<DOC> [109th Congress House Hearings] [From the U.S. Government Printing Office via GPO Access] [DOCID: f:23407.wais] FEDERAL HEALTH PROGRAMS AND THOSE WHO CANNOT CARE FOR THEMSELVES: WHAT ARE THEIR RIGHTS AND OUR RESPONSIBILITIES? ======================================================================= HEARING before the SUBCOMMITTEE ON CRIMINAL JUSTICE, DRUG POLICY, AND HUMAN RESOURCES of the COMMITTEE ON GOVERNMENT REFORM HOUSE OF REPRESENTATIVES ONE HUNDRED NINTH CONGRESS FIRST SESSION __________ APRIL 19, 2005 __________ Serial No. 109-68 __________ Printed for the use of the Committee on Government Reform Available via the World Wide Web: http://www.gpoaccess.gov/congress/ index.html http://www.house.gov/reform U.S. GOVERNMENT PRINTING OFFICE 23-407 WASHINGTON : 2005 _________________________________________________________________ For sale by the Superintendent of Documents, U.S. Government Printing Office Internet: bookstore.gpo.gov Phone: toll free (866) 512-1800; DC area (202) 512-1800 Fax: (202) 512-2250 Mail: Stop SSOP, Washington, DC 20402-0001 COMMITTEE ON GOVERNMENT REFORM TOM DAVIS, Virginia, Chairman CHRISTOPHER SHAYS, Connecticut HENRY A. WAXMAN, California DAN BURTON, Indiana TOM LANTOS, California ILEANA ROS-LEHTINEN, Florida MAJOR R. OWENS, New York JOHN M. McHUGH, New York EDOLPHUS TOWNS, New York JOHN L. MICA, Florida PAUL E. KANJORSKI, Pennsylvania GIL GUTKNECHT, Minnesota CAROLYN B. MALONEY, New York MARK E. SOUDER, Indiana ELIJAH E. CUMMINGS, Maryland STEVEN C. LaTOURETTE, Ohio DENNIS J. KUCINICH, Ohio TODD RUSSELL PLATTS, Pennsylvania DANNY K. DAVIS, Illinois CHRIS CANNON, Utah WM. LACY CLAY, Missouri JOHN J. DUNCAN, Jr., Tennessee DIANE E. WATSON, California CANDICE S. MILLER, Michigan STEPHEN F. LYNCH, Massachusetts MICHAEL R. TURNER, Ohio CHRIS VAN HOLLEN, Maryland DARRELL E. ISSA, California LINDA T. SANCHEZ, California GINNY BROWN-WAITE, Florida C.A. DUTCH RUPPERSBERGER, Maryland JON C. PORTER, Nevada BRIAN HIGGINS, New York KENNY MARCHANT, Texas ELEANOR HOLMES NORTON, District of LYNN A. WESTMORELAND, Georgia Columbia PATRICK T. McHENRY, North Carolina ------ CHARLES W. DENT, Pennsylvania BERNARD SANDERS, Vermont VIRGINIA FOXX, North Carolina (Independent) ------ ------ Melissa Wojciak, Staff Director David Marin, Deputy Staff Director/Communications Director Rob Borden, Parliamentarian/Senior Counsel Teresa Austin, Chief Clerk Phil Barnett, Minority Chief of Staff/Chief Counsel Subcommittee on Criminal Justice, Drug Policy, and Human Resources MARK E. SOUDER, Indiana, Chairman PATRICK T. McHenry, North Carolina ELIJAH E. CUMMINGS, Maryland DAN BURTON, Indiana BERNARD SANDERS, Vermont JOHN L. MICA, Florida DANNY K. DAVIS, Illinois GIL GUTKNECHT, Minnesota DIANE E. WATSON, California STEVEN C. LaTOURETTE, Ohio LINDA T. SANCHEZ, California CHRIS CANNON, Utah C.A. DUTCH RUPPERSBERGER, Maryland CANDICE S. MILLER, Michigan MAJOR R. OWENS, New York GINNY BROWN-WAITE, Florida ELEANOR HOLMES NORTON, District of VIRGINIA FOXX, North Carolina Columbia Ex Officio TOM DAVIS, Virginia HENRY A. WAXMAN, California J. Marc Wheat, Staff Director Michelle Gress, Counsel Malia Holst, Clerk Tony Haywood, Minority Counsel C O N T E N T S ---------- Page Hearing held on April 19, 2005................................... 1 Statement of: Coleman, Diane, president, Not Dead Yet; Bob Sedlmeyer, Fort Wayne, IN; Kate Adamson, Redondo Beach, CA; and Robert Destro, professor, Columbus School of Law, the Catholic University of America...................................... 40 Adamson, Kate............................................ 67 Coleman, Diane........................................... 40 Destro, Robert........................................... 75 Sedlmeyer, Bob........................................... 62 Weldon, Hon. Dave, a Representative in Congress from the State of Florida........................................... 10 Young, Dr. Donald A., Deputy Assistant Secretary, Planning and Evaluation, Department of Health and Human Services.... 22 Letters, statements, etc., submitted for the record by: Adamson, Kate, Redondo Beach, CA, prepared statement of...... 69 Coleman, Diane, president, Not Dead Yet, prepared statement of......................................................... 43 Sedlmeyer, Bob, Fort Wayne, IN, prepared statement of........ 65 Souder, Hon. Mark E., a Representative in Congress from the State of Indiana, prepared statement of.................... 4 Weldon, Hon. Dave, a Representative in Congress from the State of Florida, prepared statement of.................... 13 Young, Dr. Donald A., Deputy Assistant Secretary, Planning and Evaluation, Department of Health and Human Services, prepared statement of...................................... 25 FEDERAL HEALTH PROGRAMS AND THOSE WHO CANNOT CARE FOR THEMSELVES: WHAT ARE THEIR RIGHTS AND OUR RESPONSIBILITIES? ---------- TUESDAY, APRIL 19, 2005 House of Representatives, Subcommittee on Criminal Justice, Drug Policy, and Human Resources, Committee on Government Reform, Washington, DC. The subcommittee met, pursuant to notice, at 2 p.m., in room 2154, Rayburn House Office Building, Hon. Mark Souder (chairman of the committee) presiding. Present: Represenatives Souder, Cummings, McHenry, Norton, Brown-Waite, and Watson. Staff present: J. Marc Wheat, staff director and chief counsel; Michelle Gress, Counsel; David Thommason and Pat Dequattro, congressional fellows; Melia Holst, clerk; Tony Haywood, minority counsel; and Jean Gosa, minority assistant clerk. Mr. Souder. The subcommittee will now come to order. Good afternoon and thank you all for being here for this important hearing. A special thank you to our witnesses, some of whom have traveled a great distance and all of whom are going to give us the benefit of their knowledge and experience today. The hearing today is ``Federal Health Programs and Those Who Cannot Care for Themselves: What are Their Rights and Our Responsibilities?'' We hope to examine the report provided by the Federal Medicaid and Medicare programs for the ordinary care of incapacitated citizens who are not in the dying process. The people we are talking about as incapacitated citizens cannot speak for themselves and cannot care for themselves. They necessarily require long term care of family, community or institutions to live. Although there are provisions within Medicare and Medicaid that address advanced medical directives of such individuals, the provisions do not address many issues surrounding the ordinary care of incapacitated individuals. These are issues that have been raised in light of the tragic Terri Schiavo situation and which now deserve our focused attention and exploration. First among these issues is whether, in the absence of some sort of advanced medical directive or express medical power of attorney, there should be a Federal presumption in favor of life so that a Medicare or Medicaid patient who is incapacitated is not denied ordinary care such as hydration and nutrition without due process and full exercise of their rights as human beings to fight their incapacity. This is our point of departure and although we may leave here with more questions than answers today, it is important to examine what types of treatment options are available for incapacitated citizens who are not in the dying process, whether the various legal instruments such as advanced medical directives or medical powers of attorney are sufficient and what protections exist for incapacitated individuals to ensure that their Constitutional rights of due process are met. At a minimum, our Federal programs should protect patients rather than pave the way to hasten their death but we do not have a Federal presumption where a person's wishes are unknown and unknowable. This creates a vacuum where someone else may determine that a patient's life is not one worth living and this is most definitely a slippery slope. Let me quote at length a homily given by Archbishop Galen which underlines the importance of staying vigilant against new developments in the law that run counter to a Judeo-Christian understanding of human dignity. ``If you establish and apply the principle that you can kill unproductive human beings then woe betide to all of us who become old and frail. If one is allowed to kill unproductive people, then woe betide the invalids who have been used up, sacrificed or lost their health and strength in the productive process. Poor people, sick people, unproductive people, so what? Have they somehow forfeited the right to live? Do you, do I have the right to live only as long as we are productive? Nobody would be safe anymore. Who could trust his physician? It is inconceivable what deprived conduct, what suspicion would enter family life if this terrible doctrine is tolerated, adopted and carried out.'' Archbishop Clemmons Von Galen was not speaking out as a consequence of the Terri Schiavo controversy. He anticipated it. Archbishop Clemmons Von Galen spoke these words from the pulpit on August 3, 1941 against a euthanasia program being instituted by the German government. The sermon was aimed at a specific policy and a specific time and place but he touched upon a recurrent theme that transcends place and time. It is a helpful warning from history to guide our footsteps on our uncertain post-Schiavo path. We have a variety of witnesses joining us today to help us with some of these important issues. Our first panel consists of Representative Dave Weldon of the 15th district of Florida. Congressman Weldon is an esteemed former member of the Government Reform Committee and former chairman of the Census Subcommittee of this committee. Congressman Weldon is also a medical doctor and brings his unique perspective and experience on Federal health care matters to this hearing today. Our second panel consists of Dr. Donald Young, Deputy Assistant Secretary for Planning and Evaluation, Department of Health and Human Services who in his medical practice has firsthand experience with end of life care. Our third and final panel consists of four witnesses: Diane Coleman, president and founder of a disability advocacy rights group called Not Dead Yet; Bob Sedlmeyer from my congressional district in Indiana. Bob has a 19-year-old daughter, Valerie, who has been incapacitated since birth and for whom Bob and his wife, Cheryl, provide in-home care. Kay Adamson has had a severe stroke and experienced what is known as ``locked-in syndrome.'' Although she was conscious and aware, she was physically, totally unresponsive. At one point, her doctors withdrew all nutrition and hydration from her. Last, we have Professor Robert Destro from the Columbus School of Law at the Catholic University. He served for 6 years as a commissioner with the U.S. Commission on Civil Rights and led the Commission's discussions in the areas of discrimination on the basis of disability. I would like to yield to our distinguished ranking member, Mr. Cummings of Maryland, for an opening statement. [The prepared statement of Hon. Mark E. Souder follows:] <GRAPHICS NOT AVAILABLE IN TIFF FORMAT> Mr. Cummings. Thank you very much, Mr. Chairman. One of the responsibilities I take most seriously as a legislator involves protecting the interests of the most vulnerable segments of our society. Individuals who are incapacitated by reason of illness, injury, birth defect or advanced age are among those whose rights and interests we must be most vigilant in protecting. Decisions affecting a patient's course of medical treatment are, of course, among the most personal and consequential decisions that a person can make or that can be made on a person's behalf. When a person cannot make such decisions on his own, society must do what it can to ensure that the decision is made in the best interest of the patient's health and/or in accordance with the patient's own wishes and legal rights. In some instances these interests can be difficult to sort out, particularly when it comes to deciding whether to provide or withhold life sustaining treatment for a severely incapacitated person who stands no realistic chance of improving. The Supreme Court has made it clear that a person has a Constitutional right to refuse life sustaining treatment if that is what he or she wishes. In the absence of a clear advanced directive or living will document, however, determining what a patient who cannot communicate would want can give rise to an awful dilemma for the family or guardian of the patient. We all witnessed this in the controversial case of Terri Schiavo and perhaps many of us have faced this kind of decision in our own families. Certainly there can be few decisions more grave or heart wrenching for a family to confront whether or when to give up on the life of a loved one who may be a shadow of his or her former self or for whom the medical outlook is terribly grim or bleak. For that reason, I think the Schiavo case teaches us that the most constructive approach we can take as policymakers is to help families to avoid such dilemmas by encouraging the use of living wills and by educating members of the public about their rights to elect or to refuse life sustaining treatment should they become severely incapacitated. According to a 2002 study funded by the Robert Wood Johnson Foundation, only 15 to 20 percent of Americans have living wills. That is why I am an original co-sponsor of legislation that will be introduced in the House by Representative Sander Levin of Michigan, the ``Advanced Directives Improvement and Education Act of 2005'' co-authored with Senator Bill Nelson of Florida which would ensure that a person's advanced directive is known and respected, that a person can obtain professional advice in preparation of such a directive, and that the information on State laws is broadly available to those who wish to exercise their rights. While I supported the Schiavo bill, I think the best role for Congress to play in moving forward is to empower our citizens to make these crucial decisions with adequate planning and forethought. Moreover, Congress should give thorough and deliberate consideration to any changes we might contemplate making to the existing system. There can be no easy or painless answer in an end of life decision scenario. We can make it easier for families to be sure that the rights and wishes of their loved ones are honored and protected when tragic circumstances give rise to so awful a predicament. That said, Mr. Chairman, we all know there are many perspectives and many factors, both legal and moral to consider when it comes to how we formulate policy on caring for those who lack or lose the ability to care for or make decisions for themselves. We will hear some of those perspectives today and I look forward to the testimony of each of our witnesses. With that, Mr. Chairman, I yield. Mr. Souder. Thank you. We have been joined by the vice chairman of the subcommittee, Mr. McHenry of North Carolina. Mr. McHenry. Thank you. I would like to first thank all of our witnesses today. I look forward to hearing or reading your testimony. Thank you, Congressman Weldon, for being here as a medical expert. We certainly appreciate your leadership on this tough and important issue. Today, we will be examining the support given by Medicaid and Medicare programs for the ordinary care of citizens who are incapacitated but are not dying. That is the key distinction we are looking at, these individuals who are not dying and whose rights must be protected. The incapacitated cannot speak for themselves but as citizens they have the same right to life as you and I, rights guaranteed by the Constitution. People who are incapacitated require long-term care provided by family, community and medical institutions in order to survive. Medicare and Medicaid do not address many of the issues surrounding the ordinary care these helpless people need to survive. This is an issue that recently came to light through the tragic death of Terry Schiavo. We need to fill in the gaps in the current Medicare and Medicaid system so that in the future no one else must suffer like Ms. Schiavo and the Schindler family. First among these issues is whether there should be a Federal presumption in favor of life in the absence of an advanced medical directive or express medical power of attorney. This was the crux of the situation involving Ms. Schiavo, an individual who was incapacitated, but in many medical opinions, was not dying and where there was medical uncertainty as to her wishes due to the lack of an advance medical directive or power of medical attorney. A presumption in favor of life would ensure that a Medicare or Medicaid patient who was incapacitated like Ms. Schiavo, is not denied ordinary care such as hydration or nutrition without the due process that is guaranteed all citizens including those on death row. This is a very complicated issue, made more difficult by the fact that State laws are inconsistent and