Care of the Dying Patient

Chapter 5 Care of the Dying Patient

Robert E. Rakel, Elizabeth M. Strauch

Chapter contents

The Physician’s Attitude 54

The “Right Time” to Die 54

Communication 55

When to Tell the Patient 55

How to Tell the Patient 56

Prognosticating 57

Conspiracy of Silence 57

“Watch with Me” 58

Patient Control 58

The Importance of Hope 59

Discussing Religious and Spiritual Issues 59

Prolonging Living or Prolonging Dying? 59

Management of Symptoms 59

Pain Contro l60

Visceral Pain and Smooth Muscle Spasm 65

Anxiety and Depression 65

Constipation 66

Nausea and Vomiting 67

Subcutaneous Route 67

Nutrition 67

Where to Die 68

Hospice Care 68

Support for the Family 69

Selecting a Hospice 69

Advance Directives 69

Medical education and our professional attitude regarding patient care are oriented primarily toward sustaining life and curing disease. This is reasonable, because not long ago the major causes of death were the infectious diseases, which usually attacked young people, who died before experiencing life. With the advent of antibiotics, it was possible to triumph over these diseases and prevent untimely death. Patients had a high probability of complete recovery. It is no surprise, therefore, that the medical profession emphasized preserving life at all costs and became preoccupied with the advancing technology that made such triumphs possible. Today, people no longer die of acute illness, but rather from chronic disease for which there is no cure. This calls for medicine to focus on improving the quality rather than the quantity of life and to recognize that the relief of suffering is superior to attempts to cure when there is limited likelihood of success. Patients with chronic diseases and those who are terminally ill will benefit most from supportive therapy.

In previous centuries, it was assumed that life should be lived so that one would be able to “die well,” but contemporary American culture has refused to accept death as a normal occurrence. Children and young adults have been conditioned to consider death from the viewpoint of the observer or disinterested third party. An individual’s attitude toward his or her own death depends largely on experiences in dealing with the deaths of relatives or friends. Rather than a time of despair, sickness may be used as an opportunity for reflection. For some patients, it may be the first time they have faced their own mortality. Too often, however, this natural personal encounter has been depersonalized by removing the dying patient to an institutional setting.

Care of a terminally ill patient typically focuses on the disease, neglecting the patient as a whole person. The value of treatment must be interpreted on the basis of its net value to the individual. When additional treatments no longer provide benefits, the patient needs someone who provides personalized care with attention to the patient’s emotional as well as physical comfort. The dying person often is isolated physically and emotionally from familiar surroundings and placed in a social setting that gives very low priority to an individual’s personality, fears, and past experiences. Informed physicians, family, and friends can do much to help the terminal patient die with integrity and with dignity. However, if dying is really to be accepted as a normal component of the life cycle, reintegration of the dying patient into the routine course of living is necessary.

The concept of quality care does not always demand that death be regarded as an enemy to be fought with every weapon at a physician’s disposal. An obsession with quantity of life can adversely affect its quality; at times, a graceful death with dignity is preferable to lingering torment (LORAN Commission, 1989, p. 27). Many people consider quality of life more important than quantity and want to leave while they still have something to say about it. Today, it is possible to keep people alive indefinitely, often without consideration for the quality of life.

The Physician’s Attitude

Less than 10% of people die suddenly, whereas more than 90% experience a protracted life-threatening illness (Emanuel et al., 2003). Terminal illness is more taxing on the physician than sudden and unexpected death. Not surprisingly, an empathic family physician with a long patient relationship may be uncomfortable in dealing with the patient’s impending death. Physicians are most uncomfortable when they feel helpless. Unfortunately, this leads to withdrawal from the patient who is terminally ill, because the physician inappropriately feels helpless and impotent, when in fact a great deal of comfort and help can be provided.

While expressing concern and compassion for a terminal patient, the family physician still must maintain composure and objectivity to remain effective. Osler (1904) referred to this as “calm equanimity” and added, “Our equanimity is chiefly exercised in enabling us to bear with composure the misfortunes of our neighbors” (p. 8). Medicine long has emphasized the need for physicians to remain objective and deal with problems factually; if a physician is unable to do so effectively, attempts to hide emotion may lead the physician to adopt a facade that appears unsympathetic and insensitive to the patient’s needs. A son reported that “with the worsening of my father’s condition, the physician stopped being friendly and warm; his visits became rare and brief; his manner became quite detached, almost angry” (Seravalli, 1988, p. 1729).

