An advance directive is a statement that declares what kind of lifesaving medical treatment a patient wants after he or she has become incompetent or unable to communicate to medical personnel. Advance directives, which are recognized in every state, are a response to the increasing ability of physicians since the 1950s to delay death through an array of medical technology, such as respirators, feeding tubes, and artificial hydration. This ability to prolong life has led to the need for doctors, patients, and patients' families to make decisions as to whether such technology should be used, especially in those situations when the patient is either near death, comatose, or severely and chronically ill.
Advance directives are an outgrowth of the doctrine of "informed consent." This doctrine, established by the courts, holds that patients, and not their physicians, are responsible for making the final decision about what medical care they want after being provided with complete and accurate medical information. It represents a shift from an earlier more paternalistic model of the doctor-patient relationship in which the physician made most medical decisions. The doctrine is based on the principles of autonomy and self-determination, which recognize the right of individuals to control their own bodies. An advance directive is a way of recognizing this right prospectively by providing instructions in advance on what the patient would want after he or she is no longer able to communicate his or her decision.
Types of Advance Directives
There are two forms of advance directives: living wills and health care powers of attorney. A living will, so named because it takes effect while the person is still alive, is a written statement expressing whether or not a person wants to accept life-sustaining medical treatment and under what conditions. For example, a living will may state that a person wants a ventilator, but not a feeding tube, in the event of an irreversible or terminal illness. Many states also have Do Not Resuscitate laws, a narrowly tailored type of living will, that allows patients to indicate that they do not want cardiopulmonary resuscitation if they suffer cardiac arrest. These laws also protect health providers from civil or criminal liability when honoring advance directives.
A health care power of attorney, also known as a durable power of attorney or a proxy, provides for someone else, usually a family member or close friend, to make decisions for the patient when he or she is unable. It is broader than a living will because it includes all medical decisions, not just those pertaining to life-sustaining medical treatment. It does not require that the person be terminally ill or in a vegetative state before it is triggered. However, unlike a living will, a proxy may not contain specific instructions on a patient's willingness to accept certain life-sustaining treatment. Instead it is left up to the appointed family member or close friend to determine what the patient would want, based on what the patient has said in the past or the patient's overall life philosophy. For this reason, it is helpful to combine living wills and a power of attorney in one document. Every state has laws that provide for living wills, health care proxies, or both. These laws are commonly referred to as Natural Death Acts.
Advance directives do not have to be in writing and can include oral statements made to family, friends, and doctors before the patient became unable to make a decision regarding his or her medical care. Most states require that evidence concerning these statements be clear and convincing. In other words, they should not be "casual remarks" but "solemn pronouncements" that specifically indicate what type of life-sustaining treatments the patient wants, and under what conditions. Because such statements are open to interpretation, and past remarks may not be indicative of what a patient presently wants, oral advance directives are often not effective.
If a patient has failed to execute a living will or health care proxy, many states provide for the designation of a surrogate decision maker (usually a family member). However, the situations when a surrogate may be appointed are limited. Depending upon the state, it may only apply when the individual has a terminal illness or is permanently unconscious, or to certain types of treatment, such as cardiopulmonary resuscitation. The surrogate must consider the wishes of the patient, if known, and his or her religious views, values, and morals.
Advance directives may not apply in an emergency situation, especially those that occur outside of a hospital. Emergency medical services (EMS) personnel are generally required to keep patients alive. Some states allow EMS personnel not to resuscitate patients who are certified as terminal and have an identifier, such as a bracelet.
Although the law encourages people to complete advance directives, most do not. It is estimated that only between 10 to 20 percent of the population have advance directives. There are several reasons for this. Young people think that they do not need one, even though the most well-known cases involving the right to die—Karen Ann Quinlan and Nancy Cruzan—involved young women in their twenties in persistent vegetative states. For old and young alike, bringing up the issue with potential surrogates, such as family and friends, can be uncomfortable and upsetting. Some individuals, especially those from traditionally disenfranchised populations such as the poor and minority groups, may fear that an advance directive would be used to limit other types of medical care.
Another primary reason why advance directives are not completed is that oftentimes patients wait for their physicians to broach the subject, rather than initiating it themselves. In a 1991 Harvard study four hundred outpatients of thirty primary care physicians and 102 members of the general public were interviewed to determine the perceived barriers to executing an advance directive. The most frequently cited reason for not completing an advance directive was the failure of physicians to ask about it. There are several reasons why physicians often do not initiate such discussions, including a belief that such directives are unnecessary (especially for younger patients) and lack of specific knowledge on how to draft one. Also, insurance companies do not reimburse physicians for their time spent discussing advance directives.
