care of dying patients - chapter 5

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

"Watch with Me" The greatest fear of the dying patient is that of suffering alone and being deserted. There is less fear of a painful death than of the loneliness and alienation that may accompany it. A patient particularly dreads being abandoned by the physician in the face of death and may need increasing levels of professional support as the illness progresses. This is particularly true if family and friends are not able to cope with the deteriorating condition and begin to avoid contact, thus contributing further to the patient's feelings of loneliness and abandonment. If the patient believes that no one is available to discuss the situation openly and honestly, despair is likely to ensue. The patient's fear of the unknown is easier to cope with if his or her apprehension can be shared with a caring physician who provides comfort, support, encouragement, and even a modicum of hope. Each new problem of the dying patient should be viewed as a nuisance requiring relief or removal and approached with the vigor that one would devote to an acute, shortterm illness. When a fresh complaint arises, the patient should be reexamined and attempts made to relieve the symptom so the patient will not feel unworthy of further attention. If everyday nuisances can be controlled or lessened, the patient will believe that there is sincere concern for making her or his remaining life pleasant. The physician should give attention to details such as improving the taste of food by fixing or replacing dentures or stimulating the patient's appetite, eliminating foul odors, and suggesting occupational therapy to avoid boredom.

Visceral Pain and Smooth Muscle Spasm If smooth muscle spasms are not caused by a treatable condition, such as urinary tract infection from a nonessential Foley catheter, these are best treated with an anticholinergic agent such as dicyclomine (Bentyl) or oxybutynin (Ditropan). For severe cases, 0.6 to 1.6 mg of glycopyrrolate (Robinul) subcutaneously may be used (Storey et al., 1990). The physician must be alert for side effects such as dry mouth, constipation, and delirium

ANXIETY AND DEPRESSION If anxiety is severe enough to require drug therapy, a benzodiazepine such as lorazepam (Ativan), 0.5 to 1 mg two or three times a day, may be effective. Antidepressants such as nortriptyline (Pamelor), desipramine (Norpramin), and doxepin in low doses (25-75 mg at bedtime) have analgesic properties and can help with insomnia and agitation. Selective serotonin reuptake inhibitors (SSRIs) and serotonin-norepinephrine reuptake inhibitors (SNRIs) may also be effective. Mirtazapine may provide the advantage of improved sleep and appetite. Psychostimulants such as methylphenidate (Ritalin), 2.5 to 10 mg orally at 9 AM and 12 noon, take effect quickly and can relieve depression and pain in some terminally ill patients, especially when the prognosis is limited (Block, 2000). Quetiapine (Seroquel), an atypical antipsychotic beneficial for addressing bipolar disorder and schizophrenia, can also be used as an adjuvant antidepressant. Grief and depression may appear similarly. The key to their differentiation is whether the patient is able to function. For example, a grieving patient will still function by taking his or her children to school or going to work and will temporarily improve on seeing his or her grandchildren, but depressed patients will not function appropriately. In family members, complicated grief, also called "unresolved grief," is grief persisting more than 6 months and occurring at least 6 months after death. Normally, grief

Patients who have end-of-life conversations with their family physician have lower health care costs during the final week of life. Better communication results in better quality of life and quality of death as well as lower cost (Zhang et al., 2009). End-of-life care is often fragmented among providers, leading to a lack of continuity of care and impeding the ability to provide high-quality, interdisciplinary care. A family conference to discuss a plan of care, which would include the patient if he or she were still capable of participating, is often initiated after the patient's functional decline (Berlinger et al., 2013). Enhanced communication among patients, families, and providers is crucial to high-quality end-of-life care (National Institutes of Health, 2004).

A frank discussion of death or how long the patient is expected to live may not be necessary or even indicated. A good understanding between the physician and patient may make open disclosure unnecessary. The physician's role may be primarily one of supporting patients during the progressive, terminal course of their illness. However, the physician who is uncomfortable with the subject of death should not use such a situation as an excuse to avoid discussing the issue. The family physician's primary responsibility is to take the time to evaluate the situation, make sure the patient's true desires have been assessed correctly, and provide whatever support is needed based on the patient's concepts and needs rather than those of the physician (Table 5-1). An institution's policies should recognize that, on occasion, a health care professional may choose to withdraw from a patient on religious or other moral grounds as a conscientious objection. The institutions should accommodate for this request without compromising standards of professional care and the rights of the patients. The physician should maintain the duty of care until the patient is transferred to another professional (Berlinger et al., 2013).