Physicians sometimes lose enthusiasm for care once an illness has been recognized as incurable. If this occurs, interaction with the patient diminishes at the very time emotional support is needed most. Time-motion studies indicate that nurses and other ward personnel also spend less time with the terminally ill patient when giving baths and providing routine care. Using videotape surveillance of terminally ill patients’ rooms in a university hospital, Sulmasy and Rahn (2001) found that the average patient spent more than 10 hours alone while awake per day. Since abandonment is a major fear of terminally ill patients, we must remain aware of the need to reduce the time patients spend without human interaction by physicians, nurses, or family.

Compassion fatigue is a form of emotional exhaustion and diminished empathy more common in health professionals caring for dying patients. Symptoms parallel those of posttraumatic stress disorder (PTSD), that is, hyperarousal, in the form of disturbed sleep and irritability, avoidance of the patient, and intrusive thoughts or dreams relating to the provider’s work with dying patients (Kearney et al., 2009).

During the terminal stages of a fatal illness, it is vital to the dying patient that the family physician maintain a warm and caring relationship and, through the strength of the doctor-patient bond, provide support for the patient.

The physician who is uncomfortable discussing impending death can discourage conversation in many subtle ways. Hospital rounds are made rapidly, perhaps in a superficial, lighthearted manner, never pausing long enough to give the patient an opportunity to express fears and concerns. Comments such as “everything will be all right” effectively close lines of communication with an intelligent patient who is fully aware of the seriousness of the situation. When the physician tells a patient, “Don’t worry,” the patient interprets this as, “Don’t bother me.” Patients are unlikely to initiate discussions regarding their fears of death or feelings of helplessness under such circumstances and will remain silent or will avoid these issues unless they think the physician is interested and will listen. The physician easily can squelch such conversation, but a slight indication of willingness to discuss the problems disturbing the patient often results in frank conversations, which relieve much of the patient’s anxiety and reveal concerns that can be shared only with the physician.

The “Right Time” to Die

Simpson (1976) described the “how dare you die on me” syndrome, in which the patient has the “effrontery” to die before medical and nursing staff have used all the treatments in their repertoire. The patient is supposed to die “at the right time”—neither before all potential effective therapies have been tried nor too long after all palliative procedures have been utilized. Health professionals often need to feel that everything possible was done for the patient before death. These attitudes have developed because the health care process too often focuses more on professional expectations than patient needs.

We might consider what we have done to the patient who dies in the isolation of a laminar flow room, without having been able to touch another person’s hand during his last few weeks of life. Such treatment is a false-positive, a treatment inappropriate to the real needs of the patient (Saunders, 1976).

However, it is impossible for physicians to provide adequate support during this difficult time unless they have come to grips with their own mortality. Studies by the Group for the Advancement of Psychiatry have revealed that physicians are afraid of death in greater proportion than patient controls (Aring, 1971). What better defense against death than to make one’s full-time vocation fighting it?

Patients are often more willing to accept death than the physicians who treat them, and many fear that they will receive more aggressive treatment than they want. Based on interviews with seriously ill patients, 60% preferred that treatment focus on comfort, even if it meant shortening their lives. The other 40% wanted life-extending care. Of those preferring comfort care, only 41% reported that treatment matched their wishes (Teno et al., 2002). In another study, more than half of physicians interviewed admitted they had provided overly aggressive care to patients (Solomon et al., 1993).

Many if not most patients will choose toxic chemotherapy, even if there is only a slight chance of cure, or even if it would prolong their life by only a few months. The concern is that they may choose this route on the advice of their physician, even though they will be miserable for those remaining months. It is important to have a straightforward discussion with the patient about the quality and quantity of life with and without chemotherapy. More than 20% of Medicare patients with metastatic cancer had a new chemotherapy treatment regimen started in the 2 weeks before death (Earle et al., 2004).

Unfortunately, chemotherapy is better compensated than are discussions as to its need and potential side effects. It is no surprise that oncologists prefer third- or fourth-line chemotherapy to discussing hospice care. One patient received intrathecal chemotherapy 6 days before his death at a cost of $3400 (Harrington and Smith, 2008).

Communication

• Abandonment is a major fear of dying patients, who spend an average of 10 awake hours alone per day.

• Listening and allowing patients to express their fears and concerns is of great therapeutic benefit.

• Touch and sitting with the patient convey support and compassion.

• Frequent assessment of the patient and family’s desire for information must be accompanied by honest answers.

• Patients should be allowed as much control as possible to avoid fear of the unknown.

