39 - 34 End of Life Issues

• 01 - 34.1 Death, Dying, and Bereavement
• 02 - 34.2 Palliative Care
• 03 - 34.3 Euthanasia and Physician Assisted Suicid

01 - 34.1 Death, Dying, and Bereavement

34.1 Death, Dying, and Bereavement

End-of-Life Issues 34.1 Death, Dying, and Bereavement DEATH AND DYING Definitions The terms death and dying require definition: Whereas death may be considered the absolute cessation of vital functions, dying is the process of losing these functions. Dying may also be seen as a developmental concomitant of living, a part of the birth-to-death continuum. Living may entail numerous mini-deaths—the end of growth and its potential, health-compromising illnesses, multiple losses, decreasing vitality and growing dependency with aging, and dying. Dying, and the individual’s awareness of it, imbues humans with values, passions, wishes, and the impetus to make the most of time. Two terms that have been used with increased frequency in recent years refer to the quality of living as death comes near. A good death is one that is free from avoidable distress and suffering for patients, families, and caregivers and is reasonably consistent with clinical, cultural, and ethical standards. A bad death, in contrast, is characterized by needless suffering, a dishonoring of the patient or family’s wishes or values, and a sense among participants or observers that norms of decency have been offended. Uniform Determination of Death Act. The President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research published its definition of death in 1981. Working with the American Bar Association, the American Medical Association (AMA), and the National Conference of Commissioners on Uniform State Laws, the Commission established that one who has sustained either (1) irretrievable cessation of circulatory and respiratory functions or (2) irretrievable cessation of all functions of the entire brain, including the brainstem, is dead. Determination of death must be in accordance with accepted medical standards. Generally accepted criteria for determining brain death require a series of neurological and other assessments. For children, special guidelines apply. They generally specify two assessments separated by an interval of at least 48 hours for those between the ages of 1 week and 2 months, 24 hours for those between the ages of 2 months and 1 year, and 12 hours for older children; additional confirmatory tests may also be advisable under some circumstances. Brain death criteria are normally not applied to infants younger than 7 days. Table 34.1-1 lists the clinical criteria for brain death in adults and children.

Table 34.1-1 Clinical Criteria for Brain Death in Adults and Children Legal Aspects of Death According to law, physicians must sign the death certificate, which attests to the cause of death (e.g., congestive heart failure or pneumonia). They must also attribute the death to natural, accidental, suicidal, homicidal, or unknown causes. A medical examiner, coroner, or pathologist must examine anyone who dies unattended by a physician and perform an autopsy to determine the cause of death. In some cases, a psychological autopsy is performed: A person’s sociocultural and psychological background is examined retrospectively by interviewing friends, relatives, and doctors to determine whether a mental illness, such as a depressive disorder, was present. For example, a determination can be made that a person died because he or she was pushed (murder) or because he or she jumped (suicide) from a high building. Each situation has clear medical and legal implications. Stages of Death and Dying Elisabeth Kübler-Ross, a psychiatrist and thanatologist, made a comprehensive and useful organization of reactions to impending death. A dying patient seldom follows a regular series of responses that can be clearly identified; no established sequence is applicable to all patients. Nevertheless, the following five stages proposed by KüblerRoss are widely encountered. Stage 1: Shock and Denial. On being told that they are dying, persons initially react with shock. They may appear dazed at first and then may refuse to believe the

diagnosis; they may deny that anything is wrong. Some persons never pass beyond this stage and may go from doctor to doctor until they find one who supports their position. The degree to which denial is adaptive or maladaptive appears to depend on whether a patient continues to obtain treatment even while denying the prognosis. In such cases, physicians must communicate to patients and their families, respectfully and directly, basic information about the illness, its prognosis, and the options for treatment. For effective communication, physicians must allow for patients’ emotional responses and reassure them that they will not be abandoned. Stage 2: Anger. Persons become frustrated, irritable, and angry at being ill. They commonly ask, “Why me?” They may become angry at God, their fate, a friend, or a family member; they may even blame themselves. They may displace their anger onto the hospital staff members and the doctor, whom they blame for the illness. Patients in the stage of anger are difficult to treat. Doctors who have difficulty understanding that anger is a predictable reaction and is really a displacement may withdraw from patients or transfer them to other doctors’ care. Physicians treating angry patients must realize that the anger being expressed cannot be taken personally. An empathic, nondefensive response can help defuse patients’ anger and can help them refocus on their own deep feelings (e.g., grief, fear, loneliness) that underlie the anger. Physicians should also recognize that anger may represent patients’ desire for control in a situation in which they feel completely out of control. Stage 3: Bargaining. Patients may attempt to negotiate with physicians, friends, or even God; in return for a cure, they promise to fulfill one or many pledges, such as giving to charity and attending church regularly. Some patients believe that if they are good (compliant, nonquestioning, cheerful), the doctor will make them better. The treatment of such patients involves making it clear that they will be taken care of to the best of the doctor’s abilities and that everything that can be done will be done, regardless of any action or behavior on the patients’ part. Patients must also be encouraged to participate as partners in their treatment and to understand that being a good patient means being as honest and straightforward as possible. Stage 4: Depression. In the fourth stage, patients show clinical signs of depression —withdrawal, psychomotor retardation, sleep disturbances, hopelessness, and, possibly, suicidal ideation. The depression may be a reaction to the effects of the illness on their lives (e.g., loss of a job, economic hardship, helplessness, hopelessness, and isolation from friends and family), or it may be in anticipation of the loss of life that will eventually occur. A major depressive disorder with vegetative signs and suicidal ideation may require treatment with antidepressant medication or electroconvulsive therapy (ECT). All persons feel some sadness at the prospect of their own death, and normal sadness does not require biological intervention. But major depressive disorder and active suicidal ideation can be alleviated and should not be accepted as normal reactions to impending death. A person who suffers from major depressive disorder may

be unable to sustain hope, which can enhance the dignity and quality of life and even prolong longevity. Studies have shown that some terminally ill patients can delay their death until after a loved one’s significant event, such as graduation of a grandson from college. Stage 5: Acceptance. In the stage of acceptance, patients realize that death is inevitable, and they accept the universality of the experience. Their feelings can range from a neutral to a euphoric mood. Under ideal circumstances, patients resolve their feelings about the inevitability of death and can talk about facing the unknown. Those with strong religious beliefs and a conviction of life after death sometimes find comfort in the ecclesiastical maxim, “Fear not death; remember those who have gone before you and those who will come after.” Near-Death Experiences Near-death descriptions are often strikingly similar, involving an out-of-body experience of viewing one’s body and overhearing conversations, feelings of peace and quiet, hearing a distant noise, entering a dark tunnel, leaving the body behind, meeting dead loved ones, witnessing beings of light, returning to life to complete unfinished business, and a deep sadness on leaving this new dimension. This pattern of sensations and perceptions is usually described as peaceful and loving; it feels real to participants, who distinguish it from dreams or hallucinations. These experiences provoke sweeping lifestyle changes, such as fewer material concerns, a heightened sense of purpose, a belief in God, joy of life, compassion, less fear of death, an enhanced approach to life, and intense feelings of love. In a similar vein, hospice nurses have described experiences among terminally ill patients of visions that may include a sense of presence of departed loved ones, of spiritual beings, of a bright light, or of being in a particular place, often described with a sense of warmth and love. Although such “visions” do not readily lend themselves to scientific investigation and thus are not legitimized, patients may benefit from discussing them with clinicians. A term to describe this experience is unio mystica, which refers to an oceanic feeling of mystic unity with an infinite power. Life Cycle Considerations about Death and Dying The clinical diversity of death-related attitudes and behaviors between children and adults has its roots in developmental factors and age-dependent differences in causes of death. As opposed to adults, who usually die from chronic illness, children are apt to die from sudden, unexpected causes. Almost half of the children who die between the ages of 1 and 14 years and nearly 75 percent of those who die in late adolescence and early adulthood die from accidents, homicides, and suicides. With their characteristics of violence, suddenness, and mutilation, such unnatural causes of death are special stressors for grieving survivors. Bereaved parents and siblings of dead young children and teenagers often feel victimized and traumatized by their losses; their grief reactions resemble posttraumatic stress disorder (PTSD). Devastating family disruptions can occur,

and surviving siblings risk having their emotional needs put on the back burner, ignored, or completely unnoticed. Children. Children’s attitudes toward death mirror their attitudes toward life. Although they share with adolescents, adults, and elderly adults similar fears, anxieties, beliefs, and attitudes about dying, some of their interpretations and reactions are age specific. None welcome it without ambivalence, and all temper their acceptance with healthy doses of denial and avoidance. Dying children are often aware of their condition and want to discuss it. They often have more sophisticated views about dying than their medically well counterparts, engendered by their own failing health, separations from parents, subjection to painful procedures, and the deaths of hospital chums. At the preschool, preoperational stage of cognitive development, death is seen as a temporary absence, incomplete and reversible, like departure or sleep. Separation from the primary caretaker(s) is the main fear of preschool-age children. This fear surfaces as an increase in nightmares, more aggressive play, or concern about the deaths of others rather than in direct discourse. Terminally ill children may assume responsibility for their death, feeling guilty for dying. Preschool children may be unable to relate the treatment to the illness, instead viewing treatment as punishment and family separation as rejection. They need reassurance that they are loved, have done nothing wrong, are not responsible for their illness, and will not be abandoned. School-age children manifest concrete-operational thinking and recognize death as a final reality. They, however, view death as something that happens to old people, not to them. Between the ages of 6 and 12 years, children have active fantasies of violence and aggression, often dominated by themes of death and killing. School-age children ask questions about serious illness and death if encouraged to do so; however, if they receive cues that the subject is taboo, they may withdraw and participate less fully in their care. Facilitating open discussion and updating children with important information, including prognostic changes, can be very helpful. In addition, children may need help coping with peers and school demands. Teachers should be informed and updated. Classmates may need education and assistance to help them understand the situation and respond appropriately. Adolescents. Capable of formal cognitive operations, adolescents understand that death is inevitable and final but may not accept that their own death is possible. The major fears of dying teenagers parallel those of all teenagers—losing control, being imperfect, and being different. Concerns about body image, hair loss, or loss of bodily control can generate great resistance to continuing treatment. Alternating emotions of despair, rage, grief, bitterness, numbness, terror, and joy are common. The potential for withdrawal and isolation is great because teenagers may equate parental support with loss of independence or may deny their fears of abandonment by actually repulsing friendly gestures. Teenagers must be included in all decision-making processes surrounding their deaths. Many are capable of great courage, grace, and dignity in facing death. Adults. Some of the most often expressed fears of adult patients entering hospice

