Health care advance directives are legal documents that communicate a person’s wishes about health care decisions in the event the person becomes incapable of making health care decisions. There are two basic kinds of advance directives: living wills and health care powers of attorney. (See also Overview of Legal and Ethical Issues in Health Care.)
A living will expresses, in advance, a person’s instructions or preferences about future medical treatments, particularly end-of-life care, in the event the person loses capacity to make health care decisions.
A health care power of attorney appoints a person (called a health care agent or proxy, health care representative, or other name depending on the state) to make decisions for the person (the principal) in the event of incapacity (temporary or permanent) to make health care decisions.
Normally, people communicate their wishes directly to their doctors. But when a person no longer has the capacity to make or communicate a health care decision, another way to make and communicate a decision is needed. That is the role advance directives play. If no advance directive has been prepared, someone else recognized by state law or appointed by a court may be called on to make health care decisions. Many states authorize default surrogate decision makers, usually next of kin when the patient lacks capacity and has not appointed a health care agent.
When state law does not authorize a default surrogate decision maker, doctors and hospitals still usually turn to next of kin, although the extent of their legal authority becomes less clear. In the rare event that the issue is referred to a court, courts generally prefer to name a family member as guardian or conservator to make health care decisions, but they may also turn to a friend or a stranger to direct care. A health care power of attorney (and a living will if it provides useful guidance) eliminates almost any need for the courts to get involved and helps ensure that the person’s health care decisions will be respected.
A living will is a limited document that expresses a person’s preferences for future medical care. It is called a “living" will because it is in effect while the person is still alive. In many states, the document is more formally called a medical directive to doctors or a declaration.
The focus of a living will is usually end-of-life care, but it can include instructions about any aspect of care or treatment. Living wills become effective only when the person has lost capacity to make health care decisions and the person has a particular condition defined by state law—usually a terminal condition or permanent unconsciousness. Some states recognize additional conditions such as an end-stage condition (for example, advanced Alzheimer disease) or any condition specified in the living will.
Many people believe that death is preferable to being perpetually dependent on medical equipment or having no hope of returning to a certain quality of life. Others feel just as strongly that extreme heroic measures and technology should be used to extend life as long as possible, regardless of the degree of medical intervention required or the quality of life that results. A living will allows a person to express either of these preferences (or any intermediate measure that the person finds acceptable). Including information in a living will about core values relating to end-of-life care, personal priorities, and goals of care can be just as helpful, if not more so, than specific treatment wishes, because most specific treatment decisions are unforeseeable.
To be legally valid, a living will must comply with state law requirements such as those regarding how the document is signed and witnessed or what must be included in the text of the document. Many states have specific forms available for people to use if they choose. People can usually find examples of acceptable forms from hospitals and other health care practitioners, local offices on aging, or law (bar) association web sites.
Typically, living wills address the issue of when the goals of treatment should change from aggressive, curative efforts to efforts that primarily provide comfort care and allow a natural death. Everyone draws this line somewhat differently depending on their values, beliefs, and goals. In their living will, some people give mainly general guidance, whereas others also give instructions about particular treatments, such as artificial nutrition and hydration (tube feeding), cardiopulmonary resuscitation (CPR), or mechanical ventilation.
Everyone's situation and wishes are unique and complex. Thus, the brief examples of living will language included here are provided simply to help illustrate the wide variety of issues. For example, to indicate a preference for full aggressive medical treatment, the document might state: "I want my life to be prolonged to the greatest extent possible without regard to my condition, the chances I have for recovery, the burdens of the treatment, or the cost of the procedures." It should be noted, however, that the person’s choice has certain limits. For example, health care practitioners are not required to provide treatments that are medically inappropriate or clearly futile.
To prevent heroic attempts to extend life, the document might state: "If I have a terminal condition or am in a persistent vegetative state from which I am not expected to recover, and life support will only delay the moment of my death, I do not want my life to be prolonged, and I do not want life-sustaining treatment (including artificial feeding and hydration) to be provided or continued.”
Still others may draw this line differently. For example, they might want the document to state: “If I have permanent and severe brain damage (for example, I can open my eyes, but I cannot speak or understand) and I am not expected to get better, I do not want my life to be prolonged, and I do not want life-sustaining treatment (including artificial feeding and hydration) to be provided or continued.”
