When to Tell the Patient

The issue today is not so much whether to tell patients they have a terminal illness, but rather how to share this information with them—because most patients know the nature of their disease process to some degree. Because they know their patients well, family physicians should be able to gauge patients' desire to be told and their capacity to withstand the shock of disclosure. When a terminal state of cancer is inevitable, most patients prefer to discuss such issues with their family physician rather than with their oncologist.

Patients who have end-of-life conversations with their family physician have lower health care costs during the final week of life. Better communication results in better quality of life and quality of death as well as lower cost (Zhang et al., 2009). End-of-life care is often fragmented among providers, leading to a lack of continuity of care and impeding the ability to provide high-quality, interdisciplinary care. Enhanced communication among patients, families, and providers is crucial to high-quality end-of-life care (National Institutes of Health, 2004).

A frank discussion of death or how long the patient is expected to live may not be necessary or even indicated. A good understanding between physician and patient may make open disclosure unnecessary. The physician's role may be primarily one of supporting patients during the progressive, terminal course of their illness. However, the physician who is uncomfortable with the subject of death should not use such a situation as an excuse to avoid discussing the issue. The family physician's primary responsibility is to take the time to evaluate the situation, make sure the patient's true desires have been assessed correctly, and provide whatever support is needed, based on the patient's concepts and needs rather than those of the physician (Table 5-1).

The physician who can deal with death honestly is able to focus more attention on the patient and can determine the patient's level of awareness by listening and observing nonverbal cues. Clues to the patient's wish to discuss the condition may simply be a deep sigh, a tear, or a shaky voice. The physician must be alert during busy hospital rounds for these or similar signs. The physician can pause to sit and encourage conversation if time permits, or return later when more time is available. Whenever possible, however, the response should be at that moment, because the patient is more likely to communicate freely in a spontaneous situation. Physicians who are uncomfortable in this situation may insulate themselves from the issue during hospital rounds by checking the bedside monitoring equipment, or otherwise directing attention away from the patient, effectively ignoring overt as well as subtle clues to the patient's needs.

Talking with patients about their death can be difficult, but end-of-life discussions with patients do not result in greater emotional or psychological stress. On the contrary, worse outcomes are found in those who do not have these conversations. Such discussions result in less aggressive medical care near death and earlier hospice referrals. Wright and colleagues (2008) showed that quality of life deteriorates with a greater number of aggressive end-of-life interventions and improves with longer hospice care. Patients who spend less than a week in hospice have the same quality of life as those who receive no hospice care.

When the patient is ready to discuss her or his impending death, physician and patient are probably past the most difficult stage, and the physician needs merely to listen, accept the patient's feelings, and respond to questions honestly. Most patients will raise questions that indicate how much they wish to know, provided the physician gives them the opportunity. The most supportive and facilitative act the physician can provide is to sit and ask the patient, "Do you have any questions?" When asked in a sincere manner, patients who are ready to talk about their death will take advantage of the opportunity, but they may be reluctant under other, more hurried circumstances.

Patients usually will indicate their desire to discuss their prognosis, as well as when they want to avoid the subject and focus on other topics. Even patients who fully accept their terminal process cannot remain constantly focused on that

Table 5-1 Useful Questions in Determining a Terminally Ill Patient's Needs and Wishes

• What would you like to accomplish in the time left?

• Which is your highest priority?

• What has been most difficult about this illness for you?

• How is your family (wife, husband, daughter, etc.) dealing with your illness?

• Is religion important to you?

subject and must attend to more satisfying issues. Physicians should honor and respond to this need, just as they would respond to a desire to discuss pain or other problems.

What physicians say to dying patients is not nearly as important as their willingness to listen. One of the most comforting steps physicians can take in caring for the dying is to allow them to talk about their fears, frustrations, hopes, needs, and desires. Talking about problems can be very therapeutic. Patients who are permitted to examine and discuss their feelings about death and dying are grateful for the opportunity and usually become less anxious, experience less pain, and accept their situation more easily. If they are denied this opportunity, especially when the terminal process is obvious, they may be convinced that the time remaining is too terrible to be discussed, and their anxiety will be significantly increased. Often, terminally ill patients are more fearful of the manner in which death will occur (e.g., painful, alone and abandoned, weak and helpless) than they are of death itself.

Do all patients want to be told of their fatal illness, however? Surveys indicate that 80% to 90% of patients say they wish to be told, whereas many physicians prefer not to tell a patient that he or she is dying. Ward (1974) found that family physicians are more likely to discuss a fatal diagnosis with women than with men (22% vs. 7.5%) and more often with patients in the upper social class than the lower social class (24% vs. 5% for men; 30% vs. 26% for women). Many physicians who state that they theoretically believe in telling the patient of the terminal nature of the illness employ evasion in their actual practice as often as most other physicians. Because of this reluctance, which may be based on discomfort with the issue emanating from intensive conditioning to preserve health and maintain life, future medical students must be trained more adequately in assisting patients with the process of living just before death.

Most physicians will tell a patient that he or she has terminal cancer if the patient asks a direct question, but otherwise will evade the issue and discuss it openly only with the family. In many cases this is the most appropriate course of action; some patients clearly indicate that they cannot and do not wish to face the fact that they have an incurable disease. It is essential, however, that the physician evaluate the true nature of the patient's desire in the matter and neither avoid the issue when the patient wishes to discuss it nor force a discussion on an unwilling individual. "When the task of telling a patient about an onerous diagnosis is too easy, the doctor has become callous. When it is too difficult, he needs to examine his own guilt or anxiety" (Weisman and Brettell, 1978, p. 251).

Patients should be given adequate time to absorb the knowledge of the terminal nature of their illness and the opportunity to react appropriately before death intervenes. This is not possible if the physician procrastinates or rationalizes that it is better not to inform the patient. The process should not be allowed to advance to such a final a stage that inadequate time remains for individuals to react appropriately and put their affairs in order.

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