WORK GROUP I-C: A NATIONAL CAMPAIGN:
FOCUSING ON CHILDREN, YOUTH, AND YOUNG
ADULTS

  Chairperson: Stephen P. Dunn, MD
Co-Chairperson: Ellen Bethel Yeager, MS
Background Paper: Robert E. Shoenberg, PhD
Staff Assistant: Allison A. Hammond, RN
Group Members: Patricia Aiken-O'Neill, JD
         Vicki L. Albright, MPH
           Hester Clark

Elias S. Cohen, JD
William DeJong, PhD
John A. Del Gatto
Joan L. Di Costanzo, MEd
Richard N. Fine, MD
Vicki S. Freimuth, PhD
Karen G. Kuperberg, RN, BSN, CCTC
Veronica K. Meury
Elizabeth Nuckolls, BSN, CPTC
Donna M. Oiland
Alejandro Vasquez

PREAMBLE

Any improvement in organ donation depends in large part on the education of
children, youth, and young adults. This can only be achieved though the
development of a wide variety of educational vehicles and opportunities in the
public and private sector. Coordination of these educational activities and
programs requires the leadership of the DOT. Educational efforts will also
require the involvement of professional educators, transplant care givers, minority
group representatives, and advocates for children, youth and young adults in a
unique partnership which the DOT must foster. This task must begin now. We
are pleased to be part of the Surgeon General's Workshop and hope that our
efforts contribute to this important goal.

RECOMMENDATIONS

I-Cl. The DOT grant program should be substanrially increased to encourage
experimental programs to increase awareness among children, youth, and young
adults, overcome barriers to donation, and promote family discussion of the
issue.

51


Immediate Action:

I-C.l.Str.1:  Approach minority groups to encourage organ donation
education among children, youth, and young adults and to fund pilot projects.

I-C.l.Str.2:  Require local OPOs and tissue banks to offer educational
awards to schools for student essays and dramatizations which promote organ
and tissue donation awareness.

I-C.l.Str.3: Support through grants the experimental programs Teens for
Transplant, MOTRAIN, Kids On The Block, and the D.C. Organ Donor
Committee's curriculum.

I-C.l.Str.4: The anticipated decrease in grant funds available for F'Y 92 is
inconsistent with the growing donor gap and the educational needs identified
by this work group and should be reversed through increased Congressional
funding.

I-C. 1 .StrS: Offer specific grant support for developing educational materials
for students that have as a goal encouraging family discussion.

I-C.2: The DOT should expand its role in making basic research and other
resource materials available to OPO officials and other advocates of organ and
tissue donation.

Immediate Action:

I-C.2.Str.l: Develop a Current Health Information Database (CHID) subfile
on organ and tissue donation for the purpose of identifying and making
available unpublished reports, educational materials, and other "fugitive"
literature.

Intermediate Action:

I-C.2.Str.2: Collaborate with other DHHS research agencies to sponsor new
research (see I-C.2.Str.l.) on children, youth, and young adults.

I-C.2.Str.3: Compile existing survey and focus group research and conduct
new research as necessary to:

1.  Identify distinct target audiences among children, youth, and young
  adults.

52


2. Survey current knowledge, attitudes, and psychological barriers to
donation; and,

3. Develop strategies for motivating increased donation.

I-C.2.Str.4: DOT/DHHS-funded research findings must be submitted
to DOT, and made available to the public and to the CHID database (see
I-C.2.Str.3).

I-C.3. The DOT should form partnerships with professional organizations to
enhance education regarding organ donation in children and youth.

Immediate Action:

I-C.3.Str.l: Identify appropriate organizations which have an interest in
donor awareness education directed at children, youth, and young adults
and encourage these efforts through provision of materials, resources for
presentations, and/or consultation for expanding programs. Specific
attention should be directed to the eduction field, minority organizations,
and pre-professional groups (medical, nursing, and education students).

I-C.3.Str.2: Undertake efforts through DOT staff and/or OPOs to respond
to calls for papers and otherwise get on the agenda for national professional
meetings to promote donor awareness education programs.

Intermediate Action:

I-C.3.Str.3: Convene national and/or regional meetings of representatives
from education-related and professional organizations (e.g., pediatricians) to
provide information, training, and materials to raise the awareness of their
members regarding their role in organ donation awareness programs.

I-C.3.Str.4: Generate and make available generic education materials to
professional organizations.

I-C.3.Str.5: Establish and maintain a Donor Education Network to facilitate
communication and sharing among organizations involved in awareness
education to enhance the potential of developing partnership efforts, materials
development, and the establishment of an educational materials library.

