Washington Watch, SPECIAL EDITION
April 11, 2005
IN THIS ISSUE...
TERRI SCHIAVO CAPTURES THE WORLD'S ATTENTION AND RAISES DEEP ETHICAL QUESTIONS
- GUEST OPINION - ALL LIVES ARE EQUAL UNDER THE LAW
A History of the Terri Schiavo Case
How it Started - On February 25, 1990, at the age of 26, Terri Schiavo's heart stopped beating temporarily, and oxygen was cut off to her brain, causing severe brain damage. Numerous explanations exist as to why her heart stopped-from an undiagnosed illness, to a potassium imbalance possibly brought on by bulimia, to allegations of abuse on the part of her husband.
The Schiavo Malpractice Suit and Award - In 1991, Michael Schiavo sued the doctors he accused of misdiagnosing his wife. In November 1992, he won the case and was awarded $700,000 for his wife's care and $300,000 for his "loss of spousal companionship." Soon thereafter, the Florida state court appointed Michael Schiavo as plenary guardian and proxy for Terri Schiavo. In 1993, Terri Schiavo's parents, Bob and Mary Schindler, filed a petition to have Michael Schiavo removed as Terri Schiavo's guardian. The case was later dismissed. Over the years, claims have been made that Michael Schiavo spent more than $550,000, the majority of his wife's rehabilitation funds, on attorneys, primarily to get a court order that would result in her death. Others dispute that claim, however, saying the funds went for care and rehabilitation efforts. Most agree that the funds have been exhausted for a number of years.
The First Court-appointed Guardian Ad Litem - In March 1994, John H. Pecarek was appointed guardian ad litem for Terri Schiavo to determine her husband's appropriateness as her guardian and proxy. In his report, he stated that Michael Schiavo had acted appropriately and attentively toward Terri Schiavo and did not recommend his removal as guardian.
The Court Struggles Begins - In May 1998, eight years after Terri Schiavo sustained her brain injury, Michael Schiavo filed a petition with the Florida Circuit Court to remove her feeding tube. He argued that nothing more could be done to rehabilitate her and that she had expressed to him that she would not want to live in such a condition. Her parents opposed, and a court battle ensued. In February 2000, Pinellas Circuit Judge George Greer ruled that these were Terri Schiavo's wishes and that the feeding tube could be removed.
The Second Court-appointed Guardian Ad Litem - During this Circuit Court process, Michael Schiavo disclosed that he had two significant conflicts of interest. First, he was likely to want to remarry eventually, and second, if Terri died, he would inherit the more than $700,000 then on deposit in her trust account. Because of these conflicts of interest, the Probate Court appointed Richard L. Pearse Jr. as Terri's guardian ad litem and instructed him to investigate the matter of the withdrawal of nutrition and hydration and report back with a recommendation. Pearse filed his report with the court on December 28, 1998 urging that the court deny the petition to remove Terri Schiavo's food and water.
In April 2001, after a trial and a number of legal proceedings, Schiavo's feeding tube was removed. Two days later, Federal District Court Judge Richard Lazzara ordered doctors to resume the feeding tube in order to permit more time for deliberation. At the same time, U. S. Supreme Court Justice Anthony M. Kennedy refused to stay the case for a review by that Court. In November 2002, after several more hearings in which both sides brought numerous witnesses and experts, Judge Greer ruled that there was no evidence that Terri Schiavo had any hope of recovery and that she would not wish to continue receiving nourishment and hydration through a surgically implanted tube. He ordered the feeding tube to be removed on January 3, 2003. Again, there was a stay, pending an appeal. In June 2003, the Second District Court of Appeals upheld Judge Greer's ruling to remove the tube.
Florida's Governor and Legislature Step In - In late August 2003, Florida Governor Jeb Bush stepped into the case and asked the District Court to appoint new guardian for Schiavo. The Court did not act. In September, her parents petitioned the Federal Court to block removal of the feeding tube. They were denied. The feeding tube was scheduled to be removed on October 15, 2003. In early October, Governor Bush filed a federal court brief urging that Shiavo be kept alive. He was denied. Doctors removed the feeding tube on October 15, and in the first incident of legislative intervention in the case, the Florida State Legislature quickly passed a bill called "Terri's Law," allowing Governor Bush to intervene. The Governor ordered the feeding tube reinserted, and it was.