• When cure is not possible, much benefit can be derived from attention to daily symptom control.

• Avoid giving false hope, but remember that hope and humor can be therapeutic.

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).

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

• What do you fear most?

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

• Which is your highest priority?

• How can I help you achieve this?

• 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?

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 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.

How to Tell the Patient

There is no need to answer questions the patient has not yet asked. One way to approach the subject is to ask patients what they think the problem is, or how sick they think they really are. The response may be straightforward (“I think I have cancer”), or the patient may indicate a wish to avoid the issue by saying, “I hope it’s nothing serious.” The patient’s condition can be revealed gradually or in stages, such as telling the patient after surgery that there is a suspicion of cancer, but that further information will have to wait for the pathology report. The physician should observe the patient’s response to this initial suspicion and, based on that reaction, choose a method for presenting subsequent information. Tumulty (1973) supported the concept of gradualism in informing a patient and the family of the terminal nature of the illness: “The total truth is revealed in small doses as the illness unfolds, affording the family the opportunity to get its feet under itself before another blow falls…. The patient and the family need to be eased into the truth… not slugged with it” (pp. 180-181).

Such a gradual disclosure is likely to lead to acceptance, whereas a harsh, sudden, or abrupt disclosure is likely to result in denial or severe depression. If the patient appears reluctant to accept the information, do not push the issue; merely make sure that openings for discussion are made available periodically and further information is provided when the patient is ready.

One statement is never appropriate: “There is nothing more that we can do.” Such statements tell patients they are being abandoned and increase their feelings of isolation and vulnerability. There is always something the family physician can do to provide compassionate, comforting care to the patient and family, even if it is only sitting at the bedside so the patient does not feel abandoned. Distress can take many forms: physical, emotional, and spiritual, as well as anticipating symptoms that may arise, such as pain, constipation, anxiety, depression, and nausea. Family physicians also can help by stopping or avoiding treatments and diagnostic procedures that hold little promise of improving the patient’s quality of life, such as taking vital signs or turning patients in bed when they are trying to sleep. If a test will not lead to a change in treatment, the test is not indicated.

Delivering “Bad News”

When giving “bad news” to a patient, do so privately and without interruption (see eTable 5-1 online). Use language the patient can understand; allow the patient to be emotional; offer to help break the news to family and employer; and be sure that care providers know what the patient has been told (Field and Cassel, 1997).

Health care professionals caring for patients at the end of life should assess the patient’s readiness to engage in the discussion and appreciate their level of understanding about the situation and how much they want to know. Once physicians know the patient’s preferences, they can tailor the discussion appropriately, checking periodically for the patient’s level of comprehension and desire for more. It is best to provide small amounts of information at a time, frequently assessing the patient’s desire to continue. Also, besides comprehension, what are the patient’s expectations?

When sharing information regarding a fatal diagnosis with a patient, eye contact, touch, and personal closeness are important. If possible, sit with the patient and hold her or his hand or touch the forearm. Such gestures convey a sense of support, closeness, and compassion, reinforcing verbal assurance that the patient will not be abandoned during the difficult time remaining. Be positive whenever possible (Table 5-2).

Table 5-2 Positive Language to Use with Dying Patients

• I will keep you as comfortable as possible.

• I will focus on maintaining your quality of life.

• I want to help you live meaningfully in the time you have left.

• I will do everything I can to help you maintain your independence.

• Maintaining your independence and dignity will be my top priority.

• I will do my best to fulfill your wish to remain at home.

Modified from Stone MJ. Goals of care at the end of life. Baylor University Med Center Proc 2001;14;134-137.

Sitting with the patient on the bed or at the bedside rather than standing puts the physician on the same level and conveys in a clear, nonverbal manner a willingness to talk and listen. In one study, physicians visited with hospitalized patients for exactly 3 minutes. Half the visits they sat down, and the other half they remained standing, a little removed from the bed. “Every one of the patients [with whom] the physician had sat down thought the physician had stayed at least 10 minutes. None of the ones [with whom] the physician remained standing estimated that it was as long” (Kübler-Ross, 1975, p. 20).

Prognosticating

One of the most difficult tasks in medicine is predicting how long someone with a terminal illness will live. People enjoy repeating stories of patients who survived long after the date their doctor predicted. In most cases, however, physicians tend to be overly optimistic, and short estimates are more accurate than longer ones (Evans and McCarthy, 1985).

