Using advance directives to control what happens to us after mental incapacity, PART 1

With this post, I begin a multi-part series that suggests how one might use advance directives to hasten one’s death to avoid inevitable, intractable suffering or an unacceptable loss of dignity, when the option of direct self-deliverance is unavailable or unwanted.

In all US states, an individual may end his or her own life. No law prohibits this. Thus, mentally competent adults, if faced with unacceptable suffering or loss of dignity, may choose to hasten their own deaths. The Final Exit Society (FEN) supports this right, but neither encourages nor discourages this choice. FEN educates and trains people who do choose to exercise this right about painless methods to hasten their deaths, if they satisfy FEN’s criteria for acceptance in its Exit Guide program.

Another, more common way to control suffering, medical care, and other legal and quasi-legal matters at the end of life is through the use of advance directives – literally, directives made in advance of the need for them. (Some states define “advance directives” to mean only healthcare directives, but I am using the term in its broader meaning.) People use advance directives routinely in most states to control what happens, after they become mentally incapacitated or die, to their bodies, their property, and their minor children or wards.

In the late 1980s, a series of court cases established that medical treatment after mental incapacity could be decided by evidence of what the incapacitated person would want. Many states then adopted healthcare advance directives to be used by individuals to record directions regarding wanted and unwanted medical treatment in the event a person becomes unable to make medical decisions.

The early advance directives were used to indicate a person’s views on medical treatments, especially for terminal or irreversible conditions, and permitted individuals to name substitute decision-makers (medical agents) if they became unable to make medical decisions for themselves, often providing specific restrictions on what medical agents could or could not decide.

As this use of advance healthcare directives became embedded in the medical system (partly through the Patient Self-Determination Act of 1990), new uses for such advance directives were imagined to solve other problems, while some other after-competency or after-death matters had already been addressed by legislators, who provided the means to make those decisions effective.

In recent years, commentators such as Thaddeus Pope and Norman Cantor have argued that there is no good public policy reason to prevent a person, who becomes mentally incapacitated by dementia or another neurological condition (such as stroke), from providing in advance that “normally-administered” nutrition and hydration be withheld so that she will not linger for months or years in an unwanted condition. (There is no legal impediment to refusing “artificially-administered” nutrition and hydration.) After all, if a mentally competent person can make such a decision for herself, she should be allowed to make the same decision for her future incompetent self. By extension, a person should be able, also, to give that same authority to a medical agent.

As Harvard Law Professor Emeritus Cantor has observed  “the central function of an advance directive” is to empower “a competent person to shape the medical fate of their future demented persona according to personal values and visions of intolerable indignity.” I would suggest that unacceptable suffering or anticipated suffering could fit within the concept of indignity.

To date, however, no US courts have definitively ruled on whether a person might decide in advance to withhold “normally-administered” nutrition and hydration from the person’s future demented self or whether a medical agent may be given such authority. In the absence of clear legal authority (we have no legislation or court decisions that tell us definitively that this course of action is viable), all commentators can do is suggest arguments to support or reject such a right. Because this approach is not well-established in law, there is always a risk that a family member, friend, or institution might challenge the right of a person to choose this course of action for his or her future demented self.

The most prominent argument supporting advance medical decision-making to control withdrawal of “normally-administered” nutrition and hydration after a person loses mental capacity focuses on the important decisions that many states or court decisions already allow a person to make in advance of death or loss of mental capacity. The examples are extensive:

• We can distribute property by wills.
• We can name guardians for underage children in wills or other legal instruments.
• We can decide who will be allowed to make body disposition decisions (funeral, cremation, etc.) for us.
• We can approve our own cremation or body disposition in advance.
• We can contract for our preferred body disposition and cemetery space in advance.
• We can decide to give our bodies for medical or forensic education or research.
• We can arrange for tissue and organ donation.
• We can refuse artificially-administered nutrition and hydration.
• We can decline prescribed medical treatments.
• We can name someone to make medical decisions for us.
• We can put another person in charge of our money.
• We can name a trustee to take care of our assets.
• We can name who we would want to be our guardian if we should need one.
• We can name who we would prohibit from serving as our guardian.
• We can name beneficiaries of life insurance, annuities, and IRAs.
• We can have our physician prescribe or prohibit specified medical treatments in advance through Physician’s Orders for Life-Sustaining Treatment (POLSTs), Medical Orders for Life-Sustaining Treatment (MOLSTs), and Do Not Resuscitate (DNR) orders.
• We can deed real property to another, with title transferring only upon our deaths.
• We can establish “Totten trusts,” or “payable on death” accounts, special bank accounts that can be used by another named person to pay funeral and other immediate expenses after our death.

So we are left with the question, “Why can’t I decide now, while I am competent, what I will allow to be done to my body if I become incompetent?”

Opponents of such an arrangement argue that we may turn out to be completely content if we are stricken with dementia, suggesting that our incompetent self may not want to die. Of course, this assumes that our incompetent self can decide such matters or appreciate the significance of death or of continuing to live in a demented condition. If so, why would that self be deemed incompetent?

In Part 2, I will discuss options that we all presumptively have to control the ending of our lives.