[Senate Hearing 109-80]
[From the U.S. Government Printing Office]



                                                         S. Hrg. 109-80

             HEALTH CARE PROVIDED TO NON-AMBULATORY PERSONS

=======================================================================

                                HEARING

                                 OF THE

                    COMMITTEE ON HEALTH, EDUCATION,
                          LABOR, AND PENSIONS
                          UNITED STATES SENATE

                       ONE HUNDRED NINTH CONGRESS

                             FIRST SESSION

                                   ON

EXAMINING HEALTH CARE PROVIDED TO NON-AMBULATORY PERSONS, FOCUSSING ON 
THE MEDICAL, SCIENTIFIC, AND ETHICAL ISSUES INVOLVED IN THE DIAGNOSIS, 
     TREATMENT, AND DECISION-MAKING FOR PATIENTS WITH DISORDERS OF 
            CONSCIOUSNESS RESULTING FROM SEVERE BRAIN DAMAGE

                               __________

                             APRIL 6, 2005

                               __________

 Printed for the use of the Committee on Health, Education, Labor, and 
                                Pensions

                    U.S. GOVERNMENT PRINTING OFFICE
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          COMMITTEE ON HEALTH, EDUCATION, LABOR, AND PENSIONS

                   MICHAEL B. ENZI, Wyoming, Chairman

JUDD GREGG, New Hampshire            EDWARD M. KENNEDY, Massachusetts
BILL FRIST, Tennessee                CHRISTOPHER J. DODD, Connecticut
LAMAR ALEXANDER, Tennessee           TOM HARKIN, Iowa
RICHARD BURR, North Carolina         BARBARA A. MIKULSKI, Maryland
JOHNNY ISAKSON, Georgia              JAMES M. JEFFORDS (I), Vermont
MIKE DeWINE, Ohio                    JEFF BINGAMAN, New Mexico
JOHN ENSIGN, Nevada                  PATTY MURRAY, Washington
ORRIN G. HATCH, Utah                 JACK REED, Rhode Island
JEFF SESSIONS, Alabama               HILLARY RODHAM CLINTON, New York
PAT ROBERTS, Kansas

               Katherine Brunett McGuire, Staff Director

      J. Michael Myers, Minority Staff Director and Chief Counsel

                                  (ii)

  




                            C O N T E N T S

                               __________

                               STATEMENTS

                        WEDNESDAY, APRIL 6, 2005

                                                                   Page
Enzi, Hon. Michael B., Chairman, Committee on Health, Edcation, 
  Labor, and Pensions, opening statement.........................     1
Kennedy, Hon. Edward M., a U.S. Senator from the State of 
  Massachusetts, opening statement...............................     2
Turnbull, Rud, Co-Director, University of Kansas Beach Center on 
  Disability, Lawrence, KS; James L. Bernat, M.D., Professor of 
  Medicine, Dartmouth Medical School, Hanover, NH, on behalf of 
  the American Academy of Neurology; Deborah L. Warden, M.D., 
  National Director, Defense and Veterans Head Injury Program, 
  Washington, DC; and J. Donald Schumacher, President and Chief, 
  Executive Officer, National Hospice and Palliative Care 
  Organization, Alexandria, VA...................................     6
    Prepared statements of:
        Mr. Turnbull.............................................     9
        Dr. Bernat...............................................    15
        Dr. Warden...............................................    19
        Mr. Schumacher...........................................    24

                          ADDITIONAL MATERIAL

Statements, articles, publications, letters, etc.:
    Response to Question of Senator Enzi by J. Donald Schumacher.    41
    Response to Question of Senator Enzi by Deborah L. Warden, 
      M.D........................................................    42
    Response to Questions of Senator Hatch by James L. Bernat, 
      M.D........................................................    43
    Response to Questions of Senator Hatch by H. Rutherford 
      Turnbull, III..............................................    44

                                 (iii)

  

 
             HEALTH CARE PROVIDED TO NON-AMBULATORY PERSONS

                              ----------                              


                        WEDNESDAY, APRIL 6, 2005

                                       U.S. Senate,
       Committee on Health, Education, Labor, and Pensions,
                                                    Washington, DC.
    The committee met, pursuant to notice, at 9:32 a.m., in 
Room 562, Dirksen Senate Office Building, Hon. Mike Enzi, 
chairman of the committee, presiding.
    Present: Senators Enzi, Burr, and Kennedy.

                   Opening Statement of Chairman Enzi

    The Chairman. Good morning. I will call to order this 
hearing. Welcome to the hearing of the Committee on Health, 
Education, Labor, and Pensions. Today, the committee will be 
exploring some of the key issues involved in the care of those 
unable to express their wishes for their health care treatment.
    Before I continue with my opening statement, I want to 
clarify an important point about today's hearing. This hearing 
is about more than Terri Schiavo. Terri Schiavo very 
dramatically brought these issues to the attention of the 
Nation, and their importance didn't fade or diminish with her 
loss. Because there are so many individuals in similar 
situations, we need to increase our focus on the challenge of 
providing appropriate health care to millions of people who 
require additional health care services, especially those who 
are so severely injured that they cannot even communicate their 
wishes to their caregivers.
    To address these issues, we have assembled a panel of 
experts to talk about the difficulties of providing health care 
services to individuals who cannot express their health care 
wishes and to inform us and the American public on the critical 
health care, legal, and planning issues that we, as a nation, 
have been discussing so intensely for the past few weeks.
    The national dialogue that began with Terri Schiavo must 
continue so that many more American families will discuss and 
document their beliefs and desires about what health care 
measures they would want to receive following a catastrophic 
injury or illness. Families need to discuss these difficult 
issues now, before their loved ones are unable to express their 
particular wishes.
    Beyond advance directives and living wills, Americans 
should also consider long-range financial planning to deal with 
the costs of long-term care. According to the National 
Association of Insurance Commissioners, the cost of a nursing 
home ranges from $30,000 to $80,000 per year, and even home and 
community-based care can cost up to $50,000 a year. Regardless 
of where this care is provided, these costs add up. Thus, there 
is a need for every family to discuss the critical financial 
issues surrounding long-term care.
    I also hope this hearing provides us with an additional 
opportunity to examine disabilities due to catastrophic brain 
injuries. It is easier to resuscitate the heart than it is to 
resuscitate the brain after a traumatic event, so more and more 
people are living with the effects of severe brain injuries. It 
can be challenging for doctors to make an appropriate diagnosis 
when a simple diagnostic test will not provide an easy answer.
    There is so much that we still do not know about the brain 
and how it functions. We need a better understanding of the 
state of art of diagnosing brain injuries and how much more we 
need to do to find some of the elusive answers to our questions 
about the human brain. We also need to understand the state of 
potential rehabilitation efforts and therapies for individuals 
who have acquired a brain injury or other related disability.
    It is appropriate for Congress to explore these issues in 
settings like this. We as a nation all need to focus on what 
actions are appropriate under the tragic circumstances in which 
someone cannot direct his or her own health care. From advanced 
medical directives to living wills to financial planning, 
Americans need to know how to prepare themselves for the 
unthinkable, and we need to continue to make advances in the 
diagnosis and treatment of the significantly disabled so they 
can benefit from the tens of billions we spend on medical 
research each year.
    As is the tradition of this committee, only the chairman 
and ranking members are recognized to deliver opening 
statements. I ask unanimous consent that opening statements 
from all colleagues on the committee can be entered into the 
record. Without objection, so ordered.
    But before I recognize Senator Kennedy for his opening 
statement, I want to thank him for the comments he made a 
couple of weeks ago regarding Terri Schiavo. Senator, you said 
that you would do all you could to see that any action Congress 
takes is constructive and free from partisan politics. I want 
to thank you and your staff for working in that spirit with me 
and my staff. Our teams consulted closely as we identified our 
witnesses to put together this morning. I think our exploration 
of many of the issues raised over the past few weeks will 
benefit from this collaboration. I look forward to working with 
you and the rest of our colleagues on this committee as we 
explore the impact of these catastrophic injuries and the 
challenges that these injuries impose on the severely injured 
and their families as they struggle to make health care 
decisions.
    Senator Kennedy?

                  Opening Statement of Senator Kennedy

    Senator Kennedy. Thank you very much, Mr. Chairman. I want 
to commend you for holding this important hearing on the issues 
that we all must face as we consider our own lives and the 
lives of those that we love. This is a complex issue, as our 
chairman has pointed out, and all of us on this side of the 
aisle appreciate the extremely responsible way in which you 
have approached this hearing.
    There are few things in life that tear at our hearts more 
than the thought of a beloved mother or father, spouse or 
child, lying in a hospital bed after a serious injury or major 
illness. In those painful circumstances, we must face the 
terrible choice of continuing treatment or allowing a loved one 
to pass away in dignity. There are few moments that test our 
faith, our humanity, and our love more than that choice. The 
decision is made more difficult when patients have not left 
clear instructions on what they want.
    All of us who followed the tragedy of Terri Schiavo have 
asked ourselves what we would do if she were part of our 
family. In addressing this question honestly, we may come to 
different judgments. One thing is sure, that families facing 
these painful decisions deserve better than political theatrics 
from the United States Congress, and Republican leaders abused 
their positions of power to play politics with Terri Schiavo's 
life. These are solemn family decisions. They are times for 
deep prayer, wise counsel, not craven politics.
    Yet Republicans sought to legislate based on a 5-year-old 
videotape. They ignored the detailed findings of the 
neurologist who had extensively examined Mrs. Schiavo in 
person, numerous experts, five different courts, and three 
legal guardians, one of whom was appointed by Governor Jeb Bush 
himself. And House Republican Leader Tom DeLay has even 
threatened the judges who acted in this case, just as 
extremists were threatening their lives. That is reckless and 
irresponsible, and now the Senator from Texas has joined Tom 
DeLay's chorus in tearing down our independent judiciary. 
Apparently it is not enough for Republicans to rule the White 
House and Congress. They want power over the independent 
judiciary, too. Checks and balances so vital to our democracy 
are for them merely an inconvenience.
    We owe it to our citizens to approach this issue 
compassionately, thoughtfully, and responsibly. No injury is so 
profound or disability so severe that we should diminish the 
fundamental dignity of a human being.
    There are hundreds of families every day who face the same 
decision as the Schindlers and the Schiavos. In fact, in almost 
half of the cases of deaths in intensive care units involving 
decisions to end treatment, there is disagreement in the 
family. The role of Congress cannot be to intervene and 
interfere with their private lives in each and every case. 
Instead, our role in Congress should be to support families as 
they make the end-of-life decisions, and if there is a dispute, 
it should be settled by impartial judges, not by a show of 
hands in the U.S. Senate.
    There is much we can do, however, to support families in 
this situation and I look forward to hearing the ideas of our 
witnesses today.
    Of first importance is making certain that care is 
available for those with serious illness and disabilities so 
that they can be assured of treatment and rehabilitation. 
Families facing end-of-life decisions need to know that this is 
the case. Shamefully, in the same month that Congress 
intervened in the case of Terri Schiavo, the House of 
Representatives approved a budget that would deny care to 
thousands of Americans who, like Terri Schiavo, rely on 
Medicaid for their health and hope. Many of our colleagues who 
led the effort to intervene are also urging Congress to impose 
the arbitrary caps on the very kind of medical malpractice 
awards that sustained her life.
    Clearly, we need to reverse the life-threatening cuts in 
the President's budget and reject the arbitrary malpractice 
caps that jeopardize the most severely injured patients. We 
should also consider three additional steps.
    In the short term, we need to improve ethical guidelines to 
hospitals, doctors, families on end-of-life care. Medical 
progress is constantly expanding frontiers of medicine and 
sustaining lives. Our ethical guidelines must keep pace with 
these developments.
    We also know that endless additional anguish and heartbreak 
can be avoided if persons have shared clear and thoughtful 
instructions on their goals for medical care with those closest 
to them, if they have appointed a trusted person to speak for 
them, and if they have given their loved ones a chance to air 
their concerns.
    In addition, Congress must complete the long-awaited 
legislation to provide affordable health insurance to families 
with disabled children. Senator Grassley and I introduced the 
Family Opportunities Act 5 years ago. It has 60 cosponsors. Yet 
Congressional leadership has delayed its enactment into law. 
The bill would be a lifeline to families unable to afford 
health coverage for their disabled children, some of whom today 
actually are forced to give up custody of their disabled 
children so they can get health care. How many more families 
will be forced to give up custody of their disabled children 
before this Congress will act?
    Citizens with disability also need more realistic ways to 
lead independent lives at home and in the community, and I hope 
Congress can pass bipartisan legislation supporting new 
insurance strategy for them. A strategy enables Americans with 
disabilities to afford the service and support they need to 
lead the independent lives.
    Once again, I thank our chairman for holding this 
thoughtful hearing. I thank our witnesses for appearing before 
the committee this morning and I look forward to their 
testimony and working with our colleagues to enact appropriate 
ways to meet these basic challenges.
    The Chairman. Now we will hear from our first and only 
panel of witnesses. We will introduce the panelists all at 
once. They will give their statements, and then we will move to 
questions, and I will ask each of you to summarize. We are 
going to have some difficulties this morning with a vote that 
has been scheduled, so we will have to recess to be able to 
vote and come back. I ask everyone's indulgence for that.
    The first member of the panel is Rud Turnbull. Mr. Rud 
Turnbull is a researcher, teacher, consultant, and advocate. He 
is the father of a 37-year-old man, Jay, who has several 
disabilities, a daughter, Amy, who administers programs on 
behalf of individuals that are homeless, many of whom have 
emotional, mental disabilities, and Kate, an actress in New 
York City. Mr. Turnbull is the author of 16 books, 49 
monographs and technical reports, 131 articles, and 68 
chapters.
    He has served as a Chairman of the Board of Trustees of the 
Judge David Baselon Center for Mental Health Law, President of 
the American Association of Mental Retardation, Chairman of the 
American Bar Association Commission on Disability Law, 
Secretary of the ARC of the United States, and Treasurer of the 
Association for Persons with Severe Disabilities. His peers in 
the field of developmental disabilities and special education 
have described him as one of 36 people who in the 20th century 
changed the course of history in intellectual disabilities, and 
during the 19th and 20th century as one of the leaders of the 
field of special education.
    He has testified before Congress on nearly a dozen 
occasions, served as counsel to committees of the North 
Carolina General Assembly, and been a Joseph P. Kennedy, Jr. 
Foundation Public Policy Fellow attached to the U.S. Senate 
Subcommittee on the Handicapped, where in 1987 and 1988 he did 
the staff work that led to the enactment of the Assistive 
Technology Act.
    Mr. Turnbull will discuss the appropriate legal advocacy 
for individuals with disabilities, including advocacy related 
to financial well-being of the family, which may include the 
purchase of long-term care insurance or other insurance 
products.
    The second member of our panel, Dr. James Bernat, hails 
from New Hampshire. Dr. Bernat, a medical doctor, has been a 
professor of neurology at Dartmouth Medical School and staff 
neurologist at the Dartmouth Hitchcock Medical Center in 
Lebanon, NH, since 1977. Currently, he holds hospital 
appointments as a staff neurologist, Dartmouth Hitchcock 
Clinic, attending neurologist, Dartmouth Hitchcock Medical 
Clinic, and consultant neurologist at the V.A. Medical Center.
    Prior to 1977, Dr. Bernat was the Chief of Neurology 
Section at the V.A. Medical Center and Co-Director for the V.A. 
Northeast Regional Center for Clinical Ethics, and Co-Director, 
Senior Scholar for the V.A. National Center for Clinical 
Ethics. He was also Assistant Dean for Clinical Education from 
1996 to 1999 for the Dartmouth Medical School. Dr. Bernat has 
been published in 100 journals, ranging from the Journal of 
Neurology, Neurosurgery, and Psychiatry, to JAMA, to the 
Journal of Clinical Ethics and quoted for his expertise in the 
New York Times.
    The doctor will discuss the difficulties in diagnosing 
brain injuries and any advancements related to the care of 
individuals sustaining brain injuries.
    Dr. Deborah Warden is the National Director of Defense and 
Veterans Head Injury Program and Associate Professor of 
Neurology and Psychiatry at the Uniformed Services University 
of Health Sciences. After completing residencies in neurology 
and psychiatry at the University of Rochester and Georgetown 
University, Dr. Warden directed the home program component of 
the randomized trial of cognitive rehabilitation at the Walter 
Reed Army Medical Center. Out of this study grew the Defense 
and Veterans Head Injury Program, an eight-center military, 
veterans', and civilian partner brain injury disease management 
system that delivers state-of-the-art clinical care, conducts 
clinical research, and provides focused education on brain 
surgery. She has lectured and published widely on 
neurobehavioral aspects of traumatic brain injury.
    Dr. Warden will discuss treatment and rehabilitation 
options and services for individuals who have sustained a brain 
injury and any advancement related to the care of individuals 
sustaining brain injuries.
    Dr. J. Donald Schumacher, a doctor of psychology, has been 
the President and CEO of the National Hospice and Palliative 
Care Organization since October 2002 and President of the 
National Hospice Foundation since June 2003. He also serves as 
President of the Foundation for Hospices in Sub-Saharan Africa.
    Dr. Schumacher graduated from Massachusetts School of 
Professional Psychology in June of 1986. His doctoral 
dissertation was on the psychological care of the terminally 
ill patient. Prior to attending Massachusetts School for 
Professional Psychology, Dr. Schumacher graduated from the 
State University of New York at Buffalo with his Master's 
degree in counseling psychology. From 1978 to 1989, he was the 
CEO of Hospice West in Waltham, Massachusetts. He served as the 
President and Chief Executive Officer of the Center for Hospice 
and Palliative Care in Buffalo, New York, from 1989 to 2002. 
Dr. Schumacher currently serves on the Board of the National 
Health Council. He has lectured nationally on the psychological 
care of the terminally ill patient and the expansion of hospice 
care both nationally and internationally. Dr. Schumacher is 
licensed as a clinical psychologist in both Massachusetts and 
New York State.
    Dr. Schumacher will discuss the importance of discussing 
end-of-life issues with family members and what steps people 
should take to plan ahead.
    We will now hear from our first witness, Mr. Turnbull.

