Law May Play an Important Role in End of Life Decisions

NEW YORK— The law “need not be a barrier to good decisions at the end of life,” Carl H. Coleman, JD, executive director of the New York State Task Force on Life and the Law, said at a panel discussion on legal issues and end of life care sponsored by the Association of the Bar of the City of New York.

The primary issue is the patient’s decision-making capacity, ie, the patient’s ability to understand the nature and consequences of a particular decision, which is the ability to provide informed consent. “Don’t assume the patient lacks capacity because of a certain age or diagnosis,” Mr. Coleman said.

Mr. Coleman noted that even if a patient lacks the capacity to make medical decisions, he or she may still have the capacity to name a health care proxy, designating a relative or friend to make health care decisions.

If the patient is found to lack decision-making capacity, the usual practice is to rely on family members to make decisions in accord with the patient’s wishes. In New York State, clear and convincing evidence of the patient’s wishes is required for life-sustaining treatment to be withheld or withdrawn. Mr. Coleman said that evidence of the patient’s wishes can be elicited by questioning family members and friends as to whether they ever discussed end of life issues with the patient.

He suggested that questions be asked as to the patient’s reactions to events in the news or to the medical care received by family or friends. A statement such as “I never want that to be done to me” provides an indication of the patient’s wishes.

Living Wills, Health Care Proxies

Such roundabout methods to determine a patient’s wishes can be avoided if the patient has left an advance directive. There are two forms of advance directives, the living will and the health care proxy.

Mr. Coleman pointed out that a living will can be used to request treatment as well as refuse treatment. If the patient wants unusually aggressive resuscitation, for example, that should be clearly stated in the living will.

A health care proxy is more comprehensive than a living will, as it gives the patient’s agent the authority to make health care decisions. Mr. Coleman said that a health care proxy is useful even if the patient has a living will, as the living will may not cover all situations.

With a health care proxy, the patient’s agent is empowered to make decisions about the patient’s medical care based on a good faith judgment as to the patient’s wishes or best interests. Health care providers must comply with the agent’s wishes or go to court to try to override them.

“The contents of a living will are important in the clinical setting, so that the patient’s wishes can be respected,” said Connie Zuckerman, JD, associate director of the Center for Ethics in Medicine, Beth Israel Medical Center, New York. However, patients sometimes provide such detailed instructions that they unintentionally complicate decision-making. “Providing inordinate detail to cover all possible contingencies is counterproductive for clinical staff,” Ms. Zuckerman said.

In many instances, an elderly person with chronic illness is first seen in the emergency room, often in a crisis situation and often with no advance directives. Each hospital has its own culture and its own protocols for handling such a situation, Ms. Zuckerman said. Some are more comfortable than others in meeting with families and arriving at a consensus. She emphasized that the family should be viewed as a resource, rather than as an adversary.

In the absence of written advance directives, it is not uncommon for there to be confusion regarding the authority for termination of life support. “It is legal to withdraw life support if that is the patient’s wish and if the family can provide evidence to substantiate their belief that that is what the patient would want,” Ms. Zuckerman said. Although the patient may not have had any written advance directives, the family can often provide “clear and convincing evidence of an oral advance directive.”

In nursing homes, too, advance directives are needed before crisis situations develop. “Too often, lack of advance directives leads to increased medical costs, increased emotional distress for the family, and a decreased quality of life,” said Ruth E. West, RN, BS, director of regulatory compliance and quality assurance, Greater New York Health Care Facilities Association.

Federal regulations require all nursing homes to provide information on advance directives at the time of admission. Ideally, residents and families should be informed as to their rights and educated about the issues and the ramifications of their decisions, Ms. West said. She stressed that specific issues, such as the provision of artificial nutrition and hydration, should be discussed.

“If there are no advance directives and family members disagree about treatment,” Ms. West said, “the individual who is able to provide clear and convincing evidence as to the patient’s wishes prevails.”