the Omnibus Budget Reconciliation Act of 1986 and the
Health Omnibus Act of 1988, attempted to further increase OPO efficiency and
power by setting minimal standards for procurement performance. Tissue
procurement organizations were not affected by these laws.

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Legislation was also enacted requiring that request for donations be made of family
members at the time of death. Initially, required request laws were enacted by
States. Both Oregon and New York passed such legislation in 1985. By 1988; 44
States and the District .of Columbia had enacted some form of "required request"
legislation governing both organs and tissues from cadaver sources.

TWO types of required request laws were passed. Twenty-six states and the
District of Columbia have "strong" required request laws. These laws require
health care professionals to document in writing on the death certificate that a
request was made and the outcome of the request. The remaining States have
"weak" laws which simply require that hospitals develop protocols to ensure that
family members are made aware of the options of organ and tissue donations.

In 1986, the United States Congress enacted legislation requiring hospitals to
institute weak required request policies. The Health Care Financing Administration`
issued regulations on July 31., 1987 and made. the existence of protocols for
informing families of the option of donations a prerequisite for Medicare
reimbursement eligibility. These regulations went into effect on March .31, 1988.
Shortly thereafter, the Joint Commission on Accreditation of Health Care
Organizations established a policy of weak required request for hospital
accreditation. It is important to note that the National Organ Transplant Act
explicitly affirmed the prohibition on the sale of organs and some tissues. The Act
was modified in 1988 to include a ban on the sale of fetal organs. Numerous
States have also acted to ban the sale of organs and some tissues. Exceptions to
these policies have been made for certain types of replenishable tissues such as
plasma and sperm.

It is interesting (and an exception to the general voluntarism and altruism of
procurement policy) that 10 States and a small number of cities have enacted
legislation granting authority to medical examiners and coroners' offices to procure
organs and tissues from unclaimed bodies undergoing autopsy. For example,
Louisiana, Florida, Ohio, San Francisco, and Denver permit procurement from
bodies under the control of medical examiners when no family members can be
found and there is no reason tc assume any prior objection to procurement.

lea
P bli Su                                         i

There are a variety of ways of measuring public opinion on organ and tissue
donation. One strategy is to see how well informed members of the general public
are about various aspects of donation and transplantation. Another indicator is
determining `how willing individuals say they are to donate their own organs, or
assessing the reported willingness of the public to donate the organs of their family
members. In addition to prospective attitudinal studies, actual donation rates can


be determined as.can the percentage of people carrying organ donor cams. These
indicators offer somewhat inconsistent findings about public support for organ and..
tissue donation.

According to numerous public opinion surveys and polls.conducted over more than
10 years, public education campaigns unde.rtaken by various organ and tissue
procurement organizations, community groups, government agencies, and private
foundations have been quite effective in increasing public awareness regarding
transplantation (American Council on Transplantation, 1985; Caplan and Bayer,
1985; Task Force on Organ Transplantation, 1986). Recent polls show that 98.7
percent of Americans are aware of transplantation (Evans and Manninen, 1988).
Over 78 percent of adults- say their overall feeling about being an organ donor is
favorable. A majority accept the idea that being an organ donor helps other people
and is the "right thing to do."

Various public opinion polls have indicated that between one-half and
three-quarters of those polled would want to donate their qwn organs'after death
(Caplan and Bayer, 1985). People'are more likely to report being willing to donate
their loved ones organs than their own (62.5 percent vs. 49.3 percent in Evans
and Manninen, 1988)

Some studies in the early 1980s showed consent to donation rates as high as 80
percent being obtained by some OPOs (Prottas, 1984). But more recent studies
indicate that there may be a serious gap between hypothetical responses and real
world behavior. Health care professionals report that roughly three-quarters of all
families they approach are very likely or likely to refuse (Caplan and. Virnig, 1990).
Some States report consent rates:at 15 percent or less (Edwards, Ohio Department
of Health, 1991).

The disparities reflect inaccuracies inherent in asking questions about hypothetical
behavior. For example, a frequently cited reason for the disparity between
willingness to donate their loved ones' organs and their own is based on the fear
that their families will allow their organs to be removed before they are `really
dead' Kaplan, 1992).

Some of the disparity between the small proportion of people who report carrying
donor cards and the larger proportion who report being willing to donate their
organs can be attributed to uncertainty about the donation process (Manninen and
Evans, 1988). Some people, while sympathetic to transplantation, appear not to
have actually thought about the donation process (Nolan, 1989).

Among families who have actually donated a relative's organs surveys reveal that
they overwhelmingly did so from the belief that something positive would come
out of a tragedy. They also felt that donating helped them in their grieving process

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and they were motivated by the hope`that someone else might live. Of the
families who have donated, 89 percent report they would do so again (Prottas and
Batten, 1986).

Questions of allocation are important to the public,--black and white alike. Evans
and Manninen (1988) report that over 88 percent of those surveyed were
concerned that `organs be distributed fairly and equally,' and over 81 percent
reported that `medical need, not social or economic factors should be the only
criterion used to select transplant recipients.' Likewise, Watts (1991) reports that
participation in organ donation programs is inhibited by doubts about fairness in
the allocation of organs and tissues.

public opinion polls support the hypothesis that blacks are less sudportive of
donation than whites (Callender, 1989; Watts, 1991). There are several possible
explanations for this cultural difference. One study suggests that there may be a
tendency for white health care professionals to be less willing to ask black families
to donate (Maximus, Inc., 1985). Callender (1989) suggests that blacks are less
likely to donate because of a lack of awareness'about transplantation, religious
fears, distrust of the medical community, fear that donors will be declared dead
prematurely, racism (blacks do not want to give their organs to non-blacks).
Interestingly, similar reasons are cited in explaining low donation rates generally
(Basu, 1989, Watts, 1991). Among the reasons cited for a lack of willingness to
donate are: religious objections (Watts, 1991), a fear that they will be allowed to
die prematurely, (Nolan, 1989; Watts, 1991), a desire to bury the body intact
(Nolan, 1989) and uncertainty about whether anyone wil! really benefit from
donation or that everyone has a fair chance of benefitting (Watts, 1991).

In recent years, social scientists have studied the factors influencing people's
views regarding organ donation and their decisions to sign (or not sign) an organ
donor card. These studies show that:

1.   Persons of color are somewhat less enthusiastic about transplantation
  and are less likely to sign donor cards than are whites. In a recent
  survey (Gallup, 1991 for Partnership for Organ Donation) 76 percent
  of whites and 45 percent of blacks say they would be likely to
   donate.

2.

Favorable attitudes toward donation are also more common among
women, persons with a higher socio-economic status, greater
education, and serious health problems. A variety of psychometric
studies show that people who are more materialistic view their organs
as more central to their sense of self. Interestingly, some studies
suggest that patients are more likely to donate when told about the
benefits to themselves rather than emphasizing the benefits to others.

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3.

Despite the generally positive public opinion toward transplantation
and donation, at most only a quarter of the public has signed an organ
donor card. This rate is especially low among teenagers and young
adults. A variety of explanations for this relatively low percentage
have been offered including:

a)

People do not fill out organ donor cards-because to do so would
make them aware of their own mortality (Watts; 1991).

b)

People's positive views regarding donation are outweighed by
their fears concerning organ donation. The most common
concerns are being declared dead prematurely so that organs
may be procured for others and the fear of mutilation. One
study found that two facts about death - the attitude toward
death and the fear of being declared dead too soon - are

predictive of organ donation behavior with respect to carrying a
d&or card.

cl

There is growing evidence that people's concern regarding the
fairness of organ distribution adversely affects the decision to
sign donor cards (Watts, 1991).

d)

Donor cards are not where the public wants them. A recent
public opinion poll. found that a substantial minority did not
know where to obtain donor cards; they are not available in
health care facilities where the public expects to find them
(Watts, 1991 I.

Empirical inquiry via polls, surveys, and studies reveals high levels of public
understanding about transplantation and relatively high levels of general support for
transplantation. On the other hand, respondents to surveys are more likely to say
they would be willing to consent to the donation of an organ by a relative than
they would be to donating their own organs or tissues. There are many fears and
doubts about the process of donation which seem to trouble large numbers of
Americans. Most importantly, the hypothetical levels of support are not born out
in practice either with respect to the number of Americans who have donor cards
or with respect to the number of families who actually give their consent to
donation when a death occurs.

gr clan Donor Cardg

Forty-five States allow people to indicate organ donor status on their. drivers
licenses (Overcast, 1984). The proportion of persons reported in the literature as
carrying a donor card varies, ranging from less than 8 percent (Bermel, 1984) to

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over 37 percent. (Basu, 1989). Data consistently indicate that more highly
educated people are.likely to report .carrying a donor card (Simmons, Bruce,
Bienvenue and Fulton, 1974; Mannienen and Evans, 1985; easu, 1989). Some
studies have also found that younger people and women are more likely to carry
donor cards (Simmons, 1974; Lewis, 1986).     

The actual value of organ donor cards in obtaining organs is unclear. Some
suggest that their primary value is encouraging discussion with families, rather
than as an indicator of patient's wishes at the.time of death (Prottas, 1983;
Caplan, 1984). Others have noted that physicians and nurses very rarely look for
donor cards prior to making requests of families, and that the presence or absence
of a donor card is not overly influential to health care professionals. (Caplan, 1984;
Overcast, 1987).

There are other important limitations to donor cards' ability to increase donation.
The most important limitation is that most organ procurement agencies will not
procure organs without family consent, regardless of the p.resence of a donor card.
Overcast et al:, (1984) surveyed OPO and district attorney offices in all 50 States
and the District of Columbia to determine the extent to which donor cards were
effective in obtaining organs. Few donors were known by hospital personnel to be
carrying cards at the time of death. Caplan informally. polled groups of OPO and
tissue bank personnel in 1984 and 1985 and found no reported instance in which
an organ or tissue had been procured solely on the basis of a donor card. Despite
the legal sufficiency of donor cards, misunderstanding of existing State laws plus
the fear of adverse publicity has led hospitals to de facto require family consent
prior to donation.

Cards do not seem to be effective as a means to facilitate donation. However,
they may play a pivotal role in influencing the attitudes of family members if they
are approached about donation.

The Performance of the Current Svstem for Obtainina Oroans and Tissues

There are many steps in the process of procuring organs. These include:

1.  a traumatic injury or accident occurs
2.   resuscitation efforts are made
3.  transfer to hospital
4.   treatment attempts
  recognition of the inevitability of death
5.
6.  recognition of potential donor status
7.  decision to cease treatment efforts
8.  discussion with family of imminence of death

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9.  diagnosis and declaration of death

10.  discussion with family concerning donation
11.  request to family for donation
12.  consent
13.  establishment of donor suitability '
14.  notification of OPO for procurement
     (adapted fr.om Waltzer, 1983)

All of these steps `must occur in the order described for procurement to happen
under the laws, regulations, and practices that currently control cadaver organ
procurement. Tissues differ in that the sequence begins with the pronouncement
of death. Modifications can be attempted at any one of a number,of points in this
sequence in the attempt to `elicit increases in organ and tissue procurement. We
will only focus on four especially crucial stages in the sequence: identification of
donors, discussion of donation with donor families, obtaining consent, and the
procurement of organs concurrent with OPO identification.

Identification of donors

The donation of internal organs such as liver, heart, kidney, and lung is restricted
largely to brain dead, heart beating cadavers. Thus, most organ donors are found
in hospital Intensive Care Units (ICUs), having suffered an acute catastrophe such
as.a car or gunshot accident, a drug overdose, or a cardiac arrest. Tissues, such
as cornea, bone, and skin, can be obtained within 6-24,hours of a cardiac arrest.
In many cases those who could-not donate organs may be eligible to donate
tissues since organs are currently taken only from those pronounced brain dead.

There is some disagreement about the frequency with which organ donors are
distributed in acute care hospitals. Some studies indicate that the majority of
prospective organ donors cluster in hospitals which hand.le high volumes of trauma
(Partnership for Organ Donation, 1990; Garrison, et. al. in piess). Other studies
indicate a much broader distribution of prospective organ donors (Nathan, et. al.,
1991) throughout various sizes and, types of hospitals. Potential tissue donors are
generally thought to be widely distributed throughout the acute care hospital
system.

A recent study of the size of the potential donor pool in a large eastern State
showed that the number of donors was between 38 and 55 per million population
(Nathan, et. al., 1991). This was estimated to be about three times the rate
currently procured nationwide. Other research suggests that patients admitted
because of traumatic intracranial injury were identified as possible donors most
frequently while patients suffering vascular or anoxic catastrophes were identified
less frequently. Unidentified donors had bee,n admitted to three major services

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(neurosurgery, neurology, and internal medicine). The percentage of `missed'
potential donors was highest among internists.                             

Unrecognized donors tended to be older and had longer hospital stays,
Interestingly, there was no clear influence of hospital size, trauma center
designation, or the number of KU beds on the number of missed .potential donors.

Health care professionals fail to- identify medically suitable donors for a variety of
reasons (Toole, 1983). Failure may result from the lack of a comprehensible
hospital policy clearly designating the health care professionals responsible for
assessing patient's medical suitability. Some .hospitals require that attending
physicians or their designees carry out this task, but make little effort to educate
physicians.

Health care professionals' lack of knowledge may decrease their ability to identify
eligible donors. Some doctors and nurses have trouble understanding or accepting
the concept of brain death. In one study only 35 percent of 195 physicians likely
to be involved in procurement correctly identified the legal and medical criteria for
brain death (Youngner, 1989). Some ICU nurses and physicians are uncertain
about the validity of brain death (Martyn, Wright and Clark, 1988). OPO directors
claim that in roughly 12 percent of cases, brain death is either unrecognized or
recognized but not declared.

Other studies have documented a more general lack of knowledge regarding
procurement criteria (Diamond, Campion and Mussoline,. 1987). In one study
roughly one-half of ICU nurses said that doctors were unaware of donor eligibility
criteria and one-third said that nurses were unsure (Prottas and Batten, 1988).

Problems of donor identification may relate less to a lack of knowledge or
responsibility than to lack of time or interest. Other responsibilities may be more
salient to health care professionals than determining donor eligibility (Robinette,
1985). Nurses are especially likely to feel too overburdened with other
responsibilities to spend a great deal of time identifying potential organ donors
Kaplan and Virnig, 1990).

Discussion of donation with families

Numerous studies over the past decade show that a relatively small percentage of
hospitals were responsible for supplying a large percentage of organs and tissues.
For example, one small study found out that one-third of 105 hospital patient
deaths were eligible to donate corneas, but that families' were approached in only
16 percent of cases. In a recent survey of neurosurgeons, over two-thirds were
hesitant to cooperate with organ procurement because they feared speaking with
families.

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A study of organ procurement in a trauma population in Vanderbilt Hospital from
1984 through 1987 revealed that 23 percent of eligible donors were not asked to
donate. Why is there such resistance to approaching family members. to discuss
donation?

First, in many hospitals no person or group of persons is clearly responsible for
talking with families about organ and tissue donation (Captan and Virnig, 1990).
Consequently, families may never be approached about donation.

Second, health care professionals who do discuss procurement with families may
be uneasy about performing this task or lack training as to how to do so.. One
study found that 50 percent of health professionals reported that their fear of
upsetting a grieving family inhibited their initiating discussions. Other health
professionals were concerned about the amount of time such discussions require
(Robinette, 1985). Another study found that 20 percent of ICU nurses had
strongly ambivalent feelings about the organ procurement process which may
interfere with their ability to discuss donation (Sophie, 1983). In some instances
physicians and nurses are reluctant to approach families when they feel a sense of
guilt or responsibility for the death of their patient. This `is especially so in the case
of children and newborns. Finally, concern regarding legal liability is common
among physicians and may also affect discussions regarding donation (Prottas and
Batten,- 1988).

Consent

Although, as noted earlier, numerous public opinion polls report that families are
`willing to donate their relatives' organs, these polls and surveys do not provide
accurate predictions of actual behavior.. As Manninen and Evans (1985) note,
people are likely to want to respond positively to a hypothetical question about
donation because of the high value our society places on voluntarism and altruism.

In fact, family refusal to donate is a key, reason procurement efforts failure.
Nathan, et al. (1991) found that between 29 and 39 percent of the unrealized
potential donors were attributable to family refusal. Studies which have directly
examined potential donor families' willingness to donate find that between 23
percent and 63 percent of families consented to donation. According to a 1989
survey of OPO Directors, 38 percent of donors are lost due to family's refusal to
consent--the most frequent barrier to procurement.

Fewer studies have examined the situational factors affecting the procurement of
tissue and organs. These include the surroundings in which the request takes
place and the attitudes of hospital personnel approaching the family. Anecdotal
accounts claim that a brusque approach or one that consists of nothing more than
the mere invocation of a State or Federal requirement are unsuccessful in obtaining

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consent (Perkins, 1987). Others feel that confusion and equivocation regarding
the declaration of death is likely to ,result in confusion regarding the patient's
condition, decreasing the likelihood that the family will donate (Caplan, 1988;
Wikler and Weisbard, 1990). Asking in the presence of family and friends or in an
informal, quiet, private setting also appear to be dissociated with higher rates of
family consent (Simmons, 1987).

Recent data suggest that an .especially critical determinant of consent is the timing
of a request relative to the pronouncement of. death. There is reason to think that
there is a real need to delay requests for donation until after the family has
acknowledged the death of their loved one; In a retrospective study, University of
Kentucky researchers found that 53 of 93 families agreed to donate,.if they had
clearly understood that their loved one was dead before they were asked. When
the request for donation accompanied the notification. of death only 11 of 62
families consented to donation (Garrison, et. al.., forthcoming).