I-C.4. The DOT should encourage the development of model educational
curricula that will teach about organ transplantation and donation.


Immediate Action:

I-C.4.Str.l: Identify and review existing curricula and materials which
should be evaluated by interested groups and disseminate the best to
appropriate groups for adoption and/or adaption.

Intermediate Action:

I-C.4.Str.2: Work with textbook writers and publishers to get organ and
tissue transplantation into textbooks in a variety of appropriate curricular
areas. Developers of educational materials should be similarly addressed.

I-C.4.Srr.3: Assemble curriculum experts in several academic disciplines to
develop a comprehensive model curriculum addressing children from early
childhood through high school.

1. The curriculum should be designed so that it can be adopted as a
whole by a school system or in component parts - or adapted to
  meet individual needs.

2. The curriculum should emphasize the integration of organ and tissue
donation and be developed for inclusion into subjects usually
addressed in existing courses, e.g. study of organ systems in a health
science course, study of public policy issues in a social science class.

3. DOT should enlist as a partner in this enterprise a national or-
ganization of educators whose advocacy for the curriculum can have
a significant impact on its adoption, e.g. National Science Teachers
Association, National Education Association, and National As-
  sociation for Social Studies Teachers.

4. Prior to dissemination, the curriculum should be. reviewed by a
variety of interested groups, e.g. educators on areas such as religion,
minority issues, health, etc.

5. Develop model curricula for inservice and continuing education for
teachers (such as curriculum developed by the D.C. Organ Donor
Committee for the National Kidney Foundation).

I-C.5. The DOT should require the OPTN to incorporate into its goals and
planning process organ donation educational objectives appropriate to youth.

54


Immediate Action:

I-C.S.Str.1: Include representatives of children, youth, and young adults
interests on appropriate UNOS committees.

I-C.S.Str.2 Expand OPO guidelines to include educators and youth
representatives on advisory boards.

I-C.S.Str.3: Collaborate with appropriate organizations to implement youth-
related educational activities.

Intermediate Action:

I-C.S.Str.4: Organize and disseminate scientific registry data related to
children, youth, and young adults.

I-C.6. The DHHS should encourage the Department of Education, the Centers
for Disease Control, and other relevant Federal agencies to make organ
transplantation and donation education a national objective.

Immediate Action:

I-C.6.Str.l:  Form a liaison with HCFA to implement educational re-
quirements as a condition of participation for transplantation organizations
within the agency's programs.

I-C.6.Str.2: Form a liaison with the Department of Education to establish
organ donation education for children, youth, and young adults as a national
priority.

Intermediate Action:

I-C.6.Str.3: Incorporate organ and tissue donation into CDC Teenage Health
Teaching Modules, and "Growing Healthy."

I-C.6.Str.4: Encourage the Department of Education and CDC to develop
grant programs to encourage innovative education programs at the local level.

I-C.6.Str.S: Appoint ombudspersons to coordinate various Federal efforts to
          .

increase donatron among children, youth, and young adults.

55


I-C.7. The Secretary of DHHS, the Surgeon General, and DOT should
encourage private, voluntary efforts by youth, student, and community groups to
promote organ and tissue donation.

Immediate Action:

I-C.7.Str.l:  Explore opportunities for collaboration with insurance
companies, public utilities, and other private corporations to educate their
customers about organ and tissue donation.

I-C.7.Str.2: Offer awards/recognitions to youth organizations which promote
organ donation education.

I-C.7.Str.3:  Collaborate with American Red Cross commercial blood
donation programs and other appropriate organizations to develop methods
for encouraging the completion of donor cards as a part of their operations.

I-C.7.Str.4: Identify recipient and recipient-family support groups (such as
TRIO) and donor-family and hospital-based support organizations. Support
groups and encourage their involvement in educational activities with
children, youth, and young adults.

I-C.7.Str.5: Encourage the establishment of a permanent merit badge for
organ and tissue donor awareness among scouting, campfire, and other
similar youth organizations.

I-C.7.Str.6:  Form a partnership with the American College Health
Association to encourage donation among the students they serve.

Intermediate Action:

I-C.7.Str.7: Convene a conference of leading social, religious, and service
organizations for youth, including minority youth, to encourage their
involvement in stimulating organ and tissue donation among their member-
ship and disseminating innovative program ideas.

I-C.7.Str.8:  Support the activities of Teens for Transplants and other
organizations whose sole purpose is donation and transplant related projects.