 STATEMENTS OF RUD TURNBULL, CO-DIRECTOR, UNIVERSITY OF KANSAS 
  BEACH CENTER ON DISABILITY, LAWRENCE, KS; JAMES L. BERNAT, 
M.D., PROFESSOR OF MEDICINE, DARTMOUTH MEDICAL SCHOOL, HANOVER, 
NH, ON BEHALF OF THE AMERICAN ACADEMY OF NEUROLOGY; DEBORAH L. 
  WARDEN, M.D., NATIONAL DIRECTOR, DEFENSE AND VETERANS HEAD 
   INJURY PROGRAM, WASHINGTON, DC; AND J. DONALD SCHUMACHER, 
  PRESIDENT AND CHIEF EXECUTIVE OFFICER, NATIONAL HOSPICE AND 
          PALLIATIVE CARE ORGANIZATION, ALEXANDRIA, VA

    Mr. Turnbull. Senator Enzi, Senator Kennedy, thank you very 
much. My name is Rud Turnbull. I am the father of Jay Turnbull, 
a 37-year-old man who has mental retardation, autism, rapid 
cycling bipolar condition, an irregular heartbeat, and 
challenging behaviors. At this rate, he is going to have every 
diagnosis in the DSM.
    I am also a professor of special education at the 
University of Kansas, former Chairman of the Department of 
Special Education, co-founder and Co-Director of the Beach 
Center on Disability, which studies the effect of public policy 
on families, and former courtesy professor of law at the 
University of Kansas. Thank you for the opportunity to give you 
some of my views and speak for some people with significant 
intellectual disability who have become my friends and to give 
you a precipe of their perspectives, as I understand them, 
about Federal policy.
    Senator Enzi, a few moments ago, you talked about people 
who were unable to express their wishes. That phraseology goes 
right to the heart of the matter in these debates, which has to 
do with self-determination.
    If either of you were to ask Jay Turnbull where he wants to 
live, work, with whom he wants to associate, how he wants to be 
in his community, what church he wants to attend, he would tell 
you in a word or two or by some behavior. If you, on the other 
hand, were to ask him where his deceased grandparents are, he 
would tell you they are in heaven with Baby Jesus. His answers 
to those two questions would be genuine, complete, and 
credible.
    My point is simply this. Jay, like many people with 
significant intellectual disability, is situationally 
competent. He knows about the life he leads today. He chooses 
the life he leads today. But he has very little knowledge about 
the medical procedures that he must undergo and he has very 
limited capacity for the abstract. For him, death is the 
permanent absence of a person whom he loves from his life and 
the permanent presence of that person with God.
    Having, I hope, helped you understand this business about 
competency, let me talk about the historical context in which 
you all are operating. I barely have to remind either of you. 
People with disabilities have always been subject to 
discrimination. That is one of the reasons Congress has enacted 
laws granting rights in housing, education, employment, and now 
the question has to do with discrimination in health care and 
where do we turn for answers?
    Some people will turn to Hippocrates, who asked the 
question, which children should be raised? It is interesting. 
Plato answered that by admonishing us not to be taken in by the 
lifeless phantom that is not worth wearying, and Aristotle 
admonished the fathers to kill their severely deformed and 
crippled children.
    One would have thought that we would be, in our enlightened 
age, beyond debates about which life is worth living, but that 
is not the case. Today, there is still a debate. What are the 
essential elements of humanness? That debate frightens me and I 
suggest it should frighten all of us, because the slippery 
slope is slick and it awaits all of us.
    One reason Congress enacted the Americans with Disabilities 
Act was to respond to that potential and that reality of 
discrimination. In the ADA, Congress declared that disability 
is a natural part of the human experience and should not 
diminish the rights of people with disabilities simply because 
they have a disability. Congress also declared that the 
national policy is to advance the self-determination of people 
with disabilities, assure their equal protection under the law, 
and promote their independent living.
    The implicit message of this language about the natural 
condition is that each one of us at some point in our lives, 
should we live long enough, may have a disability that would 
disable us from making a choice such as we would want to make 
had we not had the disability. So the question, it seems to me, 
at this point is what role does Congress have to play, and that 
role is played in the middle of a public debate that asserts in 
part that I would not want to live like that. I would not want 
to be a person who suffers from mental retardation or a 
disability so much that I would continue living.
    Let me assure you, Jay Turnbull does not suffer from mental 
retardation. If he suffers from anything, it is the failure of 
society and law to accommodate to him according to how he, like 
the rest of us, would want to be accommodated to.
    Congress has responded. You in 1984 enacted the Child Abuse 
Prevention and Treatment Act. In that act, you laid out 
policies that I think should guide us now. First, 
discrimination on the basis of disability is wrong, no matter 
how severe the disability, no matter its cause.
    Second, the disability should never be the basis for making 
a decision about health care.
    Third, what medical care is available, it should always be 
provided.
    Fourth, at the edges of life, there is always a presumption 
in favor of life.
    And fifth, that presumption may be rebutted when the person 
is in a coma, that care would be futile, or the pain would be 
so great--and by the way, this word ``coma'' bothers me because 
it talks about persistent vegetative state. I would hope we 
could find another word than ``vegetative.''
    So what issues should Congress address? Well, of course, 
the States have the primary responsibility in protection, but 
this is a civil rights matter and it is a Federal civil rights 
matter and, therefore, Congressional consideration is 
appropriate. If the Congress were to choose to move forward, I 
suggest there are three kinds of cases that it should address.
    First, the person is not near death but most certainly will 
die if the medical care, hydration, and nutrition are 
withdrawn.
    Second, there is no clear advance directive or other 
reliable evidence of what the person would want.
    And third, there is an irreconcilable conflict among the 
family and guardian members and that conflict cannot be 
resolved.
    Now, if Congress were to act, here are, I think, are some 
of the issues that we have to take up. First, expedited appeals 
and hearings. Second, standing to sue. The burden of proof. The 
standard of proof. The criteria for third-party decision 
making. The use of independent medical judgment. And then the 
grounds for overruling a State court decision.
    I believe, and I think most of us believe, that the 
government that compels a life to be lived is a government that 
is ethically obliged to support that life to be lived well. 
Civil rights are the necessary precursors for rights and 
entitlements of the service system, and that is why I want to 
talk about preserving Medicaid, about not reducing the 
benefits, about not tightening the eligibility. Congress can 
give the States a great deal of leeway without pulling the guts 
out of Medicaid. There are other programs that Jay and his 
peers rely on--housing, Section 8 housing, rehab, Medicaid, 
Medicare, SSI, SSDI, IDEA, ADA, protection and advocacy. We 
have to keep those going.
    Senator Kennedy just a moment ago talked about the Family 
Opportunities Act. It and MICASA need to be enacted. If not 
this year, when?
    In summary, Jay looks to you to preserve his civil rights, 
to maintain and to expand the existing programs, to rely upon 
principles for decision making that have been with us since 
1984, and to assure a proper Federal role in these matters.
    I ask my testimony be entered into the record in full, the 
written testimony, and I thank you for the opportunity to be 
with you.
    The Chairman. Without objection.
    [The prepared statement of Mr. Turnbull follows:]

           Prepared Statement of H. Rutherford Turnbull, III

    Senator Enzi, Senator Kennedy, Senator Roberts, Senator Harkin, and 
members of the committee. I am Rud Turnbull, the father of Jay 
Turnbull, a 37-year-old man with significant mental retardation 
(measured IQ of approximately 40, mental age of approximately 6), rapid 
cycling bi-polar illness, autism, an irregular heart beat, and 
frequently challenging behaviors.
    At the University of Kansas, I am a professor of special education, 
former chairman of the department of special education, co-founder and 
co-director of the Beach Center on Disability (a research center 
focused on the effects of policy on families who have children with 
disabilities), and former courtesy full professor of law. Before coming 
to the University of Kansas in late-1980, I was professor of public law 
and government at the University of North Carolina at Chapel Hill, 
beginning in 1969.
    Here and today, I speak for no organizations. Instead, I have been 
asked and am pleased to share my perspectives as a father and friend of 
many people with intellectual and associated disabilities and their 
families, and to provide a precis of what I have learned about policy 
from their perspectives.
    There are literally millions of people with intellectual and 
associated disabilities. So whatever you do on this topic we discuss 
today will change their lives dramatically. But you will also affect 
those who will acquire a disability as they age. That population 
includes nearly every one of us, should we live long enough.
    After Jay was born and his disability confirmed, I responded by 
shaping my life to his and his peers and their families. I have learned 
a great deal about their lives by being an active participant in 
developing services locally; advocating at the local, State, and 
Federal governmental levels for my son and his peers and their 
families; researching and writing about them in over 250 publications; 
and carrying out research, training, and technical assistance on their 
behalf, in nearly every State, for nearly 35 years.
    Although I do not personally know these millions of people whom you 
can affect, I know how they have experienced discrimination and 
sometimes been surprisingly successful in overcoming it, and I have a 
solid sense about their aspirations for how they want to live.
    Many of them are in the same position as my son: graduates of 
special education under the Individuals with Disabilities Education 
Act; beneficiaries of the Home and Community Based Services Waiver 
under Medicaid; and recipients of SSDI or SSI; supported employment 
services under the Rehabilitation Act; and rent subsidies under Section 
8 of the Housing Act. Some of them live according to their choices; my 
son does, because of these programs.
    Many, however, live according to how policies and service systems 
find it convenient for them to live. Unlike Jay, they are not supported 
to be self-determined.
    Allow me to talk about self-determination, for it is at the heart 
of debates about health-care decision making. And allow me to give you 
the example I know best, my son.
    If you were to ask Jay where he wants to live and work, who his 
friends are, and how he wants to be a fully participating member of his 
community, he would tell you, by words, behavior, or both, and you 
would have no doubt about the authenticity of his answer.
    If you ask him where his deceased grandparents are, he would tell 
you, ``In Heaven with Baby Jesus.'' Here, too, you would know his 
answer to be utterly genuine and complete.
    I tell you this because I want you to understand that Jay, like 
many people with mental retardation or associated intellectual 
disabilities, is ``situationally competent.'' Whether he has sufficient 
ability to be self-determined depends wholly on the situation he faces 
and on who asks him, how much he trusts that person, and how familiar 
he is with the questions. That can be true of his peers, too.
    Jay knows about his life as he leads it, day by day. He has, 
however, little knowledge about the various medical procedures that he 
must have, especially those involving surgery. And he has no concept 
about death.
    For Jay, death is the permanent absence of a loved one from him and 
the permanent presence of that person with God.
    This snapshot of Jay is important to you because you need to 
understand the world that Jay and his peers live in. You need to 
understand that people with intellectual and associated disabilities 
have always been subjected to discrimination. Often, they have been put 
to death or allowed to die when they might have been kept alive. The 
discrimination that they have experienced in education, employment, and 
housing are matters that you have addressed by various laws. More to 
the point today is the discrimination in health care that they have 
experienced.
    The roots of that discrimination are ancient. They originate in the 
debates of the Greek philosophers, Hippocrates, Socrates, Plato, and 
Aristotle.
    Hippocrates posed the question, ``Which children should be 
raised?''
    Plato answered by writing that a State's ``medical and judicial 
provision'' will ``leave the unhealthy to die, and those whose 
psychological constitution is incurably corrupt, it will put to 
death.'' He added, ``. . . we must look at our offspring from every 
angle to make sure we are not taken in by a lifeless phantom not worth 
the rearing.''
    Aristotle agreed: ``With regard to the choice between abandoning or 
rearing an infant, let there be a law that no crippled child be 
raised.''
    And the pre-Christian Romans' Twelve Tables, their equivalent of 
our Federal constitution, admonished the head of the family to ``kill 
quickly . . . a dreadfully deformed child.''
    One would have thought our more enlightened age would have settled 
the question about which individuals should be treated so that they 
will live.
    Yet, even nowadays the debate rages: what are the indispensable 
elements of being, the sine qua non of human-ness. Those debates 
frighten me, and they should alarm you, too. The slippery slope is 
slick and awaits us all.
    In our own country, Justice Thurgood Marshall, in his opinion in 
City of Cleburne v. Cleburne Living Center (473 U.S. 432 (1985)), which 
struck down exclusionary zoning that targeted only people with mental 
retardation, characterized this country's discrimination against people 
with mental retardation as ``grotesque.''
    That case and others from the Supreme Court, as well as our own 
laws, affirm that the stigma attached to disability of all kinds is 
simply abhorrent and has no role in public policy.
    To remedy the discrimination as a matter of Federal law, Congress 
enacted the Americans with Disabilities Act, 15 years ago. That bi-
partisan law, bravely sponsored by Senators Harkin, Hatch, Kennedy, and 
my own former Senator, Bob Dole, and powerfully supported by President 
Bush and many senior-level members of his Administration, declared that
     disability is a natural part of the human experience and 
in no way diminishes the right of individuals to participate in or 
contribute to society, and
     the Nation's policy for people with disabilities is to 
assure their equal protection under the law, advance their self-
determination, and promote their independent living.
    The implicit message of ADA's ``natural experience'' language is 
that each of us at some time may have a disability, especially as we 
age, but that we should not therefore lose our rights, including our 
rights to choose what happens to us, whether in health-care decision 
making or other aspects of life.
    Among the many questions before you nowadays is this simple one: 
What role, if any, does Congress have in responding to
     theories that people with disabilities are not human 
enough to have rights, and, if they pass some test of being human, 
still have no rights, much less the right to live,
     a sense among the some Americans that ``I would not want 
to live like THAT!,'' that a person with a disability ``suffers'' from 
the disability when, often, it is not the disability that causes the 
suffering but our social and legal refusal to support the person,
     a sense among some in the public and media that living as 
a person with a disability is such an undesirable condition that death 
itself is preferable to life,
     public perceptions that people with disabilities are 
useless consumers of public and private resources,
     cost-containment pressures and rationing criteria within 
the health-care and insurance industries, and
     public opinion that too often is not ashamed to say that, 
when it comes to protecting and allotting health-care resources to 
people with disabilities, they should, in the words of former Governor 
Lamm of Colorado, ``Just roll over and die.''
    So, as the first order of business, in any bill it enacts Congress 
should
     affirm and recommit itself to the ADA principles of self-
determination (in constitutional terms, liberty and autonomy), 
independent living, and equal protection, and
     proclaim in no uncertain terms that these policies are 
still the Nation's law for people with disabilities and that they apply 
to health-care and end of life decision making.
    Second, in that same bill, Congress should recognize that
     people with significant intellectual and other associated 
disabilities are situationally competent,
     their abilities vary according to type and severity, and 
in contexts and over time,
     they need and under the ADA have rights to be supported to 
be as self-determined as they can be at the times when they and their 
designated representatives must make choices, and
     the families of newborns, infants, children, and adults 
with disabilities are the core social units for them and for society 
itself, and that it is proper for the Nation to commit its resources to 
supporting those families.
    Third, Congress should recognize that there already are principles 
guiding health-care decision making and that these principles have 
garnered widespread consensus from healthcare providers and 
organizations representing people with disabilities and their 
professional caregivers.
    Those principles are the foundations for the regulations 
implementing the Child Abuse Prevention and Treatment Act (42 U.S.C. 
Sec. 5101; 45 CFR Part 84, Section 84.55). As one who helped draft the 
Principles some 20 years ago, I know them well, and I urge you to 
consider reviewing them and weighing their appropriateness for any 
policy you decide to enact.
    The Principles and regulations, taken as a whole, state that
     discrimination against any person with a disability, 
regardless of the nature or severity of the disability, is morally and 
legally indefensible,
     the rights of people with disabilities must be recognized 
at birth (and, I believe, at the other edge of their lives),
     when medical care is clearly beneficial, it must be 
provided,
     it is impermissible to take into account any anticipated 
or actual limited potential of a person or lack of resources,
     there is a presumption in favor of treatment at the edges 
of life,
     the presumption is rebuttable and it is permissible in law 
and ethics to withhold or withdraw medical or surgical procedures that 
are clearly futile and will only prolong the act of dying and when the 
person is in an irreversible coma or the treatment would be so painful 
as to render it unconscionable, and
     the person's disability itself must never be the basis for 
a decision to withhold treatment.
    Fourth, Congress should recognize that its actions will affect 
millions of people, not just those with disabilities but also children, 
the aged, and their families.
    Fifth, Congress should recognize that the primary responsibility 
for legislating health care and protecting against abuse and neglect in 
health care traditionally has resided in State legislature and State 
courts. However, given the significant Federal civil rights issues 
involved, it is appropriate for Congress to consider the extent of any 
Federal role. Later in my testimony I suggest principles for 
Congressional action.
    Sixth, Congress should recognize that end of life decision making, 
however much it may be guided by various legal instruments or other 
reliable expressions of self-determination, is a dynamic process, and 
that people's conditions change with prompt, state-of-the-art 
treatment, and so do their and their families', other designated 
representatives', and health/medical caregivers' judgments about how 
much to honor the previously executed instruments or expressions of 
autonomy.
    Seventh, Congress should acknowledge that any government that 
compels a life to be lived is ethically obliged to provide the person 
with a right to individually chosen and appropriate supports necessary 
to implement the ADA ``natural experience'' declaration and the ADA 
national policy aspirations. Civil rights are the necessary precursors 
to rights and entitlements within service-delivery systems.
    Eighth, Congress should not retreat from the laws that already 
commit our Nation to enhancing the quality of life of people with 
disabilities and their families. More than that, Congress should 
enhance existing rights and benefits and create new ones.
     Preserving Medicaid as an entitlement is absolutely 
necessary for people with disabilities. It is desirable for the Federal 
Government to give States greater flexibility in structuring their 
Medicaid programs, including by adding more self-determination and 
self-direction to the service system. But it would be devastating to 
present and future Medicaid beneficiaries for the Federal Government to 
tighten the present eligibility criteria and reduce the present 
benefits.
     Preserving the eligibility and funding for the programs 
that my son and millions of other people with disabilities rely on to 
live as full citizens, consistent with ADA, is also absolutely 
essential. These include Section 8 rental assistance, supported 
employment programs, SSDI and SSI, Medicare, the Developmental 
Disabilities Act and its family support provisions, the Federal 
respite-care assistance program, and the Protection and Advocacy 
Systems.
     Enacting the Family Opportunities Act and MICASA in order 
to strengthen families and assure greater self-determination for them 
and for people with disabilities is way overdue.
    Ninth, knowledge is a precursor to good decision-making, so 
Congress should authorize and enable a wide range of parent and family 
training and information centers, in both the disability and non-
disability arenas, to offer objective and current information about the 
legal instruments that individuals may execute and about the treatment 
options that the health-care and hospice systems can offer at the end 
of life.
    Lastly, there are various issues that Congress might well consider 
if it debates whether it is desirable to enact a law that allows for 
Federal intervention in end of life decision making.
    Among those issues are the cases in which Federal intervention is 
warranted. In my judgment, the cases would be ones in which
     the person is not near death but most certainly will die 
if the treatment, hydration, or nutrition is withheld, or
     there are no clear advance directives from the person or 
other reliable, at the clear and convincing level, expressions of the 
person's autonomy, or
     there is irreconcilable disagreement among family members 
concerning the decision to be made.
    If Congress does indeed debate a Federal role, it may well also 
consider such issues as
     expedited hearings and appeals,
     standing to sue,
     burden of proof,
     standard of proof,
     criteria for third-party decisions,
     utilization of independent medical judgments, and
     grounds for overturning a State court decision.
    For just a moment and in conclusion, please allow me to return to 
the beginning of my testimony, to my son Jay. He has two parents who 
agree among themselves about his care; two sisters and a brother-in-law 
who know him extremely well, love him devotedly, and have thought 
carefully about their and his lives and the decisions they will make 
for themselves and for him; and friends who also know him well and 
honor his self-determination. In Jay's case, the issue is not one of 
rights, but of going beyond rights.
    Rights and their associated principles and regulations direct us, 
but they cannot fully answer our questions about what to do for Jay and 
people with intellectual and other disabilities. So family, friends, 
and Jay himself invariably turn to those two elements that have added 
quality to his life--to trust, hard-earned over time, and compassion, 
generously shared and untainted by disability discrimination.
    William Faulkner told a family's story in his book, ``As I lay 
dying,'' and I want to borrow that phrase and say that, when the time 
comes that I lie dying, I will have confidence that Jay's family and 
friends will do for him what he most would want done for himself, if he 
could decide. His life--not his disability--gives them a warrant for 
action. And the ``them'' who will carry out that warrant are those whom 
he has trusted and who have made his life an intrinsic part of their 
own. Jay's most enduring social security is his circle of family and 
friends.
    But he and millions of others also look to you to preserve his 
civil rights under the Constitution, the ADA, and other laws; maintain 
existing rights and entitlements and expand, not shrink, them; rely on 
principles for decision making that have wide support and that have 
protected many newborns and infants with disabilities; and assure an 
appropriate Federal role in reviewing state-based decisions.
    Thank you for the opportunity to testify and for your careful and 
deliberate consideration about how to proceed on behalf of all of the 
present and future ``Jays'' of our country.
                               H. Rutherford Turnbull, III,
                                                  Lawrence, Kansas.