there is currently no Federal provision to resolve these conflicts. However, we must work through these areas of confusion to examine three things: first, the various treatment options available to incapacitated citizens who are not dying; second, if the legal instruments meant to protect them are sufficient; and three, whether there are enough legal protections to ensure that the Constitutional right to due process of capacitated individuals is met. Currently, there is no Federal presumption when a person's wishes are unknown. I believe that in such situations where there is a legitimate due process question, we must always side on the side of life. Life or death is the most important question and the most important decision. As such, it must not be made for someone else when there is even the slightest possibility of doubt as to their wishes. Human life must be protected. We are very fortunate today to have four wonderful panels that will take on these questions and many others. I look forward to hearing this discussion, Mr. Chairman. Mr. Souder. Ms. Norton, do you have an opening statement? Ms. Norton. I am sorry I won't be here for much of this hearing, I have two other hearings going on at the same time. I am intrigued that the Criminal Justice Subcommittee would be having this hearing today. I am trying to fathom that in light of the areas in which you have traditionally concentrated. I certainly don't have any objection to the hearing. I think the Schiavo case raises issues that ought to be discussed in precisely this kind of setting as opposed to a setting forced upon us in the past. I very much regret, though, that this hearing did not become the opportunity as well to correct some of the impressions that were left in the wake of the Schiavo hearings. It questions the maligning of compassionate care at the end of life by hospices by members and others repeatedly talking about people being starved to death and people being deprived of water to their death when you don't have to be a professional to understand that hospices are embraced by Americans precisely because they help people avoid a painful death. They are regulated by the States, sharply regulated. I thought they did a huge disservice to allow stand. It would have been good to have someone here to speak to that issue. It would have been good if we were going to have this hearing to have some witness come forward to testify about living wills. Everywhere I go people virtually come up to you and say, make sure I have told you, now you know it and most of them are saying they don't want to continue to live under those circumstances but the point is, and perhaps one of the most important points driven home by the Schiavo case is the living will point. I would like to know more about that as long as we are having this hearing. I regret there is no witness who can testify as to that. Finally, I regret that there is not some expert there who could tell us the extent to which, and it is a huge extent, of families making precisely the decision that the Schiavo family made with respect to Terri. That is to say every day of the week, feeding tubes, if you will, are given up because either a court intervenes or because the family makes that decision. No family would ever make that decision if a dying person starved to death and experienced starvation or if a dying person experienced the need for water and was denied it. When virtually the entire neurological profession said that those feelings were impossible in a woman whose brain had dissolved to the extent that her brain had dissolved, it seems to me that the kind of fairness you are known for in this hearing would have required some witnesses to come forward to speak to at least some of those issues which are also involved. I note and I asked when I came in were there any other witnesses and they said there was a witness that could not attend and that the minority was given but I just raise these issues because I think the kind of discussion you have started here is an important one and I congratulate you for starting it. That is exactly what we need but I think we need to have all the elements brought into the discussion and they do not seem to be included in the witness list. I have two other hearings going on, literally, important hearings and I cannot stay for this hearing but I certainly have staff here so that I can begin to understand whether some of these issues were discussed. I thank you again, Mr. Chairman, for starting this discussion in the Congress, a vital discussion indeed. Mr. Souder. Thank you and if you could briefly explain the process of how this happened. At the beginning of this session, the Department of Health and Human Services was moved to our committee. As the gentlelady knows and everybody here, we can barely cover all the other things that we are covering but we start to occasionally have hearings in the Department of HHS along with the full committee, for example, the COX2 inhibitor hearings are going to be in the full committee and occasionally those hearings will be there and occasionally in this subcommittee. Ordinarily, this was going to be a full committee hearing. They asked to move it to the subcommittee and at my request, we have tried to have it not focused just on the Terri Schiavo case where it was originally headed and try to look at the issue from a broader perspective and hopefully not only this committee but others will look at it in many of the ways and aspects that you raise. Congresswoman Brown-Waite, do you have an opening statement? Ms. Brown-Waite. Yes, I do. I want to thank you very much for calling this hearing on how to best protect the rights of those who cannot care for themselves, including the terminally ill and those Americans who are incapacitated but not in the dying process. The controversy surrounding the death of Terri Schiavo hit close to home for all of us. One lesson we can take from her passing is the importance of creating a living will and completing a health care surrogate form. These forms make a person's wishes clear and ensure they are clearly documented and legally binding. I have agreed to co-sponsor House Resolution 217 which is a bi-partisan resolution encouraging all Americans to set forth their medical wishes through a living will. By drafting a living will, individuals are able to ease the burden placed on their loved ones by making serious medical decisions before they are incapacitated or unable to articulate their wishes to medical personnel. This oversight hearing also seeks to examine the Federal role in decisions relating to long term care of incapacitated Americans that rely on Medicare and Medicaid programs. The proper role of the Federal Government in these situations presently is not clear. We must, however, be very careful that we are not usurping any family decisionmaking given the importance of this issue raised by recent events. I thank the chairman for holding this hearing today and I look forward to our discussions and hearing from our very capable witnesses. Thank you and I yield back the balance of my time. Mr. Souder. Before proceeding, I would like to take care of a couple of procedural matters. First, I ask unanimous consent that all Members have 5 legislative days to submit written statements and questions for the hearing record and the answers to written questions provided by the witnesses also be included in the record. Without objection, so ordered. I also ask unanimous consent that all exhibits, documents and other materials referred to by Members and the witnesses may be included in the hearing record, that all Members be permitted to revise and extend their remarks. Without objection, so ordered. If there is a Member of the House or Senate who is testifying, they are always the first panel. It is customary to ask all our witnesses to testify under oath but as Members of Congress, we take that oath at the beginning of the year. Our first panel is Dr. Dave Weldon. Dr. Weldon. I would be very happy to take the oath again, Mr. Chairman, if you would like. Mr. Souder. Our first panel is Dr. David Weldon, a Member of the House of Representatives. Thank you and we would welcome your opening statement at this time. STATEMENT OF HON. DAVE WELDON, A REPRESENTATIVE IN CONGRESS FROM THE STATE OF FLORIDA Dr. Weldon. I am delighted to be here, Chairman Souder, and Ranking Member Cummings and members of the committee. I appreciate the opportunity to testify before the subcommittee and to discuss the issues surrounding the rights of the disabled, our responsibilities to protect the disabled in end of life decisions and the nexus of Federal health programs with regard to protecting vulnerable adults. As you know, I introduced H.R. 1151, legislation designed to give greater legal scrutiny to incapacitated individuals in situations like that of Terri Schiavo to ensure that before their life is ended by depriving of necessary fluids and nutrition, a final review be granted through the Federal courts. I want to thank you, Mr. Chairman, as well as the ranking member and Mr. Danny Davis of the committee for co-sponsoring that legislation. In addition, I am thankful to the broad spectrum of support we received on this issue from such people as the Reverend Jesse Jackson, Ralph Nader, Nat Hentoff and many others. This issue we are about to discuss today transcends party labels. By introducing H.R. 1151, I was attempting to address the deficiencies of a system that advocates starvation and dehydration of those who are dependent on others for their care. While many have taken from the Terri Schiavo a heightened interest in living wills, I believe it would be wise for us to broaden that discussion beyond legal documents. I was shocked to learn in a recently released report that 80 percent of States now allow doctors and hospitals to controvert the express wishes of individuals in those legal wills and advance directives. The problem goes deeper than not having the proper forms. That same report goes on to say that ``Increasingly health care providers who consider a patient's quality of life too low are denying life preserving measures against the will of patients and families and the laws of most States provide no effective protection against this involuntary denial.'' I encourage this committee to look at and consider deficiencies that exist in Federal laws that set conditions for participation in the Medicare and Medicaid programs and how essential care such as food and fluids are being dispensed. Medicare considers the provision of food and fluids through a feeding tube as a prosthetic medical intervention. Yet, the enforcement of this requirement is clearly lacking. To address this weakness, I believe it is imperative to create a substantive standard addressing when food and fluids can be withdrawn to ensure that the rights of incapacitated individuals are not violated. In my view, that standard would presume that vulnerable adults would want to be fed and given fluids unless they had expressly expressed otherwise. It is important that we err on the side of providing this type of care in the absence of an explicit written directive and that the Federal standard be expressed clearly to all health providers. Our legal system is weighted very heavily toward ensuring that we do not convict the wrong person and we are improving upon this system every day, as an example with the addition of DNA evidence in particular. Should we not also as a society err on the side of preserving the life of an incapacitated individual? Incapacitation is not something any of us would choose but to bring about an end to that condition based on hearsay or anecdotal evidence should not be sufficient in the eyes of any court or legislative body. The lack of a standard that says we ought not starve incapacitated persons to death is in part the result of a chilling trend that substitutes utilitarian judgments of medical ethicesis for the minimal care and compassion required to simply feed someone and provide them with water. This march toward redefining humanity and classifying the incapacitated as non-persons is a dangerous step that strips the most vulnerable of the founding principles on which this country was founded. We must be careful as a Nation not to travel down the perilous path of nations that have treated those with disabilities including those with severe brain damage as less than whole persons. History has not judged favorably those societies. The utilitarian trend plays into the epidemic of elder abuse and neglect occurring in many long term care facilities around America. What is needed is accurate data and information about gaps in detection, investigation and intervention into the neglect and exploitation of vulnerable and incapacitated adults wherever it may occur. With this committee's assistance, it is my desire to introduce legislation that would address the needs and deficiencies I have cited by one, establishing a clear, substantive standard regarding basic care such as food and water; two, initiate an appropriate study to clearly identify areas of neglect and abuse that our vulnerable and incapacitated adults and children face today; and three, to establish a Federal presumption in our Medicaid and Medicare programs that fluid and food will not be denied absent an explicit wish to the contrary. Mr. Chairman, these past few weeks have shown us that what we may have considered normal, appropriate care for incapacitated individuals, namely the provision of food and fluids, is now being challenged. Congress must step up to this challenge and be prepared to affirm the full protections and rights of every American but most especially those dependent on others. Let it not be said that we ignored so important a value. Thank you for your interest in this subject. I would be very happy to field any questions you or the others may have. [The prepared statement of Hon. Dave Weldon follows:] <GRAPHICS NOT AVAILABLE IN TIFF FORMAT> Mr. Souder. Let me read a statement from the U.S. Conference of Catholic Bishops and if you could react to this as a doctor, I would appreciate it. They said, ``We reject any omission of nutrition and hydration intended to cause a patient's death. We hold for the presumption in favor of providing medical assisted nutrition and hydration to patients who need it which presumption would yield in cases where such procedures have no medically reasonable hope of sustaining life, propose excessive risk or burdens.'' Practically speaking, as a doctor, how is a decision reached that a procedure has ``no medically reasonable hope of sustaining life or pose excessive risk or burdens?'' Should those considerations override Federal presumptions to support nutrition and hydration? Dr. Weldon. That statement from the Catholic Bishops, I have seen and, it is probably one of the most thoughtful statements on this issue that I have read. These issues are very, very tricky and as I said on multiple occasions during the controversy surrounding the Terri Schiavo case, there were instances where I withdrew food and fluids. An example would be dealing with somebody who was very elderly and perhaps somewhat disabled with failing health, multiple medical problems, say they had an underlying heart or lung condition and then developed another complication and would have say a massive stroke. They would be in the hospital and we would get into these issues. It is a very fine line and requires very skilled and experienced judgment when you are crossing over the edge where you are no longer preserving life but you are now prolonging the dying process. In that circumstance, I would sometimes either not initiate food and fluids or if they had already been initiated on occasions I would stop them. Of course this was after full and detailed consultation with family members. In that statement, the Catholic bishops have a presumption that you will give food and fluid but they go on to qualify that which presumption would yield in cases where such procedures have no medically reasonable hope of sustaining life or pose excessive risk or burden and that is the kind of circumstance I was talking about, somebody who was clearly in the process of passing away and what would otherwise be a process that might take 2 or 3 days, it can be viewed as inhumane to drag that out over weeks or months. I don't think the Terri Schiavo case fit that description I am describing to you at all. I think it was a very, very different circumstance. Any change in Federal regulations involving the Medicare and Medicaid programs have to take these kinds of nuances into consideration. If we are going to establish a standard that food and fluids will be a requirement, it has to be caveated in such a way that it allows for professional judgment in situations where you are not prolonging life, you are actually prolonging the dying process. As well, obviously any change in Federal