Like all good medical care, palliative care addresses patients’ needs at many levels. The physical deterioration as death approaches can challenge the ingenuity and equanimity of health care professionals [see CE:IX Palliative Medicine and CE:X Symptom Management in Palliative Medicine]. Yet symptom management is only one aspect of the care that these patients need; the psychosocial and spiritual problems that arise at the end of life also require attention.
A fatal illness—such as untreatable heart disease, terminal cancer, or AIDS—brings with it not only physical pain but also emotional suffering. Fear is prominent. The body, once regarded as a friend, may seem more like a dormant adversary programmed for betrayal. Even innocuous bodily changes may be interpreted as ominous. Patients become fearful before disease symptoms occur. Cancer patients, for example, fear pain, shortness of breath, nausea and vomiting, anorexia, dyspnea, and iso-lation.1 Well before the terminal stages of an illness, patients fear the unknown, losing autonomy, disfigurement, dementia, and, last but not least, becoming a burden to their families.
The stress of terminal illness may manifest itself in many ways. Patients may deny or be unable to accept diagnosis or treatment; they may have unrealistic hopes of being cured, and they may persistently ask why there is no improvement. They may express anxiety, often extreme, with near panic and unspecified fears about dying. They may experience intense feelings of ambivalence and guilt regarding their personal relationships.
Considering the severe distress that is frequently involved, it is remarkable how well most patients do cope with a terminal illness and its treatments. The unique set of coping mechanisms that they have used to maintain self-esteem and stability in the past plays a vital role in this process. Religion and spirituality may be most helpful to patients and families at the end of a patient’s life and should therefore be recognized and encouraged.
When a patient is dying, the entire family is the appropriate focus of treatment. A family member may be the first to notice a symptom, such as a personality change, in the patient or in another family member and can thus serve as an indispensable historian. The physician must also contend with the psychosocial forces that can lead to family fragmentation and interfere with care. A family member may have more difficulty than the patient in coping with the illness; this may irritate and distract caregivers and ultimately disrupt the relationship between the physician and the family. For example, the physician may be inclined to schedule visits to the patient so as to avoid encounters with the family. This could seriously jeopardize the patient’s treatment and the chance to make the patient’s death meaningful and dignified. After the patient’s death, the survivors may experience abnormal grieving patterns that deserve medical attention.
Most of the psychosocial aspects of palliative care are within the capability of the primary care physician. In some cases, however, psychiatric consultation may be necessary to help the dying patient cope with major depression, personality disorders, continuous treatment-resistant pain, substance abuse, or grieving.
Preliminary Considerations
Breaking Bad News
Psychosocial care of the patient with terminal illness begins with delivery of the diagnosis. Because there are so many possible reactions a patient may have when informed of the diagnosis, it is helpful to have some plan of action in mind that will permit the greatest range and freedom of response by the patient. Guidelines have been developed for communicating bad news.2 When the diagnosis is made and it is time to inform the patient, the physician should meet with the patient in a private place. The spouse (and sometimes the family) should be included in the discussion, unless there is a good reason not to do so. If possible, the patient should be informed ahead of time that after all the tests are completed the physician will review the results and discuss treatment plans in detail. With inpatients, the physician should sit down at the bedside to deliver bad news. Standing while conveying bad news may be regarded by a patient as unkind and expressive of wanting to leave as quickly as possible. If the patient is tested as an outpatient and returns home before the results are known, he or she should be told that the diagnostic information is too important to convey by phone, and a meeting to discuss the results should be arranged. Relaying bad news by phone may be perceived by patients as thoughtless, even though they may have asked for information. A physician must also be prepared to respond to a patient who wishes no or minimal information about the diagnosis.
When the findings are life threatening (e.g., a biopsy positive for malignancy), how can the news best be conveyed? A good opening statement is one that is (1) rehearsed so that it can be delivered calmly, (2) brief (three sentences or less), (3) designed to encourage further dialogue, and (4) reassuring of continued attention and care. A typical delivery might go as follows: "The tests confirmed that your tumor is malignant. I have therefore asked the surgeon (or radiotherapist or oncologist) to speak with you, examine you, and make recommendations for treatment. After this, we can discuss how we should proceed." Silence and quiet observation at this point will yield more valuable information about the patient than any other part of the exchange. What are the emotional reactions? What sort of coping is seen at the very start? While observing, one can decide how best to continue with the discussion. Just sitting with the patient for a period of time, however, is the most important part of this initial encounter with a grim reality that both patient and physician will continue to confront together, possibly for a long time.