SOCIAL SUPPORT AND RESOURCES IN THE COMMUNITY See eAppendix 5-1 at www.expertconsult.com. Advance Directives An advance directive is a legal document that allows competent adults to express their intentions regarding medical

An advance directive is a legal document expressing a person's preferences regarding care in the event the person becomes unable to make decisions regarding care. ■ The most important item is the appointment of a health care surrogate as the patient's proxy. ■ Advance directives vary from simple to complex but still cannot cover every possibility. ■ A variety of state-specific advance care-planning documents are available on the Internet

Pain can be physical, psychological, emotional, or spiritual. It can also be a combination of chronic, somatic, visceral, and neuropathic pain. Somatic and visceral pain account for about two thirds of patients with pain and respond to conventional opioids. About 35% of patients have some degree of neuropathic pain, a shooting or stabbing, electric shock-like pain. Chronic pain is influenced by memories of past pain and the anticipation of future pain. The fear of worsening pain may distort the patient's perception of current discomfort. Frustration and anxiety may accentuate the pain. All these factors can lower the patient's pain threshold and greatly magnify even minor disturbances (Twycross, 1993). Failure to treat the whole person often results in inadequate pain control for patients with terminal cancer. Fatigue, insomnia, anxiety, boredom, and anger all contribute to a lower threshold for pain. Rest, sleep, diversion, and companionship all help to increase the patient's tolerance for pain

Analgesics should be given in adequate amounts to provide comfort. Giving analgesic doses both regularly and on an as-needed basis is ideal for pain management. Using only as-needed doses for moderate to severe pain is suboptimal because it contributes to a lower pain threshold and a need for increasing doses to relieve the pain. When medication is given regularly in adequate doses, the anxiety and fear that accentuate pain are avoided, and lower doses of the drug are effective because the patient no longer fears recurrent or "breakthrough" pain

A relatively simple Advance Care Plan Document is available from Project GRACE (Guidelines for Resuscitation and Care at End-of-life) at www.projectgrace.org. A document that attempts to address a variety of clinical situations that may arise is the Medical Directive site at www.medicaldirective.org. This permits patients and physicians to download a scenario-based living will that includes six different scenarios to cover a variety of situations, plus a personal statement and a health care proxy. See Web Resources for additional sites and more information.

CARDIOVASCULAR IMPLANTABLE ELECTRONIC DEVICES Many patients with end-stage cardiac disease have implantable electronic devices, such as pacemakers and implantable cardioverter-defibrillators (ICDs). To better prepare patients and their families, the family physician can discuss the risks and benefits of having or discontinuing these devices before an event in which the patient has a significant decline or hospitalization. Pacemakers are considered to neither prolong nor shorten the end of life. Discontinuing a pacemaker may result in angina or dyspnea, so continuing a pacemaker at the end of life is recommended. On the other hand, ICDs cause pain with shocks and are considered to be comparable to resuscitation efforts. At the end of life, when the goal is comfort only, discontinuing the ICD is indicated (Manaouil et al., 2012). The company that

PROGNOSTICATING One of the most difficult tasks in medicine is predicting how long someone with a terminal illness will live. People enjoy repeating stories of patients who survived long after the date their doctor predicted. In most cases, however, physicians tend to be overly optimistic, and short estimates are more accurate than longer ones (Evans and McCarthy, 1985). In fact, physicians overestimate survival more than 60% of the time and underestimate it only 17% of the time (Christakis and Lamont, 2000). In addition to physicians overestimating prognosis, many patients believe their treatment at the end of their life (e.g., radiation) is intended to be curative, when in reality it is palliative. The better that physicians know their patients, the more they overestimate survival, probably hoping the best for patients they know well. The longer the physician has been in practice, the more accurate the prognosis. Most patients want optimistic physicians, but at some point, this optimism may delay palliative treatment. Attempts have been made to develop indexes (e.g., Karnofsky score) to assist the physician in making objective estimates that correlate with actual survival. However, no accurate method is currently available, largely because of the multiple variables that influence when a patient dies. A good policy is to provide a conservative estimate. It is better to have the patient and family proud that they "beat the odds" or exceeded the physician's prediction than to have the patient die earlier than anticipated.

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

symptoms fade over time, but those of complicated grief linger or worsen, resulting in a chronic state of mourning. Although complicated grief can lead to depression, it may be distinct and associated with long-term functional impairment (Prigerson et al., 1995). Parents who have not successfully worked through their grief are at increased risk of mental and physical problems 4 to 9 years later (Lannen et al., 2008).