laws or regulations have to take into account any advance directives that the patients may have put forward. Mr. Souder. You have been involved in variations of this issue since you have been in Congress. Have you seen HHS take any intervention, set any guidelines and is your bill trying to address some of that? Dr. Weldon. I have not personally seen any HHS directive, but I believe you have a witness from HHS coming forward. The trend I am concerned about and why I think it is appropriate for us to intervene in this situation is 10 years ago, 15 years ago, you would often have families wanting to withdraw food and fluid in what was perceived as a helpless situation and you would have health care providers who were not comfortable with that decision and wanted to continue to administer food and fluid. Some of those cases ended up in court and I believe the Karen Quinlan case fell into that category. Now what you are actually seeing in the health care delivery system is circumstances where either you have no advance directive or you have stated directives from the patients to have food and fluid and sometimes actually written directives as the report I cited to you stated, family members who are wanting it and health care providers who are saying the quality of life here is insufficient to justify this and they are unilaterally withdrawing food and fluids over the objections of patients and family members and there is no standard in many States in law to basically contravene any of this. Mr. Souder. Mr. Cummings. Mr. Cummings. As I was listening to you, I could not help but think about the many people who called my office with regard to the Schiavo case and many of them very emotional. I have never seen anything like it. These were people who felt that for the most part they should just let her pass away. The interesting thing is a lot of them had been through the experience. I think it is so sad that this has gotten so tangled up in politics. Different people have different perspectives. I was hoping this hearing would put the politics aside, which I think we are trying to do, and try to address what you just said. Listening to what you just said, it kind of makes me understand how it could get so emotional because what you just said to me is a pretty complicated, individual kind of decision. I heard what you said, instead of prolonging life, you are prolonging death. I take it doctors can disagree or agree on that? Is that reasonable to believe? I don't know, I am asking you. Is that the standard and how do you codify that? Do you follow me? Dr. Weldon. Absolutely. Let me share with you, politicians aren't the only people who disagree on issues and doctors frequently caring for patients will disagree on treatments and interventions. What I had seen 10 and 15 years ago was a tendency, and I think some of this grew out of concern for litigation, that a lot of doctors would just throw technology at anybody and everybody and put lots of people who shouldn't have been put on life sustaining modalities, on them and you would frequently have patient family members coming forward and saying, no, we don't want this. The trend now seems to be actually in the opposite direction which is I think beyond the Schiavo case, for the Congress actually looking at this. People against their written directives, people against their family members' desires are having food and fluid withdrawn. Regarding the specifics of the Schiavo case, we need to keep in mind that case, while the media I think went to great lengths to portray it as a Republican-Democrat kind of thing, it totally transcended that when you actually looked at the yeas and nays and when you looked at who signed on the original bill. Some very serious concerns were also expressed about the way that case was handled. This issue is going to continue to be a problem in my opinion and we as a body are going to come under increasing pressure to help contain costs in the Federal health programs and as well insurers are going to come under increased pressure from policyholders, premium payers to contain costs. So when you are talking about something as fundamental as food and water, I think it is very appropriate for the Congress of the United States to explore this issue. I think a standard needs to be established and any standard we establish in the Federal programs have the high likelihood of becoming a standard in private practice as well. Mr. Cummings. When you say costs, you are not talking about the food and the water. Costs go to a person being in a bed in a facility with people looking after them. You said the reverse has now happened where the doctors may take them off the food and water. Dr. Weldon. That is happening today in America. Mr. Cummings. I want to ask you this. Do you think a lot of that has to do with costs? Dr. Weldon. Yes, I do. I think a lot of the physicians in the institutions look at the cost of sustaining people and it takes you down what is called a utilitarian path of medical ethics where we are no longer looking at the sanctity of human life and the need to preserve human life, but we are looking at these broader issues of social good and the cost to the programs. I have not yet concluded drafting my legislation but I am pretty close. I am trying to you might say divide the baby here very accurately. It is a very, very tricky issue. My own personal experience was that most physicians get this right. We were very focused on the case of Terri Schiavo a few weeks ago. However, these kinds of decisions are made on a regular basis in most hospitals and nursing homes and hospice centers in the country and there is usually no controversy surrounding them. There is an increasing trend that I think warrants a Federal standard to be established. Mr. Cummings. Last but not least, as we get older, people living longer, I guess it is reasonable to predict that there will be more of these situations, would you agree? Is that reasonable to assume? Dr. Weldon. Yes, I think it is quite reasonable to assume that. Mr. Cummings. I take it part of what you are saying is that we see this reverse thing going on, the withholding of food and water and we see people getting older, so therefore there is going to be more of this. We see the cost of health care going up and some kind of way in that climate, we had better prepare ourselves to set some kind of reasonable standard. Dr. Weldon. I would describe it as a minimum moral and ethical standard that is biased toward life, in particular the fundamentals of life, food and water. I would not want to venture into the broader issue of when do you intervene with drugs or machines. Those kinds of issues I think are best left to professional associations and institutions but when you are talking about the fundamentals of food and fluid, one of the things unique about the Schiavo case is the judge's order from the bench was you could not bring a glass of water to this woman's lips. While it may seem extreme, it is not unprecedented. There have been similar cases in the past. To me that warrants what is called a substantive standard in Federal law or regulations be established regarding when it is inappropriate to do that and that standard should be biased toward life. Otherwise, we would begin going down a dangerous path of denying food and fluid to a lot of disabled people who have a will to live. Mr. Cummings. Thank you. Mr. Souder. Mr. McHenry. Mr. McHenry. Dr. Weldon, I certainly appreciate your testimony thus far and appreciate your depth of knowledge on this issue. I think you are in a unique position in Congress because of your medical background to address this issue. You said a bias toward life, and this is only in cases where there is a controversy, a legal controversy about the incapacitated individual's life? Is that correct? Dr. Weldon. No. What I am looking at is introducing legislation and I am actually soliciting input from the committee on this issue. A standard for when it is inappropriate to withdraw food and fluids really in any circumstance, not just when you have a family controversy like you had in the Schiavo case. Mr. McHenry. Would this be geared directly toward Medicare or Medicaid patients? Dr. Weldon. I would favor that and the reason I would favor that is we are the principal funder of Medicare and Medicaid and if an institution is going to receive those funds, they should be held to a standard that is biased toward giving essential nutrients and favoring a respect for human life. Mr. McHenry. Is it in essence sort of a standard of case issue with Medicare and Medicaid? Dr. Weldon. I would describe it as an extension of care issues because there are lots of standard of care issues within the Medicare and Medicaid programs that currently exist today. It is these fundamental issues or requirement of food and water have never been established before in law or in regulations. Mr. McHenry. So in essence, it would be just as though Medicare and Medicaid have a certain standard of care that they demand? Dr. Weldon. In order to be eligible to receive reimbursement through the Medicare and Medicaid program, if you are going to be taking care of these patients I think you should be held to a minimum standard of delivering food and water to people except it needs to be qualified in such a way that you are not forced to give food and fluids to people who are obviously in the dying process or people as well who have an advanced directive indicating they would not want to receive food and fluid. Mr. McHenry. So in the absence of a medical directive and with the basic standard of care, so it would be an extension of current Medicare and Medicaid policy and just putting in a certain level of care that every doctor must provide for their patients? Dr. Weldon. Correct. Mr. McHenry. Thank you and thank you, Mr. Chairman, for having this hearing. Mr. Souder. Ms. Brown-Waite. Ms. Brown-Waite. Thank you and thank you, Doctor, for being here. You and I have had many conversations about this very difficult issue. I would like you to clarify a couple of comments you made. One was you find it disturbing that an increasing number of doctors in hospitals unilaterally are withdrawing food and water. Could you quantify that? Is it in the tens or is it 20, is it hundreds, thousands? Dr. Weldon. The National Right to Life Committee provided me a report and I would be very happy to make a copy of that report available to you as well as to the record. It is entitled, ``Will Your Advance Directives Be Followed?'' The report is full of cases where family members report advance directives in favor of administration of food and fluid were properly executed and family wishes were present that food and fluid would be continued and health care providers and institutions shut off the food and water allowing the person to die based on sometimes a medical ethics committee at the institution making the decision, sometimes it is the individual providers. The concern I have in this is there is no standard in 80 percent of the States, in 40 States. There is no legal remedy that the family members can go to in order to prevent that from happening once the institution makes that decision. In terms of the absolute number, I can provide the report. Ms. Brown-Waite. That would be very helpful. In today's world where we have such a litigious society, doctors tell me they wouldn't do this because of fear they would be sued for either wrongful death, even though it is a premature death, or medical malpractice. I hear from doctors back in the communities that if anything, they actually are erring on the other side, putting feeding tubes in and keeping them in for the fear of litigation. Dr. Weldon. Yes, there is some of that. Indeed, I had a very interesting conversation with a tort attorney who actually makes his living suing nursing homes. One of the things he most often sues for is failure to provide adequate food and fluids that leads to medical complications. In that same milieu, there is the other side of the story and it typically involves people with disabilities and most often it is people with severe disabilities and institutions are making decisions to withdraw food and fluid and it is typically based on a quality of life analysis. To my knowledge, none of those cases have been successfully litigated through the court system. Ms. Brown-Waite. The last question for you is, if we set a standard for Medicare and Medicaid and private insurance companies don't follow it, do we have a system of unequal rights? In other words, the Medicare or Medicaid patient, we would err on the side of food and water and the private pay or one of the individual insurance companies, they would never adopt this standard. Help me to understand why we would have two standards? Dr. Weldon. The remedy for that would be a universal Federal standard that not the Federal programs would have to adhere to but as well private insurance companies would have to adhere to it. One of the issues you would get into there if you try to move such a legislative act through the Congress is that you are usurping State authority, State law, State regulatory processes and people who hold to a very strong Federalist opinion may not want to go down that path. My experience is the majority of these cases are within the Federal programs but your point is actually well taken and if you are alluding to the fact you would like to see it broadened, then I would be very interested in your input on that issue. Ms. Brown-Waite. You sparked another question for me and that is would you have government intervention in a case similar to Terri Schiavo's where allegedly she expressed her views to people but it was never written down, so is your goal to override a family member carrying out the person who is in the hospital or in the nursing home or hospice, override their decision even if it wasn't in writing? Dr. Weldon. What you are really getting at is if we had the standard in place during the Schiavo incident, how would that have played into the deliberations in that case? Ms. Brown-Waite. Correct, because she was on Medicaid. Dr. Weldon. Yes. I am not really sure and I would have to defer to legal scholars on that. I have not even finished the process of drafting my legislation. As you know, I am a physician, not a lawyer. It is not my intent to replay the Schiavo case in current law. What has been drawn to my attention mainly by some of the people sitting behind me who represent some of these disability groups is a strong level of concern about a trend in health care delivery which I think is being driven a lot by cost issues Mr. Cummings brought up and that you are going to see more and more people who are less and less disabled being denied care if we do not at least establish some sort of floor or basement or fundamental standard. Ms. Brown-Waite. But again you would have two sets of health care, those on Medicare and Medicaid and those not covered by Medicare and Medicaid. I know you are working on a very thoughtful bill. Dr. Weldon. I am not exactly sure what your concern would be because my experience is the Federal standards are usually adopted by private industry. Ms. Brown-Waite. That may have been the case but with increasing health care costs, I am not sure unless it was mandated that insurance companies would follow through on that. I look forward to seeing your bill. Dr. Weldon. If it was a standard in Medicare-Medicaid, it would probably involve funding and it would be targeted basically to facilities. Mr. Souder. Our challenge in Congress is which rights are basic and fundamental and transcend. Is this a right to life, a right to certain types of services? Clearly in Medicaid and Medicare we make decisions and they are interpreted through the Department of Health and Human Services that are very difficult decisions. This limb constitutes this much, this limb constitutes this much and private pay can cover different things. There are different standards. The question is does the right to water and food transcend public-private, is that a basic right or is that a right tied directly to our funding? We certainly are feeling the cost pressures here. Everybody is raising health care cost questions. Businesses are raising it, doctors are raising it, hospitals are raising it, how many hearts are you entitled to, how many of this and that, how do we sort through this very difficult cost, quality of life question? What we are saying and I think you brought up really well and hopefully we can work through this hearing is we have to be very careful about having quality of life be the sole determinant here. Are we in effect making one whole class of citizens second class citizens. Hopefully as you develop this and I know we had talked about this before the Terri Schiavo case and will continue to talk about it afterwards, but this certainly put a different heightened awareness in the case. Thank