40: Palliative Care, Hospice, & Care of the Dying

The goals of medical practice based exclusively on cure and restoration of function are frequently called into question when patients are irreversibly ill and potentially dying. New goals, such as pain and symptom management, enhancing quality of life, and finding meaning in the face of death may take precedence, becoming an increasingly important part of the treatment plan. Some clinicians may wonder if death is something to be fought at all costs, or if relieving suffering is a central part of our responsibility as clinicians.

Enhancing the quality of life for those afflicted with serious chronic illness is the cornerstone of the rapidly developing specialty of palliative care. As illustrated in Figure 40-1, palliative care can be provided alongside aggressive treatment of a patient’s underlying disease, but as the patient becomes sicker and closer to death, palliation often becomes the primary objective.

Early after this patient’s initial diagnosis, she received palliative care alongside aggressive treatment of her disease. Withholding aggressive pain and symptom management until referral to hospice is misguided and unfair, depriving patients of optimal treatment of their suffering from the beginning of their illness. This “both/and” approach has been one of the most important conceptual breakthroughs for palliative care, for it allows quality-of-life issues to be addressed for all seriously ill patients, not just those who are referred to hospice. It also allows patients simultaneously to “hope for the best” (that even improbable or experimental treatment might affect their disease and prolong their life) and “prepare for the worst” (make sure that financial affairs are settled and consider religious or existential issues should they wish to do so). It may be easier for some patients to make the transition to hospice if they have had this “both/and” conversation with their physician from the start of their illness.

Nonabandonment

When a patient is given the diagnosis of a life-threatening illness, a wide spectrum of feelings may emerge, including denial, anxiety, fear, sadness, and anger. If practitioners are surprised by the diagnosis, feel as though they missed a clue to the diagnosis earlier on, or are discomfited by death, they may feel inclined to withdraw from the patient’s care or to minimize the meaning and impact of the diagnosis. The commitment not to abandon the patient requires that clinicians learn to work through their own feelings, become knowledgeable about palliative care, and recognize that the process of dying can be a unique spiritual and personal experience for both doctor and patient. The goal should be to form a partnership that will help the patient face the future with courage and dignity.

The goals of partnership and shared decision making are sometimes limited by strong emotional reactions as well as long-standing personality traits that can isolate the patient from the clinician, friends, and family. In addition, physicians may be unable to commit the time and energy needed to develop close personal contact with the seriously ill and dying patient. Clinicians need to realize that extraordinary effort is sometimes required to be a partner with patients and their families through what initially may be a vigorous fight against disease, but eventually may end in the patient’s death.

The goal of palliative care is to provide the best possible quality of life for patients and their family. Palliative care addresses the biological, psychosocial, and spiritual dimensions of suffering, emphasizing state-of-the-art pain and symptom management, as well as a fresh look at goals and prognosis. Unlike Medicare-sponsored hospice programs, palliative care does not require patients to give up on aggressive treatment of their underlying disease, to accept a prognosis of lesser than 6 months, or to accept palliation as the central goal of therapy. Thus, it allows “hospice-like” treatments to be made available to those seriously ill patients who want to continue some or all disease-directed treatments. For example, patients who are highly likely to die, but want to try improbable experimental therapy in hopes that it might prolong their lives, could receive palliative care, but would not qualify for a Medicare-sponsored hospice program. Hospice programs enroll patients with a terminal disease who are more likely than not to die within the next 6 months’ time once they agree to forgo curative treatments for their disease and focus only on improving quality of life. Palliative care allows better pain and symptom management, careful attention to quality of life, an examination of the goals of treatment, and an opportunity to provide a much broader range of patients’ reflection on issues of life closure. Unfortunately, the medical infrastructure that supports the patient and family receiving palliative care at home is much less comprehensive than the medical infrastructure supporting hospice.

Patients confronting a severe illness may opt for an all-out, disease-oriented medical treatment, or a trial of aggressive medical care with set limits (such as a DNR order). Optimally, both of these patient pathways would also receive palliative care consultation from the time of diagnosis. When undergoing time-limited trials of aggressive care, patients have the opportunity to gauge and discuss with their provider whether the suffering involved with the treatment, given the odds of success, is worth it. When treatments begin to fail, or if supposedly curative treatments become too burdensome, patients can stop at any time and consider a transition to an approach that emphasizes pure palliation with their palliative care provider. This would be the time to consider referral to hospice, where relieving symptoms and alleviating suffering take precedence over attempts to treat the underlying disease.

