Bethesda Handbook of Clinical Oncology, 2nd Edition

Supportive Care

42

End-of-life Care

Jane Carter

National Cancer Institute, National Institutes of Health, Bethesda, Maryland

When disease reaches its terminal stage, the goal of treatment ceases to be a cure or an extension of life. Rather, there is an awareness of the futility of further treatment, and focus of care shifts to one of palliation of symptoms and relief from suffering, so as to enhance the quality of remaining life for the patient and the family. Such care can be given by a hospice agency in the patient's home or by the oncologic team in a hospice or acute care setting. The key to what is called a “good death” in the hospice movement is a holistic approach that embraces care in four dimensions: physical, emotional, spiritual, and social.

COMMUNICATION

Patients will often know intuitively when a transition is reached. They may not voice awareness of the shift, especially if they sense an unwillingness of physicians, nurses, or family members to explore their thoughts and feelings. Open and honest communications between the physician and patient, as death approaches, help ease the patient's fears, relieve anxiety, and prepare the patient for death (1).

THE “GOOD DEATH”

Patients' end-of-life needs are multifaceted, but it is only control of the physical symptoms that is uniquely medical (2) and consists of

• the need to have adequate relief of pain
• the need to have ongoing assessment and prompt relief of discomfort arising from distressing symptoms
• the need to be cared for by physicians and nurses who have a positive attitude toward palliative care
• the need to be allowed a measure of control over decisions, the need for respect for their stated wishes as put forth in advance directives, and the need to have the quality of life they choose
• the need to have a trusting relationship with their physician that permits open, truthful communication (3).

PALLIATIVE CARE MEASURES

“Skilled physical symptom control is the linchpin of good hospice and palliative care … without which the many psychological, social and spiritual needs of the patient and family cannot be met” (4).

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Pain

In the early days of the contemporary hospice movement, in the late 1960s, its founder, Dr. Cicely Saunders, identified the failure of medicine to control cancer pain. Pain continues to be the most important, feared, and undertreated symptom in patients with end-stage cancer. It has many dimensions and is often described as “total pain” (5).

• The key to effective pain control is constant assessment and modification until relief is obtained, using the World Health Organization (WHO) three-step analgesic ladder.
• Morphine is the strong opioid of choice and should be titrated to a level that provides relief.
• The appropriate dose is the amount of opioid that controls pain with the fewest side effects (6).
• Complementary measures such as guided imagery, acupuncture, and massage can be effective in palliation of pain and other distressing symptoms.

Other Symptoms

Other symptoms that arise in the course of dying should be addressed as they occur, keeping in mind the underlying principle of promoting comfort (care) rather than prolonging life (cure). Optimal interventions for all symptoms will be ones that have minimal negative impact on quality of life.

• Making decisions that unnecessarily burden the dying patient should be avoided.
• Symptoms should be assessed and treated quickly.
• Orders that do not specifically enhance comfort should be avoided:
• Monitoring of vital signs
• Elaborate testing and diagnostic procedures
• Gathering of blood and other body fluids for laboratory analysis
• Medications other than those that relieve symptoms.

Medications

• The oral route of administration should be used as long as it is viable.
• When swallowing is no longer possible, or if gastrointestinal (GI) absorption is in question, an alternative route should be attempted:
• transdermal
• sublingual
• subcutaneous or
• rectal/vaginal.

Administration of sedatives and other essential drugs can be intravenous only if such access is readily available. The goal is to use the least invasive means possible to provide the maximum benefit.

Hydration and Nutrition

Hydration and nutrition are among the most disputed areas of terminal care, in which personal values and religious beliefs may conflict with accepted medical knowledge. A natural stage in dying occurs when the patient ceases to eat or drink. Although appetite has diminished gradually over many days or even weeks, as death approaches, the patient may refuse all food and oral fluids. It is at this point that physicians, sometimes at the insistance of well-meaning family members, will consider ordering intravenous hydration and/or insertion of a tube for enteral nutrition.

• Terminally ill patients do not need invasive nutritional support.
• Such support will not prolong life or reverse weight loss or weakness, or make the person feel stronger (4).

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• Feeding tubes and intravenous lines have the effect of increasing the emotional distance between the patient and family.
• Hunger is rarely a source of discomfort. Some literature suggests that reduced food intake can produce a euphoric feeling such as one experienced by a healthy person who is fasting.

Similarly, hydration by artificial means may exacerbate discomfort and should be used only when the patient complains of thirst and is unable to drink. Dehydration in the terminal phase decreases pulmonary secretions that increase dyspnea; decreases urine output, which minimizes incontinence; and minimizes the possibility of vomiting.

Altered Mental Status and Terminal Restlessness

“Nearing death” experiences can be observed to be remarkably similar among dying patients in which the person in the final minutes or hours before death appears to be “seeing” into another dimension beyond earthly life (1). This is usually brief and transitory just before the patient lapses into the final unconsciousness. Should the patient become physically agitated and distressed to the point of attempting to climb out of bed, or if agitation is prolonged and is causing dyspnea, adequate sedation should be given to ease the anguish. It is important at this point that careful discussion takes place with family members for them to understand that this agitation is a terminal event, part of the illness, probably because of profound hypoxia, requiring sedation, and is not emotional distress or a sign of lack of readiness to die (4).

Family Needs as Death Approaches

The patients' families will need close contact and communication with the physician and nurses as death approaches. Practitioners must guide families through this difficult time with empathy and with the wisdom of experience. Each death experience will be unique because the individuals' coping strategies and experiences with death and their attachment to the dying person will affect their response. It is incumbent on the professional at the bedside to meet them at whatever level they are experiencing the death.

The most frequently asked question, “How long will it be?” can be best answered by a simple explanation of the significance of signs as they appear: changes in breathing, changes of skin color, weakening of pulses, and such signs. Simple explanations can guide the family in deciding when it is time to come together for the last time to say good-bye if they so desire.

REFERENCES

1. Kubler-Ross E. On death and dying. New York: Macmillan, 1969.
2. Byock I. Dying well. New York: Riverhead Books, 1997.
3. Nuland SB. How we die. New York: Knopf, 1994.
4. Kaye P. Notes on symptom control in hospice and palliative care. Essex, CT: Education Institute, 1992.
5. Rossman P. Hospice. New York: Fawcett Columbine, 1979.
6. U.S. Department of Health and Human Services. Management of cancer pain: adults. Rockville, MD: Agency for Health Care Policy and Research, AHCPR Publication No. 94-0593, 1994.