Ethics, Law, and End-of-life Care

Palliative medicine in the United States, with its emphasis on end-of-life care, has long been inextricably intertwined with difficult ethical issues and consequent legal concerns. As technologic advances have extended the ability to prolong life (and to prolong the dying process), ethical and legal questions have arisen about the appropriate implementation or discontinuation of those technological interventions. Some U.S. legal cases that deal with ethical issues at the end of life have had a major impact on the law of medical practice, although the legal precedents generally follow medical ethical principles.

Major ethical and legal issues for end-of-life care include the issues of informed consent and refusal; limitation of treatment, including withholding and withdrawing life-sustaining medical treatment; the determination of a patient’s decision-making capacity; and the way in which decisions should be made if the patient does not have decision-making capacity. Other ethical and legal issues include the use of advance directives, the proper use of opioids in end-of-life care, a patient’s voluntary refusal of orally ingested nutrition and hydration, physician-assisted suicide, and palliative sedation.

Informed Consent

A basic tenet of Anglo-American law is the principle of informed consent . This doctrine is based on patient self-determination as well as the right of the patient to receive information that is material to making a decision to consent to a medical treatment or procedure. The principle of informed consent is based on a physician’s duty to tell the truth about the patient’s current medical condition and prognosis. In the past century, it was common to not tell patients who were diagnosed with a terminal condition about their diagnosis, but a sea change occurred when many inside and outside the profession recognized that it was essential for the physician to disclose the diagnosis and prognosis to the patient.

The patient needed to be told the truth not only about the diagnosis and prognosis but also about the proposed procedure or treatment, the risks associated with that treatment, the benefits of the treatment, and the alternatives to that treatment, including the alternative of no treatment ( ). Additionally, if patients refused treatment, they were also entitled to information about the consequences of that refusal (known as informed refusal ) ( ).

Often in end-of-life care, information that would normally be disclosed was forgone based on the assumption that it was lifesaving treatment, and, therefore, patients need not consent to that treatment. However, even life-sustaining medical treatment requires informed consent ( ), unless it is an emergency and the patient is no longer decisional and no legally authorized decision maker is available. Informed consent for end-of-life care should include not only the benefits of treatment but also the burdens or risks of treatment that the patient will have to bear, as well as the prognosis of the disease (if known) both with and without treatment.

Before life-sustaining medical treatment is begun, the patient and family should understand that the burdens of treatment may become so great that they may outweigh the prospective benefits of treatment. Additionally, the patient should be told that physicians may limit or stop treatment if it is no longer effective. A timely discussion with the patient and family that leads to an understanding of treatment possibilities and limitations may preclude later, painful discussions of “futile” treatment. If treatment is not successful, then further discussion about stopping treatment may not surprise the patient or family. It also gives the patient and family an opportunity to discuss with physicians, long before a crisis occurs, the fact that there may come a time when treatment may no longer be of benefit to the patient and thus will not be indicated.

When palliative and end-of-life care are among reasonable alternative treatments for a patient’s condition, informed consent may require that the patient be informed of these options. For instance, California statutory law requires that when a health care provider makes a diagnosis that a patient has a terminal illness, the health care provider shall, upon the patient’s request, provide the patient with comprehensive information and counseling regarding legal end-of-life care options pursuant to this section ( ).

Limitation of Treatment

In the United States, a legal and ethical consensus for limitation of treatment developed between the time the first state court considered the issue of withdrawing life-sustaining medical treatment ( ) and the time of the U.S. Supreme Court’s determination of the same issue 14 years later ( ).

The consensus holds that patients have the right to refuse any intervention, including life-sustaining medical interventions. A series of state Supreme Court decisions determined that patients have the right to refuse medical treatments that include ventilators ( ), administered nutrition and hydration ( ), and blood transfusions ( ). Another tenet of this consensus is that all patients—even incapacitated patients—have the right to refuse any medical intervention.

The U.S. Supreme Court confirmed this principle in the ), holding that patients have a liberty interest under the Constitution’s 14th Amendment due process guarantee to refuse life-sustaining medical treatment, although states may require clear and convincing evidence of the patient’s wishes if the patient is incapacitated. Another important principle of the ethical and legal consensus is that withholding and withdrawal of life-sustaining medical treatment are essentially equivalent and are not homicide or suicide ( ) and that orders to do so are valid ( ). An additional important principle of this consensus is that courts need not be routinely involved in end-of-life care decisions.