The identity of the person who interacts with the family may also be important.
Researchers at Vanderbilt Medical Center found that families were more receptive
to donation requests when they were asked by health care professionals with
whom they had a good rapport. Pre-existing factors such as the requestor's
professional background and training, race, and personal characteristics may also
influence the effectiveness of requests for donation.

Some have argued that organ procurement agency personnel, because of their
greater expertise and interest, are more likely to obtain family consent (Prottas,
1990). Others feel that the mpst important determinants of consent are social.
demographic factors or the circumstances surrounding the patient's death.
Unfortunately, there is no systematic data concerning the factors associated with
family consent.

Little is known about why families refuse to donate. Their refusal may reflect a
conscious rejection of altruism and voluntarism. On the other hand, families'
refusal may be the result of inadequate communication and misunderstanding.
There is some evidence that many families who refused, when approached long
after the patient's death, had changed their minds and wish they had donated.

Procurement of organs and OPO contacts

After the family consents to donation, care must be taken to support the heart
beating cadaver until solid organs can be retrieved. A recent British study revealed
that a significant percentage of organs were lost because the patient's heart
stopped before organs could be procured. It is not clear what factors, financial or
otherwise, influence a hospital's decision to institute a brain death protocol.

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There are currently 69 HCFA-certified organ procurement organizations ,in the
United States. Individual OPO rates of cadaver organ procurement range from a
low of 5.6 donors per million to a.high of 32.5 per million. .There is little
explanation for these differences in OPO performance (Nathan and, Jarrell, 1991).

There is some evidence available that hospital personnel.historical$ have been
uncertain about exactly which OPO to contact regarding procurement. As the
number of OPOs has consolidated, this problem is decreasing at least in some parts
of the country. However, hospital personnel.still report confusion in deciding who
to contact among organ, cornea, skin, and other kinds of tissue banks. Moreover,
their confusion is increased by variations in the eligibility standards used by these
agencies. In some parts of the United States agencies do not do a good job of
referring potential donors among themselves.

Another source of complaint by hospital personnel and some donor families is that
OPOs and tissue banks do not always do a good job of follow-up to report on what
happened to donated organs and tissues. While many OPOs and tissue banks
insist that letters and other contacts are made to let those involved in donor
identification and maintenance know the results of their efforts there is at least a
groundswell of anecdotal reporting that says these attempts are not effective.

Clearly, each of the steps in the donation sequence can be impeded or derailed by
many different factors. While the opportunities for change are numerous, the risk
of unintentionally harming or compromising the requisite sequence of events is
high.

The lmoact of Required Reauest/Routine lnquirv Leaislation

One of the most significant attempts to modify public policy on organ and tissue
donation during the past 10 years has been the creation of State and Federal laws
mandating hospital personnel to make requests. This policy, while respectful of
the value base of donation, decreases the autonomy and freedom afforded health
care professionals in the hope that b.y asking for organs and tissue more
voluntarism and altruism will be forthcoming.

Unfortunately, little data exist documenting the effect of this public policy on the
procurement process. In part this is a function of the fact that organ and tissue
procurement do not exist in a vacuum. A variety of other changes including shifts
in the organization and number of organ procurement agencies, changes in laws
governing drinking and seatbelt use, gun control measures, the proliferation of
emergency services, and the rise of the AIDS epidemic makes it difficult to analyze
the specific impact of a required request policy. In part, the lack of study is a

214


function of the fact that the laws. are so new that it will take time to see their
impa.ct.

Capian and Welvang (1989). polled health departments; eye banks, organ
procurement agencies, and hospitals in the first 10 States to pass required requ.est
laws. While most reported increases of 20 percent or more in the number. of
cornea, skin, and bone donors since the enactment of required request -laws, the
increase was still substantially less than might have been expected based on the
estimates of eligible donors. Organ donation increased 10 to 20 percent in four
States surveyed, while in the remainder, the number of donors was constant or
decreased. The reasons for this disappointing response varied from `poor
compliance, to the absence of formal training programs, to problems in developing
a workable method to monitor requests and donations.

Data from individual States on the impact of required request policies is quite
varied. New York has some information available because its law required the
State health department to report to the legislature on the effects of required
request by July 1987. In 1986, heart donations increased by 94 percent, livers by
96 percent, and.kidneys by 23 percent (Miller, 1991). There was a 58 percent
increase in eye donors and skin availability increased by 180 percent (Miller,
1991). Oregon also reported dramatic -increases in cornea, bone, and skin donors
and a slight increase in organ donors during this same period.

The State of Ohio has attempted to monitor the impact of its required request law.
Organ donation in Ohio increased nearly 50 percent during the first 6 months the
law was in effect. However in subsequent years donation levels remained
stagnant. In 1989, the third year of required request, a serious effort by the health
department to enforce compliance' by hospitals resulted in a 24 percent increase in
the number of livers, a 30 percent increase in kidneys, and a 74 percent increase in
cornea donors (Edwards, 199 1).

In other areas the data is more discouraging. Both Los Angeles and San Francisco
reported temporary increases in referral following the passage of required request.
laws but the number of donors stayed the same. In Tennessee, the total donor
referrals increased in the year following implementation of required request laws
but fell to pre-required request levels over the next year. New Jersey's enactment
of. a strong required request law did not result in a statistically significant change in
organ procurement. Although there was a large increase in the number of
referrals, the number of families consenting to donation decreased. Minnesota saw
a rapid increase in cornea and skin donors in the month in which the State's
required request laws went into effect, but a negligible impact on organs.

The reasons required request laws have not fulfilled expectations are not well
understood. With rare exceptions, the majority of studies have not empirically

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examined the problems of donor procurement as a process constituting several
steps, each of which is affected by structural and organizational variables as well
as by health care professionals attitudes. Assessments of the policy have tended
to focus almost exclusively on organ donations to the exclusion of tissue
donations.

Probably the critical factor.behind the failure to obtain an immediate response to
the creation of State and Federal laws was the poor record`of hospital compliance
with those laws (Capian and Welvang, 1989; Caplan and Virnig, 1990). In th.e
past year there is some evidence that more hospitals are beginning to comply with
the new public policy and that more health care professionals are asking about
donation. This is born out by the latest figures from the AOPO and' UNOS which
show significant increases in the number of organs available during the' past year
(Caplan, 1991 I.

Localism

Some transplant surgeons and OPO officials argue against creating a single national
list for allocating tissues and organs, claiming that people donate with the intent
that the donation will benefit someone from their region or State (Edwards, 1991).
A preference for localism and regionalism is often cited by transplant surgeons and
procurement personnel from States which are net exporters of organs and tissues
on the grounds that a `neighbors first' policy is of concern to donors. Yet there is
little empirical evidence to support the claim that localism, while important to
transplant centers, is important to donors or donor families.

OPOs and tissue banks

Since organ procurement agencies began to operate on a large scale about 15
years ago, there have been two distinct organizational forms: .hospitaI-based and
independent. For most of the history of organ procurement, hospital-based OPOs
have predominated. As late as l-982, two-thirds of OPOs were hospital-based.
These hospital-based OPOs are usually located in a Department of Surgery, or
Division of Transplantation, are generally under the direct supervision of the
transplant surgeon, and are often staffed by nurses previously employed at the
hospital's transplant service. Hospital-based OPOs generally tend to serve only the
transplant hospitals in which they are located whereas, free-standing OPOs are
separately incorporated entities providing only procurement services. They also
serve several hospitals. Independent OPOs are larger than hospital-based ones and
have more full-time as opposed to part-time employees. They have been a more
effective segment of the organ procurement system (Prottas, 1989).

Nonetheless, larger does not necessarily mean more efficient. The 16 largest
OPOs, servicing 85 million people, had retrieval rates of less than 5 donors per

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million and 13 other OPOs covering 4 million inhabitants had retrieval rates of 10
donors per million. The national average donor retrieval rate was 16 donors per.
million. The most s.uccessful procurement organizations in the nation had retrieval
rates of 30 to 35 donors per million (Nathan and Jarrell, 1991). These were
generally small OPOs covering populations of a few million people, and operating
almost exclusively at the local community level in close contact with their
transplant centers (Rapaport and Anaise, 1991).

The National Organ Transplant Act of 1984 was the first federal legislation
designed to organize; control, and establish accountability in organ donation and
transplantation. This legislation mandated the formation of the Organ Procurement
and Transplantation Network (OPTN). A T&k Force was commissioned to examine
and report on pressing issues in the field of transplantation, such a& networking for
organ sharing, education, procurement, research, and patient access to transplant
services (Rogers, 1989). The Act established a grant program for the
establishment, initial operation, and expansion of qualified organ procurement
organizations. The Act requires OPOs to establish procurement agreements with
hospitals located within their service areas. Professional responsibilities of OPOs
include public and professional education, procurement, and preservation of
donated organs, allocation of donated organs according to established protocol,
and coordination of activity with other transplant programs (Rodgers, 1989).

The United States operates the largest organ procurement system in the world.
Medicare has been the main source of financing for OPOs since the passage of the
End-stage Renal Disease Act in 1972. There are currently 69 federally funded,
HCFA-certified organ procurement organizations, a significantly smaller number
than the 90 which existed in 1985; Fifty OPOs are independent free-standing
organizations; the rest are hospital-based. All OPOs are non-profit organizations or
part of not-for-profit organizations or hospitals. With minor exceptions, every
region in the United States is served by an OPO (Abt Associates, 1990) since there
are OPO arrangements with over 4500 community hospitals. In 1988, the number
of procurement organizations decreased for the first time as. a result of Federal
pressure to consolidate a number of these agencies. Many of these OPOs have
been restructured as free-standing entities (Prottas, 1989).

Federal law does not mandate the relationships which should exist among hospitals
and health care professionals and procurement organizations, namely, OPOs, tissue
banks, and eye banks. Although no formal survey has ever been conducted that
systematically examines this question, anecdotal evidence supports the claim that
the structure and nature of these relationships varies geographically.

The Omnibus Budget Reconciliation Act of 1986 (OBRA) was another step in the
process of institutionalizing, refining, and regulating organ donation and
transplantation, inclu,ding the relationship between the potential source of body

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parts (i.e., the. hospitals) and the agents of procurement and distributi0.n (Le., the
OPOs). OBRA, institut/onalizing required request, mandated that hospital's
receiving Medicare and Medicaid must establish written protocols that reasonably
assured that families of potential donors will be offered the option of donation, and
that the appropriate regional OPO will be notified of all potential donors.

Moreover, institutions that perform transplant procedures must participate in and
abide by the rules of UNOS, a private, nonprofit, national organ sharing
organization authorized by the OPTN to facilitate the equitable distribution of
organs. For OPOs to receive reimbursement for costs associated with organ
recovery, the organization must be certified as qualified by the Secretary of Health
and Human Services. Thus, OPOs are required to participate in UNOS and to abide
by its policies. Only one OPO per service area is designated by.the secretary.
Failure to comply with the statute means revocation of Medicare funding (Rodgers,
1989). This has encouraged hospitals and OPOs to work together to procure solid
organs.

During the late 1970~ and early 198Os, concern increased over the allocation
policies used to distribute donated organs.  UNOS was awarded the contract to
fulfill the goals of OPTN, and today, develops the national policies of organ
distribution.  All potential organ recipients must be listed on the UNOS computer.
Organs are shared based upon a point system. The potential recipient with the
highest point rating will receive an available organ. The current point system tends
to emphasize the importance of need and medical urgency over prognosis
post-transplant.

There is no evidence that the general public is aware of the standardization of
allocation policies. This is a serious problem given the frequent concerns of
prospective donors and the general public about the degree to which the allocation
of organs and tissues is fair.

One significant difference between organ and tissue procurement organizations is
that the latter may be for-profit. The National Organ Transplant Act requires that
OPOs receiving Medicare funding be non-profits. The Act prohibits the sale of any
human organs but does not address tissue.

Most for-profit tissue banks are involved in the preparation, storage, and shipping
of bone implants or heart valve implants. The preparation of bone for medical use
requires expensive equipment and highly trained personnel and such tissue banks
require considerable capital outlay. Non-profit agencies.are less able to provide
these services. As a result they are more likely to have to compete for these
particular tissues with for-profit organizations. With the exception of bone
marrow, Congress is not extending Medicare funding to tissue banking activities.
As a result, for-profit tissue banks face little competition (Rodgers, 1989).

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Much of the controversy surrounding for-profit tissue banking is ethical in nature.
Donors and donor families voluntarily give their anatomical gifts. Most are
stimulated by altruistic feelings, the belief that a part of them lives on or the death
of a loved one is not in vain,. It is questionable how these individuals would accept
the knowledge that their gift was resold at a profit to somebody else. Public anger
over stories (Gaul, 1990) detailing the ways in which voluntarily donated whole
blood is resold and reprocessed into saleable products suggest that the reaction
would not generally be positive.

However, until non-profit organizations provide equal services, for-profit tissue
banks seem secure, provided they do not violate the Federal prohibition on the
purchase of organs or any applicable State laws dealing with the sale of organs.
The reality is that hospitals and surgeons demand these tissues in trehting their
patients and, to date, the for-profit sector of tissue banking has been the only
sector capable of meeting the demand.

It is also true that organ distribution remains heavily controlled by the individual
transplant centers. Only a few years ago, transplant centers that could not use an
organ they retrieved would, on the basis of private conversations, send that organ
to another center. That center might be in the same State, another State, or for
that matter, in another country. Local discretion over distribution of organs is no
longer allowed. The OPTN requires that centers and OPOs have formally stated
criteria governing the distribution of organs and that OPOs use the national organ
center for distributing any organs they cannot use within their own service areas.

Through the OPTN's local use policy, the 250 transplant centers are. allowed to
retain almost all the organs they have retrieved. They enter into cooperative
agreements with an OPO or other centers only at their own volition. If they wish,
they can make arrangements concerning the distribution of organs with the donor
hospital and/or an OPO in other service areas. The distribution system is also
localized in the sense that most organs procured in a service area never leave that
area. These arrangements represent institutional agreements between hospitals
and OPOs. However, we know little about the key relationship; that is, the
interface between OPOs and the health care professionals upon whom the OPOs
depend to identify potential donors.

Many OPOs make themselves visible to hospital personnel through providing
educational "in-services" with hospital staff, especially nurses. Many hospitals
now have standing committees or designated staff who are specially trained to
deal with donation issues. To make all hospital personnel aware of the OPOs'
activities, hospitals often post stickers, posters and incorporate information about
the donation process into their procedural manuals. Hospitals also often enter into
voluntary agreements with OPO staff. For example, some hospitals have
volunteered to inform their local OPOs about every hospital death. The OBRA Act

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of 1986 and the passage of State laws which required that hospitals formulate and
carry out a required request protocol have no,doubt acted as catalysts for these
agreements.

Communication among OPOs, tissue banks, and eye banks varies according to
locale. There is very little communication between those involved in the newly
created National Marrow Donor Program and other organ and tissue organizations.

In certain regions, there are close relationships between OPOs and tissue banks,
with the organizations working as a team. For instance, a central office might take
all calls concerning donation and advise on eligi,bility for solid organs., tissues, and
corneas. In other regions, these organizations are more atomized. Hospitals may
find themselves dealing with three, and sometimes more, organizations. The
advantages or disadvantages of a unitary vs. individual procurement system are
unknown.

Exoerience of Other Nations with Oraan and Tissue Donation.

Most nations in the western world have made a strong commitment to the same
moral foundation of cadaver organ transplantation, voluntarism and altruism, as
has the United States. The system of donation in Canada, Holland, the United
Kingdom, Australia and nearly all of Central and South America is very similar to
that which exists in the United States.

Some nations which operate with a voluntaristic, altruistic values foundation and
an opt-in, donor card approach to cadaver donation have resisted the formal
recognition of brain death, i.e., Japan, Denmark. However some others with
similar dominant value frameworks have recently enacted brain death laws or
witnessed their courts affirm this definition i.e., Israel, Sweden.

Some nations have decided to pursue an opt-out policy of routine salvage or
presumed consent. France enacted a presumed consent law in 1976. Austria has
had what amounts to a routine salvage policy for nearly 100 years with a
reaffirmation of this policy taking place in 1988. Belgium moved to institute a
presumed consent policy in 1988. Also in 1988, Singapore instituted a donation
policy wherein those willing to serve as donors would receive priority of access to
transplants as against those who were not, for whatever reason, willing to list
themselves 3s potential cadaver donors.

Following enactment of its presumed consent law, France saw a small increase in
kidney donation but most of the increase has been used to decrease the number of
kidney transplants involving living donors so there has been no overall increase in
transplant `rates. Austria saw a significant increase in kidney availability in the year

220


following enactment of its law but organ availability fell significantly in 1990
                                              
(Eurotransplant, 1991).

A few nations permit financial incentives for living donors including India, the
Pnilippines, and Brazil. No nation appears to allow.financial rewards with respect
to cadaver donation though there have been recent reports of payment for both
live and cadaver kidneys emanating from China, Haiti, and. Hong Kong (Crosette,
New York Times; 1991).

Distribution of organs and some tissues is handled on a regional basis in Europe.
The Benelux countries and Germany cooperate with one another through the
Eurotransplant Foundation. A similar regional group exists for Scandinavia.

Most European countries do not have specialized personnel serving as organ or
tissue procurement specialists (Prottas, 1984). But this may be changing as at
least some countries, i.e., Sweden, are moving toward the creation of organ and
tissue procurement specialists.