                              Bibliography

``The Persistent Vegetative State and Related States'' from James L. 
Bernat: Ethical Issues in Neurology, 2nd ed. Boston: Butterworth-
Heinemann, 2002, pp. 283-305.

``Questions Remaining about the Minimally Conscious State'' by James L. 
Bernat: Neurology 2002; 58:337-338.

American Academy of Neurology Quality Standards Subcommittee. Practice 
Parameters: Assessment and Management of Patients in the Persistent 
Vegetative State (Summary Statement). Neurology 1995; 45:1015-1018.

American Academy of Neurology. Position of the American Academy of 
Neurology on Certain Aspects of the Care and Management of the 
Persistent Vegetative State Patient. Neurology 1989;39:125-126.

The Multi-Society Task Force on PVS. Medical Aspects of the Persistent 
Vegetative State. New England Journal of Medicine 1994; 330:1499-1508, 
1572-1579.

Joseph T. Giacino et al., The Minimally Conscious State: Definition and 
Diagnostic Criteria. Neurology 2002; 58:349-353.

    The Chairman. In fact, all complete testimonies will be a 
part of the record, and we will even have the record open for a 
while so that additional questions from other members of the 
panel can be submitted. We hope that you will answer those 
questions and expand on any remarks based on anything else that 
was said during the hearings. Thank you.
    Dr. Bernat?
    Dr. Bernat. Good morning. Mr. Chairman, I thank you and 
Senator Kennedy for holding this hearing and for inviting me on 
behalf of the American Academy of Neurology to testify about 
the medical, scientific, and ethical issues involved in the 
diagnosis, treatment, and decision making for patients with 
disorders of consciousness from severe brain damage.
    The American Academy of Neurology is the principal 
scientific, clinical, educational, and policy organization for 
North American neurology, representing over 18,000 neurologists 
and related clinicians and scientists. The Academy has a long 
and distinguished concern for optimizing the care of patients 
with disorders of consciousness.
    Although my comments today will be scientific and 
conceptual, I want to emphasize that I am mindful of the 
profound human tragedy of the patients I describe. The 
objectivity of my comments should not be construed as implying 
any lack of compassion for their tragic plight or for the 
unspeakable suffering endured by their families.
    In my limited time, I wish to briefly clarify the medical 
syndromes causing disorders of consciousness. In my written 
testimony, I have provided further detailed information 
regarding diagnosis, treatment, and elements of clinical 
decision making for these patients. I have also included 
practice guidelines from the American Academy of Neurology.
    Human consciousness has two clinical dimensions: First, 
wakefulness, served by the brain stem ascending reticular 
activating system and its connections, and the second dimension 
is awareness of self and environment, served by the thalamus, 
the cerebral cortex, and their connections. Coma is an eyes-
closed form of pathological unconsciousness that is 
characterized by neither wakefulness or awareness.
    The vegetative state is a disorder featuring the ironic 
combination of wakefulness, but absent awareness, caused by 
damage to the thalamus, the cerebral cortex, or the connections 
between them. Vegetative state patients have intact sleep-wake 
cycles. Their eyes are open when awake and closed when asleep. 
They breathe, blink, move their eyes, and make noises, although 
no words, and show reflex responses. But to the fullest extent 
testable, they have no awareness of themselves or of their 
environment. When this state has been present for at least a 
month, it has been called the persistent vegetative state, or 
PVS.
    Another state, recently called the minimally conscious 
state, is a disorder of limited responsiveness in which 
patients retain awareness, but in which their responses are so 
deficient that evidence of their awareness may be difficult to 
detect. The most common causes of both PVS and the minimally 
conscious state are head trauma, brain damage from lack of 
oxygen during cardiac arrest, and stroke.
    I want to emphasize the biological limitation to our 
ability as clinicians to know the awareness of another person. 
Of course, we cannot get inside another person's mind and 
experience what they experience. Therefore, we can know their 
level of awareness only by inference. We interact and stimulate 
them and we study their responses. We infer whether they are 
aware by analyzing the quality of their responses and judge if 
a response they make is one that could be made only by an aware 
person. Responses produced by reflexes or so-called stereotyped 
responses don't count as awareness because they are integrated 
at a subconscious level.
    Physicians diagnosing persistent vegetative state have an 
important duty, and that duty is to show the complete absence 
of any evidence of awareness. The testing of the patient should 
include observing the patient, interacting with the patient 
during a neurological examination, talking to nursing 
caregivers and family members, examining laboratory tests such 
as EEGs and neuroimaging studies such as CT scans or brain 
MRIs.
    The examination should be directed toward eliciting any 
sign of awareness. We talk to patients. We see if they can 
respond appropriately to commands. Can they make eye contact, 
follow a moving object with their eyes consistently and 
intently, reach for an object, react to emotional stimuli, such 
as seeing a photograph of a loved one or talking about a loved 
one. The examination is long, tedious, repetitive, and 
thorough. Because random response might be interpreted as 
showing awareness, we test to see if it is reproducible. We 
interview nursing staff and family members to see if they have 
observed any responses that they believe prove the patient has 
awareness. If so, we ask them to demonstrate it to us.
    Only in the utter absence of evidence of awareness should 
we issue the diagnosis of PVS. EEGs commonly show diffuse, 
profound abnormalities. Neuroimaging studies in such patients 
show shrinkage of the brain, particularly if the illness or the 
injury was much earlier.
    The level of treatment we give patients is based on their 
prior stated wishes in light of their prognosis. We 
aggressively support and treat patients who would have wanted 
that level of treatment and cease treatment when patients have 
indicated they would not want to be maintained on life 
sustaining treatment in their current condition. If the patient 
has left no clear directives, we seek advice from family 
members and primary care physicians about their understanding 
of the patient's preferences for treatment in light of their 
diagnosis and prognosis.
    It is the responsibility of the medical team and the family 
to fulfill the patient's wishes for treatment. We do everything 
possible to achieve that goal.
    During the question and answer time, I hope we can further 
discuss the difficult issues of medical treatment, the complex 
ethical issues in medical decision making on these tragic 
patients, the importance of clear and compassionate 
communication with families, and some of the innovative 
scientific investigations that are now being performed to 
better understand their illnesses. Thank you very much.
    The Chairman. Thank you very much.
    [The prepared statement of Dr. Bernat follows:]

              Prepared Statement of James L. Bernat, M.D.

    Good morning ladies and gentlemen. Thank you, Senator Gregg, for 
the kind introduction. I thank Senators Enzi and Kennedy for inviting 
me on behalf of the American Academy of Neurology to testify about the 
medical, scientific, and ethical issues involved in the diagnosis, 
treatment, and decision making for patients with disorders of 
consciousness resulting from severe brain damage.
    The American Academy of Neurology is the principal scientific, 
clinical, educational, and policy organization for North American 
neurology, representing over 18,000 neurologists and related clinicians 
and scientists. The Academy has a long and distinguished concern for 
optimizing the care of patients with disorders of consciousness.
    Although my comments today will be scientific and conceptual, I 
want to emphasize that I am mindful of the profound human tragedy of 
the patients I describe. The objectivity of my comments should not be 
construed as implying any lack of compassion for their tragic plight or 
for the unspeakable suffering endured by their families.
    In my limited time, I wish to briefly clarify the medical syndromes 
causing disorders of consciousness. In my written testimony I have 
provided further detailed information regarding diagnosis, treatment, 
and the elements of clinical decision-making on these unfortunate 
patients. I have also included practice guidelines from the American 
Academy of Neurology.
    Human consciousness has two clinical dimensions: wakefulness, 
served by the brain stem ascending reticular activating system (ARAS) 
and its connections; and awareness of self and environment, served by 
the thalamus, the cerebral cortex, and their connections. Coma is an 
eyes-closed state of pathological unconsciousness from which subjects 
cannot be aroused to wakefulness, caused by a disorder of the brainstem 
ARAS. The vegetative state is a disorder featuring the ironic 
combination of wakefulness but absent awareness, caused by damage to 
the thalamus, the cerebral cortex, and their connections. Vegetative 
state patients have sleep-wake cycles. Their eyes are open when awake 
and closed when asleep. They breathe, blink, move their eyes, may make 
noises (though no words), and show reflex responses. But to the fullest 
extent testable, they have no awareness of themselves or their 
environment. When the vegetative state has been present for at least a 
month it is called the persistent vegetative state (PVS). The minimally 
conscious state (MCS) is a disorder of limited responsiveness in which 
patients retain awareness but their responses are so deficient that the 
evidence of their awareness may be difficult to detect. The most common 
causes of PVS and MCS are head trauma, brain damage from lack of oxygen 
during cardiac arrest, and stroke.
    The vegetative state usually is classified as a state of 
unconsciousness, but the terminology is ambiguous because, although PVS 
patients are unaware, they are awake. Because awareness is the most 
relevant component of consciousness, the loss of awareness counts as 
unconsciousness despite their open eyes.
    There is a biological limitation to our ability to know the 
awareness of another person. We cannot get inside their minds and 
experience what they experience. Therefore, we can know their awareness 
only by inference: we interact and stimulate them and study their 
responses. We infer whether they are aware by analyzing the quality of 
their responses and judge if a response is such that could be made only 
by an aware person. Responses produced by reflexes or so-called 
stereotyped responses do not count because they are integrated at a 
purely subcortical level.
    Physicians diagnosing PVS have the duty to show the complete 
absence of any evidence of awareness. Testing should include observing 
the patient, interacting with the patient during a neurological 
examination, talking to nursing caregivers and family members, and 
examining laboratory tests such as EEGs and CT scans or MRIs. The 
examination should be directed toward eliciting any sign of awareness. 
We talk to patients to see if they respond appropriately to commands, 
make clear eye contact, follow a moving object with their eyes 
consistently and intently, react to emotional stimuli such as seeing a 
photograph of a loved one or talking about a loved one. The examination 
is long, tedious, repetitive, and thorough. Because a random response 
might be interpreted as showing awareness, we test to see if it is 
reproducible. We interview nursing staff and family members to ask if 
they have observed any responses that they believe prove the patient is 
aware. If so, we ask them to demonstrate it to us. Only in the utter 
absence of evidence of awareness should we issue the diagnosis of PVS. 
EEGs commonly show diffuse, profound abnormalities and neuroimaging 
studies show brain atrophy if the injury or illness was many months or 
years earlier. Newer technologies such as brain PET scanning and 
functional MRI have an important role in research--to help us learn 
about the brain centers necessary for awareness--but are not currently 
used in clinical diagnosis.
    The prognosis for recovery of awareness in PVS has been quantified. 
In general, the prognosis depends on the cause and duration of PVS. It 
is worse after cardiac arrest and after a long duration of PVS. 
Patients remaining in PVS for greater than 3 months after cardiac 
arrest have only a slight chance of recovery of awareness. Recovery of 
awareness is unprecedented after 2 years. With head injury causing PVS, 
the times necessary to show these levels of prognostic certainty are 1 
year and 5 years respectively.
    The level of treatment we give patients is based on their prior 
stated wishes in light of their prognosis. We aggressively support and 
treat patients who would have wanted that level of treatment and cease 
treatment when patients have indicated that they would not want to be 
maintained on life-sustaining treatment in their current condition. If 
the patient has left no clear directives, we seek advice from their 
family and primary care physician about their understanding of the 
patient's preferences for treatment in light of their diagnosis and 
prognosis. It is the responsibility of the medical team and the family 
to fulfill the patient's wishes for treatment. We do everything 
possible to achieve this goal.
    During the question and answer time I hope we can further discuss 
the difficult issues of medical treatment, the complex ethical issues 
in medical decision making on these tragic patients, the importance of 
clear and compassionate communication with families, and some of the 
innovative scientific investigations that are being performed to better 
understand their illnesses. Thank you very much.

                           EXECUTIVE SUMMARY

    Human consciousness has two clinical dimensions: wakefulness, 
served by the brain stem ascending reticular activating system (ARAS) 
and its connections; and awareness of self and environment, served by 
the thalamus, the cerebral cortex, and their connections. Coma is an 
eyes-closed state of pathological unconsciousness from which subjects 
cannot be aroused to wakefulness, caused by a disorder of the brainstem 
ARAS. The vegetative state is a disorder featuring the ironic 
combination of wakefulness but absent awareness, caused by damage to 
the thalamus, the cerebral cortex, and their connections. Vegetative 
state patients have sleep-wake cycles. Their eyes are open when awake 
and closed when asleep. They breathe, blink, move their eyes, may make 
noises (though no words), and show reflex responses. But to the fullest 
extent testable, they have no awareness of themselves or their 
environment. When the vegetative state has been present for at least a 
month it is called the persistent vegetative state (PVS). The minimally 
conscious state (MCS) is a disorder of limited responsiveness in which 
patients retain awareness but their responses are so deficient that the 
evidence of their awareness may be difficult to detect. The most common 
causes of PVS and MCS are head trauma, brain damage from lack of oxygen 
during cardiac arrest, and stroke.
    The vegetative state usually is classified as a state of 
unconsciousness, but the terminology is ambiguous because, although PVS 
patients are unaware, they are awake. Because awareness is the most 
relevant component of consciousness, the loss of awareness counts as 
unconsciousness despite their open eyes.
    There is a biological limitation to our ability to know the 
awareness of another person. We cannot get inside their minds and 
experience what they experience. Therefore, we can know their awareness 
only by inference: we interact and stimulate them and study their 
responses. We infer whether they are aware by analyzing the quality of 
their responses and judge if a response is such that could be made only 
by an aware person. Responses produced by reflexes or so-called 
stereotyped responses do not count because they are integrated at a 
purely subcortical level.
    Physicians diagnosing PVS have the duty to show the complete 
absence of any evidence of awareness. Testing should include observing 
the patient, interacting with the patient during a neurological 
examination, talking to nursing caregivers and family members, and 
examining laboratory tests such as EEGs and CT scans or MRIs. The 
examination should be directed toward eliciting any sign of awareness. 
We talk to patients to see if they respond appropriately to commands, 
make clear eye contact, follow a moving object with their eyes 
consistently and intently, react to emotional stimuli such as seeing a 
photograph of a loved one or talking about a loved one. The examination 
is long, tedious, repetitive, and thorough. Because a random response 
might be interpreted as showing awareness, we test to see if it is 
reproducible. We interview nursing staff and family members to ask if 
they have observed any responses that they believe prove the patient is 
aware. If so, we ask them to demonstrate it to us. Only in the utter 
absence of evidence of awareness should we issue the diagnosis of PVS. 
EEGs commonly show diffuse, profound abnormalities and neuroimaging 
studies show brain atrophy if the injury or illness was many months or 
years earlier. Newer technologies such as brain PET scanning and 
functional MRI have an important role in research--to help us learn 
about the brain centers necessary for awareness--but are not currently 
used in clinical diagnosis.
    The prognosis for recovery of awareness in PVS has been quantified. 
In general, the prognosis depends on the cause and duration of PVS. It 
is worse after cardiac arrest and after a long duration of PVS. 
Patients remaining in PVS for greater than 3 months after cardiac 
arrest have only a slight chance of recovery of awareness. Recovery of 
awareness is unprecedented after 2 years. With head injury causing PVS, 
the times necessary to show these levels of prognostic certainty are 1 
year and 5 years respectively.
    The level of treatment we give patients is based on their prior 
stated wishes in light of their prognosis. We aggressively support and 
treat patients who would have wanted that level of treatment and cease 
treatment when patients have indicated that they would not want to be 
maintained on life-sustaining treatment in their current condition. If 
the patient has left no clear directives, we seek advice from their 
family and primary care physician about their understanding of the 
patient's preferences for treatment in light of their diagnosis and 
prognosis. It is the responsibility of the medical team and the family 
to fulfill the patient's wishes for treatment. We do everything 
possible to achieve this goal.