Hospice

Hospice programs provide comprehensive care to dying patients, with a multidisciplinary team of nurses, physicians, social workers, volunteers, and clergy. These programs, which accept only patients who are more likely than not to die in the next 6 months and are willing to forgo disease-directed therapies and hospitalizations, help patients and their families live as fully as possible by providing quality palliative care. In the United States, only about 30% of deaths occur in hospice programs, and many of these patients are referred to a hospice too late in the course of their illness to take full advantage of the resources and supports available to them. The palliative care philosophy underlying hospice can be applied in a range of settings including acute-care hospitals, skilled nursing facilities, and within the homes of patients. The advantage of hospice programs is the expertise brought to techniques of palliative care by the multidisciplinary staff, as well as the added support for patient and family at home, including payment for palliative medications and medical equipment. In most outpatient hospice programs, the primary care physician and the hospice team form a partnership to care for the patient. The primary care provider, with whom the patient may have a long-term relationship, should be intimately involved in both the decision for hospice referral and the patient’s ongoing care. Once distressing symptoms are controlled, the hospice team may then help the patient find avenues for hope, meaning, and ways of saying good-bye.

Dealing with Grief

At times it may be difficult to distinguish normal grief reactions to the dying process from pathologic states that may require consultation and special treatment. There is a natural sadness that human beings experience with regard to death. This sadness, which may be a way of preparing for death, has been called preparatory or anticipatory grief. Grieving over the loss of physical abilities, social position, and contact with pleasurable routines—whether one’s own or those of a loved one—is a natural reaction. The absence of grief over these losses may indicate denial and emotional numbing. Sharing and exploring the grief can help both the patient and the clinician enter into a relationship that acknowledges each other’s humanity. Having the courage to explore these feelings assists the patient in coming to terms with death and may prevent the isolation and subsequent clinical depression to which some patients are prone.

Depression

Distinguishing clinical depression from the natural grieving process that accompanies a terminal illness may be difficult, as they share many common symptoms. The vegetative symptoms of depression—fatigue, changes in appetite, sleep disorders, decreased sexual drive—are all common in serious illness. As much as 80% of the psychological symptoms that occur in cancer patients go untreated simply because it is difficult to diagnose depression in this population. Providers should have a high index of suspicion for depression in patients with serious disease. The affective and cognitive signs of depression, such as loss of interest, withdrawal, sadness, inability to concentrate, and hopelessness may be realistic assessments in the face of severe suffering, fear of a loss of dignity, and the expectation of death. Major depression should be considered when the cognitive symptoms of dysphoria, shame, guilt, isolation, or suicidal ideation seem out of proportion to the patient’s situation (see Chapter 25). Depression in the terminally ill can be very responsive to pharmacotherapy as well as counseling even when it is part of a normal reaction. Depending on the expertise of the physician and other members of the multidisciplinary team, more challenging cases of depression and anxiety should be referred to a mental health professional. Psychotherapists who are familiar with the dying process and are experienced with medically ill patients can provide an invaluable resource, both diagnostically and therapeutically, in the care of the terminally ill.

Transitions

In terminal illness, patients frequently decline in health in a stepwise fashion. These transitions near the end of life result in feelings of loss for patients and their families, and provide the potential for personal growth and the acceptance of death. Progressive declines initially may be treated as another form of bad news, but they provide the opportunity for enhanced meaning and control in the dying process. Physicians caring for terminally ill patients must explore and work through these transitions with their patients. Questions that clinicians can ask their patients in exploring their views on end-of-life issues are listed in Table 40-1. These can be asked as hypothetical questions to explore the patient’s beliefs about life and death. In patients with more advanced illness, the questions and their answers may be highly relevant to immediate treatment decisions.

