[Senate Hearing 109-80]
[From the U.S. Government Publishing Office]
S. Hrg. 109-80
HEALTH CARE PROVIDED TO NON-AMBULATORY PERSONS
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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
__________
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Pensions
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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
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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.]