    [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
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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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