Telling The Truth
Given the difficulties that can follow the disclosure of a life-threatening illness, it may be tempting to avoid telling the patient the diagnosis. This tactic has ancient roots: Hippocrates himself recommended concealing bad news from patients, lest they become discouraged.3 Nevertheless, most empirical studies in which patients were asked whether they wanted to be told the truth about malignancy have indicated an overwhelming desire in the affirmative. Of 740 patients in a cancer-detection clinic who were asked before diagnosis whether they wanted to be told their diagnosis, 99% said that they did.4 Another group of patients in this clinic were asked the same question after the diagnosis was established, and 89% of them replied affirmatively, as did 82% of patients in still another group who had been examined and found to be free of malignancy.
Truth telling entails eliciting the patient’s concerns. Studies indicate the clinician’s use of specific communication skills enhances a patient’s disclosure of his or her concerns.5 Such communications skills include making eye contact with the patient, asking open-ended questions, responding to the patient’s affect, and demonstrating empathy. The desire for truth telling may vary among different ethnic groups.6 In a study of elderly persons in the United States, Korean Americans and Mexican Americans were less likely than African Americans and European Americans to believe that a patient should be told the diagnosis of metastatic cancer.7 However, a population study in Hong Kong reported that the majority of persons canvassed would want to know if they had terminal cancer; this finding is at odds with the cultural preference of many Chinese, who usually prefer to withhold diagnostic information from terminally ill family members.8 This study emphasizes that cultural preferences give only general indications of a patient’s readiness to hear bad news; truth telling ultimately depends on the physician’s assessment of what the patient wants to know and is prepared to know about the diagnosis. Socioeconomic factors may also be involved in a patient’s willingness to hear bad news: younger age and higher income and education make patients more likely to want detailed diagnostic information.9
Is the truth harmful? Gerle and colleagues10 studied 101 patients who were divided into two groups, with one group, along with their families, being told the frank truth of their diagnoses and the other group being excluded from discussion of the diagnosis (although the patients’ families were informed). Initially, there appeared to be greater emotional upset in the group of patients and families who were informed together. The investigators observed in follow-up, however, that the emotional difficulties of the families of the patients who were shielded from the truth far outweighed those of the patients and families that were told the diagnosis simultaneously. In general, empirical studies support the idea that the truth about the diagnosis is desired by terminally ill patients and does not harm those to whom it is told. Honesty sustains the relationship with a dying person rather than jeopardizing it.11 Individual variations in willingness to hear the initial diagnosis are extreme, however, and diagnosis is entirely different from prognosis. Many patients have said that they were grateful to their physician for telling them they had a malignancy. Very few, however, reacted positively to being told that they were dying. In our experience, "Do I have cancer?" is a common question, whereas "Am I dying?" is a rare one. The question about dying is more commonly heard from patients who are dying rapidly, such as those in cardiogenic shock.
Honest communication of the diagnosis by no means precludes later avoidance or even denial of the truth of the diagnosis. In two studies, patients who had been explicitly told their diagnosis (using the words cancer or malignancy) were asked 3 weeks later what they had been told: in both studies, about 20% of the patients sampled denied that their condition was cancerous or malignant.12,13 Croog and colleagues14 interviewed 345 men 3 weeks after myocardial infarction; 20% of those patients said they had not had a heart attack. All had been explicitly told their diagnosis. For a person to function effectively, truth’s piercing voice may be muted or even excluded from awareness. Denial can reduce psychological distress, and preliminary evidence suggests that in women with nonmetastatic breast cancer, it may be associated with prolonged survival.15 However, information-seeking behavior and fighting spirit have been more consistently associated with higher rates of recurrence-free survival 5 and 10 years after diagnosis of breast cancer.16,17 Communicating a diagnosis honestly, though difficult, is easier than the labors that lie ahead. Telling the truth is merely a way to begin, but it provides a firm basis on which to build a relationship of trust.
Communicating With The Patient
The most important component of communication is listening. The real issue is not what you tell your patients but, rather, what you let your patients tell you.1 Most people are afraid to let dying patients say what is on their minds. If a patient who is presumed to be 3 months from death says, "My plan was to buy a new car in 6 months, but I guess I won’t have to worry about that now," a poor listener might say nothing or, "Right. Don’t worry about it." A better listener might ask, "What kind of car were you thinking about?" In a study of 126 patients with incurable cancer, 98% wanted their physicians to be realistic about their health status, to provide an opportunity to ask questions, and to acknowledge them as an individual when discussing prognosis.18
It is essential to get to know the patient as a person. The best way to recognize and acknowledge the person’s worth is to learn those features of his or her history and nature that make him or her unique. Encourage dying persons to tell their stories. Learn about significant areas of the patient’s life—such as family, work, or school—and chat about common interests. This is the most natural way to give the patient the sense that she or he is known and appreciated.
