Advance directives, such as living wills, health care powers of attorney, do-not-resuscitate orders, and mental health care directives, are written legal documents that offer patients the opportunity to reflect upon and provide direction for their future medical care. They are important and useful tools to facilitate discussions between patients, family members, and physicians about end-of-life care choices, and they provide guidance and legal protection in those situations when a patient is no longer capable of declaring her care preferences and critical and difficult treatment decisions need to be made. Following an advance directive facilitates making end-of-life care decisions at the patient’s bedside rather than through contentious court proceedings. More importantly, advance directives are legal mechanisms that reinforce the fundamental professional and moral responsibility of health care providers and institutions to promote and protect patient autonomy, welfare, and dignity.

This chapter offers an introduction to advance directives, examining the general structure of the various types of advance directives, when they may be triggered, what clinical circumstances and decisions they may cover, as well as the relative strengths and weaknesses of the different advance directive instruments. Every state has laws describing the types of advance directives available in its jurisdiction, the processes by which such documents may be created and triggered, how and where they can be employed, and the legal protections afforded to care providers and health care facilities that carry out care decisions when guided by such documents. These laws may be supplemented by policies and procedures adopted by your local hospital or health care facility to direct the use of advance directives in your particular setting. Given the unique idiosyncrasies found from state law to state law and facility policy to facility policy, the reader should note that not all varieties of advance directive instruments may be available in your particular locale, and the processes used to carry out a particular advance directive may diverge from what is described in this chapter.

The 1960s and 1970s saw a movement toward greater patient participation in health care that resulted in new ways to ensure shared decision making between patients and their physicians. During this time, dramatic medical and technological advances underscored the importance of recognizing and incorporating the goals and values of all patients, while ethicists, the courts, and others came to a consensus that a decisionally capable patient has the right to accept or refuse any type of medical care. However, many persons feared a loss of control may occur if they became incapacitated and unable to make their own medical decisions. As a result, patients and potential patients became increasingly aware of the need to make provisions for their own future medical treatment.

Patient Self-Determination Act

In 1990, the U.S. Supreme Court heard the case of Nancy Cruzan, a 33-year-old woman diagnosed in a persistent vegetative state after a car accident in 1983. In the case of Cruzan v. Commissioner, Missouri Department of Health, 497 U.S. 261 (1990), Nancy’s parents sought to have the feeding tube removed and allow Nancy to die. The Court found that decisionally capable patients have the right to refuse life-sustaining therapies, including nutrition and hydration. However, the Court also indicated that states could require third parties acting on behalf of patients who are no longer decisionally capable to submit evidence of the patient’s wishes before granting a request to withdraw life-sustaining treatment.

Partly in response to the Cruzan decision, Congress passed the Patient Self-Determination Act in 1990. This law attempts to make it clear patients have the right to make decisions regarding their medical care. This includes the right to accept or refuse treatment and the right to complete an advance directive as evidence of their wishes. The law requires any health care provider participating in Medicare or Medicaid to provide all persons over the age of 18 with written information regarding the patient’s right to accept or refuse treatment and right to complete an advance directive. Providers include hospitals, nursing homes, home health care providers, hospices, and health maintenance organizations, but not outpatient-service providers or emergency medical personnel. The Patient Self-Determination Act also requires health care providers to document whether patients have advance directives, establish policies to implement advance directives, and educate their staff and the community about advance directives. Patients should also be informed that having an advance directive is not required to receive medical care.

Uniform Health Care Decisions Act

After the Cruzan decision, significant changes occurred in state laws across the United States regarding health care decision making. While every state passed legislation authorizing the use of at least one form of advance directive, there was very little uniformity between the laws. By 1993, state laws regarding health care decision making were often fragmented, incomplete, and sometimes inconsistent. Statutes in one state frequently conflicted both with other statutes from the same state, and with statutes from other states. With this confusion in mind, the Uniform Health Care Decisions Act (UHCDA) was drafted in 1993. Under the UHCDA, any adult or emancipated minor may execute or provide an “advance health-care directive,” which refers to either a “power of attorney for health care” or other “individual instruction.” If an individual fails to execute a power of attorney for health care or if the agent is not available, the UHCDA authorizes health care decisions to be made by a “surrogate” to be selected from a priority list. The Act also recognizes an individual’s authority to define the scope of any instruction or agency as broadly or as narrowly as the individual chooses.