The Third Court-appointed Guardian Ad Litem - In November 2003, Dr. Jay Wolfson, a professor of public health and law at the University of South Florida, was appointed guardian ad litem for Terri Schiavo, specifically to review whether she could ever eat normally and to observe her potential for improvement. He conducted tests over a 30-day period and concluded that Schiavo would likely not ever be able to swallow and eat and that her lack of cognition was most likely permanent, although he made recommendations for further testing and evaluation that would be carried out only if Schiavo's parents and husband all agreed. No agreement was possible, and the recommendations were dropped. The Schindlers never agreed with Wolfson's evaluation of their daughter, and later brought in a speech pathologist from the Rehabilitation Institute of Chicago who also studied Schiavo. The speech pathologist asserted that Schiavo swallowed her own saliva and should be given additional swallowing tests and, if indicated, swallowing therapy.
The Fla. Courts, Legislature and Governor at Odds - Later that month, Michael Schiavo asked a Florida Court to strike down Terri's Law as unconstitutional. In May 2004, Judge Baird of the Pinellas County Court ruled that Terri's Law was unconstitutional. The case was appealed, and almost a year later, in September 2004, Florida's Supreme Court upheld the County Court ruling on the grounds that the law "violates the fundamental constitutional tenet of separation of powers," with the power of the courts being usurped by the legislative and executive branches of state government.
In October 2004, Governor Jeb Bush filed a motion for rehearing of the case and, in December, he asked the U.S. Supreme Court to accept the case for review. In January 2005, the Supreme Court rejected Jeb Bush's appeal to change the ruling. The Supreme Court has since rejected the case two more times. In February, the County Court Judge extended a last-minute stay and ordered doctors to wait for a further court ruling before removing Schiavo's feeding tube, and two days later, the judge issued a three week stay.
In March, the Florida Appeals Court refused to block removal of Terri Schiavo's feeding tube and set a March 18 deadline for the tube's removal. On March 17, the Schindlers filed an emergency motion with the U.S. Supreme Court to block the removal of the feeding tube, saying the lower courts need time to consider whether their daughter's religious freedom and due process rights have been violated. The Court declined to hear the case for a third time.
The U. S. Congress Steps In - On March 16 and 17, the U.S. Congress acted to block the removal of the feeding tube and subpoenaed Terri and Michael Schiavo to appear before Congressional committees. On March 18, Judge Greer blocked the subpoenas, and the feeding tube was removed. On March 20 and 21, the U.S. Congress passed emergency legislation calling for a federal court to be allowed to review the case, and it was signed immediately into law by President George Bush. The law allowed Terri Schiavo's parents, the Schindlers, to take the case before a federal court, which they did, asking for their daughter's feeding tube to be reinserted while further medical evaluations and legal investigations were conducted.
Appealing to the Federal Courts - On March 22, Federal Circuit Judge Whittemore refused to order doctors to resume feeding on the grounds that the family is unlikely to prevail in a new court case. The family immediately appealed, and on March 23, a panel of Appeals Court judges upheld the lower court decision. On March 24, the family filed a slightly revised complaint with the Federal Circuit Court. The Circuit Court Judge again refused to intervene. The Schindlers again appealed to the United States Court of Appeals for the 11th Circuit in Atlanta on March 29, and March 30, the appeals court again turned down their appeal. That same day, the U.S. Supreme Court, for the fourth time, also declined the Schindlers' appeal.
Schiavo Dies - On March 31, nearly two weeks after the removal of the feeding tube, Terri Schiavo died at the Pinellas Park, Florida hospice where she had lived for the past several years. The Schindler family held a funeral mass for Schiavo in Gulfport, Florida on Tuesday, April 5.
The U. S. Congress Discusses Schiavo, Senate Holds the First Hearing - The Senate and the House are currently discussing the issues raised by the Terri Schiavo's case. While the House has not scheduled any activity on the topic, the Senate Health, Education, Labor and Pensions (HELP) Committee held a hearing entitled, "Health Care Provided to Non-ambulatory Persons" on April 6.
For more about this hearing, see the article Senate HELP Committee Takes Up the Schiavo Case Issues.