Patients occasionally complain about professionals and visitors who regard them as "the dying patient," not as a unique person. The physician can help dissolve communication barriers for staff members by showing them the remarkable qualities of each patient. Comments such as, "She has 34 grandchildren," or, "This woman was an Olympic sprinter," convey information that helps other members of the health care team appreciate their patient and to find something to talk about with them. Listen for the patient’s own conversational cues whenever possible. Awkwardness subsides when a patient is appreciated as a real person and not merely "a breast cancer patient." This rescue from anonymity is essential to prevent a sense of isolation. The most important communication is often not verbal. A pat on the arm, a wave, a wink, or a grin communicates important reassurances. Back rubs and physical examinations can also be an opportunity to convey reassurance.
Psychosocial Support during Terminal Illness
The diagnosis of a terminal illness impacts the patient’s relationships with family, friends, and coworkers and can thus undermine the patient’s sense of self. Although death is a natural part of life, the adjustment to diminished function and role in relationships can be stressful, both for the patient and the patient’s family.
Family and Friends
Family members and friends must be helped to support the patient and one another. To provide this help, the physician must get to know both the patient and the family members. When patients are permitted to give support to their families, they often feel they are less of a burden.
One must appreciate the fact that for family and close friends, a fatal illness of a loved one may be the only event important enough to resolve long-standing conflicts. Peacemaking should be a priority. Specific plans for the family are important. The writing of wills, the clarification of family history, the review of memorable family gatherings and achievements, the carrying out of such family projects as trips or photo-album reviews, and planning a funeral or memorial service are all important activities.
The care of a dying person can be a process of mutual growth for the patient and the family. Just as the deterioration of a person with a fatal disease can be threatening (family members may feel both horrified at the prospect of the same thing happening to them and helpless to assist), the response of the dying person to the challenge may be not only edifying but also an invaluable lesson in coping. Indeed, family members who act as caregivers report strong positive emotions regarding the opportunity to express their love through care. Those caregivers may experience extreme grief after the patient’s death, however, and may require special support and attention from health care providers at that time.19
Near the end of life, a patient may be too weak to communicate by speech, and sometimes, consciousness itself may be difficult to assess. Most patients who have lost the ability to communicate have a period when they can still hear or perceive those in attendance. Family feelings of helplessness can be minimized by reading especially meaningful passages to the dying person (e.g., the daily headlines, articles by favorite authors or columnists, poetry, passages from the Bible, the Dow-Jones average, sports scores, and letters new and old). Conversations should make natural reference to the person as though hearing and understanding were intact. Singing favorite songs, playing favorite music, or praying aloud may increase the sense of unity and purpose for the family. Although the patient may never be able to tell us how important that time is, an occasional incident will do so dramatically, as when a supposedly unconscious person suddenly smiles appropriately, gestures, or even speaks. Often, this conveys gratitude for the attention given to him or her, which is very rewarding for the loved ones in attendance.
The end of life is an opportunity to educate the younger generation. Whenever possible, children should be included in all the planning, meetings, discussions, activities, and care, as well as the final attendance at death. Children can learn that death need not be violent or terrifying and that we face our losses best when we face them together.
Investigators have consistently learned that the visits of children are as likely as any other intervention to bring consolation and relief to the terminally ill patient. How can one determine whether a particular child should visit a dying patient? No better approach has been found than asking the child directly whether he or she wants to visit.
Ideally, this mutual work at the end of life will confirm the dying person’s sense of self. It also can give family, friends, and caregivers the wonderful feeling that they have provided good care and safe passage.
Occupation and Work
Work is critical for the self-esteem of many people. Many people begin to feel less valuable when work ceases or they retire, and the approaching end of life may intensify a sense of failure. The continuation of work for as long as feasible, as well as continued contact with work colleagues, can remind the dying of who they are and what they have accomplished. It encourages the belief that they are remembered and respected, regardless of their illness. Similarly, continued involvement in recreational activities can be very satisfying.
Near the end of life, a person is often too disabled to get around or to contact colleagues and friends. Wherever possible, such contact should be arranged for and encouraged.