Physicians overestimate survival more than 60% of the time and underestimate it only 17% of the time (Christakis and Lamont, 2000). In addition to physicians overestimating prognosis, many patients believe their treatment at the end of their life (e.g., radiation) is intended to be curative, when in reality it is palliative. The better that physicians know their patients, the more they overestimate survival, probably hoping the best for patients they know well. The longer the physician has been in practice, the more accurate the prognosis. Most patients want optimistic physicians, but at some point, this optimism may delay palliative treatment.

Attempts have been made to develop indexes (e.g., Karnofsky score) to assist the physician in making objective estimates that correlate with actual survival. However, no accurate method is currently available, largely because of the multiple variables that influence when a patient dies. A good policy is to provide a conservative estimate. It is better to have the patient and family proud that they “beat the odds” or exceeded the physician’s prediction than to have the patient die earlier than anticipated.

Conspiracy of Silence

Honesty with the terminal patient will provide the greatest benefits. However, the physician frequently is torn between patient and family, with the patient saying, “Don’t tell my wife because she can’t handle it,” while the wife is saying, “Don’t tell my husband because he can’t handle it.” Although the wishes and desires of the family must be considered when deciding how to care for a dying patient, the physician’s primary obligation is to the patient. The method of management must be based on the physician’s knowledge of the patient and insight into the patient’s desires, feelings, and approach to life. Despite all efforts at deception, the patient knows or will soon learn about his or her condition.

By cooperating with the family in a conspiracy of silence, information that really belongs to the patient is withheld. Only if the physician believes that the patient is not yet ready to cope with the information, or sincerely wishes not to be told, should the information be withheld; however, this is more often the exception than the rule. One patient said, “I knew it was cancer from the moment they started lying to me” (Lamerton, 1976, p. 28). Simpson (1976) described a 63-year-old woman whose family insisted she knew nothing of her inoperable gastric carcinoma. When visited by the physician, “She gave a dry chuckle: ‘Only a little ulcer… and my relatives down from Wales to see me for the first time in 15 years, and the priest here at 6 in the morning?’” (p. 193). When such a charade continues, terminally ill patients become more and more isolated because they are unable to communicate their concerns and fears honestly and openly with those closest to them. The elaborate schemes some families and physicians develop to “protect” the patient lead to great tension within the family, as everyone attempts to perpetuate the lie while continuing to interact with the patient.

Similarly, failure to provide the information to the patient’s family can lead to a decrease in the quality of their relationship in the time remaining, because the patient’s tensions and fears are not understood by family members and friends. Dunphy (1976) described a patient with terminal cancer who asked that his wife not be told. He then quickly planned a world cruise, which they had wanted to take for some time. The wife, unaware of the reason for the hasty departure, was unhappy and complaining throughout the trip, while the husband saw himself as a silent martyr, trying to provide a final measure of happiness for his wife. Only after returning home and reminiscing on this miserable cruise did he tell his wife the truth and the reason for the precipitous departure. Had she been told earlier, their final days together could have been a pleasant and memorable experience. At a time when the terminally ill patient most needs closeness, a lie may serve to push them apart.

Denial

Most patients tend to deny the reality of their situation after being made aware of the terminal nature of their illness. Denial is one way of coping with or protecting oneself against overwhelming anxiety, which otherwise could be incapacitating. This reaction is more marked in the patient who is told abruptly without adequate preparation. Although denial is noted primarily when the patient first learns of impending death, it can appear in different degrees at different times. Even patients who have accepted the terminal nature of their illness will need to employ denial periodically to avoid feelings of hopelessness. The mental burden of impending death is too heavy to carry all the time, and periodic relief is necessary to carry on customary activities and enjoy the limited time left. As Aring (1971) noted, La Rochefoucauld said, “Neither the sun nor death can be looked at steadily.”

Patients who avoid asking about their illness or prognosis when the physician offers every opportunity usually are experiencing denial. Excessive denial usually means that the patient subconsciously knows the truth but wants to avoid facing it consciously. Even when repeatedly given the accurate diagnosis, some patients deny ever having been told. This denial provides constant emotional protection until the patient is ready to face the truth.

“Watch with Me”

The greatest fear of the dying patient is that of suffering alone and being deserted. There is less fear of a painful death than of the loneliness and alienation that may accompany it. A patient particularly dreads being abandoned by the physician in the face of death and may need increasing levels of professional support as the illness progresses. This is particularly true if family and friends are not able to cope with the deteriorating condition and begin to avoid contact, thus contributing further to the patient’s feelings of loneliness and abandonment. If the patient feels that no one is available to discuss the situation openly and honestly, despair is likely to ensue. The patient’s fear of the unknown is easier to cope with if his or her apprehension can be shared with a caring physician who provides comfort, support, encouragement, and even a modicum of hope.

