End-of-Life Issues

As the range of options for extending life and for hastening death continues to expand, so the range of issues faced by clinical evaluators also has grown. Among the most complex are those surrounding requests for assisted suicide, euthanasia, or the withdrawal or refusal of life-sustaining interventions. The availability of some of these alternatives varies by jurisdiction and medical condition, although all persons are afforded the right to refuse life-sustaining treatment. However, like all treatment decisions, requests to hasten death depend on the patient’s decision-making competence. Forensic evaluators have increasingly been asked to participate in competency evaluations, particularly around end-of-life treatment decisions. For the patient who is incompetent to make treatment decisions, advance directives can help determine the course of end-of-life treatment and help preserve the patient’s autonomy. But advance directives often raise a new set of questions regarding exactly when the directive should be implemented and, if a health care proxy has not been appointed, who should make treatment decisions. As public debates regarding legalized suicide or euthanasia progress, these issues will likely become even more important.

Defining Clinical/Legal Issues at the End of Life

This following section defines key terms and concepts pertaining to end-of-life decision making, including physician-assisted suicide (PAS), euthanasia, do-not-resuscitate (DNR) orders, and advance directives. Perhaps the most controversial of these issues are PAS and euthanasia. Both these interventions involve actions that directly lead to a hastened death in a seriously ill person; however, they vary in the nature of the clinician’s involvement. In PAS, the clinician provides assistance and guidance, typically in the form of a prescription for medication that the patient can use if he or she chooses to commit suicide. Of key importance, it is the patient and not the physician who ultimately administers a lethal dose of medication. In 1997, this practice was legalized in Oregon, resulting in fierce public debate. Euthanasia, on the other hand, involves the intentional administration of a lethal medication by the clinician (presumably in response to a patient’s request) for the sole purpose of ending life. In 1998, one of the leading proponents of euthanasia, Dr. Jack Kevorkian, provided a lethal injection (i.e., euthanasia) to a patient suffering from amyotrophic lateral sclerosis (ALS, also known as Lou Gehrig’s disease) on national television. He was subsequently convicted of second-degree murder and sentenced to 10to 25 years in prison. Although euthanasia is now legal in the Netherlands and Belgium, it remains illegal in the United States.

Both PAS and euthanasia are distinguished from the clinical practice of administering high doses of pain medication in an effort to control severe pain, often with the awareness that death is likely to occur. This practice, referred to as “the law of double effect,” differs because the express purpose of the medication is to control pain, not to end life.

In addition to interventions that have the direct effect of ending life immediately, there are a number of other death-hastening procedures that are often the source of controversy and psycholegal inquiry. For example, death can be hastened by withdrawing or refusing life-sustaining medical care, sometimes referred to as “passive euthanasia.” This includes decisions to remove mechanical ventilation (i.e., a machine to keep a comatose patient breathing), refuse needed renal dialysis, or refuse or terminate artificial nutrition and hydration. In such cases, the rejection of needed medical interventions can hasten a death that might otherwise be delayed for weeks, months, or even years. Yet while legal debate and controversy surrounds more direct interventions such as PAS and euthanasia, the right of a mentally competent adult to refuse life-sustaining interventions is uncontested.

Refusal of life-sustaining interventions becomes more complex and controversial when the patient no longer has the capacity to make or articulate a competent decision. In patients with life-threatening or terminal illness, such situations are often anticipated, and patients provide their consent in advance. There are two legal mechanisms to accomplish this goal: Advance Directives (ADs, sometimes called “Living Wills”) and the Durable Power of Attorney or Health Care Proxy (although different jurisdictions have used slightly different labels to describe these two types of legal instruments). Regardless of the term used, both alternatives enable the patient to influence treatment decisions that may arise after he or she has lost the capacity to provide informed consent.

ADs are broad in range and encompass highly specific interventions and situations such as the DNR order (a refusal of CPR if the patient’s heart stops) to very broad documents that specify multiple scenarios in which different treatments are desired or rejected. The broadest mechanism of all is the health care proxy or durable power of attorney, where the medically ill or elderly person appoints another individual to make treatment decisions on his or her behalf in the event that he or she becomes incapacitated. Each of these ADs provides a mechanism for individuals to protect their autonomy and influence treatment decisions, although both ultimately rely on another person’s willingness or ability to carry out the patient’s wishes. Moreover, while these instruments remain dormant until the patient loses the capacity to make treatment decisions, controversies often arise as to whether the situation described in an AD exists (e.g., if the patient has specified that treatment should be withheld if no chance of recovery exists). In such cases, medical, mental health, and forensic specialists are often asked to provide input to determine appropriate directions.

Legal History of the “Right to Die”

Although case law regarding the right to determine what medical treatments are implemented is longstanding, end-of-life treatment decisions were rarely addressed before the seminal New Jersey Supreme Court decision In re Quinlan (1976). Although this case never reached the Supreme Court, the request by Karen Quinlan’s parents to terminate the mechanical respirator that was keeping their daughter alive was widely recognized as the first significant challenge to the medical profession’s practice of extending life as long as possible.

The right-to-die issue first reached the U.S. Supreme Court roughly 15 years later, in Cruzan v. Director, Missouri Department of Health (1990). Like Quinlan, this case also involved a young woman, Nancy Cruzan, who fell into a persistent vegetative state (i.e., comatose with no evidence of brain activity) that required the insertion of a feeding tube. After 4 years, her parents requested the removal of the feeding tube to allow their daughter to die. The hospital refused to comply, and the Cruzans subsequently sued the Missouri Department of Health. Although the Court ruled in favor of the state, the decision affirmed the right of competent persons to refuse life-sustaining medical intervention, whether through their own decision making or through ADs. However, the Court left standards for determining decision-making competency and guidelines for decision making to the states.