care, listed in the approximate order of frequency, include fears of (1) separation from loved ones, homes, and jobs; (2) becoming a burden to others; (3) losing control; (4) what will happen to dependents; (5) pain or other worsening symptoms; (6) being unable to complete life tasks or responsibilities; (7) dying; (8) being dead; (9) the fears of others (reflected fears); (10) the fate of the body; and (11) the afterlife. Problems in communication arise out of trepidation, making it important for those involved in health care to provide environments of trust and safety in which people can begin to talk about uncertainties, anxieties, and concerns. Late-age adults often accept that their time has come. Their main fears include long, painful, and disfiguring deaths; prolonged vegetative states; isolation; and loss of control or dignity. Elderly patients may talk or joke openly about dying and sometimes welcome it. In their 70s and beyond, they rarely harbor illusions of indestructibility— most have already had several close calls: Their parents have died, and they have gone to funerals for friends and relatives. Although they may not be happy to die, they can be reconciled to it. According to Erik Erikson, the eighth and final stage in the life cycle brings a sense of either integrity or despair. As elderly adults enter the last phase of their lives, they reflect on their pasts. When they have taken care of their affairs, have been relatively successful, and have adapted to the triumphs and disappointments of life, they can look back with satisfaction and only a few regrets. Integrity of the self allows people to accept inevitable disease and death without fear of succumbing helplessly. If elderly individuals look back on life as a series of missed opportunities or personal misfortunes, however, they feel a sense of bitter despair, a preoccupation with what might have been if only this or that had happened. Then death is fearsome because it symbolizes emptiness and failure. Management Caring for a dying patient is highly individual. Caretakers need to deal with death honestly, tolerate wide ranges of affects, connect with suffering patients and bereaved loved ones, and resolve routine issues as they arise. Although each therapeutic relationship between a patient and health provider has a uniqueness derived from the patient’s and health provider’s gender, constitution, life experience, age, stage of life, resources, faith, culture, and other considerations, major themes confront all health providers caring for dying patients. End-of-life care and palliative medicine are discussed in Section 34.2. BEREAVEMENT, GRIEF, AND MOURNING Bereavement, grief, and mourning are terms that apply to the psychological reactions of those who survive a significant loss. Grief is the subjective feeling precipitated by the death of a loved one. The term is used synonymously with mourning, although, in the strictest sense, mourning is the process by which grief is resolved; it is the societal expression of postbereavement behavior and practices. Bereavement literally means the

state of being deprived of someone by death and refers to being in the state of mourning. Regardless of the fine points that differentiate these terms, the experiences of grief and bereavement have sufficient similarities to warrant a syndrome that has signs, symptoms, a demonstrable course, and an expected resolution. Normal Bereavement Reactions The first response to loss, protest, is followed by a longer period of searching behavior. As hope to reestablish the attachment bond diminishes, searching behaviors give way to despair and detachment before bereaved individuals eventually reorganize themselves around the recognition that the lost person will not return. Although the bereaved ultimately learn to accept the reality of the death, they also find psychological and symbolic ways of keeping the memory of the deceased person very much alive. Grief work allows the survivor to redefine his or her relationship to the deceased person and to form new but enduring ties. Duration of Grief. Most societies mandate modes of bereavement and time for grieving. In contemporary America, bereaved individuals are expected to return to work or school in a few weeks, to establish equilibrium within a few months, and to be capable of pursuing new relationships within 6 months to 1 year. Ample evidence suggests that the bereavement process does not end within a prescribed interval; certain aspects persist indefinitely for many otherwise high-functioning, normal individuals. The most lasting manifestation of grief, especially after spousal bereavement, is loneliness. Often present for years after the death of a spouse, loneliness may, for some, be a daily reminder of the loss. Other common manifestations of protracted grief occur intermittently. For example, a man who has lost his wife may experience elements of acute grief every time he hears her name or sees her picture on the nightstand. Usually, these reactions become increasingly short lived over time, dissipating within minutes, and become tinged with positive and pleasant affects. Such bittersweet memories may last a lifetime. Thus, most grief does not fully resolve or permanently disappear; rather, grief becomes circumscribed and submerged only to reemerge in response to certain triggers. Anticipatory Grief In anticipatory grief, grief reactions are brought on by the slow dying process of a loved one through injury, illness, or high-risk activity. Although anticipatory grief may soften the blow of the eventual death, it can also lead to premature separation and withdrawal while not necessarily mitigating later bereavement. At times, the intensification of intimacy during this period may heighten the actual sense of loss even though it prepares the survivor in other ways. Anniversary Reactions. When the trigger for an acute grief reaction is a special occasion, such as a holiday or birthday, the rekindled grief is called an anniversary

reaction. It is not unusual for anniversary reactions to occur each year on the same day the person died or, in some cases, when the bereaved individual becomes the same age the deceased person was at the time of death. Although these anniversary reactions tend to become relatively mild and brief over time, they can be experienced as the reliving of one’s original grief and prevail for hours or days. Mourning From earliest history, every culture records its own beliefs, customs, and behaviors related to bereavement. Specific patterns include rituals for mourning (e.g., wakes or Shiva), for disposing of the body, for invocation of religious ceremonies, and for periodic official remembrances. The funeral is the prevailing public display of bereavement in contemporary North America. The funeral and burial service acknowledge the real and final nature of the death, countering denial; they also garner support for the bereaved, encouraging tribute to the dead, uniting families, and facilitating community expressions of sorrow. If cremation replaces burial, ceremonies associated with dissemination of the ashes perform similar functions. Visits, prayers, and other ceremonies allow for continuing support, coming to terms with reality, remembering, emotional expression, and concluding unfinished business with the deceased. Several cultural and religious rituals provide purpose and meaning, protect the survivors from isolation and vulnerability, and set limits on grieving. Subsequent holidays, birthdays, and anniversaries serve to remind the living of the dead and may elicit grief as real and fresh as the original experience; over time, these anniversary grievings become attenuated but often remain in some form. Bereavement Because bereavement often evokes depressive symptoms, it may be necessary to demarcate normal grief reactions from major depressive disorder (Table 34.1-2). In the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), a new condition has been proposed for further study called persistent complex bereavement disorder to account for bereavement that lasts for more than 1 year (Table 34.1-3). This disorder may resemble symptoms of a major depressive episode, which is characterized by severe functional impairment and includes morbid preoccupation with worthlessness, suicidal ideation, psychotic symptoms, or psychomotor retardation. This is discussed further below. Table 34.1-2 Differentiating the Depressive Symptoms Associated with Bereavement from Major Depression

Table 34.1-3 DSM-5 Diagnostic Criteria for Persistent Complex Bereavement Disorder Complicated Bereavement Complicated bereavement has a confusing array of terms to describe it—abnormal, atypical, distorted, morbid, traumatic, and unresolved, to name a few types. Three patterns of complicated, dysfunctional grief syndromes have been identified—chronic, hypertrophic, and delayed grief. These are not diagnostic categories within DSM-5 but are descriptive syndromes that, if present, may be prodromata of a major depressive disorder.

Chronic Grief. The most common type of complicated grief is chronic grief, often highlighted by bitterness and idealization of the dead person. Chronic grief is most likely to occur when the relationship between the bereaved and the deceased had been extremely close, ambivalent, or dependent or when social supports are lacking and friends and relatives are not available to share the sorrow over the extended period of time needed for most mourners. Hypertrophic Grief. Most often seen after a sudden and unexpected death, bereavement reactions are extraordinarily intense in hypertrophic grief. Customary coping strategies are ineffectual to mitigate anxiety, and withdrawal is frequent. When one family member is experiencing a hypertrophic grief reaction, disruption of family stability can occur. Hypertrophic grief frequently takes on a long-term course, albeit one attenuated over time. Delayed Grief. Absent or inhibited grief when one normally expects to find overt signs and symptoms of acute mourning is referred to as delayed grief. This pattern is marked by prolonged denial; anger and guilt may complicate its course. Traumatic Bereavement. Traumatic bereavement refers to grief that is both chronic and hypertrophic. This syndrome is characterized by recurrent, intense pangs of grief with persistent yearning, pining, and longing for the deceased; recurrent intrusive images of the death; and a distressing admixture of avoidance and preoccupation with reminders of the loss. Positive memories are often blocked or excessively sad, or they are experienced in prolonged states of reverie that interfere with daily activities. A history of psychiatric illness appears to be common in this condition, as is a very close, identitydefining relationship with the deceased person. Medical or Psychiatric Illnesses Associated with Bereavement. Medical complications include exacerbations of existing diseases and vulnerability to new ones; fear for one’s health and more trips to the doctor; and an increased mortality rate, especially in men. The highest relative mortality risk is found immediately after bereavement, particularly from ischemic heart disease. The greatest effect of bereavement on mortality is for men younger than 65 years. Higher mortality rates in bereaved men than in bereaved women are due to increases in the relative risk of death by suicide, accident, cardiovascular disease, and some infectious diseases. In widows, the relative risk of death from cirrhosis and suicide may increase. In both sexes, bereavement appears to exacerbate health-compromising behaviors, such as increased alcohol consumption, smoking, and the use of over-the-counter medications. Psychiatric complications of bereavement include an increased risk for major depressive disorder, prolonged anxiety, panic, and a posttraumatic stress–like syndrome; increased alcohol, drug, and cigarette consumption; and an increased risk of suicide. Because of their psychosocial, emotional, and cognitive immaturity, bereaved children may be especially vulnerable to psychopathology.

Bereavement and Depression. Although symptoms overlap, grief can be distinguished from a full depressive episode. Most bereaved individuals experience intense sadness, but only a few meet DSM-5 criteria for major depressive episode. Grief is a complex experience in which positive emotions take their place beside the negative ones. Grief is fluid and changing, an evolving state in which emotional intensity gradually lessens and positive, comforting aspects of the lost relationship come to the fore. Pangs of grief are stimulus bound, related to internal and external reminders of the deceased person. This differs from depression, which is more pervasive and characterized by much difficulty experiencing self-validating, positive feelings. Grief is a fluctuating state with individual variability, in which cognitive and behavioral adjustments are progressively made until the bereaved individual can hold the deceased person in a comfortable place in memory and a satisfying life can be resumed. By contrast, major depressive episode consists of a recognizable and stable cluster of debilitating symptoms accompanied by a protracted, enduring low mood. Major depressive episode tends to be persistent and associated with poor work and social functioning, pathological psychoneuroimmunological function, and other neurobiological changes, unless treated. Bereavement and Posttraumatic Stress Disorder. Unnatural and violent deaths, such as homicide, suicide, or death in the context of terrorism, are much more likely to precipitate PTSD in surviving loved ones than are natural deaths. In such circumstances, themes of violence, victimization, and volition (i.e., the choice of death over life, as in the case of suicide) are intermixed with other aspects of grief, and traumatic distress marked by fear, horror, vulnerability, and disintegration of cognitive assumptions ensues. Disbelief, despair, anxiety symptoms, preoccupation with the deceased person and the circumstances of the death, withdrawal, hyperarousal, and dysphoria are more intense and more prolonged than they are under nontraumatic circumstances, and an increased risk may exist for other complications. Although treatment studies in survivors of sudden death are few and far between, most experts agree that initial attention should be focused on traumatic distress, that a role is seen for both pharmacotherapy and psychotherapy, and that self-help support groups can be enormously beneficial. Biological Perspectives Grief is both a physiological and an emotional response. During acute grief (as with other stressful events), persons may experience disruption of biological rhythms. Grief is also accompanied by impaired immune functioning, including decreased lymphocyte proliferation and impaired functioning of natural killer cells. Whether the immune changes are clinically significant has not been established, but the mortality rate for widows and widowers following the death of a spouse is higher than that in the general population. Widowers appear to be at risk longer than widows.