Religion and Spirituality
Studies find that people who have a strong internalized faith possess a resource that helps significantly in coping with a fatal illness.1,20-23 It is a well-documented finding that religious persons usually belong to a community that can be unusually thoughtful and generous in providing support. However, the community may not know of the patient’s plight and may need to be contacted. Thus, the appreciation of a person’s religion or spirituality is extremely important.
The Physician’s Psychological Role in Patient Care
The first responsibility of the caregiver, as Saunders24 points out, is "above all to listen." A suffering person often wants to communicate just how awful a fatal illness is. Words from the caregiver may be irrelevant: "When no answers exist," says Saunders, "one can offer silent attention."
It is important to be aware of the impact that patients’ feelings can have on one’s own mood and the amount of time spent with the patient. The relentless approach of death from cancer or AIDS may leave a patient with feelings of terror, hopelessness, and despair. Those feelings tend to be contagious, intensifying our feelings of impotence. A caregiver’s own helplessness and despair may result in neglect or avoidance of the patient or feelings that the patient would be better off dead. Sensing that a patient is burdensome to caregivers can be devastating to the patient who looks to a doctor or nurse for some sense of hope.25 In one study of terminal cancer patients, the majority of patients (87%) indicated that seeing their physician nervous or uncomfortable in their presence did not promote hope.16 Thus, it is of the utmost importance that caregivers remain empathetic and reassure patients that they will continue to be there for them at all stages of their illness and that caregivers learn to live with negative feelings and resist the urge to avoid certain patients— attitudes that could convey that care of a patient is difficult for us or that the patient no longer matters to us.
Compassion
Of all attributes in physicians and nurses, none is more highly valued by terminally ill patients than compassion. Although they may never convey it precisely by words, some physicians and nurses are able to tell the patient that they are genuinely touched by his or her predicament. Although universally praised as a quality for a health professional, compassion exacts a cost that is usually overlooked in professional training. This cost is conveyed by its two Latin roots: com, meaning with, and passio, from pati, meaning to suffer—that is, to suffer with another person. It is important for caregivers to have a source of support for themselves—such as colleagues, friends, and family—so that they can continue to be there for their patients.26
Cheerfulness
The possessor of a gentle and appropriate sense of humor can bring relief to all parties involved. Often, patients provide this, and their wit may soften many a difficult incident. Humor needs to be used sensitively, however: forced or inappropriate mirth with a sick person can increase feelings of distance and isolation.
Consistency and Perseverance
Dying patients have a realistic fear of progressive isolation. The physician or nurse who regularly visits the sickroom provides tangible proof of continued support and concern. A brief visit is far better than no visit at all; the patient may not even be able to tolerate a prolonged visit. Do continue to visit: patients are quick to identify those who show interest at first but gradually disappear from the scene. Stay the course even if this means that you must listen to repeated or irrelevant complaints.
The Patient’s Psychological Response to Terminal Illness
Any serious illness inflicts some loss on the patient. A diagnosis itself, with no change in subjective symptoms, can cause a feeling of loss, as concepts of self and plans for the future are swept away.
The emotional reactions to a myocardial infarction serve as a model for the reactions of a person who has experienced physical loss. In a series of 149 coronary patients whose emotional difficulties were severe enough to warrant psychiatric consultation, the majority of problems during the first 2 days stemmed from fear and anxiety. These patients generally showed a sequence of emotions beginning with anxiety, followed shortly thereafter by denial (at this stage, a few wanted to sign out of the hospital) and then by despondency, which sometimes persisted. A final group of management problems, related mostly to dependency or personality disorders, rounded out the sequence.27
In essence, this reaction pattern suggests that the most common difficulty for a patient immediately after admission is fear. The patient fears imminent death, the presence or return of pain or breathlessness, or some vague but ominous threat to well-being. As symptoms stabilize or subside, the patient is likely to imagine that admission symptoms were false alarms and, in some cases, to insist on signing out of the hospital. When the diagnostic tests confirm the presence of myocardial infarction, however, the patient is confronted with the reality of the illness and feels demoralized. As hospitalization continues, any personality flaws (e.g., passive aggression) further complicate interactions between the patient and the hospital personnel. The sequence of acute onset of illness, fear, stabilization, denial, confirmation of illness, and depression provides a convenient framework for assessing the mental state of an individual hospitalized for any serious illness.
