U.S. GOVERNMENT PRINTING OFFICE

62–366 CC WASHINGTON : 2000

IMPROVING CARE AT THE END OF LIFE WITH

COMPLEMENTARY MEDICINE

HEARING

BEFORE THE

COMMITTEE ON

GOVERNMENT REFORM

HOUSE OF REPRESENTATIVES

ONE HUNDRED SIXTH CONGRESS

FIRST SESSION

OCTOBER 19, 1999

Serial No. 106–77

Printed for the use of the Committee on Government Reform

(

Available via the World Wide Web: http://www.house.gov/reform

(II)

COMMITTEE ON GOVERNMENT REFORM

DAN BURTON, Indiana, Chairman

BENJAMIN A. GILMAN, New York

CONSTANCE A. MORELLA, Maryland

CHRISTOPHER SHAYS, Connecticut

ILEANA ROS-LEHTINEN, Florida

JOHN M. MCHUGH, New York

STEPHEN HORN, California

JOHN L. MICA, Florida

THOMAS M. DAVIS, Virginia

DAVID M. MCINTOSH, Indiana

MARK E. SOUDER, Indiana

JOE SCARBOROUGH, Florida

STEVEN C. LATOURETTE, Ohio

MARSHALL ‘‘MARK’’ SANFORD, South

Carolina

BOB BARR, Georgia

DAN MILLER, Florida

ASA HUTCHINSON, Arkansas

LEE TERRY, Nebraska

JUDY BIGGERT, Illinois

GREG WALDEN, Oregon

DOUG OSE, California

PAUL RYAN, Wisconsin

HELEN CHENOWETH-HAGE, Idaho

DAVID VITTER, Louisiana

HENRY A. WAXMAN, California

TOM LANTOS, California

ROBERT E. WISE, JR., West Virginia

MAJOR R. OWENS, New York

EDOLPHUS TOWNS, New York

PAUL E. KANJORSKI, Pennsylvania

PATSY T. MINK, Hawaii

CAROLYN B. MALONEY, New York

ELEANOR HOLMES NORTON, Washington,

DC

CHAKA FATTAH, Pennsylvania

ELIJAH E. CUMMINGS, Maryland

DENNIS J. KUCINICH, Ohio

ROD R. BLAGOJEVICH, Illinois

DANNY K. DAVIS, Illinois

JOHN F. TIERNEY, Massachusetts

JIM TURNER, Texas

THOMAS H. ALLEN, Maine

HAROLD E. FORD, JR., Tennessee

JANICE D. SCHAKOWSKY, Illinois

———

BERNARD SANDERS, Vermont

(Independent)

KEVIN BINGER, Staff Director

DANIEL R. MOLL, Deputy Staff Director

DAVID A. KASS, Deputy Counsel and Parliamentarian

CARLA J. MARTIN, Chief Clerk

PHIL SCHILIRO, Minority Staff Director

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C O N T E N T S

Page

Hearing held on October 19, 1999 .......................................................................... 1

Statement of:

Byock, Ira, M.D., director, the Palliative Care Center, Missoula, MT;

Dannion H. Brinkley, chairman of the board, Compassion in Action;

Carolene Marks, San Francisco, CA; and Xiao Ming Tian, M.D., L.AC,

Wildwood Acupuncture Center, Bethesda, MD .......................................... 15

Holohan, Thomas V., M.D., Chief, Patient Care Services, Veterans Health

Administration, accompanied by Judith Salerno, M.D., Chief Consultant, Geriatrics and Extended Care Strategic Health Care Group, Veterans Health Administration; Kathleen Buto, Deputy Director, Center

for Health Plans and Providers, Health Care Financing Administration;

and Patricia Grady, Ph.D., Director, National Institute for Nursing

Research, National Institutes of Health ..................................................... 143

Letters, statements, etc., submitted for the record by:

Brinkley, Dannion H., chairman of the board, Compassion in Action:

Information concerning music therapy citations .................................... 68

Prepared statement of ............................................................................... 41

Burton, Hon. Dan, a Representative in Congress from the State of Indiana, prepared statement of .......................................................................... 7

Buto, Kathleen, Deputy Director, Center for Health Plans and Providers,

Health Care Financing Administration, prepared statement of ............... 158

Byock, Ira, M.D., director, the Palliative Care Center, Missoula, MT,

prepared statement of ................................................................................... 20

Cummings, Hon. Elijah E., a Representative in Congress from the State

of Maryland, prepared statement of ............................................................ 2

Grady, Patricia, Ph.D., Director, National Institute for Nursing Research,

National Institutes of Health, prepared statement of ............................... 169

Holohan, Thomas V., M.D., Chief, Patient Care Services, Veterans Health

Administration, and Judith Salerno, M.D., Chief Consultant, Geriatrics

and Extended Care Strategic Health Care Group, Veterans Health

Administration, prepared statement of ....................................................... 146

Marks, Carolene, San Francisco, CA, prepared statement of ....................... 53

Stark, Hon. Pete, a Representative in Congress from the State of California, prepared statement of ...................................................................... 13

Tian, Xiao Ming, M.D., L.AC, Wildwood Acupuncture Center, Bethesda,

MD, prepared statement of .......................................................................... 60

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IMPROVING CARE AT THE END OF LIFE WITH

COMPLEMENTARY MEDICINE

TUESDAY, OCTOBER 19, 1999

HOUSE OF REPRESENTATIVES,

COMMITTEE ON GOVERNMENT REFORM,

Washington, DC.

The committee met, pursuant to notice, at 1:05 p.m., in room

2154, Rayburn House Office Building, Hon. Dan Burton (chairman

of the committee) presiding.

Present: Representatives Burton, Morella, Horn, McIntosh, Ose,

Waxman, Mink, Norton, Cummings, Kucinich, and Schakowsky.

Staff present: Kevin Binger, staff director; James C. Wilson, chief

counsel; David A. Kass, deputy counsel and parliamentarian; John

Williams, deputy communications director; S. Elizabeth Clay, professional staff member; Robin Butler, office manager; Corinne

Zaccagnini, systems administrator; Carla J. Martin, chief clerk;

Lisa Smith-Arafune, deputy chief clerk; Nicole Petrosino and

Heather Bailey, legislative aides; Robert Briggs, staff assistant;

Phil Schiliro, minority staff director; Phil Barnett, minority chief

counsel; Kristin Amerling and Sarah Despres, minority counsels;

Ellen Rayner, minority chief clerk; and Jean Gosa, minority staff

assistant.

Mr. BURTON. A quorum being present, the Committee on Government Reform will come to order, and I ask unanimous consent that

all Members’ and witnesses’ written opening statements be included in the record, and without objection so ordered.

[The prepared statement of Hon. Elijah E. Cummings follows:]

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Mr. BURTON. I want to start off by saying that I appreciate the

hard work that a lot of people have done on this hearing. Beth Clay

was very insistent that we have the hearing today. We had a lot

of other pressing business, but because she was beating me over

the head with a ball and bat, we went ahead and decided to do it.

After reading some of the background information on this and

understanding the issue more thoroughly, I think this is a hearing

that is truly important, much more important than I thought initially. Today we are going to broach a topic that is not easy for

some of us to talk about—dying. Everyone in this room that has

lost someone they loved is concerned about that. While the topic of

end-of-life care may be emotionally charged and difficult to face, it

is a topic that we must have the courage to face, all of us. We can

and must improve end-of-life care and we can do this in several

ways. The most recognized issue in the end-of-life care is pain management, and I am painfully aware of that because last September

and October my mother and stepfather died. Watching them go

through the kind of pain that they endured was very difficult, and

had it not been for a medical assistant that was there administering pain relief, it could have been a lot worse.

In today’s world, with such a wide range of drugs for pain management, why is it that pain is not properly treated? Dr. Ira Byock,

a leader in the field of end-of-life care and the author of the book

‘‘Dying Well,’’ will share with us his observations about pain management and ways to improve end-of-life care including the role of

complementary medicine.

Dr. Ming Tian, a physician and licensed acupuncturist, will share

with us his experience as the doctor the National Institutes of

Health has called on for almost 10 years to treat intractable pain

for patients at the Clinical Center. He will also share insights

about the role of traditional Chinese medicine.

Family members are often faced with daunting challenges: providing care at home, making treatment decisions, working through

the myriad issues of insurance and Medicare, all at a time that

they deal with the emotions surrounding the imminent loss of a

loved one.

Mrs. Carolene Marks recovered from cancer by using alternative

medicine. After her experience, she used what she learned to begin

helping other women dealing with cancer. She served 4 years in

the National Institutes of Health’s Alternative Medicine Program

Advisory Council. She continues to work with academic institutions

in the San Francisco area to hold alternative medicine conferences

to make information available to women who are facing breast cancer. She is also the wife of the late Milton Marks, who served for

many years in the California State Senate. Today, she will share

with us her personal insights, including complementary therapies

in her husband’s care.

Typically, when one thinks of end-of-life care, one thinks of the

hospice program. Elizabeth Kubler-Ross made ‘‘hospice’’ a household word with the publication of her book, ‘‘On Death and Dying.’’

In her book, she lambasted the medical community for its lack of

compassion and inability to care for the dying patient appropriately. The importance of compassionate care is immeasurable.

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Has that changed since the publication of her book back in the

1960’s?

Hospice care is a special kind of care designed to provide comfort

and support to patients and their families in the final stages of a

terminal illness. Hospice care seeks to enable patients to live their

remaining days in an alert and pain-free manner, with symptoms

under control, so that those last days may be spent with dignity,

at home or in a home-like setting surrounded by people who love

them. Hospice care neither speeds up, nor slows down, the dying

process. It does not prolong life and it does not hasten death. It

merely provides a caring presence and specialized knowledge of

medical care, psychological care, and emotional and spiritual support during the dying process in an environment that includes the

home, the family and friends. Hospice services are provided by a

team of trained professionals, doctors, nurses, counselors, chaplains, therapists, social workers, aides and volunteers, who provide

medical care and support services not only to the patient, but to

the patient’s family and caregivers. Bereavement care is critical to

supporting surviving family members and friends. A key component of the hospice team is the hospice volunteer. These individuals

receive special training and assist medical professionals by visiting

the terminally ill, providing respite for family members, and by

simply being a compassionate, loving presence.

Mr. Dannion Brinkley is the chairman of the Board of Compassion in Action, an organization that trains hospice volunteers as

well as provides community and professional education about death

and dying issues. Mr. Brinkley has served tirelessly for over 20

years recruiting, and now training, hospice volunteers. As the author of two international bestsellers, ‘‘Saved by the Light’’ and ‘‘At

Peace in the Light,’’ and as a motivational speaker, Mr. Brinkley

travels the world sharing his personal story and helping others

overcome their fear of death. He has been credited over the years

with recruiting over 20,000 volunteers. Through his own personal

experiences and research, Mr. Brinkley has become an advocate for

integrating complementary and alternative therapies into our

health care system. Compassion in Action provides hospice volunteers to veterans’ hospitals across the country.

Of particular focus today will be the end-of-life care for our veterans. As we grapple with veterans’ issues like Agent Orange and

Gulf War Syndrome, we must also remember those who served in

the World Wars earlier in this century. These heroes are the ones

that stormed the Normandy Beaches on D–Day and raised the flag

atop Mount Suribachi on the island of Iwo Jima, and deserve quality care as they face their last days.

This is something that just amazed me: 134 World War II veterans will die during the time it takes to hold this hearing today.

Did you know that? Just in the time we are going to hold this hearing, 134 of them are going to die. Thousands die every month and

I think you are going to talk about that, Mr. Brinkley.

Is the Veterans Health Administration providing adequate care?

Is there a difference in the quality of care a veteran would receive

from a local hospice or the veterans end-of-life program? Dr. Thomas Holohan from the Veterans Health Administration is here to tesVerDate 11-MAY-2000 08:06 May 22, 2001 Jkt 071843 PO 00000 Frm 00009 Fmt 6633 Sfmt 6602 E:\HEARINGS\62366 pfrm12 PsN: 62366
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tify about these programs and is accompanied by Dr. Judith

Salerno.

Mrs. Kathy Buto will present information about Medicare coverage for hospice programs on behalf of the Health Care Financing

Administration.

In March 1998, the National Institute of Nursing Research

issued a report on managing symptoms at the end-of-life. Dr. Patricia Grady, Director of the Nursing Institute, will testify about the

research funded by the National Institutes of Health on palliative

medicine and end-of-life care including complementary therapies.

She will also discuss treatment and stress management options

made available to Clinical Center patients and their families.

There are many complementary therapies that can be extremely

helpful for end-of-life care. They include music therapy, acupuncture, aromatherapy, massage, and guided imagery, and today we

will learn more about these important complements to end-of-life

care.

This week in Congress, we are scheduled to vote on H.R. 2260,

the Pain Relief Promotion Act of 1999. I am proud to be an original

cosponsor of that bill. This bill recognizes the importance of good

pain management and the necessary and legitimate use of controlled substances in pain management and other care. The passage of this bill will require the Department of Health and Human

Services to develop and advance the scientific understanding of palliative care, the development of practice guidelines, and better education on these issues. Through increased research and education,

we can find better and more compassionate ways of relieving pain

for those in terminal conditions, including complementary therapies.

It is my hope that this hearing will broaden our understanding

of these very important issues and I now recognize my colleague,

Mr. Waxman, for his opening statement.

[The prepared statement of Hon. Dan Burton follows:]

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Mr. WAXMAN. Thank you very much, Mr. Chairman. I am

pleased you are holding this hearing. Individuals who are at the

end of their lives deserve the same level of attention and care as

do individuals who have longer life expectancies. Our country is a

world leader in medical research and technology, and with every

day, we achieve advances in treatments for terminal diseases. Nevertheless, many people in this country are not able to obtain the

quality of life and care, that they and their families should expect,

in the last stages of their lives.

Many people have been working to increase our understanding of

steps that policymakers, health professionals, volunteers, family

members, and others can take to help improve the quality of life

for individuals at the end of their lives. Today’s hearing provides

an opportunity to continue this effort. Some of today’s witnesses

are caregivers who will share their personal experiences and insights regarding the end-of-life care. We will also hear from government representatives about ongoing efforts at the Veterans Health

Administration, the National Institutes of Health, and Health Care

Financing Administration to research and support end-of-life care.

This discussion will provide valuable insights regarding the status of end-of-life care in this country and efforts and initiatives we

should continue to explore. I join my colleagues in welcoming these

witnesses and I look forward to their testimony.

I would also like to comment on the bill, Mr. Chairman, that you

referenced that is going to be on the House floor this week. That

bill came out of the Commerce Committee where I sit as a member

on the Health and Environment Subcommittee. One of the great

concerns I have with that bill, is that it would leave to the Drug

Enforcement Agency the determination of whether the use of any

particular drugs might hasten the end-of-life even though they are

intended for use for palliative care. And I worry, as do many health

professionals, that they will be intimidated and refuse to use drugs

that will ease the pain that terminally ill patients are suffering

from, for fear that they may be prosecuted for violating the law.

We have to be very careful about that. I think most Members,

at this point, do not realize that there is that provision in there

that is so troublesome to most of the health professionals who have

looked at this legislation. We need to make clear, as that legislation tried to do, that Congress need not endorse assisted suicide in

order to make sure that we provide all that is necessary to afford

people palliative care.

In fact, it is quite inconsistent to talk about wanting to prevent

suicides and then not give people the ability to control their pain

because that is the major reason why people despair and contemplate, if not, in fact, take actions to end their lives. I also want

to note that two of the witnesses today, Mr. Dannion Brinkley and

Mrs. Carolene Marks, are from my home State of California and I

want to welcome them to the hearing today. I want to thank them

for making the trip to Washington.

As so often happens, we have our schedules in conflict, so I am

not going to be able to be here for the whole hearing. I will be in

and out. But the testimony that we will receive will be in the

record and we will be able to share it with all of our colleagues.

We have, of course, the written statements in advance, but the reVerDate 11-MAY-2000 08:06 May 22, 2001 Jkt 071843 PO 00000 Frm 00015 Fmt 6633 Sfmt 6602 E:\HEARINGS\62366 pfrm12 PsN: 62366
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sponses to questions I think will be very, very helpful for our colleagues to understand this issue.

I do not know that any committee has ever held a hearing on

this subject so I am pleased, Mr. Chairman, that you have taken

this issue on so that we could give a public airing to what I think

are very, very important matters. Might I ask, our colleague, Congressman Pete Stark, asked me to see if he could insert a statement into the record?

Mr. BURTON. Yes, without objection, so ordered.

[The prepared statement of Hon. Pete Stark follows:]

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Mr. BURTON. Mrs. Mink, did you have an opening statement or

any comments?

Mrs. MINK. If I might make just a brief rejoinder to my ranking

member.

Mr. BURTON. Sure.

Mrs. MINK. I would like to concur with his sentiments, particularly in reference to the bill referred to as the pain management

bill that is coming up on the floor. I agree totally with his remarks.

I have very, very grave concerns that we are emphasizing again the

law enforcement end of this problem rather than really paying attention to the needs of the patients in terms of pain amelioration.

We are now going to put once again the Drug Enforcement people

in charge of the end-of-life and I have very, very grave reservations

about voting for such a bill. Thank you, Mr. Chairman.

Mr. BURTON. Thank you, Mrs. Mink. I would just like to share

with the folks who are listening a conversation I just had with Mr.

Waxman. After having experienced this just last year with my

mother and father, I hope that there is not some ambiguity in the

bill that can’t be corrected because without that pain management,

unless you have gone through it and seen somebody dying, you do

not realize how important that is. Let’s work together to see if we

can’t do something about that, and I will be happy to work with

you in that regard.

Mr. WAXMAN. I welcome that. Thank you very much.

Mr. BURTON. Would our first panel come forward, Dr. Byock, Dr.

Tian, Mrs. Marks, and Mr. Brinkley? As is customary, we swear in

our witnesses.

[Witnesses sworn.]

Mr. BURTON. We will start with you, Dr. Byock.