Each new problem of the dying patient should be viewed as a nuisance requiring relief or removal and approached with the vigor that one would devote to an acute, short-term illness. When a fresh complaint arises, the patient should be reexamined and attempts made to relieve the symptom so the patient will not feel unworthy of further attention. If everyday nuisances can be controlled or lessened, the patient will feel that there is sincere concern for making her or his remaining life pleasant. The physician should give attention to details such as improving the taste of food by fixing or replacing dentures or stimulating the patient’s appetite; eliminating foul odors; and suggesting occupational therapy to avoid boredom.

The physician should take advantage of every opportunity to touch and examine the patient rather than standing apart. Gentle palpation of areas of pain or merely taking a pulse can convey a sense of concern and warmth and provide comfort for an apprehensive and lonely patient. The physician and other health professionals can provide much support merely through conversation. The tendency to withdraw and reduce conversation contributes to the patient’s sense of loneliness. Silence is an enemy of dying patients and increases their separation from society. Conversation is a social bond that affirms life and reduces anxiety by providing a means of catharsis. Saunders (1976) summed up the needs of a dying patient with the words of one patient: “Watch with me,” asking that he not be abandoned in his final days. The readiness to listen and personal, caring contact are comforts that cannot be matched by modern “wonder drugs” and procedures.

When dying patients notice that people are avoiding them, they may interpret it as rejection, because their condition has not improved, or as the loss of love from family and friends, which is particularly traumatic because it tends to negate long-cherished relationships; the joys of a rewarding life can suddenly lose their value. The dying patient’s contentment depends on maintaining warm relationships with loved ones as well as continuing other satisfying interpersonal relationships, including with the physician. If physicians and others withdraw from interaction with the terminally ill patient, much of the motivation for living disappears and is replaced by despair or terminal depression. The following plea to fellow health professionals is from a young student nurse who was terminally ill (Kübler-Ross, 1975):

I know you feel insecure, don’t know what to say, don’t know what to do. But please believe me, if you care, you can’t go wrong. Just admit that you care…. All I want to know is that there will be someone to hold my hand when I need it. I am afraid. Death may get to be a routine to you, but it is new to me. You may not see me as unique!… If only we could be honest, both admit of our fears, touch one another. If you really care, would you lose so much of your valuable professionalism if you even cried with me? Just person to person? Then, it might not be so hard to die—in a hospital—with friends close by (p. 26).

Patient Control

We need to provide options to patients so they can actively participate in their care and feel a sense of control.

Terminally ill patients have a need to believe that they are still in control of their affairs as much as possible, even though they have lost control of their bodies. They should be given the freedom to make choices and assume responsibility over as many aspects of their existence as possible. For many individuals, this is an essential part of living, and its loss may destroy their motivation to live. A terminally ill patient should be helped to focus on and cope with the realities of daily living, because these problems remain very real and can serve as a diversion from constant preoccupation with the prospect of death. When patients have understanding and insight into the treatment and feel they still have some control over the decision-making process regarding their lives, they are more likely to cooperate with prescribed treatment regimens.

It is often fear of the unknown that makes a patient suspicious and resistant to therapy. Patients also should be given the opportunity to settle their affairs. Studies have shown that 40% of terminally ill patients are most concerned about being a burden to their family and friends, and that 40% of the families of cancer patients become impoverished as a result of providing care for a family member (Emanuel et al., 2003). Concentration on financial business and putting the house in order is a pragmatic approach to active participation in the decision-making process. Some patients may have a burning desire to complete a cherished project, reconcile an estranged relationship, or visit particular places before they die. Positive motivation can be maintained by assisting them to focus on and deal with these issues.

A sense of control is more possible for the patient if pain is controlled and the patient is made comfortable. Sleep should not be forced with medication, because some patients resist going to sleep, fearing they may never awaken, while others frequently have terrifying dreams.

The Importance of Hope

Hope is one of the essential ingredients of human existence, without which life is dark and cold and frustrating. It maintains strength and gives substance to courage. In the presence of hope, suffering of all sorts still has some positive qualities. In its absence, suffering is a completely negative experience (Tumulty, 1973, p. 171).