Conclusions and ODtion3

lncieasing Public Knowledge and Encouraging Altruism

Polls indicate many Americans still have reservations about the effect of organ and
tissue donation on a cadaver. Public education efforts co.uld be mounted which
specifically address concerns about mutilation and destruction of the cadaver.
Similarly, educational campaigns could be undertaken to assuage public concerns
that prospective donors will not receive aggressive treatment and that organs and
tissues are fairly and equitably distributed among those in need. These efforts
need to involve the mass media which, in recent years, has conveyed erroneous
and frightening images to the public about organ donation in a number of prime
time, popular television programs and movies. And continuing efforts need to be
undertaken to inform the public about the brain death standard and the tests used
to establish that brain death has occurred.

Donor Cards

A variety of strategies are available for trying to increase the percentage of
Americans who carry donor cards. All persons applying for licenses could be
required to select a donor status as a condition of licensure. Or all persons
admitted to hospitals or nursing homes could routinely be asked about their donor
status as part of the Patient Self Determination Act of 1990. State provisions
requiring two witnesses to validate a donor card could be modified. Videotapes

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and educational materials could be created which target high school and college
age persons about the importance of donor cards.

OPO and Tissue Banks

Efforts could be made to help consolidate the relatidnships that exist between
procurement organizations and hospitals. If a multiplicity of procurement
organizations.proves confusing to hospital personnel in terms of understanding
donor eligibility or whom to call for help, then OPOs could be encouraged to create
`one stop' hot lines for contacting all procurement organizations through a single
telephone number. The need for clear, unambiguous, current and uniform national
eligibility standards must be addressed to see whether uncertainty and confusion
about OPO and tissue bank standards can be reduced.             s

There is some evidence available (Caplan and Virnig, 1990) that hospital
administrators are poorly informed about organ and tissue donation laws,
regulations, and policies. Moreover, administrative responsibility for monitoring
institutional performance with respect to donation is not always clearly assigned
and is not routinely a part of licensure and accreditation requirements in many
areas.

`It is important that competition among organ and tissue banks and between tissue
banks be kept to a minimum. Continuing attention needs to be paid to the domain
of tissue procurement especially in light of the tension that exists in some parts of
the country between profit and not-for profit tissue banks.

OPOs and tissue banks need to be encouraged to focus their educational efforts on
donor identification and the proper techniques for making requests. In their
educational efforts, some OPOs and tissue banks do not attend to the early stages
of identification, eligibility, and requests to families in ways that reflect current
empirical studies about how best to handle these issues.

OPOs and tissue banks need to understand the importance of adequate feedback
to both hospital personnel, administrators, and donor families. These organizations
must also realize that the general public does not distinguish between tissue and
organ transplantation (they are seen as the same) so that inappropriate or negligent
behavior on the part of one procurement organization adversely reflects upon all
others.

Expanding the Pool of Cadaver Donors

One possible strategy for increasing the number of organs and tissues available is
to increase the size of the cadaver donor pool. This could by done by instituting
efforts to improve the identification of brain dead patients. A variety of studies

222


show that between a third and two-thirds of eligibie patients either are not
identified as eligible, or their families are not approached for donation. Strenuous
educational efforts as well as monitoring could be instituted in certain key hospitals
in order to make sure that all potential brain dead donors are identified.

Efforts could be made to identify institutions where brain dead patients are likely to
be. There is still much controversy over which hospitals and trauma centers are
likely to see the. largest number of potential donors. Similarly it is not known
which sorts of institutions are most likely to have potential tissue donors.
Identifying such institutions would help focus .educational and training efforts
concerning donor identification, interactions with families, and contacts with OPOs
and tissue banks.

Unrealized potential donors are disproportionately admitted to internal medical
services, have long lengths of stay, and tend to be older. These facts emphasize
the importance of educating internists regarding eligibility as well as neurologists
and neurosurgeons.

A recent study by a team of Welsh physicians suggests that it may be advisable to
think about the elective use of mechanical ventilation solely to permit organ
donation in persons who otherwise would have died. -In persons dying from
cerebrovascular accidents where life-support has not been used it would be
possible to institute a policy to ask families for their consent to the use of
mechanical ventilation in order to make organ donation possible.

Another strategy for expanding the cadaver donor pool would be to support
research on allowing the use of organs from persons who arrive at hospitals DOA.
It may be possible to develop preservation techniques that allow organs to be
salvaged in vivo. It will also be necessary to develop appropriate public policy and
consent procedures to accompany this sort of strategy.

It may be possible to make more efficient use of the cadaver donor pool than is
currently the case. For example, if waiting list allocation rules were to place less
emphasis on severity of illness and waiting time and more on likely prognosis, the
same number of cadaver organs might be able to save more lives. Similarly, if
more selective criteria were used in determining eligibility for transplants including
discouraging or prohibiting retransplantation or, in some cases, the use of assist
devices and bridging technologies, overall survival rates post-transplant might be
increased.

Improving Consent Rates

During the last 2 years there has been increasing evidence that families frequently
refuse health care professionals' requests to donate. Despite public opinion polls

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showing widespread support for organ donation, family, refusal is a. barrier to
procurement. It is not clear whether this is a failure of voluntarism or a iesult of
health care professionals insensitively or inadequate explanations of the reasons for
organ donation. Without adequate empirical-information, it is impossible to
determine whether the appropriate public policy response is more training for
health care professionals, more public education, changes in the timing, setting or
identity of those making requests, or abandoning voluntarism in favor of a policy
that is more responsive to self-interest. .

Recent revisions in the UAGA suggest that hospitals ask all patients upon
admission about their organ donor status. Some States have enacted this
requirement into law. The Patient Self Determination Act of 1990. mandates that
all prospective patients be appraised of the importance of having a living will and
many of the standard forms of this document contain a provision regarding organ
donation. These steps may increase consent rates but there is some fear among
organ and tissue procurement professionals that asking at the time of hospital
admission is as likely to produce refusals as it is prior consent (personal
communication, 19911..

Health care professionals' attitudes about organ and tissue transplantation as well
as brain death need to be assessed and, if necessary, enhanced. This may
facilitate more enthusiastic compliance with existing State and Federal laws
regarding requests. Stronger efforts are needed to ensure compliance with existing
routine inquiry and required request laws prior to concluding that existing policies
are inadequate. Unfortunately, most State laws contain. neither provisions nor
monies to assure adequate compliance. Developing adequate methods of quality
assurance is an essential aspect of any public policy. We are quite encouraged by
efforts such as Nathan et al. to develop a computerized program which allows
OPOs to track hospital performance, identify outliers, and then investigate the
reasons for procurement problems.

Without clear data about the impediments to procurement, one cannot be
absolutely confidant which changes will improve the system. To date, studies of
donation have been piecemeal, focusing on only one part of the entire process.
Most studies have relied strictly on chart review or public opinion polls. The few
reports about actual consents or refusals rely on nonsystematic observations or
anecdotal reports. Only systematic data regarding the organizations, health care
professionals, and situational factors affecting organ/tissue donation will provide
the information necessary to improve the procurement process. It is essential that
further research be conducted on families who did and did not agree to donation to
better understand their motives, knowledge, fears, and feelings.

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Policy Changes--required referral



Prottas and others have suggested requiring that OPOs be called about all deaths.
This might increase. identification of eligible donors and ensure that the health care
professionals who discuss the issues are adequately trained to do so. Information
regarding how such a proposal would work or evidence regarding its feasibility
should be required prior to this proposal's adoption. Would the organ procurement
agencies be called about all patients admitted to the hospital? To an intensive care
unit? Who would do the calling? What role should OPOs have in managing the
care of the "near brain-dead?" Would such a screening process be cost or time
effective?

The Use of Financial Incentives to Encourage Dqnations

There are a host of ideas about the ways in which families might be encouraged to
donate by appeals to self-interest. These inc1ud.e the payment of funeral expenses,
direct cash payments, discounts on estate taxes, or tax deductions to surviving
family members (Cohen, 1990, Peters, 1,991). .All such proposals need to be
closely evaluated on both empirical and philosophical grounds. Putting aside the
ethical concerns that financial incentives may raise (Pellegrino, 1991), there is no
empirical evidence that families will be more willing to donate if offered incentives
such as burial cost. Post hoc surveys of families who have agreed to donate or
nation-wide Gallup polls of what people say they will do in the abstract are not
predictive of what families will actually do when faced with these decisions. Nor
is there any empirical evidence to support the claim that a significant segment of
the American public either wants or expects financial incentives as a condition of
donation.

Prior to accepting any new proposals the Federal government could evaluate their
likely impact on donation through demonstration projects. Before changing our
deeply entrenched, national public policy regarding cadaver procurement, strong
empirical evidence is needed to show that these proposals will increase the number
of transplantable organs.

Presumed Consent and Routine Salvage

It may be possible to persuade Americans that it is more reasonable to presume a
willingness to donate and subsequently to construct public policy so that the
burden of proof falls upon those who wish to `opt out' of this presumption.
However, it is important to keep in mind that the nations which have moved
toward this type of public policy have encountered strong resistance from health
care professionals who are reluctant to take organs without routinely asking the
family about their willingness to donate. It is also important to keep in mind that

225


the increases in organ donation as reflected in kidney ,donations, have not been
especially impressive in France or ,Austria--two nations with long-standing public
policies of presumed consent.

Alternative Sources of Organs and Tissues to Cadavers

The demand for transplants will outstrip our ability to procure cadaver organs. The
number of heart beating cadavers is limited. Given the increasing success of organ
transplantation, it is likely that the number of organs needed will always be greater
than the number of potentially or even possibly available cadavers; It is therefore
imperative that the transplant community and public officials begin discussing
alternatives to cadaver donation.

There has been some discussion of broadening the definition of, or the criteria used
to determine, death. For example, some have suggested permitting the use of
different criteria for determining brain death in anencephalic infants in order to
facilitate their use as organ donors (Kaufman, ,1988). Others suggest that the
concept of donor be expanded to include persons in permanent vegetative states
(Cranford, 1989).

Increased reliance on living donors may be one way to respond to the shortage of
cadaver organs. Nearly one-third of all kidneys transplanted in the United States
are obtained from living donors. Some programs have turned to unrelated persons
as possible sources of kidneys. Transplant surgeons have also obtained bone
marrow, lobes of liver and lung, and segments of pancreas from living donors. The
use of living donors, especially those not capable of giving informed consent,
raises many complex ethical questions that will have to be addressed if live
donation is to expand as an alternative to cadaver sources.

Another strategy to increase the pool of organs and tissues available is to turn to
animal sources. There are obvious ethical, psychosocial, and public policy issues
involved in pursuing this alternative. Many Americans believe that it would be
immoral to kill animals, particularly primates, for the sole purpose of harvesting
their organs. Others note that the use of animals is currently so experimental that
informed consent procedures must be especially rigorous and peer review
exceedingly conscientious before any potential recipients can be recruited.

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CCNCLUSION

The scarce supply of transplantable organs and tissues is the greatest challenge
facing transplantation professionals as well as those in need of transplants.
Unfortunately, changes in public policy or public education are not going to solve
the problem of donor scarcity. For the foreseeable future, modest increases in the
supply of human cadaver organs and tissues will not meet increases in the
demand.

However, we must continue efforts directed toward increasing the number of
cadaver organs and tissues that are available for transplant. Much .public and
professional attention has, in recent years;focused on the prospects for
dramatically changing existing public policy on obtaining organs and tissues. Some
believe that the United States either ought to permit a market of some sort in body
parts or should move toward a system of presumed consent where those who do
not wish to make their organs and tissues available would have to make their
objections known. However, public support and trust in the system of
procurement and distribution of organs and tissues plus deeply held values within
American society make radical change unlikely. Refusal rates to requests to
donate are in the 60 to .70 percent range or worse, and many major religious
groups insist that cadaver donation be based on altruistic choice. These realities
show that the prospect is poor for a shift to a public policy which has as its sole
moral concern an increase in the supply of cadaver organs and tissues.

Moreover, many aspects of the existing policy (permitting cadaver donation only by
a voluntary written directive from the deceased or consent of their next of kin or
guardian) can and should be examined before there is any attempt to drastically
alter that policy. The public needs more education concerning the concept of brain
death and the realities of organ distribution in order to persuade more persons to
donate. Health care professionals need to exert greater efforts to routinely identify
prospective donors and to make requests of their families. Medical examiners,
coroners, and funeral directors need to become more actively involved in matters
pertaining to donation. Organ and tissue procurement agencies must try to more
closely coordinate their efforts in both education and procurement. Government
and professional societies need to make sure that health care professionals
understand their obligations and responsibilities with respect to offering the option
of donation and in making sure that those gifts which are obtained are
acknowledged and handled with respect and fairness.

Scarcity is likely to be a reality in transplantation for the rest of this century. The
steps that are taken to minimize the problem must be cons&tent with the values of
autonomy, altruism, and voluntarism which have dominated American attitudes
toward the procurement of cadaver organs and tissues since the beginning of this
century.

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Nathan HM, Jarrell BE, Broznik 8, Kochik R., et. al. Estimation and characterization of the potential
renal organ donor pool in Pennsylvania. Transolantation, 5 1, 1, 199 la: 142-49,

Nathan HM, Jarrell BE. National multi-center potential donor study. Presented to A HCPR, March ?8,
199 lb.

Nolan BE, Spanos NP. Psychosocial variables associated with willingness to donate organs.
Canadian Medical Association Journal 1989; ?4/:2 7-32.

Overcast TD, Evans RW, Bowen LE, et. al. Problems in the identification of potential organ donors.
JAMA, 251, 12, 1984: 1559-1562.

Overcast TD. Legal aspects of death and informed consent in organ Transplantation.  In Human
Organ Transplantation, eds., DH Cowan, J Kantorowitz, J Moskowitz, PH Rheinstein, Ann Arbor,
Ml; Health Administration Press, 1987: 55-80.

Partnership for OrQan Donation, Inc., Solving the Organ Donor Shortage, 7990.

Perkins KA. The shortage of cadaver donor organs for transplantation: can psychology help?
American Psvcholoaist, 42, 1987: 92 I-30.

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Peters TG. Life or death: the issue of payment in cadaveric organ donation. JAMA, 265,
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Pius Xl. Casti Connubi, A.A.S., XXII, 1930: 33-4.

Prottas JL. Encouraging altruism: public attitudes and the marketing of organ donation. Milbank
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November 19, 1984.

Prottas JL. Shifting responsibilities in organ procurement: a plan for routine referral. JAMA, 260, 6,
1988: 832-3.

Prottas JL. Organization of American organ procurement. Journal of Health Policv, Politics and
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Prottas JM, Batten HL. Attitudes and incentives in organ procurement. Report to Health Care
Financing Administration, 1986.

Ramsey P. The patient as person. New Haven; Yale, 1970.

Robinette MA, Stiller CR. Summary of task force frndings. Transolantation Proceedinos, 17, 3,
1985: 9- 12.

Robbins RA. Signing an organ donor card: psychological factors. Death Studies, 14, 1990: 2 19-
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Rodgers St3. Legal framework for organ donation and transplantation. Nursino Clinics of North
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220522 10.

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INCREASING DONATION BY `FOCUSING ON THE HEALTH CARE
     ENVIRONMENT: PROFESSIONAL EDUCATION

Charles Hoste tter, M.D., M.P.H.
Ph yfiis Weber, R.N.

Introduction

The past two decades have seen remarkable advances in the field of organ
transplantation in the United States and world-wide. For example, data for the
United States show that heart transplants increased from a total of. 193 in 1382 to
2085 in 1990; liver transplants increased from 62 to 2656 and pancreas
transplants increased from 38 to 543 during the same time period. Kidney
transplants, which have a much longer history, increased from 5358 in 1982 to
9560 in 1990 (1).

In addition to increasing numbers of transplant procedures, the patient and graft
survival rates are increasing with improved methods of organ preservation,
matching procedures, and immunosuppressive therapy, particularly Cyclosporine.
For. example, 1 -year graft survival following a heart transplant in the pre-
Cycl'osporine era was 62 percent whereas in 1383 the l-year graft survival was 82
percent (2). Even greater increases in survival have been experienced in tiver
transplantation.

Clearly, organ transplantation has increased not only the length of life, but also the
quality and productivity of life ftir many individuals. Yet the limiting factor in organ
transplantation is the dearth of donor organs. As of March 1991, 18,200 patients
were waiting for kidney transplants, 1960 were awaiting heart transplants, 1340
were awaiting liver transplants, and over 500 were awaiting pancreas
transplants (3).

To get a sense of the potential donor pool, approximately 2.5 million people die
annually in the United States, and of this number, an estimated 20,000 would
qualify as medically appropriate donors (4). Yet, in 1990, only 4300 of these
deaths actually resulted in organ donation (1). In the previous 3 years, the number
of actual donors appeared to plateau at 4000. At the same time, approximately
25 percent of those patients waiting for extra-renal transplants die because an
appropriate donor is never identified. Close to 50 percent of children waiting for
extra-renal transplants die while waiting.

increased traffic safety statutes (i.e., required helmets for motorcyclists, required
seat belts, and child restraints), reduced number of alcohol impaired traffic
fatalities, and the HIV epidemic have been suggested as potential contributors to

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the plateau in numbers of donor organs expe,rienced in the late 1980s. Still, there
is a large discrepancy between the potential and actual donors in any given year.

Significant efforts have been made over the past several years to educate the
public as to the significance of organ transplantation. Gallup polls (5,6,7) indicate
that the majority of the public are aware of organ donation, but there has not been
a concomitant increase in organ donors.

An effective organ donation system relies upon a broad based alliance of health
care professionals and the general public. A positive attitude toward organ
donation among health care professionals will promote. a supportive hospital
environment for organ donation; an informed public who have discussed organ
donation with family members will be more likely to respond positively'when
approached about organ donation.

