<DOC>
[109th Congress House Hearings]
[From the U.S. Government Printing Office via GPO Access]
[DOCID: f:23407.wais]
FEDERAL HEALTH PROGRAMS AND THOSE WHO CANNOT CARE FOR THEMSELVES: WHAT
ARE THEIR RIGHTS AND OUR RESPONSIBILITIES?
=======================================================================
HEARING
before the
SUBCOMMITTEE ON CRIMINAL JUSTICE,
DRUG POLICY, AND HUMAN RESOURCES
of the
COMMITTEE ON
GOVERNMENT REFORM
HOUSE OF REPRESENTATIVES
ONE HUNDRED NINTH CONGRESS
FIRST SESSION
__________
APRIL 19, 2005
__________
Serial No. 109-68
__________
Printed for the use of the Committee on Government Reform
Available via the World Wide Web: http://www.gpoaccess.gov/congress/
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COMMITTEE ON GOVERNMENT REFORM
TOM DAVIS, Virginia, Chairman
CHRISTOPHER SHAYS, Connecticut HENRY A. WAXMAN, California
DAN BURTON, Indiana TOM LANTOS, California
ILEANA ROS-LEHTINEN, Florida MAJOR R. OWENS, New York
JOHN M. McHUGH, New York EDOLPHUS TOWNS, New York
JOHN L. MICA, Florida PAUL E. KANJORSKI, Pennsylvania
GIL GUTKNECHT, Minnesota CAROLYN B. MALONEY, New York
MARK E. SOUDER, Indiana ELIJAH E. CUMMINGS, Maryland
STEVEN C. LaTOURETTE, Ohio DENNIS J. KUCINICH, Ohio
TODD RUSSELL PLATTS, Pennsylvania DANNY K. DAVIS, Illinois
CHRIS CANNON, Utah WM. LACY CLAY, Missouri
JOHN J. DUNCAN, Jr., Tennessee DIANE E. WATSON, California
CANDICE S. MILLER, Michigan STEPHEN F. LYNCH, Massachusetts
MICHAEL R. TURNER, Ohio CHRIS VAN HOLLEN, Maryland
DARRELL E. ISSA, California LINDA T. SANCHEZ, California
GINNY BROWN-WAITE, Florida C.A. DUTCH RUPPERSBERGER, Maryland
JON C. PORTER, Nevada BRIAN HIGGINS, New York
KENNY MARCHANT, Texas ELEANOR HOLMES NORTON, District of
LYNN A. WESTMORELAND, Georgia Columbia
PATRICK T. McHENRY, North Carolina ------
CHARLES W. DENT, Pennsylvania BERNARD SANDERS, Vermont
VIRGINIA FOXX, North Carolina (Independent)
------ ------
Melissa Wojciak, Staff Director
David Marin, Deputy Staff Director/Communications Director
Rob Borden, Parliamentarian/Senior Counsel
Teresa Austin, Chief Clerk
Phil Barnett, Minority Chief of Staff/Chief Counsel
Subcommittee on Criminal Justice, Drug Policy, and Human Resources
MARK E. SOUDER, Indiana, Chairman
PATRICK T. McHenry, North Carolina ELIJAH E. CUMMINGS, Maryland
DAN BURTON, Indiana BERNARD SANDERS, Vermont
JOHN L. MICA, Florida DANNY K. DAVIS, Illinois
GIL GUTKNECHT, Minnesota DIANE E. WATSON, California
STEVEN C. LaTOURETTE, Ohio LINDA T. SANCHEZ, California
CHRIS CANNON, Utah C.A. DUTCH RUPPERSBERGER, Maryland
CANDICE S. MILLER, Michigan MAJOR R. OWENS, New York
GINNY BROWN-WAITE, Florida ELEANOR HOLMES NORTON, District of
VIRGINIA FOXX, North Carolina Columbia
Ex Officio
TOM DAVIS, Virginia HENRY A. WAXMAN, California
J. Marc Wheat, Staff Director
Michelle Gress, Counsel
Malia Holst, Clerk
Tony Haywood, Minority Counsel
C O N T E N T S
----------
Page
Hearing held on April 19, 2005................................... 1
Statement of:
Coleman, Diane, president, Not Dead Yet; Bob Sedlmeyer, Fort
Wayne, IN; Kate Adamson, Redondo Beach, CA; and Robert
Destro, professor, Columbus School of Law, the Catholic
University of America...................................... 40
Adamson, Kate............................................ 67
Coleman, Diane........................................... 40
Destro, Robert........................................... 75
Sedlmeyer, Bob........................................... 62
Weldon, Hon. Dave, a Representative in Congress from the
State of Florida........................................... 10
Young, Dr. Donald A., Deputy Assistant Secretary, Planning
and Evaluation, Department of Health and Human Services.... 22
Letters, statements, etc., submitted for the record by:
Adamson, Kate, Redondo Beach, CA, prepared statement of...... 69
Coleman, Diane, president, Not Dead Yet, prepared statement
of......................................................... 43
Sedlmeyer, Bob, Fort Wayne, IN, prepared statement of........ 65
Souder, Hon. Mark E., a Representative in Congress from the
State of Indiana, prepared statement of.................... 4
Weldon, Hon. Dave, a Representative in Congress from the
State of Florida, prepared statement of.................... 13
Young, Dr. Donald A., Deputy Assistant Secretary, Planning
and Evaluation, Department of Health and Human Services,
prepared statement of...................................... 25
FEDERAL HEALTH PROGRAMS AND THOSE WHO CANNOT CARE FOR THEMSELVES: WHAT
ARE THEIR RIGHTS AND OUR RESPONSIBILITIES?
----------
TUESDAY, APRIL 19, 2005
House of Representatives,
Subcommittee on Criminal Justice, Drug Policy, and
Human Resources,
Committee on Government Reform,
Washington, DC.
The subcommittee met, pursuant to notice, at 2 p.m., in
room 2154, Rayburn House Office Building, Hon. Mark Souder
(chairman of the committee) presiding.
Present: Represenatives Souder, Cummings, McHenry, Norton,
Brown-Waite, and Watson.
Staff present: J. Marc Wheat, staff director and chief
counsel; Michelle Gress, Counsel; David Thommason and Pat
Dequattro, congressional fellows; Melia Holst, clerk; Tony
Haywood, minority counsel; and Jean Gosa, minority assistant
clerk.
Mr. Souder. The subcommittee will now come to order.
Good afternoon and thank you all for being here for this
important hearing. A special thank you to our witnesses, some
of whom have traveled a great distance and all of whom are
going to give us the benefit of their knowledge and experience
today.
The hearing today is ``Federal Health Programs and Those
Who Cannot Care for Themselves: What are Their Rights and Our
Responsibilities?'' We hope to examine the report provided by
the Federal Medicaid and Medicare programs for the ordinary
care of incapacitated citizens who are not in the dying
process. The people we are talking about as incapacitated
citizens cannot speak for themselves and cannot care for
themselves. They necessarily require long term care of family,
community or institutions to live.
Although there are provisions within Medicare and Medicaid
that address advanced medical directives of such individuals,
the provisions do not address many issues surrounding the
ordinary care of incapacitated individuals.
These are issues that have been raised in light of the
tragic Terri Schiavo situation and which now deserve our
focused attention and exploration. First among these issues is
whether, in the absence of some sort of advanced medical
directive or express medical power of attorney, there should be
a Federal presumption in favor of life so that a Medicare or
Medicaid patient who is incapacitated is not denied ordinary
care such as hydration and nutrition without due process and
full exercise of their rights as human beings to fight their
incapacity.
This is our point of departure and although we may leave
here with more questions than answers today, it is important to
examine what types of treatment options are available for
incapacitated citizens who are not in the dying process,
whether the various legal instruments such as advanced medical
directives or medical powers of attorney are sufficient and
what protections exist for incapacitated individuals to ensure
that their Constitutional rights of due process are met.
At a minimum, our Federal programs should protect patients
rather than pave the way to hasten their death but we do not
have a Federal presumption where a person's wishes are unknown
and unknowable. This creates a vacuum where someone else may
determine that a patient's life is not one worth living and
this is most definitely a slippery slope.
Let me quote at length a homily given by Archbishop Galen
which underlines the importance of staying vigilant against new
developments in the law that run counter to a Judeo-Christian
understanding of human dignity. ``If you establish and apply
the principle that you can kill unproductive human beings then
woe betide to all of us who become old and frail. If one is
allowed to kill unproductive people, then woe betide the
invalids who have been used up, sacrificed or lost their health
and strength in the productive process. Poor people, sick
people, unproductive people, so what? Have they somehow
forfeited the right to live? Do you, do I have the right to
live only as long as we are productive? Nobody would be safe
anymore. Who could trust his physician? It is inconceivable
what deprived conduct, what suspicion would enter family life
if this terrible doctrine is tolerated, adopted and carried
out.''
Archbishop Clemmons Von Galen was not speaking out as a
consequence of the Terri Schiavo controversy. He anticipated
it. Archbishop Clemmons Von Galen spoke these words from the
pulpit on August 3, 1941 against a euthanasia program being
instituted by the German government. The sermon was aimed at a
specific policy and a specific time and place but he touched
upon a recurrent theme that transcends place and time. It is a
helpful warning from history to guide our footsteps on our
uncertain post-Schiavo path.
We have a variety of witnesses joining us today to help us
with some of these important issues. Our first panel consists
of Representative Dave Weldon of the 15th district of Florida.
Congressman Weldon is an esteemed former member of the
Government Reform Committee and former chairman of the Census
Subcommittee of this committee. Congressman Weldon is also a
medical doctor and brings his unique perspective and experience
on Federal health care matters to this hearing today.
Our second panel consists of Dr. Donald Young, Deputy
Assistant Secretary for Planning and Evaluation, Department of
Health and Human Services who in his medical practice has
firsthand experience with end of life care.
Our third and final panel consists of four witnesses: Diane
Coleman, president and founder of a disability advocacy rights
group called Not Dead Yet; Bob Sedlmeyer from my congressional
district in Indiana. Bob has a 19-year-old daughter, Valerie,
who has been incapacitated since birth and for whom Bob and his
wife, Cheryl, provide in-home care. Kay Adamson has had a
severe stroke and experienced what is known as ``locked-in
syndrome.'' Although she was conscious and aware, she was
physically, totally unresponsive. At one point, her doctors
withdrew all nutrition and hydration from her. Last, we have
Professor Robert Destro from the Columbus School of Law at the
Catholic University. He served for 6 years as a commissioner
with the U.S. Commission on Civil Rights and led the
Commission's discussions in the areas of discrimination on the
basis of disability.
I would like to yield to our distinguished ranking member,
Mr. Cummings of Maryland, for an opening statement.
[The prepared statement of Hon. Mark E. Souder follows:]
<GRAPHICS NOT AVAILABLE IN TIFF FORMAT>
Mr. Cummings. Thank you very much, Mr. Chairman.
One of the responsibilities I take most seriously as a
legislator involves protecting the interests of the most
vulnerable segments of our society. Individuals who are
incapacitated by reason of illness, injury, birth defect or
advanced age are among those whose rights and interests we must
be most vigilant in protecting.
Decisions affecting a patient's course of medical treatment
are, of course, among the most personal and consequential
decisions that a person can make or that can be made on a
person's behalf. When a person cannot make such decisions on
his own, society must do what it can to ensure that the
decision is made in the best interest of the patient's health
and/or in accordance with the patient's own wishes and legal
rights.
In some instances these interests can be difficult to sort
out, particularly when it comes to deciding whether to provide
or withhold life sustaining treatment for a severely
incapacitated person who stands no realistic chance of
improving.
The Supreme Court has made it clear that a person has a
Constitutional right to refuse life sustaining treatment if
that is what he or she wishes. In the absence of a clear
advanced directive or living will document, however,
determining what a patient who cannot communicate would want
can give rise to an awful dilemma for the family or guardian of
the patient.
We all witnessed this in the controversial case of Terri
Schiavo and perhaps many of us have faced this kind of decision
in our own families. Certainly there can be few decisions more
grave or heart wrenching for a family to confront whether or
when to give up on the life of a loved one who may be a shadow
of his or her former self or for whom the medical outlook is
terribly grim or bleak.
For that reason, I think the Schiavo case teaches us that
the most constructive approach we can take as policymakers is
to help families to avoid such dilemmas by encouraging the use
of living wills and by educating members of the public about
their rights to elect or to refuse life sustaining treatment
should they become severely incapacitated.
According to a 2002 study funded by the Robert Wood Johnson
Foundation, only 15 to 20 percent of Americans have living
wills. That is why I am an original co-sponsor of legislation
that will be introduced in the House by Representative Sander
Levin of Michigan, the ``Advanced Directives Improvement and
Education Act of 2005'' co-authored with Senator Bill Nelson of
Florida which would ensure that a person's advanced directive
is known and respected, that a person can obtain professional
advice in preparation of such a directive, and that the
information on State laws is broadly available to those who
wish to exercise their rights.
While I supported the Schiavo bill, I think the best role
for Congress to play in moving forward is to empower our
citizens to make these crucial decisions with adequate planning
and forethought. Moreover, Congress should give thorough and
deliberate consideration to any changes we might contemplate
making to the existing system.
There can be no easy or painless answer in an end of life
decision scenario. We can make it easier for families to be
sure that the rights and wishes of their loved ones are honored
and protected when tragic circumstances give rise to so awful a
predicament.
That said, Mr. Chairman, we all know there are many
perspectives and many factors, both legal and moral to consider
when it comes to how we formulate policy on caring for those
who lack or lose the ability to care for or make decisions for
themselves. We will hear some of those perspectives today and I
look forward to the testimony of each of our witnesses.