STATEMENTS OF IRA BYOCK, M.D., DIRECTOR, THE PALLIATIVE CARE CENTER, MISSOULA, MT; DANNION H. BRINKLEY,

CHAIRMAN OF THE BOARD, COMPASSION IN ACTION;

CAROLENE MARKS, SAN FRANCISCO, CA; AND XIAO MING

TIAN, M.D., L.AC, WILDWOOD ACUPUNCTURE CENTER, BETHESDA, MD

Dr. BYOCK. Thank you, Mr. Chairman. Mr. Chairman, Congressman Waxman, thank you for inviting me to give testimony about

improving end-of-life care. I am testifying today as an individual,

not on behalf of any institution or organization. I have worked as

a physician in the field of hospice and palliative care since 1978

and have over those years served on numerous committees including the ethics committees and task forces of national hospice and

palliative care organizations and I am a past president of the

American Academy of Hospice and Palliative Medicine.

I am currently a research professor of philosophy at the University of Montana and a member of the Practical Ethics Center there

and principal investigator for the Missoula Demonstration Project,

a long-term community-based effort to improve the quality of endof-life care, as an example of what might be possible in communities nationally.

There is no greater urgency facing American society than relieving the crisis that surrounds dying and care for the dying in our

country. The Institute of Medicine’s landmark report, Approaching

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Death, details the severity and pervasive nature of this crisis.

Dying patients and their families have known this for a long time.

Even within otherwise excellent medical institutions, pain and

physical suffering among dying Americans remains inadequately

controlled, and if we are honest, inadequately addressed.

In addition, most Americans still die in institutions, approximately 60 percent in hospitals, and some 20 to 25 percent in nursing homes, though all Americans state on surveys that they would

like to die at home. Patients’ preferences for care still often go

unhonored even when those choices are clearly conveyed. As if all

that were not bad enough, our current health care system routinely

pauperizes people and their families for being chronically ill and

not dying quickly enough.

Cultural denial marks the confused and conflicted way our society approaches life’s end. We are terrified of being ill, being physically dependent on others, and being in pain. We worry about

being a burden to those we love. There is a deep resulting fear and

deep frustration and anger that has arisen that fueled the assisted

suicide movement. Unable to face the stark reality of the end-oflife crisis, many people in our country have embraced legal assisted

suicide as a quick fix that would allow us to avoid the dark and

twisted roots of this crisis.

There is actually a precedent from the history of pediatrics that

is pertinent here. In the late 1940’s, our Nation awakened to a silent epidemic of pediatric failure to thrive. Rene Spitz and his colleagues studied foundling homes in which orphans were cared for

and found that mortality was alarmingly high, up to 80 percent in

some institutions, and profound development retardation universal.

Babies were being fed, cleansed, swaddled and they lay untouched

until it was the next time to be fed or have their diapers changed.

The key deficiency was the lack of human interaction. Spitz described the blank, listless stares of infants. The expressionless

faces of too many elderly residents in America’s long-term care facilities call these studies to mind. They too, are often untouched

unless they are wet or it is time to be fed. We have an epidemic

today of geriatric failure to thrive in America. The public is only

now beginning to grasp the nature of the problem or its breadth.

Nevertheless, the problem grows daily.

Just as another example, today’s aides in America’s home health

and long-term care industries are woefully underpaid and overworked. The graying of America will accelerate dramatically during

the years 2010 to 2030 as the baby boomers turn 65. By the year

2030, 75 million Americans will be over the age of 65, almost 20

percent of the population. In addition, there are currently 40 million Americans living with chronic illness and some disability.

Some estimates have that figure tripling by the middle of the next

century.

Meanwhile, private caregiving resources within our own individual networks of relatives and close friends is rapidly falling. Social trends including geographic mobility, smaller families, and two

working adult families, have all contributed to this decline. Already

families struggle to provide the sort of day-to-day, hour-to-hour,

minute-to-minute care that we all want for our loved ones.

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I shudder to think of how hard it will be when it is my generation’s turn to be cared for and our children’s turn to provide care.

Today, family caregiving represents the unrecognized backbone of

health care in America. It is an enormous resource that must be

supported and expanded as we grapple with this crisis. Currently,

it is estimated that almost 26 million Americans spend an average

of 18 hours per week caring for frail relatives. The economic impact

is estimated to be $196 billion per year, more than formal home

health care and nursing home care combined.

Seventy-three percent of these caregivers are women. Most of

them give care for an average of 41⁄2 years, but some as many as

10 or more years. Many report significant physical and emotional

stress from caregiving. These well-documented facts compel us to

look beyond formal medical care to the care given by family members and provided by the ill person’s community.

Hospice is a bright spot in this otherwise gloomy landscape, a

hopeful beacon that exemplifies what we can achieve. Excellent

hospice programs have provided us with a best practice standard,

a benchmark against which to gauge the outcomes of our clinical

and policy efforts. But hospice is wrestling with problems itself.

Only 20 percent of dying Americans receive hospice care and for a

rapidly diminishing period of time.

The Medicare eligibility criteria has severely limited access to

persons whose diseases such as congestive heart failure or emphysema or Alzheimer’s and other senile dementias are characterized

by a prolonged or stuttering disease trajectory.

More recently, the Office of the Inspector General’s Operation

Restore Trust has sent a chill through the American hospice programs. Hospice administrators and medical directors are worried,

and with good reason, that if they admit patients whose slowly progressive, though ultimately terminal, illness, caused them to live

beyond a few months, the program may be investigated for fraud

for having admitted the patient at all.

Many programs now feel compelled to discharge patients who

have become relatively stable under the comprehensive care that

hospice provides and yet away from hospice care these same patients decline more rapidly and often die shortly thereafter. This is

ethically and socially troubling and unnecessary.

It is worth recalling that in 1989 OBRA legislation, Congress

added an unlimited fourth benefit period to the Medicare hospice

benefit and the 6-month prognostic criteria was softened with statutory language that added ‘‘if the disease runs its normal course.’’

Both actions were taken in recognition of the medical uncertainty

regarding prognostication and in an attempt to address the reluctance of physicians to refer to hospice or the tendency to refer far

too late. Instances of fraud and abuse should be vigorously pursued

and prosecuted, but oversight programs must be conducted with an

awareness of the social context and potential unintended consequences of these actions.

Government programs to uncover abuse and responsibly administer public funds must also preserve fair and equitable access to

critically needed services by dying people. The most maddening aspect of this crisis in end-of-life care is that it need not exist. Dying

is inherently hard but it need not be horrible. What we currently

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lack is a firm commitment on the part of the health care system

to bring the power of medicine to bear in service of comfort and

quality of life.

Palliative care can be provided earlier in the course of a person’s

illness. By managing symptoms and helping people address difficult but normal psychosocial and spiritual concerns and assisting

with the coordination of medical and supportive services, palliative

care can dramatically improve the quality of life for persons and

families.

Beyond assurance of relative comfort, people need not die alone.

Many times the calm and caring presence of another person can

soothe a dying person’s anxiety and distress. But comfort and companionship are still not all there is. Over the years patients and

families have taught me a surprising truth: that this stage of life

holds remarkable possibilities. When people are relatively comfortable and know that they will not be abandoned and will not be

allowed to become too heavy a burden on their families, they frequently use the time to strengthen bonds and complete relationships with the people that they love and create moments of profound meaning.

With basic good care, complementary therapies have a wonderful

contribution to make. The one that I most often use is simply eliciting and listening to people’s stories. In the process of life review,

people often achieve a better sense of meaning about their own life,

their struggles and regrets, their triumphs and joys, and also attain a deeper sense of the meaning of life in general.

A number of complementary therapies represent resources for

inner growth. A person’s culture, values, beliefs, and temperament

will all influence which if any of these practices will be helpful.

This one national crisis has a solution that need not cost more

money. When the basics of good medical and supportive care are

provided, families are able to take care of their loved ones at home.

That is what both families and patients want. Because dying people are by definition the sickest patients in our health care system,

their care will never be inexpensive. Indeed, as comprehensive as

it is, we can serve dying patients and their families and our country through the expanded use of hospice care which is significantly

less expensive than care in its absence.

This high tech curative care that we provide is quite expensive.

As people are confident that they can receive hospice care if we

were to remove the terrible choice that is currently imposed by the

eligibility criteria, people are more able to accept that they are

dying, and stay at home. The either/or approach to the current

Medicare reimbursement for hospice is built on an untested assumption: that providing life prolonging and palliative care together would be too costly.

The experience in Canada and Britain would strongly challenge

this assumption. The field of palliative care has advanced dramatically in recent years, and as you will hear, is continuing to advance

rapidly. Reimbursement structures and government policies have

not kept pace. Government has a role in this crisis, has a role in

resolving this crisis.

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First, the formal audit of prevailing statutory limitations and

regulatory policies regarding access to needed services and quality

of care for people who are dying is urgently needed.

Second, creative models of delivering care have been developed

and are ready for further testing. Demonstration projects such as

those provided in Senators Rockefeller and Collins’ Advance Planning and Compassionate Care Act of 1999 would be a major start.

Third, government can help by ensuring that medical education

includes sufficient content in symptom management and the core

skills of communication and ethical decisionmaking. These are not

elective subjects.

Fourth, the compensation of aides in our Nation’s home health

and long-term care programs must provide them with a living wage

and their own health benefits. Staffing must be improved so that

aides have the time to care for residents.

Fifth, America’s families are already giving their fair share in

caring for their loved ones. Many are doing so at the cost of their

own health. They deserve our support. Government can provide tax

breaks for caregivers as they care for their loved ones, and as one

of the Nation’s major employers, can model flexible workplace and

health benefit policies, setting an example for the industry.

As someone who has actively opposed the legalization of physician assisted suicide for years, I can tell you that opposition to legalization of physician assisted suicides sounds shallow and insincere unless it is wedded to a constructive program of caring that

includes increasing the number of health care professionals who

are able to provide skilled care.

While government does have a role to play, ultimately this is one

national crisis that cannot be fixed by government alone. The communities of our Nation’s neighborhoods, workplaces, schools, and

our faith communities, all have critical roles to play. Each of us,

as friends, coworkers, and neighbors, can reach out to those we

know who are dying and to their families we know are struggling

to provide care.

We can reach out to strangers as well. Compassion in Action’s

Twilight Brigade of Volunteers, which we will hear about, is an excellent example of what can be achieved. Stephen’s Ministry, Parish nursing programs, the Care Team Networks offer American

faith communities and workplace communities and neighborhoods

examples of strategies that work.

In conclusion, we are in the midst of a real crisis in end-of-life

care. But we have an opportunity to transform the way American

society approaches the inevitable end of life. Before we allow our

society to recognize a so-called right to preemptive death, we must

honor a basic human right—to die in relative comfort, in the presence of caring people, and in a clean, dry bed. The real solution to

the crisis of care for the dying ultimately will emerge one person

at a time, by treating people in medically competent, genuinely caring, and even loving ways, allowing them to feel wanted, worthy,

and dignified even in their terminal frailty and their physical dependence. Thank you, Mr. Chairman, for the opportunity to give

testimony today on this most important topic.

[The prepared statement of Dr. Byock follows:]

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Mr. BURTON. Thank you, Dr. Byock. I appreciate your testimony

and your entire statement will be included in the record and we

will look at that. We will have some questions for you. If we could

keep our comments close to 5 minutes, I would really appreciate it.

Mr. Brinkley.

Mr. BRINKLEY. Well, first, I would like to say I am from South

Carolina, but I work in California. Everything that Ira said is exactly what I was going to say, so I have really nothing to say, and

I will read through this briefly.

Good afternoon, Mr. Chairman and members of this committee.

I am honored to be here to discuss improving care at the end of

life for all Americans, but especially veterans. I appear before you

today as the chairman of the Board of Compassion in Action and

also appear before you today as an advocate of integrating alternative and complementary therapies.

Compassion in Action is a nonprofit organization. At the core of

our mission statement is our conviction that no one need die alone.

And to this end, we recruit and train volunteers to serve at the

bedsides of those who are nearing the end of life. In addition, we

respond to the needs of community and professional education on

the subject of death and dying through lectures, workshops, and

seminars.

We have volunteers serving in 17 cities, and I am happy to report that we are now fielding questions from countries all over the

world. I have personally served as a hospice volunteer for over 20

years. I have been a part of the end-of-life care team for over 270

individuals, and personally held in my own arms 176 persons

breathing their last breath, one of these my mother. So my heart

goes out to you and my understanding, Mr. Chairman, exactly

where you are and why I am really proud that we are able to come

and face this at such a short time after your loss.

I can tell you that volunteers are an integral part of the vital

part that the hospice circle of care takers. The Veterans Administration itself has over 350 volunteer service organizations, 110,000

volunteers. We are making the difference now in the VAs. With the

issues that we are about to deal with, the volunteer can be there

when professional staff cannot. The Compassion in Action team are

comfortable with a broad range of emotional and spiritual issues

from the most basic to the most profound.

Compassion in Action volunteers are carefully trained to be

skilled listeners, much like Dr. Byock said, because listening is the

greatest gift we can offer any other human being. Because they do

not get paid for their services, it is very clear that they are there

to serve for reasons of the heart. Did you know that over 32,000

World War II veterans will leave this world every month, and by

the year 2001, the number will increase to over 40,000 per month,

and that is just our World War II veterans?

Without volunteers, careful management and cost-effective measures, this system could be dangerously close to collapsing. Senator

Thurman and Congressman Floyd Spence, leaders on the Veterans

Administration appropriation on both sides of the Senate and the

House, and old family members, are aware of these issues. But

Compassion in Action volunteers can see things that they cannot.

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With the help of my old friend, and my Congressman, Lindsey

Graham, we are working very closely with these legislators to assist in developing appropriate programs to effectively bring forth

the desired solutions in end-of-life care. The sad fact is too many

veterans are dying alone. I find this totally unacceptable and I am

dedicated to changing this. These men and women were there for

us when we needed them. We must be there for them at this critical time.

For this reason, Compassion in Action established a partnership

with the Veterans Administration and, in fact, our national headquarters are located on the campus of the West Los Angeles VA

Administration. And that happens to be Congressman Waxman’s

district. Our volunteers are now serving in VAs in Chicago, Atlanta, Seattle, San Diego, Spokane, Sacramento, Palo Alto, and Los

Angeles.

We are determined to create a volunteer corps, the Twilight Brigade, trained disciplined troops that will serve dying veterans

across the country. Our veterans hospitals are filled with men and

women who are facing death. Many have no family or friends to

visit them. Imagine a veteran lying there, very near the end of life,

so sick that he can no longer speak. His only visitor has been a

Compassion in Action volunteer. One of those volunteers noticed

that a brother and daughter, listed in his chart, with a notation

that they have been estranged or pushed apart for over 15 years.

Asking permission from the staff, the volunteer contacted the family member explaining the situation and asked if they would be

willing to say a few words to this man in his desperate need. They

both agree. Holding the phone to a patient’s ear, the volunteer

watched as tears slid down his cheeks, hearing healing words being

spoken. Hours later he took his last breath and left in peace. This

is reality and this happens everyday. It is where the volunteer

truly serves, and I hate to say, volunteers and hospice are alternative and complementary medicine in our present medical system.

A lot of people wish and say, I just wish I had 5 more minutes.

We are trying desperately in Compassion in Action to create the

arena where just 5 more minutes becomes an institution. But the

picture is not always as bright as this. Here are some things we

have heard from volunteers across the country.

Because of frequent rotation of interns and residents, there is a

serious discontinuity in patient care within the veteran facilities;

pain management is less than optimal and there have been times

when veterans have truly died unnecessarily. I have to agree with

the two committee members about putting the DEA in control of

the quality of end-of-life care. They cannot legislate legal control of

a doctor’s ability, and it takes a good critical care doctor to understand it—just what you went through. I am sorry that the DEA

and law enforcement agencies get a little territorial in these issues,

because it should be the health care professional’s job, and I hope

as you said earlier, Mr. Chairman, that these issues can be worked

out.

The dying are kept in rooms where noise levels are so high, radios, televisions blaring, the individual cannot even die peacefully.

Inadequate discharge planning often leaves veterans and their

loved ones totally unsupported. Well intentioned nurses cannot

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serve their patients adequately, due to serious understaffing and

worst of all, patients that are moved either within the hospital or

to a facility off the grounds of the hospital when they are actively

dying. In some VAs, the nurse-patient ratio is completely unacceptable.

These are grave problems, and anyone concerned about the quality of end-of-life care of our veterans, must address them. Compassion in Action can play a part in this solution, and I am pleased

that a new executive officer in Congressman Waxman’s district,

Phil Thomas, at the Greater Los Angeles VA, has ordered a focus

group meeting with our volunteers to identify these problems and

to seek viable solutions.

There are now many VA administrative chief executive officers

that are reaching out and looking for these answers. I would like

to mention some of the people who have helped me very, very much

in the VA: James Delgado, the National Volunteer Coordinator;

Bonnie Ryan, National VA Hospice Administrator; Beverly Fitzgerald of the West Los Angeles VA; and many other staffs in the

other places we are working.

As a man who has been twice struck by lightning, survived heart

failure, open heart surgery, three ruptured subdural hematomas,

and brain surgery, and after that having a massive grand mal seizure, I have some idea of what the personal experience of end-oflife care that people go through. I am one of these people. I am one

of the people who went into hospice, but by the grace of God and

good medicine, both complementary and conventional, I sit before

you today. I have a personal interest in this because I am one of

these people.

I know it is as important to look up at that acoustical ceiling in

a hospital as it is to look down at that person. And I wanted to

let everyone know that what I have learned through these experiences, is death is not to be feared. However, sometimes the path

there is a tortuous hell. Three years ago, as I lay again in a hospital intensive care unit, I became very much aware of the quality

of end-of-life care, the noise, the inadequate pain management, and

the problems that people are going through. We need healing,

peaceful, relaxing environments, and wellness can be achieved even

when dying. Emotional, spiritual and relationship understanding

can be effectively used to improve end-of-life care.

Almost 10 years ago, I participated in the planning of the Office

of Alternative Medicine at town meetings and then at Chantilly,

VA for the leading alternative medical experts. As a result of this

report, what is commonly known as the ‘‘Chantilly report,’’ the National Institutes for Health outlined complementary and alternative advisory programs. I have also attended, all but two, advisory committees over the last 8 years. I missed one because of

brain surgery and another because of a hurricane. I think that this

has to be looked at more and more, and I find that the last 10

years of this has been woefully inadequate. More has to be placed

upon this.