This paper will focus on the necessity of increasing the involvement of health care
professionals in the donation process: what role they should play; how their
personal attitudes influence organ donation; and what are possible methods of
eliciting greater support for organ donation. This is an area where little literature
has been published to date. However, what has been published provides us with
some guidance to certain interventions which may contribute to the enhancement
of organ donation rates.

The matter of organ donation raises complex emotional reactions for non-medical
people and for medically trained people as well. Dealing with the issue of donation
of organs forces us, as individuals, to confront our mortality, which is difficult for
most of us. For health care professionals, the situation is complicated by other
issues such as perceived liability considerations and a general discomfort with the
notion of approaching the family of a brain dead individual to encourage organ
donation (8).

There appear to be three main groups of health care professionals who may be
involved at some level with organ donation. First, there are those who are already
members of the transplant community, such as transplant physicians and
surgeons, clinical transplant coordinators, and organ procurement coordinators. Of
these health care professionals, the role of the organ procurement organizations'
(OPOs) staff, specifically the organ procurement coordinator, deserves particular
mention. These individuals receive specialized training in promoting organ donation
through public and professional education; approaching families of potential donors
about organ donation; managing the donor prior to organ recovery; and assisting
with the surgical removal of donated organs. These coordinators are employed by
federally designated organ procurement organizations which in all areas of the
country provide the link between transplant centers and hospitals which have
identified potential organ donors. Along with transplant surgeons and physicians,

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these health care professionals form`the front line of transplantation.
Unfortunately, -with the exception of the transplant literature, there are, few
references in medical literature about the services the organ procurement
organizations and their staffs provide for donor families and the staffs of hospitals
which refer potential donors. Generally, it is the,role of these health care
professionals to provide education about organ donation to key individuals within
the hospitals; to assist with hospital review, revision, and execution of policies and
procedures regarding organ donation; and to respond appropriately to hospital
initiated donor referral calls.

At the second tier are those professionals whose roles bring them into direct
contact with the transplant community. These include social workers, critical care
physicians and nurses, trauma physicians, neurosurgeons and neurologists. These
individuals, through increased knowledge and positive attitudes toward organ
donation and transplantation, could have a significant impact upon the rate of
organ donation. To encourage physician and nursing education and support, some
suggest that credentialing boards for the various medical and nursing specialties
should include questions related to organ donation and transplantation in their
written examinations as a means of raising the importance of the issue. Others
suggest that undergraduate medical and nursing curricula should include issues
related to organ donation and transplantation .(9).

There appears to be some agreement in the literature that the attitudes and
behaviors of physicians have great importance in influencing the rate of organ
donation (8,lO). Yet there are a number of factors whic.h cause physicians to be
less aggressive in seeking organ donations (8,lO). Nurses, in general, tend to be
more willing to actively participate in the process of seeking organ donations,
although there is a reluctance on their part to do so without the explicit support of
physicians (10).

The third group of professionals inclu.de clergy, morticians, medical examiners,
coroners, and attorneys whose roles, though not directly related to the organ
donation and transplantation process, place them in positions to significantly
influence individuals' attitudes and decisions related to organ donation.

How can we most effectively provide training to these myriad professional groups
which will better prepare them to use their respective roles to positively influence
the rate of organ donation? Clearly, each professional category requires an
approach which is tailored to its respective role in the process. It also must be
determined at which point and where or when in professional training the subject
should be introduced, or whether there should be a continuum of training activities.

How can we assess the effectiveness
term measures? Are there key issues
or do they vary from group to group?

of this training by immediate and more long
that must be addressed? Are they constant

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One thing which appears to be true is that health professionals' attitudes are not
unrelated to public attitudes. Therefore, we would expect that the greater the
awareness of the importance of organ donation and transplantation on the part of
the general public, the greater will be the interest on the part of the various related
professionals. Professional education cannot, therefore, be totally separated from
public education.

In the pages which follow, we examine the current literature related to professional
education and training in organ donation and transplantation. We look at what is
now being done, what has been done in the past, and what various.investigators
have suggested for future directions. From-this analysis, we attempt to identify
the key issues in professional education related to organ donation and
transplantation, and to formulate some proposed recommendations for
consideration.

Current State of ttie Art

Research efforts by transplant professionals have focused primarily on issues such
as management of immunosuppression, outcomes of transplants, etc. Some
studies have estimated the actual organ donor potential in the United States
(11 ,12). Continuing work is vital since it may provide a clearer picture of the
discrepancy between actual and potential organ donors. Closer examination of this
gap in similar settings may lead to further delineation of the specific barriers to
organ donation (11).

Several studies have been undertaken to examine personal attitudes.and
knowledge about organ donation a.mong health care professionals; attempts have
been made to correlate these attitudes and knowledge to successful organ
donation requests (13-15). Similar works have identified barriers in the organ
donation process and have made recommendations to correct these deficiencies
(8,161. These surveys begin to tell the story of the correlation between attitudes
and commitment and successful organ donation.

While these studies are important, little specific information exists regarding
successful components of professional.education programs. Two unpublished
surveys, one by Warmbrodt (17) for the National Task Force on Organ
Transplantation and another by Politoski (18) for the National Kidney Foundation,
have briefly summarized past activities related to professional education. In 1985,
the National Task Force studying the status of organ donation and transplantation
in the United States conducted a survey to determine ongoing professional
education effor.ts. Distributed to OPOs, voluntary health organizations,
professional associations that might be involved in organ donation and
transplantation, and professional transplant organizations, the results from the
respondents showed that almost all education about organ donation in the

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professional community was being done by organ procyrement organizations. The
OPOs which responded indicated that informal inservice education, combined with
occasional structured workshops and seminars, were the types of education they
most frequently employed. Only 7 percent of the OPOs specifically mentioned
medical staff presentations or grand rounds.

Sixty-seven percent of the OPOs surveyed indicated that they believed that
physicians (particularly neuroscience physicians) were the. audience least receptive
to their educational efforts. When queried as to how education efforts were
directed to a group that was not receptive, respondents were almost unanimous in
stating that only a physician, particularly a- transplant surgeon, couid enlist the
interest and cooperation of another physician. One-on-one physic.ian meetings
seemed to be the most useful forum for education.

Conversely, responding OPOs indicated that nurses were the most receptive
audience for professional education programs and, as assessed by the OPOs, were
already more knowledgeable about organ donation than other health care
professionals. Yet 81 percent of the OPOs' education programs were presented to
nurses, perhaps indicating that OPOs spend a great deal of time and effort
"preaching to the choir."

Only 18 percent of the professional education programs had measurable goals and
objectives. There was basically no consensus as to how to evaluate the success
of the programs, although an increase in hospital referrals following the programs
was mentioned frequently (17).

The National Kidney Foundation (NKF) study was conducted at the annual
convention of the American Association of Critical Care Nurses in 1988. This
study of fifty randomly selected nurses attempted to determine the effectiveness
of existing training programs and to jook at particular ways in which the National
Kidney Foundation could effectively motivate nurses to become involved in organ
donation. Seventy percent of the respondents of the NFK study had personally
participated in approaching families about organ donation. Of those who had
approached a family, 83 percent had received formal training related to donation
prior to their participation. Classroom instruction had been received by 46 percent
of all respondents; 83 percent of the training was conducted by an organ
procurement coordinator. Components of training programs were varied and
included at least one of the following: lecture, film/tape, discussion, literature, and
role-playing. Although most nurses who had participated in training programs felt
confident in being able to discuss donation with families, they related feelings of
apprehension and discomfort in this role (18). These findings suggest that current
education programs lack key components that would enable nurses to effectively
influence organ donation. Further investigation of these programs is warranted.

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Pervasive in the literature is an acute lack of knowledge of issues related to organ
donation and transplantation among health care professionals (9,16,19,20). In a
statement presented to the National ,Kidney ,and Urologic Diseases Advisory Board,
Dr. Patricia Adams stated that "in an era of remarkable public awareness and
unparalleled medical success, the medical profession itself is relatively uneducated
about the essentials and successes of this new therapy (organ transplantation) and
feels little general professional responsibility to procure.organs" (21).

In a 1986-87 joint SEOPF-UNOS Survey of Professional Attitudes Toward Organ
Donation and Transplantation (15) sent to' professional staff at 176 transplanting
hospitals in the United States, medical professionals manifested a positive attitude
toward organ donation. However, they demonstrated a striking lack .of knowledge
about social issues and epidemiologic facts of transplantation. Twenty-four
percent were unsure how brain death related to cardiopulmonary arrest,, and 13
percent thought that withdrawal of support from a brain dead patient constituted
mercy killing. Less than 20 percent knew the current graft survival rates for
kidney, heart, or liver transplant, and only 8 percent could approximate the number
of heart transplants performed in this country in 1385 (15).

Younger and associates (13) interviewed a sample of 135 physicians and nurses
likely to be involved in organ procurement in an effort to determine their
knowledge, personal concepts, and attitudes concerning brain death and organ
donation. Only 35 percent of the respondents- correctly identified the legal and
medical criteria for determining death. Most respondents (58 percent) did not
consistently use a clear description of brain death. Physicians in decision-making
roles tended to be much more knowledgeable about these issues than other health
care professionals, but the professionals' confusion about brain death criteria has
tremendous implications for their.involvement with organ donation. One-third of
the participants in this survey had participated in transplant education programs.
These individuals tended to be more knowledgeable about clinical and legal
matters, but their level of understanding about brain death did not correlate with
their having participated in such education programs.

A survey of medical and surgical residents at two large teaching hospitals
regarding their knowledge, attitudes, practices, and experience with organ donation
was conducted by Spital in 1989 (9). Thirty six percent of the respondents were
not sure how to recognize a potential donor and 34 percent were not sure who to
contact if a donor was identified.

In another survey of family practice residents from five midwestern training centers
(19) nearly one-half of the respondents stated that they knew very little about
organ donation and would not know how to initiate the process. There were
concerns related. to premature declaration of death, concern for family feelings, and
the cost-benefit ratio of transplantation. A majority of the respondents in both

238


surveys indicated strong personal support for organ donation. Lack of knowledge
of donation criteria, and other issues `expressed here, need to be addressed in order
to gain commitment from an already supportive population.

A large scale survey of ICU staff complemented by public and professional opinion
polls was conducted in England in 1987 (22). Like Gallup Polls conducted in the
United States, the majority of the public were support-ive of organ donation. When
queried as to whether the topic of organ donation had been discussed with their
general practitioner, only 2 percent responded positively, but over 50 percent
indicated willingness to donate organs. There was also overwhelming support for
organ donation among physicians, with no difference in attitudes between general
practitioners and hospital based specialists. Physician groups also agreed that
organ donation and transplantation should be given considerable prominence in
undergraduate medical training (22).

In this same survey, the intensive care staff were asked to indicate which of nine
different factors limited organ donation. These .factors included dislike of
increasing a relative's distress; reservations about brain death criteria; lack of
experienced clinicians familiar with brain death criteria; resentment about the time,
effort, and cost involved; lack of training in approaching families; adverse media
publicity; unfortunate experiences with transplant team members; lack of written
policies; and general distaste for procedures involving organ recovery. While no
one.factor was unanimously identified, the possibility of increasing a relative's
distress and lack of training in the approach to families both rated highly as
disincentives to organ donation. Nurses in particular felt that lack of training in
approaching families and lack of written policies hindered donation. (22).

Malecki and Hoffman (14) examined the level of discomfort regarding organ
donation among intensive care nurses and its effect on obtaining consent for organ
donation. Of 124 nurses who responded, 93 percent indicated that they were
aware of criteria for organ donation. Only 33 percent said they had ever been in a
position to approach a family for consent, and of these, only 23 percent actually
did approach a family. Of families who were approached by a nurse who had a
self-perception of confidence, 84 percent said yes, while 100 percent of the
families approached by "uncomfortable" nurses declined to donate,

A 1990 survey performed by Stark (20) to look at how attitudes of nurses affect
organ donation found that nurses were frequently the first health care
professionals to recognize potential donors, but only 65 percent of those surveyed
could correctly identify clear cut instances where patients were suitable potential
organ donors. Both physicians and nurses were overwhelmingly supportive of
donation, and families who were initially unsure of their decision eventually

239


consented to donation when the nurses and physicians appeared to favor it. In
this study of 26 potential donors, six families were not approached about donation,
with the main reason cited as "physician reluctance caused by fear of liability"

A recent study by Bidigare and Oermann (23) examined ICU nurses' attitudes
toward organ donation and the nurses' knowledge of org.an donor protocols. As in
previous studies, the majority (94 percent) of nurses were supporters of organ
donation. However, only 51 percent had made provisions`to donate their own
organs, and only 67 percent would encourage family members to do so. Race
seemed to correlate with nurses' attitudes, with Black and Asian nurses being less
supportive of organ donation than White nurses. However, the small numbers in
the survey made it impossible to draw any firm conclusions.     .

In this same study (23), nurses who had higher knowledge levels were more
positive toward organ donation as evidenced by.their personal decisions, their
willingness to influence families, and the degree to which they would choose to
participate in an organ recovery. The survey indicated that the nurses' knowledge
base increased with participation in the care of an organ donor and that this
expanded knowledge base enhanced positive attitudes toward donation (23).

Perhaps the most extensive look at attitudes of health care professionals was a
study performed by Prottas and Batten (8). Neurosurgeons, intensive care unit
nurses, directors of nursing, and hospital administrators were surveyed in order to
determine their level of commitment to donation, to identify how the groups
differed in their level of commitment, and to examine the `sources of those
differences. While neurosurgeons nearly unanimously indicated support for
donation on a personal level and said they were confident of the criteria to
determine brain death, nearly 60 percent said that there could be a conflict
between treating a patient whom they believe is dying and protecting organs which
could be transplanted. Many expressed reluctance to approach families about
donation; they were concerned about the time involved in the process and
potential legal liability. Neurosurgeons who believe that organ procurement is a
professional responsibility are less concerned about interactions with families, time
demands, and the threat of legal liability.

ICU nurses surveyed in this study (8) expressed support of organ donation with a
strong conviction that organ donation helps families through the grieving process.
Nurses expressed two areas of particular concern -- their lack of confidence in
physicians' awareness of accurate criteria needed for the determination of brain
death and the potential conflict between treating a .dying patient and management
of organ donation. The most supportive groups of ICU nurses were those found in
large ICUs in teaching hospitals. Many of these nurses who had been involved
with potential organ donors perceived physicians to be very supportive of donation.

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Combining physician support with nurses' belief that organ donation is a
professional responsibility tended to minimize apprehensions and conflicts of
nurses surveyed in .this study.

Prottas and Batten found hospital administrators supportive of organ donation in
general and most supportive when they believe the physicians in the hospital are
supportive. Directors of nursing demonstrated attitudes similar to nurses and other
hospital administrators (8).

Summary and Conclusions of Existing Studies

Almost exclusively, the responsibility for identification and referral of potential
organ donors falls to health care professionals employed in a hospital setting.
Surveys of these groups bear striking similarities. They are personally strong
advocates for organ donation, but the level of their commitment in this process is
quite dependent on their attitude of professional responsibility, the measure of
support for organ donation they perceive from their peers and other health care
professionals, and their knowledge of the process. Unfortunately, survey data
indicate that knowledge of the process is sorely lacking. Health care professionals
are relatively unaware of criteria for organ donation and how to make a referral (3,
19). They have significant concerns regarding potential conflicts of interest,
liability issues (20), family responses to requests for organ donation, cost-benefit
considerations (19), and perceived commitment of personal time and energy
required of them during the donation process (8). Among all groups, physician
support for organ donation appears to be the most critical factor, so these issues
most certainly need to be addressed `in professional education in order to elicit
greater cooperation and commitment to organ donation.

    Current Practice3
Organ Procurement Organizations

Organ procurement organizations recruit employees who for the most part have
health care professional backgrounds. Most are nurses with critical care
experience but who frequently- come to the organization without prior experience
in organ donation. In addition to on-the-job training, many organ procurement
organizations send new employees to a l-week training program conducted twice
a year by the North American Transplant Coordinators Organization (NATCO).
Another 4-day workshop on developing skills to approach families about donation,
and teaching these skills to others is also highly recommended by many organ
procurement organizations. This particular workshop has been conducted at least
annually by Margaret Verble and Judy Worth.

Organ procurement organizations' staff spend considerable time providing public
and health care professional education about donation. Again, little data is

241


available regarding the successful components of these programs, specific, content,
to whom they are directed, or how to measure their effectiveness.

In an attempt to systematically solve the organ donor shortage, a 2-year research-
based demonstration project has been initiated with ,four. organ procurement
organizations. The project is directed by the Partnership for Organ Donation. It is
the belief of the Partnership, shared by the four organ procurement organization
sites, that organ d'onation will increase when better donation processes are
implemented within hospitals and the public becomes more committed to donation
through effective public education programs.

The Partnership's strategy for improving donation within the hospitals is threefold:
first, to focus on the key hospitals which have the greatest potential for organ
donation; second, to identify key individuals within.the hospital who are most likely
to be involved with donation and to develop with them a team approach to
donation; third, to focus on the families' needs in the critical care unit and to
insure that the approach to families about organ donation is not initiated until the
family members show clear indication that they understand their loved one has
died (24). Research done as part of the Kentucky Organ Donor Affiliates (KODA)
pilot project suggested that this approach to families had a significant effect on
consent rates (11).