With that, Mr. Chairman, I yield.
Mr. Souder. Thank you.
We have been joined by the vice chairman of the
subcommittee, Mr. McHenry of North Carolina.
Mr. McHenry. Thank you.
I would like to first thank all of our witnesses today. I
look forward to hearing or reading your testimony. Thank you,
Congressman Weldon, for being here as a medical expert. We
certainly appreciate your leadership on this tough and
important issue.
Today, we will be examining the support given by Medicaid
and Medicare programs for the ordinary care of citizens who are
incapacitated but are not dying. That is the key distinction we
are looking at, these individuals who are not dying and whose
rights must be protected. The incapacitated cannot speak for
themselves but as citizens they have the same right to life as
you and I, rights guaranteed by the Constitution. People who
are incapacitated require long-term care provided by family,
community and medical institutions in order to survive.
Medicare and Medicaid do not address many of the issues
surrounding the ordinary care these helpless people need to
survive. This is an issue that recently came to light through
the tragic death of Terry Schiavo. We need to fill in the gaps
in the current Medicare and Medicaid system so that in the
future no one else must suffer like Ms. Schiavo and the
Schindler family.
First among these issues is whether there should be a
Federal presumption in favor of life in the absence of an
advanced medical directive or express medical power of
attorney. This was the crux of the situation involving Ms.
Schiavo, an individual who was incapacitated, but in many
medical opinions, was not dying and where there was medical
uncertainty as to her wishes due to the lack of an advance
medical directive or power of medical attorney. A presumption
in favor of life would ensure that a Medicare or Medicaid
patient who was incapacitated like Ms. Schiavo, is not denied
ordinary care such as hydration or nutrition without the due
process that is guaranteed all citizens including those on
death row.
This is a very complicated issue, made more difficult by
the fact that State laws are inconsistent and there is
currently no Federal provision to resolve these conflicts.
However, we must work through these areas of confusion to
examine three things: first, the various treatment options
available to incapacitated citizens who are not dying; second,
if the legal instruments meant to protect them are sufficient;
and three, whether there are enough legal protections to ensure
that the Constitutional right to due process of capacitated
individuals is met.
Currently, there is no Federal presumption when a person's
wishes are unknown. I believe that in such situations where
there is a legitimate due process question, we must always side
on the side of life. Life or death is the most important
question and the most important decision. As such, it must not
be made for someone else when there is even the slightest
possibility of doubt as to their wishes. Human life must be
protected.
We are very fortunate today to have four wonderful panels
that will take on these questions and many others. I look
forward to hearing this discussion, Mr. Chairman.
Mr. Souder. Ms. Norton, do you have an opening statement?
Ms. Norton. I am sorry I won't be here for much of this
hearing, I have two other hearings going on at the same time. I
am intrigued that the Criminal Justice Subcommittee would be
having this hearing today. I am trying to fathom that in light
of the areas in which you have traditionally concentrated.
I certainly don't have any objection to the hearing. I
think the Schiavo case raises issues that ought to be discussed
in precisely this kind of setting as opposed to a setting
forced upon us in the past.
I very much regret, though, that this hearing did not
become the opportunity as well to correct some of the
impressions that were left in the wake of the Schiavo hearings.
It questions the maligning of compassionate care at the end of
life by hospices by members and others repeatedly talking about
people being starved to death and people being deprived of
water to their death when you don't have to be a professional
to understand that hospices are embraced by Americans precisely
because they help people avoid a painful death. They are
regulated by the States, sharply regulated. I thought they did
a huge disservice to allow stand. It would have been good to
have someone here to speak to that issue.
It would have been good if we were going to have this
hearing to have some witness come forward to testify about
living wills. Everywhere I go people virtually come up to you
and say, make sure I have told you, now you know it and most of
them are saying they don't want to continue to live under those
circumstances but the point is, and perhaps one of the most
important points driven home by the Schiavo case is the living
will point. I would like to know more about that as long as we
are having this hearing. I regret there is no witness who can
testify as to that.
Finally, I regret that there is not some expert there who
could tell us the extent to which, and it is a huge extent, of
families making precisely the decision that the Schiavo family
made with respect to Terri. That is to say every day of the
week, feeding tubes, if you will, are given up because either a
court intervenes or because the family makes that decision. No
family would ever make that decision if a dying person starved
to death and experienced starvation or if a dying person
experienced the need for water and was denied it. When
virtually the entire neurological profession said that those
feelings were impossible in a woman whose brain had dissolved
to the extent that her brain had dissolved, it seems to me that
the kind of fairness you are known for in this hearing would
have required some witnesses to come forward to speak to at
least some of those issues which are also involved.
I note and I asked when I came in were there any other
witnesses and they said there was a witness that could not
attend and that the minority was given but I just raise these
issues because I think the kind of discussion you have started
here is an important one and I congratulate you for starting
it. That is exactly what we need but I think we need to have
all the elements brought into the discussion and they do not
seem to be included in the witness list.
I have two other hearings going on, literally, important
hearings and I cannot stay for this hearing but I certainly
have staff here so that I can begin to understand whether some
of these issues were discussed.
I thank you again, Mr. Chairman, for starting this
discussion in the Congress, a vital discussion indeed.
Mr. Souder. Thank you and if you could briefly explain the
process of how this happened. At the beginning of this session,
the Department of Health and Human Services was moved to our
committee. As the gentlelady knows and everybody here, we can
barely cover all the other things that we are covering but we
start to occasionally have hearings in the Department of HHS
along with the full committee, for example, the COX2 inhibitor
hearings are going to be in the full committee and occasionally
those hearings will be there and occasionally in this
subcommittee.
Ordinarily, this was going to be a full committee hearing.
They asked to move it to the subcommittee and at my request, we
have tried to have it not focused just on the Terri Schiavo
case where it was originally headed and try to look at the
issue from a broader perspective and hopefully not only this
committee but others will look at it in many of the ways and
aspects that you raise.
Congresswoman Brown-Waite, do you have an opening
statement?
Ms. Brown-Waite. Yes, I do.
I want to thank you very much for calling this hearing on
how to best protect the rights of those who cannot care for
themselves, including the terminally ill and those Americans
who are incapacitated but not in the dying process.
The controversy surrounding the death of Terri Schiavo hit
close to home for all of us. One lesson we can take from her
passing is the importance of creating a living will and
completing a health care surrogate form. These forms make a
person's wishes clear and ensure they are clearly documented
and legally binding.
I have agreed to co-sponsor House Resolution 217 which is a
bi-partisan resolution encouraging all Americans to set forth
their medical wishes through a living will. By drafting a
living will, individuals are able to ease the burden placed on
their loved ones by making serious medical decisions before
they are incapacitated or unable to articulate their wishes to
medical personnel.
This oversight hearing also seeks to examine the Federal
role in decisions relating to long term care of incapacitated
Americans that rely on Medicare and Medicaid programs. The
proper role of the Federal Government in these situations
presently is not clear. We must, however, be very careful that
we are not usurping any family decisionmaking given the
importance of this issue raised by recent events.
I thank the chairman for holding this hearing today and I
look forward to our discussions and hearing from our very
capable witnesses.
Thank you and I yield back the balance of my time.
Mr. Souder. Before proceeding, I would like to take care of
a couple of procedural matters. First, I ask unanimous consent
that all Members have 5 legislative days to submit written
statements and questions for the hearing record and the answers
to written questions provided by the witnesses also be included
in the record. Without objection, so ordered.
I also ask unanimous consent that all exhibits, documents
and other materials referred to by Members and the witnesses
may be included in the hearing record, that all Members be
permitted to revise and extend their remarks. Without
objection, so ordered.
If there is a Member of the House or Senate who is
testifying, they are always the first panel. It is customary to
ask all our witnesses to testify under oath but as Members of
Congress, we take that oath at the beginning of the year.
Our first panel is Dr. Dave Weldon.
Dr. Weldon. I would be very happy to take the oath again,
Mr. Chairman, if you would like.
Mr. Souder. Our first panel is Dr. David Weldon, a Member
of the House of Representatives. Thank you and we would welcome
your opening statement at this time.
STATEMENT OF HON. DAVE WELDON, A REPRESENTATIVE IN CONGRESS
FROM THE STATE OF FLORIDA
Dr. Weldon. I am delighted to be here, Chairman Souder, and
Ranking Member Cummings and members of the committee. I
appreciate the opportunity to testify before the subcommittee
and to discuss the issues surrounding the rights of the
disabled, our responsibilities to protect the disabled in end
of life decisions and the nexus of Federal health programs with
regard to protecting vulnerable adults.
As you know, I introduced H.R. 1151, legislation designed
to give greater legal scrutiny to incapacitated individuals in
situations like that of Terri Schiavo to ensure that before
their life is ended by depriving of necessary fluids and
nutrition, a final review be granted through the Federal
courts.
I want to thank you, Mr. Chairman, as well as the ranking
member and Mr. Danny Davis of the committee for co-sponsoring
that legislation. In addition, I am thankful to the broad
spectrum of support we received on this issue from such people
as the Reverend Jesse Jackson, Ralph Nader, Nat Hentoff and
many others.
This issue we are about to discuss today transcends party
labels. By introducing H.R. 1151, I was attempting to address
the deficiencies of a system that advocates starvation and
dehydration of those who are dependent on others for their
care. While many have taken from the Terri Schiavo a heightened
interest in living wills, I believe it would be wise for us to
broaden that discussion beyond legal documents.
I was shocked to learn in a recently released report that
80 percent of States now allow doctors and hospitals to
controvert the express wishes of individuals in those legal
wills and advance directives. The problem goes deeper than not
having the proper forms. That same report goes on to say that
``Increasingly health care providers who consider a patient's
quality of life too low are denying life preserving measures
against the will of patients and families and the laws of most
States provide no effective protection against this involuntary
denial.''
I encourage this committee to look at and consider
deficiencies that exist in Federal laws that set conditions for
participation in the Medicare and Medicaid programs and how
essential care such as food and fluids are being dispensed.
Medicare considers the provision of food and fluids through a
feeding tube as a prosthetic medical intervention. Yet, the
enforcement of this requirement is clearly lacking.
To address this weakness, I believe it is imperative to
create a substantive standard addressing when food and fluids
can be withdrawn to ensure that the rights of incapacitated
individuals are not violated. In my view, that standard would
presume that vulnerable adults would want to be fed and given
fluids unless they had expressly expressed otherwise. It is
important that we err on the side of providing this type of
care in the absence of an explicit written directive and that
the Federal standard be expressed clearly to all health
providers.
Our legal system is weighted very heavily toward ensuring
that we do not convict the wrong person and we are improving
upon this system every day, as an example with the addition of
DNA evidence in particular. Should we not also as a society err
on the side of preserving the life of an incapacitated
individual? Incapacitation is not something any of us would
choose but to bring about an end to that condition based on
hearsay or anecdotal evidence should not be sufficient in the
eyes of any court or legislative body. The lack of a standard
that says we ought not starve incapacitated persons to death is
in part the result of a chilling trend that substitutes
utilitarian judgments of medical ethicesis for the minimal care
and compassion required to simply feed someone and provide them
with water.
This march toward redefining humanity and classifying the
incapacitated as non-persons is a dangerous step that strips
the most vulnerable of the founding principles on which this
country was founded. We must be careful as a Nation not to
travel down the perilous path of nations that have treated
those with disabilities including those with severe brain
damage as less than whole persons. History has not judged
favorably those societies.
The utilitarian trend plays into the epidemic of elder
abuse and neglect occurring in many long term care facilities
around America. What is needed is accurate data and information
about gaps in detection, investigation and intervention into
the neglect and exploitation of vulnerable and incapacitated
adults wherever it may occur.
With this committee's assistance, it is my desire to
introduce legislation that would address the needs and
deficiencies I have cited by one, establishing a clear,
substantive standard regarding basic care such as food and
water; two, initiate an appropriate study to clearly identify
areas of neglect and abuse that our vulnerable and
incapacitated adults and children face today; and three, to
establish a Federal presumption in our Medicaid and Medicare
programs that fluid and food will not be denied absent an
explicit wish to the contrary.
Mr. Chairman, these past few weeks have shown us that what
we may have considered normal, appropriate care for
incapacitated individuals, namely the provision of food and
fluids, is now being challenged. Congress must step up to this
challenge and be prepared to affirm the full protections and
rights of every American but most especially those dependent on
others. Let it not be said that we ignored so important a
value.
Thank you for your interest in this subject. I would be
very happy to field any questions you or the others may have.
[The prepared statement of Hon. Dave Weldon follows:]
<GRAPHICS NOT AVAILABLE IN TIFF FORMAT>
Mr. Souder. Let me read a statement from the U.S.
Conference of Catholic Bishops and if you could react to this
as a doctor, I would appreciate it. They said, ``We reject any
omission of nutrition and hydration intended to cause a
patient's death. We hold for the presumption in favor of
providing medical assisted nutrition and hydration to patients
who need it which presumption would yield in cases where such
procedures have no medically reasonable hope of sustaining
life, propose excessive risk or burdens.'' Practically
speaking, as a doctor, how is a decision reached that a
procedure has ``no medically reasonable hope of sustaining life
or pose excessive risk or burdens?'' Should those
considerations override Federal presumptions to support
nutrition and hydration?
