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.