                              Bibliography

``The Persistent Vegetative State and Related States'' from James L. 
Bernat: Ethical Issues in Neurology, 2nd ed. Boston: Butterworth-
Heinemann, 2002, pp. 283-305.

``Questions Remaining about the Minimally Conscious State'' by James L. 
Bernat: Neurology 2002; 58:337-338.

American Academy of Neurology Quality Standards Subcommittee. Practice 
Parameters: Assessment and Management of Patients in the Persistent 
Vegetative State (Summary Statement). Neurology 1995; 45:1015-1018.

American Academy of Neurology. Position of the American Academy of 
Neurology on Certain Aspects of the Care and Management of the 
Persistent Vegetative State Patient. Neurology 1989;39:125-126.

The Multi-Society Task Force on PVS. Medical Aspects of the Persistent 
Vegetative State. New England Journal of Medicine 1994; 330:1499-1508, 
1572-1579.

Joseph T. Giacino et al., The Minimally Conscious State: Definition and 
Diagnostic Criteria. Neurology 2002; 58:349-353.

    The Chairman. Dr. Warden?
    Dr. Warden. Senator Enzi, Senator Kennedy, I am pleased to 
appear before you today to speak about a very common type of 
brain injury that may result in long-term health care needs.
    Brain injury is not a homogeneous entity. For example, the 
nature, location, and extent of brain injuries differs in 
trauma, TBI, stroke, and global lack of oxygen to the brain, or 
anoxic brain injury, and thus, there are very different 
recovery patterns and care needs. Today, I will speak about 
traumatic brain injury.
    TBI is a significant public issue. The CDC estimates that 
80,000 to 90,000 individuals with traumatic brain injury 
annually experience permanent disability from their injury. An 
estimated 5.3 million Americans, or two percent of the 
population, are currently living with lasting effects of their 
TBI. The CDC suggests that these numbers likely underestimate 
the problem. The cost to society is great, estimated in 1985 
annually in the United States as $37.8 billion.
    TBI includes closed and penetrating brain injury, both of 
which can result in widespread, diffuse, and local focal brain 
injury. A head striking a windshield in a motor vehicle 
accident causes the gelatinous brain to move forward in the 
skull. The brain, tethered on the brain stem, may be affected 
by rotational as well as acceleration and deceleration forces. 
The brain moves within the skull, cushioned only by a lining of 
cerebral spinal fluid. The long axons, or the communication 
fibers of the brain cells, may be stretched or even torn in 
severe injury. Recovery of the individual depends on many 
factors, not all of which we currently understand.
    Two important points follow from this mechanism of injury. 
First, the front and side parts of the brain are particularly 
likely to be injured, resulting in deficits in planning, 
initiation, motivation, judgment, and problem solving, known as 
executive functioning, as well as memory and emotions. To a 
lesser extent, sensory and motor functions are impaired.
    Second, most of the persons with long-term disabilities 
will be ambulatory patients. These persons have impaired 
social, interpersonal, and occupational functioning which can 
result in lost jobs and disrupted families.
    TBI may be acquired in association with other injuries. 
Soldiers who incur any polytrauma, including limb amputation, 
may have more difficulty assisting in the care of their other 
injuries if they have also sustained a traumatic brain injury. 
Similarly, civilian studies demonstrate that TBI accompanying 
significant physical injuries complicates outcome from TBI and 
leads to greater disability.
    Persons with TBI recover most rapidly in the first months 
to 1 year after injury, but improvements can be made up to 
several years after TBI. The potential of TBI patients to learn 
new skills over years underscores the need for treatment 
programs to facilitate recovery. Unfortunately, these patients 
are at high risk for falling through the cracks due to their 
brain injury. Someone with a short fuse who angers easily and 
has poor memory and organizational skills may be unlikely to 
negotiate our health care systems.
    A Scandinavian study of 15-year follow-up of patients with 
severe traumatic brain injury now living at home reported that 
the most distressing symptoms to their families were not their 
physical impairments and care needs, but rather their 
inappropriate behaviors and poor social functioning.
    Most TBI patients with long-term needs recover from the 
majority, and often all, of their physical, motor, and sensory 
injuries, yet have ongoing disability from deficits in memory, 
concentration and motivation, fatigue, and difficulty 
modulating emotions, including anger. Long-term unemployment 
rates for individuals with moderate to severe TBI is about 50 
percent.
    Research is needed to identify the most cost-effective 
treatments so these individuals may experience the best quality 
of life, including working, when possible. TBI therapies range 
from inpatient rehabilitation strategies to job coaches and 
mental health follow-up. Attached in the testimony are evidence 
reviews outlining specific rehabilitation interventions.
    Once again, I thank you for the opportunity to address the 
committee regarding traumatic brain injury resulting in 
disabilities, often of people who are ambulatory. Thank you.
    Senator Kennedy. [presiding]. Thank you, Doctor.
    [The prepared statement of Dr. Warden follows:]

             Prepared Statement of Deborah L. Warden, M.D.

    Mr. Chairman and members of the committee, I am pleased to appear 
before you today to give testimony regarding one very common type of 
brain injury that may result in long-term care needs, specifically 
traumatic brain injury (TBI). Brain injury is not a homogeneous entity; 
for example, the nature, location, and extent of brain damage differs 
in trauma (TBI), stroke, and global lack of oxygen to the brain (anoxic 
brain injury), and thus there are very different recovery patterns and 
care needs. Today I will speak briefly about TBI, including the 
magnitude of the problem, the effects on the brain, the types of 
disability that may result, and long-term health care needs of these 
individuals.
    TBI is a significant public health issue. The CDC estimates that at 
least 1.4 million people sustain a TBI annually. Of those, 50,000 die, 
235,000 are hospitalized, and 1.1 million receive care and are released 
from an Emergency Room (Langois et al., 2004). The CDC estimates that 
80,000 to 90,000 individuals with TBI annually experience permanent 
disability from their injury. An estimated 5.3 million Americans (2 
percent of the population) are currently living with disability due to 
a TBI. Because of the nature of the models used here, the CDC suggests 
that these numbers likely underestimate the problem. The short term and 
long term effects for those who have sustained a TBI, their families, 
and society come at an enormous cost. Estimates in 1985 placed the 
annual cost to the United States as $37.8 billion. This includes $4.5 
billion in direct hospital and extended care/other medical services, 
$20.6 billion on work loss and disability, and $12.7 billion on lost 
income due to death (CDC, 1999; Thurman et al., 1999).
    TBI includes both closed brain injury and penetrating brain injury. 
Both closed and penetrating brain injury can result in widespread 
(diffuse) and local (focal) brain injury. If one imagines a head 
striking a windshield in a motor vehicle accident, the gelatinous brain 
will move forward in the skull at the moment of impact. Acceleration 
and deceleration forces affect the brain when the moving head strikes 
an immobile object. The brain, tethered on the brain stem, may also be 
affected by rotational forces. The brain moves within the skull, 
cushioned only by a lining of cerebral spinal fluid. The long axons, or 
the communication fibers of the brain cells, may be stretched, or even 
torn in severe injury. Patients may be rendered unconscious and may be 
unable to form new memories for an additional period of time after they 
regain consciousness. Recovery of the individual depends on many 
factors, not all of which we currently understand.
    Two very important points follow from the manner in which the brain 
is injured. First, the frontal and temporal lobes, along with their 
connections, are particularly likely to be injured. The human functions 
that are affected by these injuries include higher level abilities such 
as initiation, motivation, planning and problem solving (known as 
executive functioning), as well as memory, and emotions. Individuals 
may also experience headache, dizziness, ringing in the ears, and 
visual changes. To a lesser extent, sensory and motor functions are 
impaired.
    Secondly, most of the persons with long-term disabilities will be 
ambulatory patients. These persons may have impaired social and 
interpersonal abilities which can cause them to have difficulties 
maintaining work and family relationships. This could render the 
individual without a job and without previously supportive family 
members.
    Individuals may sustain a TBI in association with other injuries. 
For example, soldiers who sustain a TBI in addition to a limb 
amputation may have a more challenging recovery as they are trained 
with their prosthesis, etc. Patients who incur any polytrauma are 
likely to have additional problems assisting in the care of their other 
injuries if they also have sustained a TBI. Evidence from civilian 
injuries supports this, as it has been demonstrated that TBI in 
addition to other significant physical injuries (e.g., traumatic 
amputations, spinal cord injury, etc.) complicates outcome and leads to 
greater disability (Dimopoulou, et al., 2004; Macciocchi, et al., 
2004).
    Persons with TBI recover most rapidly in the first 6 months to 1 
year after injury. But, improvements can be made up to several years 
after TBI. We understand these improvements as primarily compensatory 
gains (learning to adapt better to disabilities) but new research in 
brain plasticity suggests that improvements may also relate to a 
strengthening of brain cell connections.
    The potential of TBI patients to continue to learn new skills over 
years underscores the need to have treatment programs available to 
facilitate their recovery. Unfortunately, these patients are at high 
risk of ``falling through the cracks.'' Patients may drop out of our 
health care systems because of the disability caused by their brain 
injury. Someone with a ``short fuse'' who angers easily and has poor 
memory and organizational skills may be unlikely to negotiate our 
health care systems to keep appointments, reschedule appointments when 
necessary, provide the necessary forms when asked, or independently 
follow-up with treatment recommendations. Because of their brain 
injuries, these individuals may not even appreciate that they are 
impaired. They may not trust the health care system, and focus rather 
on a physical impairment (``All I need to do is to stop having these 
headaches, and then everything would be fine''). Our health care 
systems need to have trained providers who can address these patients' 
physical and neurobehavioral problems as well as mechanisms to follow 
patients to ensure they have not dropped through the cracks.
    Penetrating brain injury can also affect the frontal lobes. In the 
well known case of Phineas Gage, an explosion resulted in a tamping 
iron lodging in his frontal lobes. Though he appeared to be normal, he 
had severe disabilities in the form of personality changes caused by 
the injury resulting in his erratic, unpredictable, and inappropriate 
behavior. While he had previously functioned as a foreman on the 
railroad, with the ability and skills to supervise others, he was now 
rendered a pariah due to his behavior. He could neither supervise 
others nor act responsibly enough to keep any job. Mr.Chairman, I would 
submit that a person who has sustained such an injury to his executive 
functions, lost his livelihood, and in essence, is described as a loss 
of himself ``Gage stopped being Gage'' (J.M. Harlow, 1868 quoted in 
Damasio et al., 1994) has sustained a serious long term disability, 
despite his ability to walk and talk.

Long term health care needs:

    A Scandanavian study of a 15 year follow-up of patients with severe 
TBI now living at home reported that the most distressing symptoms to 
their families were not their physical impairments and care needs, but 
rather their inappropriate behavior and poor social functioning. These 
behavioral and psychological impairments interfered with the ability of 
the families to have normal interactions with these persons and with 
their communities (Thomsen, 1984).
    TBI patients with long term care needs include the small number of 
individuals who do not regain consciousness and others who require 
institutionalization for ongoing medical and/or behavioral needs and 
assistance with activities of daily living (ADL's). However, most TBI 
patients with long-term needs recover from the majority (and often all) 
of their physical injuries, yet have ongoing disability from deficits 
in memory, concentration and motivation, fatigue, and difficulty 
modulating emotions, including anger.
    As such, long term care needs encompass the relatively few who 
require inpatient comprehensive care and the ambulatory majority whose 
treatment needs range from supervised living situations to periodic 
treatment and follow-up as outpatients.
    When someone requires inpatient physical care, the treatment needs 
are clearer. When someone has ongoing cognitive and neurobehavioral 
problems, the medical care systems often do not reach the patients who 
need long term outpatient care. Research is needed to see which models 
of care delivery can provide cost effective care for these individuals. 
Different patients require different amounts of intervention and have 
different potentials. Many patients will be able to perform some type 
of paid or volunteer work while receiving outpatient care.
    Certainly not everyone who sustains a TBI has ongoing health care 
needs. Many of us have experienced a concussion (mild TBI) in the past. 
Even young individuals who have sustained moderate to severe TBI may 
have substantial recovery and return to their jobs within 1 year. 
(Salazar et al., 2000)
    However, a significant proportion of individuals will need ongoing 
intervention. When TBI patients in Colorado who had required 
hospitalization were surveyed 1 year after injury, approximately one-
third of them were still experiencing difficulties due to their 
disabilities (CDC, 1999). Long-term unemployment rates for individuals 
with moderate to severe TBI is about 50 percent (Malec et al., 1995, as 
cited in Chesnut et al., 1999). Risk factors for poor recovery include 
severity of injury, complications (e.g., increased intracrainial 
pressure, a drop in blood pressure, inadequate oxygenation, and 
infections during the acute period of injury), increasing age of the 
individual, associated injuries, and previous TBI.
    TBI therapies range from inpatient rehabilitation strategies to job 
coaches and mental health follow up (specific rehabilitation 
interventions with the most evidence are reviewed in Cicerone et al., 
2000 and Chesnut et al., 1999). It is important for individuals to 
realize that the emotional or cognitive changes they may experience are 
related to their brain injury. Fortunately, education regarding the 
patients? symptoms and expected recovery can help to decrease the 
number and severity of symptoms seen in mild TBI (Ponsford et al., 
2001).
    Once again, I thank you for the opportunity to address the 
committee. I hope this has been helpful in underscoring the large 
number of ambulatory patients with traumatic brain injury and ongoing 
health care needs.

                              Bibliography

Chesnut, RM et al. Rehabilitation for traumatic brain injury. Evidence 
report no. 2 (Contract 290-97-0018 to Oregon Health Sciences 
University). Rockville, MD: Agency for Health Care Policy and Research. 
February 1999.

Cicerone, KD et al. ``Evidence-Based Cognitive Rehabilitation: 
Recommendations for Clinical Practice'': Archives of Physical and 
Medical Rehabilitation 2000; 81: 1596-1615.

Damasi, H et al. ``The Return of Phineas Gage: Clues About the Brain 
from the Skull of a Famous Patient'': Science 1994; 264(5162): 1102-
1105.

Dimopoulou, Ioanna et al. ``Health-Related Quality of Life and 
Disability in Survivors of Multiple Trauma One Year After Intensive 
Care Unit Discharge'': American Journal of Physical Medicine and 
Rehabilitation 2004; 83(3):171-176.

Langlois, JA et al. ``Traumatic Brain Injury in the United States: 
Emergency Department Visits, Hospitalizations, and Deaths.'' Atlanta 
(GA): Centers for Disease Control and Prevention, National Center for 
Injury Prevention and Control; 2004.

Macciocci, SN et al. ``Effect of co-morbid traumatic brain injury on 
functional outcome of persons with spinal cord injuries'': American 
Journal of Physical Medicine and Rehabilitation 2004; 83(1): 22-26.

Ponsford, J et al. ``Impact of Early Intervention on Outcome After Mild 
Traumatic Brain Injury in Children'': Pediatrics 2001; 108(6): 1297-
1303.

Salazar, AM et al. ``Cognitive Rehabilitation for Traumatic Brain 
Injury: A Randomized Trial'': JAMA 2000; 283(3): 3075-3081.

Thomsen, Inger Biveke. ``Late Outcome of very severe blunt head trauma: 
a 10-15 year second follow-up'': Journal of Neurology, Neurosurgery, 
and Psychiatry 1984; 47:260-268.

Thurman, David J et al. ``Traumatic Brain Injury in the United States: 
A Public Health Perspective'': The Journal of Health Trauma and 
Rehabilitation 1999; 14(6): 602-615.

Thurman, DJ et al. ``Traumatic Brain Injury in the United States: A 
Report to Congress.'' Atlanta (GA) Centers for Disease Control and 
Prevention, National Center for Injury Prevention and Control; 1999.

