[House Hearing, 106 Congress]
[From the U.S. Government Publishing Office]
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
______
__________
U.S. GOVERNMENT PRINTING OFFICE
62-366 WASHINGTON : 2000
COMMITTEE ON GOVERNMENT REFORM
DAN BURTON, Indiana, Chairman
BENJAMIN A. GILMAN, New York HENRY A. WAXMAN, California
CONSTANCE A. MORELLA, Maryland TOM LANTOS, California
CHRISTOPHER SHAYS, Connecticut ROBERT E. WISE, Jr., West Virginia
ILEANA ROS-LEHTINEN, Florida MAJOR R. OWENS, New York
JOHN M. McHUGH, New York EDOLPHUS TOWNS, New York
STEPHEN HORN, California PAUL E. KANJORSKI, Pennsylvania
JOHN L. MICA, Florida PATSY T. MINK, Hawaii
THOMAS M. DAVIS, Virginia CAROLYN B. MALONEY, New York
DAVID M. McINTOSH, Indiana ELEANOR HOLMES NORTON, Washington,
MARK E. SOUDER, Indiana DC
JOE SCARBOROUGH, Florida CHAKA FATTAH, Pennsylvania
STEVEN C. LaTOURETTE, Ohio ELIJAH E. CUMMINGS, Maryland
MARSHALL ``MARK'' SANFORD, South DENNIS J. KUCINICH, Ohio
Carolina ROD R. BLAGOJEVICH, Illinois
BOB BARR, Georgia DANNY K. DAVIS, Illinois
DAN MILLER, Florida JOHN F. TIERNEY, Massachusetts
ASA HUTCHINSON, Arkansas JIM TURNER, Texas
LEE TERRY, Nebraska THOMAS H. ALLEN, Maine
JUDY BIGGERT, Illinois HAROLD E. FORD, Jr., Tennessee
GREG WALDEN, Oregon JANICE D. SCHAKOWSKY, Illinois
DOUG OSE, California ------
PAUL RYAN, Wisconsin BERNARD SANDERS, Vermont
HELEN CHENOWETH-HAGE, Idaho (Independent)
DAVID VITTER, Louisiana
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
C O N T E N T S
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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
IMPROVING CARE AT THE END OF LIFE WITH COMPLEMENTARY MEDICINE
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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. 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 testify 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 responses 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 end-of-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 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-of-life 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.
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 4\1/2\ 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 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.
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.
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 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-of-life 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 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. 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 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 2\1/2\ months with numerous downs such as
aspiration pneumonia, we organized a day of prayer throughout
our city, prayer for his recovery 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 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 Clinical 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. 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.
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.
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.
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 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 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.
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.
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 drug-intensive 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 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 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 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 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 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 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 Arthritis 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 and really nurture
the family process when people are being admitted 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.
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 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 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 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
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 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 late-stage 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 end-of-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 communities. 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 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 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.
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?
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 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?
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?
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 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.
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 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.
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.]