Dr. Weldon. That statement from the Catholic Bishops, I
have seen and, it is probably one of the most thoughtful
statements on this issue that I have read. These issues are
very, very tricky and as I said on multiple occasions during
the controversy surrounding the Terri Schiavo case, there were
instances where I withdrew food and fluids. An example would be
dealing with somebody who was very elderly and perhaps somewhat
disabled with failing health, multiple medical problems, say
they had an underlying heart or lung condition and then
developed another complication and would have say a massive
stroke. They would be in the hospital and we would get into
these issues. It is a very fine line and requires very skilled
and experienced judgment when you are crossing over the edge
where you are no longer preserving life but you are now
prolonging the dying process. In that circumstance, I would
sometimes either not initiate food and fluids or if they had
already been initiated on occasions I would stop them. Of
course this was after full and detailed consultation with
family members.
In that statement, the Catholic bishops have a presumption
that you will give food and fluid but they go on to qualify
that which presumption would yield in cases where such
procedures have no medically reasonable hope of sustaining life
or pose excessive risk or burden and that is the kind of
circumstance I was talking about, somebody who was clearly in
the process of passing away and what would otherwise be a
process that might take 2 or 3 days, it can be viewed as
inhumane to drag that out over weeks or months.
I don't think the Terri Schiavo case fit that description I
am describing to you at all. I think it was a very, very
different circumstance. Any change in Federal regulations
involving the Medicare and Medicaid programs have to take these
kinds of nuances into consideration. If we are going to
establish a standard that food and fluids will be a
requirement, it has to be caveated in such a way that it allows
for professional judgment in situations where you are not
prolonging life, you are actually prolonging the dying process.
As well, obviously any change in Federal laws or
regulations have to take into account any advance directives
that the patients may have put forward.
Mr. Souder. You have been involved in variations of this
issue since you have been in Congress. Have you seen HHS take
any intervention, set any guidelines and is your bill trying to
address some of that?
Dr. Weldon. I have not personally seen any HHS directive,
but I believe you have a witness from HHS coming forward. The
trend I am concerned about and why I think it is appropriate
for us to intervene in this situation is 10 years ago, 15 years
ago, you would often have families wanting to withdraw food and
fluid in what was perceived as a helpless situation and you
would have health care providers who were not comfortable with
that decision and wanted to continue to administer food and
fluid. Some of those cases ended up in court and I believe the
Karen Quinlan case fell into that category.
Now what you are actually seeing in the health care
delivery system is circumstances where either you have no
advance directive or you have stated directives from the
patients to have food and fluid and sometimes actually written
directives as the report I cited to you stated, family members
who are wanting it and health care providers who are saying the
quality of life here is insufficient to justify this and they
are unilaterally withdrawing food and fluids over the
objections of patients and family members and there is no
standard in many States in law to basically contravene any of
this.
Mr. Souder. Mr. Cummings.
Mr. Cummings. As I was listening to you, I could not help
but think about the many people who called my office with
regard to the Schiavo case and many of them very emotional. I
have never seen anything like it. These were people who felt
that for the most part they should just let her pass away. The
interesting thing is a lot of them had been through the
experience.
I think it is so sad that this has gotten so tangled up in
politics. Different people have different perspectives. I was
hoping this hearing would put the politics aside, which I think
we are trying to do, and try to address what you just said.
Listening to what you just said, it kind of makes me understand
how it could get so emotional because what you just said to me
is a pretty complicated, individual kind of decision. I heard
what you said, instead of prolonging life, you are prolonging
death. I take it doctors can disagree or agree on that? Is that
reasonable to believe? I don't know, I am asking you. Is that
the standard and how do you codify that? Do you follow me?
Dr. Weldon. Absolutely. Let me share with you, politicians
aren't the only people who disagree on issues and doctors
frequently caring for patients will disagree on treatments and
interventions. What I had seen 10 and 15 years ago was a
tendency, and I think some of this grew out of concern for
litigation, that a lot of doctors would just throw technology
at anybody and everybody and put lots of people who shouldn't
have been put on life sustaining modalities, on them and you
would frequently have patient family members coming forward and
saying, no, we don't want this.
The trend now seems to be actually in the opposite
direction which is I think beyond the Schiavo case, for the
Congress actually looking at this. People against their written
directives, people against their family members' desires are
having food and fluid withdrawn.
Regarding the specifics of the Schiavo case, we need to
keep in mind that case, while the media I think went to great
lengths to portray it as a Republican-Democrat kind of thing,
it totally transcended that when you actually looked at the
yeas and nays and when you looked at who signed on the original
bill. Some very serious concerns were also expressed about the
way that case was handled.
This issue is going to continue to be a problem in my
opinion and we as a body are going to come under increasing
pressure to help contain costs in the Federal health programs
and as well insurers are going to come under increased pressure
from policyholders, premium payers to contain costs. So when
you are talking about something as fundamental as food and
water, I think it is very appropriate for the Congress of the
United States to explore this issue. I think a standard needs
to be established and any standard we establish in the Federal
programs have the high likelihood of becoming a standard in
private practice as well.
Mr. Cummings. When you say costs, you are not talking about
the food and the water. Costs go to a person being in a bed in
a facility with people looking after them. You said the reverse
has now happened where the doctors may take them off the food
and water.
Dr. Weldon. That is happening today in America.
Mr. Cummings. I want to ask you this. Do you think a lot of
that has to do with costs?
Dr. Weldon. Yes, I do. I think a lot of the physicians in
the institutions look at the cost of sustaining people and it
takes you down what is called a utilitarian path of medical
ethics where we are no longer looking at the sanctity of human
life and the need to preserve human life, but we are looking at
these broader issues of social good and the cost to the
programs.
I have not yet concluded drafting my legislation but I am
pretty close. I am trying to you might say divide the baby here
very accurately. It is a very, very tricky issue. My own
personal experience was that most physicians get this right. We
were very focused on the case of Terri Schiavo a few weeks ago.
However, these kinds of decisions are made on a regular basis
in most hospitals and nursing homes and hospice centers in the
country and there is usually no controversy surrounding them.
There is an increasing trend that I think warrants a Federal
standard to be established.
Mr. Cummings. Last but not least, as we get older, people
living longer, I guess it is reasonable to predict that there
will be more of these situations, would you agree? Is that
reasonable to assume?
Dr. Weldon. Yes, I think it is quite reasonable to assume
that.
Mr. Cummings. I take it part of what you are saying is that
we see this reverse thing going on, the withholding of food and
water and we see people getting older, so therefore there is
going to be more of this. We see the cost of health care going
up and some kind of way in that climate, we had better prepare
ourselves to set some kind of reasonable standard.
Dr. Weldon. I would describe it as a minimum moral and
ethical standard that is biased toward life, in particular the
fundamentals of life, food and water. I would not want to
venture into the broader issue of when do you intervene with
drugs or machines. Those kinds of issues I think are best left
to professional associations and institutions but when you are
talking about the fundamentals of food and fluid, one of the
things unique about the Schiavo case is the judge's order from
the bench was you could not bring a glass of water to this
woman's lips. While it may seem extreme, it is not
unprecedented. There have been similar cases in the past. To me
that warrants what is called a substantive standard in Federal
law or regulations be established regarding when it is
inappropriate to do that and that standard should be biased
toward life. Otherwise, we would begin going down a dangerous
path of denying food and fluid to a lot of disabled people who
have a will to live.
Mr. Cummings. Thank you.
Mr. Souder. Mr. McHenry.
Mr. McHenry. Dr. Weldon, I certainly appreciate your
testimony thus far and appreciate your depth of knowledge on
this issue. I think you are in a unique position in Congress
because of your medical background to address this issue.
You said a bias toward life, and this is only in cases
where there is a controversy, a legal controversy about the
incapacitated individual's life? Is that correct?
Dr. Weldon. No. What I am looking at is introducing
legislation and I am actually soliciting input from the
committee on this issue. A standard for when it is
inappropriate to withdraw food and fluids really in any
circumstance, not just when you have a family controversy like
you had in the Schiavo case.
Mr. McHenry. Would this be geared directly toward Medicare
or Medicaid patients?
Dr. Weldon. I would favor that and the reason I would favor
that is we are the principal funder of Medicare and Medicaid
and if an institution is going to receive those funds, they
should be held to a standard that is biased toward giving
essential nutrients and favoring a respect for human life.
Mr. McHenry. Is it in essence sort of a standard of case
issue with Medicare and Medicaid?
Dr. Weldon. I would describe it as an extension of care
issues because there are lots of standard of care issues within
the Medicare and Medicaid programs that currently exist today.
It is these fundamental issues or requirement of food and water
have never been established before in law or in regulations.
Mr. McHenry. So in essence, it would be just as though
Medicare and Medicaid have a certain standard of care that they
demand?
Dr. Weldon. In order to be eligible to receive
reimbursement through the Medicare and Medicaid program, if you
are going to be taking care of these patients I think you
should be held to a minimum standard of delivering food and
water to people except it needs to be qualified in such a way
that you are not forced to give food and fluids to people who
are obviously in the dying process or people as well who have
an advanced directive indicating they would not want to receive
food and fluid.
Mr. McHenry. So in the absence of a medical directive and
with the basic standard of care, so it would be an extension of
current Medicare and Medicaid policy and just putting in a
certain level of care that every doctor must provide for their
patients?
Dr. Weldon. Correct.
Mr. McHenry. Thank you and thank you, Mr. Chairman, for
having this hearing.
Mr. Souder. Ms. Brown-Waite.
Ms. Brown-Waite. Thank you and thank you, Doctor, for being
here.
You and I have had many conversations about this very
difficult issue. I would like you to clarify a couple of
comments you made. One was you find it disturbing that an
increasing number of doctors in hospitals unilaterally are
withdrawing food and water. Could you quantify that? Is it in
the tens or is it 20, is it hundreds, thousands?
Dr. Weldon. The National Right to Life Committee provided
me a report and I would be very happy to make a copy of that
report available to you as well as to the record. It is
entitled, ``Will Your Advance Directives Be Followed?'' The
report is full of cases where family members report advance
directives in favor of administration of food and fluid were
properly executed and family wishes were present that food and
fluid would be continued and health care providers and
institutions shut off the food and water allowing the person to
die based on sometimes a medical ethics committee at the
institution making the decision, sometimes it is the individual
providers.
The concern I have in this is there is no standard in 80
percent of the States, in 40 States. There is no legal remedy
that the family members can go to in order to prevent that from
happening once the institution makes that decision. In terms of
the absolute number, I can provide the report.
Ms. Brown-Waite. That would be very helpful.
In today's world where we have such a litigious society,
doctors tell me they wouldn't do this because of fear they
would be sued for either wrongful death, even though it is a
premature death, or medical malpractice. I hear from doctors
back in the communities that if anything, they actually are
erring on the other side, putting feeding tubes in and keeping
them in for the fear of litigation.
Dr. Weldon. Yes, there is some of that. Indeed, I had a
very interesting conversation with a tort attorney who actually
makes his living suing nursing homes. One of the things he most
often sues for is failure to provide adequate food and fluids
that leads to medical complications. In that same milieu, there
is the other side of the story and it typically involves people
with disabilities and most often it is people with severe
disabilities and institutions are making decisions to withdraw
food and fluid and it is typically based on a quality of life
analysis. To my knowledge, none of those cases have been
successfully litigated through the court system.
Ms. Brown-Waite. The last question for you is, if we set a
standard for Medicare and Medicaid and private insurance
companies don't follow it, do we have a system of unequal
rights? In other words, the Medicare or Medicaid patient, we
would err on the side of food and water and the private pay or
one of the individual insurance companies, they would never
adopt this standard. Help me to understand why we would have
two standards?
Dr. Weldon. The remedy for that would be a universal
Federal standard that not the Federal programs would have to
adhere to but as well private insurance companies would have to
adhere to it. One of the issues you would get into there if you
try to move such a legislative act through the Congress is that
you are usurping State authority, State law, State regulatory
processes and people who hold to a very strong Federalist
opinion may not want to go down that path.
My experience is the majority of these cases are within the
Federal programs but your point is actually well taken and if
you are alluding to the fact you would like to see it
broadened, then I would be very interested in your input on
that issue.
Ms. Brown-Waite. You sparked another question for me and
that is would you have government intervention in a case
similar to Terri Schiavo's where allegedly she expressed her
views to people but it was never written down, so is your goal
to override a family member carrying out the person who is in
the hospital or in the nursing home or hospice, override their
decision even if it wasn't in writing?
Dr. Weldon. What you are really getting at is if we had the
standard in place during the Schiavo incident, how would that
have played into the deliberations in that case?
Ms. Brown-Waite. Correct, because she was on Medicaid.
Dr. Weldon. Yes. I am not really sure and I would have to
defer to legal scholars on that. I have not even finished the
process of drafting my legislation. As you know, I am a
physician, not a lawyer. It is not my intent to replay the
Schiavo case in current law. What has been drawn to my
attention mainly by some of the people sitting behind me who
represent some of these disability groups is a strong level of
concern about a trend in health care delivery which I think is
being driven a lot by cost issues Mr. Cummings brought up and
that you are going to see more and more people who are less and
less disabled being denied care if we do not at least establish
some sort of floor or basement or fundamental standard.
Ms. Brown-Waite. But again you would have two sets of
health care, those on Medicare and Medicaid and those not
covered by Medicare and Medicaid. I know you are working on a
very thoughtful bill.
Dr. Weldon. I am not exactly sure what your concern would
be because my experience is the Federal standards are usually
adopted by private industry.
Ms. Brown-Waite. That may have been the case but with
increasing health care costs, I am not sure unless it was
mandated that insurance companies would follow through on that.
I look forward to seeing your bill.
Dr. Weldon. If it was a standard in Medicare-Medicaid, it
would probably involve funding and it would be targeted
basically to facilities.