Advance directives empower individuals to make their goals, values, and treatment preferences known before a loss of decisional capacity may occur. The term advance directives refers to oral or written instructions about a person’s medical care that provide guidance regarding medical treatment to health care professionals if and when the patient becomes unconscious or otherwise unable to make his or her own decisions. All 50 states, either through statute or case law, have provisions for honoring advance directives. Despite this, different jurisdictions utilize different standards, terminology, and limitations of authority. Physicians should become familiar with the local requirements for completing and honoring a legal advance directive.

The legal requirements for a valid advance directive vary from state to state, but in general any adult or emancipated minor with decisional capacity can execute an advance directive. In some rare instances an advance directive may have an expiration date, however in general an advance directive remains in effect until such time as the patient revokes it. Different states have different requirements for validly revoking an advance directive, but most recognize a decisionally capable person may revoke an advance directive at any time simply by making the intention to revoke clear to a lawyer or health care provider, either verbally or in writing.

Because of the additional effort required to complete a written directive, the written directive is generally held to have more power than oral statements; however, this should be evaluated on a case-by-case basis. Because not every medical situation can be anticipated, in some situations oral statements provoked by the situation of others or even a television program may be more directly relevant to the situation at hand.

Nonconforming Documents

While many state statutes contain standard or recommended language for advance directives, people are introduced to advance directives from a variety of sources, including financial planners, senior organizations, national agencies, and religious organizations, not to mention the Internet. Most state statutes explicitly acknowledge that versions of advance directives that do not contain the recommended statutory language, as well as some oral statements, may also be valid. Such nonconforming directives cannot be dismissed just because they do not contain the language recommended by statute. Evaluating directives that do not conform to the recommended language found in state statutes requires physicians to determine, with the assistance of the ethics committee or legal counsel if necessary, whether a nonconforming directive meets the state’s standard of reliability. In other words, is it clear that the patient intended to document his or her wishes with the intention that such documentation would be relied upon and followed by the health care team? Such seriousness of purpose can be demonstrated by a variety of means including if the document contains the patient’s signature, if the document is witnessed, if the document was presented to the physician by the patient as an advance directive, or if the patient discussed the document with family members as evidence of the patient’s wishes.

Advance Care Planning

When advance directives first came into existence, they were viewed as legal documents offering legal protection from unwanted treatment at the end of life. As the practice of medicine has become more patient centered, a greater focus has emerged on ensuring all medical decisions are not only clinically sound, but also based on the patient’s personal goals for care. Advance directives are best thought of as the result and documentation of a patient-centered process aimed at extending the rights of patients to guide their medical care, even through periods when they are no longer able to directly participate in decisions about their own care.

Optimally, before completing an advance directive, individuals will have the opportunity to have a structured discussion with their physician or other clinician about their health care wishes and goals. Ideally, these conversations are held before the patient becomes ill, even though physicians cannot discuss with specificity every scenario that may occur. Advance directives may simply contain general preferences, or they may contain specific instructions about particular treatments. Those that contain only general preferences can be less helpful in guiding care than those with specific instructions because general preferences can require more interpretation in light of the current medical evidence. For example, a patient’s statement “I don’t want to live hooked up to machines,” may mean the patient’s does not want CPR, or it may mean the patient wants all aggressive therapies until such time as those therapies fail to restore the patient to an acceptable quality of life. A comprehensive process of advance care planning includes a discussion of possible or likely scenarios based on the patient’s unique medical situation, a discussion of the patient’s values and goals, documentation of the patient’s values and goals, and a way to ensure that this information is available to present and future care providers. The advance directive as a document provides a legally recognized way to record this discussion.

Although state statutes vary, there are three basic types of advance directives: instructional, such as living wills; proxy, such as a power of attorney for health care; and combination directives, which provide both instructions for care and name a proxy to make decisions.

Instructional Advance Directives

Instructional directives provide consent or refusal for specific treatments that may need to be utilized when the patient is unable to make the decision, traditionally at the end of life (Table 34-1).

Living Wills

Living wills are the most common instructional directive. A living will directs physicians to withhold or withdraw life-sustaining measures and to provide only comfort care if the patient has a terminal illness and life-sustaining measures are prolonging the dying process without a chance for recovery. The living will thus addresses only a small subset of medical situations and critics cite the typically vague language and difficulty physicians have predicting with certainty when a patient is at the end of life as primary reasons that the document has fallen out of favor in terms of utility. Nevertheless, the document can be helpful as a starting point for further discussion, and it serves as evidence of a patient’s values, specifically that there are certain outcomes the patient would not wish to pursue. The living will is also a useful document for persons who do not have a designated agent or proxy since it speaks directly to the physician and does not require the consent of a designated agent or proxy in order for the physician to take action.