Phenomenology of Grief. Bereavement reactions include intense feeling states; invoke a variety of coping strategies; and lead to alterations in interpersonal relationships, biopsychosocial functioning, self-esteem, and world view that can last indefinitely. Manifestations of grief reflect the individual’s personality, previous life experiences, and past psychological history; the significance of the loss; the nature of the bereaved person’s relationship with the deceased person; the existing social network; intercurrent life events; health; and other resources. Despite individual variations in the bereavement process, investigators have proposed grieving process models, which include at least three partially overlapping phases or states: (1) initial shock, disbelief, and denial; (2) an intermediate period of acute discomfort and social withdrawal; and (3) a culminating period of restitution and reorganization. As with Kübler-Ross’ stages of dying, the grieving stages do not prescribe a correct course of grief; rather, they are general guidelines describing an overlapping and fluid process that varies with the survivors (Table 34.1-4). Table 34.1-4 Phases of Grief LIFE CYCLE PERSPECTIVES ABOUT BEREAVEMENT Bereavement During Childhood and Adolescence Approximately 4 percent of North American children lose one or both parents by the age of 15 years; sibling death is the second most commonly experienced bereavement. Grief reactions are colored by developmental levels and concepts of death and may not resemble adult reactions. Children may display minimal grief at time of death and experience the full effect of the loss later. Grieving children may not withdraw and dwell on the person who died, but instead, may throw themselves into activities. Indifference, anger, or misbehavior may be displayed rather than sadness; behaviors can

be erratic and labile. Strong feelings of anger and fears of abandonment or death may show up in the behavior of grieving children. Children often play death games as a way of working out their feelings and anxieties. These games are familiar to the children and provide safe opportunities to express their feelings. Although they may seem to show grief only occasionally and briefly, in reality, a child’s grief often lasts longer than that of an adult. Mourning in children may need to be addressed again and again as the child gets older. Children will think about the loss repeatedly, especially during important times in their lives, such as going to camp, graduating from school, getting married, or giving birth to their own children. A child’s grief can be influenced by his or her age, personality, developmental stage, earlier experiences with death, and relationship with the deceased person. The surroundings, cause of death, and family members’ ability to communicate with one another and to continue as a family after the death can also affect grief. The child’s ongoing need for care, his or her opportunity to share feelings and memories, the parent’s ability to cope with stress, and the child’s steady relationships with other adults are other factors that may influence grief. Even older children frequently feel abandoned or rejected when a parent dies and may show hostility toward the deceased or the surviving parent, now perceived as one who might also “abandon” them. They may feel responsible because of earlier misbehavior or because they said or wished that that person would die at some time. Children younger than 2 years may show loss of speech or diffuse distress. Children younger than 5 years are apt to respond with eating, sleeping, and bowel and bladder dysfunctions. Strong feelings of sadness, fear, and anxiety can occur, but these feelings are not persistent and tend to alternate between longer lasting normal states. Schoolage children may become phobic or hypochondriacal, withdrawn, or pseudomature, and school performance and peer relations often suffer. Adolescents, as with adults, run the gamut in expressing bereavement, ranging from behavioral problems, somatic symptoms, and erratic moods to stoicism. Whereas adolescent boys losing a parent may become delinquent, girls may turn to a sexual pattern for comfort and reassurance. Behavioral disturbances and depression are common at all ages. Rates of depressive episodes in bereaved children and adolescents are as high as in bereaved adults. Bereaved children must be treated with respect to their own levels of emotional and cognitive maturity. They need to be told that the death is real and irreversible and that they are blameless. Feelings and concerns should be expressed, and questions should be invited and answered with simplicity, candor, and clarity. Children, as with adults, need rituals to commemorate their loved ones; attendance at the funeral and participation in mourning may be beneficial first steps. Bereavement During Adulthood No consensus exists on which type of loss is associated with the most severe reactions. Although the death of a spouse is often ranked as the most stressful life event, some have argued that losing a child is even more profound. The death of a child is a special

sorrow, a lifelong loss for surviving mothers, fathers, brothers, sisters, grandparents, and other family members. A child’s death is a life-altering experience. The deaths of parents and siblings in adult life have not achieved much systematic study, but they are generally considered relatively mild compared with the loss of a spouse or child. Grief appears most intense for the mother in late perinatal losses (stillbirths or neonatal deaths rather than miscarriages) and often is reexperienced during subsequent pregnancies. Sudden infant death syndrome is particularly problematic in that the death is sudden and unexpected. Parents may experience extra guilt or blame each other, often resulting in subsequent marital difficulties. The surviving family members, friends, or lovers of individuals who have died from acquired immunodeficiency syndrome (AIDS) are uniquely challenged. The illness carries with it the stigmata of the illness itself and of the gay community in general; it carries with it caretakers’ fears of contracting the illness; and it is most prevalent in people who are in the prime of life. Asymptomatic infection may permit the infected person and those close to him or her time to adapt to the diagnosis. When a person who is human immunodeficiency virus (HIV) positive begins to manifest symptoms of opportunistic infection or associated cancer, however, the illness again becomes a threat. Coping with the emotional reality is arduous and complex. Often caretakers, as well as HIV-positive patients, wish for death, which can evoke feelings of guilt. For bereaved lovers, their own HIV status, multiple losses, and other concurrent stressors can complicate recovery. Gay men who have lost lovers to AIDS may be more depressed, consider suicide more often, and be more vulnerable to illicit drug use than are other bereaved individuals. Elderly adults face more losses than individuals at other phases of the life cycle, and intense loneliness may be a lasting memorial to those who have died. For highly impaired elders who lose a spouse they depended on for daily functions or who was their sole source of companionship, bereavement reactions are profound. Grief Therapy Persons in normal grief seldom seek psychiatric help because they accept their reactions and behavior as appropriate. Accordingly, a bereaved person should not routinely see a psychiatrist or psychologist unless a markedly divergent reaction to the loss is noted. For example, under usual circumstances, a bereaved person does not make a suicide attempt; if someone seriously contemplates suicide, psychiatric intervention is indicated. When professional assistance is sought, it usually involves a request for sleeping medication from a family physician. A mild sedative to induce sleep may be useful in some situations, but antidepressant medication or antianxiety agents are rarely indicated in normal grief. Bereaved persons may have to go through the mourning process, however painful it is, for successful resolution to occur. Narcotizing patients with drugs interferes with the normal process that ultimately can lead to a favorable outcome. Because grief reactions can develop into a depressive disorder or pathological

mourning, specific counseling sessions for bereaved individuals are often valuable. Grief therapy is an increasingly important skill. In regularly scheduled sessions, grieving persons are encouraged to talk about feelings of loss and about the person who has died. Many bereaved persons have difficulty recognizing and expressing angry or ambivalent feelings toward a deceased person, and they must be reassured that these feelings are normal. Grief therapy need not be conducted only on a one-to-one basis; group counseling is also effective. Self-help groups also have great value in certain cases. About 30 percent of widows and widowers report that they become isolated from friends, withdraw from social life, and thus experience feelings of isolation and loneliness. Self-help groups offer companionship, social contacts, and emotional support; they eventually enable their members to reenter society in a meaningful way. Bereavement care and grief therapy have been most effective with widows and widowers. The necessity for this therapy stems, in part, from the contraction of the family unit; extended family members are no longer available to provide the needed emotional support and guidance during the mourning period. REFERENCES Bachman B. The development of a sustainable, community-supported children’s bereavement camp. OMEGA J Death Dying Bereavement. 2013; 67:21. Bolton JM, Au W, Walld R, Chateau D, Martens PJ, Leslie WD, Enns MW, Sareen J. Parental bereavement after the death of an offspring in a motor vehicle collision: a population-based study. Am J Epidemiol. 2014;179(2):177--185. Corr CA, Corr DM. Death & Dying, Life & Living. 7th ed. Belmont, CA: Wadsworth; 2013. Kaplow JB, Saunders J, Angold A, Costello EJ. Psychiatric symptoms in bereaved versus nonbereaved youth and young adults: A longitudinal epidemiological study. J Am Acad Child Adol Psych. 2010;49:1145. King M, Vasanthan M, Petersen I, Jones L, Marston L, Nazareth I. Mortality and medical care after bereavement: A general practice cohort study. PLoS ONE. 2013;8. Lerning MR, Dickinson GE. Understanding Death, Dying and Bereavement. 7th ed. Stamford, CT: Cengage Learning; 2010. Lichtenthal WG, Neimeyer RA, Currier JM, Roberts K, Jordan N. Cause of death and the quest for meaning after the loss of a child. Death Stud. 2013;37:311. Maple M, Edwards HE, Minichiello V, Plummer D. Still part of the family: The importance of physical, emotional, and spiritual memorial places and spaces for parents bereaved through the suicide death of their son or daughter. Mortality. 2013;18:54. Neimeyer RA, ed. Techniques of Grief Therapy: Creative Practices for Counseling the Bereaved. New York: Routledge; 2012. Qualls SH, Kasl-Godley JE, eds. End-of-Life Issues, Grief, and Bereavement: What Clinicians Need to Know. Hoboken, NJ: John Wiley & Sons; 2011. Schachter SR, Holland JC. Loss, grief, and bereavement: Implications for family caregivers and health care professionals of the mentally ill. In: Talley RC, Fricchione GL, Druss BG, eds. The Challenges of Mental Health Caregiving. New York: Springer Science+Business Media; 2014:145. Servaty-Seib HL, Taub DJ. Bereavement and college students: The role of counseling psychology. Counseling Psychol. 2010;38:947. Stroebe M, Schut H, van den Bou J, eds. Complicated Grief: Scientific Foundations for Health Care Professionals. New York: Routledge; 2013.

02 - 34.2 Palliative Care

34.2 Palliative Care

Zisook S, Shear MK, Irwin SA. Death, dying, and bereavement. In: Sadock BJ, Sadock VA, Ruiz P, eds. Kaplan & Sadock’s Comprehensive Textbook of Psychiatry. 9th edition. Philadelphia: Lippincott Williams & Wilkins; 2009:2378. 34.2 Palliative Care Psychological symptoms are nearly universal at the end of life. Psychiatric syndromes occur with an increased but definable frequency and have a different age and gender distribution. For example, anxiety and depression are as common in men as in women. Psychiatric classification remains an important framework on which to base clinical observations, but it was not designed with dying patients in mind. Hence, for such patients, it is pragmatically useful to think of a few syndromes for which this exists. The most common ones are anxiety states, depressive states, and confusional states. These frequently coexist and overlap. Rarely, specific phobias of needles, enclosures, and the like may interfere with comfort and should be addressed, adapting the usual treatments to the patient’s medical status. Occasionally, an emotional crisis or exacerbation of symptoms can be identified as an adjustment disorder, but it is occurring against the backdrop of other serious symptoms, so technically it does not meet diagnostic criteria. However, this should not prevent the consultant from identifying the precipitating factor and defusing the response in the usual ways. Major psychotic disorders become submerged by the increasing symptomatology of the active dying process and only require specific attention when the patient is not actively dying and when the psychotic symptoms are clearly separate from and superimposed on the symptoms of the illness. PREVALENCE Much of the research on prevalence has been done in cancer and AIDS and shows a marked increase of psychiatric conditions near the end of life. Severe depressive symptoms rose from 25 to 77 percent in a sample of hospitalized cancer patients, although stricter criteria find 15 percent with major depression and another 15 percent having severe depressive symptoms. The prevalence of delirium rises from a range from 25 to 40 percent to as high as 85 percent with increasingly advanced disease. The association of psychiatric symptoms with pain was demonstrated in one of several consistent studies in which 39 percent of patients with a psychiatric diagnosis reported significant pain compared with 19 percent for those without a psychiatric diagnosis. In a sample of inpatients with AIDS, 65 percent had an organic mental disorder, and 27 percent had major depression. The financial cost of psychiatric disorders can be inferred from a study in which patients with a psychiatric diagnosis remained in the hospital 60 days longer than those without a psychiatric diagnosis. Most commonly, terminally ill patients demonstrate an intertwining of anxiety and depression. These are difficult to tease apart, and the term negative affect has been suggested to define them as a symptom complex. It is hard not to feel grief at what is being lost and fear about the ultimate unknown. Individuals whose deep faith in an afterlife animates their spirit are an exception, and, even among them, many describe