    Senator Kennedy. Dr. Schumacher?
    Mr. Schumacher. Senator Kennedy, thank you very much. My 
name is Don Schumacher and I am the President of the National 
Hospice and Palliative Care Organization. I am here testifying 
on its behalf and on behalf of the 1 million patients who are 
receiving hospice care during the year 2005.
    The National Hospice and Palliative Care Organization is 
the largest and oldest not-for-profit leadership organization 
in the United States, representing over 3,200 hospice programs 
and 1,800 palliative care programs under which or through which 
the hospice benefits are provided largely through Medicare, the 
hospice Medicare benefit, Senator Kennedy, of which you were a 
major sponsor some years ago.
    It is an indisputable fact that all of us are going to die, 
but we do not plan for it. In fact, most families spend more 
time planning for their annual summer vacation than they do for 
a health care emergency. Research by the National Hospice 
Foundation showed that Americans are more likely to talk to 
their children about safe sex and drugs than to terminally ill 
parents about their choices in care at the end of life. One in 
four citizens over the age of 45 said they would not bring up 
these issues related to their parents' death even if the parent 
had a terminal illness and had less than 6 months to live. One 
of every two Americans say they would rely on family and 
friends to carry out their wishes, but 75 percent of these 
people have never taken the time to clearly articulate how they 
wish to be cared for during life's final journey, a difficult 
time for all patients and their family members.
    Talking about death provides a great deal of discomfort for 
most people. However, we do have a responsibility to our 
families and our loved ones to make our end-of-life care wishes 
known. Whether it is around the kitchen table or behind the 
witness table here in Congress, the American public needs to 
start a dialogue about how they want to be cared for at the end 
of life, and that may be the only good that has come out of the 
situation that we have seen play out in Florida these last 
several weeks.
    This year, the National Hospice and Palliative Care 
Organization launched Caring Connections, a consumer education 
initiative funded with support from the Robert Wood Johnson 
Foundation. Caring Connections provides free resources about 
advanced care planning, including state-specific advance 
directives to help families better understand options for care 
at the end of life. The Caring Connections Web site, 
caringinfo.org, also provides information on caregiving, pain, 
hospice, palliative care programs, and financial issues at the 
end of life.
    So far this year, Caring Connections has disseminated 
advance directives and resources to more than 15,000 consumers, 
and over the last 2 weeks, we have had over 200,000 downloads 
on our Web site about advance directives state-by-state by 
members of the United States public. In a single day, NHPCO 
staff fielded more than 900 phone calls and processed more than 
2,000 e-mails from people across the country requesting copies 
of state-specific directives.
    But requesting this form is not enough. You must complete 
the form and take some additional steps. These include giving 
the completed form to your doctor, your family and friends, and 
then use the form to talk to people that you love about your 
wishes and your thoughts about what you would like to have 
happen for you at the end of your life. No matter what side of 
the issue of this current debate one comes down on, one thing 
remains clear. This issue could have resulted in a very, very 
peaceful death several years ago had Mrs. Schiavo's wishes been 
written down on a piece of paper and made known to her family 
and her friends and had been given to her physician.
    It is important to note that advance directives are not 
only focused on what treatments you want, they are equally 
applicable and viable to indicate the treatments that you do 
not want, and I think that is just as important a point.
    Through this Robert Wood Johnson Foundation grant, NHPCO is 
launching a national consumer education initiative this month 
and it is called, ``It's About How You LIVE.'' The LIVE acronym 
is a call to action and empowerment for consumers. Learn about 
the options of end-of-life services. Implement your plans to 
ensure that your wishes are honored. Voice your decisions and 
plans to family, friends, spiritual care, and health care 
providers. And Engage in personal community or national efforts 
to improve end-of-life care, L-I-V-E.
    The national effort is the first step of our organization 
in implementing a far-reaching consumer information campaign. 
We are seeking national, State, and community partners to join 
in our efforts in promoting these important messages to people 
across the country.
    Congress also has the opportunity to take the next step in 
improving legislation that will highlight and strengthen 
advance directives, and I have three suggestions and 
encouragements for Congress to make.
    S. 347, the Advance Directives Improvement and Education 
Act, a bipartisan bill introduced by Senator Bill Nelson, 
Senators Lugar and Rockefeller, is a bill that NHPCO has 
supported for a number of years in previous Congresses and we 
have recently reiterated our support for the bill's provisions.
    This bill encourages all Medicare beneficiaries to prepare 
advance directives by providing a free physician office visit 
for the purpose of discussing end-of-life care choices and 
other issues involving decision making in time of 
incapacitation. Physicians would be reimbursed for spending 
time with their patients to help them understand situations in 
which advance directives would be useful and their medical 
options, the Medicare hospice benefit, and other concerns. The 
conversation would also enable physicians to learn about their 
patients' wishes, fears, religious beliefs, and life 
experiences that might influence their medical care choices. 
These are important aspects of a physician-patient relationship 
that are too often under-addressed.
    Another part of the bill would provide funds for the 
Department of Health and Human Services to conduct a public 
education campaign to raise the awareness of the importance of 
planning for care near the end of life. This campaign would 
explain what advance directives are, where they are available, 
what questions need to be asked and answered, and what to do 
with the completed, executed documents. HHS directly or through 
grants would also establish an information clearinghouse where 
consumers would receive state-specific information and 
consumer-friendly documents and publications.
    The bill also contains language that would make all advance 
directives portable, that is, useful from one State to another. 
As long as the documents were lawfully executed in the State of 
origin, they would be accepted and honored in the State in 
which they are presented, unless doing so would violate State 
law.
    All of the provisions of the Advance Directives Improvement 
and Education Act of 2005 are there for one reason, to increase 
the number of people in the United States who have advance 
directives, who have discussed their wishes with their 
physicians and their loved ones, and who have given copies of 
the directives to their health care providers, family members, 
and their legal representatives.
    As you may know--this is my second point--the authority for 
health professions programs expired several years ago. As this 
committee turns its attention to the reauthorization of these 
programs, we encourage you to address the professional needs we 
are discussing here today by establishing Hospice and 
Palliative Care Academic Career Awards modeled after the 
Geriatric Awards currently receiving $6 million under this 
program. Hospice and palliative medicine is an emerging field 
in medical training. The proposed awards would provide funds 
for junior faculty and require that they spend at least 75 
percent of their time training interdisciplinary teams of 
health care providers in hospice and palliative medicine.
    The legislation introduced last year by Senator Wyden, my 
third point, the Palliative Care Training Act, is a positive 
forward-looking response to the tragic struggle we have just 
witnessed. We urge your consideration of palliative medicine as 
you pursue the reauthorization of the health professions 
programs.
    So much more needs to be done. Understanding human 
suffering and how to help patients and their families face the 
end of life with dignity is essential. The baby boomers, as you 
know--I am a proud card-carrying member and we are walking 
toward Medicare with quite a clip and we will probably be the 
largest group of United States citizens who are going to resist 
talking about death because we believe we have a right to 
everything, that we do not have to make difficult choices or 
have difficult conversations. I urge this committee and 
Congress to take on the leadership to make sure that every 
American recognizes that their choices can be respected and 
honored with a very simple document that can be downloaded off 
of many different Web sites. Thank you very much.
    Senator Kennedy. Thank you very much.
    [The prepared statement of Mr. Schumacher follows:]

               Prepared Statement of J. Donald Schumacher

    Mr. Chairman, members of the committee, ladies and gentlemen, it is 
a privilege to be here today.
    My name is J. Donald Schumacher, and I am President and CEO of the 
National Hospice and Palliative Care Organization and am testifying on 
its behalf today. The National Hospice and Palliative Care Organization 
is the largest and oldest nonprofit leadership organization 
representing hospice and palliative care programs and professionals in 
the United States. Our organization is committed to improving end-of 
life-care and expanding access to hospice care with the goal of 
profoundly enhancing quality of life for people dying in America and 
their loved ones.
    The National Hospice and Palliative Care Organization offers 
information on local hospice and palliative care programs across the 
country, operates a toll-free HelpLine at (800) 658-8898, and maintains 
a Web site at www.nhpco.org.
    Talking about death makes most people uncomfortable. However, we 
have a responsibility to our families and loved ones to make our end-
of-life wishes known. Whether it is around the kitchen table or behind 
the witness table here in Congress, the American public needs to start 
a dialogue about how they want to be cared for at the end-of-life. In 
response to recent headlines, tens of thousands, if not millions, of 
people have requested information on advance care planning and 
hopefully, those personal conversations have started.
    It is an indisputable fact that all of us will die. Yet, until the 
past several weeks, Americans have for the most part been unwilling to 
plan for this eventuality. In fact, most families spend more time 
planning for their annual summer vacation than they do for a health 
care emergency.
    Research by the National Hospice Foundation showed that Americans 
are more likely to talk to their children about safe sex and drugs than 
to their terminally ill parents about choices in care as they near 
life's final stages. According to this research, one in four citizens 
over the age of 45 say they would not bring up issues related to their 
parent's death--even if the parent had a terminal illness and had less 
than 6 months to live. One out of every two Americans say they would 
rely on family and friends to carry out their wishes, but 75 percent of 
these people have never taken the time to clearly articulate how they 
wish to be cared for during life's final journey.
    This year, the National Hospice and Palliative Care Organization 
launched Caring Connections, a consumer education initiative funded 
with support from the Robert Wood Johnson Foundation. Caring 
Connections provides free resources about advance care planning; 
including state-specific advance directives to help families better 
understand options for care at the end of life. The Caring Connections 
Web site, www.caringinfo.org also provides information on care giving, 
pain, hospice, financial issues and grief. So far this year, Caring 
Connections has disseminated advance directives and resources to more 
than 15,000 consumers.
    In a single day, the National Hospice and Palliative Care 
Organization's Caring Connections HelpLine staff fielded more than 900 
phone calls and processed more than 2,000 e-mails from people across 
the country requesting copies of state-specific advance directives. 
But, requesting a form is not enough. You must complete the form and 
take additional steps. These include giving the completed form to your 
doctor, family, and friends, and then use the form to talk to people 
about these issues and your wishes at the end-of-life.
    It is important to note that advance directives are not only 
focused on what treatments you do not want. They are equally applicable 
and viable to indicate all of the treatments that you do want. This 
information gets lost in the information about their utility. Whether 
you want your health care providers to try every possible life-
prolonging treatment until the moment you die, or to solely focus on 
providing comfort care at the end-of-life, you still need to document 
and talk about your wishes.
    Through a Robert Wood Johnson Foundation grant, NHPCO is launching 
a national consumer education and engagement campaign this month called 
``It's About How You LIVE.'' The LIVE acronym is a call to action and 
empowerment for consumers:
     Learn about options for end-of-life services and care.
     Implement plans to ensure wishes are honored.
     Voice decisions and plans to family, friends, spiritual 
care and health care providers.
     Engage in personal, community or national efforts to 
improve end-of-life care.
    This national effort is the first step for our organization in 
implementing a far-reaching consumer information campaign. We are 
seeking national, State, and community partners to join our efforts in 
promoting these important messages to people across the country.
    Congress also has the opportunity to take the next step by 
approving legislation that will highlight and strengthen advance 
directives. S. 347, The Advance Directives Improvement and Education 
Act, introduced by a bipartisan group of Senators, is a bill that NHPCO 
has supported for a number of years in previous Congresses and we have 
recently reiterated our support for the bills' provisions.
    The Advance Directives Improvement and Education Act encourages all 
Medicare beneficiaries to prepare advance directives by providing a 
free physician office visit for the purpose of discussing end-of-life 
care choices and other issues around medical decision-making in a time 
of incapacitation. Physicians would be reimbursed for spending time 
with their patients to help them understand situations in which an 
advance directive would be useful, medical options, the Medicare 
Hospice Benefit, and other concerns. The conversation would also enable 
physicians to learn about their patients' wishes, fears, religious 
beliefs, and life experiences that might influence their medical care 
wishes. These are important aspects of a physician-patient relationship 
that are too often unaddressed.
    Another part of the bill would provide funds for the Department of 
Health and Human Services to conduct a public education campaign to 
raise awareness of the importance of planning for care near the end of 
life. This campaign would explain what advance directives are, where 
they are available, what questions need to be asked and answered, and 
what to do with the executed documents. HHS, directly or through 
grants, would also establish an information clearinghouse where 
consumers could receive state-specific information and consumer-
friendly documents and publications.
    State-specific information is needed because in addition to the 
Federal Patients Self-Determination Act passed in 1990, most States 
have enacted advance directive laws. Because the State laws differ, 
some States may be reluctant to honor advance directives that were 
executed in another State. The bill contains language that would make 
all advance directives ``portable,'' that is, useful from one State to 
another. As long as the documents were lawfully executed in the State 
of origin, they must be accepted and honored in the State in which they 
are presented, unless doing so would violate State law.
    All of the provisions in the Advance Directives Improvement and 
Education Act of 2005 are there for one reason: to increase the number 
of people in the United States who have advance directives, who have 
discussed their wishes with their physicians and families, and who have 
given copies of the directives to their loved ones, health care 
providers, and legal representatives.
    I am honored to have been asked to testify today about public 
educational efforts focused on decision making at the end of life, but, 
I would also like to address the delivery of such services in the 
setting that I know best. It's an approach to care that each year meets 
the needs of over 1 million terminally ill Americans and their 
families. Of course, I am referring to hospice care.
    The modern day American hospice movement began in 1971 in 
Connecticut. The first freestanding hospice in this nation was the 
Connecticut Hospice in New Haven and it was founded on the model of 
care best identified with Dame Cicely Saunders, M.D., who opened her 
now famous Saint Christopher's Hospice in 1967 in Sydenham, England. 
Her center became the model for comprehensive whole person and family 
care at the end of life (i.e., spiritual, psychological and medical 
team-driven care of the terminally ill patient and his/her family).
    While hospice began as a movement in this country, it was made part 
of the Medicare program in 1982. Since enactment, the Benefit has 
afforded millions of terminally ill Americans and their families an 
avenue toward a death with dignity.
    Hospice is not ``a place.'' It is an approach to end-of-life care 
focused on pain relief and symptom management, and hospice care is 
offered primarily in a patient's home. It can also be provided in a 
nursing home, assisted living facility, a hospital, or in a hospice 
inpatient facility.
    No one is ever forced to use hospice care. People either choose 
hospice care themselves or their health care surrogate, designated as 
responsible for their best interest, makes the decision. Normally, a 
physician outside of hospice is involved in the decision and he or she 
must certify that the patient's illness is terminal and that they have 
a limited life expectancy.
    Simply defined, hospice care focuses on whole person care, and is 
not, as too often is thought, just a place to die. Hospice embraces 
these principles:
     Supports and cares for persons in the last phases of 
incurable disease so that they may live as fully and as comfortably as 
possible;
     Recognizes dying as part of the normal process of living 
and focuses on maintaining the quality of remaining life;
     Exists in the hope and belief that through appropriate 
care, and the promotion of a caring community sensitive to their needs, 
patients and their families may be free to attain a degree of mental 
and spiritual preparation for death that is satisfactory to them; and,
     Offers palliative care to terminally ill people and their 
families without regard for age, gender, nationality, race, creed, 
sexual orientation, disability, diagnosis, availability of a primary 
caregiver, or ability to pay. (NHPCO Standards of Hospice Program of 
Care, 1993)
    Far too many patients die without ever being referred for hospice 
care. This is often the result of patients and families being unaware 
of hospice and palliative care programs available to them. This lack of 
consumer education regarding compassionate end of life care can lead to 
tragic and unnecessary pain and suffering--physical, emotional and 
spiritual--for the patient and their families. That kind of suffering 
does not have to happen in your city or anywhere else in the country.
    There are nearly 40 million senior citizens in the United States, 
but in the next 30 years, that number is expected to double to 80 
million as baby boomers reach age 65. Surprisingly, 90 percent of the 
respondents to the NHF study didn't realize that all inclusive hospice 
care is available to this aging population, as Medicare beneficiaries.
    Once the subject of end of life care is broached, it is clear what 
we want. The NHF research indicates what people would choose when 
provided end of life care:
     Someone to be sure that the patient's wishes are enforced,
     Being able to choose the type of service they could 
receive,
     Emotional support for patient and family,
     Control of pain,
     Opportunity to get one's life in order,
     Spiritual support for patient and family,
     Care by a team of professionals,
     Being cared for in one's own home,
     Continuity of care, and
     Relief of burden on the family and friends.
    In fact, these are the guiding tenets of hospice care.
    Congress recognized the need for such care in 1982 when it enacted 
the Medicare Hospice Benefit to provide compassionate and specialized 
care for the dying. While millions of terminally ill older Americans 
and their families have had the opportunity to experience more 
comfortable and dignified deaths, the reimbursement rate has not kept 
pace with the changes in end of life care--especially due to increasing 
costs of prescription drugs and outpatient therapies, as well as 
decreasing lengths of service. Medicare Hospice Benefit reimbursement 
rates need to be maintained if hospice programs are to continue to 
provide high quality care and related services that our Nation's most 
vulnerable population needs and deserves.
    Once a patient chooses hospice care, he or she is afforded the per 
diem reimbursement as the only Medicare payment for all costs related 
to the terminal illness, including physicians' oversight services, 
nursing care, counseling, spiritual support, bereavement counseling, 
medical appliances, drugs, home health aides, homemaker services, 
physical and occupational therapies, dietary advice, and volunteer 
assistance. An interdisciplinary team provides medical, social, 
psychological, emotional and spiritual services to the hospice patients 
and their loved ones.
    In 1982, when hospice care was added as a Medicare benefit, the 
routine home care rate was set at $41.46 per day. When the benefit was 
established, the reimbursement rate did not include an annual 
inflationary update. Rather, Congress provided specific rate increases 
and later tied the hospice reimbursement rate to the hospital market 
basket to provide for inflation. Unfortunately, the rate has not kept 
pace with the growing cost of delivering care to terminally ill 
Medicare beneficiaries. The fiscal year 2005 routine home care rate, at 
which more than 95 percent of all Medicare hospice patients are billed, 
is $122.
    Unfortunately, the current reimbursement rate does not begin to 
cover all of the expenses incurred in delivering compassionate and 
specialized care to dying Americans. A hospice cost study by Milliman & 
Robertson (M&R) states, ``the trend is clear that Medicare hospice per 
diem payments do not cover the costs of hospice care and result in 
significant financial losses to hospice programs throughout the 
country.'' M&R notes several other factors driving the losses that 
hospices are experiencing today.
    According to the M&R study, ``new technology, including 
breakthrough therapies and prescription drugs, has increased hospice 
costs far beyond Medicare's annual market basket update. For example, 
when Medicare set hospice payments in the 1980s, prescription drugs for 
hospice patients represented about $1 of the per diem reimbursement 
rate. M&R noted that these costs increased to approximately $16 per day 
by the late 1990s (an increase of about 1,500 percent).'' Drug costs 
have skyrocketed, making pain relief and symptom management, 
cornerstones of hospice care, much more expensive. Many of the most 
effective and widely used drugs for relief of cancer patients' 
discomfort are shockingly expensive. Duragesic, one of the most 
commonly used pain relievers for cancer patients, can cost up to $36 
per dose. Zofran, an effective anti-nausea drug, costs almost $100 per 
day--exceeding the entire routine home care rate paid by Medicare to 
the hospice provider.
    But escalating drug costs are not the only problem facing hospices.
    For a variety of reasons, more and more patients are being admitted 
to hospice programs very late in their illness, when they require a 
greater intensity and variety of services. Their hospice care needs, 
including pain and symptom management and personal support, are often 
greatest in the first few days following admission and in the final 
days and hours before death.
    The Medicare Hospice Benefit was designed to balance the high costs 
associated with admission and the period immediately preceding death 
with the somewhat lower costs associated with periods of non-crisis 
care. However, the median length of service for hospice patients has 
fallen rapidly in recent years leaving fewer ``non-crisis'' days. The 
very short lengths of service and advances in clinical practices, both 
significant cost factors, were not anticipated at the time the original 
rate structure was formulated. These added financial pressures are 
having a devastating impact on hospices.
    In the longer-term, Congress needs to undertake a review of the 
assumptions under which hospice reimbursements are made. New drug 
treatment modalities and types of medications have come to establish 
new areas of medical practice, and we need to have them available to 
the hospice practitioner and other health professionals. We in hospice 
know how to alleviate pain and control symptoms. But, far too often, 
the skyrocketing cost of such treatments force us to seek other less 
expensive and perhaps less effective alternatives. In its May 2002 
Report to Congress, MedPAC recommended that the Secretary of Health and 
Human Services study ways to develop a high-cost outlier policy to 
address these issues.
    By adopting the Medicare Hospice Benefit in 1982, Congress took an 
important step in changing a deeply embedded aspect of our culture, one 
that denies the inevitability of death and ignores the value of the end 
of life. We continue to believe today, that hospice care is our best 
response to caring for people at the end of life.
    Yet, there are any number of obstacles to ensuring access to 
hospice care for individuals in this country. In fact, we are 
witnessing an alarming decline in the lengths of service for hospice 
patients, which is turning hospice into a ``brink of death'' benefit. 
The National Hospice and Palliative Care Organization's data show that 
the number of hospice patients has steadily increased, totaling over 1 
million individuals last year. In 2003, their median length of service 
fell to just 22 days, which represents a 24 percent decline since 1995. 
This means that over \1/2\one half of all hospice patients--50 percent 
of men, women and children in hospice care--die within 1 month of 
admission. This is happening at a time when access to hospice care 
should be deepening and broadening, not contracting.
    When designing the Medicare Hospice Benefit, Congress recognized 
that predicting when death will occur is not an exact science. Even the 
Office of Inspector General (OIG), after its exhaustive 3-year audit 
and investigation of the hospice provider community, concluded that 
``[o]verall, the Medicare hospice program seems to be working as 
intended.'' But the cloud of concern raised by these efforts continues 
to impede appropriate access to hospice care for the terminally ill.
    In its 1997 report, ``Approaching Death, Improving Care at the End 
of Life,'' the Institute of Medicine warned:

