Winter, 2001
By Leslie Pickering Francis, PhD, JD
Alfred C. Emery Professor of Law
Professor of Philosophy
University of Utah, Salt Lake City
In decision making for patients with dementia, law and bioethics recognize two central goals: protecting the patient's autonomy and protecting the patient's best interests. These two objectives are not always consistent, however, nor easily applied over the long, downhill course experienced by most patients with dementia.
The case of Edna MF, decided by the Wisconsin Supreme Court in 1997 1 is one example. Edna MF was a 71-year-old woman with Alzheimer's disease who had been tube fed since 1988. Bedridden, with contracted and immobile limbs, she was described as alert at times, but without purposeful responses to stimuli or the capacity to interact with her surroundings. In 1994 her sister, as court-appointed guardian, sought removal of the feeding tube; the nursing home ethics committee agreed, but a niece objected. Edna's sister, with the support of an additional guardian ad litem, sought a court order to discontinue the feeding tube, citing Edna's statement in 1967 that "I would rather die of cancer than lose my mind."
The trial court refused the order and the Wisconsin Supreme Court agreed, requiring clear and convincing evidence of the patient's wishes for life-sustaining treatment to be discontinued for a patient not in a persistent vegetative state. The Court further contended that "as a matter of law" it could not be in the incompetent patient's best interests to have the feeding tube withdrawn without clear advance indication of his/her wishes.
This decision is deeply problematic. It fails to respect what is known about Edna MF's values. It ignores the views of her guardian and guardian ad litem and turns what should be an empirically-grounded judgment about interests into a legal rule. Indeed, given her inability to interact with her surroundings, examination of the facts might question whether continued tube feeding was in her best interests. The court's only justification was the assumption that a decision to withdraw life-sustaining treatment is irrevocable. Its clear and convincing evidence standard has not been adopted by most states - although the Edna MF decision is being employed by right-to-life advocates in other states - but the many legal breakdowns the case illustrates are not unusual.
First, Edna MF was a patient without a formal advance directive. The evidence about her wishes was 30 years old and not aimed at her current circumstances. Second, Edna MF had not selected her own proxy. Third, Wisconsin remains among the clear minority of states without a statute authorizing a prioritized list of surrogates to make healthcare decisions for incapacitated patients. Finally, the Wisconsin court confused judgments of law and fact, and judgments about a patient's interests and wishes. As a result, the court never examined whether continuing care was in Edna MF's interests.
Despite such legal breakdowns, in many states the law affords more methods than are generally recognized to avoid a situation such as Edna MF's. Physicians caring for patients with dementia might want to be alert to some of these possibilities. Most importantly, patients with dementia may retain the capacity to exercise some legal powers on their own, even when they have lost capacity for others. Judgments about capacity should be decision specific, inquiring whether there is sufficient understanding for a decision to be genuine and whether it furthers autonomy. Typically, the abilities required include basic understanding of the choice to be made, the available alternatives and their likely results, a sense of values, and capacity to process information to further those values.
As patients with dementia lose memory and cognitive skills, complex choices about medical decisions may prove too difficult. They may, however, retain sufficient understanding to appoint a proxy to make their healthcare decisions. Patients who can still recognize family members, on whom they know they want to rely, may have this capacity, even if shortterm memory has faded and conversations are forgotten day to day. The analogy is to capacity to make a real will and, as with real wills, it is important to have assurance that the patient is not subject to undue influence or abuse in creating a special power of attorney.
Because surrogate decision makers with special powers of attorney can respond to changed circumstances, they are preferable to living wills as advance decision making devices. They are especially important in Massachusetts, one of three states without living will legislation. Moreover, patients with dementia, even in relatively advanced stages, are unlikely to meet the terminal illness or persistent coma triggering requirements for the applicability of living wills in many states, including Vermont and New Hampshire. Finally, as the patient's chosen decision maker, special powers of attorney also bear the imprimatur of the patient's choice - at least of the decision- maker if not of the choice itself.
Another important legal tool is the statutory authorization of surrogate decision makers. Such lists clarify who is to speak for the patient, beginning with the appointed guardian and assuming as default family members in the order of consanguinity. Some states also authorize a variety of other surrogates, including close friends. The idea of these statutes is to approximate the patient's own choices. Surrogacy statutes typically provide that decisions should be made in accord with the patient's wishes to the extent known, or in accord with the patient's best interests. Had Wisconsin had such a statute, the authority of Edna MF's sister, as both guardian and closest available relative, would have been established.
Finally, advance directive statutes add to, rather than undermine, patients' rights to determine care. The presumption that life-sustaining care should be continued when a patient does not have an advance directive - a presumption approached by the Wisconsin Court, at least for a patient not in a persistent vegetative state - is simply false. On the substituted judgment standard, surrogates should make decisions in accord with what is known about the patient's wishes or, in the absence of reliable information, in accord with the patient's interests. Physicians' discussions with patients about their wishes or preferred surrogates may be a helpful source of information.
On the other hand, resort to the courts may be necessary to identify a decision maker with formal legal power to speak for the patient when no advance directive is applicable and there are disputes about the patient's wishes or interests. It should also be considered when there is doubt about the validity of an advance directive. (Whether it was procured under undue pressure or where elder abuse is suspected, for example.) Some of the many state statutes guiding substitute decision makers to act in accord with the patient's known preferences or best interests provide for adjudication when a surrogate appears to be violating these standards.
1 (563 N.W. 2d 485 (Wis. 1997)).
in collaboration with
Dartmouth-Hitchcock Medical Center
The opinions expressed in the journal, Lahey Clinic Medical Ethics,
belong to the individual contributors and do not represent the institutional position
of Lahey Clinic on any subject matters discussed.