Terri Schiavo Captures the World's Attention and Raises Deep Ethical Questions
The recent attention the world has paid to the situation of Terri Schiavo brings up some deep and serious discussions among people with disabilities, families, advocates, and those who provide services and supports. These are discussions about the very nature of life, the quality of life, health care, personal autonomy, choice and respect for individuals. There are also a host of questions about who should assist people with cognitive disabilities in decision-making, and for people with severe cognitive disabilities, who, if anyone, has the right to make life and death decisions for another person. All three branches of the federal government, the government of Schiavo's home state of Florida, as well as multitudes of private interests have spoken and acted on Terri Schiavo's case.
The Congress, the President and many others in the public eye have tried to put the case in the context of a broader ethical and political struggle to define when life ends, with echoes of the lingering question of when life begins. Many people say this is the wrong kind of test case for a nation struggling with such profound questions. What are those questions?
The Cognition and Awareness Question - There are neurologists and ethicists who said that Terri Schiavo would never have regained the functions she lost 15 years prior. These medical experts said that she would never again have had even minimal conscious awareness, and that she could not, in fact, feel sensations of hunger or thirst, let alone experience pain.
Schiavo's parents, Bob and Mary Schindler, on the other hand, continually argued that their daughter's condition was not as bad as most of the doctors suggested. They said she slept, woke up, blinked, and sometimes seemed to smile. They insisted that she was responsive to the presence of friends and relatives. A number of medical professionals have supported the Schindlers' contentions, saying there were not adequate or recent tests and that there were never enough attempts at rehabilitative therapies.
Many medical experts, however, say that such behaviors and facial expressions may give hope to families, but are only evidence that one's brain stem is working, keeping alive reflexes and routine bodily functions-not that one can respond to commands or track things visually, essential signs of consciousness. While there is evidence that Schiavo did have rehabilitative therapy, particularly in the early years after her heart attack, a majority of the experts said that the higher areas of brain functioning necessary for her to regain conscious awareness would never have returned.
Some disability activists have called for a nationwide moratorium on the withdrawal of nutrition and hydration from people who do not have an advance directive or durable power of attorney and who are alleged to be in a "persistent vegetative state." The moratorium call is based on a recent report indicating high levels of brain activity in people thought to be in a "minimally conscious state." The study, published in the February 2005 issue of Neurology, reported evidence that individuals diagnosed as being in a minimally conscious state may hear and understand much of what is going on around them, but are unable to respond. Given that there is a fine distinction between "persistent vegetative" and "minimally conscious," there are also physicians and other medical professionals who contend that Terri Schiavo was misdiagnosed. There are advocates calling for the moratorium so that individuals diagnosed as being in a persistent vegetative state can be evaluated in the same way as individuals in the study, using state-of-the-art testing for cognitive activity. "Minimally conscious" is a diagnosis that has come along in just the past few years and was not available when Terri Schiavo was initially diagnosed.
The question of "how do we know if someone is cognitively aware?" is of great interest to disability advocates and to society at-large. Ongoing advances in medical diagnosis, treatment and technologies are likely to make the question a moving target, to be revisited at each new scientific turn.
The "Who Decides" Question - Some consider the main point of Terri Schiavo's case to be the issue of decision-making. Many people fault the Congress and the Florida Legislature for intruding on sensitive "personal" or "family" decisions. Others think it is not even a legitimate matter for the courts. Others think that it absolutely is an appropriate matter for governmental entities in their capacity as protectors of the people and the rights of individuals.
The national consciousness about living wills (advance directives) and durable powers of attorney for health care has been elevated by this case, and everyone is being urged to put these instruments in place for themselves and their families. There is broad agreement that this is a good idea, but not everyone is convinced that these instruments will fully guard against the "intrusion" of medical professionals, experts or even loved ones, leading to the denial of the terms of a living will at a critical moment of decision. What if the living will was made too long ago? What if the person changed her/his mind and didn't update their document? What if a person could not predict what s/he would want in the distant future? What if others simply felt obligated and motivated to speak for the person who could not speak, regardless of the individual's written desires? Can living wills or advance directives work for individuals with significant cognitive disabilities? Some of the legislation proposed by the Congress in recent weeks, in fact, would provide for courts to override living wills or advance directives under certain circumstances.
