ACP-ASIM Section 2

Care of patients near the end of life

End-of-life care is an important aspect of medical practice. Individual physicians and the medical community must be committed to the compassionate and competent provision of care to dying patients and their families (31). Patients rightfully expect their physicians to care for them and provide them medical assistance as they are dying. Good symptom control; ongoing involvement with the patient; and physical, psychological, and spiritual support are the hallmarks of quality end-of-life care. Care of patients near the end of life, however, has a moral, psychological, and interpersonal intensity that distinguishes it from most other clinical encounters.

Patients near the end of life

To care properly for patients near the end of life, the physician must understand that palliative care entails addressing physical, psychosocial, and spiritual needs and that patients may at times require palliative treatment in an acute care context (32-34). To provide palliative care, the physician must be up to date on the proper use of opioids and the legality and propriety of using high doses of opioids as necessary to relieve suffering. The physician should know how to refer patients to appropriate palliative care, know how to use home-based and institution-based hospice care, and be aware of the palliative care abilities of the nursing homes to which patients are referred.

Making decisions near the end of life

Informed adults with decision-making capacity almost always have the legal and ethical right to refuse any recommended life-sustaining medical treatment (35). The patient has this right regardless of whether he or she is terminally or irreversibly ill, has dependents, or is pregnant. The patient's right is based on the philosophical concept of respect for autonomy, the common-law right of self-determination, and the patient's liberty interest under the U.S. Constitution (36).

Many patients, particularly those with terminal or irreversible illness, elect to forgo certain treatments or pursue treatments that their physicians may consider unwise. These situations demand empathy, thoughtful exploration of all possibilities, negotiation, or compromise and may require time-limited trials and additional consultations.

In the unusual circumstance that no evidence shows that a specific treatment desired by the patient will provide any benefit from any perspective, the physician need not provide such treatment. The more common and much more difficult circumstance occurs when the treatment will offer some small prospect of benefit at a great burden of suffering or financial cost, but the patient or family nevertheless desires it. If the physician and patient cannot agree on how to proceed, there is no easy, automatic solution. Timely transfer of care to another care provider who is willing to pursue the patient's preference may resolve the problem. Consultation with an ethics committee may be helpful. Infrequently, resort to the courts may be necessary.

Patients without decision-making capacity (see the section on informed consent) have the same rights concerning life-sustaining treatment decisions as mentally competent patients. Treatment should conform to what the patient would want on the basis of written or oral advance directives. If these instructions are not available, care decisions should be based on the best evidence of what the patient would have chosen (substituted judgments) or, failing that, on the best interests of the patient. Physicians should be aware that hospital protocols and state legal requirements affecting end-of-life care vary.

Advance care

Planning Advance care planning allows a competent person to indicate preferences for care or choose a surrogate in the event that the patient cannot make health care decisions. It allows the patient's values and circumstances to shape the plan and allows specific arrangements to be made to ensure implementation of the plan.

Physicians should routinely raise the issue of advance planning with competent adult patients during outpatient visits and encourage them to discuss their values and preferences with their surrogates and family members. These discussions let the physician know the patient's views, enable the physician to update the medical record, and allow the physician to reassure patients that he or she is willing to discuss these sensitive issues and will respect their choices. The patient and the physician should negotiate plans to make sure patient wishes are implemented. Discussions about patient preferences should be documented in the medical record. The Patient Self-Determination Act of 1990 requires hospitals, nursing homes, health maintenance organizations, and hospices that participate in Medicare and Medicaid programs to ask if the patient has an advance directive, to provide information about advance directives, and to incorporate advance directives into the medical record.

Advance planning takes place in conversations with the physician (with documentation in the medical record) or through written advance directives, such as a living will or durable power of attorney for health care (37). The latter enables a patient to appoint a surrogate who will make decisions if the patient becomes unable to do so. The surrogate is required to act in accordance with the patient's previously expressed preferences or best interests.

Living wills enable persons to describe the kind of treatment they would like to receive in the event that they lose decision-making capacity. Uncertainty about a future clinical course complicates the interpretation of living wills and emphasizes the need for physicians and patients to discuss patient preferences before a crisis arises. Talking about future medical care is an effective method of planning. Some state laws limit the application of advance directives to terminal illness or deem the advance directives not applicable if, for example, the patient is pregnant. Many states have documents that combine the living will and the durable power of attorney for health care into one document. Some specify requirements for witnessing the document. The primary care physician and other key heath care personnel should have a written advance directive in the patient's medical record.

