The medical profession in the United States has experienced a shift in ethics and values over the past 3 decades, from a position of paternalism to an emphasis on patient autonomy. As such, individuals are becoming increasingly involved in their medical care, especially with regard to decision making near the end of life. The desire to “control” the circumstances surrounding one's death has become the norm in the majority culture of the United States, and several practices have evolved to help ensure that this is accomplished. Advance directives and advance care planning are two such concepts that are discussed in this entry.
Near the end of life, patients and their families face a number of difficult decisions, such as whether to start or continue a given medical treatment. Advance directives are written documents that state an individual's wishes under specific conditions and in the event that he or she is no longer legally competent to make a decision. There are two general types of advance directives: durable power of attorney and living wills. A durable power of attorney (also known as a “health care proxy”) designates an individual who will make decisions for the dying person when he or she is no longer competent to do so. A living will is a document that specifies in writing what kinds of treatment are and/or are not wanted by the individual under specific conditions.
In addition, there are two types of directives that are specific to certain treatment interventions: the do not resuscitate (DNR) order and the do not hospitalize (DNH) order. The DNR indicates that no resuscitation measures (typically cardiopulmonary resuscitation [CPR]) should be undertaken if the patient goes into cardiac or respiratory arrest. The DNH order states that the person or the responsible party (relative or legal guardian) does not want the person to be hospitalized. DNH orders are typically issued when an individual's pain management, comfort care, and current treatment needs can be met either at the person's home or in a nursing home. This does not mean that the patient can never be hospitalized, but simply that before the decision to hospitalize is made, a discussion needs to occur between the competent patient or patient's family/guardian (if the patient is incompetent) and the attending physician to determine if hospitalization is what is best for the patient.
Although competent adults in the United States have long held the right to refuse life-sustaining medical treatment, individuals who were incompetent at the time a treatment decision was required, and their loved ones, had no option but to follow the decisions of the medical team. Marilyn Webb discussed several significant events that occurred between the late 1960s and the early 1990s and brought the concept of advanced directives to the attention of the public. This concept was introduced in 1967 when Luis Kutner, an attorney and member of the Euthanasia Society of America, proposed the first model of a living will. That same year, the Euthanasia Society began to distribute these model documents out to the public. In 1968 and again in 1973, Dr. Walter F. Sackett introduced a bill allowing patients to express their future desires regarding life-sustaining medical treatment to the Florida state legislature. However, the bill was defeated both times. In 1974, Barry Keene proposed a bill aimed at legalizing living wills called the Natural Death Act, but this too was defeated. It was not until the famous New Jersey Supreme Court ruling in the case of Karen Ann Quinlan in 1976 that proposals for advance directives were able to gain ground.
The events leading up to this case occurred in 1975, when the 21-year-old Quinlan went into a persistent vegetative state (PVS) after having accidentally ingested a potentially lethal combination of prescription medication and alcohol. At the time of her discovery, Karen had been unconscious and deprived of oxygen for at least 15 minutes, yet the medical staff used aggressive CPR in an attempt to revive her. All possible life-saving measures were taken to bring Karen out of the PVS, to no avail. After several months with no change, her medical doctors agreed that the chances were less than 1% that Karen would ever come out of the PVS. Her body had begun to shrivel and curl up into itself, and she would have frequent periods of involuntarily reflexes, such as grimacing, screaming, and crying. The doctors insisted Karen could not feel any pain, but it was very difficult for her family to watch her experience such suffering. After several months, Karen's family requested that her mechanical ventilator be removed so that she could die in peace. Karen's doctor initially agreed with Quinlan's family, but later recanted, stating it violated his moral values and contradicted established medical practice. This refusal began a long court battle for the Quinlan family who fought for the right to act as their daughter's legal guardian (because she was an adult at the time of her accident), and the right to withdraw the life-sustaining treatment she was receiving. On March 31, 1976, 2 weeks shy of a year since Karen had gone into a PVS, the New Jersey Supreme Court ruled that Joe Quinlan, Karen's father, would be her legal guardian and would be entitled to make medical treatment decisions on her behalf.