Guardianship gives the powers of decision-making to another person, presumably one who would meet the approval of the incapacitated individual. Nonetheless, disability advocates often fight for the constitutional rights of the individual against the statutory rights of a guardian under various circumstances, including those that came to light in the Schiavo case. Terri Schiavo's husband has said she expressed a verbal desire not to receive treatment if she were ever in such a situation, a claim that was repeatedly upheld in court. Some have questioned his motives and his commitment, saying that Michael Schiavo, "the estranged husband," who remained married to Terri but moved on with his life, was not representing his wife's best interest. Would parents or siblings who might not have spent a great deal of "adult" time with a person be better? Should the statutory presumption that a spouse is the best guardian be immutable? Some ethicists say that Terri Schiavo's verbally expressed wish not to be kept alive should have been respected, regardless of whether others agreed with her decision. They say that it is about personal autonomy. Others say that there is no credible evidence that Terri Schiavo would ever have rejected food and water. In early March 2005, Michael Schiavo refused an offer of $1 million from a California businessman to relinquish guardianship of his wife to her parents.
The Question of Rights - During the numerous debates involving Terri Schiavo over the years, many disability advocates have pointed to her rights under the Americans with Disabilities Act (ADA) and questioned why the law had not been raised in any of the court actions. Members of Congress have alluded to it in speeches and press releases in the course of passing legislation this March, drawing national attention to the possibility that Schiavo's ADA rights had been violated.
Finally, when they filed their complaint with the U.S. District Court in Florida in late March, Schiavo's parents made a claim based on the ADA, alleging that the removal of the feeding tube constituted "unlawful discrimination against her because of her disability." They cited a federal regulation that says that the ADA does not give the guardian of a person with a disability the right to refuse treatment on behalf of the individual. Given that the ADA had not previously been cited as a basis for the removal of the tube, however, this claim was somewhat late in being raised. The Schindlers also raised Terri Schiavo's rights in the context of the Rehabilitation Act of 1973, the Religious Land Use and Institutionalized Persons Act and the First, Eighth and Fourteenth Amendments to the Constitution.
On the other side of the argument is the right to decide to refuse medical treatment, based largely on the precedent set in the Nancy Cruzan case in 1990. This right was upheld by a series of courts in this case.
The "Quality of Life" Question - Is quality of life germane? Whose definition do we use? Who cares, or should care, about the quality of life of someone else? Many people with disabilities looked at Terri Schiavo and saw a woman with severe disabilities with a powerful will to live. Other people looked at her and didn't see much reason for her to go on. People with disabilities live in a world where "competency" is not an all-or-nothing thing, a world that seeks to respect the choices of people who may not be fully independent in decision-making, a world where relativity is all-important. A quality life to one person may not fit another's definition of quality. Many people with disabilities and their advocates feel strongly that while every individual has the right to determine her/his own definition of "quality of life," they feel equally strongly that no one has the right to make that determination for anyone else.
Where do The Arc and UCP stand? While neither The Arc nor United Cerebral Palsy (UCP) has an official position statement specifically and solely on withdrawal of nutrition and hydration, or on "persistent vegetative states," both organizations have positions or resolutions that address values relevant to cases similar to Terri Schiavo. For example, UCP has a resolution on Physician Assisted Suicide that says, "chronic or long-term disabling conditions are not the same as terminal illnesses," and "assumptions about 'quality of life' should not be used to marginalize and devalue the lives of people with disabilities." The Arc, in its position statement on Health Care asserts, "Disability must not be a factor in the decision to provide, delay, or withhold treatments..."
The Arc's position further states, "all decision-making by a surrogate decision-maker ... must always be consistent with the best interests of the individual. In addition, in decisions involving the refusal of medical treatments, or nutrition and hydration when such refusal will result in the death of the individual, the legal authority of the surrogate decision-maker should be limited. Specifically, that authority should be confined to those situations in which the person's condition is terminal, death is imminent, and any continuation or provision of treatment, nutrition and/or hydration would only serve to prolong dying. However, in such situations, people with mental retardation must be provided aggressive medical treatment to relieve pain, sustenance as medically indicated, and care designed to relieve isolation, fear, and physical discomfort."
Additionally, The Arc's statement addresses advance directives, saying, "advance directives...are appropriate whenever informed consent is assured and should be available and honored for individuals with mental retardation."
The Ongoing Debate - The ambiguities around issues posed in the Schiavo case-fundamental questions about life, death, and disability-are numerous, given the large number of legal maneuvers that occurred. Even as the Schiavo case fades from the news, the worldwide discussion about life, death, and disability is almost certain to spark an ongoing national debate. In fact, the U.S. Senate is already planning hearings on the issue in the near future and considering the possibility of federal legislation. State legislatures might also be expected to act on issues the case has presented. The courts will undoubtedly face them time and again. Governmental and private agencies, as well as public and private health care entities, will address them and try to craft rules and regulations that will eventually affect us all.