Fear
Anxiety and despondency are the most common emotional reactions to illness. Panic distorts personality as nothing else does. Yet fear assumes many guises. If a patient seems impossible to deal with on the first day of hospitalization, the reason very likely is underlying fright. However, if difficult behavior continues after 4 or 5 days in the absence of new events that are frightening, it is probably because of the patient’s personal style. Excessive talkativeness or mute withdrawal is a typical sign of fear in the acute phase.
Medication, quiet reassurance, or both can relieve a patient’s fear and anxiety. Minor tranquilizers are the agents most commonly employed, but explanation and reassurance can be even more effective than medication.
When the physician senses that the patient is afraid, it is safe to assume that the patient regards the illness as an overwhelming threat to well-being. This threat is based on what the patient already knows or presumes about the disease. The physician, therefore, may ask questions designed to uncover erroneous concepts about the patient’s condition, such as, "Have you ever known anyone with this disease?" or, "What is your notion of this disease?" If any family member has died of the disease, his or her age at death may also contribute heavily to the patient’s fear of the same fate.
After false notions have been corrected, it is important to emphasize the positive aspects of the treatment plan. Even when the prognosis is grave, a calm statement of the treatments planned to counteract and contain the disorder is of value to the anxious patient. The more ominous the prognosis, the more important it is to encourage the patient to specify the fear, so that correspondingly true reassurances (e.g., "the medication can control pain") can be given. False comfort is not recommended. It robs the physician of credibility and, therefore, of the ability to reassure the patient as the illness progresses. An empathetic yet silent presence can sometimes be more helpful than well-meant counsel.28
Denial and Panic
Denial is a common defense mechanism in the initial stage of life-threatening illness. The ability to minimize or to completely deny the threatening implications of the disease ("There’s nothing to worry about; I’ll be all right.") is essential for controlling panic. When panic sets in, denial fails and people want to flee. Panic is the most common reason why acutely sick patients sign out of a hospital. Although it may simply mean that the patient does not take his or her illness seriously enough, the threat to sign out should be considered a panic reaction. The patient’s panic conviction is, "I’ll die if I don’t get out of here."
Because patients who are experiencing a panic reaction are feeling desperate, they may become antagonistic to efforts to detain them. A gentle approach is essential. For example, the doctor, seated if possible, may begin with "Mr. Jordan, I’m not here to force you to do anything; I just ask that you hear me out." Then the patient needs to hear the truth—that he is seriously ill—expressed in direct but reassuring terms. To quiet the panic, it is most important to explain that the illness is manageable. As the patient calms down, other questions designed to reduce fear can be asked. Even if calmed, however, an anxious patient will not remain calm for long and should be promptly medicated. Family members should also be mobilized and informed.
Anxiety
Anxiety disorders may or may not intensify during a terminal illness, but they clearly require psychiatric attention when they do. The four most common anxiety-provoking fears associated with death are (1) helplessness or loss of control, (2) being considered bad (guilt and punishment), (3) physical injury or symbolic injury (castration), and (4) abandonment.29
In the clinical examination, a severely anxious patient usually does not know what it is about death that is so frightening. Increased anxiety may result from specific memories and associations related to the death of parents or others with whom one identifies; patients may picture the same fate for themselves (e.g., agonizing pain or excessive use of technology). Memories of someone who died of the same illness (e.g., a woman with breast cancer who had relatives who died of breast cancer or a patient with AIDS who tended to a lover dying of AIDS) or particular associations with the illness may produce specific reasons for anxiety (e.g., the disease will be disfiguring). For the sake of the patient’s mental health, it is important to explore these issues.
Pharmacologic therapy with an antidepressant such as a selective serotonin reuptake inhibitor (SSRI) or benzodiazepine may be warranted for patients with moderate levels of anxiety. The effect of benzodiazepine is immediate, whereas the therapeutic effect of an SSRI is delayed, occurring 2 weeks after initiation of treatment. Benzodiazepines (e.g., lorazepam and clonazepam) are therefore the preferred class of drug. Lorazepam (0.5 to 2 mg, given orally two to four times a day) peaks in 1 to 6 hours and is available in tablet, elixir, sublingual, rectal, or I.V. formulations. Clonazepam (0.25 to 0.5 mg, given orally two to four times a day) has a slightly longer half-life; it is available in tablet formulation. Patients who have anxiety in the setting of dyspnea respond well to morphine [see CE:X Symptom Management in Palliative Medicine].30If psychotic symptoms accompany anxiety, a neuroleptic agent such as haloperidol (0.5 to 5 mg, given orally, I.V., or S.C. every 2 to 12 hours) is helpful.