According to Webb, 3 months after the Quinlan ruling, Barry Keene proposed his bill once again, which, this time, was successful. With the passing of the Natural Death Act, California became the first state to legalize one type of advance directive, the living will. By 1977, 42 states had made similar proposals, with seven of them passing. In 1983, California made yet another significant step forward and enacted the Durable Power of Attorney for Health Care law, becoming the first state to recognize this type of advance directive. Finally, by 1992, all 50 states had legalized some type of advance directive. Despite the legalization of living wills and durable power of attorney, incidence rates of completed advanced directives remain very low.
In 1983, another famous case brought public attention to how laws regarding an individual's right to die can vary by state. Nancy Cruzan was a 25-year-old woman who went into PVS after a serious car accident. She had been fed through a feeding tube inserted into her stomach for 4 years before her family asked the rehabilitation center to remove her feeding tube. When the center refused, fearing they would be committing murder, the Cruzans took their daughter's case to court. The Missouri courts, however, were initially reluctant to rule in favor of the Cruzans, stating that clear and convincing evidence of what Nancy would have wanted must be presented before a ruling could be made. Three years later, the U.S. Supreme Court heard the case and ruled that the guardians of incompetent patients could ask that treatment be withheld or withdrawn but that states could determine the level of evidence needed to allow such a decision to be acted upon. Eventually, the Cruzans were able to have Nancy's feeding tube removed after three of her friends testified that, prior to her accident, she had specifically told them that she never would have wanted to remain alive in a persistent vegetative state.
During the Cruzan case, Senator John Danforth proposed the Patient Self-Determination Act (PSDA). Implemented in 1991, the PSDA was seen at the time as a large step toward increasing the utilization of advanced directives. The PSDA requires hospitals, medical centers, and nursing homes that receive federal funds (primarily referring to Medicare and Medicaid) to inform all patients, upon admittance to the hospital, of their right to make their end-of-life wishes known in the form of an advanced directive. The goal of this act was to increase public awareness and completion of advance directives. Despite good intentions, the number of individuals completing advance directives has not increased significantly since the inception of the PSDA. Current estimates place the incidence rate of completed advance directives for the general U.S. population somewhere between 15% and 25%.
In general, there are three types of laws that may come into effect when individuals are not competent to make their own decisions: laws regarding (1) living wills, (2) durable power of attorney, or (3) family consent (a.k.a. surrogacy or succession laws). States may have any one or a combination of these three laws in place. Laws regarding living wills and durable power of attorney vary by state but typically set forth guidelines for which advance directives are recognized, when the advanced directive may be applied (e.g., only when the person has been diagnosed with a terminal illness), who is eligible to make decisions for the individual, and how the decision regarding care is made.
Surrogacy or succession laws typically come into play when no written instructions have been set forth by the patient. When this occurs, a family member hierarchy is employed to determine who is eligible to make the end-of-life decisions for the patient. Possible hierarchies differ by state, but one example for an older adult might be spouse, adult children, next closest adult relative, friend of family, and medical professional. Surrogacy or succession laws can be helpful not only when there are no written instructions, but also when more than one medical treatment may meet the criteria set by a patient's advanced directive and the medical doctor wants to know which alternative should be used. Surrogacy or succession laws are also used when the patient's advanced directive is not entirely clear and needs to be clarified by someone who may know the patient's wishes.
As research on advance directives continues to accumulate, a number of questions have emerged in the literature, such as to what degree advance directives are utilized and followed, and whether they help to ease the burden experienced by family members. Some research has suggested that families of patients who have an advanced directive feel more involved in the decision-making process and more educated about what to expect near the end of their loved one's life. Studies have found that individuals who are more likely to have an advance directive tend to be older, white, more educated, less likely to have family who can make decisions for them, and more likely to be of higher socioeconomic status and at a higher level of cognitive functioning. Although not discussed in detail in this entry, as Jung Kwak and William Haley have noted, there are significant cultural differences in perceptions and use of advance directives.