There are complementary and alternative therapies that can be

very helpful. Acupuncture has been proven valid with chemotherapy nausea and pain management. A sense of calm is incorporated through things like music and aromatherapy. Therapeutic

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touch and even prayer expressed by Dr. Larry Dossey, a two tour

MASH combat veteran and a combat surgeon, and his wife, who is

a doctor of nursing, doing research in alternative measures. The

power of the human touch is invaluable. Just think how wonderful

it would feel to know that someone would just hold your hand and

listen, massage your feet, and the only other touch you ever get is

somebody rolling you over administering some type of medicine.

Guided imagery and visualization are very helpful in pain reduction and stress reduction. Music therapy and guided imagery have

been shown to be effective in trauma recovery and grief recovery,

in rape and abuse cases. Surely it can help a family in stress. And

I think probably the most important treatment is not a treatment

at all. It is the life review. This is important for someone to review

their life, talk about their childhood, marriage, birth of their children, their life as a veteran and also maybe some other not so important issues.

This is a time for people to have a healing path between relationships. Compassion in Action volunteers are carefully trained in closure technique. Closure is one of the most important complementary therapies for both the patient leaving this world, and those

staying behind, and I cannot emphasize closure enough. I would

like for people to really pay attention to the fact that these are

going to be the issues over the next 4 and 5 years. This is where

it is going to be, and that people who could not look at death, will

look at death now, because it is their moms and dads, their brothers and sisters and their friends.

Look at No. 1 best selling books like ‘‘Tuesdays with Morrie,’’ which is the study of a gentleman going back to his professor and

reliving his life together. The fact that that book has stayed in the

top 10 bestsellers list for the last year tells us we are looking at

this. It was recently made into a television movie by the Oprah

Winfrey Production Co. that will air on NBC. This shows us that

this will be one of the campaign issues. This will be what we will

look at.

Another thing that is very interesting is the time we are living

in this country we are facing the turn of a century and the turn

of a millennium. We have estimated that our health care costs are

going to double by the year 2007. In the coming years, the geriatric

population is going to outnumber those 18 and under. What this

means, is that we are a Nation in need to prepare for when it will

become our time for end-of-life care. No one wants to think about

death, and doctors, typically, are not terribly comfortable discussing with the patient, that the time has come to change from

aggressive curative measures to palliative measures.

This is why many doctors wait until the last minute, sometimes

only days prior to death. It is also a huge chunk of medical expenditures that come in the last 3 weeks. I think a study by the NIH

of the opinions of critical care doctors and how they manage this

burden could be very effective in changing this paradigm.

Over the last years, I have seen and been helped, by a lot of people in the NIH, in Congress, in the Office of Alternative Medicine,

and just people looking to try to understand how to help each

other. I am very grateful to you, Chairman Burton, for your courage in opening up this discussion. I am very thankful to you, Mr.

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Waxman, for what you are doing. We must face our own mortality

before we can help those whom we love and who have loved us face

theirs.

I am truly thankful for this committee’s historic act. By raising

the awareness in Washington about these issues, we can find and

begin to see the solutions. In the military, we are trained never to

leave our wounded buddies on a battlefield. These World War II

veterans never deserted this country in its time of need. We cannot

desert them. I thank you.

[The prepared statement of Mr. Brinkley follows:]

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Mr. BURTON. Thank you, Mr. Brinkley.

Mr. WAXMAN. Mr. Chairman.

Mr. BURTON. Yes.

Mr. WAXMAN. Before you call on Mrs. Marks, I am going to be

called away to a meeting. I am going to stay here for your testimony, but I just want to say to you that Milton was a good friend

of mine, as you know. We served together in Sacramento and we

had many talks, and I realize what a support you were to him

while he was doing his job as a legislator. I read your testimony

and he had you there with him caring about him to the very end.

I just want to tell you how pleased I am that you are here to share

your insights with us. I wanted you to know that.

Mrs. MARKS. Thank you.

Mr. WAXMAN. Thank you, Mr. Chairman.

Mr. BURTON. Thank you, Mr. Waxman. Mrs. Marks, would you

pull the microphone close so we can hear you?

Mrs. MARKS. I am smaller than the rest of them.

Mr. BURTON. Beg your pardon?

Mrs. MARKS. I am smaller than the rest of them but bigger in

what I do.

Mr. BURTON. You are prettier, too.

Mrs. MARKS. It is a pleasure to be here with you, Mr. Chairman.

And I particularly wanted to mention you, Congressman Waxman, because my husband thought so highly of you and you shared

many goals together and I am glad you are still here fighting.

Thank you for the opportunity to speak about improving care at

the end of life with complementary medicine. It is a subject that

is close to my heart, since I have found it effective in monitoring

my health and in preserving the length and the quality of life for

my husband, Senator Milton Marks.

I give tribute to his courage which gave us strength. By making

the choice to utilize complementary alternative medicine, which is

called CAM, the patient and the family feel empowered, which is

beneficial in itself. But there are questions that the medical profession and patients must ask. For example, does miso soup, a central

part of the macrobiotic diet, really help stave off cancer? Do the

phytoestrogens in soy truly benefit heart disease? Oftentimes if we

think so, they do. Although some substantive studies are being undertaken, such as the one Dr. Debu Tripathy is spearheading at

the University of California San Francisco, regarding effectiveness

of Chinese and Tibetan medicine as well as others by the NIH and

the National Foundation for Alternative Medicine, headed by your

former colleague Berkley Bedell, there is, as yet, no scientific proof

of complementary medicine’s efficacy, but there is other proof.

Complementary indicates working with conventional mainstream

medicine while providing other interventions. Increasing numbers

of health care institutions are utilizing such methods of health delivery which patients are demanding. At least 42 percent of people

in this country are incorporating CAM in their health care, spending almost $30 billion out of pocket every year.

The number of visits to alternative practitioners exceeds total

visits to primary care physicians according to the Journal of the

American Medical Association which has also stated that prayer is

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healing even when the patient, as was the case with my husband,

does not know that prayer is offered.

For years, chemotherapy was unproven but utilized. Chemotherapy, one of the central cancer treatments, often is not effective.

Then why would anybody reject alternative treatments that are effective and improve the quality of life? No one questions insurance

coverage for chemotherapy, but there is resistance to coverage of

all but a few modalities of complementary medicine. We are struggling to determine whether CAM is merely palliative in terms of

symptoms or whether such interventions alter the biologic force of

a disease.

I personally determined that it is effective in both ways in the

last years of life when my husband was battling diabetes, heart

and renal failure, as well as other major ills. When his internist

said he was the sickest patient he had ever seen who was not hospitalized, and when his cardiologist despaired for his life, we maintained his life with quality, dignity, and incredible length. He received constant aggressive care from the best doctors in the world

who respected our zest for complementary medicine and encouraged us to bring practitioners to his hospital bed.

They marveled that this treatment seemed to prolong his life.

The medical system, while continuing incredible care, had given up

hope. I am convinced that the complementary treatments gave the

extra fillip to extend his life.

When he was admitted to the hospital in his next to last ordeal,

the clinical nurse said coldly, Mrs. Marks, I had to let my mother

go to the other side; you should let Senator Marks go, too. My response was that it was not my decision. It was up to God and my

husband. She would not talk with me until his final admission

when she indicated that we had proven her wrong.

My husband received regular acupuncture treatments, massages,

visits to a healer, and Jin Shin Jytsu, Japanese acupressure. His

diet was changed to avoid foods harmful to his condition. Before entering the hospital, he became part of a support group. He participated in the Dean Ornish program of stress reduction, exercise,

and diet. He visualized that his health was improving, and explored aromatherapy and healing music, which gave constant healing in his hospital room thanks to Dannion Brinkley, and one of

his friends, Steven Halpern.

He wore an appropriate crystal. He consumed quantities of nutritional supplements, strong antioxidants, and various Chinese

herbs. But we have to bear in mind they are costly, thereby eliminating a large segment of society from benefiting. Insurance paid

nothing for the supplements, but reimbursed for part of acupuncture and the Dean Ornish program, Ornish only after a long battle

with the insurance company. When Milton broke his shoulder,

western pain medication made him hallucinate. We substituted

Chinese herbs. The pain vanished. The hallucination ceased.

We did not approve painful dangerous conventional procedures.

The floor nurses applauded our approach. The home health care

nurses were disparaging. They created many other problems which

are an area for investigation. After he was hospitalized for 21⁄2

months with numerous downs such as aspiration pneumonia, we

organized a day of prayer throughout our city, prayer for his recovVerDate 11-MAY-2000 08:06 May 22, 2001 Jkt 071843 PO 00000 Frm 00054 Fmt 6633 Sfmt 6602 E:\HEARINGS\62366 pfrm12 PsN: 62366
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ery with an outpouring of healing and love in every church and

synagogue. And what happened?

He was released from the hospital. He lived for another 3 months

with continuing complementary care. He lived to enjoy our grandchildren’s birthdays, to attend dinners honoring him, and to celebrate Thanksgiving with us. It was a miracle. The care did not cure

him. Nothing could have. The combination of treatments maintained a life of quality and dignity without pain. We became even

closer as a family rejoicing in his smiles, plateaus of strength, any

improvement. We felt that our love, positive attitude, special nurturing, notes of encouragement under his pillow, and urging him

to continue to live as normal a life as possible were key to even

minor improvements.

I want to conclude with mention of myself, although I hope I am

not in an end-of-life situation. I have followed the same regimen for

11 years concentrating on maintaining a strong immune system

after thyroid cancer and breast cancer twice. In one instance, my

oncologist found a new lump and advised me to see a surgeon. I

visualized that the lump disappeared. It did. When I was undergoing radiation therapy, I suffered radiation burns. I went swimming daily and did Jin Shin Jytsu. Much to the radiologist’s surprise, the burns disappeared, enabling me to continue the therapy.

There unfortunately comes a time when physical function declines, with death imminent. Even at this time, CAM is ameliorating for the patient and family. When we no longer have a cure,

CAM can bring healing and peace, giving the patient an opportunity to grow as a whole person in contemplation of death, giving

the family an appreciation for the process in which to come to

terms with their fears, their anger that medicine cannot cure, and

their realization that everything possible has been done. This results in a peace that is essential but unusual.

It resulted in Milton’s awareness almost to the moment of his

death. He controlled the removal of supports and died in peace

with my being in bed with him while our children embraced us.

What we did was so unusual that it was verbally applauded

throughout the hospital.

While establishing the office, now Center for Complementary and

Alternative Medicine at the NIH, was a forward step, the pace of

exploring new modalities is agonizingly slow. This was frustrating

to me and to others on the Alternative Medicine Program Council.

That is why Berkley Bedell established the new foundation of

which I am a trustee. That is why we need to consider accelerating

the pace of studies and changing protocols. People are ill and

dying. We must help them. The resources and results are there.

If we cannot get proof scientifically that CAM is effective, we can

assemble data from patients who have found good results from

these treatments. What we consider alternative is in many countries the basic standard of care which has cured ills or prevented

them over thousands of years. Scientific proof, as we know it, may

not be feasible although with cooperation through the World

Health Organization, we can try to achieve international standards

for herbs and other indigenous medicines. The lack of standards

encouraged organization of a meeting of world leaders in which I

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was privileged to participate in to begin the climb for uniformity

in various categories.

The NIH and other research agencies can assemble data and

must do so from patients and families that will corroborate what

I discovered personally. We must proceed at a faster clip and reconsider our criteria for measuring success. Our Representatives and

insurance companies must have the facts. They must understand

that CAM is an integral part of today’s medicine, that it improves

health and will save money for them in prevention as well. I would

be delighted to join with this committee in your good work. Complementary medicine does succeed.

[The prepared statement of Mrs. Marks follows:]

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Mr. BURTON. Thank you very much, Mrs. Marks. I think you

have given us a little different perspective on a lot of things. I appreciate it. Dr. Tian.

Dr. TIAN. Mr. Chairman, my name is Dr. Xiao Ming Tian and my

medical training in China was at Beijing Medical University including western medicine and Chinese medicine. My postdoctoral

training was at NIH and also Johns Hopkins. I have practiced acupuncture for more than 30 years in Beijing and in Maryland since

1986. I have served as a clinical consultant on acupuncture at NIH

Clinical Center since 1991. Currently, I am also conducting an NIH

sponsored clinical trial evaluating acupuncture in the treatment of

fibromyalgia in conjunction with Dr. Daniel Clauw at Georgetown

Medical School.

Traditional Chinese medicine has been used in China for more

than 2,500 years and includes acupuncture, herbal medicine, herbal remedies, and Qi gong.

Acupuncture is a treatment using fine needles that are placed in

certain body points, some of our 361 points. They are connected

with various organ systems in our bodies. Acupuncture needles

were FDA approved as medical instuments in March 1996. Acupuncture can balance and enhance the vital energy flow in our

body system to normalize our body function. In November 1997,

NIH panel reviewed research on acupuncture and positively supported its use as an effective, safe treatment for various disorders,

including chronic pain, asthma, stroke, addiction, and nausea/vomiting induced by chemotherapy and so on.

The second important component of traditional Chinese medicine

is herbal medicine and herbal remedies that are widely used

throughout China and other Asian countries for the treatment and

prevention for most disorders. There are more than 10,000 herbs.

There are more than 650 recipes and formulas that have been documented and used as official medicines in the hospitals and the

clinic. It is getting popular in the United States and people try

herbal remedies. NIH is supporting a study on herbal medicine and

the remedies.

No. 3 component is Qi gong, which is a form of a meditation with

special movement that is used to balance or enhance the patient’s

energy. External Qi can be manipulated by an experienced instructor in treatment. Qi gong also can be taught to patients and used

as a rehabilitative exercise. A patient can learn how to balance

their mind and body in order to improve their health. It is even

more beneficial when combined with acupuncture and herbal remedies.

At NIH, I have treated more than 300 patients suffering from

cancer, HIV/AIDS, arthritis, fibromyalgia, peripheral neuropathy,

chronic pain, and diabetes. Most of them did not respond completely to the conventional medicine and they were referred to me

by the other physicians as the last hope. The treatment, acupuncture treatment, treats symptoms such as pain, nausea, vomiting,

fatigue, depression associated with the disease, and also treats

some conditions. Most patients made progress. Their symptoms and

some conditions were considerably improved after treatment.

Acupuncture treatment is tailored for the individual patient.

Treatment may include acupuncture and Qi gong at the NIH ClinVerDate 11-MAY-2000 08:06 May 22, 2001 Jkt 071843 PO 00000 Frm 00062 Fmt 6633 Sfmt 6602 E:\HEARINGS\62366 pfrm12 PsN: 62366
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ical Center. In my private practice, I have treated more than 5,000

patients for similar conditions, using acupuncture, Qi gong, and

Chinese herbal remedies which are three major components of traditional Chinese medicine.

Most patients are happy with the satisfactory results. I have

found these therapies especially effective for reducing pain, reducing pain medications, and other medications. Other scientists have

found these treatments also act to enhance the immune system by

increasing interleukin 2 and the activity of natural killer cells. The

therapies of traditional Chinese medicine can increase the quality

of life by decreasing fatigue, depression and anxiety, and so on.

They can also improve sleeping disorders and enhance general well

being. In my experience, some positive changes can be noted immediately after the first treatment. I would like to share my experience with a patient at NIH named Chuck. He had metastic terminal cancer, and suffered from very severe abdominal pain with

a 36 hour episode of hiccups. He had not responded to the conventional treatments given at the NIH Clinical Center. And so Dr.

Mitchell Max called me. He is the clinical Director of the Pain Clinic at NIH. He called me and said, ‘‘Ming, come over here; you are

our last hope. This is a challenge because we tried everything. And

he failed all the conventional treatment and his condition was miserable . . ..’’ After examining him and making a diagnosis, I decided to use six

needles to treat him and after 20 minutes he felt better. He said,

‘‘Doctors, please leave me alone, let me go to sleep.’’ So after 12

treatments of acupuncture and with the care of the other physicians and nurses at NIH, his condition was greatly improved after

3 weeks.

So most often acupuncture can be integrated with conventional

western treatment. There is currently great interest by patients

and their doctors for using acupuncture as a joint treatment. In

fact, over the past 10 years, the use of acupuncture has increased

greatly in the United States because of its effectiveness, safety, and

low cost. Acupuncture has become a very important component of

complementary and alternative medicine.

Regarding insurance coverage, currently only a few insurance

companies cover acupuncture. Medicare and many private insurance companies do not pay for this treatment, so many patients

cannot take advantage of this treatment. I believe the health insurance industry should provide coverage for acupuncture treatment,

especially Medicare. I also believe acupuncture should be considered a medical specialty in our health care system. It plays a very

important role in treating so many disorders and improving care at

the end of life.

Thank you for inviting me to testify. I will be very happy to answer any questions you may have.

[The prepared statement of Dr. Tian follows:]

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Mr. BURTON. Thank you, Dr. Tian. I will start with Dr. Byock.

Doctor, how many patients should one nurse have responsibility for

in a hospice or a nursing home unit?

Dr. BYOCK. Well, it differs. In a hospice program, optimally 10

patients per nurse often works fairly well. Their patients are often

at home being cared for by family primarily with the nurse and the

interdisciplinary hospice team coordinating and obviously supporting that care. In an inpatient facility, an inpatient hospice facility, again I would still have to say there is a range because there

are different types of facilities. The one that we have in my town

of Missoula, MT is a residential hospice facility where people are

cared for as they would be in their own home. They simply need

a place to be.

In some more interventional oriented hospice facilities, they

should be considered basically intensive care units. Hospice care,

when it is done correctly, is intensive care and nurses should really

only have to be managing two, three, four patients at most. But

aides are an important part of this system in both hospice and in

nursing homes. In nursing homes right now, sometimes there is 1

RN on for 30, 60, more patients, and then at night sometimes no

RN is on. There may be a licensed practical nurse on. The ratio of

aides to people in nursing homes is really dramatically high or dramatically low—the aide/patient ratio needs to be improved.

At night, sometimes an aide has the responsibility of caring for

over 20 residents. Just think how long that requires if somebody

needs to be taken to the bathroom or is twisted up in their bedsheets and needs help or needs pain medication. These are bedrock

issues that we need to address. These days, many of us frankly are

reluctant to do extensive teaching in nursing homes simply because

the annualized turnover rate of the care providers there are so high

that it is simply not cost effective for our time.

We really need not break the bank of America to raise that ratio.

When I sit with aides in nursing homes, often they say that they

are simply not, you know, they cannot make ends meet themselves.

They are often on welfare and they are looking for other jobs. They

say we could make more money waitressing. And when I ask them

then why do you do this, the most consistent answer, almost without change, is they say we love these people. And yet we are not

giving them the time to do the care that they can do.

