[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

                              ----------                              
                                                                   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

                              ----------                              


                       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:]

[GRAPHIC] [TIFF OMITTED] T2366.001

[GRAPHIC] [TIFF OMITTED] T2366.002

    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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    [GRAPHIC] [TIFF OMITTED] T2366.004
    
    [GRAPHIC] [TIFF OMITTED] T2366.005
    
    [GRAPHIC] [TIFF OMITTED] T2366.006
    
    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:]

    [GRAPHIC] [TIFF OMITTED] T2366.007
    
    [GRAPHIC] [TIFF OMITTED] T2366.008
    
    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.
    [The information referred to follows:]

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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.]

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