HEALTH :: OCTOBER 06, 2004

In an earlier column, I made a proposal that grew out of a conference we held at MSU about disability concerns and bioethics. I suggested that the State of Michigan needed to apologize for the many citizens who were involuntarily sterilized for eugenic reasons in state institutions between the 1930s and 1970s.

At the end of that column I hinted that I had my own personal apology to offer, as a result of the discussions at that conference. Here goes.

I wish now to apologize publicly for the teaching and writing I did around some cases that involved persons with disabilities who requested the “right to die” by refusing life-sustaining therapy. There were a number of such cases, most notably that of Elizabeth Bouvia in Riverside, CA, a sufferer from cerebral palsy who wished to starve herself to death. But to bring things home again to Michigan, I will use as an example the case of David Rivlin.

Rivlin was paralyzed in all four limbs and could not breathe on his own without the assistance of a ventilator. In the 1980s he was living in a nursing home near Detroit. He appealed to a county court to be allowed to die by having the ventilator disconnected. A psychiatrist judged him to be mentally competent to make such decisions. In keeping with the relatively new legal doctrine that competent patients had the right to refuse life-prolonging medical therapy, the judge ordered that Rivlin’s wishes could be carried out.

It was somewhat exciting for those of us working on bioethics in Michigan to have our own court decision, to follow in the footsteps of more famous decisions like the Quinlan ruling in New Jersey. Many physicians in that day refused to accept the patient’s right to refuse therapy and continued to insist that they could impose treatment on unwilling, dying patients, because doing anything else was tantamount to killing. I thought myself a champion of patient’s rights by agreeing with the decision of the county court in Rivlin’s case.

At the time of the Rivlin ruling, a few advocates for persons with disabilities complained about the decision, because Rivlin had never really talked with them to learn what other possibilities besides death and staying in a nursing home existed for a quadriplegic person on a ventilator. At the time I wondered who those busybodies thought they were. Rivlin had not asked for their help. Why were they sticking their noses into his very private and personal decision?

I am now embarrassed to realize how limited was the basis on which I made my decisions about David Rivlin. In hindsight, it has been very well documented that there was no medical need for Rivlin to be effectively incarcerated in a nursing home. If Rivlin had been given access to a reasonable amount of community resources, of the sort that other persons with disabilities were making use of at the time, he could have been moved out of the nursing home and probably could have had his own apartment. He could have been much more able to see friends, get outside a bit, and generally have a much more interesting and stimulating life. The reasons he gave for wanting to die were precisely how boring and meaningless life was for him.

This is the key lesson that disabilities advocates are trying to teach the rest of us. If we look at a case one way, it seems that the problem is the person’s physical disability. If we shift our view, we realize that the problem is not the disability, but rather the refusal of society to make reasonable and not terribly expensive accommodations to it.

There’s every reason to believe in hindsight that David Rivlin died unnecessarily, and that we who claimed to care about his “rights” should have been demanding that services be made available for him rather than that he be allowed to die. As one who argued the wrong thing back then, I apologize for my shortsightedness.