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Estates & Trusts

Health Care Declarations and End-of-Life Decision Making

by Elizabeth G. Clark

Advances in medical science, particularly within the past 10 to 15 years, make it possible for a person’s life to be extended artificially past the time he or she would have previously died naturally. In some cases, however, the quality of that life may be such that the person is no longer able to participate in it in any volitional way or even be aware of what is going on around him or her.

As a result, a body of law has developed, based on prior law acknowledging the right of each individual to control his or her own body and to determine the kind of care he or she will receive, that creates a process by which medical decisions can be made for a person unable to do so for himself or herself.

The highly publicized Terry Schiavo case reminded us all of the importance of thinking about the kind of care we would—and, perhaps most importantly, would not—want if we became unable to make our own decisions or communicate our desires about treatment and if our life could be maintained only with the use of some sort of artificial means or medication. This article will review the basic elements required to help insure that someone may know what we would want in that situation and that there will be someone with the authority to make any necessary decisions and to communicate the required information. This article is important only for those who can conceive of a situation in which he or she would not want to be kept alive by some artificial means.

Medical decision making (and, in particular, that related to end-of-life decisions) is governed by both federal and state law. The governing federal case at this time, Cruzan v. Director, Missouri Department of Health, dates from 1990. In that case, the United States Supreme Court held that each individual has a liberty interest under the due process clause in refusing unwanted medical treatment and a right to refuse treatment based on the common-law right of informed consent or the constitutional right of privacy. The holding also recognized that an incompetent person should possess the same right as one who is competent, noting that under certain circumstances a surrogate may act for the patient in electing to withhold or withdraw treatment (including artificial nutrition and hydration) and that states could establish a procedural safeguard to assure that the surrogate’s action conforms as best it may to the wishes expressed by the patient while competent.

The Cruzan case further held that the “clear and convincing” standard established by Missouri (the state at issue in that case) was an appropriate way for a state to satisfy its interest in the protection and preservation of human life and to safeguard against potential abuses by a surrogate who may not act to protect the patient. Finally, the court noted that the due process clause does not require a state to accept the “substituted judgment” of close family members in the absence of substantial proof that their views reflect the patient’s.

In the years since Cruzan, every state in the United States has passed legislation regarding health care decision making and recognized the right of an individual to refuse treatment, even if such refusal would result in his or her death. Each state may also set other requirements (such as that an incompetent individual must have been determined to be terminal before treatment can be withheld or withdrawn, as is required by Florida law). In addition, each state has established a procedure for the appointment of an agent, often called a surrogate or proxy, with the authority to make decisions for an individual unable to speak for himself or herself. Although state requirements vary, the basic principles are generally similar, and each state law contains a provision by which it agrees that a health care declaration that was executed in accordance with the laws of another state will be recognized and honored.

Although the existence of a written document stating an individual’s wishes about treatment and the appointment of an agent to make decisions is clearly preferable, as will be discussed below, it is not required so long as there are individuals who, from personal knowledge, can provide the clear and convincing evidence required by the Cruzan case or such other level of evidence established by the applicable law of the state in which an individual is being treated. The existence of a written document signed by the individual at a time when he or she had the capacity to make medical decisions, however, is far superior because it can eliminate or at least greatly reduce the chance of others to claim a contrary intent on the part of the individual receiving treatment. It also eliminates the possibility that the people to whom the individual expressed his or her desires will have misunderstood or forgotten them—or that they will not be alive or otherwise available at the time a decision needs to be made.

In the case of Nancy Cruzan, for example, there was no written document in which she had expressed her wishes, but her parents, who had requested the withdrawal of artificial nutrition and hydration after it had been determined that she had “virtually no chance of regaining her mental faculties,” submitted evidence of what she had previously said to them that she would want in such a situation. They were also able to locate college friends who remembered similar discussions and were able to corroborate her expressed desires. It should be noted that Nancy Cruzan was a young woman in her early 30s who had been injured in an automobile accident seven years earlier. The court noted that she had suffered a lack of oxygen to her brain for an estimated 12 to 14 minutes, which placed her in a persistent vegetative state. She exhibited motor reflexes but showed no indication of significant cognitive function. Once the required evidence of her desires had been submitted, the feeding tube was permitted to be removed, and she subsequently died.