        ``Although hospices should not be immune from investigations of 
        possible fraud or abuse, the committee urges regulators to 
        exercise extreme caution in interpreting hospice stays that 
        exceed 6 months as evidence of anything other than the 
        consequence of prognostic uncertainty. To do otherwise would 
        inappropriately penalize hospices and would threaten the trust 
        that dying patients need to have in those who care for them. It 
        might also discourage more timely admission to hospice of 
        patients now referred only a few days before death, after 
        important opportunities for physical, psychological, spiritual 
        and practical support have already been missed.''

    The overall effect of these policies and activities has created a 
climate in which hospices and, most importantly, attending physicians 
fear that unless they can predict with certainty that a patient will 
live no longer than 6 months, they will be subject to increased 
government scrutiny and possible sanctions for hospice admissions or 
referrals. The end result of this atmosphere usually relegates patients 
to continued hospitalization at far greater costs to the Medicare Trust 
Fund. But a referral to hospice can save Medicare money. A Lewin (1995) 
study cited savings of $1.52 to the Medicare program for each $1.00 
spent on hospice.
    We are awaiting the release of a cost efficiency study conducted at 
Duke University that was funded through a grant by the Robert Wood 
Johnson Foundation that we hope will also demonstrate substantial cost 
savings for the Medicare program while providing high quality end-of-
life care.
    There is no better success story in Medicare than the Hospice 
Benefit. It is serving over 1 million patients and their families 
annually with a well structured, comprehensive and cost-effective 
benefit. Yet, the combination of policies and actions has conspired to 
impair access to hospice care. We need help to reverse this cycle and 
reduce the growing climate of concern that now engulfs physicians and 
hospices as they struggle to admit and care for our most vulnerable 
citizens.
    We applaud and support the efforts to eliminate Medicare fraud. 
However, in the spirit of the Institute of Medicine's warnings and in 
the face of unquestionable suffering and need, it is troubling that the 
unintended effects of these actions may limit timely access to hospice 
care.
    Hospices need a supportive environment that focuses on issues that 
matter to the quality of care in hospice programs. Terminally ill 
citizens and their families need a strong, clear and consistent message 
that encourages the earliest consideration of hospice care within the 
dying process and that ensures access to this specialized form of care 
becomes more readily available to our most vulnerable population.
    Apart from the hospice setting, we need to focus attention on the 
inadequacy of pain management for chronically and terminally ill 
patients. The Study to Understand Prognoses and Preferences for 
Outcomes and Risks of Treatment (SUPPORT) on how persons died in 
hospitals reported inadequate pain management and inattention to a 
patient's express wishes in their choice of care as common. Clearly, 
these and other issues, including a self-determined life closure, a 
safe and comfortable dying, and appropriate and effective bereavement 
need to be addressed if we are to improve the process of dying in 
America.
    In providing whole-person care, health care professionals must take 
the time, even in the present managed care environment, to listen 
attentively, and enter into dialogue with their patients. These same 
health care professionals must also understand and practice state-of-
the-art pain and symptom management (such as those developed and honed 
over the past 25 years by hospice and palliative care programs). It is 
within this context that the government needs to devote additional 
resources to further develop and advance the scientific understanding 
of pain and symptom management and make the information widely 
available to physicians, pharmacists, hospitals, research institutions, 
local governments, community groups and the general public.
    Far too many medical education institutions are deficient in 
addressing suffering and palliative medicine as an integral part of 
their curricula. Established medical practitioners (other than hospice 
professionals) often lack an aggressive commitment to alleviate the 
distress and suffering of the dying. Concern about the use of opiates 
abounds. Palliative care physicians working with hospice-trained nurses 
and others can, in virtually all patients, control the physical 
distress of dying. If patients are provided timely and appropriate 
care, they will have been receiving opiates or other medications, if 
needed, for some time prior to their death. In that situation, 
escalation of medications if required to manage severe pain, is well 
tolerated and will not hasten death, but will allow a more peaceful and 
dignified dying.
    Our health professions' schools need additional resources to 
develop and implement programs to provide ongoing education and 
training to their students in all phases of palliative care. Once these 
professionals are armed with the knowledge of new and constantly 
updated pain and symptom management techniques, they need to be assured 
that their aggressive treatment of pain and symptom management will not 
be hindered by outdated concepts or misguided legal review. As 
practicing health care providers, we need access to readily available 
and state-of-the-art guidelines for the treatment of pain.
    As you may know, authority for the Health Professions programs 
expired on September 30, 2002. As this committee turns its attention to 
the reauthorization of these programs, we encourage you to address the 
issues we are discussing today by establishing Hospice & Palliative 
Care Academic Career Awards (PACA) modeled after the geriatric awards 
(currently receiving $6 million). This is an emerging field in medical 
training. The proposed awards would provide funds for junior faculty 
and require they spend at least 75 percent of their time training 
interdisciplinary teams of health care professionals in hospice and 
palliative medicine.
    One valuable lesson in the health care cases watched by the world 
over the past few weeks is how important expert, sensitive, 
compassionate medical care is at the end of life. Many hospices and 
hospitals are interested in hiring physicians with training in this 
field, but there are very few training programs available. A crucial 
step forward would be the support of young faculty in palliative 
medicine to ensure that the Nation's medical schools are training 
future generations of physicians how to properly care for patients with 
advanced illness, as well as their families.
    In order to prevent distressing struggles with health care choices, 
it is critically important that physicians be trained how to help 
patients and families come to terms with their conditions and make the 
difficult choices that are so common, especially near the end of life. 
The legislation introduced last Congress by Senator Wyden; the 
``Palliative Care Training Act'' will do this by encouraging the hiring 
and training of Palliative Medicine experts, who are skilled in helping 
patients and families through this challenging time. This legislation 
is a positive, forward looking response to the tragic struggle we have 
all witnessed.
    Trained palliative care specialists can upgrade the skills of all 
the physicians they work with, and improve the ``standard of care'' of 
patients with life-limiting diseases. As we confront the complex issues 
of how to pay for the care of our aging population, palliative care is 
one of the few areas in which the best care is often less expensive, 
because it can be done at home. Hospitals are finding it financially 
advantageous to pay the salaries of such specialists because the 
patients get more comfortable quickly, families feel more able to cope, 
and the discharge home happens sooner, reducing the costs 
significantly. Health care dollars would go much farther if they were 
used to provide expert palliative care at home or in a hospice 
inpatient unit, rather than in a hospital. By adding significantly to 
the number of teachers in this new field, this act could generate 
substantial savings, while relieving the suffering of distressed 
families. We urge your consideration of this legislation as you pursue 
the Health Professions Reauthorization.
    Effective pain and symptom management needs to be recognized as a 
core service of our health care community. Longer-term solutions 
involve exploring the legal and regulatory barriers to pain management, 
the level of competence in treating pain by physicians around the 
country and how the reimbursement policies of both the Federal health 
programs and private health insurers affect pain management.
    Hospice programs and organizations have a responsibility to educate 
patients, medical students, residents, health care professionals, 
managed care systems, our communities, and our congressional leaders 
about quality end-of-life care and for whom and when it is appropriate.
    The Medicare Hospice Benefit has served as a wonderful basis for 
paying for hospice care. Its reimbursement rates need to be 
dramatically increased in order to bring it current with new 
technologies and treatment modalities. However, as our knowledge and 
experiences grow, we need to think about how we can better extend 
hospice and palliative care to children, minorities, and persons with 
advanced chronic, non-curable diseases to ensure universal and timely 
access to hospice services when desired and appropriate, not just in 
the last few days or months of life.
    This list of recommendations is certainly not all-inclusive. So 
much more can be done. Understanding human suffering and how to help 
patients and their families face the end-of-life with dignity is 
essential. By enhancing the educational process and focusing public 
attention on end-of-life issues, we will increase the awareness of when 
patients will most benefit from non-curative, supportive hospice and 
palliative care, thus providing timely hospice referrals and 
understanding where such care fits in the continuum of medical care.
    It is time to re-examine how we care for our most vulnerable 
citizens, the terminally ill and their families, so they might enjoy 
living to the fullest--even as they approach death. Thank you.