Mr. BURTON. I think that that is absolutely correct. I know in the

case of my mom and dad the people were doing it, I think, in large

part because they really developed an affection for them.

Mr. Brinkley, you have trained what—20,000—you said?

Mr. BRINKLEY. I have trained probably 4,000, but I have recruited more than 20,000.

Mr. BURTON. Now are these people paid at all?

Mr. BRINKLEY. No way.

Mr. BURTON. They are all volunteers?

Mr. BRINKLEY. Everyone is a volunteer. I accept donations but

everyone is a volunteer. Compassion in Action is completely volunteer based, and it just goes to show that out in this broad, wonderful country that we live in, the opportunity. Death is a really horrible thing for everyone to think to deal with, but there are people

who have lost loved ones and who sincerely love to be in service.

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They love it. I find it is one of the most rewarding things for me.

If I had never gone through what we call ‘‘near death experiences,’’

there are a lot of different explanations for this, but I found a spiritual context to my mental-physical life. I watch people who are

looking for the same thing and that they can find a spiritual moment. When you are helping someone in transition and helping

that family, you gain a certain sense and control of your life. You

get a new perspective on your own destiny.

I am very adamant about hoping that every Congressman that

runs and every Senator that runs spend some time in a VA and

learns what people are going through and how much just their

walking in the door and patting them on the hand, say how are you

doing and spend 10 minutes means to them.

There are a lot of people out there who want to help and by

bringing this awareness that you guys are really looking at this

gives them a comfort and a security and also the possibility that

if there was a day care center somewhere in a VA where older veterans could look after children and children look after veterans,

then there are single parents and single parent women, which consist of 73 percent of most of our hospice volunteers, who would

have no problem coming to a VA.

And, you know, service is service and I have been trying to figure

out how to map these two together because if we have a lot of single parent families that don’t have a male figure, then let the male

figure be that their mother is taking care of a veteran and maybe

those veterans can come downstairs with the kids and interact and

we have begun a full circle look that an old soldier can find the

value of his life and a young person can find service and value of

their family.

Mr. BURTON. If you have a program on paper that you think

might be something that we could look at, we could at least talk

to some of the health agencies here in Washington about it. Let me

just ask one more question and then I will yield to you, Mrs. Mink.

Mrs. Marks, you were talking about alternative therapies as an adjunct to your husband’s conventional medicine. You are very forceful in your statement and I just wish all my colleagues could hear

that. There is no scientific evidence that some of those things work,

but you just feel in your gut that it was really helpful to your husband?

Mrs. MARKS. The conventional medicine wasn’t working. So we

tried the other and it did work. So I feel more than in my gut, I

feel that it really does work, and I have noticed that it works with

me or has worked with me when I needed it.

Mr. BURTON. Yes. I am glad that Henry was here to hear your

statement because Henry has had some different feelings from time

to time on alternative CAM and alternative therapy so since your

husband was very close to Henry, I hope you will continue your dialog with Henry because it could be very helpful.

Mrs. MARKS. I would be very glad to continue my dialog with all

your committee and I would like to work with you because this is

very, very important to me and to many Americans. I appreciate

your interest and I appreciate that you are working with Beth Clay

because she knows a great deal.

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Mr. BURTON. Beth, does that mean you are going to ask for more

money? [Laughter.]

Mrs. Mink.

Mrs. MINK. Thank you, Mr. Chairman. I certainly benefited from

all of your testimony and agreed basically with all the sentiments

and ideas that have been expressed this afternoon. Mrs. Marks, the

concept that you expressed with reference to alternative ways in

which to deal with people who are in terminal situations and needing pain amelioration or palliatives or other kinds of support mechanisms is very much a part of the alternative health methods that

have been accepted and promoted in my State by the Native Hawaiian community. So I wanted to share that with you.

I have a general question to the panel and that is, NIH established, I believe, an Institute for Alternative Medicine not too many

years ago and I wondered whether it is embracing some of the

thoughts that you expressed today. Is there any sort of institutional acceptance of the end-of-life support mechanisms that need

to be embraced by the National Institutes of Health? I don’t consider health only the traditional methods of treating illness. Health

has got to be the whole person. And so when NIH adopted this Institute of Alternative Medicine, my hope was that it would enlarge

and impact on all the other disciplines that are included in the

NIH and that through the acceptance of this alternative medicine

notion that it would then embrace the methodologies that are used,

the approaches that are encouraged by all the other disciplines in

cancer and heart disease and so forth.

I wondered if that is a realistic hope for this NIH Institute or is

there something more that we ought to be doing so that institutions like Medicare would not hesitate to compensate or pay or reimburse for acupuncture treatments that are providing such relief

to thousands of people in the country? So somewhere along the line

we still have a mismatch in terms of accepting the importance of

this, not an exclusive jurisdiction but certainly the importance of

it in terms of end-of-life considerations or just pain in the case of

Dr. Tian. It is not end of life. It is just to make quality of life better

by following a particular discipline. So are there any comments you

would like to make on that objective?

Mr. BRINKLEY. I would like to make a comment and thank you

very much for bringing it up. I followed the Office of Alternative

Medicine from its very first day, from the town meetings all the

way through the Chantilly report and have never missed a meeting

or read anything that they produced. I find it woefully inadequate.

I find it to be isolated and kept apart and I think of the people,

and the thing that bothered me the most is from Chantilly until

this year, you know, you are talking almost 10 years. I watched

some of the people who are the leaders in this field in alternative

and complementary medicine who are leaders, who have come and

been a part of this program and the despair and the utter frustration that I have witnessed by talking to them, and some of them

have remained good friends of mine, and these are people who have

gone on to improve quality of care, who have gone on and used

these techniques in many places that so far not a single program

and not a single thing has ever been accepted by the NIH.

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The research paradigms and the studies that are done are kept

scientifically clinical. I think it is going to take more push from you

guys to go over and push that bunch around so they loosen up

enough to create quality in end-of-life care. When you have no

other choice like we are discussing, look at the results. There is

where, no matter if it is anecdotal or not, there is where you see

the true keys.

Mrs. MINK. Somehow I get the impression that at NIH what they

are pursuing is pure science and they do not look upon these other

methods that are working so well as science. Somehow we have to

find a way to break that mental block that so many of our medical

researchers adhere to. Yes?

Dr. BYOCK. I couldn’t agree with you more, and my own actual

research work for strategic reasons has been in the area of the

measurement of subjective quality of life. You said it yourself. We

are talking about end-of-life care. People are not going to be physically healed. We already know that their time is short. But we can

improve the quality of their lived experience for themselves and

their family.

The infrastructure, the basic tools for measuring subjective

human experience are not well developed. They exist and they can

be developed. We have done this in so many other areas of human

endeavor. This is a key sort of a wedge issue because NIH has said

that quality of life assessment is an important outcome measure.

It needs to be, but so far the methodology has continued to go back

to objective measures: how big is the tumor; how long does somebody live; what is their functional status?

In fact, given the fact that we are all going to die and given the

fact that the vast majority of us will die of a progressive illness,

we know that functional status and physical deterioration is inevitable and we really need to develop the thermometers, the basic

measurement tools to measure subjective quality of life. If we were

able to do that and really hold NIH and the research community

to that as an important outcome measure, things like complementary therapies would automatically be able to be measured and

raised in their priorities. So we have some basic work to be done.

There is wonderful stuff happening but it is to this point insufficient.

Mrs. MARKS. I think your question to me is in several parts. One,

we would like to see Medicare get involved, but I think if we get

Medicare involved, we have to somehow discover what is happening

with Medicare and where the waste is. We could use them in the

complementary medicine very surely. Second, complementary medicine, although we are speaking about end-of-life, is very important

in maintaining wellness and can cut down much of the cost and

suffering in this country of people maintaining their health.

Dr. McLanahan, who is here today, was the one who advised me

on what I should give my husband. You can’t just go out there and

take herbs willy-nilly. You have to know what you are doing. So

that is another part. But I do think the NIH and the Center for

Complementary and Alternative Medicine need to be made more

aware that the American public really wants to zero in on this and

let us have some speed in this and let us not be bogged down in

the old methods of researching it.

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Mr. MCINTOSH [presiding]. Thank you, Mrs. Marks. Dennis, I

also have a couple of questions. Are you going to come back after

the vote?

Mr. KUCINICH. I hope to.

Mr. MCINTOSH. I was going to suggest that perhaps you and I

could split about 7 or 8 minutes before the vote and then if you get

a chance to, you can come back. I will not be able to.

Mr. KUCINICH. All right. How about if we both do 5?

Mr. MCINTOSH. Sounds good. Then the panel could be dismissed

and we will go to the second panel after the vote. Let me ask you

to be very specific and brief in your answers, but I really want to

get through several questions for the record. Dr. Byock, what specific complementary therapies do you think Medicare should cover

at this time that they do not?

Dr. BYOCK. I have no specific recommendations regarding that.

Mr. MCINTOSH. Mr. Brinkley?

Mr. BRINKLEY. I will take music therapy. Music therapy began

in 1941 and 1942 in VAs before we knew what post-traumatic

stress syndrome was. It was used between 1941 and 1947 as the

exclusive method. It is noninvasive and it begins to show results.

You can do serotonin levels. You can do endorphin levels, but you

can watch a change in the quality of that person’s comfort zone.

Mr. MCINTOSH. Have there been any studies that measured

those?

Mr. BRINKLEY. Hundreds of them, but still no one will bring it

in as an active test because it opens the door on just what we were

talking about. It opens the door to acceptability.

Mr. MCINTOSH. Let me ask unanimous consent that we keep the

record open for 10 days for additional material. And Mr. Brinkley,

if you could submit maybe a summary of those tests that we could

include in the record for the hearing?

Mr. BRINKLEY. Absolutely. It would be a pleasure, sir.

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Mr. MCINTOSH. Mrs. Marks, we recently lost my wife’s mother to

breast cancer and hospice was a wonderful experience for us. There

was a book that we read called ‘‘Final Gifts’’ that helped explain

exactly what the patient was going through. It talked about experiences similar to near-death experiences and that didn’t happen

with Sherry, my mother-in-law, but it was very helpful in terms of

knowing how best to release somebody you love. I have a great deal

of admiration for hospice and I appreciate all that you all have

said. But what observations and recommendations can you offer regarding complementary and alternative medicine as you get to the

end-of-life care? How did you pick which herb therapies to use and

some of the different things? How did you go about finding that information?

Mrs. MARKS. I talked with various people. I talked with Dannion

and I talked with Sandra and I talked with the acupuncturist and

various people who are knowledgeable and have seen the results

and then we tried one thing and then another and they seemed to

work. You have to rely on the experiences of other people in this

situation because the studies are not there. We do need more studies and I would like to respond also to the question of coverage.

I think there should be a national coverage of acupuncture.

There is no doubt in my mind. That has been proven to be successful. I think that is one place to start.

Mr. MCINTOSH. Good.

Mr. BRINKLEY. I think that Chantilly report published in 1994 on

the beginnings of the Office of Alternative Medicine, which everyone received, is the book. I mean it is one of the greatest books of

this century and each Member received it. To read it will help you

so much in finding what to target and who is the expert in that.

Mr. MCINTOSH. Appreciate that. Thank you. Dr. Tian, do you

have specific recommendations on coverage?

Dr. TIAN. Acupuncture should be covered. I just want to mention

that in 1994 FDA and NIH sponsored a workshop on acupuncture.

There was a panel—I was one of the panelists who reviewed all the

research papers worldwide. They showed that in the past 25 years,

acupuncture, only six cases of malpractice in 25 years—which

means very low risk. It is quite safe and effective. In 1997, NIH

proved the positive and mentioned the conditions including cancer

patients and as I mentioned in my talk.

Mr. MCINTOSH. So you were able to measure outcomes and demonstrate that it was beneficial?

Dr. TIAN. Yes, yes. They reviewed all the research papers and

strongly recommended and supported acupuncture. So I have a

problem understanding why Medicare does not cover acupuncture

treatments because this is now—acupuncture is in mainstream

health care. It is not something we don’t understand.

Mr. MCINTOSH. Yes.

Mrs. MARKS. Because it is not western medicine.

Mr. MCINTOSH. There seems to be a real bias there. We ought

to use scientific criteria and say when it works we will support the

payment for it.

Mrs. MARKS. I would like to add something if I might. I would

like to see some consideration being given to tax deductions in term

of supplements, not just the ordinary vitamin you buy over the

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counter, but in terms of supplements I think there could be a real

study of that and it would help people to be able to include the cost

of such supplements in their medical expenses.

Mr. MCINTOSH. Thank you. Let me finish my questioning and

recognize Mr. Kucinich for 5 minutes.

Mr. KUCINICH. Thank you very much, Mr. McIntosh. First of all,

I want to thank the panelists for coming before the Congress and

this committee to present their views, which I appreciate and

honor as well as your commitments. Mr. McIntosh raised an important question about what Medicare would cover. I would certainly

be ready to advocate that Medicare covers the full range of complementary treatments, and as someone who understands the basic

assumptions of allopathic medicine, it would appear that it is focused purely on the body and not even on the senses, by the way,

but on the body itself, is almost a preoccupation.

It focuses a very narrow subject-object orientation, which really

minimizes one’s humanity. When you get outside of that sphere of

practice or the philosophy which subsumes it, you get to a condition of understanding that there are other choices out there, some

of which have been used for thousands of years in other cultures,

other ways of looking at the world. What really we are challenged

to do in this Congress is to assist allopathic practitioners in broadening their perspective and not to threaten to supplant that practice. The word is complementary. The word is adjunctive therapy.

To find ways of giving people more choices about the way they live

and the way they die and the testimony that I have had a chance

to review of the witnesses, which speaks to options that deal with

therapeutic touch and prayer.

Prayer, you are dealing with the spiritual condition of people. I

mean if we are more than our bodies and we are mind, body, and

spirit, and if we have integration, and you take a truly integrative

approach, it is quite possible that people are not simply ushered

from a physical to a nonphysical condition, but they are given an

opportunity to give their lives more meaning. And when you do

that, you not just prolong or bring about the possibility of a prolongation of life, but you do it with a sense and attribute to the quality of life, which I think helps to celebrate humanity. If there is one

thing that our current medical practice despite its technological efficiency doesn’t quite reach, it is a celebration of the humanity of

the individual.

When I look at the work that is represented here by these practitioners and by these philosophers, and you look at life review,

music therapy, guided imagery, visualization, human touch, prayer,

these are a lot of things that people find that excite their interest

in life itself.

Mr. BRINKLEY. Well, I mean I would like to say this about the

VA. And I see this and I hear it from Ira. What I love about the

VA right now is they give us the opportunity. They are the one true

Government institution that allows us the freedom of movement to

use these things. You know you think about guided imagery and

music therapy. How many of us—and the other day someone says

how do you think a bunch of soldiers can use guided imagery? Well,

I made one to Mr. McIntosh, but you think of this. In the guided

review, in the end-of-life review which we are all taught; we ask

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them what their favorite song was. It will be a dance at a USO.

It will be when they met their wife and when they start telling you

that story and we go out and find the music and bring it back and

let them listen to that era in their life, that is music therapy at

its best.

The VA allows us, because I train my practitioners in therapeutic

touch, aromatherapy, music therapy, and color therapy,

noninvasive alternative and complementary techniques, and I love

them because they will let me try anything that will help that patient. The other day someone said prayer? You are going to go into

a VA and talk about prayer? And I said, pal, whether you know

it or not, there ain’t no atheist in a foxhole. Everybody knows about

prayer right then and there and we are watching it work and trying to set up programs where that is happening.

Mr. KUCINICH. Thank you very much and I would like to tell Mr.

McIntosh that I think this is an important function of the Congress

because as we go to a new millennium, we have a chance not just

to keep repeating those things that didn’t work, but bring back

those things that do work and try to introduce them into a more

broadly accepted public policy. If there is one thing, one area that

might help guide us to a new age of enlightenment in this world,

I think it would be the area of complementary medicine. So thanks

to all of you for your commitment. Thank you, Mr. Chairman.

Thank you.

Mr. MCINTOSH. Thank you, Mr. Kucinich. I will now have the

committee stand in recess at the call of the chair after this vote

and I will leave it to the discretion of Chairman Burton whether

he wants to continue with this panel, if that is all right. He may

have some more questions that you didn’t get to answer before he

had to leave. The committee will stand in recess. Thank you.

Mr. BRINKLEY. Thank you, sir, and my heart goes out to you

about your wife and the loss of her mom. Tell her I owe her a hug.

Mr. MCINTOSH. Thank you.

[Recess.]

Mr. HORN [presiding]. The committee will be reconvened. If panel

one is still in the room, there are a few questions we would like

to ask of panel one. So if you could take those seats again we will

put some of these questions for the record. Sorry about the voting

interruption. That is our life here. So those are the things we have

to do, but we enjoy these.

OK. Let us start. Dr. Byock, you are here and would you give us

an opinion as to how do the British and the Canadian health systems differ in offering hospice programs?

Dr. BYOCK. Very importantly, a person is not made to choose between continuing life prolonging therapy either with chemotherapy,

if they have cancer, or hospital-based therapy for congestive heart

failure, or those sorts of interventions in order to receive hospice

care. I have spent some time in both countries actually studying

the hospice delivery system and although neither of them are perfect by any means, by the way, people aren’t provided with what

I have come to term ‘‘the terrible choice,’’ where you can either continue to get cancer therapy, for instance, or you can, you know,

give up and get hospice care which is what they hear.

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So in the decision whether to receive hospice care, families are

often—they feel that they are being made to give up the opportunity to go back to the hospital, to give up the opportunity to have

more chemotherapy, maybe an opportunity to use an intensive care

unit if they need to. In fact, also, in many hospice programs these

days because the hospice community is struggling with survival of

their programs, programs can’t provide, they cannot pay for certain

very expensive pharmaceutical agents, for instance.

There is a pain medication called Duragesic which can cost as

much as $36 a dose. There is an anti-nausea medication. One is

called Zofran that can cost $100 a day. In order to receive those

medications for comfort, people actually very often have to stay in

the hospital. That is kind of an irony. Their care would be less expensive at home, but they have to be in the hospital. In Britain and

in Canada, people simply can have both. They can have full service

hospice care and continue to see their chemotherapist or go to the

hospital when they need to.