Hope allows patients to face the shortness of their lives constructively. Twycross (1986) defined hope as having “an expectation greater than zero of achieving a desired goal.” Hope can also be defined as the patient believing in what is still possible. Anything that contributes to a sense of meaning or purpose in life fosters hope. Thus, belief in God or a higher being provides hope and may give a sense of meaning to suffering for some patients.

The physician should not raise false hopes or be overaggressive in treating a terminal illness to help the patient maintain hope. Some patients find it best to plan for a little time and hope for more. A false sense of hope may deflect the patient and family from finding final meaning and value in their remaining lives together.

Even advanced cancer patients can maintain a positive outlook on life. The physician can help direct a patient toward an achievable goal, such as pain relief, support for the family from a hospice service, or making a trip to visit relatives.

Even laughter can contribute to hope. One patient said, “I may not have much control over the nearness of death, but I do have the power to joke about it.” Also, recalling uplifting moments such as vacations or looking at old photograph albums can support hope. Memories of the past can serve to enrich the present (Herth, 1990).

Having one’s individuality accepted, honored, and acknowledged fosters hope, whereas devaluation of personhood and a feeling of abandonment and isolation interfere with hope. Hope is also hindered by uncontrollable pain and discomfort. The continuation of pain after attempts to control it have failed contributes to the loss of hope (Herth, 1990).

Even when death is near, the patient can hope for a measure of happiness during the amount of time he or she has remaining. The physician can support the patient’s hope for a good quality of life in the remaining time, for spiritual healing, and for a final phase of life that has integrity and dignity.

Hope is a potent force for patients to deal with their illness and to have a confiding relationship with a physician, spouse, or close friend, which can also help prevent depression. Every physician-patient encounter should leave the dying patient emotionally more able to deal with end-of-life issues. Always promote the patient’s sense of hope (Ngo-Metzger et al., 2008).

Discussing Religious and Spiritual Issues

As patients approach the end of their life and grapple with their mortality, their spiritual and religious concerns may be awakened or intensified. Although some physicians may be uncomfortable discussing a patient’s spiritual and religious concerns, they can listen respectfully without judgment or discussion of religious views. Patients who believe that the physician really understands their concerns no longer feel isolated or alone in their final days (Low et al., 2002).

One way to approach this issue is to ask the patient, “Is faith or religion important to you in this illness?” In a study of patients with advanced cancer, 88% reported that religion and spirituality were important factors in adjusting to their illness (Balboni et al., 2007). Although religious coping can offer patients a sense of meaning and comfort when facing a life-threatening illness, it is somewhat surprising that a high level of religiousness is associated with preference for aggressive end-of-life care such as mechanical ventilation. These patients may have a greater trust that God will heal them through the treatment even when near death (Phelps et al., 2009).

Prolonging Living or Prolonging Dying?

It has been a long time since pneumonia was accepted as “the old man’s friend.” As one organic system after another slowed to a halt, the aged person was released from nausea, pain, delirium, and the degradation of lingering deterioration by finally developing pneumonia and dying. The family doctor merely showed concern and support; before antibiotics, there was not much to do but stand by and “let nature take its course.” With improved medical care, however, a dying process that might have taken only a few days in previous years now may drag out for months (Veatch, 1972). Modern technology allows improved medical care to be taken to unrealistic extremes; one person was kept alive in a vegetative state for over 37 years (LORAN Commission, 1989).

Protraction of the dying process is a modern epidemic. Some physicians seem to forget that their primary responsibility is to relieve suffering, not prolong it. Greater clinical skill often is required to provide daily supportive care than to cure acute illness. Tenderness and caring must be included in the protocols of terminally ill patients so that the ravaged patient is allowed to die peacefully, without tubing and respirators. Patients should be allowed “to experience those waning moments unencumbered by high-tech devices that serve only to impede their capacity for human interaction. Here it is the patient’s comfort, not the caregiver’s need ‘to do something,’ that should prevail” (LORAN Commission, 1989, p. 29).

In some situations, therapeutic restraint is necessary to permit a patient to die with dignity. When a cure is no longer possible, care should focus on the comfort of patient and family. At St. Christopher’s Hospice in London, feeding is provided by human hands instead of nasogastric or intravenous tubes; “even if the patient does not get enough physical nourishment, he or she gets what is more important—the personal nourishment of someone who cares enough to sit by the bed several hours each day” (Nelson and Rohricht, 1984, p. 174).

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Tags: Textbook of Family Medicine

Oct 3, 2016 | Posted by admin in MANUAL THERAPIST | Comments Off

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