Given this research, scholars and the public at large have continuously debated the utility of advance directives. Arguments for and against differ based on the advance directive in question, with some individuals being more in favor of one type over another. Proponents of living wills, for example, argue that this advanced directive offers the individual the most control over the circumstances surrounding his or her death and the most autonomy near the end of life. Opponents argue that it is impossible to predict every scenario that one may face and to provide treatment preferences for every possible end-of-life situation. Furthermore, they point out that individuals change their minds constantly throughout their lives as they gain more life experience. Thus, an individual's living will would have to be routinely updated at least every year to take these changes into consideration.
On the other hand, proponents of the durable power of attorney approach argue that unlike the living will, the designated decision maker can make a decision regarding the specific situation the patient is facing. Opponents, however, point out that the designated proxy may not follow the patient's wishes. For example, a daughter who holds her mother's durable power of attorney may be well aware that her mother never wanted to be put on a feeding tube, but may request that one be inserted because of her personal values or her difficulty accepting the terminality of her mother's condition. Another stated weakness of the durable power of attorney is that the designated proxy may be unaware of the patient's wishes in a given situation and thus may not be able to make an informed decision regarding medical treatment.
Some general problems with advance directives in addition to those already mentioned also exist. First, only a small percentage of the general population has an advance directive in place. Second, legal policies regarding advance directives vary by state. For example, in some states advanced directives apply only when an individual is terminally ill (typically defined as having less than 6 months to live) and do not cover situations where the patient is in a PVS and therefore can “live” in this condition for years. A third problem that expands on this is that many individuals do not fully understand the treatments they specify in their advanced directives. Research has consistently shown that many individuals do not understand how CPR works, what the survival rate of receiving CPR is, and the damage that can be caused to the body in the process. Studies have found that individuals often change their living wills after receiving this information. A final problem is that medical professionals are not routinely involved or consulted in the construction of advance directives. Research has shown that patients fill out advance directives primarily with their lawyer or family and rarely include their physician. This only adds to the problem of misinterpretation of what medical treatments entail and what purpose advance directives serve.
One possible solution to this debate has been the idea of “advance care planning.” This approach emphasizes continued discussion between a patient and his or her health care provider that aims to clarify the patient's values and wishes regarding end-of-life care in general, as opposed to the patient stating what he or she would want done in every specific situation possible. This approach can also help incorporate individuals' shifting opinions as they age and transition through different life stages, as well as ensure that the physician is continuously involved in the planning process. Research has even suggested incorporating a “values history” as part of the routine medical history that is taken in hospital settings, especially for elderly patients. A values history can assess personal values about quality of life, autonomy, family relations/burden, physical comfort and pain management, and treatment philosophy, to name a few. Understanding individuals' life values is important because such values are often associated with the likelihood of completing an advanced directive, as well as a patient's preferences for lifesustaining treatment such as CPR. For example, individuals who value quality of life over a desire to live as long as possible may be less likely to want extensive life-sustaining treatments near the end of life. This approach may even help the patient better understand his or her preferences regarding end-of-life care.
During the 20th century, several court cases and statutes have helped pave the way for incompetent individuals to exert some control over the circumstances surrounding their death. Yet, in spite of reforms that recognize the legal status of advance directives, debate surrounding the utility of these documents remains. At present, only a small proportion of the U.S. population has an advance directive in place, and states differ in their regulations regarding these documents. However, new approaches, such advance care planning, are evolving to address some of the limitations inherent in current advance directive practices. Although much research has been conducted on the utility of advance directives, the results are often mixed or incomplete. More research is needed to determine the approach to end-of-life care and decision making that will best address individuals' diverse preferences and needs near the end of life.
End-of-Life Decision Making, Legalities of Death, Persistent Vegetative State, Quality of Life, Right-to-Die Movement
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