coexisting regret at the loss of their temporal life and its furnishings. GENERAL TREATMENT PRINCIPLES Because improved quality of life is the primary goal, pharmacological treatment and any other measures that bring symptom relief should be instituted rapidly while an integrated plan for psychological and family interventions is being designed and set into motion. Psychiatric syndromes in this group are often secondary to medical conditions; hence, an etiological diagnosis often yields useful clues to prevention and improved management. It should be sought simultaneously as long as the search is in line with treatment goals. ANXIETY IN PATIENTS WITH ADVANCED DISEASE Anxiety can be the presenting symptom for almost all medical disorders and can occur as a side effect from many medications. However, in patients with advanced disease, it usually presents with somatic symptoms, such as restlessness, hyperactivity, tachycardia, gastrointestinal (GI) distress, nausea, insomnia, shortness of breath, numbness, or tremor. It lowers the threshold for pain, worsens functional impairment, and increases the distress experienced in all comorbid conditions. It often interferes with the patient’s ability to cooperate with other treatments or to relate optimally with loved ones. Patients refer to fear, worry, apprehension, or ruminations more often than to anxiety per se. Mr. S, a 50-year-old physical therapist with newly diagnosed advanced lung cancer, was noted by his family to be anxious to the point of having panic symptoms when his wife would leave his bedside to attend to chores. He would start hyperventilating, would feel short of breath, would become restless and unable to concentrate on anything, and would be overwhelmed with morbid ruminations about his future. He was upset and felt guilty at having become overly dependent on his wife. He was taught relaxation and breathing exercises and was treated with clonazepam (Klonopin), which brought about a marked resolution of his anxiety. Mr. S felt more relaxed, less anxious, and more resilient and became able to withstand periods of solitude without difficulty. (Courtesy of Marguerite Lederberg, M.D.) DEPRESSION IN PATIENTS WITH ADVANCED DISEASE Depressive symptoms are also common in advanced disease and are associated with the same existential factors found with anxiety. Studies have found a prevalence ranging from 9 percent, using the strictest criteria, to 58 percent, with less demanding ones. Risk factors include a previous history or a family history. Having a way of differentiating somatic effects of disease from the neurovegetative criteria of major depression is especially daunting in terminally ill patients.

Table 34.2-1 describes the Endicott Substitution Criteria, which have been found to perform as well as the DSM criteria for depression and go further in that they also reflect the clinical observation that classically described depressive thoughts and feelings are not universal in terminally ill patients and, when present, reflect depression just as they do in physically healthy patients. Table 34.2-1 Endicott Substitution Criteria for Depression Although there are not many studies on the treatment of depression in terminally ill individuals, the available studies and a large body of clinical experience with medically ill patients show that the pharmacological treatment of depression can be useful even when definable medical causes exist and even in the last days of life. A patient with diabetes and end-stage renal disease who had been on dialysis for 2 years was diagnosed with depression with marked insomnia and was started on 15 mg by mouth every day of mirtazapine, which helped her sleep immediately and showed an antidepressant effect within 3 weeks. Four weeks later, she was admitted to the hospital in congestive heart failure for what was to be her terminal admission. She did not wish to give up the antidepressant but now felt oversedated and wished that she could be more alert during the day to interact with her loved ones. She was started on methylphenidate 5 mg by mouth twice daily, after which she was more alert, engaged, and communicative with her family. On her death, her family was grateful to have been able to connect with her until the end. CONFUSIONAL STATES IN PATIENTS WITH ADVANCED DISEASE The prevalence of delirium rises to 85 percent in patients with advanced disease. If one includes the last hours of life, it nears 100 percent unless the patient lapses rapidly into coma or dies of an acute event, such as pulmonary embolus. Acute events are always unexpected and traumatize the survivors even though they knew full well that the patient was near the end of life. Some patients slip into an irreversible coma, leaving families in a bedside vigil, which may actually give them a period of adaptation before the final instant of death. However, for some 75 to 85 percent of patients, death is associated with a period of delirium. Patients frequently experience some disorientation, impaired memory, concentration,

and altered arousal as they become increasingly ill. These symptoms may remain mild or may be the harbingers of full delirium. Clinicians should be aware that mild and early signs of delirium are often mistaken for depression, anxiety, and poor coping. A psychiatric consultation was sought to evaluate depression in a 56-year-old practicing attorney with pancreatic cancer. His moderately severe back pain was being treated with morphine. The patient was noted by the inpatient staff to be more withdrawn, disengaged, and quiet, making poor eye contact and sleeping most of the day. On examination, the psychiatric consultant found Mr. K to have disturbed arousal and to be mildly confused and disoriented. His speech was slow and his thought process disorganized. Mr. K admitted to intermittently experiencing visual hallucinations that he had been too embarrassed to report earlier to the nursing staff. Mr. K was diagnosed with a hypoactive delirium secondary to opioid medications. He was treated with a low dose of olanzapine, 2.5 mg at bedtime. Mr. K’s sensorium improved dramatically. He became alert, fully oriented, and better related, without any perceptual disturbances or thought disorder. This was accomplished without needing to decrease his much needed pain medications. DISEASE-SPECIFIC CONSIDERATIONS Different illnesses bring special issues. For example, a patient on dialysis can opt for death three times a week and is more vulnerable to acting on feelings of depression, anger, hopelessness, and reactions to family neglect or conflict. Patients with cancer must acknowledge possible death while hoping for a cure or remission. Treatment decisions in the face of disease that is less and less treatable become increasingly difficult and can cause acute anxiety. Stem cell transplant patients experience high levels of anxiety and depression because they are getting a last chance with high stakes and high risks. The availability of organ transplants has created a large population of patients who wait knowing that they may die while waiting for a cure that could be just around the corner. Neurodegenerative disorders are associated with increasing physical disability and dependence. When there is associated loss of cognitive faculties, the problems may be behavioral. Otherwise, depression is a frequent, although not inevitable, problem. Many patients state that they will not tolerate complete immobility and dependence, yet when the time comes, they go on life supports and stay on them. It has been shown in several settings that as patients become sicker, they accept an increasingly limited quality of life as worth living and opt for more onerous, less promising treatments if they offer even a small chance of help. PATIENT–FAMILY UNIT The intensity of family relationships becomes even greater during the terminal period.

The response of family members can be a conspiracy of silence. Nothing is sadder than a bedside where family members are tense and silent because they want to protect the patient by not talking about dying and the patient is tense and silent because he or she is protecting the family by not talking about things that will upset them. Instead of closeness, expressions of gratitude, apologies, reminiscences, and farewells, there is distance, and the patient is dying alone even though he or she is physically surrounded by others. The psychiatrist can use family sessions to open patient–family dialogues. He or she can identify discrepant views of the illness, can deal with conflicts regarding treatment, and can explore concerns regarding an absent member, all of which undermine patient support and medical management. A major crisis, such as the imminent loss of a member, destabilizes the family structure, creating an opportunity for the psychiatrist to promote adaptive change and reconstitution. Family-centered grief therapy, which initially includes the patient and continues after the patient’s death, provides a natural setting for such interventions. When an older adolescent dropped out of college to take over her dying mother’s duties, the family subtly discouraged her return to school after her mother’s death. Psychiatric intervention allowed the patient to play a part in reorganizing family roles in a way that made it more possible for her daughter to continue her studies. DECISION POINTS, ADVANCE DIRECTIVES, PROXIES, AND SURROGATES This section reviews transitions and decisions that characterize the end of life. Transition to Palliative Care The transition to palliative care is not always clear. As soon as a diagnosis of an incurable disease is made, cure is no longer the goal of care. However, if death is distant or even if some life extension can still be obtained, the patient and family focus on this positive goal. The physician is under no illusion about the future but has the delicate task of promoting short-term gains without obliterating the awareness of what lies ahead. Only when the nearness of death is acknowledged can thoughtful decisions be made about palliative care. Where to Die? Unattended Deaths. Many traumatic or unexpected deaths become known from a catastrophic phone call. The patient is gone, but the traumatized family needs help to absorb the loss, to cope with the circumstances, and to come to some kind of closure. It is not realized how much the experience of living through the illness, the death, and the funeral rites is crucial to the normal resolution of the mourning process.

A totally unexpected death, even an understandable one, such as a heart attack, leaves an aching sense of unfinished business over and above the expected grief. If the person was the victim of a crime, obsessive thoughts may be difficult to repress, and grief may turn to unquenchable anger with profound psychological disruption. It is also difficult, if not impossible, for survivors to make peace with suicide. Emergency departments, police departments, and religious and community institutions should be equipped with a list of referral resources to help survivors of traumatic deaths. Psychiatric input can include program development and consultation to a wide range of professionals and individuals. Families must be helped to construct their own ritual whereby they acknowledge to themselves and others the finality of their loss and perhaps create a place, if not a grave, around which to center their memorializing. Attended Deaths. Patients can die in an acute hospital, in nursing homes, in hospices, and at home, with or without hospice support. Most patients still die in acute care hospitals, having received active care until shortly before they die. This may occur because death is sudden or because the family or patient needed to be in a place where “everything is being done.” Fortunately, a growing number of hospitals have palliative care teams that provide appropriate care in the acute hospital setting. Many patients die in nursing homes without the benefit of special care. This unfortunate situation could be remedied by bringing formal hospice care into nursing homes, but funding sources and turf issues need to be settled before it can become routine practice. Inpatient hospice care was the first model of care to be developed and is warmly remembered by grateful families whose multiple human needs and those of their loved one had been met in ways that they had not been trained to expect. As hospice gained acceptance, the insufficiency of inpatient beds encouraged the development of home hospice. Its existence has, in turn, encouraged more families to elect to keep dying patients at home. In a home hospice program, the patient is evaluated and accepted in the usual manner but stays at home. The patient and family receive extensive instruction about what to expect. They are helped to obtain necessary materials, taught how to use them, and helped to obtain as much home help as they need. All the while, they receive medical supervision, nursing care, and emotional support with 24-hour phone availability and routine daily contacts. Without this kind of help, a good death at home can be difficult to achieve. With it, patients feel safe from the abandonment that is so commonly feared, and families feel safe from the terror of an unmanageable event. The families of these patients work hard, but they are more likely to feel competent and in control. They experience more of a sense of achievement and less of the gnawing sense of inadequacy that is otherwise common. CARING FOR THE DYING PATIENT Marguerite S. Lederberg, M.D., at Memorial Sloan-Kettering Cancer Center in New York makes the following observation: A dying human being whose physical, social, emotional, and spiritual needs are being effectively attended to seldom demands to be helped to commit suicide, and the family members—given proper help and support—derive a deep sense of peace from having helped their loved one to die feeling loved and secure. One of the most important tasks for a physician caring for a dying patient is to determine when the time for curative care has ceased. It is only then that palliative care can begin. Some physicians are so upset by death that they are reluctant to use