The Supreme Court addressed hastened death even more directly in a pair of 1997 cases that challenged existing prohibitions against PAS. In Washington v. Glucksberg (1997) and Vacco v. Quill (1997), the Court considered the question of whether permitting some terminally ill patients to discontinue life-sustaining treatment (e.g., the Cruzan decision), while denying other terminally ill individuals the right to hasten death (i.e., those who do not require such interventions) violated the Due Process and Equal Protection clauses of the Fourteenth Amendment. Although the Court rejected this assertion by distinguishing between active and passive methods for hastening death, the Court opined that decisions about PAS could be determined by the individual states, essentially clearing the way for legalized PAS.

The Court’s opinion was not accidental; 3 years earlier, Oregon voters had approved a ballot referendum authorizing the Death with Dignity Act, legalizing PAS in that state (a number of other states have held referendums on this issue before and since Oregon’s, but voters have rejected these proposals). In October of 1997, shortly after the Washington v. Glucksberg (1997) and Vacco v. Quill (1997) rulings, Oregon’s referendum took effect, making this the first and only state in the United States to legalize PAS. Under the guidelines of the Oregon’s Death with Dignity Act (or ODDA), an Oregon resident may request a prescription for a medication that will result in death. The individual must be 18 years of age or older, with a terminal illness and a life expectancy of less than 6 months. Additionally, the individual must be capable of making a “reasoned judgment” (described further below). Request for PAS must be made at least twice, of which one request must be written, and the physician is required to solicit a second opinion regarding the patient’s diagnosis. Finally, the physician is responsible for determining if a mental disorder has impaired the patient’s judgment (i.e., rendered him or her incompetent) and, if so, whether mental health consultation and/or treatment is required. This latter requirement has engendered considerable controversy, largely because of concerns that patients with significant depression may not be accurately identified. However, data from Oregon indicate that requests for PAS are relatively rare, accounting for roughly 1 in 10,000 Oregon deaths (.01%) or 40 to 50 requests per year. Of those patients who qualify for PAS and fulfill all the requirements, approximately two thirds ultimately die by ingesting the prescribed medication. This rate is substantially lower than data from the Netherlands, where euthanasia accounts for roughly 3% of all deaths.

Treatment Decision Making

A critical element of end-of-life decision making is the ability of the patient to make a rational, informed choice. The term competence refers to a determination as to whether one is legally authorized to make decisions for himself or herself. However, it can be difficult to determine competence in terminally ill patients, in part because impairments are often subtle, like dementia or depression (vs. psychosis, which is a common basis for incompetence among psychiatric patients). Even when “rational thinking” appears intact, symptoms such as depression can affect end-of-life decisions. For example, depression can increase a patient’s skepticism about the efficacy of pain or symptom control and contribute toward a feeling of hopelessness, at times leading to requests for PAS or refusals of life-sustaining interventions despite longstanding moral or personal objections to hastened death. Later, once symptoms have been treated, these patients may be thankful that their request for euthanasia was not fulfilled. On the other hand, denying terminally ill patients the right to refuse life-sustaining treatment may inflict undue pain and distress, essentially ignoring the patient’s autonomy. Thus, accurate evaluations of a patient’s decision-making capacity, once this ability has been called into question, is critical and requires considerable expertise, both in the legal issues (i.e., evaluating decision-making capacity in general) as well as the specific context (severe or life-threatening illness).

Once a patient has been found incompetent to make treatment decisions, the mechanism for deciding among treatment options hinges on the particular jurisdiction. This process is, in theory, greatly simplified when ADs exist to document the patient’s wishes. However, in actuality, ADs are often less helpful than patients assume. These instruments often present information in vague terms (e.g., “when the prognosis for recovery or posttreatment quality of life is extremely poor”) that make it difficult to determine exactly when to apply the directive. Furthermore, physicians may be reluctant to carry out the patient’s wishes, even when no dispute as to applicability of the directive exists (particularly if they disagree with the decision). In the absence of a designated health care proxy, families may debate about whom to appoint to make treatment decisions on the patient’s behalf or disagree about which course of action is best. Although a mental health evaluator may participate in helping clarify issues such as decision-making capacity, determining who acts as the surrogate decision maker and establishing guidelines for decision making are usually left to the treating physician, hospital ethics committees, or even the courts.

References:

  1. American Medical Association Council on Ethical and Judicial Affairs. (1998). Optimal use of orders not to intervene and advance directives. Psychology, Public Policy, and Law, 4, 668-675.
  2. Cruzan v. Director, Missouri Department of Health, 497 U.S. 261 (1990).
  3. Emanuel, L. L. (1988). Regulating how we die: The ethical, medical, and legal issues surrounding physician-assisted suicide. Cambridge, MA: Harvard University Press.
  4. In re Quinlan, denied, 429 U.S. 92 (1976).
  5. Rosenfeld, B. (2004). Physician-assisted suicide, euthanasia, and the right to die: The interface of social science, public policy, and medical ethics. Washington, DC: American Psychological Association Press.
  6. Vacco v. Quill, 521 U.S. 793 (1997).
  7. Washington v. Glucksberg, 521 U.S. 702 (1997).
  8. Werth, J., Benjamin, G., & Farrenkopf, T. (2000). Requests for physician-assisted deaths: Guidelines for assessing mental capacity and impaired judgment. Psychology, Public Policy, and Law, 6(2), 348-372.

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