CONTINUING LIFE SUPPORT: WHO DECIDES?
American Bar Association President Philip S. Anderson
Last month in Virginia, the tragic case of Hugh Finn came to an end with his death in a nursing home. Finn had been hospitalized since 1995, the victim of a car accident that left him in a permanent vegetative state. The case made headlines when Finn's wife, Michele, requested that life support be suspended. Others in Finn's family disagreed, and interest groups from all political, religious and social perspectives weighed in on the debate. How did this private matter become such a public concern?
Matters of life and death often provoke heated debate, and many times involve questions we wish we wouldn't have to consider. No one wants to be responsible for determining the wishes of a loved one who can no longer speak for himself. But, surprisingly, fewer than 20 percent of Americans actually have planned for these decisions by making their wishes known through advance health care directives. The result, when these cases arise, is often confusion and chaos at best - dispute and acrimony in the worst cases.
Advance directives are essential to providing clear health care instruction in cases like Hugh Finn's. Living wills and powers of attorney should be set in writing to avoid questions when life and death decisions, however onerous, are required. States should make it easy to create valid advance directive documents; but some seem to go out of their way to make it difficult. They try to prevent abuse by mandating the use of specific forms, word-for-word language, or overly complicated witnessing requirements. Unfortunately, that may be one reason why many Americans don't complete directives at all - the rigid legal requirements get in the way of individualized expression. Another reason surely is that most Americans just don't know what to do.
A group in Florida, Aging with Dignity, has developed a form to address statutory requirements in as many states as possible. Its "Five Wishes" document is represented as being statutorily valid in 33 states and the District of Columbia, and is available free of charge online at www.agingwithdignity.org. Efforts like this are needed and welcome.
What is also needed is an effort by the states to streamline documentation requirements so that providing advance directives is not cumbersome or bureaucratic, and so that people are assured their wishes cannot successfully be challenged. Legislatures should consider adopting the Uniform Health-Care Decisions Act, a legislative model that promotes this goal. Under the Uniform Act, Five Wishes and other nationally available advance directives would be perfectly valid. The American Bar Association, along with the American Medical Association and the American Association of Retired Persons, offers a joint directive form, available at www.abanet.org/elderly. Another, The Medical Directive, is available through the General Internal Medicine Unit at Massachusetts General Hospital, 32 Fruit Street, Boston, Mass. 02114. The common denominator of all directives should be a universal recognition that it is enforceable if it represents the wishes of the patient -- not whether the patient has dotted all his i's or crossed his t's in conformance with an unnecessarily cumbersome statutory form.
Questions of how we die are never pleasant to deal with, but, as in the Finn case, they may become paramount when issues of medical care arise. One underlying legal principle should be adopted to apply everywhere: the patient has the right to have his expressed wishes followed when it comes to refusing or consenting to life-sustaining treatment.