Using advance directives to control what happens to us after mental incapacity, PART 3

“Over himself, over his own body and mind, the individual is sovereign.”
— John Stuart Mill

The United States Constitution and the common law (along with some state constitutions) give us the right to make directives that control the health services we receive if we become mentally incapacitated. The instructions provided by most states in the statutory forms that have been approved since the late 1980s do not limit us. We can write non-statutory directives I call “supplemental directives” when they are attached to and referenced in the statutory directives. We can also write our own health care directives without using statutory forms (an issue to be discussed in a subsequent post).

Supplemental directives intended to control what happens to us if we become mentally incapacitated usually are predicated on one or both of the concepts of dignity and suffering, and there may be some overlap. Each of us must decide what dignity and suffering mean for our lives in order to explain the purpose of such supplemental directives.

Dignity is seen by many as including retention of decision-making faculties without undue dependence on medical technology, prolonged dependence on others for personal needs, and protracted agony. Suffering may mean protracted, unresolvable agony, whether physical or psychological or both.

Over thirty years ago, the Supreme Court of New Jersey addressed the issues this way: “As scientific advances make it possible for us to live longer than ever before, even when most of our physical and mental capacities have been irrevocably lost, patients and their families are increasingly asserting a right to die a natural death without undue dependence on medical technology or unnecessarily protracted agony — in short, a right to `die with dignity.'” Matter of Conroy at 343.

The right to dignity, whatever it means to the individual, and the desire to avoid suffering are based on the right of self-determination and individual autonomy, two related concepts that have deep historical roots. John Stuart Mill provided the philosophical foundation for these concepts in Chapter I (Introductory) of his treatise On Liberty, in which he states clearly the limits of state power over the liberty of the individual. The government can control our actions to the extent necessary to prevent us from harming others, but we should enjoy autonomy with respect to our own persons, no matter what the government or anyone else thinks.

With these considerations in mind, I wrote a supplemental directive eighteen years ago. I have revised it several times as I have learned about arguments intended to weaken such directives, motivating me to seek ways to address each of them. Of special assistance to me in my latest revision has been a paper by Thaddeus Mason Pope, now a law professor at Mitchell Hamline School of Law, Saint Paul, Minnesota and a blogger at the Medical Futility Blog. The co-author is Lindsey E. Anderson, a Delaware attorney and graduate of Widener University School of Law. My references to “Pope” in this post are to this paper.

My statutory Directive to Physicians (called by various names around the country – Living Will, health care directive, or simply an advance directive; in Texas, full name is Directive to Physicians and Family or Surrogates) makes clear that should I have a terminal condition or an irreversible condition, I do not want to receive life-sustaining procedures that will serve only to prolong my dying under conditions unacceptable to me. Because I don’t live in a medical aid in dying jurisdiction, I fully intend to hasten my own death if I develop a terminal illness and experience an unacceptable loss of dignity, suffering, or anticipated suffering, and I can manage my own death without needing assistance from anyone.

If I develop a medical condition that is progressive, but not immediately life-threatening, I will have to be mindful that if I wait too long I may find myself past the time that I can hasten my own death. If I wait too long or if I develop a neurological or physical malady that prevents me from hastening my own death (a stroke or a physically-debilitating accident, for example), I have a fall-back plan that calls for voluntarily stopping eating or drinking (VSED). I first studied VSED on my own nearly two decades ago. Fortunately, today, there are many good resources available and more will be available in the near future. We plan to cover VSED in more detail in subsequent posts.

Following are some issues that I considered in writing my supplemental directive that includes a VSED component.

1. In drafting my supplemental directive, I begin by explaining my purpose for writing it. Everyone will have different reasons and different ways to explain their decision. I urge each person to put your reasons in your own words so that it is clearly your supplemental directive, though borrowing from others is appropriate if the words capture your views.

2. My hope and desire is that I will be able to hasten my own death at the time of my choosing to avoid further or anticipated suffering or unacceptable loss of dignity. The rest of my supplemental directive details what I want to happen if I am unable to do so.