In fact, when that happens, when people aren’t forced to make

that choice, their behavior changes. They have a confidence that

they can be at home, that they will be cared for, that they will be

comfortable, and as that confidence builds, because it is nice at

home, you know, you want to live out your days at home, their behavior over time is that they don’t tend to call the ambulance because there is a plan in place for when problems occur right there

at home. They don’t go back for their fourth or fifth round of chemotherapy often because, you know, they are focused on quality of

life rather than the quantity of life.

So that what happens over the last year of life is in both systems

even though the choice isn’t imposed, in fact, the result is that people tend toward home care rather than using the hospital and the

ICUs. It doesn’t take many avoided hospitalizations or ambulance

trips or ICU admissions to pay for a lot of high touch care in the

home.

Mr. HORN. When you compare British and Canadian systems,

are the therapies offered in each plan similar or are there differences between the plans?

Dr. BYOCK. There are differences, but they are fairly similar. And

I want to say, you know, there are—certainly having spent time in

both countries, there are certainly major advantages to the American health system when it comes to acute life saving illness and

injury. I practiced emergency medicine for a number of years, and

I would much rather practice that here than in the accident and

injury departments in Britain.

At the end of life, however, when you are living with advanced

chronic illness, frankly I would much rather be cared for in either

of those two systems. Not only is the access to palliative and hospice care better, but rarely do people face the end of life worried

that they are financially devastating their loved ones and that they

have truly become a burden to the people they are leaving behind.

Mr. HORN. You are absolutely right. That is a major worry for

every elderly person I have met.

Dr. BYOCK. It is.

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Mr. HORN. Are there various therapies including complementary

therapies that Medicare does not cover at this time that you feel

could improve the end-of-life care?

Dr. BYOCK. Well, if we have access to adequate pain management

and services like palliative and hospice care, the answer is yes.

Simple things that provide comfort and pleasure for people such as

massage therapies or aroma therapy, music therapy was mentioned, having the time to do life review with people, to just bring

them back through their stories. In the hospice program I have

been most recently associated with, we frequently use massage

therapy as a way to not only alleviate muscle tension and physical

pain, but actually as a gift of pleasure for somebody whose time is

short. All of those things can be incorporated, frankly often within

the comprehensive package of hospice care without dramatically increasing expenditures in any direction.

As I said, because we already spend an enormous amount of

money during the last year of people’s lives because they are so

sick, simply by coordinating efforts with a consistent, cohesive vision of what good care should look like, we really can simply by redirecting resources achieve much, much better outcomes. And I

think we really should have much higher expectations. I don’t

think that is going to require more money.

Mr. HORN. Well, I thank you for those answers and, Mr.

Brinkley, you came in just in time. I once was president of a university where we had a very fine music therapy program, and my

question to you is, what is the basis for why you think music therapy can be effective?

Mr. BRINKLEY. Well, when music therapy became a scientific modality was during World War II before we knew what post-traumatic stress syndrome was. We called it shell shock. Music therapy

began to be a tool from 1941 to 1947 in VAs and then in its outgrowth it became to be a very comforting zone. Look at all of us

where music therapy really works. How many have listened to gospel or spiritual? How many have a favorite song? And the other

day when I mentioned just earlier someone said how do you bring

music therapy into a VA? By simply sitting with a soldier and as

he reviews his life, what is the favorite song? And it will be a song

from a USO. It will be the song that he met his wife by.

And when you look at how advanced music therapy has been

brought into play with handicap, with autism, and it is

noninvasive. It only takes a tape recorder, music, and conversation.

It is not labor intensive. It is not medical or therapeutic or drugintensive and it is a quiet way to start. I have learned a lot about

people listening to music as opposed to the static of the hallways

and the rooms. And it worked with Carolene when we were going

through this with her husband, the difference that music therapy

made in a simple room.

I used to call her and threaten her about turning off the television. As soon as I would hear it, I would threaten her, turn the

television off and play this kind of music. And Steven Halpern and

I want to take things, after going through 10 years of alternative

and complementary focus, and it never really goes anyway except

in the school of nursing and in some small groups in the NIH, but

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never out of the Office of Alternative Medicine, and take these

things and show how they can impact.

And when you have guided imagery, which is music and a

thought process to take a person through the relaxation and the

comfort that all of us have seen work, and then we begin to really

look at these things not from an intense medical perspective but

from a mental, emotional, and spiritual perspective, and we have

begun to help them go home safely.

Mr. HORN. On the point of music therapy, how do you use that

to help the next generation not be afraid of death and dying and

even more important to be like those from the Second World War

where they made a great difference in their own lives for valor and

many in service on the front line?

Mr. BRINKLEY. In what we call Education 2000, there was an initiative called ‘‘service learning.’’ This service learning program, it

was taking kids to keep from being dropped out. I work in South

Carolina with an EH class, which is emotionally handicapped. I

have looked at Minnesota, Ohio, and California, who are doing fabulous programs of taking kids, single parents or abused children,

and by taking them and giving them service learning, giving them

responsibility into the community, to go to a nursing home, to go

to a VA, to go to these places with a sense of pride that they are

service in the community and in their own homes.

You know when you are in a place that has children that, has

seven children with three mothers, seven children, and no male figure, you know things are going to be a little rough. To take these

kids and let them help an old soldier and old soldier tell them a

story and say thank you, this is a way that the old and the young

still have service. A young child finding an identity in a community

and an old soldier doing one more job. And that blend I have

watched be so tremendously effective on both of them that the

guys, the little fellows, they come and sit with attention. They have

less problems. The teacher has less problems because an old soldier

talked to them and they helped someone.

We have to look at the emotional spiritual sides of us as individuals and by bringing those together we are going to improve the

quality of the next generation with service, compassion, and caring.

And we are going to give an old soldier a chance to make those last

stands and helping people understand what he fought for, what

this country is about, and to improve the quality of a community

working together.

Mr. HORN. I think you are right on the mark. I had a psychology

program for undergraduate and graduate students where they

would go out and help mentor and spend time talking to senior citizens in various homes. And that was good for them and good for

the senior citizens.

Mr. BRINKLEY. Yes, sir. Mentoring is a tremendous program that

doesn’t cost anything. Nothing I am talking about costs anything

except maybe a $9 cassette player and the ability for a community

service related person to want to get involved. The Council on

Aging is doing this and service learning is really a wonderful program when applied just like you are saying mentoring. There are

a lot of vast resources in our elderly people that can really help

once that interaction of helping and serving each other gets into

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play. It helps me tremendously. I love people who are in their elder

years. Why? Their sense of humor. They will tell you like it is.

Mr. HORN. Yes.

Mr. BRINKLEY. And they are the joy that helps us all learn to

grow closer together.

Mr. HORN. Mrs. Marks, when you served on that advisory panel

at NIH, did you feel the advice of the panel was being listened to?

Mrs. MARKS. No.

Mr. HORN. Would you like to elaborate on that?

Mrs. MARKS. I felt that there was something that was stopping

the message from flowing where it should go. There were studies

that went out in the field, but not much has come back. I hope that

with its becoming the new Center for Complementary and Alternative Medicine that that philosophy will change. But it is very important for the Congress to put pressure, if you will pardon me— I know there is someone from the NIH here—to put pressure on

the NIH to move forward because this is so key to wellness and

health and illness.

I would like to expand upon what one of the gentlemen said. I

think another area where Medicare could provide more coverage is

in psychotherapy. There is some coverage but it is a little difficult

to achieve the coverage, and I think that is very important in terms

of wellness. I think it is also important to enable people to die at

home. My mother died when my daughter was 14. She held her

hand while she was dying and Carol said, ‘‘I am not afraid of dying,

now.’’ Mr. HORN. Well, on the point of the observations you have made,

what recommendations could you offer us regarding complementary

and alternative medicine research in the end-of-life care? Do you

have some particular recommendations you would like to share

with us?

Mrs. MARKS. I believe the record is being kept open for 10 days.

Mr. HORN. Right.

Mrs. MARKS. May I send that to you?

Mr. HORN. Certainly.

Mrs. MARKS. I think it is important right now to say that I think

some of the actions that have taken place in communities and in

organizations and such as the doctors here have observed, I think

it is very important to start with that and move forward because

there is a great deal of belief that this works. And I know it works.

I have a friend who had non-Hodgkin’s lymphoma. She had a bone

marrow transplant at Stanford. Her husband did Jin Shin Jytsu on

her everyday and she left the hospital in 3 weeks, earlier than any

other patient so treated had ever left. Now that is anecdotal, but

we can build on the anecdotal. We don’t have to have the scientific

reports. It happened.

Mr. HORN. Question for you, Mr. Tian. And this will be the last

question unless Chairman Burton has one. Please, I will yield to

you.

Mr. BURTON. Well, since you are talking to Dr. Tian, I want to

learn more about acupuncture because I may be calling you myself.

I have some problems once in awhile. But Mrs. Marks said—and

thank you for yielding, Chairman Horn—I am concerned about you

are on the advisory panel and you said that you felt like NIH

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wasn’t listening to you. You are not the only person that has said

that.

When you were talking to them or when your compatriots were

talking to them from the advisory panel, why do you guys feel like,

why did you feel like they weren’t responding or weren’t paying

any attention?

Mrs. MARKS. I think the results. I haven’t seen the results that

I would like to see achieved and it was a very slow pace. Now, it

is a different operation, I hope, so I think we should look at that

very carefully. I am no longer on the council. My term ended. I am

on Berkley Bedell’s Foundation on Alternative Medicine. I would

recommend that we all talk with him, too, because he does have

some procedures in place. But it just appeared to me and to some

of the other people who are on the council that the pace was very

slow and I would go to every meeting and say people are dying and

people are ill and we have to move faster. The pace is slow. Let

us try to improve the pace, speed it up.

Mr. BURTON. Well, I shall look forward to your response to what

Chairman Horn was asking for awhile ago because we will have

people from NIH up here on a regular basis and I think they are

aware of that and we will do everything we can to get them to open

up to some of these new ideas.

Mrs. MARKS. I don’t mean to be disparaging of the NIH. I think

it is going to be a different matter now. I am hoping.

Mr. BRINKLEY. I am not really sure that it will be, but I attended

every meeting for 10 years. I looked at everything. I think it would

behoove this group of gentlemen to take a good look at those who

already sat on the boards for 10 years who are now scattered back

into the mainstream who left or rotated off. You have probably 30

or 40 people. Go ask them. They can be located. Ask them to send

you a report and let them tell you what they saw. You see such

disheartening among these people who had such faith and hope in

this and then you look at how the mechanism and the money was

spent. You know I don’t owe the NIH anything. All I care about

is people in the end-of-life care and there are maybe 60 people that

you can call upon to give you good scientific, medical perspectives

of what they saw.

And that is $96 million, Chairman Burton and Chairman Horn.

That is $96 million. What I could do with $96 million or any of the

rest of us in palliative and end-of-life care, we can’t even comprehend that much money.

Mrs. MARKS. I can send you a list of some of the people when

I send the material to you.

Mr. BURTON. We will look at that. Thank you, Mr. Horn.

Mr. HORN. Well, Dr. Byock, I think wanted to answer your question, too.

Dr. BYOCK. One minor point here. It is actually a major point

that I want to kind of put in context. A recent study, a very important study from NIH researchers on care giving of people, terminally ill people, in their homes. One of the findings was that less

than 3 percent of the care that they received was from volunteers.

Now, you have seen today or heard testimony about how willing

and ready people are across the country to step up and care. An

unintended side-effect of our licensure and accreditation policies of

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the health care system is that we have inadvertently built barriers

for the community to come forward.

Now we have to reach back out and build programs or avenues

where people can be trained and supervised, including being supported, in providing care as volunteers to other members of their

community and we need to set an example as a national government for communities across the country. In my own community,

I know that if you build those avenues, people come. They are

ready and willing to provide care. They do it for free. It improves

the quality of their life as volunteers and members of the community. This is a national resource that we can tap that will not expand the Federal budget and that is really unfortunately being

largely untapped today.

So here is NIH research that I think casts a very bright light on

a place that we need to expand the care resources in our country.

Thank you.

Mr. BURTON. Thank you, Mr. Chairman.

Mr. HORN. Did you want to bring up the veterans question here?

Mr. BURTON. Well, I do not want to prolong the panel because

they have been here for a long time. Mr. Waxman brought up the

issue of the bill that we have got that is going to be pending before

the House I think in the next few days regarding DEA and how

they are going to have control over people getting medications that

might ease their pain and suffering. Do you think that is going to

be a big problem? And if so, what do you think we ought to do

about that?

Dr. BYOCK. You know this is a very contentious bill. It has unfortunately increased the polarization in this country around these

issues which I think is really unfortunate because I think that people on both sides of the issue of assisted suicide firmly believe that

we need to improve end-of-life care. Having been introduced, I actually support the Pain Relief Promotion Act because from my perspective, lethal medications are already illegal and the DEA already has this authority. They already have this authority and so

I don’t see an expansion there except in the State of Oregon which

we know is an exception. I don’t see how it changes anything other

than improves education of the DEA and local law enforcement in

what is effective pain management.

From my perspective, if we are going to have a problem with

physicians confusing effective pain management with euthanasia

we have an even more serious problem in this country. As a physician who has practiced emergency medicine and hospice and palliative medicine, I can tell you that it isn’t a subtle distinction between caring and killing. The medications we use are different.

And I do think intention matters. So from my perspective, I think

that intentionally killing a patient has no place in the health care

system or the practice of medicine.

I have no problem with the Pain Relief Promotion Act. I understand, however, that it has become a symbol and that it is increasingly polarizing people who really need to talk to one another. I

mentioned before I have for many years spoken ardently against

the legalization of physician-assisted suicide. Frankly, during that

time, I have come to be personal friends with a number of the people that I still argue with and debate from podiums. I know that

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they are good people, that we seriously disagree on this matter, but

that together we have a strong commitment to alleviate suffering

and improve the quality of life for dying Americans. I think that

this bill should not keep us from building that collaborative spirit

and working together to alleviate suffering. I think that is an

achievable goal.

Mr. BURTON. Congressman Waxman and I and others will try to

work to clarify that when it goes to conference.

Dr. BYOCK. Thank you. Thank you very much.

Mr. BURTON. I think we should pass it through the House and

then get to the Senate and get it in conference.

Dr. BYOCK. I would be happy to serve as a resource to you.

Mr. BURTON. Fine. Thank you, Mr. Chairman.

Mr. HORN. Thank you. We appreciate you asking those questions.

I think all of us, the one worry we have if we are going to be hospitalized when you are in your 60’s, 70’s, 80’s, whatever, we don’t

want to be a burden on our family.

Dr. BYOCK. Right.

Mr. HORN. And we didn’t work for 50 years or 60 years, 7 days

a week, to be then have that money flowing down to the hospitals.

Dr. BYOCK. That is right.

Mr. HORN. And as far as I am concerned, pull the plug on me

because I don’t want to damage my family and I don’t want any

small estate I might have to be going down the drain because of

some idiotic new probe that they stick in me. So you are all under

oath and I am under oath. So I feel very strongly on that problem

and I think we have got too many loose screws in this society that

haven’t faced up to some of these issues.

Mr. BRINKLEY. I agree. And critical care doctors are a great resource for this, Chairman Horn. Critical care doctors are the ones

left, whether you administer 40 milligrams of morphine in a slow

controlled pain reduction or whether you give them 20 and then

they go immediately. I mean a good physician knows what he is

doing. Where I come into that issue is law enforcement has a place

to control certain controlled substances, but law enforcement aren’t

at the bedsides, they are sitting in their towers and doing what

they are doing and chasing whatever they are supposed to be

doing, but they are not at the bedside like a doctor is. They are not

watching the pain this person is in.

And that physician is frightened because he is at the maximum.

I have a 48-year old veteran. He is paralyzed. He broke his neck.

He got hit by a train. He cannot move. He is in paralysis. He has

degenerative muscles and atrophy of his muscles. His spine, which

is where most of your nerves are, is pushing against it. The doctors

can give him no more medication because the DEA says he can’t

do it, and although I see this person literally every couple of days

and he has been a friend of mine for 35 years, I get a little resentful because this doctor can give him something to relieve the pain.

They have a pump, but then the pump has to be regulated by the

DEA.

Then they go through a whole new deal where they drive him up

and down the road between medical hospitals in a van. There is a

point where, hey, guys, wait a minute. These are human beings

and stay out of it, let the doctor do the job because he has kept

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him alive for 7 years, you think he is going to kill him now? And

I am like Ira. I am against assisted suicide. I am totally against

euthanasia. I believe you choose to come and are chosen to come

here, you have come to do your time, and whatever you messed up

or what went wrong genetically, you still have your time here to

do, and it is important that we keep that.

What I am worried about in the Veterans Administration, and I

have people here, that there comes a time when it reaches, when

you are losing 40,000 a month, and you guys will keep putting

pressure that euthanasia, whether, no matter how it comes, will

become almost necessary and that is why I want to make this

something to be aware of today, that 3 years from now there will

be choices being made by physicians and by staff members who are

writing appropriations for VA and by collective little consortium

group that we then will be euthanizing these guys and some

against their own will and some happy about it, and that is what

this bill is polarizing, and I don’t mean to ramble on, but these are

some really important issues that I am so proud the committee

brought to focus today. Three years from now, it will be dead on

your election trail, but now you have made the motion to move forward in it and this bill coming up, it has to find where Chairman

Burton said, that middle ground—and you, Chairman Horn—that

middle ground. It must be found.

Mr. HORN. Well, we thank you for those thoughts and Dr. Tian,

I will ask you the last question for the panel. Why is it, do you

think, that the NIH Clinical Center has been so progressive with

providing acupuncture for their patients, even before there was an

Office of Alternative Medicine?

Dr. TIAN. In 1986, it was the first time that I was invited to give

a talk at NIH Clinical Center regarding Chinese medicine. Since

then I have treated a lot of NIH physicians including their patients

and families for 4 years. They referred all the tough cases to me

as a last hope. So until 1990, they believed that we don’t know too

much about acupuncture and Chinese medicine. We know this guy

was trained at the NIH. He knows science and he is good guy. Let

us try acupuncture for Clinical Center patients. So the board of

Clinical Center approved acupuncture first in May 1991 before the

office—OAM—which was set up 1 year later.