Mr. Souder. Our challenge in Congress is which rights are
basic and fundamental and transcend. Is this a right to life, a
right to certain types of services? Clearly in Medicaid and
Medicare we make decisions and they are interpreted through the
Department of Health and Human Services that are very difficult
decisions. This limb constitutes this much, this limb
constitutes this much and private pay can cover different
things. There are different standards. The question is does the
right to water and food transcend public-private, is that a
basic right or is that a right tied directly to our funding? We
certainly are feeling the cost pressures here. Everybody is
raising health care cost questions. Businesses are raising it,
doctors are raising it, hospitals are raising it, how many
hearts are you entitled to, how many of this and that, how do
we sort through this very difficult cost, quality of life
question?
What we are saying and I think you brought up really well
and hopefully we can work through this hearing is we have to be
very careful about having quality of life be the sole
determinant here. Are we in effect making one whole class of
citizens second class citizens. Hopefully as you develop this
and I know we had talked about this before the Terri Schiavo
case and will continue to talk about it afterwards, but this
certainly put a different heightened awareness in the case.
Thank you for coming today and testifying.
We will move to our next panel. Dr. Don Young, Deputy
Assistant Secretary for Planning and Evaluation, Department of
Health and Human Services whose job it is to provide as much
and total health care for everybody at basically no cost and
make sure everybody gets absolute service.
We do need to swear you in.
[Witness sworn.]
Mr. Souder. Let the record show the witness responded in
the affirmative.
Thank you for taking time today to come and address. We
look forward to your testimony.
STATEMENT OF DR. DONALD A. YOUNG, DEPUTY ASSISTANT SECRETARY,
PLANNING AND EVALUATION, DEPARTMENT OF HEALTH AND HUMAN
SERVICES
Dr. Young. Thank you for inviting me today to discuss the
role of Medicare, Medicaid and advanced directives for those
who cannot care for themselves.
We are committed to ensuring that Medicare and Medicaid
beneficiaries receive appropriate care tailored to their own
needs and that they understand their rights and options in all
care settings.
As the subcommittee undertakes an examination of policies
regarding the status and legal rights of incapacitated
individuals, I appreciate the opportunity to provide an
overview of the role of the Medicare and Medicaid programs as
well as other programs within the jurisdiction of the U.S.
Department of Health and Human Services.
Medicare and Medicaid both play an important role in
financing care for patients who may need to make choices about
the types of health care they want. Medicare and Medicaid serve
to protect the health of individuals at every stage of their
lives, including when they cannot speak for themselves.
However, decisions about health care itself are not made by
Medicare and Medicaid. Such decisions are made by individuals
and their families in consultation with their physicians.
The Federal Medicare and Federal State Medicaid programs
provide coverage for hospital, skilled nursing facility and
home health service and hospice care as well as nursing
facility services for long term care for Medicare
beneficiaries. Hospice covers a broad range of medical,
personal assistance and social services with the goal of
keeping the patient comfortable and pain free and supporting
the family. Hospice was added as a benefit under the Medicare
Program in 1983 and as an optional benefit under Medicaid in
1985. The number of beneficiaries electing hospice care and the
number of agencies offering such services has grown steadily
ever since.
The Centers for Medicare and Medicaid Services developed
conditions of participation that health care organizations must
meet to participate in the Medicare and Medicaid programs.
These standards are used to improve quality and to protect the
health and safety of beneficiaries. Conditions of participation
vary by facility type and include requirements related to
patient rights, medical staff, skilled nursing and
rehabilitation services, food, dietetic services and needs.
An important condition of participation is the requirement
regarding advance directives. The Patient Self Determination
Act of 1990 requires that all adult patients in all covered
settings be informed of the right to accept or refuse treatment
through an advance directive. An advance directive is a written
instruction such as a living will or durable power of attorney
for health care. It is recognized under State law relating to
the provision of health care when the individual is
incapacitated. This also includes do not resuscitate orders.
Compliance with this requirement is a condition of
participation under the Medicare Program for hospitals,
hospices, skilled nursing facilities, home health agencies and
Medicare advantage plans. Medicaid managed care organizations
also must comply with identical requirements.
Advance directives address both treatments individuals do
and do not want. For example, an individual may prefer that
health care providers perform all possible life prolonging
treatments. Conversely, a person may elect to receive non-
curative care. Therefore, if an individual has specific
treatment preferences, they would be able to document them in
an advance directive. The Social Security Act which codifies
the Patient Self Determination Act of 1990 mandates that all
institutions receiving Medicare and Medicare funding inform all
patients regardless of whether they are entitled to Medicare
and Medicaid of the right to accept or refuse medical treatment
through an advance directive.
All health care institutions must maintain written policies
and procedures concerning advance directives with respect to
all adult individuals receiving medical care. We are required
to provide written information to such individuals. In
addition, providers must document in the individual's medical
record whether or not the individual has executed an advance
directive and may not discriminate in the provision of care to
an individual based on the existence of an advance directive.
Providers must also comply with State laws regarding
advance directives and provide for education of the staff and
communities on issues concerning advance directives. In
addition to Medicare and Medicaid, other government programs
and services are available to families addressing health care
issues for vulnerable individuals including Federal, State and
local government partnerships that include ombudsmen protection
and advocacy groups, adult and child protective services. These
include the Health Resources and Services Administration
programs that provide services and benefits for persons with
traumatic brain injury.
The Administration on Aging has a strong commitment to
protecting the rights of seniors and helping them to make end
of life care decisions. Nearly 1,000 AOA funded legal providers
help seniors to obtain medical and financial powers of
attorney, living wills and advance directives. The AOA also
administers an ombudsmen program under which local ombudsmen
work on behalf of residents in hundreds of communities
throughout the country. AOA also supports the National Family
Care Giver Support Program.
In conclusion, we are committed to ensuring that vulnerable
beneficiaries receive appropriate care through Medicare and
Medicaid that is tailored to their needs and that they
understand their rights and options.
As you can see, a variety of protections are in place in
Medicare, Medicaid and beyond these programs to ensure that
beneficiaries receive appropriate health care.
I thank you for holding this hearing and I am happy to
answer your questions.
[The prepared statement of Dr. Young follows:]
<GRAPHICS NOT AVAILABLE IN TIFF FORMAT>
Mr. Souder. Let me see if I understand this correctly. The
medical decision whether to spend the money, the Medicare-
Medicaid money, is made at the doctor or hospital level and you
don't monitor this unless someone makes a complaint?
Dr. Young. No. Let me make a very important clarification
here. I was speaking of the conditions of participation. The
Medicare Program sets those conditions of participation and
surveys facilities to be sure they are adhering to those
conditions of participation. One of the requirements within
those conditions of participation is the requirement they offer
an advance directive. The Medicare and Medicaid programs set
similar policies related to reimbursement to which your
question was directed.
Once conditions have been set for reimbursement, once
decisions have been made on what is a covered service and what
is not a covered service, if the physician is furnishing it in
a way that meets professional standards, we don't get into the
examining room between the physician and the patient.
Mr. Souder. What did you think of Dr. Weldon's statement
which he said came from a right to life report that many
hospitals, up to 80 percent, have often violated the express
will of the patient and is there monitoring of this?
Dr. Young. I was first of all surprised by that. I had not
seen that report. I intend to obtain that report and look at it
very soon. Amongst the kinds of questions I had were if indeed
there were 80 percent, was it 1 patient out of 1,000. That is,
did something happen that could have been inadvertent or
willful? We have some information related to nursing homes. We
do not have a lot of good information on this. A substantial
proportion of nursing homes are following the rules but not all
of them and there are times we have to go in and cite and
encourage them to adhere to the rules they say they are
adhering to.
Mr. Souder. Do you know of any cases where you have
intervened in a feeding type situation?
Dr. Young. The Department or the Medicare Program?
Mr. Souder. Yes, where there was somebody who had a
statement, the hospital didn't want to provide it and the
Department of HHS has intervened and said look you are supposed
to provide that either by fining them or rebuking them? Do you
have a penalty if they don't?
Dr. Young. First of all, I am not aware of that having
occurred. In terms of our conditions of participation and our
overall requirements, we do have surveys and we do check. There
are penalties that are on institutions for violations of those.
They can be civil money penalties, monetary but for very
egregious violations of conditions of participation, providers
can lose their ability to participate in Medicare and Medicaid
which essentially effects their providing services to
everybody.
Mr. Souder. Are almost all of those cases brought to your
attention by the system you set up for elder abuse reporting or
disability reporting, national family care giver support
programs or are these being found and discovered by HHS
investigators?
Dr. Young. They are being found by either the staff
responsible for drafting and enforcing the standards and
frequently that is done at the regional office level not
centrally.
Mr. Souder. You had in your full written statement that
according to the Patient Self-Determination Act of 1990, it
mandated that most institutions receiving Medicare and Medicaid
funding inform all adult patients. What would be the exception
category, do you know?
Dr. Young. All of what we call providers and provider
facilities are covered by that--hospices, nurses, skilled
nursing facility, long-term care hospitals, acute care
hospitals. All those things that we would call an institutional
provider plus a hospice, which may be without walls, are
covered by that.
Mr. Souder. I would be interested in your personal
reaction, since you are a physician as well, to what I asked
Congressman Weldon about the U.S. Conference of Bishops. I know
you were here and heard the question about this difficult
question that, practically speaking, how is a decision reached
that a procedure has no medically reasonable hope of sustaining
life or poses excessive risks or burdens, and should this
consideration override Federal presumption in support of
nutrition and hydration?
Dr. Young. There are some very, very difficult judgments
embedded in that. When a patient looks like they are end of
life, you can look at their brain functioning, you can do a
whole host of studies and tests to see is there any probability
of recovery here. If they have advanced diseases such as
cancer, you know approximately what their life frame is. Having
all that information, that still boils down to an extremely
difficult decision to be made.
And if you are talking about some of the things we were
talking about here today, the physician needs to involve the
family and know the family's wishes and the patient's wishes.
If you do not have an advanced directive, and it would be nice
if you always had one, then you have to have some understanding
what you and the family believe the patient would have wanted
and what they would have wanted. And your concern, ultimately,
is still the welfare of the patient. So, as Dr. Weldon said,
there is a time when there is severe suffering and that has to
be a factor you and the family consider in making your
determination.
Mr. Souder. Thank you. Mr. Cummings.
Mr. Cummings. If the problems that Dr. Weldon talked about
that he read in the Right to Life document that he just
referred to a moment ago, if that were something that were
happening--and I am not saying it is not, I do not know--who
would know that? It seems like that is the kind of information
that would come to some office in HHS. Is that reasonable to
guess?
Dr. Young. Let us assume that there have been violations
and there are more than random violations, which you may not
find, the patient, the patient's family can report it, they can
report it to one of the various hotlnes, they can report it to
the IG, they can report it to HHS directly. Providers in that
hospital could discover it and report it via one of those
mechanisms. Routine audits of medical records could determine
it and it could be reported through the hospital's own quality
oversight and medical audit review, professional standards
review organizations. There are numerous places within the
health care system where there is oversight that hopefully
would identify and report up that kind of problem.
The question I have that you are going to have to ask the
legal authority, Justice Department, is, if, indeed, these
determinations have been made by the patient, how can they be
overturned by the hospital? And I do not have enough detail to
understand that report from Dr. Weldon. But I think embedded in
that is a very important legal question that needs to be
answered as well, if, indeed, that is happening more than on
rare occasions.
Mr. Cummings. So I would take it, based upon what you just
said, that you were a bit surprised by that comment of
Congressman Weldon that this was something that apparently has
happened quite a bit. Were you surprised?
Dr. Young. Yes, sir, I was surprised. I am not aware of
that report.
Mr. Cummings. OK. You prepared a statement to come here
today, did you not, and it is a very good statement. I was just
wondering, I know it may have caught you by surprise what he
said, but in your discussions with the people in your office, I
am sure you had discussions generally, did you hear about
anything like this?
Dr. Young. No.
Mr. Cummings. One of the things that Dr. Weldon said that I
think just deserves a lot of consideration is he talked about
whether you are prolonging life or prolonging the death
process. And you have said it to a degree, that this is a
judgment, this is a pretty significant judgment call. I am just
wondering, the chairman asked you about monitoring and how is
it monitored, I would guess that even if you were doing some
monitoring, there might at this point be some question as to--
let us say you have somebody who says, look, that doctor
withheld water and food and it was a directive of my loved one
to have everything possible to sustain my life, food and water
to save my life. Is there not a question then, is this
sustaining the life, or is this sustaining the death?
Dr. Young. You put your finger on an extraordinarily not
only complex, but very, very difficult judgment. The body is a
very, very resilient thing and predicting how different people
will react under differing circumstances, even those who are
very, very sick, is very difficult and fraught with error.
Mr. Cummings. When I practiced law, we often had to have
guardianships over people because they could not do for
themselves, and quite often dementia set in. When you are
trying to figure out what is in the best interests of this
person, it does become a bit complicated. One of the standards
has been that you want to do everything you can do to protect
the person, almost like you would protect a baby, because they
cannot protect themselves.
So, in this instance, it seems as if one of the things that
we are trying to do, and I think--I think--part of the reason
for this hearing is to protect those who are most vulnerable
and those who find themselves in a situation because of illness
or what have you where they cannot--well, it depends, if they
made a decision, trying to carry out that decision, if they
have not made the decision, trying to figure out what you do
from there. Do you think there is enough in the law right now
to protect people, you following me, with what you are familiar
with?
Dr. Young. Yes. Yes, I do follow you. I understand the
question. I think the most important protections that are there
are through the Medicare conditions of participation that apply
to everybody, and that is the requirements related to an
advanced directive. The deficiency that we have, and I think it
applies to all of us, is we probably need to do a better job
educating the public to fill out those papers and to do their
advanced directives, because we still have a substantial number
of people who have not. If we had those advanced directives for
everybody, if the loved ones, the family, the physicians knew
the wishes, then the kinds of decisions and discussions that we
are talking about today would be very rare and might not be
there at all.
