[House Hearing, 109 Congress]
[From the U.S. Government Publishing Office]



 
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/
                               index.html
                      http://www.house.gov/reform











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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:]



    
    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:]



    
    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:]




    
    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:]




    
    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:]



    
    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:]




    
    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.]
    [Additional information submitted for the hearing record 
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