palliative methods; rather, they continue to treat the patient knowing that efforts are futile. Or they resort to using so-called heroic methods that do not prevent death and that may produce needless suffering. Ideally, physicians should strive to extend life and decrease suffering; at the same time, they must accept death as a defining characteristic of life. Some physicians, however, have developed dysfunctional attitudes about death, which have been reinforced throughout their lives by their experiences and training. It has been postulated that doctors are more frightened of death than members of other professional groups and that many enter the study of medicine so they may gain control of their own mortality using the defense mechanism of intellectualization. Risk factors that can interfere with a physician’s ability to care optimally for dying patients are listed in Table 34.2-2. These factors range from overidentifying with the patient to being fearful of death as mentioned. Table 34.2-2 Risk Factors for the Development of Aversive Reactions in Physicians Physicians able to deal with death and dying are able to communicate effectively in several areas: diagnosis and prognosis, the nature of terminal illness, advance directives about life-sustaining treatment, hospice care, legal and ethical issues, grief and bereavement, and psychiatric care. In addition, palliative care physicians must be skilled in pain management, especially in the use of powerful opioids—the gold standard of drugs used for pain relief. In 1991, the American Board of Pain Medicine was established to ensure that physicians treating patients in pain were both qualified to do so and were kept up to date on the latest advances in the field. COMMUNICATION After a diagnosis and prognosis have been made, physicians need to talk to the patient and the patient’s family. Formerly, doctors subscribed to a conspiracy of silence, believing that their patient’s chances for recovery would improve if they knew less because news of impending death might bring despair. The current practice is now one of honesty and openness toward patients; in fact, the question is not whether to tell the

patient but when and how. In 1972, the American Hospital Association drafted the Patient’s Bill of Rights, declaring that patients have the “right to obtain complete, current information regarding diagnosis, treatment and prognosis in terms the patient can be reasonably expected to understand.” Breaking Bad News When breaking news of impending death to the patient, as when relating any bad news, diplomacy and compassion should be the guiding principles. Often, bad news is not completely related during one meeting but rather is absorbed gradually over a series of separate conversations. Advance preparations, including scheduling sufficient time for the visit; researching pertinent information, such as test results and facts about the case; and even arranging furniture appropriately can only make the patient feel more comfortable. If possible, these conversations should take place in a private, suitable space with the patient on equal terms with the physician (i.e., the patient dressed and the physician seated). If it is possible and desired by the patient, the patient’s spouse or partner should be present. The treating physician should explain the current situation to the patient in clear, simple language even when speaking to highly educated patients. Information may need to be repeated or additional meetings may be necessary to communicate all of the information. A gentle, sensible approach will help modulate the patient’s own denial and acceptance. At no time should physicians take their patient’s angry comments personally, and they should never criticize the patient’s response to the bad news. Physicians can signal their availability for honest communication by encouraging and answering questions from patients. Estimates on how long a patient has to live are usually inaccurate and thus should not be given, or given with that caveat. Also, physicians should make it clear to their patients that they are willing to see them through until death occurs. Ultimately, physicians must choose how much information to give and when on the basis of each patient’s needs and capacities. The same general approaches apply as physicians seek to comfort members of the patient’s family. Helping family members deal with feelings about the patient’s illness can be just as important as comforting the patient because family members are often the main source of emotional support for patients. Telling the Truth Tactful honesty is the doctor’s most important aid. Honesty, however, need not preclude hope or guarded optimism. It is important to be aware that if 85 percent of patients with a particular disease die in 5 years, 15 percent are still alive after that time. The principles of doing good and not doing harm inform the decision of whether to tell the patient the truth. In general, most patients want to know the truth about their condition. Various studies of patients with malignancies show that 80 to 90 percent want to know their diagnosis. Doctors, however, should ask patients how much they want to know because some persons do not want to know all the facts about their illness. Such patients, if told the truth, deny that they ever were told, and they cannot participate in end-of-life decisions, such as the use of life-sustaining equipment. The patients who openly request that they

not be given “bad news” are often those who most fear death. Physicians should deal with these fears directly, but if the patient still cannot bear to hear the truth, someone closely related to the patient must be informed. Informed Consent In the United States, informed consent is legally required for both conventional and experimental treatment. Patients must be given sufficient information about their diagnosis, prognosis, and treatment options to make knowledgeable decisions. This includes discussion of potential risks and benefits, available alternative treatments, and the results of not receiving treatment. This approach may come at some psychological cost; severe anxiety and occasional psychiatric decompensation can occur when patients feel overburdened by demands to make decisions. Nevertheless, patients respond best to doctors who explain the various options in detail. Physicians must be prepared to deal with difficult questions posed by patients. Some of them are listed in Table 34.2-3. Table 34.2-3 Some Difficult Questions from Patients End-of-life discussions are challenging, especially because they can influence how patients make informed choices. TERMINAL CARE DECISIONS Modern society is poorly equipped to cope with the life-and-death decisions spawned by technology. When it first emerged, cardiopulmonary resuscitation was enthusiastically supported by the medical profession. It was endowed with magical power and eventually became a ritualized rite rather than an optional medical treatment. That practice played into the therapeutic activism characteristic of many physicians. By the end of the 20th century, however, a countermovement began. First, the right to refuse treatment was established, largely because of synergy between the consumer movement and the bioethics movement, with its emphasis on patient autonomy. Next, the legality of DNR orders and the moral equivalence of stopping and not starting treatment were established. The medical profession was less enthusiastic than the public about these changes, perhaps because practitioners know too well the emotional ambiguities that

surround death and must repeatedly experience them. Brain Death and Persistent Vegetative State In an attempt to deal with these ambiguities, the concept of brain death emerged. Brain death is associated with the loss of higher brain functions (e.g., cognition) and all brain stem function (e.g., pupillary and reflex eye movement), respiration, and gag and corneal reflexes. Determination of brain death is generally accepted criterion for death. Some clinicians advocate an absence of brain waves on electroencephalography (EEG) to confirm the diagnosis. Persistent vegetative state was defined by the American Academy of Neurology as a condition in which no awareness exists of self or environment associated with severe neurological damage (Table 34.2-4). Medical treatment provides no benefits to patients in a persistent vegetative state and after the diagnosis is established, DNR and do not intubate (DNI) orders can be followed and life-sustaining methods (e.g., feeding tubes, ventilators) can be removed. Table 34.2-4 Persistent Vegetative State In 1976, the case of Karen Quinlan made international headlines when her parents sought the assistance of a judge to discontinue the use of a ventilator in their daughter, who was in a persistent vegetative state. Ms. Quinlan’s physician had refused her parents’ request to remove the ventilator because, they said, they feared that they might be held civilly or even criminally liable for her death. The New Jersey Supreme Court ruled that competent persons have a right to refuse life-sustaining treatment and that this right should not be lost when a person becomes incompetent. Because the Court believed that the physicians were unwilling to withdraw the ventilator because of the fear of legal liability, not precepts of medical ethics, it devised a mechanism to grant the physicians prospective legal immunity for taking this action. Specifically, the New Jersey Supreme Court ruled that after a prognosis, confirmed by a hospital ethics committee, that “no reasonable possibility of a patient returning to a cognitive, sapient state,” exists, life-sustaining treatment can be removed, and no one involved, including the physicians, can be held civilly or criminally responsible for the death.

The publicity surrounding the Quinlan case motivated two independent developments: It encouraged states to enact “living will” legislation that provided legal immunity to physicians who honored patients’ written “advance directives” specifying how they would want to be treated if they ever became incompetent, and it encouraged hospitals to establish ethics committees that could attempt to resolve similar treatment disputes without going to court. (Annas GJ. “Culture of life” politics at the bedside. N Eng J Med. 2005;352:16.) Advance Directives Advance directives are wishes and choices about medical intervention when the patient’s condition is considered terminal. Advance directives, which are legally binding in all 50 states, include three types: living will, health care proxy, and DNR and DNI orders. Living Will. In a living will, a patient who is mentally competent gives specific instructions that doctors must follow when the patient cannot communicate them because of illness. These instructions may include rejection of feeding tubes, artificial airways, and any other measures to prolong life. Health Care Proxy. Also known as durable power of attorney, the health care proxy gives another person the power to make medical decisions if the patient cannot do so. That person, also known as the surrogate, is empowered to make all decisions about terminal care on the basis of what he or she thinks the patient would want. Do Not Resuscitate and Do Not Intubate Orders. These orders prohibit doctors from attempting to resuscitate (DNR) or intubate (DNI) the patient who is in extremis. DNR and DNI orders are made by the patient who is competent to do so. They can be made part of the living will or expressed by the health care proxy. A sample advance directive that incorporates both a living will and a health care proxy is given in Table 34.2-5. Table 34.2-5 Advance Directive Living Will and Health Care Proxy*

The Uniform Rights of the Terminally Ill Act, drafted by the National Conference on Uniform State Laws, was approved and recommended for enactment in all states. This act authorizes an adult to control the decisions regarding the administration of lifesustaining treatment by executing a declaration instructing a physician to withhold or to withdraw life-sustaining treatment if the person is in a terminal condition and cannot participate in medical treatment decisions. In 1991, the Federal Patient SelfDetermination Act became law in the United States and required that all health care facilities (1) provide each patient admitted to a hospital with written information about the right to refuse treatment, (2) ask about advance directives, and (3) keep written

records of whether the patient has an advance directive or has designated a health care proxy. Today, patients who have left no advance directives or who are legally incompetent to do so have access to hospital ethics committees that hold active legal and ethical debates about these issues. These ethics committees are also of help to doctors, who can gain both legal and moral support when recommending that no further treatment occur. It is much easier for all parties, however, if the patient has advance directives or a proxy. Ideally, physicians should initiate discussions with patients about advance directives and proxies early even while the patient is healthy. The patient should be reminded that these early formulations can be modified but that even having preliminary advance directives will ensure that treating physicians observe the patient’s wishes in the event of an emergency. CARING FOR THE FAMILY Family members play an important role as caregivers to terminally ill patients and have needs of their own that often go unrecognized. Their responsibilities can be overwhelming, especially if only one family member is available or if family members themselves are infirm or elderly. Table 34.2-6 lists some family caregiving tasks. Many of these tasks require long hours of work or supervision that can lead to physical and emotional fatigue. One study of caregivers reports that 25 to 30 percent lost their jobs and more than half moved to lower paying jobs to accommodate the need for flexibility. The highest stress level was found in families who cared for a terminally ill patient at home, especially when death occurs in the home, and realized in retrospect that they would have preferred an environment in which death occurs in the presence of skilled caretakers. Table 34.2-6 Tasks of Family Members of Dying Individuals Dying at Home Depending on the patient’s wishes and the nature of his or her disease, the choice to die