Mr. Cummings. I was just reading and listening to what you
had to say about the ombudsman. They play a pretty significant
role. How prevalent are they, doctor, the ombudsmen? It seems
like a really wonderful position. I see some of them are
voluntary, so I do not know how widespread they are. Are they
controlled, by the way, do we have anything under HHS that sets
any criteria for ombudsmen, what they are supposed to do, what
they are supposed to be looking for? Or is it just something
where people kind come into hospitals or hospices and say,
look, I am volunteering, I want to just kind of watch over
things. Because I am wondering, if it is not something that is
pretty concrete, maybe that is something that we might want to
look into.
Dr. Young. They are voluntary. But the program itself is
one that I do not have the details on, I would be happy to get
you more information and submit it for the record.
Mr. Cummings. But from what you have written here, I am
almost finished, Mr. Chairman, they do and can play a
significant role. As a matter of fact, it sounds like they
could possibly play the role of a whistle-blower at times. Is
that reasonable to conclude?
Dr. Young. Well, yes. And there is not one single ombudsman
or ombudsman program. There are people out there who are very
interested in Medicare beneficiaries, there are centers who are
funded to look at, to help, and to provide advice and guidance
to Medicare's beneficiaries with problems, help intercede on
their behalf. But I will get you more information.
Mr. Cummings. Last, but not least, what would you like to
see us do, if anything? Can you think of anything? You know the
subject matter here, what we are looking at. Do you see
loopholes? We are trying to figure out how we can help in this
process to clarify or to draw the line. Do you have any
recommendations about any of this?
Dr. Young. Yes. I have listened carefully to the
proceedings so far, to Dr. Weldon. I do not have any
suggestions and recommendations. A lot of this is very much
personal that belongs with the family, with the doctor, with
the patient's wishes. If you identify something that you think
would be the appropriate subject of Federal legislation, we
would be happy to look at it, give you our opinion and our
advice.
Mr. Cummings. OK. Thank you.
Mr. Souder. One thing that would help as a start, our staff
tried to get data under Medicare and Medicaid as to any numbers
that you might have on people in minimally conscious state or
persistent vegetative state that are funded under Medicare or
Medicaid. We do not have any idea of the universe of people we
are dealing with. Is this a little problem? A big problem? Does
such data exist?
Dr. Young. We have some limited data. On the Medicaid
program side, there was a study done, it is probably 4 years, 5
years old now, but under that study, it was estimated there
were about 2,500 people accountable for about $600 million in
spending for inpatient care with a diagnosis of persistent
vegetative state. So that gives you some notion. It is not an
inconsequential number of people or an inconsequential number
of dollars, and that is only for the inpatient hospital
setting. Were that done in nursing homes, you would certainly
find additional increase.
Mr. Souder. So you do not have reporting data that would
isolate that? That was a study done, a sampling?
Dr. Young. Yes. All of this would have to be done either as
a study using claims data, or as a research project that was
designed specifically to get at the questions that are being
asked.
Mr. Souder. Because one of the things, in addition to this
group of individuals, really, what is underneath the concern
here is, as we grapple with incredibly intense cost pressures,
from our funding level that is going to HHS, to the State
level, flat funding Medicaid all over the country as we block
grant more to them, that the goal of hospitals and nursing
homes is to cap the number of Medicare and Medicaid patients
that they have and try to blend it as much with at least
private payer, blend it and this cost pressure. What we have as
a fundamental concern here is that those who are least able to
speak for themselves and those with disabilities are going to
get shunted aside or at least have less of a voice.
There needs to be a fair public debate about how we are
going to resolve this difficult question. Because they probably
take a lot of dollars per patient, for a long period of time,
have, depending on the nature of their disability, more
specialists involved, and, therefore, become vulnerable,
especially if their spouses or children may not live in the
area, may not be alive. So how do we as a society make these
kinds of decisions? And if we do not have some basic data in
addition to casual sampling, the pressure--let us say if there
is a hospital that is already cost-squeezed and there are 10
patients at that hospital as opposed to none at a private pay
hospital, how do we sort through, and what is our
responsibility as a Nation to protect individuals' fundamental
rights, like we did under ADA or other types of legislation?
Dr. Young. I very much agree with you, Mr. Chairman, on the
problem with costs. We, as a Nation, are struggling with that.
I think we will continue to struggle with it. But we need to do
something about that because of the downside in terms of
numbers of people who are uninsured and other issues.
In terms of health care spending, we have always spent the
most on the sickest. Twenty-seven percent of Medicare's
expenditures are for people in the last year of life. Now
having said that, let me add very quickly a large of amount of
expenditures are also for people who live longer than that
year. And it is a very slippery slope if you start to raise
this issue. This spending does not occur once, and people
frequently do not get into a condition where they are on life
support tubes as a single event. It can happen, you are very
healthy, you go into the hospital, you need to have breathing
assistance after surgery, then something else happens and you
need to have food and water, then something else happens and
you need to have kidney dialysis. This occurs over time. It is
not a one-time kind of thing and that spending occurs over
time. So we put, as a Nation, and in the Medicare program, a
large amount of our resources on the very sickest people, and
that is appropriate.
Mr. Souder. I want to reiterate again, unless we have data,
it is tough to monitor. I know you have all kinds of pressure
to get all kinds of data, too, and we have reams of it stacked
that nobody ever looks at. It is one of the favorite things of
Congress to do is ask for data and then have nobody look at it,
or find it so inaccessible that you cannot find what you are
looking for. Nevertheless, this type of question, in addition
to the occasional study, if we are going to make sure,
otherwise, we are, in fact, dependent on the ombudsman and the
occasional kind of whistle-blower calling this, because we
cannot really do oversight, we cannot really do planning in the
agency or in Congress if we do not know how many we are dealing
with, what percentage of cost that is other than in a random
study, which may, in fact, be enough if the studies are
accurate and repetitive enough.
Dr. Young. I understand your point, Mr. Chairman, and I
will certainly carry it back to the Department to the various
components that are involved in doing research and analysis.
Mr. Souder. Otherwise, we could pass legislation that is so
sweeping but not be relevant.
Dr. Young. I agree with you. I do policy primarily for a
living, and data research and analysis is the core tool for our
work.
Mr. Souder. Ms. Watson, did you have any questions of this
witness?
Ms. Watson. No. I will pass.
Mr. Cummings. I have one other.
Mr. Souder. Mr. Cummings.
Mr. Cummings. Just one question. I just missed that 20-some
percent you said. What was that, last year?
Dr. Young. Yes, 27 percent of Medicare's expenditures were
for people during the last year of their life.
Mr. Cummings. Twenty-seven percent?
Dr. Young. Yes. But a very large number are for people who
do not die that year but continue to live. It is very risky to
look at this and say, gee, 27 percent go to people who die,
because you also know that 27 percent go to people who do not
die. You have to look at both pieces of that spending. There
are very sick people who live, and there are very sick people
who die in a given year.
Mr. Cummings. As we look, going back to something I asked
Congressman Weldon, as we look at the fact that we are living
longer, at HHS, are you all paying attention to that? It seems
like it would be almost impossible for you not to be. Because
based upon what you just said, people are living longer and we
are spending 27 percent of our Medicare dollars in the last
year of life, and you have more people you are doing that for.
And I understand all you said about some live and some do not.
So what are you all doing?
Dr. Young. Much of that work is being done through the
National Institutes on Aging. They have done a great deal of
work; they have ongoing studies. Amongst the findings, for
example, are as the population has gotten older, the age at
which people become disabled or limited has also moved out
dramatically. So the 65 year old person today continues to work
and contribute to society. Twenty years ago, the probability of
that was less. There are people now 75 and 80 who are very,
very healthy. So old age by itself, however you want to define
that, is frequently associated with very robust life.
Mr. Cummings. I have to tell you, old age is a moving
target. The older you get, the more it moves. [Laughter.]
Dr. Young. We want to keep it moving out.
Mr. Cummings. Thank you.
Mr. Souder. Thank you very much for your testimony. We may
have some followup. I wanted to clarify for the record, the
Right to Life report said that 80 percent of the States do not
have laws effectively protecting against hospital denial of
food and fluids. That is different than saying 80 percent had
not done that. That is a substantially different statistic.
Dr. Young. Yes, sir. Thank you, sir.
Mr. Souder. Thank you for testifying today.
If our third panel could come forth; Diane Coleman, Bob
Sedlmeyer, Kate Adamson, and Robert Destro.
I will administer the oath.
[Witnesses sworn.]
Mr. Souder. Let the record show that each of the witnesses
responded in the affirmative.
We are going to start with Diane Coleman, who is president
of Not Dead Yet. Thank you for coming today, and we appreciate
your testimony.
STATEMENTS OF DIANE COLEMAN, PRESIDENT, NOT DEAD YET; BOB
SEDLMEYER, FORT WAYNE, IN; KATE ADAMSON, REDONDO BEACH, CA; AND
ROBERT DESTRO, PROFESSOR, COLUMBUS SCHOOL OF LAW, THE CATHOLIC
UNIVERSITY OF AMERICA
STATEMENT OF DIANE COLEMAN
Ms. Coleman. Thank you. Thanks for the opportunity to talk
with you today. I have a J.D. and an MBA from UCLA, and I am on
the adjunct faculty at the University of Illinois at Chicago,
co-teaching a graduate course series in disability and medical
ethics. I am also the executive director of Progress Center for
Independent Living in Forest Park, IL, which is a nonprofit
service and advocacy center operated by and for people with
disabilities.
I have a neuromuscular disability and I have used a
motorized wheelchair since I was 11. The first thing I would
like to do, because of the topic of this hearing, is to
acknowledge Congressman Danny Davis, who is also a member of
this committee, for his leadership in cosponsoring MiCASSA, the
Medicaid Community Attendant Services and Supports Act, which
would give people with disabilities, old and young, the choice
to receive long term care services in their own homes rather
than being forced into more expensive and dehumanizing nursing
homes and other institutions against their will. For an indepth
discussion of that, I refer you to the testimony of Bob Kafka
which was submitted in writing for this hearing. I am sure it
is over on the table there. I hope that you and many of your
colleagues will become cosponsors of this important
legislation.
When I was 6 years old, my doctor told my parents that I
would die by the age of 12. I am 52, so, so much for
predictions. But 3 years ago, I started using a breathing
machine at night. I had two friends about a decade ago, one was
in her 30's and one was in her 50's, who needed the same thing.
But their doctors, who were in Nashville at major hospitals,
discouraged them from it without really saying what would
happen as a result. At an early age, they each went into
respiratory distress, and died each within a month of that from
infections. I have had many friends say they were pressured to
sign do not resuscitate orders, and some who said the doctor
told they are under one whether they like it or not, hospital
policy.
Frankly, I am a bit worried about what might happen to me
if I get into some kind of a medical crisis and wind up in a
hospital. I have a health care proxy, but I am worried that his
decisions that I have entrusted to him might not be followed. I
am not at all convinced that decisions to live are still
treated with the same respect as decisions to die.
By the time the Schiavo case reached major national
attention, 26 national disability organizations had said that
Terri Schiavo should receive food and water, that her rights
had not been protected, she had not selected her own guardian,
the evidence was so conflicted it did not meet Constitutional
standards. So I have attached to my written testimony a 3-page
statement that was issued by 23 of those organizations in
October 2003, and also a more recent article co-authored by
Steve Eidelman, who is the head of the Arc of the United
States, formerly known as the Association for Retarded
Citizens, and Steven Drake, who is research analyst for Not
Dead Yet.
We have wondered by pro-life and religious groups have
received so much attention while so many prominent disability
organizations have been ignored. It appears that disability
rights advocates do not fit a script that the media and many
others have seemed determined to follow. For the last three
decades, certain bioethicists have told you that euthanasia is
about compassionate progressives versus the religious right.
Never mind that these bioethicists are actually talking about
the legal parameters for statutory guardians and health care
providers to medically end the lives of people with
disabilities on a discriminatory, non-voluntary or outright
involuntary basis. Concerned disability groups do not fit the
script and so we have been ignored.
The bioethicists who have shaped this debate apparently
think of themselves as progressives, but they never seem to
discuss cutting unnecessary health care marketing costs or
profits before cutting lives. People with disabilities would
like to educate them about the difference between a dying
person and a person with a disability who is nowhere near death
but depends on medical treatment to live.
We have a lot of information and arguments and we have
tried to put them forth--in fact, we filed three amicus briefs
in the Schiavo case--but, again, we are ignored. Many of these
bioethicists have actually had hundreds of millions of dollars
to work with over the last 15 years from major foundations, and
they have used it to build a steamroller that is decimating the
civil and Constitutional rights of people in guardianship. They
have been making rules about who lives and who dies, changing
State laws state-by-state, influencing attorneys general state-
by-state, and Hollywood screenwriters, all of this pretty much
behind closed doors and under the public radar screen. We agree
that many things are private family matters, like parental
discipline of children, for example, until they go too far.
Is there a Federal role? I think the disability community
feels that there is. It is a civil rights issue. It is one of
those States rights can be States wrongs kinds of things. But
we do agree that there are a lot of complexities, a lot of
people affected by this, a lot of experiences that people have
had that influence how they feel about it. And we feel that we
need to be very deliberate and proceed carefully, not in a
rush, but rather to come together and figure out how best to
honor and respect all individuals. So, in a way, we feel like
we need a time out.