Health Care Professionals Within the Hospital Setting

Brain death is central to organ recovery, so within the context of their work,
neurosurgeons' support may be a critical component of a successful organ
donation program. From survey data it appears that neurosurgeons' concerns
about organ donation are mitigated by the feeling that involvement in seeking
organ donation is a professional responsibility (8). Therefore, transplant
professionals, in collaboration with the United Network for Organ Sharing (UNOS),
have begun to work with national associations representing neurosurgeons. To
date, an 8-minute video portraying the clinical assessment of brain death and a
"neuro ruler" detailing criteria for organ donation have been made available to
neurosurgeons. Resolutions supporting organ donation have been adopted and
published by the Congress of Neurological Surgeons and the American Association
of Neurological Surgeons. It remains unclear how these resolutions translate into
action on the part of the individual health care professional.

All physician groups surveyed expressed some lack of knowledge or concern about
some aspect of organ donation. If they are not confident of their knowledge or if
their concerns are not addressed, then asking them to initiate organ donation poses
a significant problem. Many of these concerns seem to be of a psycho-social
nature, such as dealing with death and dying and how the discussion of organ
donation affects a grieving family. Expectations that physicians are skilled in

242


dealing with dying patients and their families may be unfounded. Medical school
education about death and dying is relatively new in the United States (25), and
there is little consensus on teaching methods and course content. In a .1989
survey of medical schools, 51 of 1.11 respondents replied that death and dying
was taught only as a module of a larger cou.rse; 30 respondents provided only one
or two lectures on these issues during the first 2:years of medical school.

Hospital staffs are very comfortable with.pursuing organ donation when the
request is initiated by the family-of the deceased. Taking this the next step, it
could be hypothesized that if medical professionals perceive public acceptance and
support for organ donation, they will be more inclined to participate. Aggressive
public education campaigns may subtly infl-uence health care professionals as well
as the public. There is a body of literature which holds that individuals adopt
behaviors which are congruent with what they perceive to be the norms of society,
One might suggest, therefore, that if the norm of society is perceived'by health
professionals as a willingness to consent to organ donation, then there would be a
greater willingness on the part of health care professionals to approach the families
of brain dead individuals.

Reservations about approaching a grieving family about donation may result from a
perceived conflict of interest. Tolle (26) states that primary care physicians must
serve as advocates for their patients; but the role of requesting organ donation
serves another patient -- the transplant recipient. She suggests that the solution is
to have the formal request made by personnel not directly responsible for the
clinical care of the potential donor. If this is in fact a true barrier, then the organ
procurement community must reinforce their willingness, sensitivity, and
experience to participate in this process. Physicians willing to initiate the donation
discussion with families must be given adequate information and training in order
to perform this task as comfortably and as confidently as possible. How this
information and training are best imparted is not clear and needs further
investigation.

Each physician must be clear about his or her role in organ donation. Like
advanced directives, prior discussion with patients about organ donation from a
supportive physician may have great influence on family decision-making.
Information about donation should be- readily accessible to all physicians, yet there
is a paucity of information in the literature addressing the role of primary care
physicians in organ donation.

Knowledge about criteria for donation, access to the organ procurement system,
and successes of transplantation are details that can easily be provided by the
organ procurement organizations at staff meetings, grand rounds, or one-on-one
interaction. Greatest receptivity of this material may be achieved by introducing
the topic through peer organizations. Transplant surgeons and physicians are often

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effective educators in this area. The extent of legal exposure for physicians must
be addressed through authoritative channels such as eminent judges or local bar
associations. To ameliorate the heavy emotional toll which the organ procurement
process exacts on those involved, feedback should be provided from transplant
recipients as well as donor families.

Organ donation and transplantation ought to be addressed at every level of medical
training. It should begin in medical school and be reinforced during house staff
training. The UNOS education committee is currently completing a modular
curriculum to be used by medical and nursing schools. Hopefully the importance of
the subject matter will be reinforced by the inclusion of questions on credentialing
examinations.

From the previous studies, nurses appear to be the strongest supporters of organ
donation (8,14,20). Many have discussed donation with their families, and they
sign organ donor cards in higher proportions than the general public (23). Most
nurses feel that involvement in organ donation is a professional responsibility (8).
To enhance the participation of nurses in the organ donation process, the National
Kidney Foundation has developed a l-day program "Making the Critical Difference"
designed primarily for critical care nurses. The program recognizes critical care
nurses as highly trained professionals whose feelings and attitudes affect their
willingness to participate in the organ donation process. It addresses their
concerns and allows them to discover the roles they can play in the process. The
success of this program will be tracked over a 2-year period. To better understand
the nurse's role in the organ donation process and to identify a profile of nurses
most likely to participate in the process, a survey will be administered prior to the
beginning of each workshop and at 6 and 12 months following the program. This
information may prove very useful in identifying the training needs of nurses
working in critical care areas.

Perceived support for organ donation among peer groups and other health care
professionals appears to correlate strongly with willingness to participate in the
organ donation process, and most health care professionals surveyed believe that
physicians are the most critical link (8). Apparently a strong and consistent
perception on the part of nurses is that physicians are not supportive of organ
donation, despite numerous surveys that suggest the reverse. While nurses may
perceive their role as one of facilitator in the donation process, they appear
reluctant to do so without physician support. Other health care professionals such
as hospital administrators and directors of nursing express strong support for the
process if physicians are known supporters.

Believing that professional cooperation, especially among physicians, is vitally
important to successful outcome of an organ recovery, a number of hospitals have
created multi-disciplinary teams consisting of hospital administration, nursing

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representatives, neuroscientists, trauma physicians, chaplains, and social workers
to formulate mechanisms for identifying potential dono.rs and notifying organ
procurement organizations, to insure that families of potential donors are informed
of their options regarding organ donation, and to provide adequate training for
those involved in the request process (27-29). All hospitals indicated an increase
in organ donation after initiation of such programs. A. secondary outcome was the
perception that the hospital staff are better informed about organ donation issues.

Role of Other Prqfessionals

Supportive roles of other professionals in o-rgan donation need to be more closely
examined. Surveys indicate that the public is frequently unaware .of their religion's
stand on organ donation (7). Active participation of the clergy in addressing this
problem requires that they also receive accurate and timely information about
organ donation.

Attorneys and funeral directors frequently counsel individuals about health care
directives, and pre-need funeral arrangements. How can they best be encouraged
to support organ donation?

Critical Issues and Questions

We have identified a number of critical issues related to the roles of health care
professionals in increasing organ donation, and educational efforts needed to
enhance organ donation. Out of these statements, we will propose some
recommendations for consideration.

ISSUE I: All of the studies which have been conducted to date suggest that the
attitudes and behaviors of physicians are of crucial importance to the success of
organ donation programs. Although nursing staff in hospital settings have
demonstrated their willingness to approach families of potential donors, there is
evidence that without the support and leadership of physicians, there is less
willingness on the part of nursing staff to take an aggressive role in this regard.
Therefore, it is suggested that training resources should selectively target
physicians.

Discussion: Given that we know about the importance of physician attitudes in
the process of organ procurement, a number of questions are raised and need to be
answered. These include:

0   Which specialists are most important to target? Studies point to the
   importance of targeting neurosurgeons, neurologists, intensive care

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physicians, trauma physicians, and in certain cases, family practitioners,
since these individuals are most often found to be caring for patients who
are potential donors.

a   Who should most appropriately conduct the training of physicians? What
  role should organ procurement organizations, national associations of OPOs,
   UNOS, etc., play in the training process ? It has been shown that physicians
  respond better to training which is `done by peers rather than by individuals
   who are non-physicians.

0   At which point in medical training would such training be most
   effective: undergraduate level, graduate medical education, in-service
   education for practicing physicians, or all of the above? If at the
   undergraduate level, then in which parts of the curriculum should it be
   included (i.e., medical ethics, public health; critical care rotations,
   etc.)? Are there model programs that can be emulated?

0   Should there be questions included on board examinations related to organ
   procurement and transplantation, or should the maintenance of licensure
   and/or board certification rely in part upon certification that there is a

.  minimum level of knowledge related to organ procurement and
transplantation?

Clearly an indepth discussion of each of these questions may give rise to a number
of recommendations, and a variety of organizations or groups of individuals might,
logically be assigned responsibility. for the implementation of such
recommendations.

ISSUE II: The roles of the various professionals who are involved in the
coordination of organ procurement and transplantation are not well defined,
understood, or agreed upon by the transplant community, and by the medical
community in general.

Discussion: Organ Procurement Coordinators are skilled in assisting with the
process of requesting organ donation when a potential donor presents. These
individuals, who often come from a nursing or physician's assistant background,
are trained in the skills required to approach families of potential organ donors
seeking permission for organ donation, and in the management of the donor prior
to organ recovery. On the other hand, there are the critical care nurses, trauma
care physicians, intensive care physicians, neurosurgeons, and neurologists who
are providing care for the individuals who often become potential organ donors. It
appears, in many cases, that identifying the respective roles of these professionals
and promoting a team approach to organ donation may facilitate the process of
ornan donation and transplantation.

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ISSUE Ill: Training and sensitivity as, to the importance of approaching the families
of potential organ donors must be institution wide, in, addition to targeting
individual health care professionals.

Discussion: Although, as noted above, the attitudes and behaviors of physicians
related to organ procurement seem to play a key role in assuring positive
outcomes, it is equally important that institutions, namely hospitals and their
administrative structures, and related national organizations be sensitive to the
importance of .organ procurement. This calls for special efforts on the part of
organ procurement organizations and others responsible for training, to target
hospital administrators and boards of directors. Such training can be approached
through increased liaison with hospital associations at the national and State
levels. This would involve working with the American Hospital Association, and
State hospital associations, in addition to individual hospitals. Questions which are
raised in this regard include:

0   What are the most effective ways to train boards of directors and hospital
    administrators?

0   Who are the people who are most appropriate to conduct such training?

ISSUE IV: Federal and State policy makers who are involved in the formulation of
public policy related to organ procurement and transplantation, many of whom are
themselves trained as health care professionals, need to also be aware of the
issues related to organ procurement.

Discussion: Federal and State policy makers are required to view issues from the
perspective of fiscal, statutory, and regulatory considerations. As such, it is
natural for these officials to view their roles as "guardians of the gates" rather than
as facilitators. What can sometimes be short changed in the considerations of
policy makers are the human dimensions of the problem and how it might be
possible to creatively overcome barriers to the achievement of the desired
objectives. Therefore, the organ transplant community must be mindful of the
need to design strategies which will promote a high level of awareness on the part
of policy makers as to the practical dimensions of implementing legislation in such
a way as to result in effective organ procurement and transplantation programs.
Again, the question as to how best to accomplish this training and sensitization
arises. Also, who are the public officials and policy makers who should be most
appropriately targeted in such training ? One potential model for such training
might be the series of State legislative workshops which were convened around
the country in the late 1980s by the National Center for Health Services Research
in which they assembled select legislators and high level government policy makers
from a number of States to address issues involved in the response to the HIV
epidemic.

247


ISSUE V: There are too few good studies which can'serve to illuminate the subject
of the shortage of organ donors to provide us with specific guidance as to the best
approaches to professional training related to organ procurement.

Discussion: Further data accumulation and studies are needed befo.re we can
answer some of the key questions related to professional training in issues of
organ procurement and transplantation. These include such questions as:

0   How do professional attitudes and knowledge compare with public attitudes
   and knowledge related to organ donation and transplantation?

0   Are there any comparisons that can be made of various approaches which
   have been taken to train undergraduate medical students in issues relating to
   organ donation and transplantation, and the relative effectiveness of these
   approaches?

0   Are there certain OPOs whose professional training programs have
   succeeded in increasing the rate of organ donation within their respective
   regions, and if so, can we identify the elements which are responsible for
    this?

If these, and other questions could be answered, we would be in a better position
to design appropriate and effective training modalities targeting health care
professionals.

ISSUE VI: Issues of legal liability are often cited as reasons why health
professionals, particularly physicians, fail to be more active in seeking permission
for organ donation. Such questions as "who owns the donated organ?", "is the
donor card valid?", "has brain death been properly diagnosed?", etc., are raised as
being responsible for physicians' hesitan_cy.

Discussion: Since issues of legal liability appear, at least anecdotally, to be of real
concern to health care providers, it may be important to look at actual experience
to see if the perception is supported. .lt is important that the legal issues be
addressed carefully and objectively so that there are factual answers for the above
concerns. It may be necessary to design a study which would specifically
determine the frequency with which litigation has been brought against physicians
and other health care professionals in cases related to organ donation. Having
answered this question with actual data, it would be possible either to support the
perception or refute it.

ISSUE VII: Early studies suggest a number of attitudinal impediments on the part
of physicians which deter the optimal recovery of organs. These include perceived
conflict of interest, fear of liability, lack of current information about the process,

248


reluctance to spend the time necessary to work with the family of a potential
donor, and the high cost of transplantation.

Discussion: Each of these attitudinal issues can contribute to the relatively low
rate of organ procurement. Any recommendations for training, especially of
physicians, must address each of these issues so that, where possible, these
attitudes can be influenced in a direction which will succeed in improving the rate
of organ donation. In terms of the issues of cost, for example, we must evaluate
the cost of maintaining patients with end-stage organ failure as opposed to the
cost of a transplant, with subsequent restored physical function.

ISSUE VIII: Perhaps OPOs should establish realistic annual goals for organ
recovery based upon an accurate assessment of donor availability,within their
service area. This assessment and goal setting would also allow for evaluation of
the success of professional education efforts.

Discussion: If such goals were set, it could serve as a rallying point for organ
procurement organizations, and some of their professional training efforts could be
built around these goals. Of course, there is a fine line between approaching such
an effort in a humane and sensitive way on the one hand, and having it appear
distasteful on the other. Such goal setting would have to be done with the
greatest of care. However, there may be some justification for considering this
since we know that there is significant organ wastage.

ISSUE IX: Increasing organ donation from among ethnic minority communities
requires specific training for requesters which will enable them to approach the
families of potential donors in a manner which will be culturally sensitive and
appropriate.

Discussion: Among individuals needing organ transplants, there is a
disproportionately high representation of individuals from ethnic minority groups
and yet there is a lower than average rate of organ donation from members of
racial and ethnic minority groups (30). The skills required in approaching an
African American family, a Latin0 family, or Asian families from various national
and religious backgrounds are different from the skills in approaching a Caucasian
family. Therefore, the training of requestors must be tailored to developing the
specific sensitivities which are required in approaching families from a variety of
racial and ethnic backgrounds. In certain centers it may also be appropriate to
recruit requestors from specific racial and ethnic backgrounds in an effort to
improve the effectiveness of organ requests from ethnic minority groups.

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Proposed Recommendations

The authors would like Jo propose- the following recommendations to the
participants of the Surgeon General's Workshop on Organ Donation.

1. That the Division of Organ Transplantation, with advice from the transplant
community, prepare a plan for a national strategy to incorporate issues related to
organ procurement and transplantation at all levels of physician, nursing, and allied
health professions training programs. The preparation of this plan should enlist the
participation of all relevant national associatidns of health professional training and
relevant credentialing boards. The plan should address not only action steps, but
also organizations and individuals who will be responsible for carrying out the
action steps.

2. That the Division of Organ Transplantation design studies which will seek to
answer, among others, the following questions:

o How do professionals' attitudes and knowledge correlate with public
attitudes and knowledge as it relates to organ donation and transplantation,
and what interventions might effectively influence perceived societal norms
related to  attitudes regarding organ donation and transplantation?

0 What comparisons can be made of the relative success of various
modalities of training undergraduate medical students in issues related to
organ donation and transplantation?

o Which organ procurement organizations have been most successful in
mobilizing the efforts of health professionals and are there any identifiable
variables which can account for this success?

3. That the Division of Organ Transplantation, calling upon other Federal Agencies
and private sector organizations, design a program which will train key policy
makers and elected officials at the State and national levels in the importance of
increasing organ donation.

4. That the Division of Organ Transplantation convene a working group of
interested parties to consider better ways of "marketing" the services of OPOs and
organ transplant coordinators to the health professional and hospital communities
at large.

5. That a study be conducted to determine the frequency and nature of litigation
which has been brought against health care professionals in cases related to organ
procurement and transplantation. The results of such a study could serve to allay

250


fears, or could provide useful guidance as to how to better fashion statutes in
order to protect health care professionals.

6. That the Division of Organ Transplantation study the rates of organ
procurement and the organ demand within the regions served by the OPOs, and
develop realistic goals for organ procurement within these respective regions so
that these goals can serve as rallying points for institutions and health care
professionals within those regions.

7. That the Division of Organ Transplantation develop a contract request for
proposals which will seek to identify attitudinal impediments among the various
health care professionals to optimal organ donor procurement. This effort should
also seek to propose means of overcoming these impediments through various
training modalities.

8. That the organ transplant community explore improved means of training health
professionals in the skills necessary to approach families of various racial and
ethnic minority groups requesting organ donation.

9. That forums be sought to provide training in organ donation issues for the
various professional groups not directly involved in organ donation, but whose
roles place them in situations where they could influence organ donation, such as
morticians, attorneys, medical examiners, and others.

REFERENCES

1.    United Network for Organ Sharing. Press release, April 22, 199 1.

2.

McCarthy P, Starnes V, Shumway N. Heart and Heart-Lung Transplantation: The Stanford
experience. In P. Terasaki, ed. Clinical Transplants. Los Angeles, CA: UCLA Tissue Typing
laboratory. ?989:63-7 7.

3.

United Network for Organ Sharing. Press release, March 199 1.

4.

Department of Health and Human Services, Division of Organ Transplantation. n
Report on Oraan Transplantation. April 1986.

5.