you for coming today and testifying. We will move to our next panel. Dr. Don Young, Deputy Assistant Secretary for Planning and Evaluation, Department of Health and Human Services whose job it is to provide as much and total health care for everybody at basically no cost and make sure everybody gets absolute service. We do need to swear you in. [Witness sworn.] Mr. Souder. Let the record show the witness responded in the affirmative. Thank you for taking time today to come and address. We look forward to your testimony. STATEMENT OF DR. DONALD A. YOUNG, DEPUTY ASSISTANT SECRETARY, PLANNING AND EVALUATION, DEPARTMENT OF HEALTH AND HUMAN SERVICES Dr. Young. Thank you for inviting me today to discuss the role of Medicare, Medicaid and advanced directives for those who cannot care for themselves. We are committed to ensuring that Medicare and Medicaid beneficiaries receive appropriate care tailored to their own needs and that they understand their rights and options in all care settings. As the subcommittee undertakes an examination of policies regarding the status and legal rights of incapacitated individuals, I appreciate the opportunity to provide an overview of the role of the Medicare and Medicaid programs as well as other programs within the jurisdiction of the U.S. Department of Health and Human Services. Medicare and Medicaid both play an important role in financing care for patients who may need to make choices about the types of health care they want. Medicare and Medicaid serve to protect the health of individuals at every stage of their lives, including when they cannot speak for themselves. However, decisions about health care itself are not made by Medicare and Medicaid. Such decisions are made by individuals and their families in consultation with their physicians. The Federal Medicare and Federal State Medicaid programs provide coverage for hospital, skilled nursing facility and home health service and hospice care as well as nursing facility services for long term care for Medicare beneficiaries. Hospice covers a broad range of medical, personal assistance and social services with the goal of keeping the patient comfortable and pain free and supporting the family. Hospice was added as a benefit under the Medicare Program in 1983 and as an optional benefit under Medicaid in 1985. The number of beneficiaries electing hospice care and the number of agencies offering such services has grown steadily ever since. The Centers for Medicare and Medicaid Services developed conditions of participation that health care organizations must meet to participate in the Medicare and Medicaid programs. These standards are used to improve quality and to protect the health and safety of beneficiaries. Conditions of participation vary by facility type and include requirements related to patient rights, medical staff, skilled nursing and rehabilitation services, food, dietetic services and needs. An important condition of participation is the requirement regarding advance directives. The Patient Self Determination Act of 1990 requires that all adult patients in all covered settings be informed of the right to accept or refuse treatment through an advance directive. An advance directive is a written instruction such as a living will or durable power of attorney for health care. It is recognized under State law relating to the provision of health care when the individual is incapacitated. This also includes do not resuscitate orders. Compliance with this requirement is a condition of participation under the Medicare Program for hospitals, hospices, skilled nursing facilities, home health agencies and Medicare advantage plans. Medicaid managed care organizations also must comply with identical requirements. Advance directives address both treatments individuals do and do not want. For example, an individual may prefer that health care providers perform all possible life prolonging treatments. Conversely, a person may elect to receive non- curative care. Therefore, if an individual has specific treatment preferences, they would be able to document them in an advance directive. The Social Security Act which codifies the Patient Self Determination Act of 1990 mandates that all institutions receiving Medicare and Medicare funding inform all patients regardless of whether they are entitled to Medicare and Medicaid of the right to accept or refuse medical treatment through an advance directive. All health care institutions must maintain written policies and procedures concerning advance directives with respect to all adult individuals receiving medical care. We are required to provide written information to such individuals. In addition, providers must document in the individual's medical record whether or not the individual has executed an advance directive and may not discriminate in the provision of care to an individual based on the existence of an advance directive. Providers must also comply with State laws regarding advance directives and provide for education of the staff and communities on issues concerning advance directives. In addition to Medicare and Medicaid, other government programs and services are available to families addressing health care issues for vulnerable individuals including Federal, State and local government partnerships that include ombudsmen protection and advocacy groups, adult and child protective services. These include the Health Resources and Services Administration programs that provide services and benefits for persons with traumatic brain injury. The Administration on Aging has a strong commitment to protecting the rights of seniors and helping them to make end of life care decisions. Nearly 1,000 AOA funded legal providers help seniors to obtain medical and financial powers of attorney, living wills and advance directives. The AOA also administers an ombudsmen program under which local ombudsmen work on behalf of residents in hundreds of communities throughout the country. AOA also supports the National Family Care Giver Support Program. In conclusion, we are committed to ensuring that vulnerable beneficiaries receive appropriate care through Medicare and Medicaid that is tailored to their needs and that they understand their rights and options. As you can see, a variety of protections are in place in Medicare, Medicaid and beyond these programs to ensure that beneficiaries receive appropriate health care. I thank you for holding this hearing and I am happy to answer your questions. [The prepared statement of Dr. Young follows:] <GRAPHICS NOT AVAILABLE IN TIFF FORMAT> Mr. Souder. Let me see if I understand this correctly. The medical decision whether to spend the money, the Medicare- Medicaid money, is made at the doctor or hospital level and you don't monitor this unless someone makes a complaint? Dr. Young. No. Let me make a very important clarification here. I was speaking of the conditions of participation. The Medicare Program sets those conditions of participation and surveys facilities to be sure they are adhering to those conditions of participation. One of the requirements within those conditions of participation is the requirement they offer an advance directive. The Medicare and Medicaid programs set similar policies related to reimbursement to which your question was directed. Once conditions have been set for reimbursement, once decisions have been made on what is a covered service and what is not a covered service, if the physician is furnishing it in a way that meets professional standards, we don't get into the examining room between the physician and the patient. Mr. Souder. What did you think of Dr. Weldon's statement which he said came from a right to life report that many hospitals, up to 80 percent, have often violated the express will of the patient and is there monitoring of this? Dr. Young. I was first of all surprised by that. I had not seen that report. I intend to obtain that report and look at it very soon. Amongst the kinds of questions I had were if indeed there were 80 percent, was it 1 patient out of 1,000. That is, did something happen that could have been inadvertent or willful? We have some information related to nursing homes. We do not have a lot of good information on this. A substantial proportion of nursing homes are following the rules but not all of them and there are times we have to go in and cite and encourage them to adhere to the rules they say they are adhering to. Mr. Souder. Do you know of any cases where you have intervened in a feeding type situation? Dr. Young. The Department or the Medicare Program? Mr. Souder. Yes, where there was somebody who had a statement, the hospital didn't want to provide it and the Department of HHS has intervened and said look you are supposed to provide that either by fining them or rebuking them? Do you have a penalty if they don't? Dr. Young. First of all, I am not aware of that having occurred. In terms of our conditions of participation and our overall requirements, we do have surveys and we do check. There are penalties that are on institutions for violations of those. They can be civil money penalties, monetary but for very egregious violations of conditions of participation, providers can lose their ability to participate in Medicare and Medicaid which essentially effects their providing services to everybody. Mr. Souder. Are almost all of those cases brought to your attention by the system you set up for elder abuse reporting or disability reporting, national family care giver support programs or are these being found and discovered by HHS investigators? Dr. Young. They are being found by either the staff responsible for drafting and enforcing the standards and frequently that is done at the regional office level not centrally. Mr. Souder. You had in your full written statement that according to the Patient Self-Determination Act of 1990, it mandated that most institutions receiving Medicare and Medicaid funding inform all adult patients. What would be the exception category, do you know? Dr. Young. All of what we call providers and provider facilities are covered by that--hospices, nurses, skilled nursing facility, long-term care hospitals, acute care hospitals. All those things that we would call an institutional provider plus a hospice, which may be without walls, are covered by that. Mr. Souder. I would be interested in your personal reaction, since you are a physician as well, to what I asked Congressman Weldon about the U.S. Conference of Bishops. I know you were here and heard the question about this difficult question that, practically speaking, how is a decision reached that a procedure has no medically reasonable hope of sustaining life or poses excessive risks or burdens, and should this consideration override Federal presumption in support of nutrition and hydration? Dr. Young. There are some very, very difficult judgments embedded in that. When a patient looks like they are end of life, you can look at their brain functioning, you can do a whole host of studies and tests to see is there any probability of recovery here. If they have advanced diseases such as cancer, you know approximately what their life frame is. Having all that information, that still boils down to an extremely difficult decision to be made. And if you are talking about some of the things we were talking about here today, the physician needs to involve the family and know the family's wishes and the patient's wishes. If you do not have an advanced directive, and it would be nice if you always had one, then you have to have some understanding what you and the family believe the patient would have wanted and what they would have wanted. And your concern, ultimately, is still the welfare of the patient. So, as Dr. Weldon said, there is a time when there is severe suffering and that has to be a factor you and the family consider in making your determination. Mr. Souder. Thank you. Mr. Cummings. Mr. Cummings. If the problems that Dr. Weldon talked about that he read in the Right to Life document that he just referred to a moment ago, if that were something that were happening--and I am not saying it is not, I do not know--who would know that? It seems like that is the kind of information that would come to some office in HHS. Is that reasonable to guess? Dr. Young. Let us assume that there have been violations and there are more than random violations, which you may not find, the patient, the patient's family can report it, they can report it to one of the various hotlnes, they can report it to the IG, they can report it to HHS directly. Providers in that hospital could discover it and report it via one of those mechanisms. Routine audits of medical records could determine it and it could be reported through the hospital's own quality oversight and medical audit review, professional standards review organizations. There are numerous places within the health care system where there is oversight that hopefully would identify and report up that kind of problem. The question I have that you are going to have to ask the legal authority, Justice Department, is, if, indeed, these determinations have been made by the patient, how can they be overturned by the hospital? And I do not have enough detail to understand that report from Dr. Weldon. But I think embedded in that is a very important legal question that needs to be answered as well, if, indeed, that is happening more than on rare occasions. Mr. Cummings. So I would take it, based upon what you just said, that you were a bit surprised by that comment of Congressman Weldon that this was something that apparently has happened quite a bit. Were you surprised? Dr. Young. Yes, sir, I was surprised. I am not aware of that report. Mr. Cummings. OK. You prepared a statement to come here today, did you not, and it is a very good statement. I was just wondering, I know it may have caught you by surprise what he said, but in your discussions with the people in your office, I am sure you had discussions generally, did you hear about anything like this? Dr. Young. No. Mr. Cummings. One of the things that Dr. Weldon said that I think just deserves a lot of consideration is he talked about whether you are prolonging life or prolonging the death process. And you have said it to a degree, that this is a judgment, this is a pretty significant judgment call. I am just wondering, the chairman asked you about monitoring and how is it monitored, I would guess that even if you were doing some monitoring, there might at this point be some question as to-- let us say you have somebody who says, look, that doctor withheld water and food and it was a directive of my loved one to have everything possible to sustain my life, food and water to save my life. Is there not a question then, is this sustaining the life, or is this sustaining the death? Dr. Young. You put your finger on an extraordinarily not only complex, but very, very difficult judgment. The body is a very, very resilient thing and predicting how different people will react under differing circumstances, even those who are very, very sick, is very difficult and fraught with error. Mr. Cummings. When I practiced law, we often had to have guardianships over people because they could not do for themselves, and quite often dementia set in. When you are trying to figure out what is in the best interests of this person, it does become a bit complicated. One of the standards has been that you want to do everything you can do to protect the person, almost like you would protect a baby, because they cannot protect themselves. So, in this instance, it seems as if one of the things that we are trying to do, and I think--I think--part of the reason for this hearing is to protect those who are most vulnerable and those who find themselves in a situation because of illness or what have you where they cannot--well, it depends, if they made a decision, trying to carry out that decision, if they have not made the decision, trying to figure out what you do from there. Do you think there is enough in the law right now to protect people, you following me, with what you are familiar with? Dr. Young. Yes. Yes, I do follow you. I understand the question. I think the most important protections that are there are through the Medicare conditions of participation that apply to everybody, and that is the requirements related to an advanced directive. The deficiency that we have, and I think it applies to all of us, is we probably need to do a better job educating the public to fill out those papers and to do their advanced directives, because we still have a substantial number of people who have not. If we had those advanced directives for everybody, if the loved ones, the family, the physicians knew the wishes, then the kinds of decisions and discussions that we are talking about today would be very rare and might not be there at all. Mr. Cummings. I was just reading