I-C.8. All DHHS Agencies awarding grants and contracts in the area of organ
donation education for children and youth should make specific provisions for
adequate evaluation of program outcomes.

56


Immediate Action:

I-C.S.Str.1: Require that applications for grants and contracts include
adequate research designs to assess program outcomes.

I-C.8.Str.2: Designate a proportion of grant funds for evaluation.

I-C.9. DOT should reinvigorate efforts to enroll drivers' license applicants as
potential organ and tissue donors.

Immediate Action:

I-C.9.Str.l: Review procedures in each State for encouraging the completion
of donor cards by drivers' license applicants, the success of these procedures,
and factors that discourage or fail to encourage potential donors.

Intermediate Action:

I-C.9.Str.2: Work with the officials of Departments of Transportation and
State to develop strategies for increasing the number of completed donor
cards by drivers' license applicants, including changes in State law or
regulation, staff training for DMV employees, and enhanced public
information/education programs.  This should include a special focus on
student drivers.

I-C.9.Str.3: Develop model legislation to enable the designation of donor
status as a permanent part of the driver's license, subject to revision at the
time of license renewal.

I-C.9.Str.4: Fund demonstration projects for increasing student enrollment
in donation, including programs involving school-based and private driver
training programs and the MOTRAIN system.

I-C.10. DOT should seek opportunities for promoting organ and tissue donation
through local mass media.

Immediate Action:

I-C.lO.Str.1: Identify appropriate celebrity spokespersons to represent its
promotional efforts and to serve as role models for children, youth, and
young adults.

57


I-C.lO.Str.2: Seek cooperation with the OFTN in the development of mass
media campaigns directed toward increasing organ donation awareness
among children, youth, and young adults.

Intermediate Action:

I-C.lO.Str.3: Expand the DOT grant program to encourage experimental
programs that combine local mass media and community organization
approaches to increase awareness among children, youth, and young adults;
to overcome barriers to donation; and to promote family discussion of the
issue.

I-C.lO.Str.4: Develop video and/or audio news releases for use by local
television and radio news programs.

I-C.lO.Str.S: Establish a public relations program to stimulate favorable
coverage of organ and tissue donation, with special attention to national
youth-oriented publications, college newspapers, and newsletters for social,
religious, service, and educational organizations for youth.

I-C.lO.Str.6: Develop a program of media training for local OPO`officials
and other advocates of organ and tissue donation. Special attention should
be paid to eliminating medical terminology that reinforces public mis-
perceptions and to develop, instead, more appropriate terminology for
specific lay audiences.

58


WORK GROUP II-A: THE DELIVERY SYSTEM

  Chairperson:
Co-Chairperson:
Background Paper:

Staff Assistants:

Group Members:

Jeptha W. Dalston, PhD
Isabel P. Dunst, JD
Arthur Caplan, PhD
Robert Arnold, MD
Laura Siminoff, PhD
Jon L. Nelson
Vera Lake

Jesse B. Barber, MD
Lori E. Brigham, MBA
Ronald L. Dreffer, BS, CPTC
Michael J. Evanisko
Roger W. Evans, PhD
Jerold R. Mande
Mark J. Mannis, MD, FACS
Maxwell J. Mehlman, JD
Sharon Mellor, RN, CPQA
Luis A. Morales Otero, MD
John J. Requard, III, BS
Sarah J. Sanford, RN, MA, CNAA
Otis L. Story, Sr.
Arthur L. Trask, MD, FACS

RECOMMENDATIONS

II-A.1 Maintain the current approach of organ and tissue donation based on
voluntary, altruistic choice and family participation, but continue to explore the
potential impact of possible alternative approaches, such as financial incentives
and presumed consent.

II-A.l.Str.1: DHHS should support the collection and further analysis of
existing data on the attitudes of the public as well as those involved in the
donation process regarding the issues of financial incentives and presumed
consent.

II-A.l.Str.2: In addition, DHHS should lead and promote development of
a research agenda for alternative approaches to organ acquisition and
development of a program of demonstration projects which would include
other approaches which might be pursued.

59


II-A.l.Str.3: The Surgeon General should publicly support and promote the
programs of the National Organ Transplant Act including the OPTN and
OPOS.

II-A.2. Improve the outcome of requests to families to donate by assuring that
the individual responsible for making the request is appropriately trained to make
an effective request.

II-A.2.Str.l: HCFA should clarify its regulatory requirements on hospitals
to clearly permit hospital protocols to provide that OPOs can be delegated
the responsibility to make the donation request of the family.