Gallup Survey. Americans and organ donation: Current attitudes and perceptions.
Conducted for the Partnership for Organ Donation.  October 1990.

6.

Gallup Survey. Attitudes toward organ transplants/organ donation. Conducted for the Dow
Chemical Company. April 1986.

7.

Lieberman Research Inc. A study of attitudes toward organ donation. Conducted for the
Association of Organ Procurement Organizations. December 1990.

251


8.

PrOtt8S J, 88tten HL. Health c8r8 .professitin8ls and hospit administrators in `organ
procurement: Bttitudes, reservatigns and their resolution. Am JPH. 7988;78:642-645.

9.

Spit81 A, Kittur OS. 88rri8rS to organ donatitin among house staff ph ysicians.  Tr8nsolant
proc. 7990;22:24 74-24 76.

70.

Morris JA, Wilcox TR, Noreuil T, Frist WH. Organ Donation: A University Experience.
South Med J. 7990;83:884-888.

7 7.

Garrison RN, Bentley FR, Raque GH, Sl8dek LC, Evanisko MJ, Lucas 8A. There is an answer
to the organ donor shortage. Presented to the Americen College of Surgeons, October
7 990. Submitted for public8 tion.

72.

N8th8n HM, Jarrell BE, Broznik 8, et al. Estimation and Ch8r8Ct8riStiCS of th8 potential
organ donor pool in Pennsylvanie.  Transolantstion.  799 7;5 7: 742- 749.

73.

Younger SJ, Lendefeld S, Coulton CJ, Juknialis SW, Leary M.  "Brain Death" and organ
retrieval. JAMA. 7989;267:2205-22 70.

74.

Malecki M, Hoffman M. Personal level of discomfort among nurses and its effect on
obtaining consent for organ and tissue donation. ITS News flllinois Tlsnsplant Society).
7986;3.

75,

Ettner a/, Youngstein KP, Ames J. Professional 8ttitud8S toward organ donation and
transplantation. -.  7 988; 7 7: 72- 78.

76.

Corlett S. Professional and system barriers to organ donation.  Tr8nSDl8nt PrOC.
7985;77:777-779.

7 7.

Warmbrodt J. Unpublished professional education survey presented to the National task
force on organ donation, 7985.

78.

Politoski G. Unpublished survey of critical care nurses performed by the Nation81 Kidney
Found8 tion, 7 988.

79.

Falvo OR, Woehlke P, Tippy P. Family practice residents' attitudes toward organ donation.
J Familv Prac.  7 987;25: 7 63- 7 66.

20.

St8rk JL, Reiley P, Osiecki A, et al. Attitudes affecting organ donation in the intensive care
unit. m
  7 984; 73:400-404..

27.   Adams P.  The medical prof8ssion8l8s 8 barrier to transplantation. Presentation to the
   Atlanta Public Hearing to the Nation81 Kidney end Urologic Diseases Advisory Board. May
     7988.

22.   Wakeford RE, Stepney R. Obstscles to orgen donation. Br J Sum. 7989;76:435-439.

23.

8idigare SA, Oermann MH. Attitudes and knowledge of nurses regarding organ
procurement. Heart Lung. 799 1;20:20-24.

24.

P8rtnerShb for Organ Donation. Solving th8 organ donor shortage. Report. May 799 7.

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25.

Mermann A, Gunn 0, Dickinson G. Learning to care for the dying. A survey of medical
schools and a model course. Academic Medicine.  799 7;66:35-38.

26.

Tolle SW, Bennett WM, Hickam OH. Responsibilities of prim8ry physicians in organ
donation. Ann Intern Med.  7987; 7 06: 740-744.

27.  Potter P. Making required request work. Nurse M&8Demen(.  7988; 79:50-58.

28.

Oh HK, Uniewski MH. Enhancing organ recovery by initiation of required request within 8
major medical center. Tr8nSDl8nt Proc. ,7989; 78:426-428.

29.

Kittur OS, McMenamin J. Impact of 8n organ and tissue advocacy program on community
hospitals. American Suraeon (in press).

30.

Kasiske R, Ne ylan J, et al. Speci81 Article:  The Effect of Race on Access and Outcome in
Tr8nSPl8ntatiOn. New En&and Journal Med.  799 7;324:302-307.

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RE-EVALUATION OF DONOR CRITERIA:
   CADAVERIC DONORS

J. Wesley Alexander, M.D., SC-D., Department of `Surgery, University of Cincinnati
College of Medicine

INTRODUCTION

Present, Actual, and Potential Cadaveric Donor Pool

Organ donation in the United States has remained static for the last 3 years. In
1988, there were 4,069 cadaveric donors; in 1989, 3,923; and in 1990, 4,357.
The apparent increase of 11 percent in organ donation between 1989 and 1990
(Fig. 1) does not represent a significant increase in recovery from the historic donor
pool. Analyzed by age alone, there were 3,866,donors below the age of 56 in
1988, 3,765 in 1989, and 3,822 in 1990, an actual decrease since 1988.
Conversely, the number of donors 56 years of age and older increased from 231 in
1988 to 276 in 1989 and 388 in 1990, a rise of 70 percent in 2 years which also
represents an increase from 5.6 percent to 9.2 percent of all donors (Fig. 2). At
the same time, the percentage of donors from which organs were taken but not
used grew from 2.6 percent to 3.2 percent in donors aged 55 or less, compared to
9.5 percent to 14.5 percent in donors aged 56 or greater (Fig. 3). Thus, organ
donation has increased only slightly during the last 4 years, and this gain is entirely
due to increased utilization of older donors.

There are numerous reasons why organ donation has not increased. These include
societal and medical factors, professional disincentives, personal disincentives for
donation, and a lack of willingness to donate. Among the societal or medical
factors are enactment and enforcement of laws that decrease the accidental death
rate among the traditional potential donor population, including laws that increase
the penalty for drunk driving, laws which resulted in a growing use of passive
restraint devices and seat belts, laws for reduced speed limits, laws for child
restraint devices, helmet laws, and an increase in the drinking age. In addition,
improved highway design and vehicle design, public education directed to
preventing accidental injury, enactment and enforcement of laws to ensure a safe
working environment, and improved medical care which has decreased the
mortality from traumatized victims, have all contributed to a decrease in the
historic potential donor pool. Perhaps even more significant is the AIDS crisis and
newly introduced tests which exclude potential donors (e.g., HTLV-1 and hepatitis
C) that together have been estimated to have reduced the historic potential donor
pool by as much as 10 percent.

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Among the professional disincentives which persist are a lack of adequate
information concerning brain death, a lack of compensation for professional time
and effort, malpractice concerns, fear of alienating an already stressed family,
emotional distaste for the procurement process, and the consumption of personnel
and medical resources which is accentuated by a nursing shortage. In some, but
not all areas of the country, there is a lack of cooperation by medical examiners
due to fear of interference of due process of law. There are important
disincentives.for dissuading organ donation from potential cadaveric donors. These
include prolongation of the death process and potential emotional turmoil for the
donor family, increased funeral costs (e.g., embalming) which are often passed to
the donor family, and increased costs of hospitalization including additional tests to
determine death and prolongation of care of patients to establish d.onor status.
These are particularly problematic in patients without full coverage of private
insurance.

Indirectly related to the organ donor shortage are disincentives for living donations.
These include lack of compensation fo.r time off work, fear of pain and
disfigurement, lack of provision for child care (where appropriate) during
hospitalization and recovery, lack of provision for compensation in the event of
potential disability that may occur as a result of the donation process, and lack of
provision for compensation in the event of death.

Perhaps the most serious problem related to the donor shortage is a lack of
willingness to donate. In various opinion polls, more than one-half of individuals in
the country indicate that they are unwilling to donate their own organs at the time
of death. The reasons for this are numerous but include a general distrust of the
health care system and transplantation in particular, a fear of hastened death to
achieve organ retrieval (believed by almost one-third of the population) (11,
unwillingness to consider one's own mortality, fear of desecration of the body,
personal religious beliefs, misconceptions and superstitions, and racial and
socioeconomic issues.

The potential donor pool has been estimated by a number of surveys to be about
50-55 potential donors per million po,pulation (2-4). At the present time,
approximately one-third of the potential donors are used for transplantation,
one-third are lost as potential donors because of a lack of willingness of the family
to donate organs, and one-third are lost because of inefficiency of the organ
procurement system. Some feel that the maximal achievable number of cadaveric
donors in the United States approximates 8,000 per year. This can be
accomplished only by addressing each of the issues discussed above in concert
with an increased utilization of "marginal" donors.

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Present and Projected Needs

The number of patients. on the waiting list has increased dramatically, by 18.6
percent per year since 1988, reaching 21,982 by January 1, 1991 (Fig. 4). The
rate of increase during the last 4 years has been .approximately steady. With
increasing success rate with transplantation, especially the introduct.ion of new
immunosuppressive modalities, it is anticipated that larger numbers of patients will
become candidates for transplantation who are currently felt to be poorly suited.
Certainly, changes in practice in the last two decades have resulted in a marked
increase in the transplantation of patients over the age of 55 and those with
diabetes. It is quite conceivable that within the next few years, as. many as
one-half or more of the patients developing end-stage renal disease will be
candidates for transplantation. With more uniform success rates, the numbers of
patients who are potential candidates for liver and heart transplants will also
increase significantly,

It is tragic that the number of patients that die while waiting for an organ has
increased even more dramatically than the numbers of patients on the waiting list,
an increase from 1,628 in 1988 to 2,206 in 1990, or 19.3 percent during the last
year (Fig. 5).

Economic and Medical Costs of Organ Shortage

Dr. Paul Eggers, Chief of the Program Evaluation Branch of the Office of Research
for HCFA, estimated in 1990 that for. every 2,000 cadaveric kidney transplants,
$68,000,000 could be saved over the next 10 years (personal communication).
This would represent an increase of only 1,000 cadaveric donors, 25 percent of
the current number of donors being taken, or approximately 12 percent of the
remaining potential donors in the United States. These cost estimates include only
direct costs to HCFA and do not include indirect costs or the economic benefits of
return of patients to the work force and improved rehabilitation. In reviewing local
data of the country's largest renal transplant center, the University of Alabama,
Phillips and Diethelm have estimated that at 10 years each single donor would
result in a savings of approximately $70,000, which is consistent with Egger's
estimates (5). However, other estimates have not been as conservative.

CRITICAL ISSUES IN USING MARGINAL DONORS

Results of a Survey of Actual Practice by the Organ Donor Center

In 1990, the UNOS Organ Center conducted a survey by mail to all kidney
transplant centers to determine the individual center's criteria of acceptability of
kidneys for transplantation (6). Seventy eight percent of the 184 centers indicated

257


they would use a donor aged 65, 58 centers indicated they would ,accept a kidney
from a donor up to age 70, and only fifteen centers (8 percent of respondents)
indicated that a donor over the age of 70 would be considered. In contrast, only
35 centers would utilize a single kidney from a donor less than 2 years of age for
transplantation into an adult recipient; an additional 49 centers would utilize a
single kidney from a donor aged 5 or less, and 49 centers would require that the
donor be older than 5 when used for an adult. Only slightly more relaxed criteria
were expressed for acceptability of .minimum donor age for a single kidney
transplant to a pediatric recipient; only 33 of 160 centers would utilize a kidney
from a donor in the first year of life for tiansplantation to a child. More centers
than not would accept enblock kidneys from donors of the age of 3 or less. One
hundred thirty six of 179 kidney transplant centers would accept a kidney from a
donor with a past medical history of hypertension when the donor was compliant
with medications or was not taking medications. However, only 84 of 183 kidney
transplant centers would use a kidney from a non-compliant hypertensive donor.
Surprisingly, 25 centers would use a kidney from an HIV seronegative active drug
abuser, and approximately two-thirds of the centers would use a kidney from a
seronegative former drug user. Only a few centers would use a kidney with a
creatinine over 3.0 mg/dl whether it was rising or falling. More than one-half (94
of 186 kidney transplant centers) would use a kidney from a donor with a past
history of insulin dependent diabetes mellitus. There was great variation in the
. .practice of transplant centers from different regions of the country indicating at the
very least, a lack of a vigorous and judicious approach to solving the crisis of organ
shortage.

Absolute Medical Contraindications for Organ Donation

There are basically only three absolute medical contraindications for organ
donation. These are: 1) when the donor has a potentially transmissible infectious
disease that could adversely affect outcome in the recipient to a significant degree;
2) when the donor has an active, potentially transmissible cancer; and 3) when it is
anticipated that the organ will not work. The presence of a transmissible disease
does not necessarily provide an absolute medical contraindication for organ
donation. As an example, organs are frequently transplanted from CMV positive to
CMV negative recipients with the anticipation that many patients will develop CMV
disease and some may even die from the disease. The same may be true for some
donors with potential bacteremia from remote infections, such as those with lobar
pneumonia. However, the risk of death from certain infections makes use of
certain donors absolutely contraindicated. These include the presence of AIDS,
active viral hepatitis, Jakob-Creutzfeldt's Disease, malaria, or disseminated
tuberculosis.

It has been demonstrated repeatedly that metastatic malignant cells in a
transplanted organ can grow in the recipient, escape from immune regulation,

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metastasize, and even cause death of the recipient. The risk to the recipient is
sufficiently great to contraindicate donation in patients where a specific cancer is
known to metastasize to the organ being considered for transplantation, and the
patient has an active cancer. A past history of a "surgically cured" cancer is not
necessarily a contraindication for organ donation with the possible exception of
melanomas treated at a stage where there is an anticipated poor survival rate.

The final absolute medical contraindication for organ donation is when it is
anticipated that the organ will not function when transplanted. There are
numerous gray areas requiring judgment calls.

Balance of Risk Versus Benefit

There are obviously risks to using non-perfect donors. These include an increase in
the cost of hospital care, disability and disfigurement of the recipient, physical and
emotional suffering, utilization of expensive medical resources, and possibly even
death. However, these must be balanced against the death of more than 6 percent
of patients waiting for kidney transplant, and almost one-half of patients waiting
for liver or heart transplant due to lack of a suitable organ. The cost benefits of
transplantation of liver and heart are felt to be positive although exact figures are
not available. However, as previously indicated, a minimum of $34,000,000 could
be saved each year to the Medicare program if the number of kidney transplants
were increased by only 1,000 per year. To achieve a balance between the
potential risk versus benefit, it will be necessary to use increased numbers of
marginal donors, closely monitor their outcome, and determine which marginal
donors are acceptable and which are not acceptable, achieving a balance between
risk and benefit. It is obvious at the present time that numerous patients are dying
on the waiting list because marginal donors are not being used. The real problem
is to determine the precise points when marginal donors provide more benefit than
harm. For example, use of organs from marginal donors that provide results no
more than 10 percent worse than organs from ideal donors would generate an
overall benefit.

There is a potential backlash from using marginal donors, both related to public
opinion and the potential for litigation against members of the transplantation
team. If transplant surgeons are successfully sued for trying to provide an overall
medical benefit by using a marginal donor which results in damage to a specific
individual, the use of marginal donors will cease and many more people will die of
organ failure. Because of this specter, it is believed that the recipient should be
informed not only of the potential risks but also the potential benefits of not
accepting a specific organ. Another real problem with the use of marginal donors
is that there may be a perceptible decrease in the overall organ survival rate, at
least as compared to the use of organs from only ideal donors. There is
considerable pressure by the public, the Federal government, and the insurance

259


agencies to achieve high survival rates. However, in doing so by excluding
marginal donors, many patients are denied access to transplantation because few
transplant centers. will extend the use of marginal donors if they know their results
might be inferior to other centers and result in decreased patient referral, lack of
certification, and public scorn. It is important that in making information
concerning results available to the public from specific transplant centers, the
results of marginal donors be included so that rational and informed decisions can
be made concerning the center's degree of competence.

WAYS TO EXPAND THE DONOR POOL

As mentioned in the introduction, the "traditional donor pool" seems to be
decreasing rather than increasing. The use of older donors has accounted for
almost all of the increase in the organ donation rate during 1990 as compared to
1989. The use of marginal donors has, however, been incompletely explored and
could be expanded by the following:

Expand Age Limits

Currently, many centers will exclude donors categorically because of
"unacceptable" age. If an organ is anatomically normal and has normal function,
there is no reason why it should not be used for transplantation regardless of age
(7,8; reference 8 has additional review).

Use of Diabetic Donors

The presence of insulin-dependent diabetes has traditionally been a contraindication
to donation. However, many of these patients have perfectly normal organs,
including the heart, liver, kidney, and lungs. Specific tests to examine organ
function and vascular anatomy can be performed in these particular patients. If
organ function is normal and there is no vascular disease, there is no reason they
should not be used for transplantation into non-diabetic recipients (9). However,
there is concern that the development of secondary diabetic complications in
transplanted organs may occur at an accelerated rate in diabetic recipients.

Use of Hypertensive Donors

Increasing numbers of hypertensive donors have been used, but follow-up data
have been insufficient to determine which of these are unacceptable. Biopsy of
the organ before transplantation, when appropriate, and careful examination of the
major vessels, may be important determinants.

260


Use of Hypotensive Donors

Shock may or may not have an adverse effect on ultimate organ function.
Prospective data should be collect&d to determine the limits of acceptability of
donors who have been hypotensive and of the effects of the use of pressor agents.

Use of Infected Donors

Currently most .potential donors with suspected systemic infection or a recent
history of septicemia are excluded. However, there is actually scant evidence that
many infectious diseases would be transmitted under the coverage.of specific
antibiotic therapy. Often, donors are even excluded with a positive RPR test for
syphilis. Even if the donor did have syphilis, it is unlikely that the recipient would
develop syphilis under the coverage of penicillin therapy. The problem is not
infrequently encountered regarding the use of kidneys from donors with positive
urine cultures.

