Lifeboat' bioethicists

by Diane Coleman, President, Not Dead Yet

Presented as her opening statement in a 9-member panel debate held at Florida State University in Tallahassee on Aug. 30, 2004, the night before oral arguments were heard on the Schiavo case in the Florida Supreme Court.

I've been a health care advocate for a couple of decades, sometimes joining protests against government health cuts. One mission of the end-of-life care movement is to educate health care providers about how to provide good end-of-life care, but another mission is to shape public policy on health care. It appears that a certain line of thought in bioethics has pretty much taken over the policy-making work. This line of thought involves a lifeboat approach, deciding who gets thrown out.

The lifeboat bioethicists seem to think of themselves as progressives, but oddly they never spend much energy on ways to cut unnecessary costs before cutting lives. My sister just started a new career as a medical assistant at a practice with 25 doctors. She says that four days out of five, she doesn't have to buy lunch anymore because it's catered in by a pharmaceutical company. But rather than spending all that professional brain power on conquering the waste and inhumanity of a profit-driven health care system, these bioethicists are pushing new health care decisions laws to kill disabled people who aren't going to die soon enough without a little push.

Last year, one of the leaders of the end-of-life care movement, Dr. Ira Byock, was interviewed by Ragged Edge Magazine, a leading disability rights publication. He stated that Partnership for Caring and Last Acts, national leaders in the movement, had excluded the disability perspective, and that this exclusion was "deliberate and irresponsible." What's especially disturbing is that they have set up surrogate decision-making protocols to end the lives of people with intellectual disabilities, without seeking the input of such individuals and the established organizations that address issues of self-determination for people who have less typical ways of receiving, processing and communicating information.

What might other disability groups bring to the discussion table?

I just read a journal article about the problems with advanced directives. A consistent finding in several funded studies is that people change their minds about what treatments they want, and what level of disability they will accept, as they move through the experience of having increasing disabilities. The disability community has a response to that, to use a popular phrase, "well, DUH."

And you may have seen reports of a new Alzheimer's study in the last few weeks. It confirmed previous studies that caregivers have a lower opinion of their relative's quality of life with Alzheimer's than the persons themselves have, and found an explanation for the discrepancy. It seems that the caregivers project their own feelings of the burden of care-giving onto the person they care for. Once again, the disability community response is "well, DUH." And these are the very caregivers who make life-ending decisions.

This is our point. We have expertise to bring. But we also have an attitude about disability that diverges from the mainstream, especially the mainstream of bioethics. And, frankly, I think that's why we were deliberately excluded.

Professor Peter Singer, who holds an endowed chair in bioethics at Princeton, believes that legal personhood should be subject to a cognitive test. Those who don't pass are eligible for killing if their families prefer, or for society's greater good.

At least two of my co-panelists here are working to implement theories like Peter Singer's. In the California case of Robert Wendland, all parties admitted that Mr. Wendland was conscious, what they called "minimally" conscious, and that he had not left clear evidence of his wishes, but Dr. Cranford and Mr. Eisenberg, then representing 43 bioethicists, argued that his wife should be able to starve and dehydrate him anyway. What Dr. Cranford and Mr. Eisenberg have done, and continue to do here in the Schiavo case, is a direct assault on people with disabilities and the disability rights movement, which demands equal protection of the law, regardless of our health or disability.

Did you see last week's report of a case in which the Kentucky Supreme Court ruled that a public guardian may deprive life sustaining treatment from a man labeled mentally retarded, despite the financial conflict of interest for a state guardian of a ward on Medicaid?

Basically, the bioethicists have warped the end-of-life care movement into a life-ending movement. They've had tens of millions of dollars to work with, and they've used it to build a steamroller that's decimating the civil and constitutional rights of people in guardianship. This affects more than the disability community of today, it affects everyone, directly or through family, sooner or later. There are rules being made for who lives and who dies, but the rule-making and the medical killing are happening behind closed doors. We can't ignore it. It's time to call "time out," to go back to the table and talk about how to build a good end-of-life care system, one that respects us all. Let's do that before this goes any further.

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