II-A.2.Str.2: The Division of Organ Transplantation should convene an
advisory group to develop standards for individuals making requests for
donation.

II-A.2.Str.3: Identify and establish means to eliminate barriers that prevent
active participation of neurosurgeons, emergency care physicians, critical care
nurses, neurologists, and other related personnel in the organ donation
process.

II-A.3. Improve the compliance of hospitals with the current statutory and
regulatory requirements of routine inquiry and required referral.

II-A.3.Str.l: HCFA should immediately develop a comprehensive strategy
for increasing hospital compliance which includes mechanisms for policy
implementation, monitoring, enforcement, and evaluation.

II-A.3.Str.2: HCFA should develop measures of hospital performance for
identification and referral of organ and tissue donors and feedback of
compliance data to hospitals and OPOs.

II-A.3.Str.3:  UNOS should require transplant centers to demonstrate
compliance with routine inquiry and required referral as a condition of
UNOS membership.

II-A.3.Str.4: DOT shall identify successful routine inquiry and required
referral programs, and establish and maintain a clearinghouse that facilitates
and promotes these models.

II-A.3.Str.S: DOT, through its grant program, will encourage the develop-
ment of successful strategies intended to improve routine inquiry and
required referral.

II-A.3.Str.6: The DOT grants and contract program should be expanded to
include funds to develop model required referral/routine inquiry protocols.

60


II-A.4. Enhance the effectiveness of decision-making by potential donors.

II-A.4.Str.l:  DHHS should publish a compendium of effective State
strategies for increasing numbers of individuals choosing to donate their
organs and tissues, and disseminate it to State lawmakers for possible State
action.

II-A.4.Str.2: HCFA's policies and procedures to implement the Patient Self
Determination Act should incorporate organ and tissue donation.

II-A.4.Str.3: DOT should fund a study on how donor cards can become
more effective tools for donation. The study should include alternative sites
for signing donor cards, ways of increasing family involvement in signing
donor cards, and ways of assuring that families and health care providers
know that an individual has signed a donor card.

II-A.4.Str.4: .The Surgeon General should encourage the use of Durable
Powers of Attorney (DPA) to make wishes known about donation and to
clarify which family members or other persons should be consulted by
providers in making organ procurement decisions.

II-A.4.Str.S: DOT should evaluate the possibility of replacing the current
donor card format with a donor DPA.

II-A.4.Str.6: The Surgeon General should encourage the National Commis-
sion on Uniform State Laws to establish the legal sufficiency of donor DPAs
and to clarify the legal immunity of health care providers in adhering to the
terms of the DPA.

II-A.4.Str.7: DOT should explore methods to increase the use of donor
DPAs in minority populations.

II-A.4.Str.8: DOT should develop methods for making donor DPAs and
other advanced directives known to hospitals and OPOs in the case of
nonelective admissions.

II-A.5. Increase the effectiveness of the organ and tissue procurement system.

II-A.5.Str.l: DHHS should widely publicize the results of studies concer-
ning the reasons for widely varying rates of procurement by OPOs.

II-A.S.Str.2: DOT should develop a targeted grant program to assist poorly
performing OPOs develop structures that would result in improved perfor-
mance. Special consideration should be provided to applicants proposing
collaboration with hospitals.

61


II-A.S.Str.3: The Assistant Secretary for Health and the Administrator of
HCFA should convene a meeting of representatives from the procurement
community to identify, disseminate, and encourage the adoption of successful
strategies associated with organ and tissue procurement.

II-A.S.Str.4: AOPO, EBAA, AATB and DOT together should develop
standardized policies and procedures to enhance effectiveness and efficiency
of procurement.

II-A.5.Str.5: Eliminate the current inconsistencies and confusion in the
identification of organ donors by establishing standardized criteria for donor
selection.

II-A.5.Str.6: DOT, in conjunction with AOPO, OPTN, and tissue and eye
banks, should create a centralized data base on hospital and procurement
success rates.

II-A.S.Str.7: DOT should intensively review outlier OPO performance.

II-AS.Str.8: DOT should gather, disseminate, and support adoption of
strategies which are known to provide donor family support, decrease care
giver burdens, and increase organ and tissue recovery rates.

II-A.S.Str.9: DOT, in conjunction with professional societies, hospitals, and
hospital representatives, should develop strategies to educate and support
physicians and nurses in positions of triage and management of potential
organ and tissue donors.

II-A.S.Str.10: The Surgeon General should encourage the Secretary of
DHHS to have proposed rules governing the policies of the OPTN published
within 30 days.