and listening to what you had to say about the ombudsman. They play a pretty significant role. How prevalent are they, doctor, the ombudsmen? It seems like a really wonderful position. I see some of them are voluntary, so I do not know how widespread they are. Are they controlled, by the way, do we have anything under HHS that sets any criteria for ombudsmen, what they are supposed to do, what they are supposed to be looking for? Or is it just something where people kind come into hospitals or hospices and say, look, I am volunteering, I want to just kind of watch over things. Because I am wondering, if it is not something that is pretty concrete, maybe that is something that we might want to look into. Dr. Young. They are voluntary. But the program itself is one that I do not have the details on, I would be happy to get you more information and submit it for the record. Mr. Cummings. But from what you have written here, I am almost finished, Mr. Chairman, they do and can play a significant role. As a matter of fact, it sounds like they could possibly play the role of a whistle-blower at times. Is that reasonable to conclude? Dr. Young. Well, yes. And there is not one single ombudsman or ombudsman program. There are people out there who are very interested in Medicare beneficiaries, there are centers who are funded to look at, to help, and to provide advice and guidance to Medicare's beneficiaries with problems, help intercede on their behalf. But I will get you more information. Mr. Cummings. Last, but not least, what would you like to see us do, if anything? Can you think of anything? You know the subject matter here, what we are looking at. Do you see loopholes? We are trying to figure out how we can help in this process to clarify or to draw the line. Do you have any recommendations about any of this? Dr. Young. Yes. I have listened carefully to the proceedings so far, to Dr. Weldon. I do not have any suggestions and recommendations. A lot of this is very much personal that belongs with the family, with the doctor, with the patient's wishes. If you identify something that you think would be the appropriate subject of Federal legislation, we would be happy to look at it, give you our opinion and our advice. Mr. Cummings. OK. Thank you. Mr. Souder. One thing that would help as a start, our staff tried to get data under Medicare and Medicaid as to any numbers that you might have on people in minimally conscious state or persistent vegetative state that are funded under Medicare or Medicaid. We do not have any idea of the universe of people we are dealing with. Is this a little problem? A big problem? Does such data exist? Dr. Young. We have some limited data. On the Medicaid program side, there was a study done, it is probably 4 years, 5 years old now, but under that study, it was estimated there were about 2,500 people accountable for about $600 million in spending for inpatient care with a diagnosis of persistent vegetative state. So that gives you some notion. It is not an inconsequential number of people or an inconsequential number of dollars, and that is only for the inpatient hospital setting. Were that done in nursing homes, you would certainly find additional increase. Mr. Souder. So you do not have reporting data that would isolate that? That was a study done, a sampling? Dr. Young. Yes. All of this would have to be done either as a study using claims data, or as a research project that was designed specifically to get at the questions that are being asked. Mr. Souder. Because one of the things, in addition to this group of individuals, really, what is underneath the concern here is, as we grapple with incredibly intense cost pressures, from our funding level that is going to HHS, to the State level, flat funding Medicaid all over the country as we block grant more to them, that the goal of hospitals and nursing homes is to cap the number of Medicare and Medicaid patients that they have and try to blend it as much with at least private payer, blend it and this cost pressure. What we have as a fundamental concern here is that those who are least able to speak for themselves and those with disabilities are going to get shunted aside or at least have less of a voice. There needs to be a fair public debate about how we are going to resolve this difficult question. Because they probably take a lot of dollars per patient, for a long period of time, have, depending on the nature of their disability, more specialists involved, and, therefore, become vulnerable, especially if their spouses or children may not live in the area, may not be alive. So how do we as a society make these kinds of decisions? And if we do not have some basic data in addition to casual sampling, the pressure--let us say if there is a hospital that is already cost-squeezed and there are 10 patients at that hospital as opposed to none at a private pay hospital, how do we sort through, and what is our responsibility as a Nation to protect individuals' fundamental rights, like we did under ADA or other types of legislation? Dr. Young. I very much agree with you, Mr. Chairman, on the problem with costs. We, as a Nation, are struggling with that. I think we will continue to struggle with it. But we need to do something about that because of the downside in terms of numbers of people who are uninsured and other issues. In terms of health care spending, we have always spent the most on the sickest. Twenty-seven percent of Medicare's expenditures are for people in the last year of life. Now having said that, let me add very quickly a large of amount of expenditures are also for people who live longer than that year. And it is a very slippery slope if you start to raise this issue. This spending does not occur once, and people frequently do not get into a condition where they are on life support tubes as a single event. It can happen, you are very healthy, you go into the hospital, you need to have breathing assistance after surgery, then something else happens and you need to have food and water, then something else happens and you need to have kidney dialysis. This occurs over time. It is not a one-time kind of thing and that spending occurs over time. So we put, as a Nation, and in the Medicare program, a large amount of our resources on the very sickest people, and that is appropriate. Mr. Souder. I want to reiterate again, unless we have data, it is tough to monitor. I know you have all kinds of pressure to get all kinds of data, too, and we have reams of it stacked that nobody ever looks at. It is one of the favorite things of Congress to do is ask for data and then have nobody look at it, or find it so inaccessible that you cannot find what you are looking for. Nevertheless, this type of question, in addition to the occasional study, if we are going to make sure, otherwise, we are, in fact, dependent on the ombudsman and the occasional kind of whistle-blower calling this, because we cannot really do oversight, we cannot really do planning in the agency or in Congress if we do not know how many we are dealing with, what percentage of cost that is other than in a random study, which may, in fact, be enough if the studies are accurate and repetitive enough. Dr. Young. I understand your point, Mr. Chairman, and I will certainly carry it back to the Department to the various components that are involved in doing research and analysis. Mr. Souder. Otherwise, we could pass legislation that is so sweeping but not be relevant. Dr. Young. I agree with you. I do policy primarily for a living, and data research and analysis is the core tool for our work. Mr. Souder. Ms. Watson, did you have any questions of this witness? Ms. Watson. No. I will pass. Mr. Cummings. I have one other. Mr. Souder. Mr. Cummings. Mr. Cummings. Just one question. I just missed that 20-some percent you said. What was that, last year? Dr. Young. Yes, 27 percent of Medicare's expenditures were for people during the last year of their life. Mr. Cummings. Twenty-seven percent? Dr. Young. Yes. But a very large number are for people who do not die that year but continue to live. It is very risky to look at this and say, gee, 27 percent go to people who die, because you also know that 27 percent go to people who do not die. You have to look at both pieces of that spending. There are very sick people who live, and there are very sick people who die in a given year. Mr. Cummings. As we look, going back to something I asked Congressman Weldon, as we look at the fact that we are living longer, at HHS, are you all paying attention to that? It seems like it would be almost impossible for you not to be. Because based upon what you just said, people are living longer and we are spending 27 percent of our Medicare dollars in the last year of life, and you have more people you are doing that for. And I understand all you said about some live and some do not. So what are you all doing? Dr. Young. Much of that work is being done through the National Institutes on Aging. They have done a great deal of work; they have ongoing studies. Amongst the findings, for example, are as the population has gotten older, the age at which people become disabled or limited has also moved out dramatically. So the 65 year old person today continues to work and contribute to society. Twenty years ago, the probability of that was less. There are people now 75 and 80 who are very, very healthy. So old age by itself, however you want to define that, is frequently associated with very robust life. Mr. Cummings. I have to tell you, old age is a moving target. The older you get, the more it moves. [Laughter.] Dr. Young. We want to keep it moving out. Mr. Cummings. Thank you. Mr. Souder. Thank you very much for your testimony. We may have some followup. I wanted to clarify for the record, the Right to Life report said that 80 percent of the States do not have laws effectively protecting against hospital denial of food and fluids. That is different than saying 80 percent had not done that. That is a substantially different statistic. Dr. Young. Yes, sir. Thank you, sir. Mr. Souder. Thank you for testifying today. If our third panel could come forth; Diane Coleman, Bob Sedlmeyer, Kate Adamson, and Robert Destro. I will administer the oath. [Witnesses sworn.] Mr. Souder. Let the record show that each of the witnesses responded in the affirmative. We are going to start with Diane Coleman, who is president of Not Dead Yet. Thank you for coming today, and we appreciate your testimony. STATEMENTS OF DIANE COLEMAN, PRESIDENT, NOT DEAD YET; BOB SEDLMEYER, FORT WAYNE, IN; KATE ADAMSON, REDONDO BEACH, CA; AND ROBERT DESTRO, PROFESSOR, COLUMBUS SCHOOL OF LAW, THE CATHOLIC UNIVERSITY OF AMERICA STATEMENT OF DIANE COLEMAN Ms. Coleman. Thank you. Thanks for the opportunity to talk with you today. I have a J.D. and an MBA from UCLA, and I am on the adjunct faculty at the University of Illinois at Chicago, co-teaching a graduate course series in disability and medical ethics. I am also the executive director of Progress Center for Independent Living in Forest Park, IL, which is a nonprofit service and advocacy center operated by and for people with disabilities. I have a neuromuscular disability and I have used a motorized wheelchair since I was 11. The first thing I would like to do, because of the topic of this hearing, is to acknowledge Congressman Danny Davis, who is also a member of this committee, for his leadership in cosponsoring MiCASSA, the Medicaid Community Attendant Services and Supports Act, which would give people with disabilities, old and young, the choice to receive long term care services in their own homes rather than being forced into more expensive and dehumanizing nursing homes and other institutions against their will. For an indepth discussion of that, I refer you to the testimony of Bob Kafka which was submitted in writing for this hearing. I am sure it is over on the table there. I hope that you and many of your colleagues will become cosponsors of this important legislation. When I was 6 years old, my doctor told my parents that I would die by the age of 12. I am 52, so, so much for predictions. But 3 years ago, I started using a breathing machine at night. I had two friends about a decade ago, one was in her 30's and one was in her 50's, who needed the same thing. But their doctors, who were in Nashville at major hospitals, discouraged them from it without really saying what would happen as a result. At an early age, they each went into respiratory distress, and died each within a month of that from infections. I have had many friends say they were pressured to sign do not resuscitate orders, and some who said the doctor told they are under one whether they like it or not, hospital policy. Frankly, I am a bit worried about what might happen to me if I get into some kind of a medical crisis and wind up in a hospital. I have a health care proxy, but I am worried that his decisions that I have entrusted to him might not be followed. I am not at all convinced that decisions to live are still treated with the same respect as decisions to die. By the time the Schiavo case reached major national attention, 26 national disability organizations had said that Terri Schiavo should receive food and water, that her rights had not been protected, she had not selected her own guardian, the evidence was so conflicted it did not meet Constitutional standards. So I have attached to my written testimony a 3-page statement that was issued by 23 of those organizations in October 2003, and also a more recent article co-authored by Steve Eidelman, who is the head of the Arc of the United States, formerly known as the Association for Retarded Citizens, and Steven Drake, who is research analyst for Not Dead Yet. We have wondered by pro-life and religious groups have received so much attention while so many prominent disability organizations have been ignored. It appears that disability rights advocates do not fit a script that the media and many others have seemed determined to follow. For the last three decades, certain bioethicists have told you that euthanasia is about compassionate progressives versus the religious right. Never mind that these bioethicists are actually talking about the legal parameters for statutory guardians and health care providers to medically end the lives of people with disabilities on a discriminatory, non-voluntary or outright involuntary basis. Concerned disability groups do not fit the script and so we have been ignored. The bioethicists who have shaped this debate apparently think of themselves as progressives, but they never seem to discuss cutting unnecessary health care marketing costs or profits before cutting lives. People with disabilities would like to educate them about the difference between a dying person and a person with a disability who is nowhere near death but depends on medical treatment to live. We have a lot of information and arguments and we have tried to put them forth--in fact, we filed three amicus briefs in the Schiavo case--but, again, we are ignored. Many of these bioethicists have actually had hundreds of millions of dollars to work with over the last 15 years from major foundations, and they have used it to build a steamroller that is decimating the civil and Constitutional rights of people in guardianship. They have been making rules about who lives and who dies, changing State laws state-by-state, influencing attorneys general state- by-state, and Hollywood screenwriters, all of this pretty much behind closed doors and under the public radar screen. We agree that many things are private family matters, like parental discipline of children, for example, until they go too far. Is there a Federal role? I think the disability community feels that there is. It is a civil rights issue. It is one of those States rights can be States wrongs kinds of things. But we do agree that there are a lot of complexities, a lot of people affected by this, a lot of experiences that people have had that influence how they feel about it. And we feel that we need to be very deliberate and proceed carefully, not in a rush, but rather to come together and figure out how best to honor and respect all individuals. So, in a way, we feel like we need a time out. The ideas of collecting information are really useful. It is kind of shocking that the Cruzan opinion came out in 1990 and somehow, with all those hundreds of studies of advanced directives and hundreds more of so many other things relating to so-called end of life care, some end of life care is good, but others is more about ending lives, and we are trying to figure out the difference here, but with all those studies, we do not know who is dying by withholding of treatment, who made the decision, what treatments were withheld, under what circumstances. We do not even know that for people in Medicare and Medicaid. And we could not even go back and