    Senator Kennedy. This has been an extraordinary panel and 
you have had a lot of very constructive and suggestive ideas. I 
know that when we develop our approach on this issue, we are 
going to want to incorporate many of those ideas and get your 
reactions to it.
    As you probably know, since you are all old, or young, 
witnesses, as the case might be, that when that bell rang, it 
meant 20 minutes. As you can see on the clock, that 20 minutes 
of time has run out. Our chairman will be back momentarily, but 
it necessitates that I will have to recess this hearing for 
just a moment. I had some questions and I will look forward to 
reading the answers.
    But I think Dr. Schumacher probably responded to the 
question that people that are watching this program are 
thinking, what can I do today? What can I do? I think it was 
outlined with the Nelson bill.
    Mr. Schumacher. Yes.
    Senator Kennedy. We have to pass that legislation. They are 
viewpoints that we certainly hope would be initiated.
    I was interested about what, when most people write down 
their wishes, what they do write down. I would be interested in 
what the panel's reaction to that is, and how much of a problem 
these conflicts are and how they are generally resolved? Those 
are areas that I was kind of interested in. I am going to have 
to recess here, but if you do have a chance, maybe in the quick 
recess, give a little thought to those and maybe make a comment 
on it when the chairman comes back, I would very much 
appreciate it. But I want to give you the assurance that your 
views are going to be carefully considered.
    Dr. Schumacher, I just found out about hospices years ago 
with Phil Hart, who is a very distinguished Senator from 
Michigan whom the Hart Building is named after. I was 
completely unfamiliar with it, and he had the most 
extraordinary, if you can call it a successful experience----
    Mr. Schumacher. It began in Ireland, you know.
    Senator Kennedy. There you go. [Laughter].
    Senator Burr is here, so we don't need to recess. We were 
just talking about Ireland, Senator. There you go.
    And then a very good friend, Frank Church, who is another 
Senator from Idaho and went through this. So we welcome the 
opportunity to be a strong supporter of the program.
    Mr. Schumacher. Thank you very much.
    Senator Kennedy. Listening to the whole panel here has been 
enormously useful and productive. You all have been of great 
help to us in helping us formulate policy, so I thank all of 
you very, very much.
    You will excuse me, Mr. Chairman. This splash of orange, as 
many would understand in the Ukraine, is for President 
Yushchenko, who is going to be here and honored with a Joint 
Session. It is awkward, because we all have to be in a number 
of different places, but he certainly was an extraordinary 
figure in terms of democratic values and the Joint Session will 
honor his presence. I am going to have to excuse myself from 
these hearings, but I thank you all very, very much. Thank you, 
Mr. Chairman.
    The Chairman. [presiding]. Thank you, and thanks for 
keeping this going while I went over to vote. I do appreciate 
the outstanding testimony, and I apologize for not being 
present for part of it. I do appreciate your submitting your 
testimony in advance so that I would have a chance to review 
it. There is some tremendous information here today. It takes 
quite a while to assimilate it, I am sure, but some excellent 
information.
    I will ask a few questions here and then turn it over to 
Senator Burr.
    Mr. Turnbull, given that you work with individuals who no 
longer may be able to or maybe never have been able to advocate 
for themselves, what are some of the key legal documents that 
everybody should have in place? What public or private entities 
exist that can provide legal advocacy for individuals who are 
not able to advocate for themselves?
    Mr. Turnbull. Senator, I think it begins with the training 
in the public schools. We can train people to be more competent 
than we are training them in special education and general 
education. So I would begin the training on self-determination 
very early.
    That may make it possible for many more people to execute 
the appropriate documents. Obviously, a last will and testament 
and power of attorney, durable power of attorney, a living 
will, and if not by the person, then by the person's family and 
friends, a discretionary trust. There are other state-based 
documents, such as limited guardianship, and I really mean 
limited, and in some cases some plenary guardianship is 
necessary.
    You asked about various entities that might assist in this. 
Certainly Dr. Schumacher has listed a few. There are 
professional organizations in the field of intellectual 
disability. There are family organizations. It would be 
wonderful if Congress would authorize and enable these 
organizations to educate their constituency.
    Very few people have six degrees in the family, as my wife 
and I do. Very few of them have the access to information that 
we have. There is a huge need for the families, and 
particularly the persons with disabilities, to understand more 
about what they are doing, and I would emphasize that this 
outreach can be carried out through some existing entities, the 
government funds, the Parent Training and Information Centers, 
protection and advocacy agencies, university centers on 
excellence in disabilities, and the Developmental Disability 
Councils at the State level.
    So I think there are ways to get informed consent, and 
oftentimes what we aren't getting is the information element in 
the consent.
    The Chairman. Thank you. Dr. Schumacher, you mentioned that 
it is estimated that less than 20 percent of Americans have 
prepared advance directives. Obviously, in working with hospice 
providers, you deal with end-of-life issues on a daily basis, 
which is why you are urging others to have those discussions 
now. Do you have any ideas about how Congress might encourage 
more Americans to address this issue in advance, and what sort 
of issues should they consider when putting a document 
together? How would you ensure that one's spiritual and moral 
beliefs are captured in such a document?
    Mr. Schumacher. Absolutely. I, while you were out voting, 
encouraged Senator Kennedy to focus in on S. 347, which is 
cosponsored by Senators Nelson, Lugar, and Rockefeller It 
actually does a very good job at helping Congress to focus in 
on messaging to the American public. What are some of the key 
issues that are important when one looks at one's end-of-life 
care planning? That planning includes not just filling out a 
piece of paper, which one can download off a number of Web 
sites, including ours, but it is also around the kitchen table, 
around your church activities, families at Thanksgiving, having 
the conversation about what it is as an individual that you do 
and you do not want specifically to happen to you if you are in 
a medical emergency and you are not able to make decisions for 
yourself.
    It is those conversations that I think are almost as 
important as are the documents that need to be filled out. 
Those conversations, had they been secured and had been written 
down in this situation we looked at in Florida, probably would 
have precluded all of the last 15 years of pain that both of 
those families endured, along with Mrs. Schiavo.
    So Congress, I think, in supporting legislation that would 
really make it a very visible, positive thing--it is largely 
for Medicare beneficiaries in this legislation--for the 
conversations, the specific technical language on forms to be 
downloaded or be given to families, have conversations with the 
physicians, have them filled out, have the records actually be 
kept at home, in your doctor's office, and on your own person 
or a family member that is making decisions for you, these are 
the most effective ways, I think, of us precluding situations 
like the one we did see in Florida to continue.
    The Chairman. Thank you. My time on the first round is 
almost expired, so I will turn to Senator Burr.
    Senator Burr. I thank the chairman. I apologize to the 
witnesses for not being here for your testimony, but let me 
assure you I will go back and read it in great detail.
    Dr. Bernat, let me ask you, were a patient to enter the 
emergency room today and the attending physician limited the 
diagnostic options that they had and a misdiagnosis was made of 
the illness and that patient died, in today's atmosphere, would 
that generate a lawsuit?
    Dr. Bernat. Senator Burr, if I understand your question 
correctly, a patient comes in the emergency room, you said 
there is limited diagnostic tests available?
    Senator Burr. No. The attending physician determines only 
to do one or two diagnostic tests, but not the full battery of 
what might give a very accurate diagnosis. Would the attending 
physicians be susceptible in today's atmosphere to a lawsuit?
    Dr. Bernat. Well, I think it would depend on what the 
standard of care is for that particular evaluation. If the 
standard of care required doing the full battery, as you put 
it, then certainly there would be a liability. If the standard 
of care did not require that, then I would think there would be 
less liability.
    Senator Burr. I am certainly asking a question that deals 
with the decision or the lack of the decision to choose a PET 
scan as it relates to Mrs. Schiavo, but I am not here to focus 
on that particular instance. I am here more to focus on the 
decisions that are made in health care and understanding that 
we are not here to practice medicine. We are here to ask tough 
questions and to set policy.
    Mr. Turnbull, I would especially like to thank you for 
being here because I think you have become a very strong 
advocate, and as the parent of a child that is disabled, I 
think you speak for a lot of people in the country.
    My concern is that this one incident has suggested that 
there are some things that Congress has no role in. I would 
like to say that I sort of agree from a standpoint of Congress 
practicing medicine. But I don't believe what we did was 
practice medicine. I don't think we were second-guessing the 
diagnostic decisions that were made, even though they certainly 
didn't exhaust every option that was out there.
    I think what we exercised was the fact that we understand 
that we set a precedent with everything that we do in Congress, 
but we also set a precedent with everything we choose not to do 
and that this was one of those situations where to do nothing 
sends a signal to future legislators that this didn't raise to 
the level of a second review, or as some might suggest, a third 
or a fourth or a fifth in the system that it had gone through.
    And I would just challenge each one of you, because I think 
the criticism was unfair. I believe that this is a great day 
for the members of the House and the Senate, take the fringes 
and stick them to the sides a little bit to the core of the 
members, because for once they weren't Members of Congress or 
legislators. They were parents. And they said, here is an issue 
that raises to a level that, you know what, as society, we 
ought to take one second look at this issue.
    So I would challenge you from a standpoint of whether a 
decision about a patient and the fact that you didn't exhaust 
every diagnostic tool didn't open you to a lawsuit in today's 
atmosphere. I believe that it would. I believe the tendency 
because of that is to do everything possible to try to 
understand the exact state of a person who is ill. It 
disappoints me that we didn't go to that length in this 
particular case, but it also encourages me that when I am not 
here, when Mike Enzi is not here, when most of you are not here 
at the panel, that a future Congress will look at the fact that 
we did say there are some things that rise to the occasion, 
that they override whether it is State or Federal jurisdiction. 
But for the long-term future of the country, we should set a 
precedent that you do stop and you do ask questions and 
possibly you do act, but you don't go over it like a speed bump 
in a parking lot, like it had no importance whatsoever.
    I want to thank all of you for your willingness to come in, 
for the value of your testimony. I am sure this won't be the 
last discussion we have about the world of palliative care and 
consequently what our responsibilities continue to be to the 
disabled. But it is about the future of the country and it is 
about the example that you on that side of the table and us on 
this side of the dais set for our children and our 
grandchildren as to what we expect them to pay attention to. I 
thank each one of you.
    Thank you, Mr. Chairman.
    The Chairman. Thank you, Senator.
    I have a few more questions here. Dr. Warden, as the 
National Director of the Defense and Veterans Brain Injury 
Center, in your testimony, you mentioned traumatic brain injury 
(TBI) and acquired brain injury (ABI). Can you help provide 
additional clarity about the distinction between TBI and ABI? I 
am particularly interested in this given that the Traumatic 
Brain Injury Act expires this year and I want to understand 
this distinction.
    Dr. Warden. Certainly. Traumatic brain injury, which 
results from trauma, has a particular constellation of symptoms 
and physical results. As I mentioned, it can be either closed 
or penetrating, and what really characterizes, for example, 
closed traumatic brain injury would be the potential for the 
brain to keep moving within the skull and acquire injuries, 
both in terms of those connection fibers and focally in terms 
of possible bruises or contusions in the brain or impinging 
from the outside of the brain. This typically results in a 
group of people who may be severely injured initially, and in a 
small percentage in an ongoing way, but a much larger 
percentage of people who will have some disability or 
persistent effects later.
    I would also mention that the demographics are somewhat 
different, so here, the people at greatest risk are typically 
males between about 18 and 24 years and the elderly are 
especially at risk from falls, whereas another type of acquired 
brain injury, for example, strokes, as we know, is more 
typically an illness of the elderly, though younger people can 
have strokes, as well, and this is generally focal brain 
injury. So there is an area of bleeding or an area of the brain 
that doesn't get oxygen. So that is a specific area of the 
brain is affected, but not the entire brain, unless, of course, 
there have been other things that have happened in the past to 
affect the rest of the brain. So that is an important 
distinction, both in the individuals and in the types of 
treatments which ensue from the ages and the types of brain 
injury.
    The other type that I mentioned would be anoxia or global 
lack of oxygen to the brain, and that is a more diffuse and 
catastrophic brain injury. So there is a broad range among 
those three.
    The Chairman. Thank you. I have some more technical 
questions on that, but because they are technical and they 
could put people to sleep, but are very important to our 
testimony, I will be asking you those in writing.
    Dr. Bernat, one controversy has been the distinction 
between the persistent vegetative state (PVS) which Mr. 
Turnbull said he would like a different name for, and I agree 
with him or minimally conscious state (MCS). Can you outline 
how you would make a differential diagnosis between PVS and 
MCS? What sort of radiological or other diagnostic evidence 
might a clinician use in these circumstances?
    Dr. Bernat. Thank you, Senator Enzi. I would agree with Mr. 
Turnbull that that is a poor term. I think those of us regret 
that our colleagues came up with this term 33 years ago when it 
was coined. But like many things, once it exists and it is 
used, it is hard to discard, but I certainly feel that that 
kind of a word has a derogatory sound to it. It certainly 
wasn't intended by those who coined it, but it can certainly be 
interpreted that way.
    Now, to answer your question about the clinical 
differential diagnosis between persistent vegetative state and 
minimally conscious state, the essential difference is that the 
minimally conscious state patient does show evidence of 
awareness. That is, they can follow commands. They can utter a 
few words. They can reach for objects. They do things that only 
people who are aware of themselves and their environment can 
do. Despite the fact that they have global brain damage, 
despite their severe disability and the fact that their 
responses are diminished, they show unequivocal evidence of 
awareness.
    So there is really all the difference in the world between 
those two states. Persistent vegetative state, zero evidence of 
any awareness. None of the behaviors of the patient suggest 
that they have any capacity of awareness, whereas the minimally 
conscious patient does show evidence of awareness.
    There is also a difference in testing. Senator Burr, when 
he was here, raised the question about a PET scan. There are 
studies that have been done on using PET scanning and 
functional MRI studies that can distinguish the features of 
persistent vegetative state from minimally conscious state. In 
a minimally conscious state, many of the language activation 
studies show widespread activation of networks of cortical 
neurons that are fairly normal and look like those of an aware 
patient, suggesting that the minimally conscious state patient 
may be quite conscious, whereas in the persistent vegetative 
state patient, there is no widespread activation of those types 
of networks.
    These tests are currently research tools. They have not yet 
developed the necessary standardization to be available 
clinically. They need to be tested. They need to be correlated 
with outcomes before we will use them clinically to rely on.
    The Chairman. Is MRI imaging useful in this, or is that a 
technology that doesn't apply?
    Dr. Bernat. Ordinary MR imaging or CT imaging looks at the 
anatomy of the brain. If there has been a devastating injury to 
the brain that happened some time ago, many months or years 
ago, we see the effect of that with severe shrinkage of the 
brain due to loss of brain cells. So the ordinary MRI and CT 
scanning can show that.
    But the tests that I was talking about are functional 
tests, that is, a functional MRI. The paradigm here is that you 
give some stimulus to the patient and you record over the brain 
to see if that stimulus evokes an activation of neurons, 
suggesting that it has some--looking for normal patterns of 
activation that would suggest that it is getting in, if you 
will. That is not an ordinary MRI. That is a so-called 
functional MRI, or FMRI. That one and the PET scan, which is an 
analogous functional imagining modality, are--those studies are 
now being done to try to investigate both the normal patterns 
of activation that are seen in people that have normal 
consciousness and awareness and then to map out the patterns 
that are correlated with the various abnormal patterns.
    Right now, they are not quite ready for prime time, but 
there does seem to be, even in the few patients that have been 
studied, that they can discriminate between the ones that have 
intact awareness from those that don't.
    The Chairman. Thank you. Mr. Turnbull, changing drastically 
here on the subject, do you have any particular recommendations 
for what people should be doing in respect to financial 
planning, what sorts of end-of-life or long-term care financial 
planning you could suggest? Do you think more individuals 
should be purchasing long-term care insurance, or are there 
other answers out there, other options or alternatives?
    Mr. Turnbull. Senator Enzi, certainly, long-term care 
insurance is something that is desirable if the family can buy 
it. It is expensive. It sometimes is out of reach for many 
families. It may not take into account the extraordinary costs 
of extraordinary people. It is a product tailored to a mass 
market, and people with intellectual disabilities and other 
disabilities may not be within that marketplace that is the 
basis for the policies. So I would encourage it, but I am 
cautious about its effectiveness.
    Second, with respect to the long-term care insurance and 
particularly the so-called discretionary or special needs 
trusts, I am also very cautious that those might be used as 
deemed assets which would then disqualify a Medicaid or a 
Medicare or other Social Security recipient from benefits.
    The best thing we can do is what I think most of us in this 
room do. We marshall our assets, both in the private and the 
public sectors. I am cautious about how we might proceed with 
respect to long-term care and special needs trusts.
    My next recommendation would be that every family has to 
keep records. At one point a year or so ago, I had to prove 
that my son had mental retardation. Well, he has had that since 
he was born at Johns Hopkins 37 years ago. In order to prove 
that, I had to haul a file cabinet over to the local Social 
Security office. Thank God I had kept the records. It seems to 
me very important that there be an easier administrative 
process for the families.
    I believe that predictability is one of the core values of 
the law, and for families and persons with disabilities to plan 
for their future, they must have the ability to reasonably 
anticipate and rely upon the predictability of programs that we 
currently have. I would say that even though I have been 
involved with the American Bar Association, there are still 
lawyers who do not have sufficient knowledge about how to 
structure their services to people with disabilities and their 
families. Further education of the Bar is important.
    And finally, I would think very strongly about reversing 
the bias that exists within Medicaid. The bias in Medicaid is 
pro-institutional. For 20-some-odd years, we have been 
reversing that bias bit by bit. I think now is the time for us 
to put our biases aside, our prejudices aside, and to make 
Medicaid not only a community-based biased program, but more 
than that, to examine whether, in fact, that program is 
becoming too narrowly medically modelized and not sufficiently 
a means for supporting a person in the community. It is not 
just a matter of how you do things on the private sector, but 
it is also very important that we respond to the self-
determination wishes of the families.
    Those are a few comments, Senator, and I appreciate your 
asking the question.
    The Chairman. Thank you. I have got to say, just a little 
diversion here, that on my way over to vote, I was on the 
subway with Senator Bunning, who also provided his thoughts. He 
had some personal instances that he wanted to share with me of 
some situations that fit in with the testimony that you are 
giving.
    Dr. Warden, I am going to shift gears here again. Could you 
please clarify when individuals with a brain injury are 
transferred to your center? Does it generally occur after a 
person has had an acute brain resuscitation and has stabilized, 
or do you have a chance to work with the person soon after the 
injury occurs? What advantages are there to being able to treat 
individuals with brain injury earlier in the process?
    Dr. Warden. Yes. Thank you. We often get patients--many 
patients are referred to Walter Reed Army Medical Center from 
Iraq currently through Landsduhl, and as I believe you are 
aware, there is really superb on-the-ground medical care and 
surgical care being provided in Baghdad and with very 
sophisticated transport. So by the nature of who we take care 
of, yes, we do receive patients after they have had acute care 
previously.
    We also function as part of a network of care between the 
military and the veteran and then community reentry program so 
that we can help facilitate movement through those different 
levels of need.
    So I think to your question, yes, it is very helpful to 
first identify problems, identify the brain injury, to assess 
the brain injury, and then to begin a treatment plan that can 
then be typically executed over multiple levels of care, always 
reassessing--multiple levels of care meaning acute, sub-acute, 
hopefully on into the community, and then reassessing how 
people are doing and their progress.
    The Chairman. Thank you. Shifting once again, Dr. Bernat, 
there has been little controversy over whether individuals who 
have had their nutrition and hydration withdrawn can feel pain. 
Although most of the medical community would assert that 
someone in a persistent vegetative state cannot feel pain, it 
has been reported that some patients in these circumstances 
should receive morphine to alleviate pain. Could you explain 
why clinicians may decide to prescribe morphine to someone with 
a diagnosis of a persistent vegetative state? What is the 
rationale for such a prescription?
    Dr. Bernat. To the fullest extent that we can tell, and I 
will qualify it with that to start, if someone is in a 
persistent vegetative state because they have an utter absence 
of awareness, that also means that they lack the capacity to 
feel, to experience pain, and that means to suffer as a 
consequence of that pain.
    Now, I already mentioned earlier that there is a biological 
limitation to our ability ever to know the experience of 
another person because we can't get inside someone's mind, but 
there is a consensus within the medical community that that 
statement I made is correct, assuming that the diagnosis of PVS 
was made correctly.
    Now, to get to your question, why would, in that setting, 
why would it be necessary, then, to administer morphine or 
other medications to someone in a persistent vegetative state 
who is dying, there are reasons that this is commonly done 
within hospices because--I would say there are two reasons.
    The first reason is that some family members still believe 
that the person has the capacity to feel pain and this is 
making certain that if that were the case, that that would be 
covered. There seems to be little harm in doing that. It is--
opiate treatment is commonly given to dying patients in hospice 
care, and if there is a concern about a family member, rather 
than saying, oh, well, don't worry about that, I think 
compassionate physicians would say, well, even though we feel 
it isn't essential, we will do this to put your mind at rest.
    It is the case that people in vegetative states do have 
certain movements. There are reflex movements. Some of those 
could be construed as representing evidence of suffering 
according to families, not according to the doctors. So it is 
basically addressing the emotional needs of the family and 
there seems to be little downside in doing so.
    The Chairman. Thank you. Dr. Schumacher, given that many 
individuals receive hospice care while they are dying and given 
that hospice care centers focus on providing adequate pain and 
symptom management, can you discuss in general what sort of 
pain and symptom management would be typical in hospice for 
someone who has opted to have his or her feeding tube removed? 
What pain and symptom management services do hospices provide 
in that kind of a scenario?
    Mr. Schumacher. Not being a medical doctor but a clinical 
psychologist, I can tell you what I have observed, having 
managed hospice programs for over 26 years. The identification 
of an opioid, morphine, is something that is oftentimes used to 
reduce, I think as Dr. Bernat said, more family distress or 
symptomatology than patients. Those patients are oftentimes 
very comfortable, very relaxed, and live the remainder of their 
days very, very peacefully.
    One of the things that I think is the trademark of hospice 
care, which people are especially--report especially fondly of 
after their loved ones have died is that the patient was cared 
for with a level of intensity that they oftentimes don't see in 
hospital settings, and that would include such things as mouth 
care, which is, for many individuals who are watching someone 
die, can be very, very difficult.
    So I think that the symptom management that hospice 
provides, one portion of it certainly would be making sure that 
there was an opiate on board should there be any distressing 
symptoms. But the whole focus of hospice is to treat all of the 
distressing symptoms of the patient and the family so that we 
engage in behaviors and support to that patient so the family 
is seeing that their loved one is being managed not only 
medically competently, but psychologically, spiritually, and 
socially very supported, as well.
    Many of the people that I have seen over the years that 
have not come into hospice, postdeath of the patient, will come 
into my office and say something like, ``No one told me my 
mother was dying. She did not receive not only good competent 
opioid support in the setting in which she was dying, but also 
the level of intensity of the staffing was not adequate to meet 
her needs, my mother's needs, as an example, and our family's 
needs, as well.''
    So hospice really does focus on the medical competency, the 
medical needs, the distressing symptoms that the patient 
experiences, but also the psychological support which long-
term, postdeath of the patient, oftentimes casts a very long 
shadow in the life of that family. And if they saw their mom or 
dad not only be in physical pain, but not getting the good 
hands-on care, mouth care, supportive care, and loving care 
that is the hospice trademark, those are the kinds of things 
that people do walk away remembering, either positively or 
very, very negatively.
    Mrs. Schiavo died in a hospice program where she received 
the best that humankind can offer, and that, I think, is 
something that is the hallmark of hospice care. We stay with 
our patients. We don't abandon our patients. We live within the 
letter of the law, as that program did, and provided to that 
individual what it was that she needed--to die comfortably.
    The Chairman. Thank you. Today we have talked about some of 
the most difficult, emotional things that we can possibly 
discuss.
    I do have some additional questions. I am sure that Senator 
Kennedy has some additional questions, and we will be 
submitting those to you and hope that you will respond to us.
    I really appreciate the level of expertise that we have 
here today and the information that you shared with us and the 
way that you shared it. It has been very helpful. So I thank 
all of you for your testimony and appreciate all the people 
that attended for their interest and attendance.
    We have raised a lot of critical issues for all families to 
discuss and address to ensure that individuals who cannot 
advocate for themselves are still able to guide their health 
care decisions. I hope this hearing and the information that 
comes out of it will provide further opportunity for a national 
dialogue about planning ahead both with the legal documents, 
such as advance directives and living wills (which I understand 
are escalating dramatically across the country). As an aside, I 
have talked to some attorneys who said that they are backed up 
through June now on writing those, as well as financial 
arrangements, which may include the purchase of long-term care 
insurance.
    As I mentioned, members of the committee can still submit 
questions and statements. We would appreciate a timely response 
to the questions. The record will remain open for an additional 
10 days for those questions and further statements from my 
colleagues and any expansion on your testimony that you would 
like to do.
    You have been very helpful. I appreciate it. Thanks for 
your participation.
    The hearing is now adjourned.
    [Additional material follows.]