Patients’ willingness and ability to enter into deep discussions about death and dying vary considerably; clinicians need to be flexible in their expectations about how much exploration is desirable or even possible. It is unusual for a life-long pattern of behavior to be altered by the dying process; therefore, those who lived very private lives may not be able to open up significantly at the end of life. For some, dying may be a time for personal growth, reflection, and meaning; but for others, personal factors and emotional reactions block an acceptance of death. The most frequently encountered of these reactions are denial, anger, depression, fear, and anxiety. These reactions may be present in different degrees and at different times in the dying process. Clinicians need to acknowledge, explore, and eventually understand what function the reaction is serving for the patient. Empathy, rather than withdrawal, is the way to deepen the patient–clinician relationship and create an atmosphere in which personal growth is more likely to occur (see Chapter 2).

Patients with difficult personality traits who are experiencing the dying process can be especially challenging to caregivers. As represented on palliative care teams, the use of multidisciplinary specialties to brainstorm potential approaches and to share expertise may facilitate providers’ commitment not to abandon these particularly challenging patients and families.

Information, Prognosis, Alternatives

Clinicians need to provide the patient with information about the disease, the prognosis, the treatment options, and the anticipated course of the illness. Most patients and their families want to know how much time is left when a terminal diagnosis is made. Providing ranges of survival times and allowing for outliers on either end is better than predicting an exact amount of time. Refusing to give time estimates or withholding other grim information to protect the patient is usually not productive and may not allow the patient and family to prepare for death. The possibility of a miracle or an exception to the usual course of the illness allows a glimmer of hope for some patients. However, clinicians giving prognostic information must discipline themselves to discuss the possibility that death may also come sooner than expected, so that patients are not unprepared for this possibility as well. In general, the physician should be guided by patients and their families in determining how detailed the information about the course of the illness should be.

Alternative healing methods may offer hope to some patients when traditional methods are not working, have proven too burdensome, or are not consistent with the patient’s preferences. Patients who are interested in pursuing alternative methods of treatment should be supported in doing so, particularly if those treatments are noninvasive, and are therefore unlikely to harm. There is nothing to preclude combining nontraditional treatments with traditional treatments as part of an individually tailored plan. Aggressive therapeutic alternatives offer some patients a degree of hope. However, clinicians and patients should explore the tradeoffs of this type of hope together. Examining the risks and benefits of both traditional and nontraditional therapies is frequently enough to begin the dialogue, which can then continue by exploring the possibilities and probabilities of improvement and by distinguishing false hope from a meaningful alternative (see Chapter 33).

The patient in case illustration 4 has been abandoned twice. The first treating physician failed to explore all treatment alternatives (such as a second opinion, experimental therapy, and guidance in exploring nontraditional treatments) and then offered inadequate follow-up (asking him only to come back when his pain is uncontrollable at home). The alternative clinic offered the patient an active treatment approach which he and his wife desperately sought, but then deserted him by failing to follow through after the treatment was completed. The third physician finally helped the patient and family come to grips with the reality of his condition, and arranged for a program that provided caring and follow-up for his final weeks. Nonabandonment is always a key element in the care of the dying patient.

Hope & Meaning

Throughout the dying process, the search for hope and meaning is always present, even if it is not dominant. Hope aids patients and their loved ones in enduring suffering when faced with a terminal illness. It comes in many forms, not simply through cure or recovery: to hope for a peaceful death, to hope for more time to finish business, to find new meaning and the possibility of personal growth, and to hope for more emotional closeness with loved ones or with God. None of these hopes are dependent on cure of the body.

Fortunately, the hope for more time in case illustration 5 could be achieved, because the patient was willing to endure relatively aggressive treatment, and the hospice program allowed flexibility to meet her short-term goals. Invasive interventions that exceed the usual boundaries of hospice care but that extend meaningful life and improve quality of life are sometimes appropriate even within a hospice approach, as long as the patient consents. Remaining flexible in the face of changing, difficult situations and allowing the patient’s goals to guide the treatment permit the clinician to hope along with the patient for a death with as little meaningless suffering as possible.

Trying to find and maintain hope when the patient’s goal of recovery is futile calls for personal and spiritual exploration. It may be necessary to probe in depth the patient’s feeling of hopelessness before possible new avenues for hope and meaning can be examined. It is important not to provide false hope through simple or formulaic solutions to complex problems; hopeful solutions are often uniquely personal and may be discovered through the patient’s continuing exploration with family, friends, health care providers, and clergy.