Limitations of Advance Directives
Even when advance directives are completed, they may not be complied with. One reason is that they may not be available when needed. In a self-administered questionnaire distributed to 200 outpatients in 1993, half of the patients who had executed an advance directive kept the only copy locked in a safe-deposit box. Hospitals may also fail to include a copy of the patient's advance directive in his or her chart. Physicians may be unaware of a patient's advance directive even when the document is placed in the patient's chart.
Another obstacle to the implementation of advance directives is that the documents themselves may contain ambiguities or terms open to interpretation, making it difficult to apply. For example, some living wills may simply state that the patient does not want heroic medical measures to be undertaken if the condition is terminal. But the term "heroic measures" can mean different things to different people. Artificial nutrition and hydration may be considered heroic to some, but not to others. Other living wills (and some state laws) require that a patient be terminally ill before it is activated. But physicians may disagree over the definition of terminally ill ; for some it means imminent death and for others it means an irreversible condition that will ultimately result in death. And even a clearly written advance directive may no longer represent a patient's wishes as death becomes imminent.
Health care proxies also have limitations. They often contain no guidance for the appointed person on the patient's views toward life-sustaining medical interventions. Decisions may therefore be based on what the proxy wants and not the patient. Because the proxy is usually a relative or close friend, this person's strong connections to the patient, and own feelings and beliefs, may influence the decisions made. This is especially true when it comes to withholding certain controversial treatments, such as a feeding tube. Figuring out what the patient would want can also be difficult. Past statements may not be indicative of present desires because a grave illness can alter views held when healthy.
Even when a patient's preference is clear, as expressed by the surrogate or within the document itself, physicians may not always comply with the patient's wishes. One of the largest studies of clinical practices at the end of life, the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment (the Support study) involved 4,805 patients in advanced stages of serious illnesses in five teaching hospitals located throughout the United States. The study found that physicians often ignore advance directives. This was true even where, as in the Support study, efforts were made to improve physician-patient communication on end-of-life decisions. The reasons are several, including unclear advance directives and pressure exerted by family members to ignore directives. Physicians may also fear that they may be sued for withholding life supports, although no such lawsuits have ever been successful.
Advance directives also pose a direct challenge to a physician's medical judgment. While the paternalistic model of the physician-patient relationship has been supplanted by one based on shared decision making and informed consent, remnants of the old model still remain. Physicians who see their primary goal as saving lives may also be less willing to yield to the patient's judgment, especially when it is difficult to predict with certainty whether life supports will enhance the patient's life or render dying more painful.
Improving Advance Directives
Attempts to address some of the deficiencies in advance directives have taken several tracks. One approach is to make advance directives more practical and easier to interpret and apply. One suggestion is to include specific medical scenarios and more detailed treatments (although too much specificity can leave out the present scenario). Partnership for Caring, an advocacy group located in Washington D.C., suggests including whether or not artificial nutrition and hydration should be provided being that these types of treatment often create disagreements. Another suggestion is to include a values history, a detailed rendition of the patient's religious, spiritual, and moral beliefs, which can provide guidance and clarification of the reasons for not choosing life supports. Still another approach recommended by the American Medical Association is the inclusion of general treatment goals, for example "restoring the ability to communicate, " that can be used to assess the appropriateness of a given intervention.
Other approaches to increase compliance with advance directives have focused on the behavior of physicians. The medical profession has been criticized for not adequately preparing physicians for dealing with death. Professional medical groups, such as the American Medical Association, have become more involved in preparing physicians by issuing guidelines and reports. A more extreme approach is advocated by some who have proposed imposing sanctions, either professional disciplinary action or penalties and fines, for ignoring an advance directive. Although some state laws provide for such sanctions, they are rarely if ever applied. Legal actions to recover monetary damages from the physician or health care provider for ignoring advance directives have also been initiated.
Other approaches include making the public and medical providers more aware of advance directives, and making them more accessible. A 1990 federal law, the Patient Self-Determination Act, requires hospitals, health maintenance organizations, and others that participate in Medicaid or Medicare to tell patients their rights under state laws to make end-of-life medical decisions. It also requires that advance directives be maintained in patients' charts. An important public education component of the law requires health care providers to educate their staff and the public about advance directives. Several states have tried more experimental approaches, including allowing advance directives to be displayed on driver's licenses and identification cards.
Advance directives are a relatively new phenomenon in medical care, with the first laws providing for them passed in the latter part of the twentieth century. Although there is widespread public support, that support is often more theoretical than practical. Changes in medical practices, the public's awareness, and the documents themselves have been proposed in order to encourage their use.
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