II-A.6. Investigate the competitive and financial disincentives for hospitals to
participate actively in the procurement process, including costs associated with
medical management of potential donors.

II-A.6.Str.l: HCFA should conduct a study of hospital costs relating to
organ donation to ascertain the extent to which unrecovered costs are
hindering hospital involvement in organ donation. Examples of such costs
are physician services, laboratory tests, and other very extensive services in
critical care units to maintain organ viability after brain death pending
retrieval.

II-A.6.Str.2: Based upon the study results, HCFA should develop proposals
to eliminate such disincentives.

62


II-A.6.Str.3:  The Surgeon General should become apprised of these
disincentives and exert leadership to understanding of the organ procurement
inhibition arising from the competitive disincentives on trauma centers which
regularly furnish organs to competing transplant centers. While hospitals
operating these trauma centers are reimbursed for the cost of organ retrieval,
they are not compensated for the very large financial losses associated with
operating the trauma centers. Negative motivation sets in when trauma
personnel of one hospital are expected to extend themselves for retrieval of
an organ which has the effect of enhancing the competitive reputation of a
transplant center at a rival hospital. This dynamic may be unfortunate, but
it exists and materially inhibits organ procurement.

II-A.7. Increase the ability of the hospital to manage brain dead' potential
donors and preserve organs prior to recovery in order to provide adequate time
to obtain family consent in a sensitive manner.

II-A.7.Str.l: The Secretary of DHHS shall develop an RFP for basic bench
research to identify chemical, biological, and other compounds research
which will preserve anatomic and physiologic viability of donor organs and
tissues prior to recovery but after determination of brain death.

II-A.7.Str.2: The Secretary of DHHS shall initiate multicenter studies on
optimal clinical management for patients determined to be brain dead.

IIiA.7.Str.3: Required referral protocols should be developed by UNOS and
DHHS that will provide OPOs notification as early as possible of a potential
organ donor so that the OPO can assist the hospital personnel in appropriate
donor management to assure that families are given the opportunity to
donate.

II-A.8. Evaluate the extent to which there are financial disincentives for live
donation.

II-A.8.Str.l: DOT should expand its analysis of funding sources for living
donor expenses.

II-A.9. Encourage cooperative efforts between OPOs, tissue banks, and eye
banks.

II-A.9.Str.l: DOT should encourage and facilitate joint public and profes-
sional education programs by OPOs, tissue, and eye banks.

m Until medical certification of brain death, patient management should
continue with the goal of patient survival.

63


II-A.9.Str.2: DOT should encourage and facilitate the publication of joint
public relations materials.

II-A.9.Str.3: DOT should encourage cross-training of staffs of OPOs, tissue
banks, and eye banks.

II-A.9.Str.4: Encourage where applicable the community-based one number
concept.

II-A.9.Str.5:  The Surgeon General should work with national groups
representing funeral directors, coroners, medical examiners, and emergency
medical services personnel to develop guidelines that would facilitate their
professional involvement in the donation system.

II-A.9.Str.6:  The Surgeon General together with HCFA shall exert
leadership to call for professional membership in OPOs' Boards of Directors
by community leaders who demonstrate stature, capability, and commitment
in enhancing organ availability.

II-A.9.Str.7: Congress should enact legislation that encourages and facilitates
cooperative relationships among OPOs, tissue banks, and eye banks that
includes promoting single number calling.

II-A.lO. Assure equal opportunity for transplants in order to ensure the public's
enthusiastic participation in donation.

II-A.lO.Str.1: Eliminate the 3-year Medicare eligibility limit for successful
transplant patients and extend coverage for payment of immunosuppressive
medications for transplant patients to be made coterminous with the period
of entitlement.

II-A.lO.Str.2: Encourage public and private insurers to offer both coverage
and reimbursement for transplant procedures considered to constitute
established therapy.

II-A.lO.Str.3:  Identify medical treatments and social behaviors which
prevent or delay onset of end-stage organ failure. Develop strategies for
increasing access to such treatments and enhancing such social behaviors.

II-A.lO.Str.4: Certificate of Need and OPTN membership approval should
require disclosure of strategies that assure access to transplants regardless of
ability to pay.

II-A.lO.Str.5: DOT will require that the OPTN eliminate all variances in the
organ allocation system, except in those cases where the variance assures
equitable patient access.

64


II-A. 11. Provide adequate resources to DOT to successfully carry out its many
critical missions.

II-A.ll.Str.1: The Secretary of DHHS should request a FY93 budget of $7
million, including at least $3 million to expand and enhance the grants and
contracts program.