Advance Directives

Advance directives are formal documents that direct health care decisions should patients lose the capacity to speak for themselves in the future. There are two types of advance directives: living wills and health care proxies (also called durable powers of attorney).

A living will allows a patient to direct the kinds of treatments wanted if the capacity to make decisions is lost. Some living wills focus on general goals, whereas others specify exact treatments (CPR, artificial ventilation, artificial hydration, and nutrition) and explicit circumstances (terminal illness, persistent vegetative state, unable to make decisions for oneself). Living wills become operative only when patients are unable to communicate for themselves, and when the circumstances specified in the document are realized.

A health care proxy or durable power of attorney allows patients to designate a person to make decisions on their behalf should they become unable to do so. These directives allow much more flexibility than do living wills, as it is difficult to anticipate all possible medical conditions and treatment options that might be in question for a particular patient.

Many people complete both documents: a living will to represent an overarching philosophy to guide care, and a health care proxy to designate a person to help interpret that philosophy when the patient can no longer do so. For healthy persons, discussing a living will or a health care proxy may be the first time they have had to face their own mortality. For those with terminal illness, completing an advance directive may be seen as another indication of their inevitable deterioration.

Involving family members in the discussions of advance directives is useful. A proxy who is uninformed about the values and wishes of the patient has an arduous job when difficult care decisions must be made. Although they cannot cover every situation, living wills with clear statements about goals, values, and directions help the clinician and the designated proxy formulate a care plan. In addition, having a form to fill out helps many patients and their families discuss death-and disability-related issues. For severely ill patients, the advance directive decisions can provide a starting point for discussions about limitations on care and the burdens of suffering as well as orders not to resuscitate.

Do Not Resuscitate

The “do-not-resuscitate” (DNR order refers to the withholding of CPR, specifically closed-chest cardiac massage, defibrillation, and artificially supplied respiratory support. For most patients with a terminal disease, CPR is ineffective, and its harshness makes it a cruel, expensive, technological death ritual. Many studies have shown that CPR provides no increase in out-of-hospital survival for patients with multisystem disease, particularly patients with advanced cancers and renal failure.

Unfortunately, many patients and their families equate DNR with abandonment or “giving up,” and agonize over its issuance. This is in part due to the way medical personnel emphasize what will be withheld rather than what will be done. When alternative treatment strategies are not explained, patients and families think that a DNR order means nothing will be done to treat potentially reversible conditions or to relieve uncomfortable symptoms. They sense that second-class treatment will be given—which may indeed happen if clinicians and the institutions they work in are not knowledgeable about the narrow focus on a DNR directive. It should be understood that agreement to a DNR order in no way limits other treatment options. A way of articulating this is to say: “We want to do everything possible to help you, but we also do not want to harm you. CPR would not work given your condition, and it is very harsh. I would recommend that you set that limit while we continue to provide any and all treatments that will help you.”

DNR orders do, however, signal that things are different. The notion that being resuscitated from cardiopulmonary arrest will not add appreciably to the quality and or quantity of life is an open acknowledgment that death might be near—and that reversing the dying process is not within the power of medicine. Although some patients are initially frightened by this discussion, many feel relieved and appreciate the opportunity to avoid treatment that would not help them.

Emergency rescue crews are obligated to attempt resuscitation unless they have specific instructions not to proceed. DNR orders that are valid in the inpatient setting may not be valid in the outpatient setting unless special forms, which vary by locality, are completed. These issues should be addressed with terminally ill patients who want to remain at home, as resuscitation may be carried out in times of crisis if the proper documentation is not on hand. In New York and other states, the Medical Orders for Life Sustaining Treatment (MOLST) has been accepted as a legal document that must be honored by emergency medical technicians and first responders. This ensures portability to other settings of the patient’s explicit wishes recorded in physicians’ orders.

Restricted Interventions

Patients at the end of life, or patients with a high degree of suffering, may elect through their advance directives not to undergo treatments that may be considered routine under other circumstances. Patients have the right to forgo therapies such as intravenous fluids, nasogastric feeding, supplemental oxygen, and others. Documentation of these choices is vital if the patient does not wish to undergo treatments and can be done on the MOLST form. Restricted intervention forms are also available in some states to augment the advance directives.