The ideas of collecting information are really useful. It
is kind of shocking that the Cruzan opinion came out in 1990
and somehow, with all those hundreds of studies of advanced
directives and hundreds more of so many other things relating
to so-called end of life care, some end of life care is good,
but others is more about ending lives, and we are trying to
figure out the difference here, but with all those studies, we
do not know who is dying by withholding of treatment, who made
the decision, what treatments were withheld, under what
circumstances. We do not even know that for people in Medicare
and Medicaid. And we could not even go back and do a
retrospective study of medical records because the cause of
death is written as whatever the underlying condition is and
not the withholding of treatment. So it is going to have to be
a very deliberate process that figures this thing out.
Regardless of our abilities or disabilities, none of us
should feel that we have to die to have dignity or be relieved
of pain, or that we should have to die to stop burdening our
families or society. We would like all of this committee to
reject the script, the right-left script. Listen to the
disability rights movement. On that issue of the coming wave of
aging baby-boomers, we are your advanced guard. We have been
doing this for decades, working out what are the ways to best
deal with empowering individuals and families and supporting
individuals and families to live to their highest potential,
and in a way that is as cost-effective and consumer-directed as
possible. That is what we are about. We would like to help
everybody figure out how to do that in time that a decade or
two from now we will be glad who we turned out to be.
[The prepared statement of Ms. Coleman follows:]
<GRAPHICS NOT AVAILABLE IN TIFF FORMAT>
Mr. Souder. Thank you very much for your testimony. All of
the witnesses' full statements will be included in the record.
Our next witness, Bob Sedlmeyer is from my hometown of Fort
Wayne, IN. He and his wife Cheryl, and I know he will tell us
some of the story, but I want to say to those, in addition to
those in the room, to those who are watching on television,
Members or staff, the media, we can argue about what our
Government policy should be, but Bob and Cheryl have practiced
what parents who have loved their kids and have watched their
lives be impacted for I think 19 years now, somewhere in that
amount, of where they can go on vacation, what they can do, how
much money they are going to have, they are not a rich family,
they are a hardworking family, and yet they made keeping and
feeding their daughter a center of their lives and really
appreciate that example of love, regardless of what government
does. And so we are looking forward to hearing your testimony.
STATEMENT OF BOB SEDLMEYER
Mr. Sedlmeyer. Thank you for that affirmation, Chairman
Souder. Good afternoon. I play many roles in life. I am a
teacher, consultant, youth minister, son, and husband. I speak
to you today, however, as a father, the father of Pam, Rob,
Valerie, Vanessa, and Tim.
Let me begin by telling you about my daughter, Valerie.
Valerie is 19 years old. Her name comes from the Latin word for
``strength,'' but if she were by my side today you would think
that she is one of the weakest persons you have ever seen.
Valerie suffers from a congenital defect of her circulatory
system called an AV malformation. It is a condition that
results in a knot of blood vessels instead of an orderly array
of arteries and veins. Her knot was formed deep inside her
brain. From the moment she was born her brain was starved for
oxygen. A series of experimental surgeries saved her life but
could not prevent the extensive and permanent damage to her
brain.
Valerie is not unlike Terri Schiavo. Spinal fluid fills the
areas where her brain has withered and died. Some would say
that she is in a persistent vegetative state. She cannot speak.
What she sees and hears is a mystery. Her fingers curl tightly
into her palms. She has metal rods in her back and right leg to
support her fragile bones. She must be carried or carted
everywhere. She has been fed through a tube three times a day
for the past 17 years. She is given medication to control her
seizures and to relax her ever-tense muscles. Her care has cost
many thousands of dollars, a financial burden that has been
carried in large part by insurance, Medicaid, and the
generosity of those physicians who have attended her.
Valerie's prognosis is not hopeful. She will never gain
more awareness of herself nor the world around her. When she
was 2 months old and well enough to be released from the
hospital, her mother and I were invited to an exit conference
with the attending neurologist. He was blunt, and his words
will forever be etched into my memory. ``Everything from the
ears up is gone,'' he said. ``I recommend that you place her
into an institution.'' We took her home instead.
Caring for Valerie has never been easy, but it has become
routine. A typical day for her begins at 5:30 a.m. Her mother
wakes her up, dresses her, feeds her, and places her into a
wheelchair. A bus picks her up and takes her to the local high
school where she joins five other students in the special needs
classroom. She is given occupational and physical therapy and
is taken on occasional field trips. She receives abundant
attention from teachers, aides, and her fellow classmates. One
boy even calls Valerie his girlfriend.
When she comes home, we place her on a cot in the family
room. Sometimes, when the weather is nice, we take her for a
walk or just let her sit in the warm sunshine. About 8 p.m.,
after she is fed and diapered, we carry her to bed.
Besides the excellent educational services Valerie
receives, we are also grateful for other services for which she
qualifies through the Medicaid waiver program. A therapist
visits her once a week in our home, and a caseworker tracks her
well-being quarterly. She also receives several hours a month
of respite care. This has given us welcome breaks from the
intense physical and emotional stress of caring for her, and
afforded our family opportunities to take much-needed
vacations. This program also pays for her food and diapers. And
since she turned 18, Valerie receives SSI. These funds
supplement our household income to provide for her clothing,
transportation, medical, and assistive device needs.
Valerie will ever remain in need of total care. She will
never hold a job. She will never vote in an election. She will
never exercise her freedoms of speech, assembly, or religion.
She will never make a positive contribution to society. Of what
value, then, is her life? For what purpose, then, should her
life be sustained?
I am not a philosopher, I am not a theologian, I am not a
physician or a judge. I claim no special knowledge. I am a
father. And I am a man of simple faith. I have had to wrestle
with these questions for many years. I know that my answers
will find little favor with current polls and pundits. I
believe the merits of Valerie's life cannot be determined by
how she can think or what she can do. I believe her worth
cannot be evaluated by how much she is wanted either by me or
anyone else. I believe that her value cannot be judged by the
ones who may see her as less than fully human, but only by the
One who sees her as made in His image and likeness. And it is
only through the eyes of faith that I have come to see her in
that way, too.
I have come to realize that her life, as wounded and
powerless as it is, is not a burden to bear but a gift to
cherish. It is not something over which to exert control but to
assume stewardship. I began to see that her long-suffering has
a purpose. She has taught me how to love unconditionally, how
to give sacrificially, and how to serve humbly. She has made me
a better husband and father. I will forever be grateful to the
many doctors, nurses, social workers, therapists, teachers,
clergy, family, and friends who have also seen the value of her
life.
Many have concurred with the sentiment that they would not
want to live like that. Many have asserted that Terri Schiavo
had a right to die. It is frightening to me that the value of
Ms. Schiavo's life, as measured by the scales of our justice
system, did not merit even food and water. I fervently hope
that such scales will never be used to assess the value of my
daughter's life, and dreadfully anticipate the day when her
right to die may become her duty to die.
So I appeal to this subcommittee to promote policies and
pass legislation that both protects the lives of incapacitated
citizens like my daughter and encourages and enables their
families to provide for their needs. Thank you again for the
opportunity to testify on these matters, and may you be guided
by wisdom and compassion as you consider your recommendations.
[The prepared statement of Mr. Sedlmeyer follows:]
<GRAPHICS NOT AVAILABLE IN TIFF FORMAT>
Mr. Souder. Thank you.
Our next witness is Kate Adamson, from Redondo Beach, CA.
STATEMENT OF KATE ADAMSON
Ms. Adamson. My name is Kate Adamson. The left side of my
body is partially paralyzed. I was once completely and totally
paralyzed; I could not move at all, I could not even blink my
eyes. Yet, I was completely conscious and aware and I was able
to feel pain. I just could not tell anyone about it. I know
what it is like to be hooked up to respirators, to be fed by a
feeding tube, I know what it is like to have your feeding tube
turned off for 8 days. Today, you will hear my opinion and hear
about my personal experience and unique perspective on the
question before this committee.
One night I was fit and healthy, a 33 year-old mother of
two small toddlers with everything to live for, and the next
morning I was totally paralyzed. According to the doctors, I
had less than one chance in a million to survive. Ten years
ago, before this happened to me, I thought I was pretty clear
about what I would want if I ever suffered a catastrophic
injury or illness. I was sure that I would rather die than be a
burden to anyone. I wanted no heroic measures taken when my
time came. Of course, I never expected my time to come soon.
But for me it came at 33. And as I hung onto life, for dear
life, I realized how little we know about things until we have
been there ourselves.
We do not know it will be like, or what we will want until
it happens to us. When I found myself in that condition, I knew
that I wanted to live. And as I lay in the hospital bed
listening to the doctors talk about my impending death and
their plans not to treat me, I can assure you that my idea of
the right thing to do for an incapacitated person had
drastically changed.
Let me tell you what it was like to be aware of what is
going on but to have to rely on others to speak for you. When
they inserted a feeding tube into my stomach, thinking I could
not feel, in fact, I could feel everything but I could do
nothing. I felt everything they were doing. I felt every cut,
every second. And I had no way to communicate. I was totally
locked into my body, unable to speak, unable to move a muscle.
And at one point my tube was turned off for 8 days and I
suffered all the pains and agonies of starvation. I was in
excruciating pain, in silence. I was on the inside screaming
out: I do not want to die. Do not starve me. I want to live.
Please feed me something.
Now if you asked me today if it was worth going through
everything I went through to live, I would say without doubt,
without a hesitation, yes. As a disabled person, my life is as
important as any life. My children love me as much as any
children love their parents, my husband loves me as much as
when I had the use of two good arms and two good legs.
When I waged my fight to get treatment, the way life was
viewed in this country was a potent weapon in my husband's
fight to save me. It would not be so today. In 1995, you did
not do your best to speed up death. You did not starve people
to death assuming that it would be a painless death. Today
people do. Today, courts back up selfish disregard for human
life with court orders that terminate life. The courts do not
even require evidence proving the issues of life and death
beyond a reasonable doubt. You can take a life is the person's
life is deemed by so-called experts to be not worth living.
Courts are even willing to end lives based upon flimsy hearsay
evidence presented by guardians who may no longer have their
ward's best interests at heart or may even have a conflict of
interest.
In this country, in the year 2005, Federal judges and State
judges said to people like me that we do not count. A judge
said to my family that I was not worth as much as an able-
bodied person. You think I am wrong? Then tell me of one case
when this Congress or any courts of this land would allow you
to starve to death an able-bodied male or female. Yet, that is
just what was done in the Terri Schiavo case. If I am wrong,
then explain it to me or to the other millions of disabled
people in America, who, I might add, vote.
No person should be put to death in this country again
without providing that person the same rights you afford to
mass murders. Michael Schiavo had the right to hire all the
experts he wanted, and he had the money to do it using the $1.3
million he received in the malpractice case. Unbelievably, he
was able to hire attorneys and experts who are proponents of
euthanasia using the very money that was supposed to be used to
treat and try to rehabilitate Terri. Scott Petersen, at the
people's expense, got all the experts he needed to defend his
life. But faced with the prospect of having a judge end her
life, Terri Schiavo initially had no experts to speak for her
and had no attorney to speak in her favor for her life, and she
could not even use the funds recovered in the malpractice case
for her to get the help she needed in the legal system. There
is no balance of fairness afforded to her.
So here comes my opinion. Never again allow judges the sole
discretion to make these kinds of decisions without affording
the condemned all the rights of a criminal accused. Give the
courts clear direction forcing them to make the guardian prove
every element of a case that would result in taking a human
life, no matter what condition that human life is in, beyond a
reasonable doubt. Never allow simple hearsay evidence on any
matter that would take a life. Make it mandatory for every
disabled person to have a lawyer whose sole job is to argue for
his or her life with the presumption in the favor of life. And
in all such cases pay for that lawyer if the person cannot
afford it. Provide that lawyer with all the tools he or she
would have if they were defending a mass murder.
We are not asking for special rights. Disabled people do
not want to be treated as special human beings. They just want
to be treated as human beings. Thank you.
[The prepared statement of Ms. Adamson follows:]
<GRAPHICS NOT AVAILABLE IN TIFF FORMAT>
Mr. Souder. Thank you very much for your testimony.
We will now close with Mr. Robert Destro, professor at
Columbus School of Law, The Catholic University of America. And
you really did not have to have an accident to try to testify
today. [Laughter.]
STATEMENT OF ROBERT DESTRO
Mr. Destro. Thank you, Mr. Chairman. I do apologize for not
getting a statement in to you. But as you can see, I am living
proof of the adage that anyone can become disabled at the blink
of an eye. And mine was, unfortunately, at the blink of a
Washington flyer taxicab that rear-ended my car last week. So I
did not get a chance to finish it. With your permission, I will
submit the written comments for the record.
I appear today not only as a civil rights advocate who
specializes in discrimination on the basis of disability and
religion, I was privileged to serve as counsel for both
Governor Bush and the Schindler family in the Schiavo case. And
if I can underscore anything in my testimony today, it would
really be that I really do not think, based on my experience
certainly as a member of the Civil Rights Commission back in
the 1980's, as well as in my experience throughout the Schiavo
case, that either the courts or the media really understand the
issue of discrimination against people with disabilities,
especially those involving disabilities caused by a brain
injury or a disease.
I think that it is kind of the ultimate when you listen to
the discussion of people on CNN and Fox News and MSNBC, you can
almost hear the, ``Well I really would not want to live that
way if that were me.'' But it is not them, and it is not the
job of the lawyers or the doctors or the guardians or the
judges to project their feelings on someone with a disability.