do a retrospective study of medical records because the cause of death is written as whatever the underlying condition is and not the withholding of treatment. So it is going to have to be a very deliberate process that figures this thing out. Regardless of our abilities or disabilities, none of us should feel that we have to die to have dignity or be relieved of pain, or that we should have to die to stop burdening our families or society. We would like all of this committee to reject the script, the right-left script. Listen to the disability rights movement. On that issue of the coming wave of aging baby-boomers, we are your advanced guard. We have been doing this for decades, working out what are the ways to best deal with empowering individuals and families and supporting individuals and families to live to their highest potential, and in a way that is as cost-effective and consumer-directed as possible. That is what we are about. We would like to help everybody figure out how to do that in time that a decade or two from now we will be glad who we turned out to be. [The prepared statement of Ms. Coleman follows:] <GRAPHICS NOT AVAILABLE IN TIFF FORMAT> Mr. Souder. Thank you very much for your testimony. All of the witnesses' full statements will be included in the record. Our next witness, Bob Sedlmeyer is from my hometown of Fort Wayne, IN. He and his wife Cheryl, and I know he will tell us some of the story, but I want to say to those, in addition to those in the room, to those who are watching on television, Members or staff, the media, we can argue about what our Government policy should be, but Bob and Cheryl have practiced what parents who have loved their kids and have watched their lives be impacted for I think 19 years now, somewhere in that amount, of where they can go on vacation, what they can do, how much money they are going to have, they are not a rich family, they are a hardworking family, and yet they made keeping and feeding their daughter a center of their lives and really appreciate that example of love, regardless of what government does. And so we are looking forward to hearing your testimony. STATEMENT OF BOB SEDLMEYER Mr. Sedlmeyer. Thank you for that affirmation, Chairman Souder. Good afternoon. I play many roles in life. I am a teacher, consultant, youth minister, son, and husband. I speak to you today, however, as a father, the father of Pam, Rob, Valerie, Vanessa, and Tim. Let me begin by telling you about my daughter, Valerie. Valerie is 19 years old. Her name comes from the Latin word for ``strength,'' but if she were by my side today you would think that she is one of the weakest persons you have ever seen. Valerie suffers from a congenital defect of her circulatory system called an AV malformation. It is a condition that results in a knot of blood vessels instead of an orderly array of arteries and veins. Her knot was formed deep inside her brain. From the moment she was born her brain was starved for oxygen. A series of experimental surgeries saved her life but could not prevent the extensive and permanent damage to her brain. Valerie is not unlike Terri Schiavo. Spinal fluid fills the areas where her brain has withered and died. Some would say that she is in a persistent vegetative state. She cannot speak. What she sees and hears is a mystery. Her fingers curl tightly into her palms. She has metal rods in her back and right leg to support her fragile bones. She must be carried or carted everywhere. She has been fed through a tube three times a day for the past 17 years. She is given medication to control her seizures and to relax her ever-tense muscles. Her care has cost many thousands of dollars, a financial burden that has been carried in large part by insurance, Medicaid, and the generosity of those physicians who have attended her. Valerie's prognosis is not hopeful. She will never gain more awareness of herself nor the world around her. When she was 2 months old and well enough to be released from the hospital, her mother and I were invited to an exit conference with the attending neurologist. He was blunt, and his words will forever be etched into my memory. ``Everything from the ears up is gone,'' he said. ``I recommend that you place her into an institution.'' We took her home instead. Caring for Valerie has never been easy, but it has become routine. A typical day for her begins at 5:30 a.m. Her mother wakes her up, dresses her, feeds her, and places her into a wheelchair. A bus picks her up and takes her to the local high school where she joins five other students in the special needs classroom. She is given occupational and physical therapy and is taken on occasional field trips. She receives abundant attention from teachers, aides, and her fellow classmates. One boy even calls Valerie his girlfriend. When she comes home, we place her on a cot in the family room. Sometimes, when the weather is nice, we take her for a walk or just let her sit in the warm sunshine. About 8 p.m., after she is fed and diapered, we carry her to bed. Besides the excellent educational services Valerie receives, we are also grateful for other services for which she qualifies through the Medicaid waiver program. A therapist visits her once a week in our home, and a caseworker tracks her well-being quarterly. She also receives several hours a month of respite care. This has given us welcome breaks from the intense physical and emotional stress of caring for her, and afforded our family opportunities to take much-needed vacations. This program also pays for her food and diapers. And since she turned 18, Valerie receives SSI. These funds supplement our household income to provide for her clothing, transportation, medical, and assistive device needs. Valerie will ever remain in need of total care. She will never hold a job. She will never vote in an election. She will never exercise her freedoms of speech, assembly, or religion. She will never make a positive contribution to society. Of what value, then, is her life? For what purpose, then, should her life be sustained? I am not a philosopher, I am not a theologian, I am not a physician or a judge. I claim no special knowledge. I am a father. And I am a man of simple faith. I have had to wrestle with these questions for many years. I know that my answers will find little favor with current polls and pundits. I believe the merits of Valerie's life cannot be determined by how she can think or what she can do. I believe her worth cannot be evaluated by how much she is wanted either by me or anyone else. I believe that her value cannot be judged by the ones who may see her as less than fully human, but only by the One who sees her as made in His image and likeness. And it is only through the eyes of faith that I have come to see her in that way, too. I have come to realize that her life, as wounded and powerless as it is, is not a burden to bear but a gift to cherish. It is not something over which to exert control but to assume stewardship. I began to see that her long-suffering has a purpose. She has taught me how to love unconditionally, how to give sacrificially, and how to serve humbly. She has made me a better husband and father. I will forever be grateful to the many doctors, nurses, social workers, therapists, teachers, clergy, family, and friends who have also seen the value of her life. Many have concurred with the sentiment that they would not want to live like that. Many have asserted that Terri Schiavo had a right to die. It is frightening to me that the value of Ms. Schiavo's life, as measured by the scales of our justice system, did not merit even food and water. I fervently hope that such scales will never be used to assess the value of my daughter's life, and dreadfully anticipate the day when her right to die may become her duty to die. So I appeal to this subcommittee to promote policies and pass legislation that both protects the lives of incapacitated citizens like my daughter and encourages and enables their families to provide for their needs. Thank you again for the opportunity to testify on these matters, and may you be guided by wisdom and compassion as you consider your recommendations. [The prepared statement of Mr. Sedlmeyer follows:] <GRAPHICS NOT AVAILABLE IN TIFF FORMAT> Mr. Souder. Thank you. Our next witness is Kate Adamson, from Redondo Beach, CA. STATEMENT OF KATE ADAMSON Ms. Adamson. My name is Kate Adamson. The left side of my body is partially paralyzed. I was once completely and totally paralyzed; I could not move at all, I could not even blink my eyes. Yet, I was completely conscious and aware and I was able to feel pain. I just could not tell anyone about it. I know what it is like to be hooked up to respirators, to be fed by a feeding tube, I know what it is like to have your feeding tube turned off for 8 days. Today, you will hear my opinion and hear about my personal experience and unique perspective on the question before this committee. One night I was fit and healthy, a 33 year-old mother of two small toddlers with everything to live for, and the next morning I was totally paralyzed. According to the doctors, I had less than one chance in a million to survive. Ten years ago, before this happened to me, I thought I was pretty clear about what I would want if I ever suffered a catastrophic injury or illness. I was sure that I would rather die than be a burden to anyone. I wanted no heroic measures taken when my time came. Of course, I never expected my time to come soon. But for me it came at 33. And as I hung onto life, for dear life, I realized how little we know about things until we have been there ourselves. We do not know it will be like, or what we will want until it happens to us. When I found myself in that condition, I knew that I wanted to live. And as I lay in the hospital bed listening to the doctors talk about my impending death and their plans not to treat me, I can assure you that my idea of the right thing to do for an incapacitated person had drastically changed. Let me tell you what it was like to be aware of what is going on but to have to rely on others to speak for you. When they inserted a feeding tube into my stomach, thinking I could not feel, in fact, I could feel everything but I could do nothing. I felt everything they were doing. I felt every cut, every second. And I had no way to communicate. I was totally locked into my body, unable to speak, unable to move a muscle. And at one point my tube was turned off for 8 days and I suffered all the pains and agonies of starvation. I was in excruciating pain, in silence. I was on the inside screaming out: I do not want to die. Do not starve me. I want to live. Please feed me something. Now if you asked me today if it was worth going through everything I went through to live, I would say without doubt, without a hesitation, yes. As a disabled person, my life is as important as any life. My children love me as much as any children love their parents, my husband loves me as much as when I had the use of two good arms and two good legs. When I waged my fight to get treatment, the way life was viewed in this country was a potent weapon in my husband's fight to save me. It would not be so today. In 1995, you did not do your best to speed up death. You did not starve people to death assuming that it would be a painless death. Today people do. Today, courts back up selfish disregard for human life with court orders that terminate life. The courts do not even require evidence proving the issues of life and death beyond a reasonable doubt. You can take a life is the person's life is deemed by so-called experts to be not worth living. Courts are even willing to end lives based upon flimsy hearsay evidence presented by guardians who may no longer have their ward's best interests at heart or may even have a conflict of interest. In this country, in the year 2005, Federal judges and State judges said to people like me that we do not count. A judge said to my family that I was not worth as much as an able- bodied person. You think I am wrong? Then tell me of one case when this Congress or any courts of this land would allow you to starve to death an able-bodied male or female. Yet, that is just what was done in the Terri Schiavo case. If I am wrong, then explain it to me or to the other millions of disabled people in America, who, I might add, vote. No person should be put to death in this country again without providing that person the same rights you afford to mass murders. Michael Schiavo had the right to hire all the experts he wanted, and he had the money to do it using the $1.3 million he received in the malpractice case. Unbelievably, he was able to hire attorneys and experts who are proponents of euthanasia using the very money that was supposed to be used to treat and try to rehabilitate Terri. Scott Petersen, at the people's expense, got all the experts he needed to defend his life. But faced with the prospect of having a judge end her life, Terri Schiavo initially had no experts to speak for her and had no attorney to speak in her favor for her life, and she could not even use the funds recovered in the malpractice case for her to get the help she needed in the legal system. There is no balance of fairness afforded to her. So here comes my opinion. Never again allow judges the sole discretion to make these kinds of decisions without affording the condemned all the rights of a criminal accused. Give the courts clear direction forcing them to make the guardian prove every element of a case that would result in taking a human life, no matter what condition that human life is in, beyond a reasonable doubt. Never allow simple hearsay evidence on any matter that would take a life. Make it mandatory for every disabled person to have a lawyer whose sole job is to argue for his or her life with the presumption in the favor of life. And in all such cases pay for that lawyer if the person cannot afford it. Provide that lawyer with all the tools he or she would have if they were defending a mass murder. We are not asking for special rights. Disabled people do not want to be treated as special human beings. They just want to be treated as human beings. Thank you. [The prepared statement of Ms. Adamson follows:] <GRAPHICS NOT AVAILABLE IN TIFF FORMAT> Mr. Souder. Thank you very much for your testimony. We will now close with Mr. Robert Destro, professor at Columbus School of Law, The Catholic University of America. And you really did not have to have an accident to try to testify today. [Laughter.] STATEMENT OF ROBERT DESTRO Mr. Destro. Thank you, Mr. Chairman. I do apologize for not getting a statement in to you. But as you can see, I am living proof of the adage that anyone can become disabled at the blink of an eye. And mine was, unfortunately, at the blink of a Washington flyer taxicab that rear-ended my car last week. So I did not get a chance to finish it. With your permission, I will submit the written comments for the record. I appear today not only as a civil rights advocate who specializes in discrimination on the basis of disability and religion, I was privileged to serve as counsel for both Governor Bush and the Schindler family in the Schiavo case. And if I can underscore anything in my testimony today, it would really be that I really do not think, based on my experience certainly as a member of the Civil Rights Commission back in the 1980's, as well as in my experience throughout the Schiavo case, that either the courts or the media really understand the issue of discrimination against people with disabilities, especially those involving disabilities caused by a brain injury or a disease. I think that it is kind of the ultimate when you listen to the discussion of people on CNN and Fox News and MSNBC, you can almost hear the, ``Well I really would not want to live that way if that were me.'' But it is not them, and it is not the job of the lawyers or the doctors or the guardians or the judges to project their feelings on someone with a disability. As my colleagues on the panel have pointed out, and in far better terms than I could ever do, the reality of what a person with a disability experiences is known to them and can be experienced. And as one of the commentators on Fox News pointed out to me when I told him that really our goal in the Schiavo case, after Congress passed the law, was to get the case in front of a jury, and he was a little bit surprised about that because he assumed, like many people did, that this was just a bunch of crazy pro-lifers who were out to keep somebody who really wanted to die alive. But the fact of the matter is that Judge Greer himself abrogated Florida law when he found that Terri was partially cognizant of things and that, as a matter of fact, under Florida law she was not in a persistent vegetative state. And he was quite shocked. He said, ``Do you really want to go to a jury? Why?'' And the