65


WORK GROUP II-B: PROFESSIONAL EDUCATION

  Chairperson: Louis J. Kettel, MD
Co-Chairperson: Ellen Heck, MT, MA
Background Paper: Charles Hostetter, MD, MPH
         Phyllis Weber, RN
  Staff Assistant: Philomena Green
Group Members: Sandra E. Conradi, MD
         Lowell W. Hooper
         Dean F. Kappel
         Jackie D. Lynch
          Michelle' Morse, RN, MSN, CCRN
        Gigi Politoski
         Barbara K. Redman, PhD, RN, FAAN
           Ken E. Richardson
         Edith M. Servino, RN
           Jane Warmbrodt

RECOMMENDATIONS

A. GENERAL

For purposes of this series of recommendations health care professionals include
the categories as described by Hostetter and Weber in "Increasing Donation by
Focusing on the Health Care Environment:  Professional Education" (in
                                  t  OV
     v g-10.) The first category includes "those who are already
members of the transplant community, such as transplant physicians and
surgeons, clinical transplant coordinators, and organ procurement coordinators."
The second category includes "those professionals whose roles bring them into
direct contact with the transplant community." Examples here are social
workers, critical care physicians and nurses, trauma physicians, neurosurgeons,
and neurologists." The third category includes professionals such as 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.

II-B.1. To begin immediately and continue into the long-term, the Division of
Organ Transplantation (DOT) should play a facilitative role with practitioners
and educators in each health care profession. Educational goals for organ and
tissue procurement (hereafter referred to as "organ") and transplantation learning
for health care professionals at all levels of preparation should be defined. In

67


order to ensure preparation of those who will teach undergraduates, special
attention should be directed to graduate education in the various professions.
Specific educational approaches should be developed which are appropriate for
each profession. Evaluation of learning appropriate to the specialty should be
included in licensure and certification/recertification requirements. The rapidly
changing environment of organ procurement and transplantation requires the
continued education of established practitioners at all professional levels.

II-B.l.Str.1:  The Surgeon General should encourage utilization of the
existing and proposed curricula developed by UNOS for health professionals.

II-B. l.Str.2:  The Surgeon General should encourage the appropriate
licensing and certifying agencies to include the field of organ donation and
transplant practices in examination development.

II-B.2. In the intermediate term, comprehensive education programs addressing
perceptions, attitudes, and knowledge which are barriers to organ procurement
should be developed targeting physicians, nurses, and hospital administrators.
The foundation for the development of these programs should begin by involving
the target audience in the creation, implementation, and distribution of the
program. The target audience should identify the content and teaching strategies
to be used.

II-B.2.Str.l: The existing model developed by the American Association of
Critical Care Nurses and the National Kidney Foundation to train critical care
nurses in the donation process should be used to develop comparable
programs for the identified groups.

B. RESEARCH

II-B.3. In order to determine effective educational strategies an understanding
of the causes for the present low rate of procurement is needed.

II-B.3.Str.l: Beginning immediately, conduct research studies to inventory
and assess the outcomes of existing formalized educational programs at
undergraduate and graduate levels of health professional training. These
should include, but not be limited to, academic institutions and professional
associations.  Publicize the results and promote the utilization of these
assessments to develop new more effective programs.

II-B.3.Str.2:  Identify the components of OPO programs which lead to
successful practices.

68


II-B.3.Str.3: Study the experience and attitudes of families approached for
donation to determine factors which influence their decision to accept or
decline the option of donation.

II-B.3.Str.3A: Convene a small group of experts appropriate to each
research question. This group or groups will develop the parameters of a
study or studies for subsequent use in developing an RFP with funding to be
identified by the Surgeon General. Simultaneously, the Surgeon General
should publicize the need for research in these areas in appropriate
professional journals.

II-B.4.  In order to develop more successful educational strategies and
operational programs, the Surgeon General should immediately encourage
appropriate agencies (for example, AHA, PHS, OPOs) to collaborate with
hospitals and OPOs to:

1. Identify all potential organ donors through on-going comprehensive
  medical chart review.

2. Report data based on the following categories:

a.  Cases referred to the OPOs who became actual donors and those lost.
Donor loses would be explained.

b. Cases not referred to the OPO.

3. Develop strategies that ensure that all identified potential organ donors
are referred to the OPO. Determine where and from whom referrals
originate and who facilitates or impedes the referral. Identify the cause
of donor losses and propose strategies for improvement.

II-B.4.Str.l: The Surgeon General working through appropriate agencies
needs to assure that policies exist which allow OPOs to accomplish the
actions desired for these recommendations.