DELIRIUM OR AGITATION Delirium or agitation is often seen in dying patients. It may result from the disinhibition of the nervous system that takes place. It is often concerning for family members because personality changes are associated with the delirium. This can result in the patient's attempting to get out of bed, when he or she is significantly weaker, increasing the risk of falling or harming caregivers. Haloperidol (Haldol) is an antipsychotic that is beneficial for restlessness or confusion. It can be administered orally, rectally, intravenously, or subcutaneously. It is reasonable to start with 0.5 or 1 mg every hour as needed for breakthrough restlessness and monitor over an initial 24 hours. If the patient requires three or more doses in a day, adding the total haloperidol, dividing evenly and scheduling the haloperidol regularly may be beneficial. Chlorpromazine (Thorazine) is an antipsychotic that is more sedating than haloperidol; the patient's family members may desire this sedating effect at a certain point in the patient's disease progression. Escalating the dose of the chlorpromazine may be necessary to treat progressively worsening agitated delirium (Bascom et al., 2013). Chlorpromazine, given subcutaneously, may cause more irritation to the injection site than haloperidol. Atypical antipsychotics may be used when there is a longer prognosis of weeks to months to decrease the side effects of extrapyramidal symptoms and tardive dyskinesia. Quetiapine (Seroquel) is favored over other atypical antipsychotics for patients with Parkinson disease or parkinsonian features because it improves delirium without worsening motor function (Friedman, 2011). When symptoms of anxiety and restlessness are both present, benzodiazepines are effective in treating these symptoms, as listed in the previous section on anxiety.

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

Delivering "Bad News" When giving "bad news" to a patient, do so privately and without interruption (see eTable 5-1). Use language the patient can understand, allow the patient to be emotional, offer to help break the news to the patient's family and employer, and be sure that care providers know what the patient has been told (Field and Cassel, 1997). Health care professionals caring for patients at the end of life should assess the patient's readiness to engage in the discussion and appreciate their level of understanding about the situation and how much they want to know. When physicians know the patient's preferences, they can tailor the discussion appropriately, checking periodically for the patient's level of comprehension and desire for more information. It is best to provide small amounts of information at a time, frequently assessing the patient's desire to continue. Also, besides comprehension, what are the patient's expectations? When sharing information regarding a fatal diagnosis with a patient, eye contact, touch, and personal closeness are important. If possible, sit with the patient and hold his or her hand or touch the forearm. Such gestures convey a sense of support, closeness, and compassion, reinforcing

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

During the terminal stages of a fatal illness, it is vital to the dying patient that the family physician maintain a warm and caring relationship and, through the strength of the doctor-patient bond, provide support for the patient. A physician who is uncomfortable discussing impending death can discourage conversation in many subtle ways. Hospital rounds are made rapidly, perhaps in a superficial, lighthearted manner, never pausing long enough to give the patient an opportunity to express fears and concerns. Comments such as "everything will be all right" effectivel

manufactures the device can assist with discontinuing the ICD. Also, placing a magnet the size of the ICD on the chest over the device can deactivate the ICD temporarily while the magnet is in place. ICD deactivation should be explicitly addressed in advanced care planning and at the end of life (Hastings, 2013, p. 167). EUTHANASIA AND ASSISTED SUICIDE

EUTHANASIA AND ASSISTED SUICIDE Virtually all dying patients think about suicide, and many ask their physicians to help them. The greatest difficulties in the care of the dying sometimes are seen in patients who linger much longer than expected—so-called postmature deaths. How should a caring physician respond to such situations? In any area where medicine intersects with moral codes, there are diverse opinions and heated debate. The distinctions between euthanasia, assisted suicide, and withdrawing unwanted life-prolonging treatments should be kept in mind. Euthanasia involves the purposeful administration of drugs to end life; it is common practice in Holland but unlawful in the United States. Withdrawing or withholding drugs or other treatments that the patient (or surrogate) no longer wants and permitting the disease to run its course are ethical and legal in all states. Assisted suicide involves the prescribing of large quantities of drugs for the purpose of empowering patients to take their own lives, which is now legal in certain circumstances in some states

Nonpharmacologic Techniques Nonpharmacologic pain management techniques include transcutaneous electrical nerve stimulation (TENS), exercise, heat, cold, acupuncture, cognitive therapies (relaxation, imagery, hypnosis, biofeedback), behavioral therapy,