Use of Non-Heart-Beating Donors

Even without good methods for organ preservation, non-heart-beating donors were
used for kidney transplantation on a routine basis prior to the introduction of brain
death legislation. Numerous potential donors are lost because of the requirement
by some centers that only donors with brain death can be used. Actually, the
kidney can tolerate up to 30 minutes or perhaps longer of warm ischemia with a
very high success rate. Protocols should be developed for core cooling of potential
recipients before permission can be granted or where there is a delay between
cardiac arrest and organ harvest, and for the testing of viability of organs removed
from non-heart- beating donors'.

Use of Donors with Abnormal Organ Function

The results of the recent UNOS Organ Center survey emphasizes the wide variation
in the practice of centers with regard to the maximum acceptability for the level of
serum creatinine (6). Levels of acceptability should be more universally defined
and adopted. Other tests, such as the MEGX test for liver function, should be
more carefully documented to determine limits of acceptability.

Use of Donors at High Risk of Viral Infection

The exclusion of many high risk categories from organ donation presents a serious
problem which relates primarily to high risk groups, e.g., IV drug abusers who have
a negative ser'ology for HIV and hepatitis C. If highly sensitive and decisive tests,

261




such as the polymerase chain reaction (PCRI test, could be developed for a routine
screening of donors, it would allow the use of subjects from the high risk
categories as long as they were negative by these highly sensitive tests.

Use of Donors with Past History of Malignancy

Arbitrary limits have been set regarding the use of donors with a past history of
malignancy (e.g., 2 to 5 years after remova! of a breast carcinoma with no
evidence of recurrence or metastatic disease). Whether these arbitrary limits are
correct or not needs to be further defined by careful data analysis after judicious
expansion of this potential pool.

Conclusion and Recommendations

Every transplant center strives to achieve the best possible results for its patients,
and it has been historically appropriate to exclude donors that might cause disease
or disability in the recipient or failure of the transplanted organ, or at least a higher
probability thereof. However, with the indications for solid organ transplantation
continually expanding to an ever increasing population base, and with an even
,more rapidly expanding death rate of patients on the waiting list because suitable
transplantable organs are lacking, all possible ways to achieve an expanded donor
pool need to be explored. Even with extensive programs for public education and
incentive programs for donation, the number of donors will be insufficient to meet
the needs. Therefore, expansion of.the donor pool to include marginal donors is
timely and appropriate as long as the use of such donors continues to provide more
overall benefit than risk. It is not known exactly how much the donor pool can be
increased by using marginal donors, but the author's best estimate would be at
least 1,000 donors per year, or an increase of 25 percent in addition to what can
be achieved by other means.

The following recommendations are made to maximize the safe use of marginal
donors:

1)



2)



3)

4)

Development of acceptable limits for each organ to be used as a national
standard.

Collection and analysis of data on a yearly basis with redefinition of the
acceptable limits on a periodic basis, based on analysis of hard data.

A standard of acceptability for success rate with marginal organs should be
set for each condition. This could be as high as 15 percent less than the
success rate for ideal organs.

Provision of legal protection for the use of marginal donors.

262


5)

Inclusion of the need for the use of marginal organ donors in public and
professional educational programs.

6)

Development of UNOS policies to establish donor criteria and mafidate
offering of organs that meet national rather than local standards.

7)

Government funding of trials specifically designed to determine the limits of
acceptability of donation from marginal donors.

263


ORGAN DONATION -- UNITED STATES
        (Cadavers)

5000




4000



3000




2000




1000




  0

4069

4257


10

8



6

4



2



0

CADAVERIC DONORS BY AGE

Percentage

---- Age O-55

68% increase in donors ~55 (1988 - 1990)

1990


8

6

4

2

0

PERCENTAGE OF CADAVERIC DONORS TAKEN
    -- BUT ORGANS NOT USED --

Percentage

16                              14.5
14-

12-

IO-

2.6              2.9              3.2


.

  I                                 1                                 I
1988             1989             1990

- Age O-55  -I----- Age > 55 I


25

20



15




10




5




0

PATIENTS ON WAITING LIST FOR AN ORGAN
    -- AT BEGINNING OF YEAR --

Thousands

21.982

   I                         I                                                 I
1988         1989     19bo          1991

Increase of 12.8 % per year (1989-901,
16.6 % per year `(1987-90)


DEATHS OF PATIENTS ON WAITING LIST

2500

                                      2206

2000  -





1500  -





1000  -





500  -





  0                 I                             I                             I
          1988             1989             1990

Increase of 26.3 % per year


1.



2.

3.

4.

5.


6.


7.

8.

9.

Association of Organ Procurement Organizations Survey "A study of attitudes toward organ
donation *. Conducted by Lieberman Research, inc., New York, NY; December, 1990.

Nathan HM, Jarrell BE, Broznick B, et al. Estimation and characterization of the potential
organ donor pool in Pennsylvania: report of the Pennsylvania Statewide Donor Study.
Transplantation 199 1;51: 142.

Richardson K. Report on evaluating the potential organ donor pool in Kentucky. Presented
at South-Eastern Organ Procurement Foundation Tri-Annual Meeting, Orlando, FL; January,
1990.

Evans RW. Chapter 34. The actual and potential supply of organ donors in the United
States. In Terasaki Pt ted). Clinical Transplants 1990. Los Angeles, CA: UCLA Tissue
Typing Laboratory; 199 1; pp. 329.

Report of UNOS Ad Hoc Donations Committee, .1990- 199 1.

UNOS Organ Center Survey, 1990.

Alexander JW, Vaughn WK, Carey MA. The use of marginal donors for organ
transplantation. The older and younger donors. Transplant Proc. 199 1; 23:905-909.

Alexander JW, Vaughn WK. Use of "marginal" donors for organ transplantation. Influence
of donor age on outcome.  Transplantation.  199 1;51: 135- 14 1.

Spees EK, Orlowski JP, Fitting KM, Temple DM, Reynolds CP. Successful use of cadaver
kidneys from diabetic donors for transplantation. Transplant Proc. 199&;22:378-379.'

269



RE-EVALUATING DONOR CRITERIA: LIVE DONORS

John D. Lantos, M.D.
Mark Siegler, M.D.
The Center for Clinical Medical Ethies
The University of Chicago

The use of living, rather than cadaveric, donors for organ transplantation remains
controversial.`+ Physicians who consider using living donors face a unique
ethical dilemma. They subject a healthy person to a procedure which entails some
medical and surgical risk and which does not improve or maintain that person's
health. Instead, the risk to the donor is justified by the benefit to the recipient.

This dilemma is often mistakenly perceived as a problem of patient consent.
However, Woodruff noted as early as 1964 that consent is not the crucial issue.
Many competent adults freely consent to self-sacrificial actions for altruistic
reasons. Instead, Woodruff wrote, "The question is not whether the donor is right
to offer to give up his kidney, but whether the doctor is right to allow him to do
so?

Woodruff proposed that solutions to this dilemma would not be found in moral
absolutes but in clinical judgments based on probabilities. He proposed four
relevant considerations for physicians who would consider allowing a person to
undergo the risk of kidney donation. First, he thought that it must be established
that the proposed recipient would die without the kidney (this written in 1964,
before dialysis was available and before brain death made the use of cadaver
organs feasible). Second, the donor must be in good health. Third, the donation
must be entirely voluntary. Woodruff was so concerned about possible coercion
that he thought the potential recipient should not be told that transplant was under
discussion until the decision was made to proceed. Finally, the donor must be
informed of risks, and of the fact that, given the state of the art at that time, there
was a considerable chance that his organ donation would turn out to be of little or
no benefit to the patient. These arguments, Woodruff thought, justified renal
donation in 1964. Many physicians agreed. Live kidney donation became a widely
used procedure.

Since 1964, the circumstances under which live donation is offered have changed.
With regard to renal transplantation, the development of dialysis and the
acceptance of brain death, which allows the timely harvesting of cadaver kidneys
for transplant, have led to alternatives to live donation which can extend the lives
of patients with end stage renal disease. Use of live donation can no longer be
justified as the only alternative to death. Instead, it must be justified as a better

271


therapy than alternative therapies, either because it offers better quality of life or
because it offers better long-term outcome. Similar arguments must be made to
justify pancreatic transplants, although they are tougher to make since the
alternative therapy is relatively less burdensome. For patients with end stage liver
or lung disease, by contrast, no alternative to transplant presently exists, so
patients must either wait for a cadaveric organ or consider a transplant from a
living donor.

In spite of these modifications, the approach taken by Woodruff, `which involves
probabilistic balancing of risks and benefits, is still relevant today. Most transplant
surgeons do not consider live donor transplants as unacceptable because they
involve donor risk, however minimal. Instead, in deciding whether to use living
donors, they weigh the relative risks to the donor, which must be low, against the
potential benefits to the recipient. Prudent people might be allowed to consent to
a small personal risk in order to give another person a great benefit, but not a great
risk for a small benefit. Decisions about whether the risks outweigh the benefits
allow for individual variations within areas of general consensus among both
physicians and potential donors.

This paper will focus on what is now known of the risks and benefits of kidney,
`pancreas, liver, and lung transplantation using living donors. We will then consider
ethical and policy issues surrounding live organ donation.

KIDNEY DONATION

j-listory

The first successful kidney transplant, in the mid 195Os, involved a genetically
identical live donor.7 Attempts at unrelated transplants over the next 5 years
were universally unsuccessful. * In the early 196Os, immunosuppression with
azathioprine and corticosteroids led to improved results and cautious optimism.g
By the late 196Os, transplantation using both cadaveric and live donors had
become a standard therapy." During the 196Os, dialysis also developed to the
point where it could be routinely offered. By the 197Os, patients with end stage
renal disease and their doctors faced a choice between live donor transplant,
cadaveric transplant, or hemodialysis. By the late 197Os, peritoneal dialysis
become another widely used alternative. Nevertheless, living donors continued to
be used. By 1984, 32 percent of all kidney transplantations done in the United
States involved living donors."

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Donor Risks

Live kidney donation requires general.anesthesia. Data on the risk of general
anesthesia are controversial. A large recent analysis by Lund and Mushin
estimated the mortality associated with general .anesthesia at 0.1 /l OOO.`*
Mortality estimates from older studies, many of which did not carefully distinguish
anesthesia-related deaths from other post-operative deaths, range from
0.6/l 000'3*`4 .
      to 19 3/l OO0.15 The American Society of Anesthesiologists
lists the mortality risk for the healthiest (Class I) patients as 1 /1250, or
0.8/l 000."

In addition to anesthesia risk, nephrectomy may be associated with post-operative
mortality. An analysis by Bay and Herbert of 2495 donor nephrectomies reported
in the literature, and 5698 donor nephrectomies reported from the 12 largest
centers that transplant kidneys from living donors, indicates an approximate
incidence of 1 donor death per 1600 nephrectomies.'  Margreiter estimates that
20 living kidney donors had died by 1987, for. a mortality rate of at least
1/1000.`7

In addition, there is some risk of long-term morbidity as a result of the loss of a
kidney. Sobh et al compared 45 living related kidney donors with 20 healthy sex-
and age-matched controls.  Donors had minor abnormalities in renal function,
including lower glomerular filtration rate, higher creatinine, and a greater incidence
of albuminuria than controls." However, they had no difference in the incidence
of hypertension. Foster, in an uncontrolled study, reports similar findings among
13 patients who had single kidneys and were at least 5 years status post
nephrectomies for renal cancer--mild increases in creatinine and albuminuria that
appear to be stable over time. lg. Wikstad reports on 36 patients who were born
with a single kidney. Patients were followed for 7-40 years. They found
microalbuminuria in 47 percent of patients with a single kidney, although none of
the patients had renal insufficiency or hypertension.*'  Other studies indicate
similar long-term complications of kidney donation.2'*22

Taken together, these small single-center studies offer some reassurance about the
long-term prognosis for kidney donors. However, they offer no guarantees about
the long-term safety of living with a single kidney. Each study was small enough
to have missed rare but serious complications. In each study, a number of patients
were lost to follow up. It is surprising that no long-term multicenter follow-up on a
large cohort of renal donors have been reported. Such a study could help quantify
donor risks.

273


Recbient Benefits

Kidneys from living donors are in greater supply than those from cadavers, so one
of the primary benefits of using live donors is increased organ availability.23
However, 86 percent of transplant centers say that they would continue to use
living donors even if there were an adequate supply of cadaver kidneys.24 Thus,
in addition to increasing organ supply, live donor transplants are perceived as
having other advantages over cadaver transplants. These are primarily related to
outcome.

Kidneys from unrelated living donors probably do not confer a better prognosis for
the recipient than kidneys from cadavers. In'one study comparing 41 patients who
received grafts from living unrelated donors with 41 patients who received
cadaveric grafts, graft survival rates at 3 years were 81 percent for unrelated living
donors and 86 percent from cadaveric transplants.25 In this study, the grafts
from live donors functioned more rapidly than cadaver grafts, with no need for
post-transplantation dialysis. Preliminary data on 809 transplants from the
International Collaborative Transplant Study also indicates no differences in graft
survival between cadaveric and unrelated living grafts. (Newsletter 1, Feb 6,
1991). There are currently no large, multicenter, long-term follow-up studies
which address this question. However, that may be remedied soon with the
International Collaborative Study and with the UNOS registry.*'

Kidney grafts from related living donors fare considerably better than grafts from
cadavers. The North American Pediatric Renal Transplant Cooperative studied 761
transplants, of which 42 percent were from living related donors. Children who
received kidneys from living relatives required less immunosuppressive therapy and
had a longer period of time between their transplant and their first rejection (36 v
156 days). One year graft survival was 88 percent in the live donor group and 71
percent in the cadaver group.27

A study from the University of Miami compared results from 368 adults who
received cadaveric kidneys with those of 263 adults who received living related
kidneys. Both patient survival and graft survival were better in the living related
group. Ten year actuarial patient survival rates were 72 percent and 58 percent in
the two groups. Graft survival rates were 56 percent and 36 percent
respectively.*'

Improvement in survival among recipients of kidneys donated by living relatives
appears to be explained by HLA matching. In one study, which had only a small
number of living related transplants, survival was no different between those and
transplants between HLA A, B, and DR-identical cadaver donors.29 Nevertheless,
the likelihood of finding perfect matches is higher among relatives than among
unrelated donors.

274


Altogether, the sum of risks and benefits have led many renal transplant centers to
conclude that continued use of living donors is justified.

PANCREAS DONATION

History

Partial pancreas transplantation- from living donors has been performed at the
University of Minnesota since 1977. The Minnesota group began exploring the
use of live donors with hopes that pancreatic grafts from living donors would be
rejected less often than grafts from cadavers3' Data showing that partial
pancreatic resection would not lead to diabetes was cited to justify the donor risk,

Pancreas transplantation has not been used as extensively as other organ
transplants, primarily because insulin therapy for diabetes is believed to be safer
than transplantation, even though it may be less effective. A large part of the risk
of transplantation comes from the need for long-term immunosuppression. Thus,
for patients who are receiving a kidney transplant for renal failure, the additional
risks of pancreatic transplant diminish. Such patients have been the primary target
population for pancreatic transplants.

Donor risks

Partial pancreas donation is a complicated operation. Some partial pancreas donors
have developed pancreatic fistulae and psuedocysts with post-operative
pancreatitis. Pancreas donors also face the risks of general anesthesia discussed
above.

In addition to operative mortality, partial pancreas donors are at risk of developing
pancreatic insufficiency and diabetes. Kendall et al, from the University of
Minnesota, found that partial pancreatectomy was associated with deterioration in
insulin secretion and glucose tolerance in all of 28 donors when they were
evaluated 1 year post-operatively.31 However, fasting serum glucose levels,
fasting serum insulin levels, and daily fluctuation in serum glucose levels during a
24-hour sampling period were all within normal range in the donors. Eight donors
were followed for 1 to 6 years, and none showed any further deterioration in
pancreatic function. Altogether, 1 of 54 donors in the Minnesota series developed
diabetes, and this donor would not have been accepted for donation by the pre-
donation screening criteria now in use.32 Given this small experience, however,
there is not enough data to accurately determine the risk of a partial pancreas
donor's developing diabetes.

275


benefits
Recibent

Before examining the benefits of live donor pancreatic transplant, we acknowledge
that there is serious debate about the indications for any pancreatic transplant.33
Successful pancreatic transplantation, using either cadaver or living donor
pancreas, cures diabetes. Transplant recipients no longer require exogenous insulin
for the maintenance of normoglycemia. Pancreatic transplantation also improves
some of the complications of diabetes, such'as peripheral neuropathy and
nephropathy,34.35 although it is not clear how .much improvement
transplantation can confer. Retinopathy is not improved by pancreatic
transplantation, but early transplantation may prevent the development of
retinopathy.3e

Thus, the potential benefits of pancreatic transplants are for patients who are
prone to complications and who do not yet ha.ve severe complications.37
Unfortunately, there is no reliable method for predicting which patients will develop
complications, except by selecting those with early complications, such as early
renal disease or pre-proliferative retinopathy.38 Diabetic children whose disease is
associated with major neurovascular disease may also be candidates for grafting,
although, as of June 1988, only 6 transplants had been done in patients under the
age of 20.3g

Pancreatic transplantation results have been steadily improving. Comparing results
from 1966-77 and 1986-89, l-year recipient survival rates have gone from 39
percent to 87 percent and l-year graft survival rates have gone from 5 to 56
percent4' Results are even better for those United States cases reported to the
UNOS Registry. From 1987-89, l-year patient and graft survival rates were 91
percent and 69 percent respectively.40

Grafts from live donors appear to be less prone to rejection than cadaver grafts. In
Minnesota, at a time when l-year functional graft survival rate for technically
successful transplants in non-uremic, non-kidney transplanted patients was 32
percent for cadaver donors, the graft survival rate was 73 percent for living related
transplants." This probably reflects better HLA matching, as l-year graft
.survival in cadaver transplants varies from 67 percent for transplants with O-2
HLA-AB mismatches to 58 percent for patients with 3 or 4 mismatches
(p =0.058).42

Thus, to the extent that pancreatic transplantation is indicated, there may be some
benefit to the recipient to receive a segmental graft from a live donor rather than
from a cadaveric donor. However, the current controversy over the indications for
pancreatic transplantation, combined with the relatively high risk to the living
,pancreas donor, make the use of live donors for pancreatic transplantation difficult
to ethically justify.