As my colleagues on the panel have pointed out, and in far
better terms than I could ever do, the reality of what a person
with a disability experiences is known to them and can be
experienced. And as one of the commentators on Fox News pointed
out to me when I told him that really our goal in the Schiavo
case, after Congress passed the law, was to get the case in
front of a jury, and he was a little bit surprised about that
because he assumed, like many people did, that this was just a
bunch of crazy pro-lifers who were out to keep somebody who
really wanted to die alive. But the fact of the matter is that
Judge Greer himself abrogated Florida law when he found that
Terri was partially cognizant of things and that, as a matter
of fact, under Florida law she was not in a persistent
vegetative state. And he was quite shocked. He said, ``Do you
really want to go to a jury? Why?'' And the answer is, ``Well,
we really do need to know what her condition is.''
Before we start making distinctions and make determinations
that can never be reversed, we need to know what is the actual
condition of the patient. We would expect that in an informed
consent proceeding for a person who does not have any
disabilities but who is about to undergo some kind of
corrective or even cosmetic surgery. And there is no excuse for
not doing it in the case of a person who is alleged to be in
either a persistent or a minimally conscious state.
The problem I think is twofold, especially in dealing with
severe brain injuries: We really do not know what happens in
the brains of people who are in these conditions. The
technology exists now to start to learn how they deal with
things. In fact, it was extraordinarily frustrating for me as
one of the attorneys when we were in court and the judges would
say how do you intend to prove X? And we would say, ``Your
Honor, we have these witnesses right here, we can just swear
them.'' ``Well, we do not really want to hear about that right
now. Let us go on to the next one.'' And we would say, ``Well,
we have got these witnesses that we can swear and they can tell
you about that.'' ``Well, no, we do not really want to hear
about that now.'' And at the end, what they basically decided
is that they did not really care about the evidence because, in
the end, people like Terri probably really would not want to
live that way anyway.
And so, as Mr. Sedlmeyer pointed out, doctors assume a lot.
The medical textbooks are replete with all kinds of quackery
that today we recognize as quackery, that 15 years down the
road we recognized that we had an obligation to people.
The courts simply do not get it either. They will rely on
doctors who, as Dr. Cranford in the Terri Schiavo case pointed
out to me, he said, you know, they really did not cross-examine
me very well. He said, of course, if somebody would have asked
me, I would have said that Terri Schiavo should have been put
in a functional MRI machine and we should have seen how her
brain worked. But the court would have not gone along with it
and neither would Michael Schiavo. Well, the fact of the matter
is, as Ms. Adamson put it, we would not starve Scott Petersen
to death because under the Geneva Convention that is considered
a horrific crime. But in the case of Terri Schiavo, the judge
himself recognized that she might have been cognizant of what
was happening to her, and we certainly believe that she was.
So what you have here is a debate that focuses on whether
people should be allowed to die. Dr. Young talked a lot about
the statistics and how many people, and, gee, we really do not
want to be getting involved in these processes. Well, the
government is involved in these processes. It has been involved
for a long time under Medicare and Medicaid. And as a matter of
fact, Terri Schiavo, who was not dead yet and who was not
dying, was in a hospice. My own view is that somebody ought to
be looking at the Medicare and Medicaid problems associated
with that one, because beside her brain injury, she was as
healthy as a horse and that is why it took her so long to die.
So that what I think we have here in the case of people
with disabilities is there is a lot of projection that goes on.
People who we might call in other context do-gooders are really
paternalistic. And as Ms. Adamson pointed out, all you really
need here is for people with disabilities to get the same
rights as everyone else. But, you know, we have a system in
which people with disabilities and foster kids get lost. And if
you look at Terri Schiavo's case, and I know I am out of time
and I will be done in 1 second, the Florida Department of
Children and Families had an obligation for 15 years to look in
on Terri Schiavo, but they lost her just like they lost those
kids in foster care. And they could not even show up on the
last day at the hearing. They said they were going to be in the
Federal court to support us, but they did not even show up for
the hearing then. So we have a lot of people paid for with
Federal money who are asleep at the switch. I will leave it at
that. Thank you, Mr. Chairman.
Mr. Souder. Well one of the important things about this
panel is that none of us move probably an hour, 30 minutes,
without somebody bringing up cost pressures. In other words,
when we go back to our offices we will read memos, we will read
articles, we will have groups come in on health care. We hear
this constantly. And to have a human face on the tradeoffs we
make is really important because it is so easy to just move the
numbers around and look at the numbers. These are tough
decisions because when dollars are spent on high-risk cases, it
means there are less dollars for other things, and how we
prioritize this. We need to know the human faces and what moral
and ethical decisions we are making, and what less than medical
knowledge decisions we are making, and how the legal process,
Congressman Cummings said earlier, for all kinds of children's
cases we have advocates and guardians, how do we work through
this kind of process. It is amazingly difficult. But you have
really put a human face on this.
Now in a question that we have had several times, and I
just want to make sure we get this on the record to clarify, we
have had several references today to Scott Petersen, whether or
not there is pain, one member said earlier and I heard all over
the media, that this is not painful, Ms. Adamson had a little
bit different type of testimony, and if you want to start with
this one, but even at the end process, if it is so painless,
why would we not use that process as opposed to the electric
chair? Maybe Mr. Destro can respond. And even if it is
painless, if you can drug somebody enough, does that mean it is
right? Those are some fundamental questions here. Anybody want
to talk to that?
Ms. Adamson. Well, that is exactly one of mine. With Terri
Schiavo, if she was, in fact, like they are saying, not able to
feel anything, then why give her all that morphine?
Ms. Coleman. There is an issue here about end of life,
actual end of life care for people who are eminently dying.
When my father died of bone cancer, in the last 5 days of his
life he stopped consuming; he did not want to drink or eat. And
he was in hospice at home and getting very good care. We
moistened his mouth and provided the medications. I think that
it would have been painful to him to get fluids because he was
physiologically shutting down, he was in renal failure.
That is not the same thing as taking away food and water
from a healthy person or even an ill person who has still got
time ahead of them. What has happened is that some of these
bioethicists have conflated these issues. They have gone on
television and told everybody that the one situation is the
same as the other. And because so many people have been through
the other, they think that we are lying. It does not make any
sense, but it does seem to be how hard this agenda has been
pushed with falsehood, really.
Mr. Souder. Mr. Destro.
Mr. Destro. Mr. Chairman, if I can just add. I think one of
the most telling parts of the Terri Schiavo story is that her
guardian, during the period of time in which Terri's law was
applicable, he was all over the news media, on CNN,
particularly, they had him on, and they really gave the
impression that he was a doctor. He did have a doctorate, but
his doctorate was in public health and his specialty was in
health care finance. He was appointed as Terri Schiavo's
guardian. Now why someone with a doctorate and a specialty in
health care finance is looking at the brain capabilities of
someone in allegedly minimally conscious state, I do not know.
But I think that fact alone tells you a big story.
Mr. Souder. Mr. Destro, and whoever else on this panel may
know the answer to this question, how common are these cases or
similar cases, and what numbers are we dealing with? You heard
Dr. Young say 2,500 in the one study was an estimate. What
familiarity do you have, and what kind of range and type of
cases are we talking?
Mr. Destro. Well, I think there is a large range of cases.
I think if you are talking about people who are in a persistent
vegetative state, if you take, on the one extreme, people who
are in a coma, and then you take people who are just affected,
like my great aunt is, with dementia, the beginning stages of
Alzheimer's or dementia, if people are developing these mental
disabilities, all you need to do is go down and find the
nearest nursing home and walk down the hallways and see how
people are treated there. We treat them as warehouse patients.
And there is a lot of those cases, and the Federal Government
is picking up a lot of the tab. The Schindler family certainly
would have been happy if they had sent Terri home. It would
have been a lot cheaper to have her at home than if we had had
her in this hospice, that I am absolutely sure that the Federal
Government paid for.
My point is that I think this population is quite a bit
larger than people make it out to be. And it is in the lack of
rehab where I have my concerns. We know enough now, U.S. News
and World Report, USA Today, all these things are coming out
with all the magical ways in which the brain works. And we
really do not know what that rehab is doing and what effect
that attempt at least to mainstream Mr. Sedlmeyer's daughter is
having on her. We will never know unless we can open her up to
the point where she can tell us.
Mr. Souder. Ms. Watson.
Ms. Watson. I guess it is attorney Destro?
Mr. Destro. Yes, ma'am.
Ms. Watson. What are you asking of Congress? As an
attorney, are you asking us something along legal lines to
determine when a person gets cutoff from life support? Are you
asking for us to play role in the decisions? It is not clear to
me. I would like to take this off of the Terri Schiavo case;
that is one case. And as I understand, there are thousands of
them. I am trying, for my own edification, to see what role
people out there want Congress to play in these decisions. So
as an attorney, can you enlighten us. What is it that you would
be seeking?
Mr. Destro. That is a very good question. I appreciate your
asking it. I think if we had a clearer answer in the Schiavo
statute, it would have been helpful. What I would say is that
we want to make sure that for every Federal dollar spent the
patient or the patient's advocate--and in cases where there are
not advocates for the patient, that there should be some--that
the patient or the patient's advocate has the highest level of
informed consent and procedural due process possible. If we go
back many, many, many moons to one of the worst civil rights
cases that has ever been decided, which is Dred Scott, Justice
Tawney talked about Black people not having any rights that
White people were bound to respect. And what I am telling you
is that it is in the process, that is why we have a due process
clause, it is in the process by which we deal with people with
disabilities that I think the discrimination takes place. And
so what I would like to see Congress do is craft some rules
that talk about the process that you go through in the
decisionmaking process.
Ms. Watson. Relative to State courts, district courts? I am
trying to pin down--see, this was an individual case.
Mr. Destro. Yes.
Ms. Watson. And I am not sure if we had a role to play in
that decision. There has been a lot of critique on the various
levels of courts that were involved in this decision. And so,
as an attorney, when you say an ``advocate,'' this would not be
the guardian, this would not be the family, this would not be
the medical professional. I am trying in my mind to narrow down
what role, what responsibility we have. And are you talking
about changing the courts? What is it that you see there is a
gap or a loop and we need to fill it?
Mr. Destro. Well the first gap would be in hotly disputed
cases, like you had. I would suggest strongly that you amend
the habeas corpus rules to allow for a due process review, just
like you would in a Scott Petersen case. But on the other end
of the spectrum, I think that we desperately need in Federal
programs training for judges, for advocates, for court-
appointed special advocates, and for guardian ad litem with
respect to the reality of the problems of people with
disabilities. And that I do think is an appropriate Federal
role.
Mr. Souder. Ms. Watson, could you let Ms. Coleman respond.
Ms. Watson. Yes, Ms. Coleman.
Ms. Coleman. To answer part of the question with a study,
there have been a number of studies of caregiver family members
of people with Alzheimer's, in one that was reported last year,
it was about the sixth of such, it had found that the caregiver
family member underrated the quality of life of the individual
with Alzheimer's lower than the person themself rated their own
quality of life with Alzheimer's. This sixth study tried to
figure out why. And they learned that the caregiver was
projecting their own personal misery at the burdens of
caregiving onto their relative and thereby underrating their
quality of life.
Now the disability community has been kind of locked out of
all these discussions. But I just want to say, to coin a
popular phrase, well Duh. We know this. This is the way the
world is, that it is not uncommon. Many caregivers are not like
my co-presenter here today. So people with disabilities feel
that we need protection, legal protection for those situations
where our existence is not respected, be it by family members,
health care providers, all kinds of folks. We still feel that
our rights deserve, we deserve equality under the law, and
there should not be a cognitive test for personhood under the
Constitution of the United States.
Ms. Watson. Many years ago, Public Law 94-142 specified,
and I think you might know that, in education what needed to be
done for the disabled. And I feel the disability community has
been very strong and up to the challenge in the past. What I am
trying to get out, and maybe this panel is not the right one,
and maybe this committee is not the committee, maybe it should
go to Judiciary, what is it that all of you here who came to
testify would like to see us do at the Federal level in terms
of refining the law? We do not make laws for the States; we do
over-arching laws that are national. So, what is it that you
would like to see us do for the disabled community? Can anyone
address that?
Ms. Coleman. I think that what we have been trying to do is
come together as a community, the same groups and others as the
ones you were referencing who worked on Public Law 94-142, but
we have not yet had the time, given the rush of this process,
to really try to bring together all the diverse communities
both within and without the disability community to iron out
what do we think would work best.
We do think that there needs to be some kind of substantive
standard. We would certainly be willing to look at what
Congressman Weldon was talking about earlier today, and perhaps
there are other ideas, and we would like to be able to bring
them back in an appropriate way, perhaps the committee that you
are suggesting, Judiciary. We are here to work this through.
I do not think there are really easy answers about the
substantive response. I do think, though, that we need
information and data that has not been collected. We feel that
the failure to collect that data has been, to some extent,
engineered by the bioethics agenda, which is about creating a
standard for health care rationing we think that has to do with
based on disability. We would like to see that looked at and
sorted through and get real data to work with.
Ms. Watson. Maybe let me just suggest, if I have a minute,
Mr. Chairman, Danny Davis, Representative from Illinois, has
H.R. 910, but it deals with Medicaid and community-based
attendant services.
Ms. Coleman. MiCASSA. We support that.
Ms. Watson. Yes. And I would think you might want to get in
touch with the sponsor of this bill. It is moving I guess on a
track, but you would have time, I am sure, to meet with your
communities and maybe suggest some amendments if this is not
inclusive enough. You might want to get in touch with office as
to some ideas that the Association comes up with.
Ms. Coleman. I think we will talk to the group that is the
lead sponsor of that. I am from Illinois, so it was actually
Congressman Davis that helped me connect up with this hearing
today.
Ms. Watson. Thank you, Mr. Chairman.
Mr. Souder. Thank you. Mr. Cummings? And I know, Ms.
Coleman, if you need to leave, you have a plane.
Ms. Coleman. Yes, I do. Thank you.