As a result, the best advice is for an individual to put his or her desires regarding treatment in writing in a document commonly called a health care declaration or advanced directive. That form can include both the expression of desires (the “living will” part) and the appointment of one or more people to act as an agent (the proxy, surrogate, or health care power of attorney part), or the two parts can be done as two separate documents.

The “living will” part must clearly indicate the general kinds of treatment the individual would not want and the general situation under which such treatment would not be desired. There is no required form in any state of which I am aware and no need to try to list specific diseases, incidents, etc., or specific treatments (such as dialysis, respirator, installation of a pacemaker, etc.) as no such lists could ever include every possibility that might occur. Rather, a general listing that makes it clear that, regardless of the cause of the individual’s lack of capacity, if there is no reasonable likelihood that he or she will be able to make his or her own decisions in the future, no medical treatment is desired if it would only prolong the individual’s life without the potential for correcting or curing the underlying problem and restoring the individual to a desired quality of life, is preferable. In some states, however, specific reference must be made to include artificial nutrition and hydration in the class of undesired medical treatment.

The statement regarding the condition in which one would not desire treatment should be quite specific. In the early forms of living wills, the term “meaningful” was commonly used but, because that term can mean different things to different people, it proved not to be helpful. In the form I developed for use at Hodgson Russ, I have defined the triggering condition as when there is “no reasonable prospect of regaining a cognitive and sentient life.”

Because “cognitive” and “sentient” are less abstract terms, they are more likely to mean the same thing to everyone, and they also relate to the one state of being that most people see as basic, the absence of which would be unacceptable. A person who is mentally able to make his or her own decisions is “cognitive and sentient” and could decide for himself or herself regarding continuance or institution of treatment. Only if he or she had signed a health care declaration (or left oral evidence of his or her desires) and was not anticipated to ever become cognitive or sentient again would an agent be able to withhold or terminate treatment. Obviously, anyone who would desire a different triggering condition can specify such in his or her form.

The one requirement for most states, including Florida, is that a health care declaration be signed by the individual in the presence of two witnesses, neither of whom is named as an agent and (although not all states require this) neither of whom will potentially inherit from the individual on his or her death. The form does not have to be notarized, but in some states that is permitted as an alternative to having two witnesses. Forms are commonly available online or through various agencies such as Compassion in Dying, although it is often advisable to discuss one’s desires with the attorney who handles his or her estate planning and other personal matters to increase the likelihood that they are expressed in a way that may help achieve the individual’s goals.

In addition, it is very important that anyone who wishes to insure that unwanted treatment will not be provided discuss his or her desires with the individuals to be named as agents on his or her health care declaration and with the other family members or friends who might be involved at the time a decision had to be made. That discussion is important for several reasons. First, the individual ought to be sure that the named agent(s) are willing to act and to make the decisions the individual would want. Second, the fact that all of those people will have been told the individual’s desires should help to eliminate possible disagreement at the time of a decision. Third, the individual would become aware of family members who disagreed with his or her desires and might not be willing to follow them. In that situation, such people should not be named as agents, and it would make sense for the individual to document the fact that he or she is aware that those people do not feel the same way that he or she does and that the individual wants his or her desires, and not those of such other people, to be followed. Finally, a copy of the health care declaration should be given to all of the named agents, to other desired family members or friends, to the individual’s doctor, and to his or her minister, rabbi, priest, or other religious advisor.

Robert A. Milch, M.D., medical director of the Center for Hospice and Palliative Care in Buffalo, New York, wrote several years ago in a local newspaper:

“The unspoken challenge is for the rest of us to exercise this right wisely; to consider what our goals of care would be under certain circumstances; to decide what limitations we would want on therapies; to articulate our values and sense of quality of life to our loved ones and physicians; to put this in writing as a health care [declaration; and] to do this before some stranger approaches at the worst possible time to propose [a termination of treatment]. Doing this now improves immeasurably our chances of avoiding the scenario of graceless dying, spares our families unnecessary anguish and eloquently affirms that the enemy isn’t death, but the inhumanity produced with the best of intentions.”

These words—coupled with the drama that unfolded for the Schiavo family on television and in the news—underscore the importance of understanding the law and making sure that our health care intentions are known and documented.