From the Tiger Bay Club - Tampa, FL November 14, 2003
Opening Statement of Diane Coleman of Not Dead Yet on Terri Schiavo Case
You've been hearing for a long time that the only opposition in this case is coming from the religious right. But a dozen national disability groups filed friend of the court briefs in the state and federal proceedings, and in the last month, 25 national disability rights groups have adopted a statement in favor of feeding Terri Schiavo. Surely, it will not be argued that the National Spinal Cord Injury Association, the National Downs Syndrome Congress, the Disability Rights Education and Defense Fund and all the rest, are now or ever have been puppets of religious conservatives.
So why have all these groups come forward? Because we don't think guardians should have carte blanche to starve and dehydrate people in guardianship, people with severe brain injury, birth defects and Alzheimers. Many of us had hoped that the appellate courts would come through, uphold the limits on guardians that tens of thousands of people depend on. Unfortunately, we've been disappointed that the higher courts instead upheld a lower court judge who ignored much of the evidence and, more importantly, ignored constitutional standards for evaluating that evidence. Nor is it reassuring that the press releases, legal briefs, opinion pieces and letters issued by disability groups have pretty much been ignored in the public debate about this case, ignored by both conservatives and liberals. We applaud the Tiger Bay Club for wanting its members to consider the disability perspective.
But why should you care what we think? If you don't buy the pro-life puppets argument, then you might also hear that our concerns are at best misguided, or perhaps even paranoid. Recently, a reporter asked me if someone like me has anything in common with Terri Schiavo. I just turned 50, joined AARP, and I know I might someday get Alzheimers, or have a stroke. Temporarily or long term, any one of us might someday be unable to make and/or communicate our wishes.
If you don't have a living will or health care proxy, a guardian will be designated for you by operation of law, like in Terri Schiavo's case, and there's a hierarchy spelled out in state law. It doesn't take into account things like the Elder Abuse Incidence Study from the Administration on Aging that the overwhelming majority of elder abuse and neglect is perpetrated by the spouse or adult child, who also happen to be priority statutory guardians. You might also be interested to know that if you don't have any relatives willing or able to be your guardian, then you get a public guardian, employed by the government. And guardianship laws haven't taken into account the financial pressures, and even conflicts of interest, involved with public guardians.
If doctors don't think you're up to making your own decisions, they'll explain your condition, and tell your guardian that he or she is permitted to exercise your right to refuse treatment. This may include refusing a feeding tube if you're not in a condition to feed yourself. When it comes to feeding tubes, I need to point out a few facts. First, they were invented in the 1800's. About a month ago, the NY Times ran an article about how people with dementia were being put on feeding tubes, not because they couldn't eat orally, but because about 20% of folks in nursing homes need help to eat, and there are staffing shortages. And, according to another recent study, people with dementia get put on feeding tubes earlier in their disease process if they're African-American, in an urban setting and in a for-profit nursing home.
People hope that we can always trust the health care system and our guardians, acting in privacy, to do the right thing. Unfortunately, human nature being what it is, sometimes there are mistakes, and sometimes there are conflicts of interest. That's why there are supposed to be standards governing the behavior of doctors and guardians, and sometimes government needs to be involved to enforce those standards and let everyone know that our society doesn't approve of the medical killing of people who didn't ask for it, even if their lives are seen by some as burdensome or meaningless or costly.
The constitution requires that a guardian's decision be based on written documentation or other clear and convincing evidence of the person's wishes. The question is, how are those standards working in our health care system and our courts today?
You should think of disabled people as the canaries in the coal mine. We spend a lot of time in the health care system. Twenty- five national disability groups are coming forward because it is our lived experience that, when a surrogate exercises their right to refuse someone else's treatment, the safeguards against mistakes and abuses are not working. Behind closed doors in hospitals, hospices and nursing homes, conscious people with disabilities, old and young, are being deprived of food and water, in the absence of a living will or other clear and convincing evidence that they would choose this for themselves. This is being done based on physicians' predictions and judgments about present and future quality of life, predictions and judgments that numerous research studies prove are scientifically unreliable, negative and inconsistent with the views of people with disabilities ourselves. Disabled people also know that we can't count on the courts to protect us against a doctor or family member who feels that we would be better off dead or they would be better off without us.
Florida statutes limit a guardian's right to starve a person, but provide an exception if the person is in a persistent vegetative state (PVS). PVS is strictly defined in Florida to mean NO evidence of responsiveness. Medical journals report a 40% misdiagnosis rate for PVS. UCLA neurology professor Michael Wienir is one of many professionals who've publicly stated their opinion that Mrs. Schiavo displayed at least minimal consciousness based on the videos. Judge Greer admitted the experts were divided, but ruled that she's in PVS anyway because her responsive actions were not "consistent" or "reproducible." When he ignored Florida's strict definition of PVS, he violated Terri Schiavo's constitutional right to due process.
There's also conflicting evidence about what Mrs. Schiavo would have wanted if she were considering her situation from the vantage point she had prior to her disability. Basically, the husband's hearsay evidence only came up after he won the big malpractice case, with none of the money going to professional rehabilitation therapy like he said it would. This is not the kind of evidence of her wishes that should be considered to meet constitutional due process standards and that's what the first guardian ad litem reported. Disabled people are not comforted that the court threw out his report and accepted such flimsy and contradicted evidence to justify starvation of a disabled woman who has no terminal disease.
But what is really horrible is that the appellate courts upheld these unconstitutional decisions. Until now, courts have said that conflicting evidence and doubts should be resolved on the side of providing food and water, and other ordinary medical care. After all, if the mistake you make is to kill the person, you can't go back and fix it.
That's what this case is really about. It's one in a series of food and water cases in which certain people are saying that the risk of error should be reversed to favor death over life, so that people with significant cognitive disabilities can be starved and dehydrated without clear evidence that they themselves would refuse food and water. The leading people that are saying this call themselves bioethicists, mostly physicians and lawyers who write journal articles and speak at conferences, opining about health care rationing and the coming wave of aging baby boomers. But they talk to the press and the public about autonomy and compassion.
So why do they want to change the legal standards now? Why make it easier for guardians to refuse food and water on behalf of persons who cannot speak for themselves? In a l983 article, reflecting on the possible outcome of this food and water debate, Daniel Callahan, then director of the prestigious Hastings Center, wrote that "...a denial of nutrition, may, in the long run, become the only effective way to make certain that a large number of biologically tenacious patients actually die." 65 He further predicted, "Given the increasingly large pool of superattennuated, chronically ill, physically marginal elderly, it could well become the nontreatment of choice." [Daniel Callahan, "On Feeding the Dying," Hastings Center Report, October 1983, p. 22.]
The Schiavo case should be seen as a wake up call for all of us. This case is about officially and permanently dismantling the constitutional rights of people who have guardians and giving carte blanche to guardians to starve and dehydrate people who are seen as not worth the effort or expense. Disability rights groups are coming forward to argue that it's time to reestablish constitutional protections against a health care system that's been putting profits before people for far too long. I said that we're the canaries in the coal mine, but there's a problem with that analogy: we don't see people who need guardians as expendable. Maybe you disagree. But at least agree that we deserve an honest public debate before we grant the health care system a virtually unfettered right to kill.