Mr. Cummings. Mr. Coleman, if you leave, I just wanted to
thank you. And I want to say to all of you, I thank you for
your testimony. I think the sad part about this entire thing is
all about we are in a political atmosphere. I think politics
has just made this total thing a mess. And the sad part about
it is that a lot of times when you get the political piece in
it, you forget about the disabilities community that you talked
about. I know that when this issue came before us, a lot of us
did not like the idea that it was brought before us, but we had
to make decisions. It was a tough decision, talking about
Schiavo now, and the interesting thing is that I think most
Members of Congress when they look at this from a disabilities
standpoint, they have to at least pause and say let us really
look at this very carefully. The sad part about it is that when
the politics comes in, the considerations become more difficult
to make because it all becomes a part of a whole ball of wax,
sadly.
What I am saying to you is, I listened very carefully to
Ms. Watson's questions, and one of the things I thought about
as she was asking the question, I think we all want to, I am
sure Chairman Souder does too, want to come to some conclusions
and try to figure out how do we be fair and protect those who
are vulnerable. All of you, the stories have been just
incredible.
Ms. Adamson. Mr. Cummings, could I say something?
Mr. Cummings. Sure.
Ms. Adamson. I want to mention, I have had an incredible
recovery. I am still paralyzed, but I have had 10 years in and
out of rehab. Had it not been for my husband being an attorney
and screaming and yelling to get the insurance company and the
doctors to give me treatment--and I had private insurance, now
look at the people who do not have any insurance--they wanted
to ship me off to a skilled nursing facility. I cannot tell you
around the world how many e-mails I get from families who are
told this is a hopeless situation, give up, and the families do
not want to give up. And had it not been for my husband
fighting for me, and then I had to be willing to do the rehab
not knowing if I would ever get better. I think that was the
most scariest thing for me, not having the answers but trusting
that I just had to live in the moment and take it day by day
and give it my best effort. So you are looking at somebody who
has had a lot of rehab. Unfortunately, people that do not have
health care insurance, they do not have an advocate who is that
squeaky wheel, do get shipped off and warehoused.
Mr. Cummings. And not only get shipped off and warehoused,
but often die.
Ms. Adamson. Yes. And what is scary, too, is that
rehabilitation program that I went into in 1995 is no longer
available; 20, 30 years ago, a patient would be looking at 9
months in the hospital to recover.
Mr. Cummings. Excuse me. Dr. Coleman, I understand. You
look like you are trying to be very polite, but we do not want
you to be so polite that you miss your plane.
Ms. Coleman. Thank you.
Mr. Cummings. Excuse me, Ms. Adamson.
Ms. Adamson. But I wanted to say--what was I saying?
Mr. Cummings. You were just talking about your
rehabilitation and a program that no longer exists that existed
back then.
Ms. Adamson. Right. Now, you are lucky if you can get 6
weeks and they want you out. That is the scariest thing to me.
Based on the fact that I was 33, they looked at it, as opposed
to someone who was in their 70's or 80's, I got turned down by
rehabilitation as well because they felt that I had no chance
of recovery. And I went in on the spinal cord team, not the
stroke team, because of my condition. So had I not had an
advocate who was going to fight, I would not be sitting here.
Mr. Cummings. I think that Senator Obama has an expression
that I would use so often, and it is just so accurate. He says,
``Sometimes in our society we have an empathy deficit.'' I
think that we need to figure out how it is that we can be fair
to all of us, period, to ourselves. It seems like everybody
kind of thinks that they will never find themselves in these
positions, or they will never have a family member in these
positions, and so they kind of just float on down the road. But
these things are happening every day.
I really do appreciate you all coming in and telling the
Nation and telling us about your situations. I think it has to
cause all of us to just pause and figure out, again, like I
said, what we can do to be fair, to make sure that we are not
just guided by financial considerations. Because let me tell
you something, if it is just finance, a whole lot of people are
going down the drain, period. I think we have to also look at
how is it that we can look at our Medicare/Medicaid system and
see what it is that we can do within that system to try to come
up with that fairness and value everybody's life.
Mr. Sedlmeyer, I want to thank you, too. When I listened to
your testimony, I could not help but be moved when you said one
of your favorite roles is being a father. I can relate. I think
you said a lot for fatherhood and your wife has said a lot for
motherhood, too. I am just glad that you were here to share
your story, and you too.
Mr. Destro. Mr. Cummings, if I could just add something
just briefly. I think that in one respect the question really
is not how can we be fair. I think the question is really how
can we be informed and how can caregivers be informed. As a
matter of informed consent, all of us have the right to choose.
But the choice should be based on facts out there. And I think
that the Federal Government has a superb role to play in making
sure that caregivers are well-informed. If there is going to be
Medicare or Medicaid payment, that the caregivers need to be
trained and they need to be well-informed.
I found out during the course of the Schiavo litigation
that just a superb judge in King County, WA, set up the court-
appointed Special Advocate Program because he noticed that in
juvenile courts these people in guardianship proceedings just
were not getting good representation, either by the attorneys
or by their special advocates. And so what he set up was a
training program. And it seems to me that judges have to do
mandatory continuing judicial education, lawyers have to do
mandatory continuing education. It seems to me that we would
all be better off if we understood the nature of these
conditions. And I think that is something that you all could
really do. Thank you.
Mr. Cummings. I know in our State courts we have quite a
few judges in each county. In Baltimore, for example, there may
be 35 judges and 2 or 3 of them are assigned to these kinds of
cases. So it would not necessarily require the training of all
the judges, but some who would deal with these.
Mr. Chairman, as I close, I would just ask unanimous
consent that the statement of Arthur Kaplan with the Department
of Medical Ethics, University of Pennsylvania, be admitted. We
had wanted him to appear but he could not. And that the case of
Cruzan v. Director, Missouri Department of Health, a Supreme
Court case, 497 U.S. 261, be made a part of the record.
Mr. Souder. Without objection, so ordered.
Congresswoman Watson, do you have anything?
Ms. Watson. Yes. I, too, would like to thank all of those
who took the time to come today. I represent the State of
California, Los Angeles, and I served as chair of the health
and human services committee for 17 years. We had cases like
this in front of us often. So what we did, what I did was carry
legislation to require every single hospital to have a
biomedical committee that would discuss these end of life
issues. As was said by Representative Cummings, we are
political figures and very few sitting in our chambers, I was
in the Senate, were medical doctors. But we required every
hospital that served the public to have a biomedical committee
to discuss these ethical and moral issues. It was very
difficult to deal with them from our position.
No. 2, we argued against allowing the HMO movement, health
maintenance organizations, because, Ms. Adamson, they did
control the amount of hours and time, you would dial into a
number and the person at the other end can tell you whether
that is a particular service or procedure that could be
provided. And I think there was something wrong with that. What
we did, we had to put it into the hands of those people who
were trained. So I carried legislation that said we should have
informed consent when you do an invasive treatment, so that the
patient along with the provider could exchange information and
raise the right questions, so when a patient made a decision to
go ahead, that patient would know all about it. So there are a
lot of things that need to be done. The problem is we have 50
States.
Ms. Adamson. I am in California, too.
Ms. Watson. So I am trying to glean out of this, Mr.
Chairman, just what we can do. Also in our State, we have
continuous education required for not only our justices, but
our judges and attorneys at will. But it is always out there.
You know, there are new technologies, new medical provisions,
and methods and so on that change rapidly. And so how you
grapple with this and not get specific to an individual case is
really a challenge that we have.
So, if any of you, or all of you, would like to write to me
and enlighten me on what we could do, I would be happy to
consider it. Because, believe me, and I am sure the Chair also,
there are so many, on this Schiavo case, there are so many
intricate facts that we just do not know, and I understand it
was heard before 24 judges in 6 courts, and there was
representation on both sides, and so on. So I wanted to get
away from a specific case, not having all the facts and not
having all the professionals in front of us. But I would
entertain any kind of information you provide me with.
Ms. Adamson. Well we may just have to do lunch because I am
from Los Angeles. I may write to you. [Laughter.]
Ms. Watson. Good, and I would welcome that to help us
through this.
Ms. Adamson. I think, yes, we need to clarify the rights of
the disabled.
Ms. Watson. Thank you, Mr. Chairman.
Mr. Souder. Do any of the witnesses have any closing
comments?
Mr. Destro. I do have one, and that is, I think we should
make sure that we try and understand that not all of the things
we are talking about are very expensive. One of the things I
have learned in watching my wife, who has a doctorate in social
work, work through a national training program on adoption
awareness, crisis pregnancy counselling for women with
unplanned pregnancies, is that many times the advocates simply
just do not know. And these training programs are
extraordinarily cost-effective. And in the course of that, I
came to know an excellent nurse practitioner who has done quite
an interesting job in training judges, domestic relations
judges. One of the most effective ways of judges keeping
control of violent people in their courtroom, which we saw down
in Georgia, is to have some food, crackers, in their drawer,
because people who have a can of coke or some crackers to munch
on do not shoot people.
Ms. Watson. Give them some chocolate.
Mr. Destro. Exactly. And it makes them feel good. But a lot
of this stuff is a lot more cost-effective if you give control
back to people and do not leave it in the hands of the so-
called experts and committees. As my former colleague and
friend on the Civil Rights Commission, Mary Frances Barry said
during a discussion of AIDS related discrimination about 15
years ago, and she pointed right at one of the bioethicists,
and I will leave his name out of the record today, and she
said, ``How do you get to be one of those? Do you just hang
your shingle out and become a bioethicist?'' There is no
question that there is an ideology there and that it is at odds
with what I believe are the duties that we all have to our
neighbors and friends with disabilities. They are more
concerned about the finances than we are. So it seems to me
that a lot of the stuff that we can do is actually pretty cheap
and cost-effective if you just give it back to people and let
them use their ingenuity. Thank you.
Mr. Souder. Mr. Sedlmeyer, do you have any comments?
Mr. Sedlmeyer. Am I on? Yes, I would like to make a
comment. I would like to direct it to Ms. Watson, because you
have said more than once tell us how we can help you, tell us
what we can do. And from my perspective as a caregiver, I would
like to suggest two things that you might be able to do.
One, of course, and I know we are very limited on this, but
money does make a big difference. Having the funds available to
give the care that is needed to one that you love is
indispensable. And it is through programs like the Medicaid
Waiver Program that we have been able to keep Valerie at home.
And I know you have to make difficult decisions on budgeting,
and I know the Medicaid funds to the States have been reduced,
and we understand and we are willing to make those kinds of
financial sacrifices to keep our daughter at home. But as you
pondering your budgets, your Medicaid, your Medicare budget,
please keep in mind those programs that may in the long run
yield beneficial results in terms of the bottom line. I think
the longer we can keep Valerie at home with us, the better it
will be for everyone--her, us, and the whole health care
system.
Second, I have heard Mr. Cummings address this, you all say
you are political creatures. But you know what? You are leaders
of this Nation and your perspective on issues of this magnitude
is important. In a sense, you all have bully pulpits. And one
of the things that really concerned me early in Valerie's life,
it was at the point where her feeding tube was going to be
inserted--I did not say this in my testimony, but Valerie is a
twin, her twin sister is Vanessa, Vanessa is perfect in every
way--my pediatrician came up to me before the surgery and he
said to me, ``If something goes wrong during the surgery, what
do you want me to do?'' And I looked at him and I said, ``I
want you to do the same thing that you would do for her
sister.'' So, you see, in some sense it is all a matter of
perception.
I believe you in Congress and you in the Senate have the
ability because of your positions, because of your access to
the media, because you have a strong voice in this Nation, you
can change the perception of people in our Nation to treat, as
we have heard all the other ones on this panel say, we do not
want special rights either as individuals or for our children,
we just want the same civil rights as everyone else.
Mr. Souder. Thank you very much. And I think on that note
we will conclude. I want to thank Ms. Adamson, too. I watched
you multiple times on television during the national debates,
as well as Mr. Destro.
We are in an interesting situation here in Congress. Had we
been discussing this issue a few weeks ago, everybody in the
world would have been focused very closely. But this is the
real business of how we govern, not kind of a TV show. We had
both good and bad come out of that whole process in Florida.
The good thing was we had some public discussion and kind of
first awareness. The bad thing is now people are so confused
that it may be more difficult in fact to move legislation.
It got into the political arena, which happens with any
bill we move through. But we knew potentially by coming back
that Sunday night, when were in a very kind of end of the
alternative road, that it was going to get to become a
political football, which it did. All of a sudden what was
bipartisan support and trying to deal with the broader issue
became focused on one case, very confused, and family
questions, what did the judges see and not see. And in reality,
we have to learn from that experience, when it was an
experience that was so public that now people are just loaded
with opinions that may or may not be factual, and all of us are
confused, Members of Congress are confused, because we all
tended to choose sides and only wanted to get the information
that came from that side.
Now we have to try to sort through actual legislation and
go back and kind of reinvent the wheel to where we were before
the case, but with now a much more quasi-informed public,
quasi-informed Members, and at the same time everybody
understanding we have some problems around the country. Often,
these types of cases, sometimes it was like, as I argue, the
Judge Thomas hearings for the Supreme Court did more to define
sexual harassment in America, which was not necessarily
relevant to anything he did, but because people watched the
debate, people changed their behaviors and they started to
adjust and learn.
Hopefully, as an oversight committee, this helps move that
forward. As legislation moves, it will move through different
committees, and in our HHS oversight we will continue to look
at this, and we also have Justice Department oversight. So as
we look at this among the many issues we deal with, this has
been a very helpful first hearing for you to put a human face
on it, and we thank you very much for taking the time to do so.
With that, this subcommittee stands adjourned.
[Whereupon, at 4:52 p.m., the subcommittee was adjourned.]
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