Decision Making for the Incapacitated

Because many patients for whom life-sustaining medical treatment decisions must be made have lost decision-making capacity, ethically and legally there is a consensus as to decision making for those who are incapacitated and unable to make their own decisions. If the incapacitated patient left directions in advance regarding his or her wishes (through either a living will or a power of attorney for health care document), those wishes should be followed. If no written directives were made but the patient’s wishes are known, a guardian, health care agent, or designated surrogate may make decisions on the basis of what the patient would have wanted, a process called substituted judgment . If the patient’s wishes are unknown, the decision maker must use the best interest standard —that is, consider what is best for the patient.

In the Terri Schiavo case ( ), the spouse and parents of an incapacitated patient in a persistent vegetative state battled over whether life-sustaining medical treatment in the form of artificial nutrition and hydration could be withdrawn. This case encompassed many ethical and legal issues. As contentious as this case was, however, certain principles were reinforced: Patients have the right to refuse life-sustaining medical treatment, even if incapacitated; and if a patient has expressed those wishes clearly, then a guardian may act according to those wishes. The Schiavo case also reinforced the principle that artificial nutrition and hydration are considered medical treatments and may be legally and ethically withdrawn under appropriate circumstances. Nonetheless, it is important to recognize that some disagreement exists among religious communities as to whether it is ethical to remove artificial nutrition and hydration from an incapacitated patient in a persistent vegetative state. The Schiavo case also demonstrated that family members may disagree about who should serve as guardian or surrogate for the patient.

Determination of Decision-Making Capacity

Patients who have decision-making capacity have the right to refuse life-sustaining medical treatment. Thus, when a patient refuses such treatment, the determination of decision-making capacity is crucial. Decision-making capacity has been defined as the ability to make decisions about medical care, and it can be contrasted with competence. The term competence is commonly used to indicate the ability to do something, but in the medical milieu it is more commonly used synonymously with legal competence —that is, the determination by a court as to the ability to make decisions about one’s person or property. Not all patients who have lost the ability to make medical decisions will have been declared legally incompetent, nor will patients who have been declared legally incompetent necessarily be unable to make any decisions with respect to medical care.

Decision-making capacity is constituted by the ability to understand information, reason and deliberate about a choice, make a choice consistent with values and goals, communicate the choice, and maintain stability of that choice over time. Although it has been noted wryly that questions of patient decision-making capacity typically arise only when the patient chooses a course other than the one the health care professional finds most reasonable, this is, in fact, not so ironic. Health care professionals generally make a treatment recommendation that is in the best interest of patients, and when patients agree with this course of action, there is generally less concern about the patient’s decision-making capacity. Thus, questions of decision-making ability arise when the patient chooses to refuse beneficial medical treatment.

Decision-making capacity is dependent on the individual abilities of the patient, the requirements of the task at hand, and the consequences of the decision. When the consequences of the decision are substantial, there is a greater need for certainty of the patient’s decision-making capacity. Decision-making capacity is not necessarily established by simply expressing a preference, having the content of the patient’s decision fit an “objectively correct” standard, or acting in accord with the physician’s recommendation. Some patients (e.g., the comatose) are clearly incapacitated, whereas decision-making capacity may be more difficult to determine in others (e.g., those in the early stages of dementia).

Advance Directives

Advance directives are written expressions of medical decisions that are made by the patient while he or she is still capable of making those decisions. A living will is a directive to a physician when the patient is nondecisional and has a terminal condition (including, in some jurisdictions, persistent vegetative state) in which the patient refuses life-sustaining medical treatment. A power of attorney for health care is the appointment of an agent to represent the patient when the patient is no longer decisional. It applies during any incapacity and is often written with directions to the agent about the patient’s treatment preferences, including preferences about nutrition and hydration.

Advance directives are appropriate planning tools for end-of-life decision making. However, only a minority of patients actually complete an advance directive, although the proportion is higher for patients facing the end of life. Additionally, studies show that proxy decision makers are often poor predictors of the patient’s wishes. There is also a current controversy about whether completion of advance directives significantly guides the course of patient care. Nonetheless, failure to engage in advanced care planning is worse, and advance directives may be more effective when they are part of a larger advanced care planning regimen in which the patient expresses wishes about end-of-life care to family members.

Advance directives are even more important in light of recent legal developments. In determining whether the guardian or surrogate may withdraw or withhold life-sustaining medical treatment of a patient who is no longer decisional, some state courts have required clear and convincing evidence of the incapacitated patient’s wishes. This requirement results, in part, from legislative concerns about withdrawal of life-sustaining medical treatment without the patient’s explicit consent, as well as the courts’ concern that the consequences of decisions to withdraw life-sustaining medical treatment are, for the most part, ultimately irreversible.

Advance directives may satisfy legal requirements for clear and convincing evidence of the patient’s wishes for withdrawal of life-sustaining treatment. The use of advance directives will allay legal concerns and may ensure that the patient’s wishes are implemented.