Pain and Symptom Relief

An important goal in palliative care is to keep patients as free of pain as is possible. Long-acting opioid preparations, when given in sufficient quantity in a regular dosing schedule with proportionate supplemental doses as needed, are effective in alleviating most chronic pain without significantly compromising quality of life (see Chapter 35). Knowing that they can control their own pain is reassuring to patients, especially those who have seen painful deaths. Unrealistic concerns about addiction or about respiratory depression from patients, families, and caregivers should be anticipated and addressed, as these worries often present a major obstacle to adequate pain relief. Withholding narcotics in the seriously ill because of unrealistic fears is unwarranted and cruel.

Delirium & Coma

Many patients die in profoundly altered states of sensorium. There is also an increasing number of patients with dementing illnesses in whom cognitive and affective life may have diminished significantly prior to the terminal episode. Terminally ill patients with delirium present the physician and the patient’s family with a dilemma. Delirium may be due to reversible factors that, if treated, could extend life. The extent to which reversible causes of delirium are searched for and treated depends on the patient’s current goals, previous directives, and concurrent discussions with the family in light of their underlying medical condition. The prior degree of suffering and the patient’s wishes should largely determine what should be done.

The internal, subjective experience of a person dying with altered mental status may vary significantly from the outside perception. Patients who recover from delirium and coma sometimes report nightmarish, terrifying visions, out-of-body travel, or visions of light and angelic beings; others may not be able to remember anything about the experience. Occasionally, the disorientation becomes profound and the sense of the world is lost.

Patients who experience delirium at the end of life need supportive treatment. If not already done in advance by the patient, decisions about artificial hydration and feeding should be made and formalized through the designated health care agent. The agent or the family, taking into consideration the patient’s condition and prognosis, must make a substituted judgment as to what the patient would want if they were able to understand the nuances of their condition. If this cannot be determined, the physician’s decision should be based on a consensus among family and providers about what is in the best interest of the patient.

Providing nutrition and hydration through feeding tubes and intravenous lines when the dying patient can no longer eat or drink may appear compassionate, but such practices may inadvertently prolong dying and aggravate suffering. When a person with a terminal illness is actively dying, our acceptance of this fact should guide all treatments in the direction of decreasing the suffering, enhancing the quality of remaining time, and respecting the patient’s dignity.

The Wish to Die

Sometimes, even with the best methods of palliative care, suffering cannot be alleviated to the patient’s satisfaction. If this occurs, the patient may feel that dying is the only way out. The patient may no longer be able to tolerate the pain, humiliation, loss of control, increased dependency, or burden the illness places on the family. Such patients often actively begin to contemplate ending their life.

The double effect of providing medications intended to relieve suffering while taking the risk that they may unintentionally shorten the patient’s life is an accepted part of medical practice and palliative care, provided the patient’s suffering is proportionately severe. Withdrawing life-sustaining but burdensome treatments, even though the withdrawal leads to death, is also an accepted part of practice based on the patient’s right to bodily integrity. These practices have widespread legal, ethical, and medical acceptance and should not be confused with the controversy surrounding assisted suicide and voluntary euthanasia. In this case, the patient’s wish to die can be acceded to provided it is fully informed and not based on inadequate palliation. In such circumstances, treatments that are life-sustaining but very burdensome could be removed in conjunction with the provision of a high-dose narcotic that is intended to lessen suffering (Table 40-2).

Patients, however, may ask the clinician, sometimes in an off-hand way as if testing the water, about help in dying (either assisted suicide or euthanasia). This subject has both ethical and legal repercussions, and physicians are often as reluctant as their patients to discuss it.

If the patient has terrible suffering but does not have a life-sustaining treatment that can be withdrawn (e.g., respirator, dialysis, feeding tube) or the kind of pain that can justify high doses of narcotics, the request for help in dying would put the clinician in a more difficult position legally and ethically. Voluntary active euthanasia is the act of intentionally intervening to cause the patient’s death, at the explicit request of, and with the full informed consent of, the competent patient. The physician administers a lethal agent, with the intent of both alleviating suffering and causing death. Although voluntary active euthanasia is legal is several western European countries, it is clearly illegal everywhere in the United States and would lead to prosecution if discovered. In assisted suicide, the physician provides the means (such as a prescription for barbiturates) at the request of the patient, but the patient must eventually take (or not take) the potentially lethal medication by his or her own hand. Assisted suicide is legal in Oregon, Washington, Montana, and Vermont, but it is illegal in most other states. There is an underground practice in these other states that is not actively prosecuted provided it is conducted in secret. There are now data about the legalized practice in Oregon and Washington which can allow for comparison of utilization patterns of assisted dying and other last-resort palliative care practices with other states.

