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Living Wills: They Were a Good Idea, Weren’t They?
This article is part of a continuing series in the Journal on information outside of the mainstream, with this one of particular interest to long-term care providers.
A recent President’s Council on Bioethics report examined issues related to life, health, and death in our aging society. Clinicians who provide care for older people are expected to be familiar with these issues. For clinicians in long-term care settings, where death is a part of the landscape, it is especially important. This article presents a thumbnail summary of one chapter in the report.
In the 1970s, one of America’s preoccupations was health care decisions at the time of near death. Images were conjured of dying people, unable to speak for themselves, with tubes stuck in various parts of the body, and especially with tubes down the trachea, to maintain life. A sidebar in a New York Times Magazine story described popular interest, and, in a reflection of the era, said:
Many civil libertarians assert that one’s mode of dying should be as privileged a part of one’s life-style as long hair, clothes, and sex.1
The slogan “Death with Dignity” became a rallying cry to demand that individuals be allowed to determine, ahead of time, how they will be treated when death seems imminent. People were worried that their life would be prolonged in a state of “vegetated animation,”2 a term in a legal review that probably led to the popular phrase, “life as a vegetable.” Many people proclaimed they did not want to be a vegetable, and they did not want to cause a financial burden to their families from unwanted care.
A way to satisfy these concerns was proposed. The Living Will would assure that an individual’s wishes would direct treatment, “If there is no reasonable expectation of...recovery from physical or mental disability....” In 1973, after a note in a Dear Abby column, more than 50,000 people wrote to a foundation for free copies of “A Living Will.”3 (See Table for terms and definitions.)
| Table: Terms and Definitions for Advance Care Planning |
| Advance Treatment Directives - Written or spoken declarations to shape care if and when a person cannot make independent choices. An umbrella term, it includes both instruction and proxy directives. |
| Instruction Directives - Written or spoken statements of actual treatment preferences. Can be specific or general. |
| Living Wills - Written instructions. When first popularized, they were vague. More recently, many are specific, and allow people to list individual medical interventions. Instructions can express refusal of interventions, and also allow a person to request interventions. |
| Proxy Directives - Also called "Health Care Power of Attorney." Written or spoken directives delegating decision-making power to another individual if and when a person becomes incapacitated. |
Adapted from The President's Council on Bioethics. "Taking Care: Ethical Caregiving in Our Aging Society." Washington, DC; September 2005.
California enacted its Natural Death Act in 1976. The act established that adults have the right to decide about life-sustaining treatments. They can make written directives in advance to instruct their physician to withhold life-sustaining procedures if they were unable to communicate their wishes at the time for the decision. Other states soon followed with similar acts, and now all 50 states have advance directive laws.
In 1990, the U.S. Congress passed the Patient Self-Determination Act. This law requires hospitals, nursing homes, and other facilities to provide information to patients/residents about their rights under state law about advance directives. The institutions also must inquire whether the person has a directive, and note that information in the person’s chart.
However, the Living Will and state laws did not ameliorate the problem. Indeed, they raised as many issues as they proposed to solve. Last summer, The President’s Council on Bioethics examined this and related subjects.4 Their report is comprehensive and, consequently, long. Here, we summarize Chapter 2, “The Limited Wisdom of Advance Directives.” We present no analysis of the report, but nevertheless warn that summarization is subject to interpretation.
SUMMARY OF “THE LIMITED WISDOM OF ADVANCE DIRECTIVES”
In general, adults who are competent have the right to accept or reject any specific medical treatment. If a person is not capable* of making or expressing a decision, courts have felt the next best option might be to estimate what the person would have decided. Informal advance directives sometimes can be instructive, but not always. In cases involving people with advanced dementia, for example, courts have ignored informal statements about treatment preferences. This supports the need for a formal document such as the Living Will.
Living Wills offer certain benefits:
1. They preserve self-determination, a basic tenet of freedom. They allow people to direct what happens to them.
2. They allow personal expression. A person can choose to have his/her death express life principles and goals.
3. They offer protection against maltreatment, including non-utilitarian painful treatment or premature treatment cessation.
4. They can assuage anxiety in the family at a time of stress. For example, they can help determine if the main focus of terminal care should be on comfort, personal dignity, or to die peacefully at home.
5. They can relieve some of the burden on loved ones, and give permission to make decisions without feeling total responsibility for the decisions. Decisions would be, after all, in line with what the patient wanted.
6. They may save money by not “wasting” money on expensive end-of-life maneuvers. Individuals may prefer the money be saved for a spouse or children.
7. They can reduce the risk of litigation. They can protect clinicians who follow a person’s directives. They can also prevent litigious arguments among family members about “what to do.”
Living Wills are also seen as a way to encourage communication about a topic often too uncomfortable to discuss freely. With all of these potential benefits, why haven’t Living Wills solved the ethical issues surrounding end-of-life care decision-making?
Problems with Living Wills:
1. Not many people actually have Living Wills—less than 25% in some studies. Why not? Some reasons are: procrastination; they are too difficult to execute; there is suspicion they don’t make any difference; and Living Wills are against the culture or personal beliefs of some people, who feel it is a family responsibility to make such decisions.
2. People don’t have clear treatment preferences. They don’t know the clinical conditions or treatments, or the implications of either. They are vague or misinformed about the purpose and effectiveness of treatments. There are just too many possible future situations for anyone to fully comprehend.
3. Living Wills often are not clear. What, in any particular case, is the actual meaning of phrases such as, “if the burdens of treatment outweigh the expected benefits”? And when the directive is made to be specific, it increases ambivalence by the patient.
4. Living Wills don’t always reach the people who make the clinical decisions. One study showed that when Living Wills were available, only about one-fourth of the medical charts indicated the fact.
5. Living Wills often have little or no impact on surrogate decision makers and actual care. There are many reasons for this, including that specific care decisions may not seem to be covered by the Will.
But probably the greatest limitation of Living Wills is change. People change. Robust, healthy young people may feel that life with severe impairments is not worth living; however, when they approach that possibility, they learn they can adapt, and life may seem more precious. Fixing a treatment decision on a preference written long ago would deny the person the opportunity to change his/her mind.
Treatments change. No one today can predict the effectiveness (benefit) of future treatments, nor can one predict the suffering (burden) of such treatments. Lacking the ability to see the future in a crystal ball, how can one make a decision today about treatment tomorrow?
There is a special case: the person with advanced dementia. Are there not interests other than the person’s previously expressed autonomy? A person with advanced dementia may not be unhappy, may not be suffering. Is there a societal interest to preserve the identity and life of that person? Does that person still have a human identity and worthiness for care?
CONCLUSION
Procedural solutions such as Living Wills do not free us from ethical and philosophical questions. A less vexing alternative to the Living Will is the Proxy Directive, which gives up some autonomy, but emphasizes more interdependence, and allows flexibility to adapt a person’s wishes to the reality of the specific situation. In this way, it may be more in accord with ideals of family and community life. Still, there are people for whom no acceptable proxy is available, and Living Wills remain a choice for them.
* “Capacity” is used instead of “competency” to avoid negative stereotypes. Thus, a person is said to “lack the capacity” rather than to be incompetent.
Please submit manuscripts on ethical issues in long-term care to Fred Feinsod, MD, MPH, CMD, Department Editor, at Feinsod@fmfmd.com.