When there is no advance directive and the patient's values and preferences are unknown or unclear, decisions should be based on the patient's best interests whenever possible, as interpreted by a guardian or by a person with loving knowledge of the patient. When making the decision to forgo treatment, many people give the most weight to reversibility of disease or dependence on life support, loss of capacity for social interaction, or nearness to death. Family members and health care workers should avoid projecting their own values or views about quality of life onto the incapacitated patient. Quality of life should be assessed according to the patient's perspective.

Problems of life-sustaining treatments
Withdrawing or withholding treatment

Withdrawing and withholding treatment are equally justifiable, ethically and legally. Treatments should not be withheld because of the mistaken fear that if they are started, they cannot be withdrawn. This practice would deny patients potentially beneficial therapies. Instead, a time-limited trial of therapy could be used to clarify the patient's prognosis. At the end of the trial, a conference to review and revise the treatment plan should be held. Some health care workers or family members may be reluctant to withdraw treatments even when they believe that the patient would not have wanted them continued. The physician should prevent or resolve these situations by addressing with families feelings of guilt, fears, and concerns that patients may suffer as life support is withdrawn.

Do-not-resuscitate orders

Intervention in the case of a cardiopulmonary arrest is inappropriate for some patients, particularly those with terminal irreversible illness whose death is expected and imminent. Because the onset of cardiopulmonary arrest does not permit deliberative decision making, decisions about resuscitation must be made in advance. Physicians should especially encourage patients who face serious illness or who are in advanced old age, or their surrogates, to discuss resuscitation.

Although a do-not-resuscitate order applies only to cardiopulmonary resuscitation, discussions about this issue often reflect a revision of the larger goals and means of the care plan. The entire health care team must be carefully apprised of the nature of these changes. Do-not-resuscitate orders or requests for no cardiopulmonary resuscitation should specify care strategies and must be written in the medical record along with notes and orders that describe all other changes in the treatment goals or plans. It is essential that patients or surrogates understand that a do-not-resuscitate order does not mean that the patient will be ineligible for other life-prolonging measures, both therapeutic and palliative. However, the appropriateness of a do-not-resuscitate order during and immediately after any procedure needs to be individually negotiated. It is unethical for physicians or nurses to perform half-hearted resuscitation efforts ("slow codes").

Sometimes a patient or surrogate insists on a resuscitation effort, even when they are informed that it will almost certainly fail. A family's religious or other beliefs or need for closure under such circumstances deserve careful attention. Although the physician need not provide an effort at resuscitation that cannot conceivably restore circulation and breathing, the physician should help the family to understand and accept this position. It is more controversial whether physicians may unilaterally write a do-not-resuscitate order when the patient may survive for a very brief time in the hospital. Some institutions, with forewarning to patients and families, allow physicians to write orders against resuscitation over the patient's or family's objections. Empathy and thoughtful exploration of options for care with patients or surrogate decision makers should make such impasses rare. Full discussion about the issue should include the indications for and outcomes of cardiopulmonary resuscitation, the physical impact on the patient, implications for caregivers, the do-not-resuscitate order, the legal aspects of such orders, and the physician's role as patient advocate. Physicians who write a unilateral do-not-resuscitate order must inform the patient or surrogate.

Determination of death

The irreversible cessation of all functions of the entire brain is an accepted legal standard for determining death when the use of life support precludes the use of traditional cardiopulmonary criteria. After a patient has been declared dead by brain-death criteria, medical support should ordinarily be discontinued. In some circumstances, such as the need to preserve organs for transplantation, to counsel or accommodate family preferences, or to sustain a viable fetus, physicians may temporarily support bodily functions after death has been determined.

Organ donation

There is an increasingly unmet need for organs and tissues. Physicians should be involved in community efforts to make potential donors aware of their option to make a gift that would enhance life, health, or sight by organ or tissue donation. Physicians should obtain consent from the patient for the disposal and use of tissue, organs, or other body parts removed during diagnostic or operative procedures. All potential donors should communicate their preference to their families and have it listed on such documents as driver's licenses or organ donor cards.