at home is one that should be explored. Although it is more burdensome on a family than dying in a hospital or hospice, death at home can be a welcome alternative for the patient and family seeking to spend quality time together. A home care team can assess a home for its suitability and suggest ways to facilitate activities of daily living, including modifications to furniture; hospital bed leasing; and installation of assistive devices, such as handrails and commodes. The family’s care can be supplemented with house calls by physicians, nurses, therapists, and chaplains. In any case, the family must know what their responsibilities are and must be well prepared to care for the patient. Recently, hospice home care was approved by Medicare and is being more widely used. Family therapy sessions allow family members to explore feelings about death and dying. They serve as a forum in which anticipatory grief and mourning can take place. The ability to share feelings can be cathartic, especially if guilt is involved. Family members often have to deal with feelings of guilt about past interactions with the dying patient. Family sessions also help to achieve consensus about the patient’s advance directives. If family members disagree about the patient’s wishes, the medical staff may be unable to act. In such cases, legal action may be needed to resolve family disputes about what course of action to pursue. PALLIATIVE CARE Palliative care is the most important part of end-of-life care. It refers to providing relief from the suffering caused by pain or other symptoms of terminal disease. Although this is most commonly associated with analgesic drug administration, many other medical interventions and surgical procedures fall under the umbrella of palliative care because they can make the patient more comfortable. Monitors and their alarms, peripheral and central lines, phlebotomy, measurement of signs, and even supplemental oxygen are usually discontinued to allow the patient to die peacefully. Relocating the patient to a quiet, private room (as opposed to an intensive care unit) and allowing family members to be present is another very important palliative care modality. The shift from active, curative treatment to palliative care is sometimes the first tangible sign that the patient will die, a transition that is emotionally difficult for everyone concerned about the patient to accept. The discontinuation of machines and measurements, which up until this point have been an integral part of the hospital experience, can be extremely disconcerting to the patient, family members, and even other physicians. Indeed, if these parties are not active in planning this transition, it can easily seem that persons have given up on the patient. Because of this difficulty, palliative care is sometimes avoided altogether (i.e., curative treatment is continued until the patient dies). This approach is likely to cause problems if it is adopted merely to avoid the reality of impending death. A wellnegotiated transition to palliative care often decreases anxiety after the patient and family go through an appropriate anticipatory grief reaction. Furthermore, a positive emotional outcome is much more likely if the physician and staff project a conviction that palliative care will be an active, involved process, without hint of withdrawal or

abandonment. When this does not occur or when the family cannot tolerate the transition, the ensuing stress frequently results in a need for psychiatric consultation. A 36-year-old physician with end-stage leukemia was seen in psychiatric consultation because he reported seeing the “angel of death” at the foot of his hospital bed. He described the experience as frightening and inexplicable. The consultant asked the patient, “Are you afraid that you are going to die?” That was the first time anyone had mentioned death or dying in any context to the patient. He welcomed the opportunity to talk openly about his fears to the medical staff and to his family and eventually died a peaceful death. Psychiatric consultation is indicated for patients who become severely anxious, suicidal, depressed, or overtly psychotic. In each instance, appropriate psychiatric medication can be prescribed to provide relief. Patients who are suicidal do not always have to be transferred to a psychiatric service. An attendant or nurse can be assigned to the patient on a 24-hour basis (one-on-one coverage). In such instances, the relationship that develops between the observer and the patient may have therapeutic overtones, especially with patients whose depression is related to a sense of abandonment. Patients who are terminal and who are at high risk for suicide are usually in pain. When pain is relieved, suicidal ideation is likely to diminish. A careful evaluation of suicide potential is required for all patients. A premorbid history of past suicide attempts is a high risk factor for suicide in terminally ill patients. In patients who become psychotic, impaired cognitive function secondary to metastatic lesions to the brain must always be considered. Such patients respond to antipsychotic medications, and psychotherapy may also be of use. PAIN MANAGEMENT Types of Pain Dying patients are subject to several different kinds of pain, summarized in Table 34.27. The distinctions are important because they call for different treatment strategies; whereas somatic and visceral pain are responsive to opiates, neuropathic and sympathetically maintained pain may require adjuvant medications in addition to opiates. Most patients with advanced cancer, for example, have more than one kind of pain and require complex treatment regimens. Table 34.2-7 Types of Pain

Treatment of Pain It cannot be overemphasized that pain management should be aggressive, and treatment should be multimodal. In fact, a good pain regimen may require several drugs or the same drug used in different ways and administered via different routes. For example, intravenous morphine can be supplemented by self-administered oral “rescue” doses, or a continuous epidural drip can be supplemented by bolus intravenous doses. Transdermal patches may provide baseline concentrations in patients for whom intravenous or oral intake is difficult. Patient-controlled analgesia systems for intravenous opiate administration result in better pain relief with lower amounts dispensed than in staff-administered dosing. Opioids commonly cause delirium and hallucinations. A frequent mechanism of psychotoxicity is the accumulation of drugs or metabolites whose durations of analgesia are shorter than their plasma half-lives (morphine, levorphanol [LevoDromoran], and methadone [Dolophine]). Use of drugs such as hydromorphone (Dilaudid), which have half-lives closer to their analgesic duration, can relieve the problem without loss of pain control. Cross-tolerance is incomplete between opiates; hence, several should be tried in any patient with the dosage lowered when switching drugs. Table 34.2-8 lists opioid analgesics. Table 34.2-8 Opioid Analgesics for Management of Pain

The benefits of maintenance analgesia administration in terminally ill patients compared with as-needed administration cannot be overemphasized. Maintenance dosing improves pain control, increases drug efficiency, and relieves patient anxiety, but as-needed orders allow pain to increase while waiting for the drug to be given. Moreover, as-needed analgesia administration perversely sets up the patient for staff complaints about drug-seeking behavior. Even when maintenance treatment is used, extra doses of medication should be available for breakthrough pain, and repeated use of these medications should signal the need to raise the maintenance dose. Depending on their previous experiences with opioid analgesics and their weight, it is not unusual for some patients to require 2 g or more of morphine per day for relief of symptoms. Knowing doses of different drugs and different routes of administration is important to avoid accidental undermedication. For example, when changing a patient from intramuscular to oral morphine use, the intramuscular dose must be multiplied by 6 to avoid causing the patient pain and provoking drug-seeking behavior. Many adjuvant drugs used for pain are psychotropics with which psychiatrists are familiar, but in some cases, their analgesic effect is separate from their primary psychotropic effect. Commonly used adjuvants include antidepressants, mood stabilizers (e.g., gabapentin) phenothiazines, butyrophenones, antihistamines, amphetamines, and steroids. They are particularly important in neuropathic and sympathetically maintained pain, for which they can be the mainstay of treatment. Other developments in pain management include more intrusive procedures, such as nerve blocks or the use of continuous epidural infusions. Additionally, radiation therapy, chemotherapy, and even surgical resection can be considered as pain management modalities in palliative care. Short courses of radiotherapy or chemotherapy can be used to shrink tumors or manage metastatic lesions that cause pain or impairment. In patients with end-stage Hodgkin’s disease, for example, systemic chemotherapy can improve the patient’s quality of life by decreasing tumor burden. Surgical resection of invasive tumors, most notably breast carcinomas, can be useful for the same reason.

PALLIATION OF OTHER SYMPTOMS Symptom management is a high priority in palliative care. Patients are often more concerned about the day-to-day distress of their symptoms than they are about their impending death, which may not be as real to them. Table 34.2-9 lists common end-oflife symptoms. A comprehensive approach to palliation involves attending to these endof-life symptoms as well as pain. Sources of distress include psychiatric symptoms, such as anxiety, and physical symptoms. Foremost among physical symptoms are those involving the GI system, including diarrhea, constipation, anorexia, nausea, vomiting, and bowel obstruction. Other important symptoms include insomnia, confusion, mouth sores, dyspnea, cough, pruritus, decubitus ulcers, and urinary frequency or incontinence. Caretakers should follow these symptoms closely and establish appropriate early and aggressive care for these symptoms before they become burdensome. Table 34.2-9 Common End-of-Life Symptoms/Signs An effective treatment for nausea and vomiting associated with chemotherapy is the use of Δ-tetrahydrocannabinol (THC), the active ingredient of marijuana. Oral synthetic cannabinoid, dronabinol (Marinol) is used in 1- to 2-mg doses every 8 hours. The use of marijuana cigarettes to deliver THC is believed to be more effective than pills. Proponents say that its absorption is faster and antiemetic properties are more potent via the pulmonary system. Repeated attempts to legalize marijuana cigarettes for medical use have met with only limited success in this country. A 47-year-old man with incurable lung cancer who had been treated unsuccessfully with chemotherapy and radiotherapy had been suffering from intractable dyspnea for

1 week. His family, nursing, and other staff were increasingly upset by his difficulty breathing and his pleas for relief. The attending physician refused to prescribe anything stronger than codeine. The palliative care team at the hospital intervened at the family’s request. Relief was obtained with the use of 5 to 10 mg of an intravenous bolus of morphine every 15 minutes. When the patient became comfortable, a continuous drip of intravenous morphine was instituted, complemented by subcutaneous morphine as needed. The American Medical Association supports the position that patients with a terminal condition require substantial doses of opioids on a regular basis and should not be denied drugs for fear of producing physical dependence. A similar view is endorsed in Goodman and Gilman’s the Pharmacological Basis of Therapeutics as follows: The physician should not wait until the pain becomes agonizing; no patient should ever wish for death because of a physician’s reluctance to use adequate amounts of effective opioids. Accordingly, physicians who treat the terminally ill should not be intimidated by legal oversight. This is especially important because the Drug Enforcement Administration (DEA) is considering examining the prescribing practices of physicians who care for terminally ill patients. In a strongly worded editorial (New England Journal of Medicine, January 5, 2006), the DEA was criticized for its involvement in what constitutes acceptable medical practice for dying patients because the DEA’s federal mandate is limited to combating criminal substance abuse, not monitoring the care of dying patients. Physicians must be vigilant and forceful in protecting their rights to administer opioids to treat patients for intractable pain. HOSPICE CARE In 1967, the founding of St. Christopher’s Hospice in England by Cicely Saunders launched the modern hospice movement. Several factors in the 1960s propelled the development of hospices, including concerns about inadequately trained physicians, inept terminal care, gross inequities in health care, and neglect of elderly adults. Life expectancy had increased, and heart disease and cancer were becoming more common. Saunders emphasized an interdisciplinary approach to symptom control, care of the patient and family as a unit, the use of volunteers, continuity of care (including home care), and follow-up with family members after a patient’s death. The first hospice in the United States, Connecticut Hospice, opened in 1974. By 2000, more than 3,000 hospices were open in the United States. Round-the-clock pain control with opioids is an essential component of hospice management. In 1983, Medicare began reimbursing hospice care. Medicare hospice guidelines emphasize home care, with benefits provided for a broad spectrum of physician, nursing, psychosocial, and spiritual services at home or, if necessary, in a hospital or nursing home. To be eligible, the patient must be physician certified as having 6 months or less to live. By electing hospice care, patients