I provided acupuncture almost everyday for in- and outpatients,

including emergency patients. I believe also they reviewed a lot of

the data, research papers, and there were a lot, more than a few

hundred clinical trials on acupuncture. I want to share the experience with applying for research grants because I tried three times.

The first two times I didn’t get it because I was using the language, the Chinese language and Chinese medicine. And then I

learned, I realized I must change this. So I am not going to say

anything about how the skill, what kind of skill you enhance or reduce energy. I am talking about the ‘‘dosage’’ of each treatment. So

the four groups of patients will be treated in different ‘‘dosages,’’

stimulation, time, how am I manipulating the needles, and finally

we passed the group. You know the group who reviewed the scientific grant is not from Alternative Medicine. It is from different

institutions, for instance, arthritis or fibromyalgia, that is from ArVerDate 11-MAY-2000 08:06 May 22, 2001 Jkt 071843 PO 00000 Frm 00142 Fmt 6633 Sfmt 6602 E:\HEARINGS\62366 pfrm12 PsN: 62366
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thritis Institute, not from Alternative Medicine until recently they

changed the system.

Now I believe the National Center for Alternative Medicine and

Complementary Medicine can give a grant directly. So they would

set up their own panel. It will be much easier. So I was joking with

my colleagues at NIH. I said now I understand the system. OK. We

want to study an apple. I said this is an apple, it is delicious, it

is from China, let us study it. They say, ‘‘no, no, no. We are not

interested in apple because the apple is not in regular shape; you

have to cut.’’ I say all right. How many cuts do you want? They

said try to make six cuts. One, two, three, four, five, six. Now the

apple is a square. Can we study it now? Yes. We can study. That

is my experience of some skills needed to get a research grant. I

want to share this. Maybe you want to follow this to get your research approved.

Mr. HORN. In 1981 I was in China at the Second Medical College

in Shanghai and watching a brain operation with acupuncture and

a mix with western ether of the 30’s, shall we say, and it was fascinating to see that. There were about a dozen of us asked to go

over and look at the various institutions the Chinese Government

thought they might make some changes in. So I was fascinated by

that and I am curious on your early venture into this.

Dr. TIAN. Thank you.

Mr. HORN. Thank you. Does the gentleman from Indiana, our esteemed chairman, have any further questions of this panel?

Ms. SCHAKOWSKY. Mr. Chairman.

Mr. HORN. Yes. Fine.

Ms. SCHAKOWSKY. Thank you, Mr. Chairman. I am sorry that I

have been so in and out because this is an issue very dear to my

heart. My father, who passed away in 1997, really taught all of us

how to die. It was an incredibly uplifting experience. He lived in

my home for 6 years and then at the end of his life we were really

blessed with hospice care. And it was, well, I am really beyond

words almost. It was just an incredible experience, one that I think

was comforting and rewarding for all of us.

But I was concerned and you raised this, Dr. Byock, in your testimony that we had to somehow certify that he would be dead in 6

months, although the doctor said, you know, there is no sanction

if he doesn’t comply and die in the right amount of time, but that

is certainly a barrier. And then the issue of relinquishing access to

other kinds of services was definitely something that we as a family had to talk over and I think—is that what you had in mind

when you were talking about the statutory limitations, et cetera,

that we had to——

Dr. BYOCK. Yes, it is. And now there are repercussions if somebody is admitted to a hospice program and doesn’t die quickly

enough. Right now we have I think a national crisis just in the

Medicare hospice benefit program. The median length of stay in

hospice programs is right around 17 days. Congressional intent

was that people have access to about 6 months of hospice care.

Hospice providers want to do end-of-life care. That is what we are

trained to do, but currently we are doing brink-of-death care. There

is not a lot of time to do the life completion and life closure work

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ted right sometimes within hours of their death. This is unnecessary and frankly it is so ironic because it ends up costing the system more money, not less.

Ms. SCHAKOWSKY. I also just wanted to make the point, if you

will allow me, Mr. Chairman, regarding how this interfaces with

the whole issue of the so-called right to die and I got a fax today

regarding an Oregon patient with dementia who was, in fact, the

physician even though the physician knew that this person couldn’t

remember anything or really understand anything, including the

names, could not remember recent events and people, including the

names of her hospice nurse or her doctor. Was this already discussed in this hearing?

Dr. BYOCK. No.

Ms. SCHAKOWSKY. They made the decision, the go-ahead was

given by Kaiser Permanente to end this person’s life. I think what

we are talking about here is a whole new ethic, a whole new approach, a whole different understanding about what end-of-life

means, and that is so important, I think, to our whole society and

what we are about as people. We must understand the value, the

importance, the dignity, and the beauty of these last days, rather

than seeking ways to cut it off earlier and particularly when we are

robbing people who can’t even make these decisions of their right

to live.

Dr. BYOCK. It is very troubling. This case was in ‘‘The Oregonian’’ over the weekend and it talks about a patient with advanced

cancer who also has dementia and can’t remember the events of

her diagnosis or treatment nor who her doctors are. The family felt

that she wanted to be helped to a preemptive death. Her doctor disagreed. They got a mental health consultant who thought that she

did not have decisionmaking capacity. So they got a new doctor

who then got a new mental health consultant. This is all within the

Kaiser Permanente system.

The second medical consultant felt, well, maybe she could and

the ultimate decision went to a physician who is a Kaiser administrator and also a Kaiser shareholder who ultimately decided that

it would be OK for this woman to receive her lethal prescriptions.

Those of us who worry about the slippery slope in assisted suicide

have been proven right in this case. The slope is not only slippery,

it is a virtual precipice.

Ms. SCHAKOWSKY. Let me just make one final comment. For 5

years before I went into the State legislature, I was director of the

Illinois State Council of Senior Citizens, so I can easily envision situations where frail elderly, women in particular, who are faced

with the choice of and posed with the question, do you want to be

a burden to your family?

Dr. BYOCK. Right, exactly.

Ms. SCHAKOWSKY. And to society.

Mr. BRINKLEY. It happens all the time.

Ms. SCHAKOWSKY. And wouldn’t it be better for you and for everyone if you just opted out? We have so far to go to offer people

at the end of life the option of living with dignity to now choose

the right to die I think is—or so-called right to die—I think is such

a serious mistake.

141

Dr. BYOCK. So many people that I speak with who are asking me

for help in dying say that for them the choice seems to be one between suffering on the one hand and suicide on the other. If that

is the choice that Americans face, it is no more a progressive extension of our personal freedoms than ‘‘Sophie’s Choice’’ in William

Styron’s novel was an expression of self-determination.

Ms. SCHAKOWSKY. For low income people, that seems to be the

choice, as you pointed out in your testimony, that low income people seem to have less access to pain medication and pain alleviation.

Mr. BRINKLEY. Burden on the family. The three major things— pain, insufficient pain management; the dignity at the end of life;

or putting an unnecessary burden on the family—are the three reasons that we come across all the time why euthanasia or assisted

suicide comes into play. None of those are necessary. We live in the

greatest country in the world. We have the resources, the people,

and the hearts and the souls in the legislature, in the government,

to step up and handle this. Why I support Ira in what he does, he

is out here with everything he has and just what you went through

and just what you are seeing, when a person hits a place where

they are going to burden their family, they have insufficient pain

management, which I think is somewhat a conspiratorial nature,

and they lose their dignity, and then Kaiser Permanente comes

along with a great suggestion of how to end it all, and the person

who is making that decision is a bean counter, he is not a doctor.

A doctor knows what he is doing.

I watch this all the time, and I watch the struggle that critical

care and palliative care doctors go through. I am just a guy. You

know I don’t have a—I don’t have those mixed feelings about it. I

am going to protect that person. We have to enlarge that scope for

critical care and palliative care doctors that they can be responsible, they can make the right decisions, and they can stand up and

fight for what a managed care or an HMO or PPA or PPW or whatever they are all called in making that decision, and we are capable. And why I am so proud to sit here today, and really proud, because Chairman Burton and Beth, and Chairman Horn and the

rest of the committee, you are stepping up to the plate.

It is not going to stay in the closet. It is going to come out and

be dealt with so 2 to 5 years from now or maybe 10 when it is us,

we have opened the door for graciousness, complementary and alternative therapies, legislative action, and a safety net so people

have a place to come. So thank you.

Ms. SCHAKOWSKY. Mr. Chairman, in honor of my father, if I

could just say that the one thing I learned from him is that you

don’t lose your dignity unless you give it away.

Mr. BRINKLEY. You got it.

Ms. SCHAKOWSKY. And he taught us all that. Thank you.

Mr. HORN. I thank the gentle woman from Illinois on that very

perceptive discussion and now I would ask does the distinguished

woman from Maryland wish to get into this?

Mrs. MORELLA. Absolutely, Mr. Chairman, and I want to thank

the panel and in advance the second panel because I think this is

a very important issue. Speaking to the chairman of the full committee, it is too bad we just have so many committee hearings and

142

mark-ups going on at the very same time, so that we cannot stay

with one committee throughout its entire duration to be able to

fully relish and absorb and respond to what is being said.

I, like Ms. Schakowsky, and probably others on this panel, have

experienced firsthand the difficulty with dying in the midst of a full

life. My sister died in 1976 at the age of 40, and we took her six

children into our family with our three. But she was fortunate or

we were fortunate in that we were able to provide a home environment where she was at home and she was at home with the family,

with the little children, and we all recognized that unless a miracle

occurred, that life was going to be shortened and therefore I think

it resounded in being as full of life and death with dignity and an

understanding of what was going to happen in the future with her

family.

With my mother, who died several years ago, hospice care came

into play beautifully, beautifully, and in fact we had the contributions sent to our hospice society because they were just there providing the same kind of thing that family were able to provide for

my sister. And so I know that the strides that have been made in

treatment and technology have made American medical prowess

the envy of the world and have lengthened the lives of many.

However, these advances have also created the unexpected consequence, the modern day medical nightmare, of a death alone, in

pain, without dignity, tethered to expensive equipment and machines. Through our efforts, Mr. Chairman, Congress is addressing

the nationwide outcry for alternative ways to relieve terminally ill

patients’ symptoms while comforting their spirits, supporting their

loved ones, and instilling in their families the hope of a peaceful

death.

With the support of the Life with Dignity Foundation, I became

an original cosponsor of H.R. 1149, which is entitled, the Advanced

Planning and Compassionate Care Act of 1999, to help Congress

respond to the critical needs of the terminally ill and their caretakers during this very difficult and traumatic time. I am encouraged that the National Institutes of Health, located within my district, has founded projects in palliative and end-of-life care. I look

forward to hearing from Dr. Patricia Grady, who will be on the

next panel from NIH, and I was pleased to be able to hear Dr.

Tian, who is also from my district. I am very honored to have you

here, sir, and to have the other experts on this particular panel.

I know that from a Capitol Hill breakfast briefing on end-of-life

care which took place in March 1998, Dr. Grady, as an example,

the Director of the National Institute of Nursing Research, gave

some detailed information on NINR’s research over the past 10

years related to the end-of-life care. So I think it is an important

issue. All Members of Congress should have access to the kind of

information and experience that you give us and the work that you

are doing. So I thank you.

I do not really have any questions. I was looking over the testimony and I was saying to the chairman I think that all of the

things you say make sense including even music. I have always

said I would really like to be listening to Puccini’s—one of the operas—probably La Boheme, I think, maybe Madame Butterfly. I

think that is a comforting factor, too, but we are talking about

143

making the end of life something as it should be and that is one

with dignity. Thank you.

Mr. BRINKLEY. A celebration. And that it is a celebration.

Mrs. MARKS. I think I would like to underscore what Dr. Byock

has said that you can’t go into a hospice unless you give up the

other treatment. I think that should be very seriously reconsidered,

because we couldn’t do that with my husband and he should have

gone in earlier. It means you give up all the conventional treatments, and that is not good for the patient psychologically, and I

also think we have to think about reshifting our resources through

Medicare and our finances, possibly to support other activities that

are not being supported now and to decrease some of the others.

Mr. HORN. We thank all of you, each and every one of you, for

the very fine statements you filed with us and for the questions

and answers and the dialog we have had with you. So thank you

very much for coming.

Mrs. MARKS. It was a pleasure.

Mr. HORN. We now dismiss the first panel and if panel two

would come forward, we will swear you in. Dr. Thomas V. Holohan

is accompanied by Dr. Judith Salerno; Kathy Buto; and Dr. Patricia Grady, Director of National Institute for Nursing Research, that

Mrs. Morella mentioned. Do you have any of your staff that might

well want to get into the dialog on some specific questions because

I would like to swear in everybody at once. Just one big baptism

rather than 10. I am used to the Pentagon and there are usually

three rows. OK. If you will raise your right hands.

[Witnesses sworn.]

Mr. HORN. The clerk will note that the four witnesses and two

that accompany the witnesses have been sworn in. So we will begin

in the order on the agenda and that will be Dr. Thomas V.

Holohan, the Chief of Patient Care Services for the Veterans

Health Administration, and I might say to all of you automatically

your full statement is put in the record when I call on you and we

go down the line with all four witnesses before we question you.

So we would like to get all out on the table with panel two and

then we can go back and you can comment on some of the papers

or thoughts some of your colleagues didn’t agree with you on, and

then we will have a discussion with the Members. So Dr. Holohan,

it is all yours and welcome.

STATEMENTS OF THOMAS V. HOLOHAN, M.D., CHIEF, PATIENT

CARE SERVICES, VETERANS HEALTH ADMINISTRATION, ACCOMPANIED BY JUDITH SALERNO, M.D., CHIEF CONSULTANT, GERIATRICS AND EXTENDED CARE STRATEGIC

HEALTH CARE GROUP, VETERANS HEALTH ADMINISTRATION; KATHLEEN BUTO, DEPUTY DIRECTOR, CENTER FOR

HEALTH PLANS AND PROVIDERS, HEALTH CARE FINANCING

ADMINISTRATION; AND PATRICIA GRADY, PH.D., DIRECTOR,

NATIONAL INSTITUTE FOR NURSING RESEARCH, NATIONAL

INSTITUTES OF HEALTH

Dr. HOLOHAN. Thank you, Congressman. I should comment that

I am also a constituent of Congresswoman Morella’s and I remember we had many candidates appearing at our Metro Station prior

to the last election day. The day after election day, very cold and

144

rainy, there was only one person there still shaking hands after the

election and that was Congresswoman Morella.

We are pleased to be here today and have the opportunity to provide testimony and to answer any additional questions the committee may have regarding the provision of medical care in the

Veterans Health Administration. I have previously testified with

regard to the Veterans Administration and complementary and alternative medicine. Today Dr. Judith Salerno, my Chief Consultant

for Geriatrics and Extended Care, will discuss a number of our programs and areas of interest to the committee. This will include care

at end of life, palliative care, and pain management as well as a

number of new initiatives to assist families and caregivers. In her

presentation, Dr. Salerno will also address some uses of complementary or alternative practices as they relate to these programs. Following her testimony, we will both be happy to answer

any questions that you may have. Judy.

Dr. SALERNO. Thank you, Dr. Holohan. VA has made a significant commitment to improving end-of-life care for our veteran patients. Because we are the largest integrated health care system in

the country and because our veteran population is older and sicker

than the general population, we recognize that VA had the opportunity to make inroads in improving care that ultimately will be

for the benefit of all Americans.

In 1998, a national VA summit was held bringing together experts from across the Nation. From that summit came three goals.

The first was that no dying veteran shall suffer from preventable

pain. Second, every veteran with terminal illness shall have an individualized plan for palliative services that minimizes suffering

and optimizes quality of life. And third, every veteran with a terminal illness shall have access to hospice care and/or palliative

care services.

Based on these principles, VA has crafted and implemented innovations in end-of-life care, pioneered faculty development programs,

and set performance standards to assure that our patients with terminal illnesses have comprehensive and coordinated care. While I

am proud to say that VA’s national performance, as measured by

our palliative care index, improved from 52 percent to 94 percent

systemwide in less than 2 years, it is but just a beginning.

With support from the Robert Wood Johnson Foundation, the VA

faculty leaders in end-of-life care project identified and supported

leaders at 30 medicine residency training programs, and are assisting them in implementing benchmark curricula for state-of-the-art

care for patients at the end of life. A website has been developed

as part of the project which is serving as a resource for all health

care professionals, both within and outside of VA.

VA operates 59 inpatient hospices and nearly all of our facilities

have hospice consultation teams. These teams work closely with

community hospice providers to offer home hospice care. Our own

home-based primary care program offers palliative care services in

the home to veterans who are seriously and chronically ill, and

their approach is that of an interdisciplinary team and often family

caregivers and community volunteers are included as members of

the health care team. This is especially important to terminally ill

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individuals who would not otherwise choose traditional hospice

care.

We have recently turned our attention to pain management.

While pain management and palliative care are hallmarks of excellent care at the end of life, we have recognized the need to develop

strategies for easing pain and suffering across all health care settings and at all times. In March, we launched a national policy

that says no patient served by the VA health care system should

suffer from preventable pain. That pain will be assessed as the

fifth vital sign in all VA health care settings.

In the next year, we will closely monitor our progress in achieving this goal. We are quite excited about a national leadership conference scheduled for November 2–5, which will bring together experts, innovators, and direct care providers in both end-of-life care

and pain management. It is our hope that this meeting will generate many new opportunities for networking, collaboration, and

advancing the state-of-the-art in palliative care.

I would like to briefly address support of services and complementary therapies. In our view, palliative care affirms life and

regards dying as a natural and profoundly personal process.

Any treatments that are supported by good evidence of safety

and effectiveness should be available to our veterans. Complementary therapies that are offered at some VA medical centers include

relaxation, visualization, music and art therapy, healing touch,

aromatherapy, massage, Tai Chi, and reminiscence or life review

therapy. The creative arts have been used in VA as a powerful

means of expression to help veterans and with the participation of

their families to reflect upon their lives.

Spiritual care and bereavement support is available to patients

at all VA facilities through VA’s active chaplaincy service and chaplains of all faiths function as key members of our interdisciplinary

team. VA also supports and encourages attention to multicultural

approaches to healing such as access to Native American healers.

Over the past 2 years, VA has made tremendous and measurable

strides in improving care at the end of life for our veteran patients.

There is much more for us to do to better serve the needs of our

dying and suffering patients. The extraordinary attention that VA

has received for its end-of-life and pain management activities

comes from the recognition that VA can lead by example and effect

change in the culture of health care. We remain steadfast in our

goal to provide excellent care that affirms life and achieves the best

possible quality of life through relief of suffering and compassionate care. Thank you.