3. No one who follows my directive and guidelines should be seen as assisting in my suicide. They will be carrying out my personal plan for how I should be treated for whatever condition(s) I have. We all have the right to determine our own medical care and treatment. VSED is not assisted suicide because it requires no overt action to cause the death of the person, which is the context for virtually all assisted suicide statutes. A decision for VSED requires no action by anyone else to bring about the death of the patient through deydration. As Pope (at p. 363) explains VSED, “it is simply the omission of action to reverse” the process of dehydration. See Vacco V. Quill, which found the distinction between assisted suicide and refusing medical treatment to be rational; thus refusing treatment is not assisted suicide.

4. With such a directive, it is essential to explain clearly what is meant by “normal mental functioning,” the loss of which will trigger the terms and conditions of my supplemental directive. To me, being clear means that no reasonable person should want to argue about what circumstances constitute my loss of “normal mental functioning.”

5. One of the hurdles often faced by those trying to use VSED when they are not competent and have a valid advance directive prescribing VSED is a belief by caregivers that, if a non-competent person accepts presented food, that person has revoked her directive or does not want it followed. One way to deal with that in the directive is to make plain that feeding against the explicit terms of the directive is a battery; i.e., it is nonconsensual and actionable as a tort committed against the bodily integrity of the person. It is the unwanted intrusion into another’s bodily integrity and is actionable: it is nonconsensual, harmful, or offensive contact. To be actionable, it is enough that the other person causes an object to contact another, such as a feeding implement. Pope (at p. 404) has suggested that “placing food within a person’s reach when the caregiver clearly knows that the patient is voluntarily refusing food” might constitute a battery if the purpose is to thwart the patient’s directive. The harm or offensiveness may be the interference in the VSED process, precluding the patient from avoiding suffering or unacceptable loss of dignity.

6. Another difficulty that can be encountered involves a caregiver, family member, or physician who attempts to coerce or persuade the patient to take food and liquids. A careful drafter will try to prevent such interference with explicit language aimed at prohibiting such coercion or persuasion.

7. All caregivers and those who are involved with the patient should be made aware of the exact terms of the patient’s supplemental directive so that the issue of a battery is known by anyone who attempts to feed the patient in violation of the terms of the directive. Before admission to a residential care facility (assisted living, nursing home, group home, etc.), a person’s supplemental directive that includes VSED should be included as part of the admission agreement to avoid later disagreements with the facility about VSED.

8. I consider providing nutrition and hydration to be medical treatment or care and I say so directly in my supplemental directive. Others will argue against this position, but it is my choice to determine what medical treatment and care I will receive, and I should be able to decide what is included in that definition. If my competent self can refuse a type of care for my competent self, my competent self can refuse it for my incompetent self. That is why such directives are termed advance directives. Otherwise there would be no purpose for them. Pope has cited cases in both the “hunger strike” context and in nursing homes when courts have refused to permit prisoners or patients to be force fed against their decisions. Hand feeding, while not as traumatic for the patient as intubation or intravenous delivery of hydration and nutrition can be, generally requires training and certification (in part because of the danger of aspiration), often the need for special equipment, and frequently a special diet depending on the swallowing and chewing circumstance of the patient, which places hand feeding in the medical category. In addition, it is often ordered by a physician.

9. Another hurdle to VSED, especially if the patient is in an institution, is the fear by administrators of civil, criminal, or regulatory penalties for abuse or neglect of a patient if adequate food and liquids are not provided. However, abuse and neglect depend on involuntary absence of food and liquids, not the voluntary absence as part of a deliberate plan. In the latter circumstance, the patient does not want nutrition and hydration; withholding it is legally the patient’s choice. As Pope notes, both Medicare and Medicaid requirements specifically give the patient “the right to refuse treatment.” Following a patient’s instructions about care should never be seen as abuse or neglect, but failing to follow them could be abuse.

Finally, to assure that your wishes are carried out if you become mentally incapacitated, you must have a diligent, assertive, and competent medical agent or advocate. With an appropriate advance directive and supplemental directive, your agent’s task is to see that your decisions are implemented. We plan to discuss choosing a medical agent in subsequent posts.

In Part 4, the last of this series, I will provide my own supplemental directive to show how I have tried to resolve the issues discussed above. I will welcome ideas, critiques, and comments to improve my efforts.