agree to receive palliative rather than curative treatment. Many hospice programs are hospital-based, sometimes in separate units and sometimes in the form of hospice beds interspersed throughout the facility. Other program models include free-standing hospices and programs, hospital-affiliated hospices, nursing home hospice care, and home care programs. Nursing homes are the site of death for many elderly patients with incurable chronic illness, yet dying nursing home residents have limited access to palliative and hospice care. Families generally express satisfaction with their personal involvement in hospice care. Savings with hospice care vary, but home care programs generally cost less than conventional institutional care, particularly in the final months of life. Hospice patients are less likely to receive diagnostic studies or such intensive therapy as surgery or chemotherapy; however, a new trend is to allow treatment programs to continue while the patient remains in the hospice. Hospice care is a proven, viable alternative for patients who elect a palliative approach to terminal care. In addition, hospice goals of dignified, comfortable death for terminally ill patients and care for patients and families together have been increasingly adopted in mainstream medicine. NEONATAL AND INFANT END-OF-LIFE CARE Advances in reproductive medicine have increased the number of infants born prematurely as well as the number of multiple births. These advances have increased the need for life-sustaining methods of care and have made decisions about when to use palliative care more complex. Some bioethicists believe that withholding life-sustaining interventions is appropriate under certain circumstances; others maintain that life-sustaining methods should not be used at all. An extensive study of attitudes among neonatologists about end-of-life decisions found no consensus about if and when to terminate life. Most decisions to forego life-sustaining procedures for newborns concern those whose death is imminent. Even if their future quality of life is determined to be bleak, most physicians believe that some life is better than no life at all. Physicians who support withholding intensive care consider the following quality-of-life issues: (1) extent of bodily damage (e.g., severe neurological impairment), (2) the burden that a disabled child will place on the family, and (3) the ability of the child to derive some pleasure from existence (e.g., having an awareness of being alive and being able to form relationships). The American Academy of Pediatrics permits nontreatment decisions for newborns when the infant is irreversibly comatose or when treatment would be futile and only prolong the process of dying. These standards do not permit the parents to have any input in the decision-making process. In a well-publicized case in England in 2000, it was decided to surgically separate conjoined twins knowing that one would die as a result of the procedure and despite the objections of the parents, who believed that nature should take its course even if that led to the death of both infants. Neonatal end-oflife decisions remain in a state of limbo. No clear-cut criteria exist about which patients should receive intensive care and which should receive palliative care. CHILD END-OF-LIFE CARE After accidents, cancer is the second most common cause of death in children. Although many childhood cancers are treatable, palliative care is necessary for children with cancers that are not. Children require more support than adults in

coping with death. On average, a child does not view death as permanent until the age of about 10 years; before that, death is viewed as a sleep or separation. Therefore, children should be told only what they can understand; if they are capable, they should be involved in the decision-making process about treatment plans. Assurances that patients are pain free and physically comfortable are just as important for children as they are for adults. A unique aspect of end-of-life care in children involves addressing their fear of being separated from their parents. It is helpful to have parents participate in end-of-life care tasks within their capacities. Family sessions with the child in attendance allow feelings to emerge and questions to be answered. SPIRITUAL ISSUES There is increasing awareness of the importance of this area to patients, families, and many staff members as well. Several studies have shown that religious beliefs are often associated with mature and active coping methods, and the field of psychological and spiritual interfaces in terminally ill patients is spawning a whole new area of psychological research within the traditional medical establishment. The psychiatric consultant should inquire about faith, its meaning, associated religious practices, and impact on the coping response. It can be a source of strength or guilt at all stages of the disease, ranging from the earliest “What did I do to cause this?” through “Will God give me only what I can carry?” to the poignant life review of the late stage. It is often a primary factor in the reactions to suicidality and in attitudes toward terminal care decisions. Mental health professionals should deal with these areas in an unselfconscious and noncondescending manner and work to help patients fully integrate this aspect of their personality into their current crisis. The professional should also work in harmony with the patient’s spiritual guide if one is available. Sometimes an experienced, effective chaplain working with the appropriate patient can achieve positive results more directly than any psychotherapy. The following case exemplifies how creative pastoral care can relieve suffering. A young woman was admitted to a hospice in a terminal state. She was experiencing a severe depression, which she attributed to not being able to see her oldest daughter receive her first communion. Arrangements were made for a ceremonial communion for her daughter to take place at the hospice. After the ceremony, the patient’s mood improved markedly as one of her fears was alleviated and a religious need was satisfied. As her mood improved, she was able to address other unresolved issues and have quality visits with her children in her remaining days. (From O’Neil MT. Pastoral care. In: Cimino JE, Brescia MJ, eds. Calvary Hospital Model for Palliative Care in Advanced Cancer. Bronx, NY: Palliative Care Institute; 1998, with permission.) ALTERNATIVE AND COMPLEMENTARY MEDICINE Many patients, when they are told they are terminally ill, seek alternative treatments,

ranging from innocuous programs aimed at enhancing general health to more aggressive, harmful, or fraudulent regimens. Although most patients combine the alternative and the traditional, a substantial number favor complementary medicine as the only treatment for their disease. Complementary methods to cure terminal illness, especially cancer, emphasize a holistic approach, involving purification of the body, detoxification through internal cleansing, and attention to nutritional and emotional well-being. Despite their widespread appeal, not one of these methods has been demonstrated to cure cancer or prolong life, yet all have strong followings bolstered by anecdotal accounts of their efficacy. The popular metabolic therapy attributes cancer and other potentially fatal illnesses to toxins and waste materials accumulating in the body; treatment is based on reversing this process by diet, vitamins, minerals, enzymes, and colonic irrigations. Another approach includes macrobiotic diets or megavitamins to enhance the body’s capacity to destroy malignancy. In 1987, the National Research Council recommended minimizing carcinogenic substances and fat in the diet and increasing whole-grain, fruit, and vegetable consumption as preventive guidelines. Psychological approaches cite maladaptive personality and coping styles as contributors to fatal diseases; treatment consists of shaping a positive attitude. Spiritual approaches aim at achieving harmony between the patient and nature. Some groups use spirituality as a way to ward off illness, which is sometimes seen as an external evil to be exorcised. Immunotherapies have gained popularity in recent years; cancer is attributed to a defective immune system, and restoration of immunocompetency is seen as the cure. Many patients find increased strength to endure the suffering of terminal illness with the help of alternative medicine even though the course of the disease may not be affected. (For a further discussion of alternative medicine, see Chapter 24.) REFERENCES Fahy BN. Palliative care in the acute care surgery setting. In: Moore LJ, Turner KL, Todd SR, eds. Common Problems in Acute Care Surgery. New York: Springer Science+Business Media; 2013:477. Hui D, Elsayem A, De La Cruz M, Berger A, Zhukovsky DS, Palla S, Evans A, Fadul N, Palmer JL, Bruera E. Availability and integration of palliative care at US cancer centers. JAMA. 2010;303(11):1054. Jaiswal R, Alici Y, Breitbart W. A comprehensive review of palliative care in patients with cancer. Int Rev Psychiatry. 2014;26(1):87-101. Kaspers PJ, Pasman H, Onwuteaka-Philipsen BD, Deeg DJ. Changes over a decade in end-of-life care and transfers during the last 3 months of life: A repeated survey among proxies of deceased older people. Palliat Med. 2013;27:544. Kelley AS, Meier DE: Palliative care—a shifting paradigm. N Eng J Med. 2010; 363:781. Lederberg MS. End-of-life and palliative care. In: Sadock BJ, Sadock VA, Ruiz P, eds. Kaplan & Sadock’s Comprehensive Textbook of Psychiatry. 9th edition. Philadelphia: Lippincott, Williams & Wilkins; 2009:2353. Matzo M, Sherman MW, eds. Palliative Care Nursing: Quality Care to End of Life. 3rd edition. New York: Springer Publishing Company; 2013. Meir DE, Issacs SL, Hughes RG, eds. Palliative Care: Transforming the Care of Serious Illness. San Francisco: Jossey-Bass; 2010. Moore RJ, ed. Handbook of Pain and Palliative Care. New York: Springer Science+Business Media; 2013 Nuckols TK. Opioid prescribing: A systematic review and critical appraisal of guidelines for chronic pain. Ann Intern Med. 2014;1:39. Penman J, Oliver M, Harrington A. The relational model of spiritual engagement depicted by palliative care clients and caregivers. Int J Nursing Pract. 2013;19:39.

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34.3 Euthanasia and Physician-Assisted Suicide

Risse GB, Balboni MJ. Shifting hospital-hospice boundaries: Historical perspectives on the institutional care of the dying. Am J Hospice Palliat Med. 2013;19:325. Smith TJ, Temin S, Alesi ER, Abernethy AP, Balboni TA, Basch EM, Ferrell BR, Loscalzo M, Meier DE, Paice JA, Peppercorn JM, Somerfield M, Stovall E, Von Roenn JH. American Society of Clinical Oncology provisional clinical opinion: The integration of palliative care into standard oncology care. J Clin Oncol. 2012;30:880. Temel JS, Greer JA, Muzikansky A, Gallagher ER, Admane S, Jackson VA, Dahlin CM, Blinderman CD, Jacobsen J, Pirl WF, Billings JA, Lynch TJ. Early palliative care for patients with metastatic non–small-cell lung cancer. N Eng J Med. 2010;363:733. Vadivelu N, Kaye AD, Berger JM, eds. Essentials of Palliative Care. New York: Springer Science+Business Media; 2013. 34.3 Euthanasia and Physician-Assisted Suicide EUTHANASIA From the Greek term for good death, euthanasia means compassionately allowing, hastening, or causing the death of another. Generally, someone resorts to euthanasia to relieve suffering, maintain dignity, and shorten the course of dying when death is inevitable. Euthanasia can be voluntary if the patient has requested it or involuntary if the decision is made against the patient’s wishes or without the patient’s consent. Euthanasia can be passive—simply withholding heroic lifesaving measures—or active— deliberately taking a person’s life. Euthanasia assumes that the intent of the physician is to aid and abet the patient’s wish to die. Arguments for euthanasia revolve around patient autonomy and dignified dying. One of the most dramatic ways patients can exercise their right to self-determination is by asking that life-sustaining treatment to be withdrawn. If the patient is mentally competent, physicians must respect such wishes. Proponents of active, voluntary euthanasia argue that the same rights should be extended to patients who are not on life-sustaining treatment but also choose to have their physicians help them die. Opponents of euthanasia also provide strong ethical and medical justification for their position. First, active euthanasia, even if the patient voluntarily requests it, is a form of killing and should never be sanctioned. Second, many patients who request aid in dying may be suffering from depression, which, when treated, will change the patient’s mind about wanting to die. Most medical, religious, and legal groups in the United States are against euthanasia. Both the American Psychiatric Association (APA) and the American Medical Association (AMA) condemn active euthanasia as illegal and contrary to medical ethics; however, few individuals have been convicted of euthanasia. Most physicians and medical groups in other parts of the world also oppose legalizing euthanasia. In the United Kingdom, for example, the British Medical Association believes that euthanasia is “alien to the traditional ethos and moral focus of medicine” and, if legalized, “would irrevocably change the context of health care for everyone, but especially for the most vulnerable.” The World Medical Association issued the following declaration on euthanasia in October 1987:

