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23–407 PDF 2005

FEDERAL HEALTH PROGRAMS AND THOSE WHO

CANNOT CARE FOR THEMSELVES: WHAT ARE

THEIR RIGHTS AND OUR RESPONSIBILITIES?

HEARING

BEFORE THE

SUBCOMMITTEE ON CRIMINAL JUSTICE,

DRUG POLICY, AND HUMAN RESOURCES

OF THE

COMMITTEE ON

GOVERNMENT REFORM

HOUSE OF REPRESENTATIVES

ONE HUNDRED NINTH CONGRESS

FIRST SESSION

APRIL 19, 2005

Serial No. 109–68

Printed for the use of the Committee on Government Reform

(

Available via the World Wide Web: http://www.gpoaccess.gov/congress/index.html

http://www.house.gov/reform

(II)

COMMITTEE ON GOVERNMENT REFORM

TOM DAVIS, Virginia, Chairman

CHRISTOPHER SHAYS, Connecticut

DAN BURTON, Indiana

ILEANA ROS-LEHTINEN, Florida

JOHN M. MCHUGH, New York

JOHN L. MICA, Florida

GIL GUTKNECHT, Minnesota

MARK E. SOUDER, Indiana

STEVEN C. LATOURETTE, Ohio

TODD RUSSELL PLATTS, Pennsylvania

CHRIS CANNON, Utah

JOHN J. DUNCAN, JR., Tennessee

CANDICE S. MILLER, Michigan

MICHAEL R. TURNER, Ohio

DARRELL E. ISSA, California

GINNY BROWN-WAITE, Florida

JON C. PORTER, Nevada

KENNY MARCHANT, Texas

LYNN A. WESTMORELAND, Georgia

PATRICK T. MCHENRY, North Carolina

CHARLES W. DENT, Pennsylvania

VIRGINIA FOXX, North Carolina

——— ———

HENRY A. WAXMAN, California

TOM LANTOS, California

MAJOR R. OWENS, New York

EDOLPHUS TOWNS, New York

PAUL E. KANJORSKI, Pennsylvania

CAROLYN B. MALONEY, New York

ELIJAH E. CUMMINGS, Maryland

DENNIS J. KUCINICH, Ohio

DANNY K. DAVIS, Illinois

WM. LACY CLAY, Missouri

DIANE E. WATSON, California

STEPHEN F. LYNCH, Massachusetts

CHRIS VAN HOLLEN, Maryland

LINDA T. SANCHEZ, California

C.A. DUTCH RUPPERSBERGER, Maryland

BRIAN HIGGINS, New York

ELEANOR HOLMES NORTON, District of

Columbia

———

BERNARD SANDERS, Vermont

(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

DAN BURTON, Indiana

JOHN L. MICA, Florida

GIL GUTKNECHT, Minnesota

STEVEN C. LATOURETTE, Ohio

CHRIS CANNON, Utah

CANDICE S. MILLER, Michigan

GINNY BROWN-WAITE, Florida

VIRGINIA FOXX, North Carolina

ELIJAH E. CUMMINGS, Maryland

BERNARD SANDERS, Vermont

DANNY K. DAVIS, Illinois

DIANE E. WATSON, California

LINDA T. SANCHEZ, California

C.A. DUTCH RUPPERSBERGER, Maryland

MAJOR R. OWENS, New York

ELEANOR HOLMES NORTON, District of

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

(III)

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

(1)

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

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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

3

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:]

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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

7

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

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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

9

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 bipartisan 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.

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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 direcVerDate 11-MAY-2000 10:45 Sep 27, 2005 Jkt 000000 PO 00000 Frm 00014 Fmt 6633 Sfmt 6633 D:\DOCS\23407.TXT HGOVREF1 PsN: HGOVREF1
11

tives. 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 estabVerDate 11-MAY-2000 10:45 Sep 27, 2005 Jkt 000000 PO 00000 Frm 00015 Fmt 6633 Sfmt 6633 D:\DOCS\23407.TXT HGOVREF1 PsN: HGOVREF1
12

lish 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:]

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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?

17

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 tranVerDate 11-MAY-2000 10:45 Sep 27, 2005 Jkt 000000 PO 00000 Frm 00021 Fmt 6633 Sfmt 6633 D:\DOCS\23407.TXT HGOVREF1 PsN: HGOVREF1
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scended 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

19

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.

20

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 usurpVerDate 11-MAY-2000 10:45 Sep 27, 2005 Jkt 000000 PO 00000 Frm 00024 Fmt 6633 Sfmt 6633 D:\DOCS\23407.TXT HGOVREF1 PsN: HGOVREF1
21

ing 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

22

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

23

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.

24

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:]

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29

30

31

32

33

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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.

35

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, longterm 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.

36

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?

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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 persistVerDate 11-MAY-2000 10:45 Sep 27, 2005 Jkt 000000 PO 00000 Frm 00041 Fmt 6633 Sfmt 6633 D:\DOCS\23407.TXT HGOVREF1 PsN: HGOVREF1
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ent 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

39

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?

40

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, coteaching 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 expenVerDate 11-MAY-2000 10:45 Sep 27, 2005 Jkt 000000 PO 00000 Frm 00044 Fmt 6633 Sfmt 6633 D:\DOCS\23407.TXT HGOVREF1 PsN: HGOVREF1
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sive 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.

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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:]

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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.

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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

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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:]

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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

68

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:]

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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.

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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

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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,

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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

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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

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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 testiVerDate 11-MAY-2000 10:45 Sep 27, 2005 Jkt 000000 PO 00000 Frm 00084 Fmt 6633 Sfmt 6633 D:\DOCS\23407.TXT HGOVREF1 PsN: HGOVREF1
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mony. 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

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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

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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.]

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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

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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,

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sometimes it was like, as I argue, the Judge Thomas hearings for

the Supreme Court did more to define sexual harassment in America, which was not necessarily relevant to anything he did, but because people watched the debate, people changed their behaviors

and they started to adjust and learn.

Hopefully, as an oversight committee, this helps move that forward. As legislation moves, it will move through different committees, and in our HHS oversight we will continue to look at this, and

we also have Justice Department oversight. So as we look at this

among the many issues we deal with, this has been a very helpful

first hearing for you to put a human face on it, and we thank you

very much for taking the time to do so.

With that, this subcommittee stands adjourned.

[Whereupon, at 4:52 p.m., the subcommittee was adjourned.]

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