answer is, ``Well, we really do need to know what her condition is.'' Before we start making distinctions and make determinations that can never be reversed, we need to know what is the actual condition of the patient. We would expect that in an informed consent proceeding for a person who does not have any disabilities but who is about to undergo some kind of corrective or even cosmetic surgery. And there is no excuse for not doing it in the case of a person who is alleged to be in either a persistent or a minimally conscious state. The problem I think is twofold, especially in dealing with severe brain injuries: We really do not know what happens in the brains of people who are in these conditions. The technology exists now to start to learn how they deal with things. In fact, it was extraordinarily frustrating for me as one of the attorneys when we were in court and the judges would say how do you intend to prove X? And we would say, ``Your Honor, we have these witnesses right here, we can just swear them.'' ``Well, we do not really want to hear about that right now. Let us go on to the next one.'' And we would say, ``Well, we have got these witnesses that we can swear and they can tell you about that.'' ``Well, no, we do not really want to hear about that now.'' And at the end, what they basically decided is that they did not really care about the evidence because, in the end, people like Terri probably really would not want to live that way anyway. And so, as Mr. Sedlmeyer pointed out, doctors assume a lot. The medical textbooks are replete with all kinds of quackery that today we recognize as quackery, that 15 years down the road we recognized that we had an obligation to people. The courts simply do not get it either. They will rely on doctors who, as Dr. Cranford in the Terri Schiavo case pointed out to me, he said, you know, they really did not cross-examine me very well. He said, of course, if somebody would have asked me, I would have said that Terri Schiavo should have been put in a functional MRI machine and we should have seen how her brain worked. But the court would have not gone along with it and neither would Michael Schiavo. Well, the fact of the matter is, as Ms. Adamson put it, we would not starve Scott Petersen to death because under the Geneva Convention that is considered a horrific crime. But in the case of Terri Schiavo, the judge himself recognized that she might have been cognizant of what was happening to her, and we certainly believe that she was. So what you have here is a debate that focuses on whether people should be allowed to die. Dr. Young talked a lot about the statistics and how many people, and, gee, we really do not want to be getting involved in these processes. Well, the government is involved in these processes. It has been involved for a long time under Medicare and Medicaid. And as a matter of fact, Terri Schiavo, who was not dead yet and who was not dying, was in a hospice. My own view is that somebody ought to be looking at the Medicare and Medicaid problems associated with that one, because beside her brain injury, she was as healthy as a horse and that is why it took her so long to die. So that what I think we have here in the case of people with disabilities is there is a lot of projection that goes on. People who we might call in other context do-gooders are really paternalistic. And as Ms. Adamson pointed out, all you really need here is for people with disabilities to get the same rights as everyone else. But, you know, we have a system in which people with disabilities and foster kids get lost. And if you look at Terri Schiavo's case, and I know I am out of time and I will be done in 1 second, the Florida Department of Children and Families had an obligation for 15 years to look in on Terri Schiavo, but they lost her just like they lost those kids in foster care. And they could not even show up on the last day at the hearing. They said they were going to be in the Federal court to support us, but they did not even show up for the hearing then. So we have a lot of people paid for with Federal money who are asleep at the switch. I will leave it at that. Thank you, Mr. Chairman. Mr. Souder. Well one of the important things about this panel is that none of us move probably an hour, 30 minutes, without somebody bringing up cost pressures. In other words, when we go back to our offices we will read memos, we will read articles, we will have groups come in on health care. We hear this constantly. And to have a human face on the tradeoffs we make is really important because it is so easy to just move the numbers around and look at the numbers. These are tough decisions because when dollars are spent on high-risk cases, it means there are less dollars for other things, and how we prioritize this. We need to know the human faces and what moral and ethical decisions we are making, and what less than medical knowledge decisions we are making, and how the legal process, Congressman Cummings said earlier, for all kinds of children's cases we have advocates and guardians, how do we work through this kind of process. It is amazingly difficult. But you have really put a human face on this. Now in a question that we have had several times, and I just want to make sure we get this on the record to clarify, we have had several references today to Scott Petersen, whether or not there is pain, one member said earlier and I heard all over the media, that this is not painful, Ms. Adamson had a little bit different type of testimony, and if you want to start with this one, but even at the end process, if it is so painless, why would we not use that process as opposed to the electric chair? Maybe Mr. Destro can respond. And even if it is painless, if you can drug somebody enough, does that mean it is right? Those are some fundamental questions here. Anybody want to talk to that? Ms. Adamson. Well, that is exactly one of mine. With Terri Schiavo, if she was, in fact, like they are saying, not able to feel anything, then why give her all that morphine? Ms. Coleman. There is an issue here about end of life, actual end of life care for people who are eminently dying. When my father died of bone cancer, in the last 5 days of his life he stopped consuming; he did not want to drink or eat. And he was in hospice at home and getting very good care. We moistened his mouth and provided the medications. I think that it would have been painful to him to get fluids because he was physiologically shutting down, he was in renal failure. That is not the same thing as taking away food and water from a healthy person or even an ill person who has still got time ahead of them. What has happened is that some of these bioethicists have conflated these issues. They have gone on television and told everybody that the one situation is the same as the other. And because so many people have been through the other, they think that we are lying. It does not make any sense, but it does seem to be how hard this agenda has been pushed with falsehood, really. Mr. Souder. Mr. Destro. Mr. Destro. Mr. Chairman, if I can just add. I think one of the most telling parts of the Terri Schiavo story is that her guardian, during the period of time in which Terri's law was applicable, he was all over the news media, on CNN, particularly, they had him on, and they really gave the impression that he was a doctor. He did have a doctorate, but his doctorate was in public health and his specialty was in health care finance. He was appointed as Terri Schiavo's guardian. Now why someone with a doctorate and a specialty in health care finance is looking at the brain capabilities of someone in allegedly minimally conscious state, I do not know. But I think that fact alone tells you a big story. Mr. Souder. Mr. Destro, and whoever else on this panel may know the answer to this question, how common are these cases or similar cases, and what numbers are we dealing with? You heard Dr. Young say 2,500 in the one study was an estimate. What familiarity do you have, and what kind of range and type of cases are we talking? Mr. Destro. Well, I think there is a large range of cases. I think if you are talking about people who are in a persistent vegetative state, if you take, on the one extreme, people who are in a coma, and then you take people who are just affected, like my great aunt is, with dementia, the beginning stages of Alzheimer's or dementia, if people are developing these mental disabilities, all you need to do is go down and find the nearest nursing home and walk down the hallways and see how people are treated there. We treat them as warehouse patients. And there is a lot of those cases, and the Federal Government is picking up a lot of the tab. The Schindler family certainly would have been happy if they had sent Terri home. It would have been a lot cheaper to have her at home than if we had had her in this hospice, that I am absolutely sure that the Federal Government paid for. My point is that I think this population is quite a bit larger than people make it out to be. And it is in the lack of rehab where I have my concerns. We know enough now, U.S. News and World Report, USA Today, all these things are coming out with all the magical ways in which the brain works. And we really do not know what that rehab is doing and what effect that attempt at least to mainstream Mr. Sedlmeyer's daughter is having on her. We will never know unless we can open her up to the point where she can tell us. Mr. Souder. Ms. Watson. Ms. Watson. I guess it is attorney Destro? Mr. Destro. Yes, ma'am. Ms. Watson. What are you asking of Congress? As an attorney, are you asking us something along legal lines to determine when a person gets cutoff from life support? Are you asking for us to play role in the decisions? It is not clear to me. I would like to take this off of the Terri Schiavo case; that is one case. And as I understand, there are thousands of them. I am trying, for my own edification, to see what role people out there want Congress to play in these decisions. So as an attorney, can you enlighten us. What is it that you would be seeking? Mr. Destro. That is a very good question. I appreciate your asking it. I think if we had a clearer answer in the Schiavo statute, it would have been helpful. What I would say is that we want to make sure that for every Federal dollar spent the patient or the patient's advocate--and in cases where there are not advocates for the patient, that there should be some--that the patient or the patient's advocate has the highest level of informed consent and procedural due process possible. If we go back many, many, many moons to one of the worst civil rights cases that has ever been decided, which is Dred Scott, Justice Tawney talked about Black people not having any rights that White people were bound to respect. And what I am telling you is that it is in the process, that is why we have a due process clause, it is in the process by which we deal with people with disabilities that I think the discrimination takes place. And so what I would like to see Congress do is craft some rules that talk about the process that you go through in the decisionmaking process. Ms. Watson. Relative to State courts, district courts? I am trying to pin down--see, this was an individual case. Mr. Destro. Yes. Ms. Watson. And I am not sure if we had a role to play in that decision. There has been a lot of critique on the various levels of courts that were involved in this decision. And so, as an attorney, when you say an ``advocate,'' this would not be the guardian, this would not be the family, this would not be the medical professional. I am trying in my mind to narrow down what role, what responsibility we have. And are you talking about changing the courts? What is it that you see there is a gap or a loop and we need to fill it? Mr. Destro. Well the first gap would be in hotly disputed cases, like you had. I would suggest strongly that you amend the habeas corpus rules to allow for a due process review, just like you would in a Scott Petersen case. But on the other end of the spectrum, I think that we desperately need in Federal programs training for judges, for advocates, for court- appointed special advocates, and for guardian ad litem with respect to the reality of the problems of people with disabilities. And that I do think is an appropriate Federal role. Mr. Souder. Ms. Watson, could you let Ms. Coleman respond. Ms. Watson. Yes, Ms. Coleman. Ms. Coleman. To answer part of the question with a study, there have been a number of studies of caregiver family members of people with Alzheimer's, in one that was reported last year, it was about the sixth of such, it had found that the caregiver family member underrated the quality of life of the individual with Alzheimer's lower than the person themself rated their own quality of life with Alzheimer's. This sixth study tried to figure out why. And they learned that the caregiver was projecting their own personal misery at the burdens of caregiving onto their relative and thereby underrating their quality of life. Now the disability community has been kind of locked out of all these discussions. But I just want to say, to coin a popular phrase, well Duh. We know this. This is the way the world is, that it is not uncommon. Many caregivers are not like my co-presenter here today. So people with disabilities feel that we need protection, legal protection for those situations where our existence is not respected, be it by family members, health care providers, all kinds of folks. We still feel that our rights deserve, we deserve equality under the law, and there should not be a cognitive test for personhood under the Constitution of the United States. Ms. Watson. Many years ago, Public Law 94-142 specified, and I think you might know that, in education what needed to be done for the disabled. And I feel the disability community has been very strong and up to the challenge in the past. What I am trying to get out, and maybe this panel is not the right one, and maybe this committee is not the committee, maybe it should go to Judiciary, what is it that all of you here who came to testify would like to see us do at the Federal level in terms of refining the law? We do not make laws for the States; we do over-arching laws that are national. So, what is it that you would like to see us do for the disabled community? Can anyone address that? Ms. Coleman. I think that what we have been trying to do is come together as a community, the same groups and others as the ones you were referencing who worked on Public Law 94-142, but we have not yet had the time, given the rush of this process, to really try to bring together all the diverse communities both within and without the disability community to iron out what do we think would work best. We do think that there needs to be some kind of substantive standard. We would certainly be willing to look at what Congressman Weldon was talking about earlier today, and perhaps there are other ideas, and we would like to be able to bring them back in an appropriate way, perhaps the committee that you are suggesting, Judiciary. We are here to work this through. I do not think there are really easy answers about the substantive response. I do think, though, that we need information and data that has not been collected. We feel that the failure to collect that data has been, to some extent, engineered by the bioethics agenda, which is about creating a standard for health care rationing we think that has to do with based on disability. We would like to see that looked at and sorted through and get real data to work with. Ms. Watson. Maybe let me just suggest, if I have a minute, Mr. Chairman, Danny Davis, Representative from Illinois, has H.R. 910, but it deals with Medicaid and community-based attendant services. Ms. Coleman. MiCASSA. We support that. Ms. Watson. Yes. And I would think you might want to get in touch with the sponsor of this bill. It is moving I guess on a track, but you would have time, I am sure, to meet with your communities and maybe suggest some amendments if this is not inclusive enough. You might want to get in touch with office as to some ideas that the Association comes up with. Ms. Coleman. I think we will talk to the group that is the lead sponsor of that. I am from Illinois, so it was actually Congressman Davis that helped me connect up with this hearing today. Ms. Watson. Thank you, Mr. Chairman. Mr. Souder. Thank you. Mr. Cummings? And I know, Ms. Coleman, if you need to leave, you have a plane. Ms. Coleman. Yes, I do. Thank you. Mr. Cummings. Mr. Coleman, if you leave, I just wanted to thank you. And I want to say to all of you, I thank you for your testimony. I think the sad part about this entire thing is all about we are in a political atmosphere. I think politics has just made this total thing a mess. And the sad part about it is