Like the general public, people with disabilities and their advocacy groups have diverse opinions on these issues. Many feel that there are no (or limited) circumstances under which a person with a disability should be treated in any way that would hasten her/his death. Others feel that the "right to die" is extremely important and that nothing should be done to limit that right, even for those who experience the most severe disabilities. But most agree that the wishes of the person, when known, should be honored.
As this debate continues, it is crucial for The Arc and United Cerebral Palsy to be there for people who experience all types of disabilities, particularly those who experience severe cognitive and/or physical disabilities. The issues are not easy, and there are no clear-cut answers. Stay tuned. The Disability Policy Collaboration will keep everyone posted.
For more background about the Terry Schiavo case, see the article A History of the Terri Schiavo Case.
Senate HELP Committee Takes Up Schiavo Case Issues
On April 6, the Senate Health, Education, Labor and Pensions Committee (HELP) held a hearing on "Health Care Provided to Non-ambulatory Persons."
The hearing opened with statements by Chairman Michael Enzi (R-WY) and Ranking Member, Edward Kennedy (D-MA). Emphasizing the "urgent need for Congress to examine current health care practices used in the care of nonambulatory individuals," Chairman Enzi nonetheless said that the Congress is beginning discussions in an attempt to determine what role, if any, it should play in crafting legislation related to the issues raised by the Terri Schiavo case. Senator Kennedy expressed strong criticism of Congressional action in the Schiavo case saying that "Republican leaders abused their positions of power to play politics with Terri Schiavo's life." Both the Chairman and Ranking Member, however, spoke of the need for a bipartisan effort going forward to address the sensitive and complex issues. The only other committee member at the sparsely attended hearing was Senator Richard Burr (R-NC), who defended the actions of Congress prior to Schiavo's death.
The hearing, originally scheduled for March 28, prior to Schiavo's death, was initially intended as a way to keep her alive. Invitations were issued to both Terri Schiavo and her husband Michael to appear as witnesses. It was delayed due to the action taken by Congress directly giving federal courts authority to review the case. After Schiavo's death on March 31, the hearing was re-focused, and a panel of witnesses invited to educate the Committee on medical treatment and care for people who are in "persistent vegetative states" or similar situations.
Rud Turnbull, co-director of the University of Kansas Beach Center on Disability, long-time volunteer for The Arc, and father of an adult son with multiple disabilities, was part of the panel. In his testimony, Turnbull urged Congress to recognize the needs of people who have intellectual and cognitive disabilities and ensure these needs are addressed and protected in any "end of life" legislation that might be passed. Turnbull urged Congress not to cut Medicaid funding, something that President Bush and the U.S. House have proposed in their Fiscal Year 2006 budgets." He noted that "preserving Medicaid as an entitlement is absolutely necessary for people with disabilities." Turnbull also asked Congress to pass the Family Opportunity Act and the Medicaid Community-based Attendant Services and Supports Act (MiCASSA) to make it easier for families with children with disabilities to qualify for Medicaid and for individuals living in institutions to live in the community.
Turnbull also highlighted relevant federal anti-discrimination laws and regulations, including the Child Abuse Amendments of 1984. The amendments set forth the "Principles of Treatment of Disabled Infants" and require doctors to provide all available medical treatment to keep infants born with severe disabilities alive. He cited the following portion of the principles:
A person's mental retardation or degree of disability must not be a factor in the decision to provide or withhold medical or dental treatment; Withholding or withdrawing treatment based on disability alone is illegal and can never be condoned; and The individual's medical condition and welfare must be the basis of the decision. Turnbull also spoke about some basic tenets of the Americans with Disabilities Act (ADA). Quoting sections of the ADA, he said that "disability is a natural part of the human experience and in no way diminishes the right of individuals to participate in or contribute to society," and "the nation's policy for people with disabilities is to assure their equal protection under the law, advance their self-determination, and promote their independent living."