A patient’s request to hasten death should be explored in detail. At first, it should be considered a cry for help. It may represent the wish to escape from depression, anxiety, uncontrolled physical pain, shame of dependency, and other psychosocial issues. Once the underlying reasons for the request are fully understood, the problem(s) can usually be ameliorated through appropriate techniques of palliative care, and the request is frequently withdrawn. If the request is ignored, minimized, or belittled, the patient is left to deal with these feelings alone, and may (as in case illustration 8) take an overdose because of suffering that might have been dealt with by other means.

There are times, as in our example, when protracted pain and other debilitating symptoms might make choosing death a plausible alternative to continued suffering. The relationship between the physician, patient, and family as well as the physician’s own values determine the response to such requests. Clinicians who refuse to participate in assisted suicide because of their own moral positions should make this clear to the patient who inquires. In this event, they have an obligation to seek common ground with the patient and to continue to search for other avenues to relieve suffering. Usually such intractable suffering can be addressed with symptom management, withdrawal of potentially life-sustaining therapies, and terminal sedation as a last resort. In this particular case, if the patient’s request was found to be rational and all reasonable alternatives had been explored, the patient could have stopped all of her heart failure medicines except for her morphine, which could have been titrated upward to control emerging shortness of breath. Those clinicians who are considering any last-resort options (legally permitted, and especially if legally prohibited) should fully explore the potential personal, professional, and legal consequences and get second opinions from experienced clinicians before proceeding. Guidelines for assisted suicide have been published, and clinicians confronted with a reasonable request to end life should refer to these, as well as to colleagues experienced in palliative care for help. In almost all cases, legally permissible and clinically preferable alternatives can be found.

Some patients are not afraid of dying and come to accept death as a natural step in completing the life cycle. Many such persons are able to die with grace and ease, demonstrating that death does not always have to be feared or denied. Furthermore, some patients experience profound personal growth in the process of dying. For some highly independent persons, this becomes a time to be more accepting and appreciative of the love and care of others.

The search for love, a connection to others, and a sense of meaning is essential in helping patients through the dying process. The ability to experience love and meaning can ameliorate considerable suffering. If love and purpose can be found, then fears usually lessen, and dying may be accepted as an adventure and entry into the next phase of existence.

Terminal illness can help resolve or intensify family conflict. Issues of power, money, allegiances, previous losses, and grief may surface along with unforeseen courage and the noblest sacrifices that family members may ever have made for each other. Paradoxical feelings of anger and love, fear and bravery, anxiety and compassion, depression and transcendence never seem to be far removed from dying patients and their caregivers.

The physician can be a healing presence in this volatile mix by including the patient’s family and other caregivers as part of the treatment team. Such collaboration broadens the patient’s network of support, enlisting new allies and more widely distributing the burden of care.

The clinician needs to communicate clearly with the family members regarding plans for care, prognosis, complications, and who will make decisions should the patient be unable. Establishing advance directives with the patient and the proxy is essential when it is likely the patient will lose capacity during the illness. The selection of a proxy forces the patient to choose among family members and may trigger old family wounds over who was favored and who has more power. The patient’s wishes and choices should take precedence over what family members may want, although in actual practice this is sometimes difficult to achieve. When the patient loses mental capacity, the family becomes the focus of decision making, and processes are brought into play that may create conflict. Family pressures may even influence the decisions of a competent patient. The clinician may need to remind family members that whether the patient is competent or not, the patient’s values, beliefs, and preferences need to be honored.

When a family has many members, the clinician may want to meet regularly with a small group and at special times with more members. The family can be asked to designate representatives who can stay in close touch with the physician. If patients have lost the capacity to express their wishes and family members are in conflict about a certain plan, it is best to focus on what the patient would have wanted, applying the ethical principle of substituted judgment. If the patient’s wishes are unknown, what is in the patient’s best interest must be discussed. Views on what is truly in the patient’s best interest may vary widely between family members and clinicians (see Chapter 11).