Euthanasia, that is, the act of deliberately ending the life of a patient, even at his own request or at the request of his close relatives, is unethical. This does not prevent the physician from respecting the will of a patient to allow the natural process of death to follow its course in the terminal phase of sickness. Again, in 2002, the World Medical Association reissued a resolution condemning euthanasia as “unethical” and urging all doctors and medical associations to refrain from the practice. Similarly, the New York State Committee on Bioethical Issues issued a statement declaring its opposition to euthanasia. The committee stated that the physician’s obligation to relieve pain and suffering and to promote the dignity and autonomy of dying patients in their care, including providing effective palliative treatment, even though it may occasionally hasten death. Physicians, however, should not perform active euthanasia or participate in assisted suicide. The Committee believed that support, comfort, respect for patient autonomy, good communication, and adequate pain control would dramatically decrease the demand for euthanasia and assisted suicide. They argued that the societal risks of involving physicians in medical interventions to cause a patient’s death were too great to condone active euthanasia or physician-assisted suicide. In response to shifting public opinion and lobbying groups with different views, state laws that banned physician-assisted death in Washington State and New York were sent to the United States Supreme Court, challenging the constitutionality of these prohibitions. In June 1997, the Court unanimously held that terminally ill patients do not have the right to physician aid in dying. The ruling, however, left room for continuing debate and future policy initiatives at the state level. PHYSICIAN-ASSISTED SUICIDE In the United States, most of the debate centers on physician-assisted suicide rather than on euthanasia. Some have argued that physician-assisted suicide is a humane alternative to active euthanasia in that the patient maintains more autonomy, remains the actual agent of death, and may be less likely to be coerced. Others believe that the distinctions are capricious in that the intent in both cases is to bring about a patient’s death. Indeed, it may be difficult to justify providing a lethal dose of medication to a terminally ill patient (physician-assisted suicide) while ignoring the desperate pleas of another patient who may be even more ill and distressed but who cannot complete the act because of problems with swallowing, dexterity, or strength. Several degrees are seen to which a physician may assist the suicidal patient to end his or her life. Physician-assisted suicide can involve providing information on ways of committing suicide, supplying a prescription for a lethal dose of medication or a means of inhaling a lethal amount of carbon monoxide, or perhaps even providing a suicide device that the patient can operate. The controversy over physician-suicide came to national attention surrounding the activities of retired pathologist Jack Kevorkian, who, in 1989, provided his suicide machine to a 54-year-old woman with probable Alzheimer’s disease. After the woman

killed herself with his device, Kevorkian was charged with first-degree murder. The charges were later dismissed because Michigan had no law against physician-assisted suicide. Since that first case, Kevorkian assisted in several more suicides, often for persons he met on only a few occasions and frequently for persons who did not have a terminal illness. Claiming to have helped more than 130 people take their lives, Kevorkian was sent to prison in 1999, was released in 2006, and died in 2011. His attorneys and followers applauded his courage in easing pain and suffering; his detractors countered that he was a serial mercy killer. Opponents of Kevorkian’s methods charged that, without safeguards, consultations, and thorough psychiatric evaluations, patients may search out suicide not because of terminal illness or intractable pain but because of untreated depressive disorders. They argued that suicide rarely occurs in the absence of psychiatric illness. Finding more effective treatments for pain and depression, rather than inventing more sophisticated devices to help desperate patients kill themselves, defines compassionate and effective physician care. In 1994, Oregon passed a ballot initiative legalizing physician-assisted suicide (Death with Dignity Act), making Oregon the first state in the United States to permit assisted suicides (Table 34.3-1). An assessment of the first 4 years revealed the following: Patients dying from physician-assisted suicide represent approximately eight of 10,000 deaths. The most common underlying illnesses were cancer, amyotrophic lateral sclerosis, and chronic lower respiratory disease. The three most common end-of-life concerns were loss of autonomy (85 percent), a decreasing ability to participate in activities that made life enjoyable (77 percent), and losing control of bodily functions (63 percent). Eighty percent of the patients were enrolled in hospice programs, and 91 percent died at home. The prescribing physician was present in 52 percent of the cases. Table 34.3-1 Oregon’s Assisted Suicide Law

In 2001, Attorney General John Ashcroft attempted to prosecute Oregon doctors who helped terminally ill patients die, claiming that doctor-assisted suicide is not a legitimate medical purpose. The case was brought to the Supreme Court, which in 2006 supported the Oregon law and said the “authority claimed by the attorney general is both beyond his expertise and incongruous with the statutory purposes and design.” Since 2001, three other states—Washington (2008), Montana (2009) and Vermont (2011)—have passed laws similar to the one in Oregon. Despite the abhorrence that many physicians and medical ethicists express regarding physician-assisted suicide, poll after poll shows that as many as two thirds of Americans favor the legalization of physician-assisted suicide in certain circumstances, and evidence even indicates that the formerly uniform opposition to physician-assisted suicide within the medical community has eroded. Consistent with their positions on active euthanasia, the AMA, APA, and American Bar Association, however, continue to oppose physician-assisted suicide. Recently, the American College of Physicians– American Society of Internal Medicine (ACP-ASIM) expressed its commitment to improving care for patients at the end of life while recommending against legalization of physician-assisted suicide. The ACP-ASIM believes physician-assisted suicide raises serious ethical concerns, undermines the physician–patient relationship and the trust necessary to sustain it, alters the medical profession’s role in society, and endangers the values American society places on life, especially on the lives of disabled, incompetent, and vulnerable individuals. The American Association of Suicidology in its 1996 Report of the Committee on Physician-Assisted Suicide and Euthanasia concluded that involuntary euthanasia can never be condoned; the report also stated, however, that “intolerable, prolonged suffering of persons in extremis should never be insisted upon, against their wishes, in single-minded efforts to preserve life at all cost.” This position acknowledges that

patients can die as a result of treatment given to them for the explicit purpose of relieving suffering, but death associated with palliative care differs greatly from physician-assisted suicide in that death is not the goal of treatment and is not intentional. How to Deal with Requests for Suicide To help guide clinicians facing requests for physician-assisted suicide, the AMA’s Institute for Ethics has proposed the following eight-step clinical protocol:

1. Evaluation of the patient for depression or other psychiatric conditions that could cause disordered thought
2. Evaluation of the patient’s “decision-making competence”
3. Discussion with the patient about his or her goals for care
4. Evaluation and response to the patient’s “physical, mental, social, and spiritual suffering”
5. Discussion with the patient about the full range of treatment and care options
6. Consultation by the attending physician with other professional colleagues
7. Assurance that care plans chosen by the patient are being followed, including removal of unwanted treatment and the provision of adequate pain and symptom relief
8. Discussion with the patient explaining why physician-assisted suicide is to be avoided and why it is not compatible with the principled nature of the care protocol Psychiatrists view suicide as an irrational act that is the product of mental illness, usually depression. In almost every case in which a patient asks to be put to death, a triad exists of depression associated with an incurable medical condition that causes the patient intolerable pain. In these instances, every effort should be made to provide antidepressants or psychostimulants for depression and opioids for pain. Psychotherapy, spiritual counseling, or both may also be needed. In addition, family therapy to help with the stress of dealing with a dying patient may be necessary. Family therapy is also useful because some patients may ask to be put to death because they do not wish to be a burden to their families; others may feel coerced by their families into believing that they are, or will be, a burden and may choose death as a result. Currently, no professional codes countenance euthanasia or assisted suicide in the United States. Therefore, psychiatrists must stand on the side of responsible rescue and treatment. A distinction also is needed between major depression and suffering. The nature of suffering has not been sufficiently studied by psychiatrists. It remains the province of theologians and philosophers. Suffering is a complex mix of spiritual, emotional, and physical factors that transcends pain and other symptoms of terminal illness. Physicians are more skilled at dealing with depression than with suffering. Anatole Broyard, who chronicled his own death in his book Intoxicated by My Illness, wrote the following:

I see no reason or need for my doctor to love me nor would I expect him to suffer with me. I wouldn’t demand a lot of my doctor’s time; I just wish he would brood on my situation for perhaps five minutes, that he would give me his whole mind just once, be bonded with me for a brief space, survey my soul as well as my flesh, to get at my illness, for each man is ill in his own way. FUTURE DIRECTIONS Advances in technology bring more complex medical, legal, moral, and ethical controversies regarding life, death, euthanasia, and physician-assisted suicide. Some forms of euthanasia have found a place in modern medicine, and expansion of the boundaries of patients’ rights and their ability to choose the way they live and die are inevitable. Both patients and physicians need to be better educated about depression, pain management, palliative care, and quality of life. Medical schools and residency training programs need to give the topics of death, dying, and palliative care the attention they deserve. Society must ensure that economics, ageism, and racism do not get in the way of adequate and humane management of patients with chronic terminal illnesses. Finally, national health care policy must provide adequate insurance coverage, home care, and hospice services to all appropriate patients. If these mandates are followed, the argument for physician assistance in dying will lose much of its impact. REFERENCES Broeckaert B. Palliative sedation, physician-assisted suicide, and euthanasia: “Same, same but different”? Am J Bioethics. 2011;11:62. Canetto SS. Physician-assisted suicide in the United States: Issues, challenges, roles and implications for clinicians. In: Qualls SH, Kasl-Godley JE, eds. End-of-Life Issues, Grief, and Bereavement: What Clinicians Need to Know. Hoboken, NJ: John Wiley & Sons; 2011:263. Carvalho TB, Rady MY, Verheijde JL, JS Robert. Continuous deep sedation in end-of-life care: Disentangling palliation from physician-assisted death. Am J Bioethics. 2011;11:60. Deschepper R, Distelmans W, Bilsen J. Requests for euthanasia/physician-assisted suicide on the basis of mental suffering: vulnerable patients or vulnerable physicians? JAMA Psychiatry. 2014;71(6):617–618. Gamliel E. To end life or not to prolong life: The effect of message framing on attitudes towards euthanasia. J Health Psychol. 2013;18:693. Kimsma, Gerrit K. Physician-Assisted Death in Perspective. New York: Cambridge University Press; 2012. Kraemer F. Ontology or phenomenology? How the LVAD challenges the euthanasia debate. Bioethics. 2013;27:140. Perper JA, Cina SJ. Euthanasia, and assisted suicide: What would Hippocrates do? In: When Doctors Kill: Who, Why and How. New York: Springer Science+Business Media; 2010:159. Rady MY, Verheijde JL. Continuous deep sedation until death: Palliation or physician-assisted death? Am J Hospice Palliat Med. 2010;27:205. Raus K, Sterckx S, Mortier F. Is continuous sedation at the end of life an ethically preferable alternative to physicianassisted suicide? Am J Bioethics. 2011; 11:32. Rys S, Deschepper R, Mortier F, Deliens L, Atkinson D, Bilsen J. The moral difference or equivalence between continuous

sedation until death and physician-assisted death: Word games or war games? J Bioethic Inquiry. 2012; 9:171. Saaty TL, Vargas LG. Legalization of euthanasia. In: Models, Methods, Concepts & Applications of the Analytic Hierarchy Process. New York: Springer Science+Business Media; 2012:249. Westefeld JS, Casper D, Lewis AM: Physician-assisted death and its relationship to the human service professions. J Loss Trauma. 2013;18:539. Zisook S, Shear MK, Irwin SA. Death, dying, and bereavement. In: Sadock BJ, Sadock VA, Ruiz P, eds. Kaplan & Sadock’s Comprehensive Textbook of Psychiatry. 9th ed. Philadelphia: Lippincott Williams & Wilkins; 2009:2378.