HEALTH - NOVEMBER 5, 2003

Protecting yourself from becoming an unconscious court dispute

“I thought they had figured this out 20 years ago,” was how one of my physician colleagues responded to the case of Terri Schiavo in Florida. Schiavo, then 26 years old, suffered a heart attack in 1990 that left her brain oxygen-starved. She entered a persistent vegetative state — a condition in which most neurologists believe one has no awareness of what is going on in the world or any ability to respond to other people, even though one’s eyes may move around in random fashion.

Schiavo’s husband said that his wife had previously expressed wishes not to be kept alive in such a state and sought to remove the feeding tube that was maintaining her. Her parents, fundamentalist Christians, insisted that she be kept alive. They made a video in which they claimed you could see signs of Terri’s responding to them and to objects in the environment – movements which neurologists regard as purely random. Schiavo finally won a court order and the feeding tube was removed, only to be reinserted days later when the Florida legislature passed a special law empowering Gov. Jeb Bush to overrule the court. As I write, Schiavo has announced his intention to appeal, but no further action has been taken.

One could address the Schiavo case as an ethical, legal, or political issue. Ethically, the situation is as my colleague stated. We figured out many years ago that the best way to make decisions on behalf of a person in Schiavo’s predicament is to let the closest relatives decide, and in the event of disagreement one’s spouse is considered to have the final say. The decision should track as closely as possible the patient’s own known wishes. Ideally the courts would stay out of it, intervening only if there is a serious dispute, as happened here. In no case does the legislature or the governor have any business weighing in.

I’ll try to resist the temptation to say as much as I could about this tragic situation and instead turn to one practical point. How can we folks in Michigan best protect ourselves from ending up like Terri Schiavo – assuming that we would not wish to be kept alive in such a state? (Most polls show that about 90 percent of us would not want to be kept alive and about 10 percent would.)

The Michigan situation is somewhat clouded by a 1995 state Supreme Court ruling in the Martin case. Michael Martin’s wife, Mary, had sought court approval to discontinue her husband’s feeding tube over the objection of other family members. Martin was not in a persistent vegetative state; he was severely brain damaged and could not recognize family members, but could respond to simple commands and could enjoy simple activities. He had insisted to his wife that he would never want to be maintained on life support if he were “like a vegetable.” To Mary this was a non-technical expression of a wish not to live like he was now living. The Michigan Supreme Court, among other things, chose to interpret it as a technical reference to a persistent vegetative state, and ruled that since Martin was not in that state, we did not know what his wishes would be. The court ruled the feeding tube had to stay in.

Schiavo, like many women in their 20s and like perhaps 80 percent of the general population, did not have a written advance directive – a statement of what you want done, or who you want to decide, about your medical care if you later cannot speak for yourself. In both the Martin and Schiavo cases, the lack of an advance directive worked indirectly to support the case for continuing treatment which, to the best of our knowledge, the person would not have wanted.

An advance directive can be a living will (in which you say what you would want in a variety of circumstances) or a durable power of attorney for health care (in which you say who should choose on your behalf) or both. The preferred form is both. Michigan has a form that is designated by statute and can be obtained from most physicians, hospitals, or state legislators’ offices. On the form you can say: 1) whom you most trust to make the decision for you if you cannot make it yourself; 2) whether you’d want to be kept alive by artificial means if you are in a persistent vegetative state like Schiavo; and 3) whether you’d want to be kept alive by artificial means if you are severely brain damaged like Martin. I’d recommend that you spell out the second and third points in detail in your advance directive. When you are dealing with dim bulbs such as the Florida legislature and governor, you can’t make your meaning too clear.

Dave Dempsey is the policy adviser for the Michigan Environmental Council, a coalition of environmental organizations. His column appears biweekly.

Care to respond? Send letters to letters@lansingcitypulse.com. View our Letters policy.