J. Donald Schumacher, President and CEO of the National Hospice and Palliative Care Association, urged the Congress to pass bipartisan legislation such as S. 347, the Advance Directives Improvement and Education Act. S. 347 would authorize resources for a large-scale education campaign about living wills and other legal means of expressing individual desires about end-of-life care. The bill would, for example, allow Medicare beneficiaries a free visit to the doctor to discuss such issues; and it would ensure that advance medical directives are portable from one state to another. Schumacher said this bill could "increase the number of people in the United States who have advance directives, who have discussed their wishes with their physicians and families, and who have given copies of the directives to their loved ones, health-care providers, and legal representatives."
Dr. James L. Bernat, Professor of Medicine at Dartmouth Medical School, represented the American Academy of Neurology on the witness panel. Bernat discussed the differences between the "persistent vegetative state" (PVS) and the "minimally conscious state" (MCS), a topic of controversy toward the end of Terri Schiavo's life. Bernat gave the Senate Committee the medical perspective on both testing and treatments available for people who experience the conditions. Bernat defined "vegetative state" as a state of unconsciousness, but said that "the terminology is ambiguous because, although PVS patients are unaware, they are awake." He went on to say, "Because awareness is the most relevant component of consciousness, the loss of awareness counts as unconsciousness." He also said that "there is a biological limitation to our ability to know the awareness of another person," and that "we cannot get inside their minds and experience what they experience. Therefore, we can know their awareness only by inference... We infer whether they are aware by analyzing the quality of their responses and judge if a response is such that could be made only by an aware person." Bernat defined the "minimally conscious state" (MCS) as a "disorder of limited responsiveness in which patients retain awareness but their responses are so deficient that the evidence of their awareness may be difficult to detect."
Dr. Deborah Warden, Director of the Defense and Veterans Head Injury Program, testified at the hearing about brain injury and the recovery patterns and care needs of people who sustain brain injury.
Both Turnbull and Bernat indicated a strong dislike for the term "vegetative," acknowledging that "persistent vegetative state" was a term coined many decades ago as nothing more than a technical medical diagnosis, but asserting that "vegetative" had become a pejorative term in reference to individuals who experience cognitive disabilities. Chairman Enzi expressed his agreement with Turnbull and Bernat on the matter.
Aside from S. 347, it is unclear what Members of Congress might propose to address the issues raised in the hearing. Sen. Tom Harkin (D-IA), an original author of the Americans with Disabilities Act, is working on legislation in consultation with legal experts and advocates for people with disabilities that would allow for federal review in cases such as that of Terri Schiavo without removing jurisdiction from the states. Harkin's bill is expected to be unveiled in mid-April. Other members of Congress are reported to be contemplating legislative solutions to some of the issues posed in the Schiavo case, but many have recently stated their opposition to any federal intervention in such cases.
In the states, the primary locus of activity on consumer-related health care legislation, more than 100 bills involving living wills and advance health directives have surfaced in 30 states, according to the Health Policy Tracking Service. Some bills have passed based purely on the circumstances of the Schiavo case, such as the Alabama Starvation and Dehydration Prevention Act, which would bar the removal of a feeding tube without written instructions from the patient. In Pennsylvania, Republican State Senator Stewart J. Greenleaf has said he would revive legislation vetoed last year by Gov. Rendell. The bill would establish which person has priority in deciding care for a dying patient who does not have a living will or power of attorney. Oregon is the only state that has a "Death with Dignity" law, allowing individuals who have terminal illnesses and are diagnosed as being within six months of dying to choose to end their lives with a legal prescription of lethal drugs.
Guest Opinion - All Lives Are Equal Under The Law
By Steven Eidelman, Executive Director, The Arc of The United States
and Steven Drake, Research Analyst, Not Dead YetTerri Schiavo died on April 1. Her fate was a topic of intense debate for months, and it is clear now that her death will not end the dialogue. In fact, Terri Schiavo's death may propel end-of-life issues even further into public consciousness. If there is anything positive to emerge from her ordeal, perhaps it is that more Americans will consider having the difficult end-of-life conversation with all of their loved ones.
The case of Terri Schiavo raises a number of troubling questions for Americans. For people with disabilities and their families, the case represents a "slippery slope" and raises the possibility that the right to life of people with significant intellectual and/or physical disabilities might one day be questioned.
It was just 20 years ago that many of us were enmeshed in the "Baby Doe" case when the starvation and dehydration of a newborn infant with Down Syndrome exposed this all-too-common practice in the United States. In that case, two separate judges sanctioned the death of the infant, an infant whose life could have been saved without heroics. Although few would agree with those judges' rulings today, they were fiercely defended as a protecting a private matter between families and doctors back in the mid-1980s.