Unexpected Death

An unexpected death puts a particular strain on the family and the clinician. Sudden or traumatic death sends a shock through the family and, when it occurs in a medical facility, may elicit strong doubt about competence in clinicians. Meeting with the family, expressing sympathy, and answering questions in as straightforward a way as possible may be helpful. Family members should be allowed to view and stay with the deceased; when possible, the eyes and mouth should be closed and the limbs arranged peacefully. Strong emotional reactions should be anticipated and the tears of grief encouraged.

The clinician should recognize each family member present and solicit each person’s reaction. Cultural norms may vary widely in the emotional behaviors displayed. The normal reactions to grief in some cultures (screaming, yelling, falling to the ground) may seem inappropriate or embarrassing to a clinician from another, less demonstrative background (see Chapter 15). Only through experience with various manifestations of grief can the clinician judge what “normal” grief should look like. Physicians and nurses may want to call in clergy and social workers; each may have something to offer a family that is trying to integrate the shock and loss.

When an unexpected death occurs in the context of ongoing medical care, the practitioner should critically examine what, if anything could have been done to prevent its occurrence. Self-recrimination and blame may initially be part of this process for the clinician, especially if a possible medical misjudgment was involved. Learning from the experience, discussing it with trusted colleagues, and disclosing it to the family are often appropriate. It is important that clinicians not bear the burdens of these experiences alone (see Chapter 37).

Unresolved Grief

Of all the causes of unremitting grief, one of the most overwhelmingly difficult for families and practitioners is the death of a child, especially when the death is unexpected. The parents’ grief must be followed closely for signs of becoming pathological. The physician should not try to ameliorate the pain of the loss prematurely. Supportive listening, acknowledging and legitimizing the suffering, and expressing empathy may be the best initial approach. Follow-up visits to elicit stories and memories give the parents a chance to talk about the deceased if they choose. Discussing and expressing anger, guilt, and sadness can assist in the bereavement process. In many other cases, survivors are unable to deal with the loss of a parent, a sibling, a spouse or partner, or a long-time friend. Grief that is unresolved may lead to clinical depression, social isolation, and emotional numbing as well as multiple physical symptoms. Social problems such as drug abuse, marital and work conflicts, and feelings of hopelessness and abandonment may also appear. If the clinician cannot help the family resolve the grief, referral should be made to an appropriate support group or a therapist for counseling.

Under the Medicare Hospice Benefit, hospices provide bereavement support for at least a year to families of patients they have served. They also provide bereavement services to partners and close friends. Often, hospices provide this support to people in their community even if the death did not occur with hospice care.

How health care workers take care of themselves when involved in work related to death and dying has not received a great deal of attention. Burnout is common among physicians and nurses who work with patients who are suffering with a terminal illness. Having responsibility for dying patients’ care and management in a society that denies death only exacerbates the problem. From the initial delivery of bad news about a new serious diagnosis, to discussions about disease recurrence, to the transition to hospice, to decisions about whether to attend the funeral, clinicians are confronted with thoughts and feelings that enmesh them with the patient and the family. How closely the patient’s family resembles their own family dynamics or illness experience may determine how emotionally involved they become. The grief that follows the death of a close patient may be quite profound and requires time and reflection to heal. Unfortunately, most institutions do not have an organized way for caregivers to get and give support during these times. The feelings of loss need to be recognized and discussed. Support or bereavement groups may help in this process. Hospital morbidity and mortality committees review the decedent’s medical care, but they rarely reflect on how caregivers felt about the death, or what effect it has on the staff. Setting aside time to review the death from this perspective is likely to be helpful for staff morale, cohesiveness, and healing (see Chapter 6).

Taking care of the dying patient enables clinicians to view death at very close range. Feelings of compassion and love as well as loneliness and vulnerability are frequently stirred up in providers. Healing responses may include turning to music, art, religion, literature, nature, humor, or psychotherapy for solace and understanding. Spiritual questions of purpose and meaning in life become more immediate in the face of impending death. Not only do workers in the realm of death and dying midwife patients through the dying process, but also the dying patient midwives us into a fuller experience of life.