that a lot of times when you get the political piece in it, you forget about the disabilities community that you talked about. I know that when this issue came before us, a lot of us did not like the idea that it was brought before us, but we had to make decisions. It was a tough decision, talking about Schiavo now, and the interesting thing is that I think most Members of Congress when they look at this from a disabilities standpoint, they have to at least pause and say let us really look at this very carefully. The sad part about it is that when the politics comes in, the considerations become more difficult to make because it all becomes a part of a whole ball of wax, sadly. What I am saying to you is, I listened very carefully to Ms. Watson's questions, and one of the things I thought about as she was asking the question, I think we all want to, I am sure Chairman Souder does too, want to come to some conclusions and try to figure out how do we be fair and protect those who are vulnerable. All of you, the stories have been just incredible. Ms. Adamson. Mr. Cummings, could I say something? Mr. Cummings. Sure. Ms. Adamson. I want to mention, I have had an incredible recovery. I am still paralyzed, but I have had 10 years in and out of rehab. Had it not been for my husband being an attorney and screaming and yelling to get the insurance company and the doctors to give me treatment--and I had private insurance, now look at the people who do not have any insurance--they wanted to ship me off to a skilled nursing facility. I cannot tell you around the world how many e-mails I get from families who are told this is a hopeless situation, give up, and the families do not want to give up. And had it not been for my husband fighting for me, and then I had to be willing to do the rehab not knowing if I would ever get better. I think that was the most scariest thing for me, not having the answers but trusting that I just had to live in the moment and take it day by day and give it my best effort. So you are looking at somebody who has had a lot of rehab. Unfortunately, people that do not have health care insurance, they do not have an advocate who is that squeaky wheel, do get shipped off and warehoused. Mr. Cummings. And not only get shipped off and warehoused, but often die. Ms. Adamson. Yes. And what is scary, too, is that rehabilitation program that I went into in 1995 is no longer available; 20, 30 years ago, a patient would be looking at 9 months in the hospital to recover. Mr. Cummings. Excuse me. Dr. Coleman, I understand. You look like you are trying to be very polite, but we do not want you to be so polite that you miss your plane. Ms. Coleman. Thank you. Mr. Cummings. Excuse me, Ms. Adamson. Ms. Adamson. But I wanted to say--what was I saying? Mr. Cummings. You were just talking about your rehabilitation and a program that no longer exists that existed back then. Ms. Adamson. Right. Now, you are lucky if you can get 6 weeks and they want you out. That is the scariest thing to me. Based on the fact that I was 33, they looked at it, as opposed to someone who was in their 70's or 80's, I got turned down by rehabilitation as well because they felt that I had no chance of recovery. And I went in on the spinal cord team, not the stroke team, because of my condition. So had I not had an advocate who was going to fight, I would not be sitting here. Mr. Cummings. I think that Senator Obama has an expression that I would use so often, and it is just so accurate. He says, ``Sometimes in our society we have an empathy deficit.'' I think that we need to figure out how it is that we can be fair to all of us, period, to ourselves. It seems like everybody kind of thinks that they will never find themselves in these positions, or they will never have a family member in these positions, and so they kind of just float on down the road. But these things are happening every day. I really do appreciate you all coming in and telling the Nation and telling us about your situations. I think it has to cause all of us to just pause and figure out, again, like I said, what we can do to be fair, to make sure that we are not just guided by financial considerations. Because let me tell you something, if it is just finance, a whole lot of people are going down the drain, period. I think we have to also look at how is it that we can look at our Medicare/Medicaid system and see what it is that we can do within that system to try to come up with that fairness and value everybody's life. Mr. Sedlmeyer, I want to thank you, too. When I listened to your testimony, I could not help but be moved when you said one of your favorite roles is being a father. I can relate. I think you said a lot for fatherhood and your wife has said a lot for motherhood, too. I am just glad that you were here to share your story, and you too. Mr. Destro. Mr. Cummings, if I could just add something just briefly. I think that in one respect the question really is not how can we be fair. I think the question is really how can we be informed and how can caregivers be informed. As a matter of informed consent, all of us have the right to choose. But the choice should be based on facts out there. And I think that the Federal Government has a superb role to play in making sure that caregivers are well-informed. If there is going to be Medicare or Medicaid payment, that the caregivers need to be trained and they need to be well-informed. I found out during the course of the Schiavo litigation that just a superb judge in King County, WA, set up the court- appointed Special Advocate Program because he noticed that in juvenile courts these people in guardianship proceedings just were not getting good representation, either by the attorneys or by their special advocates. And so what he set up was a training program. And it seems to me that judges have to do mandatory continuing judicial education, lawyers have to do mandatory continuing education. It seems to me that we would all be better off if we understood the nature of these conditions. And I think that is something that you all could really do. Thank you. Mr. Cummings. I know in our State courts we have quite a few judges in each county. In Baltimore, for example, there may be 35 judges and 2 or 3 of them are assigned to these kinds of cases. So it would not necessarily require the training of all the judges, but some who would deal with these. Mr. Chairman, as I close, I would just ask unanimous consent that the statement of Arthur Kaplan with the Department of Medical Ethics, University of Pennsylvania, be admitted. We had wanted him to appear but he could not. And that the case of Cruzan v. Director, Missouri Department of Health, a Supreme Court case, 497 U.S. 261, be made a part of the record. Mr. Souder. Without objection, so ordered. Congresswoman Watson, do you have anything? Ms. Watson. Yes. I, too, would like to thank all of those who took the time to come today. I represent the State of California, Los Angeles, and I served as chair of the health and human services committee for 17 years. We had cases like this in front of us often. So what we did, what I did was carry legislation to require every single hospital to have a biomedical committee that would discuss these end of life issues. As was said by Representative Cummings, we are political figures and very few sitting in our chambers, I was in the Senate, were medical doctors. But we required every hospital that served the public to have a biomedical committee to discuss these ethical and moral issues. It was very difficult to deal with them from our position. No. 2, we argued against allowing the HMO movement, health maintenance organizations, because, Ms. Adamson, they did control the amount of hours and time, you would dial into a number and the person at the other end can tell you whether that is a particular service or procedure that could be provided. And I think there was something wrong with that. What we did, we had to put it into the hands of those people who were trained. So I carried legislation that said we should have informed consent when you do an invasive treatment, so that the patient along with the provider could exchange information and raise the right questions, so when a patient made a decision to go ahead, that patient would know all about it. So there are a lot of things that need to be done. The problem is we have 50 States. Ms. Adamson. I am in California, too. Ms. Watson. So I am trying to glean out of this, Mr. Chairman, just what we can do. Also in our State, we have continuous education required for not only our justices, but our judges and attorneys at will. But it is always out there. You know, there are new technologies, new medical provisions, and methods and so on that change rapidly. And so how you grapple with this and not get specific to an individual case is really a challenge that we have. So, if any of you, or all of you, would like to write to me and enlighten me on what we could do, I would be happy to consider it. Because, believe me, and I am sure the Chair also, there are so many, on this Schiavo case, there are so many intricate facts that we just do not know, and I understand it was heard before 24 judges in 6 courts, and there was representation on both sides, and so on. So I wanted to get away from a specific case, not having all the facts and not having all the professionals in front of us. But I would entertain any kind of information you provide me with. Ms. Adamson. Well we may just have to do lunch because I am from Los Angeles. I may write to you. [Laughter.] Ms. Watson. Good, and I would welcome that to help us through this. Ms. Adamson. I think, yes, we need to clarify the rights of the disabled. Ms. Watson. Thank you, Mr. Chairman. Mr. Souder. Do any of the witnesses have any closing comments? Mr. Destro. I do have one, and that is, I think we should make sure that we try and understand that not all of the things we are talking about are very expensive. One of the things I have learned in watching my wife, who has a doctorate in social work, work through a national training program on adoption awareness, crisis pregnancy counselling for women with unplanned pregnancies, is that many times the advocates simply just do not know. And these training programs are extraordinarily cost-effective. And in the course of that, I came to know an excellent nurse practitioner who has done quite an interesting job in training judges, domestic relations judges. One of the most effective ways of judges keeping control of violent people in their courtroom, which we saw down in Georgia, is to have some food, crackers, in their drawer, because people who have a can of coke or some crackers to munch on do not shoot people. Ms. Watson. Give them some chocolate. Mr. Destro. Exactly. And it makes them feel good. But a lot of this stuff is a lot more cost-effective if you give control back to people and do not leave it in the hands of the so- called experts and committees. As my former colleague and friend on the Civil Rights Commission, Mary Frances Barry said during a discussion of AIDS related discrimination about 15 years ago, and she pointed right at one of the bioethicists, and I will leave his name out of the record today, and she said, ``How do you get to be one of those? Do you just hang your shingle out and become a bioethicist?'' There is no question that there is an ideology there and that it is at odds with what I believe are the duties that we all have to our neighbors and friends with disabilities. They are more concerned about the finances than we are. So it seems to me that a lot of the stuff that we can do is actually pretty cheap and cost-effective if you just give it back to people and let them use their ingenuity. Thank you. Mr. Souder. Mr. Sedlmeyer, do you have any comments? Mr. Sedlmeyer. Am I on? Yes, I would like to make a comment. I would like to direct it to Ms. Watson, because you have said more than once tell us how we can help you, tell us what we can do. And from my perspective as a caregiver, I would like to suggest two things that you might be able to do. One, of course, and I know we are very limited on this, but money does make a big difference. Having the funds available to give the care that is needed to one that you love is indispensable. And it is through programs like the Medicaid Waiver Program that we have been able to keep Valerie at home. And I know you have to make difficult decisions on budgeting, and I know the Medicaid funds to the States have been reduced, and we understand and we are willing to make those kinds of financial sacrifices to keep our daughter at home. But as you pondering your budgets, your Medicaid, your Medicare budget, please keep in mind those programs that may in the long run yield beneficial results in terms of the bottom line. I think the longer we can keep Valerie at home with us, the better it will be for everyone--her, us, and the whole health care system. Second, I have heard Mr. Cummings address this, you all say you are political creatures. But you know what? You are leaders of this Nation and your perspective on issues of this magnitude is important. In a sense, you all have bully pulpits. And one of the things that really concerned me early in Valerie's life, it was at the point where her feeding tube was going to be inserted--I did not say this in my testimony, but Valerie is a twin, her twin sister is Vanessa, Vanessa is perfect in every way--my pediatrician came up to me before the surgery and he said to me, ``If something goes wrong during the surgery, what do you want me to do?'' And I looked at him and I said, ``I want you to do the same thing that you would do for her sister.'' So, you see, in some sense it is all a matter of perception. I believe you in Congress and you in the Senate have the ability because of your positions, because of your access to the media, because you have a strong voice in this Nation, you can change the perception of people in our Nation to treat, as we have heard all the other ones on this panel say, we do not want special rights either as individuals or for our children, we just want the same civil rights as everyone else. Mr. Souder. Thank you very much. And I think on that note we will conclude. I want to thank Ms. Adamson, too. I watched you multiple times on television during the national debates, as well as Mr. Destro. We are in an interesting situation here in Congress. Had we been discussing this issue a few weeks ago, everybody in the world would have been focused very closely. But this is the real business of how we govern, not kind of a TV show. We had both good and bad come out of that whole process in Florida. The good thing was we had some public discussion and kind of first awareness. The bad thing is now people are so confused that it may be more difficult in fact to move legislation. It got into the political arena, which happens with any bill we move through. But we knew potentially by coming back that Sunday night, when were in a very kind of end of the alternative road, that it was going to get to become a political football, which it did. All of a sudden what was bipartisan support and trying to deal with the broader issue became focused on one case, very confused, and family questions, what did the judges see and not see. And in reality, we have to learn from that experience, when it was an experience that was so public that now people are just loaded with opinions that may or may not be factual, and all of us are confused, Members of Congress are confused, because we all tended to choose sides and only wanted to get the information that came from that side. Now we have to try to sort through actual legislation and go back and kind of reinvent the wheel to where we were before the case, but with now a much more quasi-informed public, quasi-informed Members, and at the same time everybody understanding we have some problems around the country. Often, these types of cases, sometimes it was like, as I argue, the Judge Thomas hearings for the Supreme Court did more to define sexual harassment in America, which was not necessarily relevant to anything he did, but because people watched the debate, people changed their behaviors and they started to adjust and learn. Hopefully, as an oversight committee, this helps move that forward. As legislation moves, it will move through different committees, and in our HHS oversight we will continue to look at this, and we also have Justice Department oversight. So as we look at this among the many issues we deal with, this has been a very helpful first hearing for you to put a human face on it, and we thank you very much for taking the time to do so. With that, this subcommittee stands adjourned. [Whereupon, at 4:52 p.m., the subcommittee was adjourned.] [Additional information submitted for the hearing record follows:] <GRAPHICS NOT AVAILABLE IN TIFF FORMAT> <all>