II-B.S. In the intermediate term, encourage and solicit publications pertaining
to the legal, moral, and ethical issues relating to organ and tissue donation in
widely read professional journals. Topics should include but not be limited to
the frequency and nature of litigation brought against health care professionals
and to the rights of donor families.

II-B.5.Str.l: The Surgeon General`s office should take a leadership role to
assure the publication of this information.

II-B.6. In order to enhance and promote the professional practice of OPOs, a
study should be conducted within the current year to determine markcting-

69


education and training needs. Based on the results of this survey, the curriculum
for comprehensive OPO marketing and training should be developed in
collaboration with NATCO, AOPO, and UNOS.

II-B.6.Str.l: The Surgeon General should convene a focus group at a
convenient time to determine baseline needs.

II-B.6.Str.2: The Surgeon General should form a marketing and training
advisory group with representatives including, but not limited to, UNOS,
NATCO, and AOPO to develop a content curriculum for the training of OPO
personnel.

II-B.7. Beginning immediately, training focusing on ethnic diversity and cultural
differences should be conducted for OPO staff and key donor hospital staff to
heighten their awareness of these issues.

II-B.7.Str.l: The Surgeon General should identify an advisory group of
experienced trainers in the area of ethnic diversity and cultural differences
who can develop appropriate training materials.

II-B.8.  Beginning immediately, the organ procurement community should
establish a relationship with the local medical examiner/coroner's office and
coordinate efforts to promote mutual professional education. The learning objec-
tive of this mutual education should be the rapid identification of potential
donors who may come under the medical examiner/coroner's jurisdiction in order
that investigation and clearance for donation can occur in a timely manner.

II-B.8.Str.l: The Surgeon General should, through appropriate publications,
express interest and concern for this issue emphasizing that OPOs should be
developing relationships within the medico-legal community.

II-B.9. Other groups crucial in the organ donation process should be targeted
for educational programs. These groups include the clergy, attorneys, and
morticians.

II-B.9.Str. I: The Surgeon General should, through appropriate publications,
express interest and concern for this issue. The Surgeon General should
encourage the transplant community to develop partnerships with these
groups.

70


WORK GROUP III-A: RE-EXAMINING DONOR
CRITERIA: CADAVERIC DONORS

  Chairperson: Nancy L. Ascher, MD, PhD
Co-Chairperson: Leonard Lee Bailey, MD
Background Paper: J. Wesley Alexander, MD, ScD
Staff Assistant: Remy Aronoff
Group Members: R. Randal Bollinger, MD, PhD
         Brian A. Broznick, CPTC
        Mary Beth Danneffel, RN, BSN
         William E. Harmon, MD
         Vernon Henderson, MD
        Linda L. Jones, RN, CPTC, CCTC
        Michael J. Joyce, MD
         Ronald H. Kerman, PhD
         Howard M. Nathan, BS, CPTC
        John F. Neylan, III, MD
        Byers W. Shaw, Jr., MD
         Daniel Whiteside, DDS
        James B. Young, MD

The objectives pursued by Work Group III-A fell into two categories:

1. Increase organ transplantation activity by increasing the pool of
acceptable brain dead cadaver% donors.

2. Increase organ transplantation activity by identifying and utilizing a pool
of non-heart beating donors.

The major motivation is to provide safe organs for transplant patients.

RECOMMENDATIONS

III-A.l. The use of donors at both extremes of age is recommended. Specific
criteria should be developed for each organ.

1114.2. It is recommended that HIV-positive donors not be utilized 10 Protect
recipients against transmission of this disease.

1114.3. It is recommended that Hepatitis B surface-antigen-positive donors not
be utilized.

71


III-A.4 It is recommended that there be acceleration and approval of newer
more sensitive tests for HIV and Hepatitis B infection on the donor population.

III-AS. It is recommended that organs and tissues from Hepatitis C positive
donors be offered and used selectively.

111-A-6. It is recommended that organs and tissues from systemically infected
donors be used selectively.

III-A.7. The medical climate has changed considerably over the past 5 years.
We must consider expanding the donor pool in light of severe donor shortages.
The use of an expanded pool of donors, e.g., those with diabetes, hypertension,
past treatment of cancer, should be considered.

III-A.8. A national study of attitudes toward presumed consent in the U.S.A.
should be conducted.

III-A.9. A pilot project of presumed consent within a subpopulation (such as the
military) should be conducted. This could be supported by a grant from DOT.

III-A.lO. Required referral should be implemented as part of routine hospital
accreditation.