Guidelines for Dosing Data for Opioid Analgesics (see Table 5-5) 1 Evaluate pain for all patients using a 0-10 scale: A. Mild pain: 1-3 B. Moderate pain: 4-7 C. Severe pain: 8-10 2 For chronic moderate or severe pain, do the following: A. Give baseline medication around the clock. B. Order 10% of the total daily dose for PRN administration given every 1 to 2 hours for the PO route or every 30 to 60 minutes for the SC or IV route. C. For continuous infusion, PRN administration can be the hourly rate every 15 minutes or 10% of the total daily dose every 30 to 60 minutes. D. Adjust the baseline upward daily in an amount roughly equivalent to the total amount used for PRN. E. Negotiate with the patient the target level of relief, usually achieving a level at least <4. 3 In general, the PO route is preferable, then the transcutaneous, SC, and IV routes. 4 When converting from one opioid to another, some experts recommend reducing the equianalgesic dose by one third to half and then titrating as in guideline 2. 5 Elderly patients or those with severe renal or liver disease should start on half of the usual initial dose. 6 If parenteral medication is needed for mild to moderate pain, use half of the usual starting dose of morphine or an equivalent. 7 Refer to the Physicians' Desk Reference for additional fentanyl guidelines. 8 Naloxone (Narcan) should be used only in emergencies: Dilute 0.4 mg of naloxone with 9 mL of normal saline; give 0.1 mg (2.5 mL) by slow IVP until effect; and monitor patient every 15 minutes. It may be necessary to repeat naloxone again in 30 to 60 minutes. 9 Short-acting preparations should be used in the initial period and postoperatively. Switch to long-acting preparations when the pain is chronic and after the total daily dose is determined.

all day. If the patient develops worsening respiratory secretions, increasing abdominal girth, or worsening extremity edema, it would be necessary to decrease or stop the parenteral fluids because it demonstrates that the patient's body is not able to process the fluid. As with persistent pain, persistent nausea should be treated with regularly scheduled antiemetics. Combinations of antiemetics that have different modes of action may be needed. A combination of haloperidol with metoclopramide or dexamethasone may be effective. When oral antiemetics cannot be tolerated, rectal suppositories can be tried but rarely provide adequate control for persistent nausea and vomiting unless they are compounded from the potent agents just mentioned. Continuous subcutaneous infusions of metoclopramide, haloperidol, and the required opioid are more effective (Baines, 1988). Discontinuation of metoclopramide is recommended for complete bowel obstruction because this can worsen abdominal pain, nausea, and vomiting (Doyle et al., 2004). Even vomiting associated with complete bowel obstruction can be controlled without a nasogastric tube or gastrostomy with a continuous subcutaneous infusion of opioids, antiemetics, and anticholinergic agents (Baines et al., 1985). Octreotide (Sandostatin) has also been extremely effective.

HICCUPS Persistent hiccups can be caused by any lesion affecting the phrenic nerve and by gastric distention or systemic problems, such as uremia. Oral treatment may include baclofen (Lioresal), 10 mg every 8 hours as needed; chlorpromazine (Thorazine), 25 to 50 mg every 4 to 6 hours as needed; metoclopramide, 10 to 20 mg every 6 to 8 hours as needed; or haloperidol, 1 to 2 mg every 4 to 6 hours as needed. SUBCUTANEOUS ROUTE When oral opioids or antiemetics cannot be tolerated because of nausea, vomiting, stupor, or extreme weakness, parenteral medications may be needed. Frequent intramuscular injections or frequent restarting of intravenous infusions can be painful and difficult to manage at home. In these cases, medications can be administered subcutaneously, either by intermittent bolus or by continuous infusion. At least 50 mL of medication per day can be infused through a small-gauge butterfly needle under the skin of the upper chest, arms, abdomen, or thighs using a portable pump. Morphine and hydromorphone have been shown to be safe and effective when administered by this route (Bruera et al., 1988). Methadone, metoclopramide, haloperidol, lorazepam, dexamethasone, glycopyrrolate, and parenteral fluids can also be administered subcutaneously (Destro et al., 2012).