[The prepared statement of Dr. Holohan and Dr. Salerno follows:]

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Mr. HORN. Thank you very much. Our next witness is Ms. Kathy

Buto and she is the Deputy Director of the Center for Health Plans

and Providers of the Health Care Financing Administration, part

of the HHS empire. So Ms. Buto, we would like the witnesses since

we have the statements to not read them but to summarize them

in 5 minutes if you could do it and then we will have more time

for questions.

Ms. BUTO. I hope it will even be shorter than 5 minutes.

Mr. HORN. Yes.

Ms. BUTO. Medicare and most Medicaid programs cover hospice

for terminally ill beneficiaries as you have already heard from

many of the previous panel members. We have seen a steady increase in the number of beneficiaries electing hospice and the number of certified hospices in Medicare since the benefit became covered more than 15 years ago. Nearly one in five Medicare beneficiaries now uses hospice services at the end of life.

The benefit is designed to give hospices great latitude in meeting

patients’ medical, psychosocial, and spiritual needs. Payment is a

set prospective rate for different types of services, allowing hospices

to use payment more flexibly. That means they can provide both

traditional services such as physician services, nursing care, and

drugs to control pain as well as social services, homemaker assistance, and other nonmedical services. At the discretion of each hospice and patient, hospices can use Medicare funds under this prospective system to provide complementary treatment such as acupuncture, massage therapy, music therapy, et cetera. So just to underscore that, the hospice has the flexibility to use funds in those

ways.

The Balanced Budget Act made a number of important improvements to the hospice benefit. We ensure under the BBA, that a patient whose condition improves or who wants to resume curative

care, can return to hospice at a later date. As Dr. Byock said, there

are now unlimited benefit periods in hospice. They are not limited.

And under the BBA, the hospices are required to provide data on

how they use Medicare funds, and this is really for the purpose of

allowing our agency to evaluate the rate structure and whether it

is really adequate. We expect that this will help us learn which

services are the most important to patients, as well as to be sure

that we are paying appropriately.

That concludes my oral statement. I know there are a number

of questions related to Medicare coverage, and I will wait.

[The prepared statement of Ms. Buto follows:]

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Mr. HORN. Thank you very much. And our last witness on this

panel is Dr. Patricia Grady, the Director of the National Institute

of Nursing Research, which is part of the National Institutes of

Health, Department of Health and Human Services. Dr. Grady.

Dr. GRADY. Thank you. Good afternoon, Mr. Chairman, and

members of the committee. It is a pleasure to be here today as Director of the National Institute of Nursing Research to discuss a

topic that affects all of us—how to ensure that the end of our lives

is as free of pain and other symptoms as possible; that this final

phase is one of comfort and dignity; and that our choices about care

are respected and implemented.

The NINR is the lead Institute within the NIH responsible for

coordinating research on palliative care at the end of life. Today I

will summarize conventional and complementary end-of-life research supported by the NIH. The goal is to discover how best to

promote quality of life leading to a peaceful death. But, first let me

provide some background.

Two national reports were published in 1997 that heightened

concern about end-of-life care. An Institute of Medicine report recommended a change of focus—from very aggressive conventional

care to one of palliative care in the final phase of life. A Robert

Wood Johnson Foundation study identified the undertreatment of

pain in terminally ill patients and a lack of awareness of ‘‘do not

resuscitate’’ preferences. NINR studies also supported these conclusions. Overall, the indications were that the public was not satisfied with care at the end of life.

This became a call to action. NINR convened an NIH workshop

on symptom management and terminal illness, in which palliative

care experts and scientists identified gaps in research and focused

on appropriate interventions to maximize quality of life. Dr. Ira

Byock of the previous panel participated in that workshop.

Next, NINR issued a trans-NIH program announcement to stimulate end-of-life research. The following year, in 1999, NINR issued

a request for applications, joined by seven other NIH components

and the Agency for Health Care Policy and Research. This request

has resulted in 12 funded grants so far.

Let me now briefly describe some of the new and ongoing NINR

supported research. We are testing interventions for cancer pain

using guided imagery, cognitive restructuring, and relaxation techniques. Guided imagery is also being tested to find out which patients with cancer pain will benefit. In another end-of-life study,

the use of acupuncture, massage therapy, vitamins, herbs, and nutritional supplements, in addition to conventional care is being assessed in patients with chronic illness. Other investigators are examining life support technology, especially mechanical ventilation,

to learn which aspects of maintenance and withdrawal of life support are considered problematic, something the chairman spoke eloquently about just a moment ago. Decisions about how life-prolonging technologies are influenced by hospital routines are being

examined. Ethnic and cultural differences in treatment preferences,

approaches to decisionmaking, and family caregiver satisfaction

with end-of-life care are also under study.

Two recent findings provide additional promise. A relaxation

technique and music therapy, when combined with the usual pain

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medication, provided better pain relief following abdominal surgery. Another study determined that patients can differentiate

whether difficulty in breathing is caused by distress and anxiety,

or whether it results from physical causes. This distinction will

help in selection of appropriate therapies.

Let me now turn to the research of seven other NIH components.

The Warren G. Magnuson Clinical Center on the NIH campus is

responsible for patients enrolled in approximately 900 clinical research protocols. The Clinical Center will initiate a multidisciplinary program to provide state-of-the-art pain management,

symptom control, and palliative care, and will include education

and research components. The Rehabilitation Medicine Department

provides support for patients with chronic pain using complementary techniques including massage, guided imagery, and acupuncture.

The Social Work Department provides counseling and information on palliative care and hospice support. Bereavement counseling and spiritual guidance are also available. The Bioethics Department is involved in end-of-life research studies.

The National Cancer Institute is examining the placebo effect in

pain treatment. Other studies include clarifying the relationship

between depression and chronic pain and determining the effectiveness of biobehavioral pain management in terminally ill patients.

The National Institute of Neurological Disorders and Stroke has

two recent basic research findings to help unravel the mysteries of

chronic pain states. Using gene therapy in an animal model, scientists were able to separate the normal protective sensation of

pain from the pain caused by disease.

The National Institute on Aging’s studies include how staff and

family manage end-of-life care in nursing homes, and how to reduce the stress of decisionmaking during the final phase of life. A

Dementia Study Group is conducting research in the care of latestage Alzheimer’s patients using a hospice approach and with progressive limitations on medical interventions.

The National Institute of Dental and Craniofacial Research

shares the lead with NINDS of the trans-NIH Pain Consortium

and will operate the Pain Research Clinic at NIH. A recently developed animal model of gene therapy for restoration of saliva production could help end-of-life patients chew, swallow, and speak.

The Office of Behavioral and Social Sciences Research is cosponsoring an NIH workshop next week on ‘‘Spirituality, Religion and

Health.’’

And on a strong closing note, the National Center for Complementary and Alternative Medicine’s palliative care research focuses on increasing patient comfort, diminishing pain, and easing

symptoms. Of note is research on therapies that may benefit endof-life patients, such as hatha yoga, acupuncture, St. John’s Wort,

and ginkgo biloba.

In conclusion, with sufficient emphasis and resources, end-of-life

issues can be resolved by health care research and practice commuVerDate 11-MAY-2000 08:06 May 22, 2001 Jkt 071843 PO 00000 Frm 00171 Fmt 6633 Sfmt 6602 E:\HEARINGS\62366 pfrm12 PsN: 62366
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nities. NINR is pleased to have a central role in addressing how

we might achieve these results. Thank you, Mr. Chairman. I will

be happy to answer any questions and I will also be happy to respond to the concerns of the previous panel.

[The prepared statement of Dr. Grady follows:]

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Mr. HORN. Well, if you would just answer my first question. I am

interested in, one, were there any reactions you had to panel one;

No. 2, did you have any reactions to your colleagues on panel two?

So you have opened it up, Dr. Grady, so let us start.

Dr. GRADY. OK. What I would like to say is that many of the

studies that I have just described, we expect to serve as a basis for

the development of future interventions to improve quality of care

for terminal patients and their families. We were gratified and

even a little surprised by the extent of the response to the request

for applications we issued last year. We had over 100 responses

with applications and we expect many of these to be resubmitted.

They were favorably reviewed and looked very promising. So we

feel that not only what we have begun funding is a step in the

right direction, but it will serve as a basis for future studies.

Also, one of the concerns of the previous panelists was about the

training and what is being taught in schools for people who are

health care professionals. One of the studies I would draw your attention to that we have just funded, is a study to improve clinician

and family communication in ICUs, a matter that was of some concern to the previous panel. The study is addressing those issues,

but one of the long-term goals and outcomes of the study will be

to use that information, incorporate it into the curriculum for training physicians, nurses, and other health team members who will be

working with those who are terminally ill at the end of life.

I would also like to say that there were some concerns expressed

about the National Center for Complementary and Alternative

Medicine and would simply say that many of the studies I described in complementary medicine do reach across the NIH and in

this brief time I can’t address all of that, but what I would say is

that the Center, what was previously an Office of Alternative Medicine, has become the National Center for Complementary and Alternative Medicine. It has increased statutory authority so that it

will now have the ability to independently make grant awards in

the area of its science. A new Director has been hired for that position. The budget has almost tripled over the last year and the first

meeting of the Advisory Committee of the new Center was just recently held. In fact, Beth was an invited participant in that and

spoke. I have seen her testimony although I wasn’t there and I

have met with the new Director. He is meeting with all the IC directors across the campus and he is extremely enthusiastic and

committed to building the Center and so I think that the suggestion that was made to look forward is a good one. We are very, very

optimistic.

Another issue is that the science is moving and this is an area

of new science, end-of-life as an issue. One of the previous panelists

said that no one wanted to talk about it before. It is something that

we all must face, like it or not, but it is as yet a relatively uncharted area. So it is a new science and all of those who are working in the area are among the pioneers who are building the

science base and the knowledge base for compassionate and appropriate care for the future.

Mr. HORN. On the issue of training and medical schools in particular, does NIH keep any data as to the evolution of medical

school curricula and to what degree do some of the areas we are

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talking about here come into the doctor’s mind before they get their

union card known as the M.D.?

Dr. GRADY. We have frequent meetings and keep very close interactions with the American Association of Colleges of Medicine and

also the American Association of Colleges of Nursing. I left the latter meeting—I gave a speech this morning before I came here—so

although we do not dictate the curriculum as such, all of these

schools have accreditation bodies and we are in close communication with them and are often sought out for our expertise on what

is an important part of the curriculum.

It is hoped, of course, that the results of research studies will be

quickly incorporated into practice and into the curriculum and we

do our best to try to ensure that that is not only a possibility but

that that does happen.

Mr. HORN. Well, I think you are probably right. In some cases,

it happens, but it would be sort of helpful if their accreditation

standards and criteria had some of these things in it and that is

not a new thought for medical schools. Nutrition was certainly one

where doctors didn’t seem to have the slightest idea what was

going on in nutrition. So I would ask staff and without objection,

we will put it at this point in the record.

Dr. GRADY. We would be happy to supply that for the record in

more detail.

Mr. HORN. Thank you.

Now, before we finish with you and you get into it again, I am

sure, did anything your colleagues say jar you at all?

Dr. GRADY. Well, we try to do our best to interface about how we

can best get the research results into practice. The concerns that

I heard this morning and that we are hearing more in the studies

that we are carrying out and, in fact, influence the research that

we are able to carry out are the issues related to terminally ill patients going to hospice care and having to give up the options of

conventional therapy.

Also, the issue about the 6-month terminal illness, 6 months to

the end of life. That presents difficulties for us in terms of trying

to carry out cohesive studies that we can predict from, because it

is difficult to anticipate 6 months from the end of any one person’s

life. So we are working with populations that are difficult to compare one person to the next and so we are concerned some of the

findings may not be generalizable. So we are releasing findings

that are somewhat more qualitative in some cases but we feel are

informative. I think those were the two major issues.

Mr. HORN. Ms. Buto, do you have anything you would like to add

either that the first panel said that you didn’t like or that your colleagues said that you didn’t like?

Ms. BUTO. It is hard not to like the first panel.

Mr. HORN. Or that you did like?

Ms. BUTO. Let me address three issues that have been raised

both by Dr. Grady and the first panel. The first one is the 6-month

requirement that is in the statute as well as the requirement that

individuals who elect hospice give up conventional therapy, essentially the conventional Medicare benefits.

First of all, these requirements are written into the statute. That

doesn’t mean they can’t be changed, but I think as we look at the

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issue of changing both of them, one of the difficulties is if the timeframe becomes indefinite or less clear for the hospice benefit, in

other words, you are eligible for hospice if you have an illness or

condition that will ultimately lead to death, the difficulty there is

that many of our beneficiaries are in a situation where they have

chronic conditions—congestive heart failure, COPD, et cetera.

We are, in Medicare, looking at more creative options for the

chronically ill. In fact, the Balanced Budget Act gives us some authority to do care management programs around chronic illness. If

you remove the criteria at the same time, we are in a situation

where, under hospice, we have a prospective payment system that

allows coverage of drugs, for example, which, as you know, Mr.

Chairman, are not available to most Medicare beneficiaries. Many

of them need drugs, need that kind of therapy.

Mr. HORN. We hope we will solve that problem in either this session or in the early——

Ms. BUTO. We hope so. We certainly hope so and I know that the

Congress is looking at that.

Mr. HORN. Early in the next session, in one or the other.

Ms. BUTO. But in any event, while that disconnect or that inequity exists, we are happy that drug treatment is available as one

of the optional services under hospice. It is also available in Medicare HMOs. But until prescription drugs are covered more broadly

in Medicare, if you extend the period of coverage such that any individual with chronic disease or serious chronic disease would be

eligible for hospice, I think the issue is can we do that until we

have a drug benefit? We would like to see enactment of a Medicare

drug benefit and then, certainly, I think the issues around all of

the benefit structures need to be looked at in relation to that. What

I am trying to say is it is not an easy issue. I certainly understand

the concerns that have been raised.

I also wanted to deal with the question of medical education,

which you raised. As you know, Medicare finances medical education in this country almost exclusively and, again, I think as part

of Medicare restructuring, there are a lot of efforts to look again

at that pot of money to say, should it be related to Medicare, or

should it be its own separate trust fund? And how shall it be financed, in what ways does it reflect the priorities of the country

in terms of the curricula and so on? And of course, that is a very

delicate issue. So I think this is a good time to talk about the curriculum.

Mr. HORN. You raise an interesting point because your clientele

is primarily 60 to 65 years in age and up. To what degree do we

know that the typical medical student, and not that there are internships anymore, but in residencies, what do we know about the

type of clientele they will run into in terms of the hospitals they

are assigned to? Do you know what proportion of the bills are paid

nationwide by Medicare?

Ms. BUTO. Forty percent of hospital inpatient bills—they aren’t

really bills—40 percent of the inpatient hospital revenues come

from Medicare on average. That is higher for some hospitals and

lower for other hospitals. So it is a significant amount and, of

course, we spend a lot on medical education as well.

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What we are seeing in hospital medical education, again because

of some changes in the way we pay, is a greater emphasis on primary care and associated specialties like geriatrics and pediatrics,

for example. So that is occurring, but the degree to which curricula

reflect the kinds of issues that have been raised here today, I think

again the AAMC, the American Association of Medical Colleges,

would be a good place to get that information.

Mr. HORN. And it would be the kind of thing, it seems to me,

Medicare and VA and others maybe at their national conventions

of the medical schools could be putting on exhibits, and all the rest

of it and panels in terms of how one deals with people that are elderly as opposed to people that are a little more youthful.

Ms. BUTO. Our colleagues at the Health Resources and Services

Administration have a lot to do with the training programs for

health care professionals. I know they are also active in this area.

And then I wanted to address briefly the coverage question that

keeps coming up about Medicare and covering alternative and complementary therapies. First, to say that on the issue of acupuncture, I think what we need to do is review the NIH Consensus Conference proceedings in light of our current coverage rules which do

not allow Medicare to cover acupuncture. Having said that, and we

will review those for issues around Medicare coverage, I think it is

important for people to understand how Medicare covers services.

We cover them in two ways. We cover them institutionally, hospital

services, physician services, home health services, nursing facility

services, and so on. We also cover them by certain practitioners.

We cover mainly physician services in terms of individual practitioners. Increasingly, in the last few years, we have covered nurse

practitioner services in some circumstances, nurse midwives and

physician assistants. We have chiropractors covered for only one

service in Medicare and so the issue of our looking at coverage is

probably in relation to the structure in which Medicare operates.

Having said that, I think the structure in which Medicare operates is pretty flexible. We know that not only do hospices cover

complementary therapies but also Medicare HMOs are able to

cover alternative therapies and alternative practitioners, and they

do that.

Mr. HORN. Is it just for HMOs?

Ms. BUTO. For hospice as well. Are you asking if they just cover

it for HMO enrollees?

Mr. HORN. Right.

Ms. BUTO. Yes, HMO’s offer a benefit package and it includes

Medicare covered services and additional services.

Mr. HORN. Now did you need the authority of the Ways and

Means Committee to do that?

Ms. BUTO. Yes.

Mr. HORN. Or do you have that authority?

Ms. BUTO. It is part of our authorization for the Medicare Plus

Choice Program, Medicare HMO and prepaid health care program.

We have that authority.

Mr. HORN. Having heard of all the options this morning, to what

degree is Medicare able to implement some of those without law?

Or do you have the authority to do it?

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Ms. BUTO. Again, we can look at the coverage of acupuncture

services. The part where—again, I don’t want to mislead—is that

we don’t have a category of practitioner, an acupuncturist, who is

eligible to receive Medicare payment. So we do not that—— Mr. HORN. Why is that? Why is it that we don’t?

Ms. BUTO. The statute is a medical model. It was built in 1965.

Mr. HORN. I know. I was on the drafting team.

Ms. BUTO. It is finally evolving to the point where we are finally

covering some preventive services for the first time like mammography screening and flu vaccine and so on, but that has been really

in the last 2 or 3 years. But having said that, the service itself in

the context of an HMO, in the context of hospice, we are now moving to pay prospectively home health agencies, skilled nursing facilities, hospitals get a prepaid amount. All of them have the flexibility under prospective payment systems to incorporate complementary therapies if they want to.

So within these broader payment structures, individual practitioners can get paid by the hospital, by the nursing home, by the

hospice, and by the HMO.