                          ADDITIONAL MATERIAL

      Response to Question of Senator Enzi by J. Donald Schumacher
    Question. Dr. Schumacher, can you comment on why you feel as if 
Medicare and Medicaid should provide reimbursement for assisting 
families in making these determinations? Do you believe that physicians 
are the best individuals to be performing these consultations? Is the 
health care context the best setting for these familial discussions?
    Answer. Both Medicare and Medicaid health systems are appropriate 
mechanisms to afford a setting for the discussion of advance care 
planning for a variety of reasons. These health care delivery systems 
serve an ever increasing assortment of patients with serious and life 
limiting illnesses which will only undergo further expansion with the 
aging of the baby boomer generation. As the health care systems 
treating the elderly and poor, these systems are most likely to 
encounter the vast majority of our Nation's most vulnerable and fragile 
citizens.
    There are two goals of our Nation's health care delivery system 
that might be served by including such planning opportunities within 
the Medicare and Medicaid systems. First, and probably most important 
is the notion that the patient and family ought to be empowered with 
appropriate information so that they might make informed decisions 
about their health care options. Informed consent should not be viewed 
as the minimum necessary to gain the patient's signature on a printed 
form, but rather an expansive discussion about the range of options, 
probable outcomes, and an appreciation of the goals of treatment. Only 
with a knowledgeable patient may we have truly informed consent. Such 
discussions would help meet this goal.
    A second goal that would be served is the responsibility of health 
care providers to be good stewards of the Federal health care dollar. 
Such discussions would enable health care professionals to better 
understand the wishes and desires of their patients and avoid 
unnecessary procedures and futile treatments if their patients are more 
knowledgeable and better informed. It is important to note that these 
discussions with health care professionals are not intended to be one-
time events, but rather ongoing and regular conversations about health 
care choices, as they should be. Each health care event or crisis 
carries with it a series of issues that impact the decision making 
process and should be considered within the context of the patient's 
expressed wishes.
    By suggesting that Medicare and Medicaid are appropriate systems to 
provide a means to engage in such conversations, they should not be 
viewed as exclusive sources of information. As I mentioned in my 
testimony, these conversations also need to take place around the 
kitchen table with our family and friends, as well as with our legal 
advisors, and spiritual counselors. We need not only private 
conversations within families, but also a national conversation, to 
better understand the range of options that are available so that we 
can make clear expressions of our particular choices for our end of 
life care.
    Many patients, especially the elderly, put a great deal of trust 
and faith in their health care professionals and look to them for 
advice and counsel. It is in these settings that questions can be 
addressed about treatment options and the likely outcomes associated 
with particular courses of care. Physicians, and other health care 
professionals are well suited to assist in this exchange of information 
and decision making process. Inherent in this process is an assumption 
that the health care professionals are well equipped to facilitate the 
discussions and are able to provide the requisite information in an 
appropriate setting.
    The language of S. 347 should be expanded to also include members 
of the hospice interdisciplinary team as qualified providers of advance 
care planning information. These specially trained and experienced 
teams are particularly well suited to facilitate such discussions. A 
fundamental precept of hospice and palliative care is patient self-
determination and such skilled and trained professionals successfully 
fulfilled these goals for more than 1 million patients and families 
last year. By including such teams in the legislation, the patients and 
families would have the benefit of a physician, nurse, social worker 
and/or spiritual counselor, as well as other members of the hospice and 
palliative care team to facilitate a more well informed discussion of 
the range of choices and decisions that might be appropriate. 
Ultimately, the goal of this process is to better determine the 
patient's wishes and make sure that they are carried out.
    In addition, hospice team members, as part of their everyday 
practice, provide services in the patient's homes, assisted living 
facilities, long term care facilities, hospitals or wherever the 
patient may reside. Perhaps these settings are more comfortable or 
conducive for such discussions, but should not be considered the 
exclusive venue for the decision making process.
    The conversations and evaluations that are inherent parts of the 
legislation are complex and require a great deal of time on the part of 
the health care professionals. Patients and their families need 
sufficient time to spend with their health care professionals and the 
mechanism implementing such conversation needs to take into account the 
nature of the exchange and the amount of time that is required to 
adequately address the wide range of complicated issues that comprise 
such discussions.
    Response to Question of Senator Enzi by Deborah L. Warden, M.D.
    Question. Dr. Warden, is it possible for civilians to receive 
treatment at your center? If so, what is the process for that?
    In your testimony you referenced the high unemployment rate for 
people with a brain injury as well as specific individual's needing 
specific supports, such as job coaching. What other types of supports 
are available to assist people who work and live in the community? In 
your opinion, what types of supports or rehabilitation methods have 
been successful in helping people achieve these goals? I'm particularly 
interested in this, given that the Workforce Investment Act, and 
specifically title IV, the Rehabilitation Act of 1973 is to be 
reauthorized this year.
    Answer. FECA (Federal Employment Compensation Act) permits all 
civilian dependants, beneficiaries, Mil Ret, & Ret Veterans treatment 
in a MII/VA Hosp. Civilian DOD and Contractors are covered under the 
War Hazard Act in time of War. All civilians injured on site or near 
are allowed emergent care then transfer.

Problems With Return to Work After TBI

    The research literature documents extensive difficulties with 
return to work after TBI, particularly for individuals with moderate to 
severe injuries. Individuals with moderate injuries (GCS=9 to 12) have 
rates of return to work of 50-60 percent; while only 20-30 percent of 
individuals with severe injury (GCS-3 to 8) return to work (Levin et 
al., 1979; Brooks et al., 1987; McMordie et al., 1990). Individuals 
with mild injury (Glascow Coma Scale of 13 to 15) are usually 
reemployed after their injuries (60-85 percent at 1 year postinjury) 
and remain employed up to 15 years following injury (Dikman, Temkin, 
Machamer, et al., 1994; Schwab, Grafman, Salazar, et al., 1993, Edna 
and Cappelen, 1987; Fraser, Dikman, McLean et al., 1988, Colantonio et 
al., 2004). Stability of work postinjury has been found to be 
correlated with injury severity, age, and driving independence 
(Kreutzer et al., 2003). Fifty-six percent of active duty service 
members with Penetrating Head Injury from the Vietnam war were working 
15 years after injury, placing them in the range of moderately injured 
patients (Schwab et al., 1993).

Job Coaching

    The nature and consequences of the executive function deficits that 
are common after moderate to severe TBI provide a strong theoretical 
basis for the application of supported employment programs for TBI 
survivors that incorporate structure and supervision. The research 
literature also suggests that supported employment programs, including 
job coaching, may be helpful in increasing successful return to work 
for individuals after TBI (Chesnut, et al., 1999; Wehman et al., 1995; 
Wehman et al., 2003), thus providing empirical evidence in support of 
the theoretical considerations. Randomized studies have not been 
conducted that would provide definitive evidence, and various models of 
supported employment and approaches to job coaching have been proposed 
(Chesnut, et al., 1999). However, several large observational studies 
comparing individuals who received supported employment programs with 
individuals not provided supported employment (some received day 
treatment, others no treatment, or pre-employment vocational 
counseling, etc.) have shown better rates of return to work for 
individuals receiving supported employment (Malec, et al., 2000; 
Chesnut, et al., 1999). The selection of particular types of patients 
for these studies limits the generalizability of findings, but the 
studies suggest some patients clearly benefit. The success of these 
programs with severely injured TBI patients is particularly compelling. 
And, the programs appear to be cost effective, as additional earnings 
for individuals with TBI provided supported employment has been shown 
to exceed the costs of the program (Wehman P, Kregel J, Keyser-Marchus 
L., Sherron-Targett P, Campbell L, West M, Cifu DX, ``Supported 
employment for persons with traumatic brain injury: a preliminary 
investigation of long-term follow-up costs and program efficiency,'' 
Arch Phys Med Rehabil. 2003 Feb; 84(2):192-6.)

Evaluation of Existing Programs

    Wehman, et al. (2005) review existing programs designed to support 
and encourage work among TBI survivors. They list a wide variety of 
programs offered through Vocational Rehabilitation, Social Security 
Disability, Medicaid, etc. designed to promote and facilitate work 
among this population. The programs available are not widely utilized, 
partly because potentially eligible recipients do not know of their 
provisions. The authors recommend additional research on mechanisms of 
facilitating return to work among individuals with TBI, and an 
expansion in programs that have been shown in observation studies to 
help, and efforts to promote new approaches to work in the TBI 
population (such as Telework, business ownership, etc.).
    Work currently being done by the CDC on prevalence and incidence of 
TBI is extremely important to any consideration of treatment needs in 
TBI.
    Karen Schwab, Ph.D., Assistant Director of Epidemiology, Defense 
and Veterans Head Injury Program, assisted formulating these responses.
    Response to Questions of Senator Hatch by James L. Bernat, M.D.
    Question 1. Dr. Bernat, you said that new technologies such as PET 
scans and functional MRI's are used in research but not in clinical 
diagnosis. Could you please explain the difference?
    Answer 1. Only a few patients with persistent vegetative state 
(PVS) and minimally conscious state (MCS) have been studied using 
functional MRI (fMRI) and PET scanning. The results are quite 
interesting and seem to correlate well with the clinical features of 
the conditions. Thus, in PVS patients who appear to be totally unaware, 
the PET and fMRI shows failure to activate distributed neural networks 
following a variety of stimuli as expected in someone without 
awareness. By contrast, in MCS patients who are known to be aware, the 
studies show more normal patterns of activation of widely distributed 
neural networks after stimuli that are consistent with awareness. But 
these are research results. The tests are not available for general 
clinical use because we do not know how predictive these findings will 
be in prospective patients since too few patients have been studied to 
date. Until many more patients are studied, and we can obtain reliable 
and reproducible data, we cannot recommend the use in clinical 
situations to assist diagnosis. They just are not ready yet.

    Question 2. Do you agree with Mr. Turnbull that medical advances 
affect how much we should honor an individual's clear expressions 
regarding end of life decisions? Mr. Turnbull's statement: ``Congress 
should recognize that end of life decision making, however much it may 
be guided by various legal instruments or other reliable expressions of 
self-determination, is a dynamic process, and that people's conditions 
change with prompt, state-of-the-art treatment, and so do their and 
their families', other designated representatives', and health/medical 
caregivers' judgments about how much to honor the previously executed 
instruments or expressions of autonomy.''
    Answer 2. I agree with Mr. Turnbull's statement to a point. His 
statement raises a subtle issue that requires a careful explanation. 
Surrogate decision makers of incapacitated patients have the duty to 
try to reproduce the exact decision that the patient whom they 
represent would have made in the clinical situation in question. 
Therefore, when they are asked by the patient's physicians to consent 
to or refuse an offered therapy on behalf of the patient (including the 
artificial provision of hydration and nutrition), they must ask 
themselves if the patient would have wanted the therapy in question and 
consent for it only if the answer is yes.
    In making a treatment decision on behalf of a patient, the 
surrogate decision maker should consider several sources of 
information. From the physician, the surrogate learns the diagnosis and 
prognosis with and without the treatment in question. From the patient, 
the surrogate considers his knowledge of the patient's expressed 
wishes, including preferences expressed in written advance directives; 
what the surrogate can deduce from how the patient has lived her life; 
information contained in her letters and comments; and the patient's 
religious beliefs. Knowing the patient's values and preferences and 
thereby her health care goals, and knowing the patient's diagnosis and 
prognosis with and without treatment, the surrogate should attempt to 
reproduce the precise decision the patient would have made.
    A patient's wishes expressed in a written advance directive are a 
powerful source of information about the patient's true treatment 
preferences. Physicians usually assign great weight to a patient's 
written advance directive because it comprises her clearly expressed 
treatment wish. But in my experience as a physician caring for 
critically ill patients, and as an ethics consultant called for advice 
in ethically conflicted cases, I have encountered two situations in 
which I believed that the right course of action was to ignore the 
patient's previously written statement. Although these are admittedly 
exceptional circumstances, considering them helps illuminate the 
limitations of written directives.
    The most common exceptional circumstance is that in which the 
health status that comprised the context for a patient's previously 
written directive no longer exists, rendering the directive ambiguous. 
For example, suppose as a healthy and independent 72-year-old, Mrs. J 
indicated in a written directive that she wished to undergo 
cardiopulmonary resuscitation (CPR) if she suffered a cardiac arrest. 
She hoped to continue living many more independent years. Five years 
later Mrs. J suffered a large stroke rendering her paralyzed, unable to 
communicate, and requiring indefinite nursing home treatment. Her 
physician at the nursing home asked her surrogate if she would consent 
to CPR for Mrs. J in the event of cardiac arrest or if Mrs. J should 
have a Do-Not-Resuscitate (DNR) order. The surrogate was conflicted. On 
the one hand, everything she knew about Mrs. J told her that Mrs. J 
would want to have a DNR order in her present situation. Yet Mrs. J's 
previously executed advance directive directed her physician to 
administer CPR. What should be done? Clearly, the health context in 
which Mrs. J indicated she wanted CPR no longer exists. Having CPR now 
cannot achieve Mrs. J's overall health goals of independence. 
Therefore, Mrs. J's surrogate is right in ignoring her previous 
directive because she is upholding Mrs. J's more general treatment 
preferences.
    A second exception is when the patient does not understand the 
terms of a written directive she has signed. I have seen several cases 
in which elderly patients had previously completed detailed pre-written 
medical directive forms asking for treatment preferences in a variety 
of clinical scenarios. In some cases, there were striking 
inconsistencies in the preferences listed, such as a patient indicating 
under the general preferences that she did not wish to receive life-
sustaining treatment in the face of a terminal illness, and later in 
the same form indicating that she wished to undergo CPR if terminally 
ill. Subsequently, in the context of an ethics consultation, when I 
asked about these inconsistencies, the patient's adult children pointed 
out that their mother simply misunderstood the questions, and 
therefore, her signed directive should be ignored.
    In my opinion, if a surrogate makes a decision that contradicts a 
patient's previously written directive, this situation requires 
oversight by a hospital ethics committee to assure that the true wishes 
of the patient are being followed. A written directive serves as an 
important guide for surrogates and physicians. But most important is 
for a patient to identify a surrogate decision maker whom the patient 
knows and trusts, to communicate with that surrogate about the 
patient's health care goals and values, and to empower that surrogate 
to make decisions for the patient when the patient becomes 
incapacitated. Surrogates need guidance from the patient that includes 
written instructions. But the surrogate also needs the flexibility to 
respect and follow the patient's general health goals in previously 
unanticipated clinical situations, including the authority to override 
a previous written directive in exceptional circumstances that are 
strictly justified.
 Response to Questions of Senator Hatch by H. Rutherford Turnbull, III
    Question 1. Mr. Turnbull, in your written testimony, you said that 
Congress should recommit itself to the ADA principle of self-
determination. At the same time, you said that advances in medical 
treatment affect how much third parties should honor an individual's 
expressions regarding end of life decisions, apparently no matter how 
clear or reliable those expressions are. I'd like you to address what 
might appear to be tension between these two ideas.
    Answer 1. The Schiavo case has drawn people's attention to the 
issues surrounding living wills. Individuals may also execute various 
powers of attorney, including health powers of attorney. Together, 
these instruments should be sufficient to guide care-givers in end-of-
life decision making, particularly under two circumstances. The first 
is that the individual executing them continually updates them to take 
into account changes in medical technology and changes in his or her 
views concerning life, dying, and death. The second is that the 
instruments are consistent with the person's understanding about 
technology, life, dying, and death as verbally expressed to the 
individual's family, friends, physicians, and other caregivers. Any 
Federal technical assistance about end-of-life decision-making must 
headline the importance of current instruments that are consistent with 
each other and with other expressions of an individual's autonomy.

    Question 2. Mr. Turnbull, you said that Federal intervention is 
warranted in cases meeting certain criteria. Accepting those as 
legitimate criteria for the moment, I'm wondering what you mean by 
``intervention'' and what you believe the legal or constitutional basis 
for the Federal Government's intervention might be?
    Answer 2. The nature of any Federal intervention is a matter for 
exceedingly careful and unrushed deliberation. I reaffirm, however, the 
three grounds for intervention, and the principles guiding Federal 
intervention, as set out in my testimony. I did not address the 
constitutional issues involving federalism and separation of powers. 
These are matters on which Congress must seek the counsel of 
constitutional-law experts; predictably, there will be various and 
probably conflicting opinions about the constitutionality of Federal 
intervention. I prefer to defer to individuals more expert than I on 
constitutional law and Federal intervention in end-of-life matters.

    [Whereupon, at 10:54 a.m., the committee was adjourned.]