276


The number of living pancreas donation procedures has decreased over the past 2
years, suggesting that even the proponents of the procedure may feel that the risk-
benefit balance currently does not justify use of this procedure.

LIVER TRANSPLANTATION

History

Liver transplantation was developed throughout the 19.60s and 1970s. By 1983,
an NIH consensus panel concluded that whole liver transplantation was standard
therapy for a number of indications, including biliary atresia, inborn errors of
metabolism and nonalcoholic cirrhosis43; Technical advances in the 1980s
allowed surgeons to transplant reduced-size livers,44*45 split Iivers,4" and
eventually to use a portion of a liver from a living donor for transplantation into a.
childe4' Liver transplants from live donors have now been performed in at least
five centers in four countries.

Donor Risks

The donor requires a general anesthesia for a partial hepatectomy. Anesthesia
risks have been discussed above. A partial hepatectomy can be quite risky in the
face of underlying cirrhosis, and some surgeons have reported operative mortality
rates as high as 11 percent.48-48  In a number of series involving non-cirrhotic
patients, however, the operation has been performed with no or very low
mortaIity.50-54

Liver donors have developed operative complications. One patient required
splenectomy as a result of ah intra-operative laceration of the spleen. Two donors
have required non-operative management of bile leaks. As of May 1, 1991, 50
living liver donor procedures had been performed without a death in the donor
group (Whittington PF, personal communication). Long-term risks to the donor
appear to be low. After partial hepatectomy, the liver regenerate$" so liver mass
is expected to return to normal within 4-6 weeks, although this has not been
studied in the living donor situation. Thus, although no long-term data on donors
are currently available, there is clinical evidence from comparable patients and
some physiologic reason to believe that donors will not have inadequate hepatic
function as a result of partial liver donation.58

Recbient Benefits

In contrast to kidney and pancreatic transplants, there is no alternative medical
therapy for patients dying of end stage liver disease. The primary benefit to the
recipient is the availability of an organ suitable for transplant at a time when the
recipient is still medically suitable or appropriate for transplant. For a number of


patients, especially children and adults with fulminant hepatic failure, the shortage
of suitable cadaveric livers leads to their death or clinical deterioration while
waiting for an organ. The use of reduced-size and split livers ameliorates the organ
shortage for children, but the shortage remains.

Liver transplantation from living donors,, rather than cadavers, may confer other
benefits as well. The transplanted organs may be healthier, since there would be
decreased ischemic time between organ harvest and transplantation. Cadaver
organs may have suffered ischemic injury as a result of the events'that led to the
donors' death. Furthermore, in other organ transplant situations, .organs from
family members are less likely to be rejected, most likely as a result of better HLA
matching. This may be true for livers as well.

It is hard to evaluate the efficacy of living liver donation since the procedure is so
new. Initial results are comparable to results after whole liver transplants from
cadaver donors. Preliminary data shows that, for liver transplants from living
donors, graft survival rates are 72 percent (36/50). Graft survival rates in the U.S.
and Japan, the countries with the most experience, are 80 percent (35/44). The
period of follow-up varies from l-l 5 months. These are comparable to 6-month
graft survival rates of 69 percent for cadaveric liver transplants.57

If graft survival is comparable or better, and living liver transplants allow patients
who would have died while waiting for an organ to survive, then many people will
judge the recipient benefits to outweigh the small known and unquantified
unknown risks to the donor. '

LUNG TRANSPLANTS

History

Partial lung transplants from living donors have been successfully carried out in
animals for a number of years.58 The first use in humans took place in 1990,
with the transplant of a lung lobe from a mother to a daughter.5g To date, only
one such procedure has been performed. As a result, little is known of the
feasibility, the risks and benefits, or the likely outcomes of this procedure.

Donor Risks

Because only one such procedure has been done, the donor risks are difficult to
assess at this point. However, lobectomies have been done in patients with
underlying pulmonary disease, that is, patients who might be expected to be sicker
than prospective lung donors, with very low operative mortality.60*6' The
feasibility pf this operation makes the use of living lung donation ethically possible.

278


ReciDient Benefits

The shortage of acceptable cadaver lungs for transplant is more severe than for
other organs. e2 Patients who become brain dead usually have suffered some lung
injury, and the incidence of pulmonary infection, a contraindication to transplant,
among ventilated patients is high.e3 Furthermore, lungs may be used either alone
or as part of a combined heart lung transplant, which increases the demand for
donor lungs. As a result, patients who may benefit from lung transplants are likely
to die while awaiting a suitable organ. The use of living donors could improve the
chances of such patients receiving a transplant.

ETHICS AND PUBLIC POLICY

Some major differences exist in the four organ transplant situations described
above. For kidney and pancreas failure, alternative medical therapies are available,
so patients rarely require a transplant to prevent imminent death. Instead, the goal
of transplantation is to improve quality of life.64*65 By contrast, patients with
end stage lung or liver failure must either receive a transplant or die. There are
differences in operative risks for the donation procedures, although clearly each
procedure is associated with some risk -- at least the risk of general anesthesia. In
each case, there is some uncertainty about the long-term risks to the donor,
especially whether they are at higher risk for disease as a result of donation.
These facts and uncertainties must form the basis for judgments about whether
the benefits to the recipient outweigh the risks to the donor. These judgments will
change as more experience and information is accumulated about each procedure.
Nevertheless, in each situation, certain ethical concerns arise that must be
addressed.

Beneficence and Nonmaleficence

Physicians set limits on the types of procedures which are offered to patients, and
thus, on the procedures to which patients may consent. Generally, physicians are
guided in establishing these limits by considerations of beneficence (i.e. the desire
to do what is good for the patient) and nonmaleficence (i.e. the desire to avoid
harm). Most physicians feel that the donor risks must be minimal, and will not
allow patients to donate unless they are in perfect health. Only 10 percent of renal
transplant centers will allow patients who are less than optimal donor candidates
to donate.66

Studies show that many patients would be willing to consent to donation, even if
they were in poor health or there was a significant mortality risk to donation,
especially if the potential recipient is a relative. " This has led some to argue that
physicians should loosen the acceptability criteria for donors, allowing patients to

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assess risks and benefits for themselves. *8 Regardless of the acceptability
criteria used, physicians will still -.be in the role of deciding whether to consider a
particular person for orga.n donation. In doing so, the physicians' concerns about
doing harm to the patient will be weighed against patients desires to act
altruistically.

Physicians may consider not only the physical risks of donation but the
psychological sequelae as well. For many kidney donors, donation is a difficult,
anxiety producing, and painful experience.eg Kidney donors often have
moderately severe depressions for 1 to 2.weeks after the operation."  Some
donors have even gone on to commit suicide." For most, however, the anxiety
and depression resolves after a few weeks and most donors then experience a
considerable boost in self-esteem.72,73  Long-term follow up shows that most
donors experience positive psychological sequelae from donation.74 There are no
data on the number of adults who, when asked, refuse to donate, to see whether
not donating causes psychological problems. Interestingly, when Gouge et al
studied adults who were considered as donors and who went through HLA
matching but were not selected as the donor,75 there were no differences in
objective or subjective assessments of quality of life or psychological well-being
between this group and the actual donors when assessed a number of years after
the transplant occurred.

On the whole, then, it appears that the risks of psychological harm to donors are
low, and the potential for long-term.psychological benefits quite high. Here again,
however, physicians are in the position of having to make clinical judgments about
whether, for a particular person, the risk of harm outweighs the likelihood of
benefit.

Patient Autonomv and Informed Consent

In most cases, donation is only acceptable if an autonomous patient consents to
the procedure. (Possible exceptions include children or incompetent adults.) Valid
consent has three elements. First, the patient must have the cognitive capacity to
make decisions; second, the patient must be given sufficient information to
understand the medical situation; and finally, the decision must be made without
undue coercion.

As healthy individuals who are choosing to undergo potentially risky surgery, living
organ donors must meet the highest standards of decision making capacity. On
rare occasions, such as when the only compatible donor is a minor or an
incompetent adult, difficult decisions may arise about the appropriateness of using
a donor who lacks decision making capacity.78*77 The circumstances under
which donation by a minor or incompetent adult is acceptable are beyond the
scope of this paper, but have been discussed elsewhere."

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it is axiomatic that organ donors should have access to all relevant information
about the risks of donation. This should include both, short-term risks and long-
term risks, and must include discussions of current areas of uncertainty, such as
the long-term risk of renal failure for kidney donors or the long-term risk of diabetes
for pancreas donors. Although standards for disclosure of risks in informed
consent for any medical procedure are not well defined, standards for donation
should be especially rigorous since the donor does not stand to benefit from the
procedure.

Such information may not, however, be a key factor in donor decision making.
Empirical studies show that most kidney donors make their decision to donate
immediately after the subject of transplant is first mentioned to them, and no
additional information has any effect on their decision.78.7g*80 Nevertheless,
because some potential donors may change their decisions based on medical data,.
detailed information about the risks of donation must be provided.81 Because
potential donors appear unwilling or incapable of evaluating information about
risks and benefits, physicians may recommend that donors undergo psychological
or psychiatric evaluation to determine whether their decision is truly
voluntary.82*83 Unfortunately, since this is an area of psychology that is seldom
evaluated in a medical context, it is not clear what evaluative tools psychiatrists
should use to assess voluntariness, or whether psychiatrists are truly better than
other physicians or social workers in making this assessment.

Given high standards of decision making capacity and adequate disclosure of
information about donor risk, the potential for coercion becomes the key element
of informed consent. Three possible components of donor coercion should be
distinguished. The first is psychological or internal coercion created by the donor's
own feelings of guilt because the patient may die without donor participation.84
This negative or coercive psychological response may, of course, be balanced by
positive emotional responses to donation, such as feelings of loyalty, responsibility,
love, or duty toward a family member.

Psychological coercion may be unavoidable, but may also be indistinguishable, in
many cases, from laudable psychological motivations for donation. In any case,
this sort of coercion is not unique to organ transplantation. The need to balance
selfishness and altruism is a universal feature of an individual's relationship with
his or her family. Because this is a universal element of human interaction, we do
not think that it invalidates voluntary consent.

The second .element of donor coercion is external. Pressure upon an unwilling
donor to consent may come from family members or even from health care
workers.85 If family pressures appear to be unduly coercive and the donor seems

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conflicted about the decision to donate, psychiatric evaluation and counseling of
both the potential donor and the family may be necessary.86 Although
controversial, physicians might also, with the consent of the patient, inform a
family that the decision not to donate was based. on medical criteria, such as tissue
incompatibility, rather than lack of consent. This would offer the potential donor
psychological protection from family pressures.

Pressure from the transplant team may be more difficult to avoid. Surgeons can
counter the risk that they will unconsciously,coerce donors by highlighting the
potential risks of donation, and emphasizing that a decision not to donate would be
understandable and acceptable. A "donor advocate," independent of the
transplant team, may counsel the potential donor and help work through the tangle
of conflicting emotions.87 However, the use of a mandatory "donor advocate"
would subject donors who have no emotional conflicts to a needless and
potentially unpleasant psychological evaluation.

A third form of coercion could come from financial incentives to donate. Some
people argue that the legalization of organ selling would be coercive, as it would
create an irresistible financial incentive, Further, this coercion would be strongest
on the poor, who may yield to financial incentives and make decisions that they
otherwise would not want to make.88 Thus, by this argument, remuneration for
donation is inherently discriminatory against the poor. Others argue that the
coercive elements of a market in organs could be regulated so that the public
policy benefits outweigh the ethical risks. 8g We will now examine arguments for
and against financial incentives. For the purpose of this paper, we will not discuss
the sale of cadaver organs, but will focus on arguments for and against the sale of
organs by living persons.

The most compelling argument for financial incentives is that they might increase
the supply of organs for transplant. .At present, the use of organ transplants is
limited by the supply of available organs. Thus, for each of the four procedures
discussed above, there is a permanent waiting list of patients for transplant. For
liver and lung transplants, in which no alternative therapy is available, a number of
patients die because no suitable organ becomes available.

Opponents of policies permitting the purchase or sale of organs argue that other
policies might also increase the supply of organs. Such policies include the use of
driver's license check-offs to consent to organ donation, required request laws,
physician education, and public awareness campaigns. Until such policies are fully
implemented and their results evaluated, opponents of markets argue, we can't say
that the organ shortage is irremediable, and so should not make a drastic,
controversial change in public policy.go Opponents further argue that permitting
payment for organs will taint organ donation, drive voluntary donors away, and
that the organs obtained under a free market system will likely be of inferior or

282


uncertain quality compared to those obtained today." Thus, they argue,
payment for organs may actually decrease the supply or quality of organs.

These opposing positions are based on predictions of how people would respond to
particular policies, and on the problems that those predicted responses would
create. However, since we don't know whether people would respond that way,
the differences between the two positions do not seem solvable hypothetically or
rhetorically. The only way to determine the effect of policies which would permit
reimbursement for organ donors would be to try them and evaluate them. Policies
designed to increase the recovery of cadaver organs have been tried for a number
of years and have been only marginally effective.

A second argument supporting policies allowing individuals to sell their nonvital
organs is that, if we respect autonomy, we should allow adults to use and dispose
of their bodies as they see fit.`* Opponents also argue that respect for autonomy
is not absolute. Society may prohibit certain activities if it deems them too
dangerous, as it has done for activities such as bare fist boxing, riding motorcycles
without helmets, and working in dangerous work environments. Society may also
ban morally reprehensible activities, such as prostitution, baby selling, or selling
oneself into slavery.

The question is whether selling organs for transplant is either too dangerous or too
demeaning to permit. This question can be further refined. Clearly, it is morally
acceptable to many people to allow competent adults to donate organs. People
who choose to donate are considered morally praiseworthy for donating. Andrews
points out that "It is difficult to justify a prohibition on payment for what would
otherwise be a legal and ethical act -- giving up body parts for someone else's valid
use.`lg3 Does the addition of fihancial incentives tip the balance of moral
considerations so steeply that we must reverse our moral judgments? If it does, it
is only because we fear that it would turn a voluntary act into an involuntary one.

The arguments on both sides are compelling, and suggest that a compromise
position might be appropriate. Some degree of financial reimbursement or
remuneration for people willing to give up their organs might increase the supply of
organs. Thus, although outright sale of organs might be prohibited, some
reimbursement to donors for hospital expenses, or lost wages as a result of
donation might be considered acceptable. Harvey suggests that a distinction can
be made between payment for organs and commercial exploitation of organs.84
Policies to allow payment without exploitation might require that people who agree
to give up organs for reimbursement wait 30 days to reconsider their decision, to
prevent rash or poorly-considered decisions. They might also prohibit individual
organ buying transactions, requiring instead that reimbursement be limited to
donors who register with an organ bank, as potential bone marrow donors now do,
and who agree to be available for donation when an appropriately matched

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recipient becomes available. Careful medical screening of such donors, as takes
place now, should insure the quality of donated organs.

Under such circumstances, some reimbursement seems justifiable -- at least for
pain, suffering, inconvenience, and lost income -- although careful regulation to
prevent exploitation would be necessary. With such regulation, it should be
possible to increase the incentives for people who might consider giving an organ,
without necessarily realizing the worst fears .of the opponents of reimbursement for
organ donation. Reimbursement would not necessarily turn a morally praiseworthy
action into a morally reprehensible one, any more than paying soldiers decreases
the altruism and heroism which leads them to risk their lives for their country. The
real moral concern is not whether money changes hands but whether exploitation
is taking place.

CONCLUSIONS

The use of living donors for kidney, pancreas, liver, and lung transplantation is
likely to increase. In many cases, the use of living donors offers transplant
recipients a better outcome than cadaver transplantation. It also increases the
supply of available organs. Thus, live donor transplantation saves lives.

In deciding whether the use of live donors is acceptable for any particular clinical
situation, it is always necessary to weigh the potential benefits to the recipient
against the risks to the donor. Physicians should set guidelines for when donation
using living donors is acceptabje. Patient autonomy, though important, is not
absolute. It is constrained by the traditional professional ethical obligation of
physicians to do no harm.

Guidelines for deciding when donation is acceptable and for selecting donors
should reflect clinical data on outcomes, the normative values which prohibit
donors from undergoing more than minimal risk, and procedural safeguards to
prevent coercion. Criteria for determining what constitutes minimal risk may vary
between centers. Each center should publish their guidelines so that public
scrutiny and peer review might refine them. Published guidelines and prompt
reporting of outcomes should allow critical evaluation of the clinical and ethical
acceptability of different approaches to live organ transplantation. This will allow
transplantation using living donors to continue while safeguarding the rights of
patients, donors, and doctors.

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