III-A. 11. A pilot project which eliminates the disincentives associated with
organ donation should be conducted under grant or contract from DOT.

III-A.12. A national study of attitudes toward incentives to organ donation in
the U.S.A. is needed. The results could lead to a pilot project on incentives.

III-A.13. Stronger liaisons are needed between OPOs and medical examination
offices to facilitate the organ donation process.

III-A.13. It is recommended that non-heart beating donors be used for
transplantation.

72


WORK GROUP III-B: RE-EVALUATING DONOR
CRITERIA - LIVE DONORS

  Chairperson: Arnold G. Diethelm, MD
Co-Chairperson: Andrea Zachary, PhD
Background Paper: John D. Lantos, MD
        Mark Siegler, MD

Staff Assistant: Gwen Mayes, MMSc, CPTC
Group Members: James F. Childress, PhD
         David J. Cohen, MD
         Barbara Elick, RN, BSN
        M. Roy First, MD
        Michael P. Kaplan, MD, FACS
        Edgar L. Milford, MD
        Barbara A. Schanbacher, RN, BSN
       Aaron Spital, MD
        Vaughn A. Stames, MD
        Mary L. Stoeckle, RN, MSN, CCRN
        David E.R. Sutherland, MD, PhD
       Pedro Vergne-Marini, MD, FACP
        Peter F. Whitington, MD

RECOMMENDATIONS

The work group recommends that:

III-B.1.  The criteria for selection of living donors should consider the
physiologic conditions of the donor rather than the chronologic age. Those
donors who have health conditions which involve minimal risk of morbidity and
mortality may be acceptable. (Policy/Medical criteria)

III-B.l.Str.1:  The Surgeon General develop a position paper about living
donation that addresses the following:

A. reaffirming living donor transplantation
B. re-evaluation of live donor criteria
    - age
    - unrelated live donor
C. medical risk factors
D. issues of consent (especially for those less than the age of eman-
cipation) (Immediate)

73


III-B.;?. Transplant teams should determine that prospective live donors are
competent to consent to or refuse donation, have adequate information to make
an informed choice, and can choose voluntarily without coercion or undue
influence. Donors below the age of emancipation may be considered with the
appropriate safeguards. (Policy/Medical criteria)

III-B.3. Potential live donors receive full and unbiased information about the
short- and long-term benefits and risks of donation. (Education)

III-B.3.Str.l: Overall recommendation for all education recommendations:
Federal funds be allocated to establish a national clearinghouse for education
related to all aspects of organ donation and transplantation. (short-term
within 2-3 years.)

III-B.l. Potential recipients and families receive full and unbiased information
about the short- and long-term benefits of all options for transplantation
including living related and unrelated donors. (Education)

III-B.l.Str.l: The Division or Organ Transplantation, in collaboration with
Federal agencies and transplant-related health organizations, review
educational materials developed for informing patients and families about the
treatment therapies for end stage-renal disease. Additionally, the ESRD
networks should be required to develop a mechanism for verifying that these
materials have been reviewed by patients and families. (ongoing review,
ESRD documentation within l-2 years)

III-B.S. Health care professionals have current information about the appropriate
use of live donors for transplantation in order to adequately provide counsel and
education to potential recipients and live donors. (Education)

III-B.S.Str.1:  Medical and nursing school curriculum currently being
developed by UNOS' Education Committee should incorporate information
about the use of live donors. (immediate-ongoing)

III-B.6 Public education should emphasize the potential benefits and minimal
risks of living donation. (Education)

III-B.6.Str.l: Any national campaigns should include information about
using live donors for transplantation.

III-B.7. Financial disincentives to live donors should be removed. (Poli-
cy/Financial)

III-B.7.Str.l: A work group comprised of representatives from NATCO and
UNOS will study and assess the financial burdens of being a live donor and

74


develop a set of recommendations and strategies to eliminate financial
disincentives to live donation.

III-B.8. Public and private payors should recognize the therapeutic benefits of
transplantation with living donors and not discriminate against these procedures.
(Policy/Financial)

III-B.8.Str.l: The Surgeon General should encourage the Secretary of
Health and Human Services to request HCFA and private payors not to
differentiate between donor source for the reimbursement of an approved
transplant procedure. (Immediate)

III-B.9. An ongoing program of data collection should be implemented to
continue to evaluate the risks and benefits of live donation. (Research/Data)

III-B.9.Str. 1:  Charge the OPTN Scientific Registry with developing a
registry of live donors for long-term follow-up. (Immediate)

75