In all cases when people refuse care through an advance directive, health care practitioners are nonetheless always required to provide comfort measures as needed for the person’s condition.
Living wills have substantial limitations. For example, they generally address only a narrow range of end-of-life decisions, they cannot realistically anticipate all the serious medical circumstances the person may face in the future, and the written document may not be available at the time and place needed. Also, peoples' preferences often change as they develop a progressive illness or as their values or priorities change over time.
Living wills are often done long before serious decisions actually need to be made, so highly specific directions may not have been intended for new and unforeseen circumstances. Nevertheless, a living will can provide general guidance to health care practitioners and the person’s surrogate decision makers in the face of serious illness.
Did You Know...
A health care power of attorney is a document in which one person (the principal) names another person (the health care agent, proxy, representative, or surrogate, depending on the state) to make decisions about health care in the event the principal losses capacity to make health care decisions. Like the living will, this document may be called by different names in different states.
A health care power of attorney differs from a living will in that it focuses primarily on the decision-making process and not on a specific decision. When writing a living will, no person can anticipate all possible circumstances. Thus, the power of attorney for health care can cover as broad a range of health care decisions as the principal desires.
Once in effect, the agent can act in the here-and-now, review the medical record, serve as an advocate, discuss care and questions with the medical staff, and decide what the principal would want or what is in the best interest of the principal if the principal's wishes are not known. The health care power of attorney can include a living will provision—a description of health care preferences—or any other instructions but should, preferably, do so only as guidance for the agent, rather than as a binding instruction.
The agent should be selected with great care. A person who strongly wishes to avoid aggressive medical treatment should not name an agent who might not carry out such wishes. For example, selecting as agent a person who believes that every possible medical intervention should be used to prolong life, or a spouse whose emotional state might make it difficult to limit or terminate care, may not be wise. A better choice might be a trusted associate, advisor, or a longtime friend.
An ideal agent has the ability to talk effectively with health care practitioners and act as a strong mediator and advocate when faced with resistance from the principal’s family members, friends, or health care practitioners. Principals should discuss the goals, values, and wishes they want agents to use as guidance, because agents will need all the guidance possible when making decisions that can be extremely difficult. In addition, a principal should make sure that the agent is willing to take on this responsibility before the principal names the person as agent.
In most states, two or more people may be named to serve as agents together (jointly) or alone (severally). However, such joint appointments can create conflicts and complications and should probably be avoided or discussed with an attorney. If feasible, the health care power of attorney should name an alternate or successor agent in case the first-named person is unable or unwilling to serve.
The law of each state describes the rules and procedures necessary for making a valid health care power of attorney as well as living will. These rules should be followed carefully. Most states require two qualified witnesses to sign the document, and some permit notarization as an alternative. A principal who has capacity can cancel the health care power of attorney at any time. The choice of agent does not have to be permanent. If circumstances change, the principal can and should create a new health care power of attorney and/or name a new agent.
The health care power of attorney is important for younger as well as older adults because a health care agent can act during periods of temporary clinical incapacity as well as during more likely permanent incapacity near the end of life. It is especially important for anyone who wants someone other than next of kin to control decision making (for example, a partner, friend, or anyone else legally unrelated). It is the only way, outside of a court proceeding (which is a complicated process), to give that person the legal authority to make health care decisions and to ensure rights of visitation and access to medical information.
Ideally, copies of the living will or health care power of attorney should be given to every doctor providing care for the principal and to the hospital upon admission. Copies should also be placed in the principal’s permanent medical record, given to the principal’s appointed agent and lawyer, and placed with important papers. People should also provide copies to other close family or friends who will likely be involved during serious illness. This helps avoid surprise and controversy when difficult decisions have to be made by the agent. Web-based databases that store information about peoples' advanced directives and that can be accessed by health care practitioners are becoming increasingly available. Advance directive smartphone apps are also available, allowing people to store advance directives, share them with family members, and send them electronically to doctors.
Having multiple advance directives or ones that are overly complicated can create confusion. If there is both a living will and a health care power of attorney, the principal should stipulate which should be followed if the documents seem to conflict. In general, a health care power of attorney is preferable if the principal has a trusted person to appoint as agent.