End-of-Life Care

51.1 Palliative Care

Palliative care (from Latin palliere, “to cloak”) is concerned with treating the dying patient. It is geared to the relief of pain and suffering; it is not designed to cure. Physicians able to deal with death and dying are able to communicate effectively in several areas: diagnosis and prognosis; the nature of terminal illness; advance directives about life-sustaining treatment; hospice care; legal and ethical issues; grief and bereavement; and psychiatric care. Palliative care physicians must also be skilled in pain management, especially in the use of powerful opioids—the gold standard of drugs used for pain relief. In 1991 the American Board of Pain Medicine was established to ensure that physicians treating patients in pain were both qualified to do so and were kept up to date on the latest advances in the field.

COMMUNICATION

After a diagnosis and prognosis have been made, physicians need to talk to the patient and the patient’s family. Formerly, doctors subscribed to a conspiracy of silence, believing that their patients’ chances for recovery would improve if they knew less because news of impending death might bring despair. The current practice is now one of honesty and openness toward patients; in fact, the question is not whether to tell the patient, but when and how. The American Hospital Association in 1972 drafted the Patient’s Bill of Rights, declaring that patients have the “right to obtain complete, current information regarding diagnosis, treatment and prognosis in terms the patient can be reasonably expected to understand.”

Breaking Bad News

When breaking news of impending death to the patient, as when relating any bad news, diplomacy and compassion should be guiding principles. Often, bad news is not completely related during one meeting, but rather is presented so that it can be absorbed gradually over a series of separate conversations. Advance preparations, including scheduling sufficient time for the visit, researching pertinent information, such as test results and facts about the case, and even arranging furniture appropriately can make the patient feel more comfortable.

Telling the Truth

Tactful honesty is the doctor’s most important aid. Honesty, however, need not preclude hope or guarded optimism. It is important to be aware that if 85 percent of patients with a particular disease die in 5 years, 15 percent are still alive after that time. The principles of doing good and not doing harm inform the decision of whether to tell the patient the truth. In general, most patients want to know the truth about their condition. Various studies of patients with malignancies show that 80 to 90 percent want to know their diagnosis.

Doctors, however, should ask patients how much they want to know because some persons do not want to know all the facts about their illness. Such patients, if told the truth, deny that they ever were told, and they cannot participate in end-of-life decisions, such as the use of life-sustaining equipment. The patients who openly request that they not be given “bad news” are often those who most fear death. Physicians should deal with these fears directly, but if the patient still cannot bear to hear the truth, someone closely related to the patient must be informed.

Brain Death and Persistent Vegetative State

Brain death is associated with the loss of higher brain functions (e.g., cognition) and all brain stem function (e.g., pupillary and reflex eye movement), respiration, and gag and corneal reflexes. Determination of brain death is a generally accepted criterion for death. Some clinicians advocate an absence of brain waves on electroencephalography to confirm the diagnosis.

Persistent vegetative state is defined by the American Academy of Neurology as a condition in which there is no awareness of self or environment associated with severe neurological damage. Medical treatment provides no benefits to patients in a persistent vegetative state, and once the diagnosis is established, do not resuscitate (DNR) and do not intubate (DNI) orders can be followed and life-sustaining methods (e.g., feeding tubes, ventilators) can be removed.

Advance Directives

Advance directives are wishes and choices about medical intervention when the patient’s condition is considered terminal. Advance directives, which are legally binding in all 50 states, include three types: living will, health care proxy, and DNR and DNI orders.

Living Will.

In a living will, a patient who is mentally competent gives specific instructions that doctors must follow when the patient cannot communicate them because of illness. These instructions may include rejection of feeding tubes, artificial airways, or any other measures to prolong life.

Health Care Proxy.

Also known as durable power of attorney, the health care proxy gives another person the power to make medical decisions if the patient cannot do so. That person, also known as the surrogate, is empowered to make all decisions about terminal care on the basis of what he or she thinks the patient would want.

Do Not Resuscitate and Do Not Intubate Orders.

These orders prohibit doctors from attempting to resuscitate (DNR) or intubate (DNI) the patient who is in extremis. DNR and DNI orders are made by the patient who is competent to do so. They can be made part of the living will or expressed by the health care proxy.

Psychiatric Consultation.

Psychiatric consultation is indicated for patients who become severely anxious, suicidal, depressed, or overtly psychotic. In each instance, appropriate psychiatric medication can be prescribed to provide relief. Patients who are suicidal do not always have to be transferred to a psychiatric service. An attendant or nurse can be assigned to the patient on a 24-hour basis (one-on-one coverage). In such instances, the relationship that develops between the observer and the patient may have therapeutic overtones, especially with patients whose depression is related to a sense of abandonment. Patients who are terminal and who are at high risk for suicide are usually in pain. When pain is relieved, suicidal ideation is likely to diminish. A careful evaluation of suicide potential is required for all patients. A premorbid history of past suicide attempts is a high risk factor for suicide in terminally ill patients. In patients who become psychotic, impaired cognitive function secondary to metastatic lesions to the brain must always be considered. Such patients respond to antipsychotic medications, and psychotherapy may also be of use.

PAIN MANAGEMENT

Types of Pain

Dying patients are subject to several different kinds of pain. The distinctions are important because they call for different treatment strategies; somatic and visceral pain are responsive to opiates, whereas neuropathic and sympathetically maintained pain may require adjuvant medications in addition to opiates. Most patients with advanced cancer, for example, have more than one kind of pain and require complex treatment regimens.

Treatment of Pain

It cannot be overemphasized that pain management should be aggressive, and treatment should be multimodal. In fact, a good pain regimen may require several drugs or the same drug used in different ways and administered via different routes. For example, intravenous morphine can be supplemented by self-administered oral “rescue” doses, or a continuous epidural drip can be supplemented by bolus intravenous doses. Transdermal patches may provide baseline concentrations in patients for whom intravenous or oral intake is difficult. Patient-controlled analgesia systems for intravenous opiate administration result in better pain relief with lower amounts dispensed than in staff-administered dosing.

Opioids commonly cause delirium and hallucinations. A frequent mechanism of psychotoxicity is the accumulation of drugs or metabolites whose duration of analgesia is shorter than their plasma half-life (morphine, levorphanol [Levo-Dromoran], and methadone [Dolophine]). Use of drugs such as hydromorphone (Dilaudid), which have half-lives closer to their analgesic duration, can relieve the problem without loss of pain control. Cross-tolerance is incomplete between opiates; hence, several should be tried in any patient, with the dose lowered when switching drugs.

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