How well do the courts honor the wishes of incapacitated persons?

There was a terrific article in yesterday’s Boston Globe (warning – pay wall unless you’re a Boston Globe subscriber) concerning to what extent the wishes of legally incapacitated persons concerning extraordinary medical treatment are actually honored. Extraordinary medical treatment includes such matters as end-of-life decisions, use of antipsychotic medication,sterilization and abortion, and so forth.

This issue has been of great interest to me since law school. Massachusetts is one of the few states where such decisions are left in the hands of judges, who must decide whether the treatment is something that the incapacitated person would want if competent — in most states, the decision may be left to the guardian, who decides whether the treatment is in the incapacitated person’s best interest. One of the first Massachusetts cases on point is the Saikewicz matter. This case from the early 1970’s involved a profoundly developmentally disabled 67 year old man who suffered from leukemia. The argument over whether he should receive chemotherapy which, at best, would only briefly extend his life at the cost of considerable side effects. The trial judge, after weighing the pluses and minuses (including the extent to which side effects can be managed, the low rate of remission, the patient’s inability to cooperate with treatment, and the anticipated likelihood of death without treatment), determined that treatment should be withheld because it would not be in Mr. Saikewicz’s best interest.

The Supreme Judicial Court took a different tack. While adopting the factual findings of the trial judge,  the SJC looked at Mr. Saikewicz’s right to privacy balanced against the state interest in preserving life given the facts.

“The interest of the State in prolonging a life must be reconciled with the interest of an individual to reject the traumatic cost of that prolongation. There is a substantial distinction in the State’s insistence that human life be saved where the affliction is curable, as opposed to the State interest where, as here, the issue is not whether, but when, for how long, and at what cost to the individual that life may be briefly extended. Even if we assume that the State has an additional interest in seeing to it that individual decisions on the prolongation of life do not in any way tend to “cheapen” the value which is placed in the concept of living, see Roe v. Wade, supra, we believe it is not inconsistent to recognize a right to decline medical treatment in a situation of incurable illness. The constitutional right to privacy, as we conceive it, is an expression of the sanctity of individual free choice and self-determination as fundamental constituents of life. The value of life as so perceived is lessened not by a decision to refuse treatment, but by the failure to allow a competent human being the right of choice.”

Over time, this doctrine was extended past end-of-life decision-making to other types of medical treatment. The role of the guardian in Massachusetts is to carry out the medical wishes of the incapacitated person to the extent they are known; and after that do one’s best to infer what they might be. For certain types of treatment, a judge must weigh in.

Next Post — the present problem with ensuring the substituted judgment standard is used.

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