Today, there are thousands of people with disabilities who use feeding tubes. For them, a feeding tube is not life support or heroic intervention, but the normal way they get food and water. When they are hospitalized for any reason - however minor - they risk having their normal means of eating and drinking being classified as "extraordinary treatment" or "life support."
Few of us have enough experience with severe disability to make an informed choice in an advance directive, but clearly, having a significant disability does not mean you are "pre-dead." People with disabilities agree with the Americans with Disabilities Act - that "disability is a natural part of the human experience." Indeed, so is death.
The persistent vegetative state diagnosis is another matter, however, one fraught with unreliability. The fair and just allocation of health care and long term support resources is often in the back of our minds, whether we talk about it or not. These are ample reasons why we must put aside the partisan posturing and have an open and inclusive discussion of the issues at hand.
The disability community today is troubled by the possibility that Terri Schiavo's life - and death - may cause legal protections for people who have guardians to be dismantled, making it easier for guardians to kill by withholding food and water. There must be a way to balance a person's right to expressly refuse treatment against a person's right not to be deprived of life without due process of law. Due process of law must appreciate the wishes and interests of people with disabilities, even if their lives are devalued by other people. Today, we fear that is not the case.
Terri Schiavo's wishes were not documented, and her husband and family had many conflicts. Advocates for people with disabilities would never have wished to deprive Terri Schiavo of her right to self-determination regarding the end of her life, had her wishes been documented in a living will and/or power of attorney. But they were not.
Given these ambiguities, the disability community feels that the courts should have ruled on the side of sustaining her life, not allowing her to die. The disability community, from many years of grappling with these issues, feels that in such cases, it is best to assume that life is preferable over death. This is the position of 26 national disability groups, many of which represent people like Terri Schiavo who have guardians.
State laws governing surrogate decision-making vary and are often the result of well-funded advocacy from a narrow group of professionals, not involving the viewpoint of people with disabilities. When a guardian is needed - particularly a state-appointed guardian - the possibility for conflicts of interest is clear. Thus, the Schiavo case has focused attention on the need for a "federal floor" to protect people under guardianship.
Research indicates that people with living wills and advance directives frequently change their minds when the time comes to implement those directives. Once people experience severe disability, their sense of horror about disability usually fades. We also know that people who "cannot speak for themselves" are often able to use assistive technologies that allow them to communicate their wishes, hopes, fears, and good-byes even if they can no longer speak. In today's climate, it might be even more important to write down what you do want than what you do not want.
In addition, we must, as a society, stop using the term "persistent vegetative state." Too many people with significant disabilities have been called "vegetables," and this needs to stop. It is beyond demeaning. It is dehumanizing. In fact, some of the people who use the term most freely are doctors, and what often comes next is a discussion of the death or warehousing of the individual with such a pejorative label.
For a person with serious disabilities, the debate should not be about whether or not they are going to "get better" some day. Disability is a fact of life, every day of our lives. Millions of Americans are disabled, and for millions more, it is just a matter of time. None of us is guaranteed an able body or mind for life.
People with disabilities sometimes have wonderful lives, and sometimes they have lousy lives. They are just like other Americans. Just because a person has a significant disability does not mean that he or she does not love life. It does not mean that they should be assumed to be better off dead.
It is time for a call to conscience to both the Right and the Left. Guardianship should not be a death ship. People like Terri Schiavo, people with disabilities, are persons under the law, and they deserve constitutional protection.
The disability community is grateful that so many in Congress stepped up to support Terri Schiavo's right to live, even though we are concerned about the precedent that was established. We would like to see Congress follow up with the same level of concern in making sure we can provide care and support for the millions of Americans with disabilities by supporting Medicaid Community Attendant Services and Supports Act, legislation that would allow thousands of adults with disabilities who have Medicaid funded services to have a life in their communities, not just stay to alive in an institution. We call on the Congress to ensure continued support for Medicaid and other programs people need; and we look forward to the passage of the Family Opportunity Act, to allow families of children with significant disabilities to buy into the Medicaid program in order to help their sons and daughters live at home in the community, rather than being banished to a nursing home or institution.
Terri Schiavo's case is every family's nightmare. But disability doesn't have to be a nightmare. Even if our nation disagrees on how we define compassion, we must certainly agree that all lives are equal under the law.
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