Physicians caring for dying or brain-dead patients who are potential donors should inquire about whether the patient had expressed preferences about donation (38). Federal and state law and health care accreditation bodies require that hospitals have procedures to ensure that families of hospitalized potential donors are made aware of the option to consent to organ donation. The issue of organ donation often arises in very difficult circumstances and may carry significant symbolic import for the family. Physicians should approach families with sensitivity and compassion.

Furthermore, organ procurement raises ethical concerns about the determination of death that have been partly addressed by legislation that defines brain death. It can also create conflict or the appearance of conflict between the care of a potential donor and the needs of a potential recipient. The care of the potential donor must be kept separate from the care of a recipient. The potential donor's physician should not be responsible for the care of the recipient nor be involved in retrieving the organs or tissue. However, the potential donor's physician may alert an organ-tissue procurement team of the existence of a potential donor. Once brain death has occurred and organ donation is authorized, the donor's physician should know how to maintain the viability of organs and tissues in coordination with the procurement team. Before declaration of brain death, treatments proposed to maintain the function of transplantable organs may be used only if they are not expected to harm the potential donor, whether by causing symptoms or by compromising the chance of survival.

Irreversible loss of consciousness

Persons who are in a persistent vegetative state are unconscious (39, 40) but are not brain dead. Because their condition is not progressive, patients in a persistent vegetative state are not terminally ill. They lack awareness of their surroundings and the ability to respond purposefully to them. The prognosis for these patients varies with cause. Some physicians and medical societies believe that there are no medical indications for life-prolonging treatment or access to intensive care or respirators when patients are confirmed to be in a persistent vegetative state (41). They conclude that these patients cannot experience any benefits or suffer any discomfort and that all interventions should therefore be withdrawn. However, many patients or families value life in and of itself regardless of neurologic state. For these reasons, goals of care should guide decisions about life-prolonging treatment for patients in a persistent vegetative state in the same manner as for other patients without decision-making capacity.

Intravenous fluids and artificial feedings

Artificial administration of nutrition and fluids is a life-prolonging treatment. As such, it is subject to the same principles for decisions as other treatments. Some states require high levels of proof before previous statements or advance directives can be accepted as firm evidence that a patient would not want these treatments in the setting of terminal illness, permanent unconsciousness, or advanced dementia. For this reason, physicians should counsel patients to establish advance care directives and complete these parts of living wills especially carefully. Clinically, there is unfounded concern that discontinuing use of feeding tubes will cause suffering from hunger or thirst despite research findings to the contrary. Physicians should carefully address this issue with family and caregivers.

Physician-assisted suicide and euthanasia

The debate over physician-assisted suicide is very important to physicians and patients. Both groups favor easing the dying process, providing adequate pain control, and avoiding unwanted overtreatment and protracted suffering. Patients and physicians may find it difficult at times to distinguish between the need for assistance in the dying process and the practice of assisting suicide.

Physician-assisted suicide occurs when a physician provides a medical means for death, usually a prescription for a lethal amount of medication that the patient takes on his or her own. In euthanasia, the physician directly and intentionally administers a substance to cause death. Physicians and patients should distinguish a decision by patients or their authorized surrogate to refuse life-sustaining treatment or an inadvertent death that occurs during an attempt to relieve suffering from physician-assisted suicide and euthanasia. Laws concerning or moral objections to physician-assisted suicide and euthanasia should not deter physicians from honoring a decision to withhold or withdraw medical interventions in appropriate situations. Fears that unwanted life-sustaining treatment will be imposed continue to motivate some patients to request assisted suicide or euthanasia.

In the clinical setting, all of these acts must be framed within the larger context of good end-of-life care. Many patients who request assisted suicide are depressed, have uncontrolled pain, or have potentially reversible suffering or fears (42). In the setting of providing comfort to a dying person, most physicians and patients should be able to address these issues. For example, with regard to pain control, the physician may appropriately increase medication to relieve pain, even if this action inadvertently shortens life (the "double effect").

Physician-assisted suicide may be legalized in some states, although no consensus currently exists among patients or physicians (43) or within the College. Many fear that physicians are inadequately trained to arrive at such a conclusion with patients. Concerns focus in particular on vulnerable populations-poor persons, persons with costly chronic diseases, demented persons, disabled persons, and very young children. Physicians and patients must continue to search together for answers to these problems without violating the physician's personal and professional values and without abandoning the patient to struggle alone. For now, the policy debate continues to evolve rapidly, and physicians should urgently strive to greatly improve the quality of end-of-life care (44).