Using advance directives to control what happens to us after mental incapacity, PART 2

In Part 1 of this essay, I introduced two competing arguments concerning using advance directives to control what is done to our bodies should we become mentally incompetent.

As explained previously, the sole purpose of advance directives is to record one’s decisions about medical and related care if a person becomes unable to make such decisions later because of mental incapacity. To explain the range of options that are available both before and after such incapacity, I’ll use a personal example.

When my father was about 12 years past an initial diagnosis of Alzheimer’s, he did not know where he was or who I was, and he could not remember that my mother had recently died after their marriage of almost sixty years. Yet, he was as content by all appearances as a person can be. He willingly consented to others giving him showers and attending to his toileting needs. He was friendly to everyone and delighted to see visitors. He fed himself when food was presented to him and especially enjoyed ice cream and pecan pie, lifelong favorites. Until two weeks before he died, he would often manage to match the ends of dominoes correctly, whether by happenstance or intention. He was bedridden for only two days before he died, fifteen years after being diagnosed.

Had my father known about Hemlock’s Caring Friends program before his Alzheimer’s developed to the point that he was no longer mentally competent, he could have chosen to hasten his death with a barbiturate cocktail, or later, after such drugs became difficult to obtain, using inert gas. Now, of course, the Final Exit Network has assumed the place vacated by Hemlock when it was merged into another organization, and FEN, through its Exit Guide program, now teaches and trains program participants about how to hasten their death to relieve unwanted suffering or unacceptable loss of dignity.

A second method my father could have chosen before he became mentally incompetent was to have prescribed for himself a regimen of withdrawal of nutrition and hydration concomitant with adequate palliative care and oral care. [The strengths and weaknesses of this method – voluntarily stopping eating and drinking (VSED) – will be discussed in subsequent posts.] He did not do so, in part because he had not encountered the idea that he could control his life and death to this extent, though he did have a standard Texas Directive to Physicians and Medical Power of Attorney.

But even if he had known of such choices, he is not likely to have made this choice because of who he was. And I don’t begrudge his choices in any way – not all people live to be 94 with such grace and good fortune as my father did, especially when they have Alzheimer’s.

A third method of hastening one’s death is to choose in an advance directive to refuse all major life-sustaining medical treatments after one has become incompetent. This lacks the control of the first two methods and will work only if a person develops a serious medical condition, such as heart disease, cancer, liver failure, kidney disease, etc. It would not be my choice to linger interminably in a demented state while my medical agent and my family wait for a fatal-if-untreated medical problem to develop. But others will find this an acceptable method of hastening death, even if its use is uncertain.

A fourth method of hastening one’s death is related to this last method. In an advance directive, a person can refuse not only major medical interventions, but also simple, routine life-sustaining measures, such as antibiotics and heart medication, as well as artificial nutrition and hydration if one becomes unable to eat normally. This method anticipates that infections will occur or pneumonia will develop and be untreated, or if one has a heart condition, for example, forgoing heart medication may precipitate a fatal heart attack. With effective palliative care, a person could die without unacceptable pain. But again, the method may be uncertain and depends on an existing serious medical problem or developing a common medical condition that could be readily treated in the absence of directives to the contrary.

Had my father executed orders to receive no antibiotics, for instance, we would not have had a urinary tract infection treated and he might have died a painful death, if the pain could not have been ameliorated through palliative care. Even with an advance directive delineating such a course, it would have been difficult to see such a pleasant, apparently happy person die in such a way, though, as his medical agent I would have had the duty to see that his wishes were faithfully carried out if he had made such a choice.

As Norman Cantor has explained, American law supports the efforts of competent persons to control the medical fate of their subsequent incompetent selves.  Starting with the Quinlan case in 1976, the courts have established a fundamental right of competent persons to reject (or accept) life-sustaining medical interventions.  This right is based on self-determination and bodily integrity (the interest in being free from nonconsensual invasion of one’s body), and various courts have found support for this right in the common law, state constitutional provisions, the liberty clause of the 14th Amendment of the US Constitution, and the right to privacy (seen by some as a right that arises out of other enumerated rights).

And these courts have readily held that a competent person’s right to control medical intervention is not lost by onset of incompetency.  If the now-incompetent patient has made known clear preferences regarding post-competence medical care, those preferences will control the medical care she should receive.

In fact, the court in the Cruzan case required proof of what Nancy Cruzan’s wishes were should she lapse into the persistent vegetative state (PVS) she was then in. That proof was then provided in a Missouri probate court through testimony by her family and friends that she had stated to them that under such circumstances she would not want to continue receiving life-sustaining medical treatment (a gastrostomy or feeding tube in this case). Based on this evidence, the (probate) court, using the “clear and convincing evidence” standard announced by the Missouri Supreme Court and accepted by the United States Supreme Court, approved allowing her gastrostomy tube to be removed.

Leaving clear written instructions about how one wants one’s non-competent self to be treated far exceeds the “clear and convincing evidence” standard. If a person has this concern, the time to put directives and preferences in writing is now. Relying on the future testimony of friends and family assures that the matter will be in litigation, while a clear statement of directives and preferences has a chance to prevail without court intervention. And note that both Karen Ann Quinlan and Nancy Cruzan were in their 20s at the onset of their problems, demonstrating that even young people should have advance directives.

There is further support for advance decision-making when a person becomes mentally incapacitated. As Norman Cantor has argued, the “widely prevalent legal standard for surrogate medical decision-making – substituted judgment – dictates adherence to prior instructions and thus secures for an incompetent patient,” as explained in the Brophy decision, “the same panoply of rights and choices” as competent persons have.

Moreover, as noted by Cantor, the AMA Principles of Medical Ethics opinions support “upholding a now-incompetent patient’s prior treatment choices even in the face of a physician’s differing value judgment about remaining quality of life.” An advance instruction withholding life-sustaining medical intervention from a non-suffering demented person is both lawful and ethical.

In Part 3, I will discuss some issues to consider when writing advance directives to control how we may be treated after losing mental capacity.