Mr. HORN. Well, can Medicare provide funding for those particular practitioners in a new evolving field? I mean how do you

handle that? It isn’t just acupuncture. I mean there must be breakdowns of particular specialties even into more special things.

Ms. BUTO. Right. What we are going to, though, is I guess what

we call in sort of the financing world bundling payments so as we

move to a situation where we are paying in advance for a beneficiary who enters the hospital, the whole amount for the episode,

the hospital can provide a wide variety of noncovered services from

that amount and to the extent they find them cost effective they

are doing that. They cover experimental drugs, for example, and

they cover other things that are not within the Medicare benefit

package.

We, again, for skilled nursing facilities, for hospice, for home

health, we are also moving in that direction. So we will have an

episode payment in home health that will cover 60 days and the

services within that are flexible that can be provided. And that is

really the way the program is generally going. We do still pay for

individual services if physicians provide and those are the cases

where a physician service is delivered. Again, there are some instances, but they are not very frequent, in Medicare where there

are other practitioners who get payment from the program directly.

Mr. HORN. Well, let me ask you about the 420,000 patients that

use $2 billion in Medicare hospice services. This equates to just

under $48,000 for an average of 48 days and how much would 48

days of hospital care cost? Do we know those figures or just file

them for the record?

Ms. BUTO. We can get them for the record.

Mr. HORN. Fine.

Ms. BUTO. Of course, some of those patients do use some hospital

care as well, but the hospice payment is set for that. There is a

separate rate for the hospital stay.

Mr. HORN. Well, the whole idea in 1965 was to get people out

of the hospitals into the skilled nursing home and the only thing

else we provided was home care and we only knew of one city that

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had it, which was Detroit at that time, that had any extensive program there. So that was certainly the approach. And is massage

therapy and acupuncture reimbursed by Medicare and Medicaid?

Ms. BUTO. I can’t speak for Medicaid because the States have

tremendous flexibility. In fact, I believe 10 States don’t cover hospice. We know that 40 do.

Mr. HORN. So 40 do under Medicaid then.

Ms. BUTO. Under Medicaid cover hospice services. It is an optional service. Many of them do cover a number of alternative services including homemaker services. Again, Medicare’s coverage

would be probably through our broader payment systems, the use

of services, but within the umbrella of paying a given provider who

is authorized to receive a Medicare payment.

Mr. HORN. Now you have got a 6-month rule, for want of a better

expression of it, what does that apply to and why is it 6 months?

Ms. BUTO. Well, as I understand it, and I wasn’t around when

the statute was enacted, that at the time it was enacted, all the

research that was looking at end-of-life care was based on the last

6 months of life. So when the statute was enacted, as I understand

it, it was designed to serve individuals who would be thought to be

by their physicians in the last 6 months of life.

Now, as many people have said on the previous panel, that is not

a cap, that is the physician’s judgment that an individual is in the

last 6 months of life. But that is my understanding of how it came

about.

Mr. HORN. Now what statute specifically are you thinking of on

the 6-month aspect?

Ms. BUTO. It is the Medicare hospice benefit.

Mr. HORN. I see. And when was that enacted?

Ms. BUTO. 1983 is when it went into effect. I think it was enacted in 1982.

Mr. HORN. Yes. That is before my time so that is why I am a

little rusty on what that is, but you are taking that authority then,

the 6-month rule?

Ms. BUTO. That established the benefit for Medicare.

Mr. HORN. OK. Well, let me move to the Veterans Administration now and ask a few questions. First, I would like to ask, was

there anything on panel one that was said that you didn’t particularly like, and anything any of your colleagues here said that you

didn’t like or did like? Just giving you a chance on the record one

way or the other.

Dr. HOLOHAN. From my point of view, not particularly, Congressman. Dr. Salerno.

Dr. SALERNO. I would just like to say that Mr. Brinkley’s remarks about the care for veterans and the need to do more is well

appreciated. That is why we have confronted this issue with a national policy to improve care and we feel that we have the means

to do a better job and we will by all veteran patients, and our goal

is not to take care of some with appropriate end-of-life care but all

of our veteran patients when the need arises.

Mr. HORN. How many veterans are currently in the VA hospice

program?

Dr. SALERNO. It varies. Inpatient hospice, sir?

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Mr. HORN. Well, I will give it to you either way. What are the

other categories besides inpatient/outpatient?

Dr. SALERNO. Well, we contract for community services. We provide palliative care services through our home care which aren’t

traditional hospice services but at least half of the patients have

a terminal diagnosis. So there is a lot of palliative care that is provided that isn’t traditional hospice.

Mr. HORN. Well, I will tell you I will just—some of these questions—let me read them into the record, and if you wouldn’t mind,

work with staff and let us try and get the answers. I don’t want

to put you on the spot on some arcane figure that nobody has

thought of for a few months.

How many veterans are currently in the VA hospice program,

and break it down by categories in terms of community, in and out,

and any other ways that you look at it that way? Basically it is

finding out where all the hospice aspects are. Chairman Burton

had some thoughts this morning when he listened to the complementary therapies such as acupuncture, music therapy, massage, so forth—are those available at all VA facilities?

Dr. HOLOHAN. As far as we know, not at all. We commissioned

a study done by a contractor to look at complementary and alternative medicine in the VA. Their sample was probably not exhaustive to all 172, but they did survey practices in all 22 of the Veterans Integrated Services Networks, and they did several series of

site visits, and it appears in their report that there is a fair amount

of complementary and alternative practices at many VAMCs, probably the majority. They are not uniform and they probably represent the interests of a local champion or the interests of a particular administrator or manager.

Mr. HORN. Any comments, Dr. Salerno, on that? Anything else

to say?

Dr. SALERNO. Yes, I think that we are particularly strong in VA

in the arts, in all the creative arts programs, and we have attempted to disseminate the models of excellence in creative arts

therapy throughout our nursing homes programs and all other VA

settings, and we have a long relationship, 10 years, I believe, with

the very special arts, and we are working to continue developing

those into more services provided for patients in the last phases of

life.

Mr. HORN. We have got music therapy, we have painting therapy, we have drama therapy, all sorts of therapies in the arts. Is

there any way the VA has a way to sort of figure out which ones

they are using?

Dr. HOLOHAN. All of the above.

Mr. HORN. Are they successful or aren’t they? Pardon?

Dr. HOLOHAN. We are using all of them.

Mr. HORN. All of them.

Dr. HOLOHAN. All of the modalities you just mentioned.

Mr. HORN. Well, why don’t you give us what you are using

around, and I am sure there are five others by now, but just let

us know to what extent are they in the VA hospitals and then if

it is a VA clinic, are they also in that? What are the other categories of basic infrastructure that you have in the VA? The medical centers, hospitals?

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Dr. SALERNO. Right. 131 nursing homes.

Mr. HORN. Clinics? Yes, OK. Nursing homes. What else?

Dr. HOLOHAN. Well, there are community-based outpatient clinics. There are vet centers which are basically rehabilitation counseling, but they have—particularly in the west—worked very closely with Native Americans to provide interventions for PTSD and

readjustment counseling that are Native American in origin. Dr.

Salerno mentioned the number of nursing homes. In the contractor’s survey on the VA, one-fifth of all the questionnaires returned

came from personnel in VA nursing homes.

Mr. HORN. Well, however you want to arrange it, if we could just

get a little exhibit at this point in the record, it would be helpful

I think to see the degree of penetration either in depth or on a

broad scale and where the services might not be provided and

where they are and what was the basis for that decision? Is it

money or need or whatever?

And then, of course, we would like to know what is their average

length of stay in the hospice program? Is that similar to other hospice programs? How relevant is what the VA does to what also goes

on in other major medical institutions, non-VA?

Dr. SALERNO. Yes, in our formal, traditional hospice program,

our length of stay is similar to that under the Medicare program.

However, we have a number of models that would not fit the Medicare hospice model where active treatment and end-of-life planning

can occur simultaneously and we have a number of—17 of our medical centers participated recently in a collaborative with the Institute for Health Care Improvement to look at models of end-of-life

care for patients with congestive heart failure and chronic obstructive pulmonary disease. These are the ones where the prognosis,

the 6-month prognosis, is some of the most difficult and very prevalent in the veteran population.

So we do not have for the VA provided care those sorts of constraints, so we feel that we have the ability to innovate, try new

things, look at models of care that might be an example for what

the future holds for the rest. Thirty-six percent of the veteran population is elderly, so we have ample opportunity to do it, but we

need to do it now, and we don’t have the luxury of waiting till the

year 2015, 2030, before we start getting programs moving.

Mr. HORN. We heard from Mr. Brinkley this morning about a

Compassion in Action program. Can that be expanded to more VA

facilities?

Dr. SALERNO. We understand that as a VA system, we can’t do

it alone. We need to reach out to all of our and as many community

partners as want to work with us to provide the care and the excellence that we want to give to our veteran patients. We are happy

that seven of our medical centers are working with Compassion in

Action or they are working with us—seven medical centers. I would

like to see that in 170 of our hospitals. We are open to trying to

do something on a more rather than one-by-one basis, but to really

encourage the field to do more actively.

We need volunteers. The backbone of our system is volunteer,

and we will work very hard with our veteran service organizations,

Compassion in Action and any other groups, to really provide the

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services that will extend our ability to give the care that we think

veterans deserve.

Mr. HORN. In the testimony you have made, you noted the strategic goals for pain management, planning, and access to programs.

Are these goals currently being met?

Dr. SALERNO. We just introduced the pain management strategy

in VA in the spring. Within 2 weeks, we had a toolkit for pain

management in the hands of every medical center available to all

staff on the Internet, and we had a patch in our computerized patient record system where we put pain assessment, a very simple,

straightforward zero to 10 scale in the computerized medical record

under the vital signs package.

So our intention this year is to put in place a performance measure, looking specifically at how well we are doing. While we understand that measuring how many times people assess pain does not

really tell us how well it was done or whether we have made any

headway in really addressing pain issues, we intend to as part of

the kickoff for our meeting in November, we intend to really put

the tools to be able to manage pain effectively in the hands of all

clinicians who practice in the VA.

Mr. HORN. Again, some of these questions we could put with that

earlier exhibit. Do all VA facilities have inpatient hospice programs? Do each of these programs have hospice trained volunteers?

And then just getting on to how many patients is a nurse assigned

to care for? I assume that depends on the type of ward it is or the

relation to the disease or process, whatever happened. So I think

you have probably got those data and we will just put in the record

without objection. So I am sure there are other questions staff on

both the Democratic side and the Republican side might well be

asking and everybody is under oath and if you would do us the

favor of answering some of their questions, we will put those in at

this point.

I am going to conclude with Dr. Grady. We started with you, Dr.

Grady.

Dr. GRADY. Yes.

Mr. HORN. So we are going to conclude with you. Would you

summarize what the complementary therapies can be? NIH seems

to say they are appropriate to provide during end-of-life care. How

do those work, I mean the complementary ones?

Dr. GRADY. The studies that we are doing now, we expect to be

able to point in the direction to which of these therapies are most

effective, but the full range of therapies that have been mentioned

this morning are being tested, the guided imagery, the music therapy. In fact, I gave one example of a study that was very successful

using music therapy, massage therapy and others as well. So that

really almost for each one that has been mentioned, there is a

study addressing it.

Some of these studies are further along than others. But as I

said, this is a new science and so many of these studies are really—this is the first time that these have been looked at in a systematic way with a larger population. Some areas are smaller populations simply because it is just one of the first times those questions have been asked.

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The therapies are being tested out in acute hospital settings, in

home care settings, and in hospice settings. We have a number of

studies that we are working with the VA system, in fact, across the

country. Some of those are targeted to the elderly and we expect

to learn information to be used at end of life so that we are really

going across almost the whole gamut.

The issue that came up in the earlier panel, and I think is an

important one to consider, is the issue of getting the results into

practice and that is a more difficult issue. We expect to be able to

provide the findings that say these things seem to, this therapy, for

example, seems to be more effective in this population of patients

at this time at the end of life, but getting any new therapy into

practice these days is a whole lot more difficult than it used to be.

The scrutiny is much greater because of a variety of issues. Included in these are really related to the standard that is required

in order for a new therapy to be implemented. We are looking at

evidence-based practice issues. We are looking at outcomes research requirements. We are looking at managed care constraints

and the fact that there are such a wide variety of choices that, as

Mrs. Marks was mentioning this morning, it is a little confusing for

patients to determine how to select from which of these that may

be available.

So again we feel that it is important that we support these studies and that they are carried out in the best interest of the patient

so that we get information that is reliable. Which of these therapies are reliably effective? Which are safe? And in fact, that we can

provide that information. But then the next step is trying to get

help, work with other agencies to get those therapies into practice

and paid for.

Mr. HORN. On the therapies, does that really come out of physical therapy or does it come out of chiropracting or what?

Dr. GRADY. All of the above.

Mr. HORN. Yes. I guess I am just trying to figure out, is there

a program somewhere either in medical schools or health schools

where they get into massage therapy? I am just not familiar with

it.

Dr. GRADY. Yes. There has not been up until recently. These, as

has been addressed earlier this morning or earlier this afternoon,

are relatively new on the horizon of treatment choices. The fact

that they have been available even on a small scale has not been

something that people have always known about. Now that there

are more complementary centers across the country and alternative

medicine centers, the consciousness of people is being raised so

they are beginning to ask questions. We plan to be the ones who

provide a great deal of information to clarify which of these work

the best and in what circumstances.

Mr. HORN. Now are most of these therapies licensed by the various States? I think physical therapy certainly is.

Dr. GRADY. Yes. Physical therapy involves an educational training program and licensure. For others, the answer is in some cases

there are types of licensure, but in terms of having an overall licensing board, most of these do not. So the issue of quality control

is constant, for example, if someone is trained by Dannion or Ira,

they will have acquired a certain set of skills and abilities and that

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will be predictable. In other cases, it is not predictable. So you

raise a very good and a very important question.

Mr. HORN. Well, it is interesting the comparability between

States. As you know, in some areas like the uniform State laws,

there is a group of commissioners that try to get the same language

on the books everywhere. I don’t know the degree to which a similar relationship exists between the States although they are all organized now, both Governors and everybody else, and it might well

be that you could get some common standards there which would

bring dignity to some of the professions.

Dr. GRADY. Yes. Our concern is similar to those of nearly everyone who has expressed their thinking today; the concern to help to

provide the best care for the patients and make available for them

the most effective therapies, but also keeping in mind that we have

a certain role related to safety and health and welfare in a protective sense. So we are really trying to strike the balance as is everyone else, I believe.

Mr. HORN. Now, would you explain to us a little more about the

music therapy project and the pain management? What else is

being done in that area?

Dr. GRADY. Yes, I can describe the study that I alluded to earlier.

This is a study that was completed earlier this year. It used a jaw

relaxation technique and music therapy for individuals in a clinical

trial where patients either had the regular therapy, or they had the

relaxation therapy and the music therapy in addition to regular

therapy for pain. That is routine pain medication.

Mr. HORN. You used the word ‘‘jaw’’ there. Give me that again.

Dr. GRADY. Yes. It is you can using the relaxation technique, you

can focus on one particular part of your body and will it to relax,

and this particular relaxation technique uses the jaw. So that if

you are sitting in a particularly long committee meeting and you

are wanting, hoping someone will finish talking——

Mr. HORN. I am thinking of the House floor actually and we have

got a lot of patients out there.

Dr. GRADY. Yes. I can provide more information on this for you,

but you can will your jaw to relax. There is a tendency for people

to clinch their jaw when they are either bored or anxious or in

pain, and so this technique focused on relaxing the jaw, willing it

to relax, and teaching the person to be able to do that at will. And

so the combination of that and the music therapy, the combination

of those two alternative therapies or complementary therapies with

the routine pain medication was more effective than the pain medication alone, in terms of relieving pain and for longer periods of

time. It was a very interesting finding and has a very practical approach for individuals. This was for people who were having major

abdominal surgery but it is expected that the approach is likely to

work in other situations such as end of life.

Mr. HORN. What about the music therapy? We mentioned here

the painting, drama, all the rest? Have we got any studies NIH is

doing in those areas?

Dr. GRADY. Not using drama therapy. Using music therapy and

guided imagery and other situations, yes. But I don’t recall any

using drama therapy.

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Mr. HORN. Now I have a number of cultures in my congressional

district. In fact, in the Long Beach Unified School District, which

is fifth largest in California, there are 70 different languages spoken in the household of the parents, and that is true also of the

city of Los Angeles which is simply the bigger city and we are the

second city and there are 79 others in the 10 million person county.

So we have a lot of cultures that are different. A lot of them are

recent immigrants, so forth. So what are the differences that we

know between cultures on making end-of-life decisions?

Dr. GRADY. We can help to get started to answer that question.

The 70 we can’t address yet. But we are funding studies to look at

the differences in preferences, cultural differences in Hispanic and

African American as well as Caucasian populations related specifically to decisions about treatment, what type of treatment, whether

to accept treatment. The decisions about how to make decisions, in

fact, because there are differences in whether or not the individual

makes the decision, whether the families gather together to make

the decision, whether, in fact, the family makes the decision for the

individual in certain circumstances.

So those are the areas that are being addressed. Also, caregiver

preferences, whether or not the individuals wish to provide

caregiving at home versus other settings, and who would be the

person to give it? We have a number of studies that look at caregiver support. One of the issues we found in several areas and particularly in end-of-life is that the caregivers, it has been mentioned

these are mostly women, but the caregivers tend to have difficulty

meeting the demands that are required to fulfil that role, both in

terms of the training needed, but also in terms of their own energy

and coping skills. There are some cultural differences in that area

so that is also under study.

Mr. HORN. Anything anybody would like to add to this discussion? This is your last chance. We are about to close down. Doesn’t

look like we have got too many volunteers, but we really appreciate

each of you and your statements and your interaction.

As usual, I want to thank the staff that put all this together. The

majority staff here is Beth Clay to my left and your right, and

Heather Bailey and Carla Martin on the majority staff, and then

the minority staff, Sarah Despres and Kristin Amerling, and the official reporter, Victoria McLaughlin, and we thank you for all you

are doing. So thank you very much and we will hope to get the information in the next 2 weeks. We will work it into the hearing

and you all have been excellent witnesses and we are adjourned.

Dr. GRADY. Thank you, Mr. Chairman.

[Whereupon, at 4:40 p.m., the committee was adjourned.]

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