Patients should be given adequate time to absorb the knowledge of the terminal nature of their illness and the opportunity to react appropriately before death intervenes. This is not possible if the physician procrastinates or rationalizes that it is better not to inform the patient. The process should not be allowed to advance to such a final a stage that inadequate time remains for individuals to react appropriately and put their affairs in order

HOW TO TELL THE PATIENT There is no need to answer questions the patient has not yet asked. One way to approach the subject is to ask patients what they think the problem is or how sick they think they really are. The response may be straightforward ("I think I

an illness that left him seriously debilitated, particularly intellectually. Some patients do not want to be a burden to their families and pride themselves on being able to afford hospitalization or nursing home care. For some of these patients, the gradual withdrawal from family may be an emotional "letting go" that is necessary for all concerned in their particular family and circumstances. In other cases, the spouse simply may not be equipped physically or psychologically to deal with the loved one dying in the house over time. The important aspect is a network of support for all concerned, with no arbitrary judgment about the best approach. The family physician will be sensitive to the style of living and the style of dying that seem most appropriate in a given case after the options have been explained to the patient and family.

Hospice care is intended for patients with a prognosis of 6 months or less. ■ Most patients are referred too late, with a reported median survival time of only 3 weeks. ■ A primary goal of a hospice is to support the patient's wish to die at home. ■ The hospice team gives around-the-clock support to the family, relieves them at times to prevent burnout, and provides follow-up bereavement care for up to 1 year.

procedures have been used. Health professionals often need to believe that everything possible was done for the patient before death. These attitudes have developed because the health care process too often focuses more on professional expectations than patient needs. We might consider what we have done to a patient who dies in the isolation of a laminar flow room without having been able to touch another person's hand during his last few weeks of life. Such treatment is a false-positive, a treatment inappropriate to the real needs of the patient (Saunders, 1976).

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

treatment in the event that they lose decision-making capacity because of a terminal illness. Types of advance directives are as follows: • Living will: A form regarding the limitation of lifesustaining medical treatment in the face of a lifethreatening illness. • Health care surrogate: The appointment of a person to serve as the health care proxy (or medical power of attorney) to make medical decisions for an incapacitated patient. Ideally, these medical decisions would be based on the patient's preferences expressed in earlier discussions with the health care proxy. • Durable power of attorney: Designates a person to make health, financial, and legal decisions if the patient is unable to do so. • "Do not resuscitate" (DNR) order, also known as Allow Natural Death (AND): Determined by the physician and patient or the patient's health care surrogate or power of attorney. • Physician Orders for Life-Sustaining Treatment (POLST): A set of medical orders based on the patient's wishes, as discussed with the patient's physician. This assures that health care professionals provide only the medical treatment that the patient desires to receive. This is currently endorsed with legislative support in 14 states, and it is in development in several other states.

If a person has only one action to take, it should be to appoint a health care surrogate as the person's proxy. Family physicians should encourage every patient to name a substitute decision maker, proxy, or surrogate who can represent the patient's wishes when needed. One problem is that often the surrogates named in the advance directive are not present to make decisions or are too emotionally overwrought to offer guidance. Each state has its own laws governing advance directives, available at www.caringinfo.org. Another site for useful advance directive information is:

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

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

Communication WHEN TO TELL THE PATIENT The issue today is not so much whether to tell patients they have a terminal illness but rather how to share this information with them—because most patients know the nature of their disease process to some degree. Because they know their patients well, family physicians should be able to gauge patients' desire to be told and their capacity to withstand the shock of disclosure. When a terminal state of cancer is inevitable, most patients prefer to discuss such issues with their family physician rather than with their oncologist

Key Points ■ Abandonment is a major fear of dying patients, who spend an average of 10 awake hours alone per day. ■ Listening and allowing patients to express their fears and concerns is of great therapeutic benefit. ■ Touch and sitting with the patient convey support and compassion. ■ Frequent assessment of the patient and family's desire for information must be accompanied by honest answers. ■ Patients should be allowed as much control as possible to avoid fear of the unknown. ■ When cure is not possible, much benefit can be derived from attention to daily symptom control. ■ Avoid giving false hope but remember that hope and humor can be therapeutic.

choosing with comfort and dignity. A study of patients in inpatient palliative care units showed that the quality of dying was associated with adequate symptom management and communication of the expected outcome to the family members (Choi et al., 2013). The keys to symptom control, as in all areas of medicine, are a careful history and physical examination to determine the various causes of discomfort, as well as a broad knowledge of the therapeutic agents available.

Key Points ■ Analgesics should be given regularly and in adequate doses. When titrated appropriately, analgesics do not cause addiction or respiratory depression. ■ Oral morphine is the drug of choice for severe pain. ■ Nonsteroidal antiinflammatory drugs (NSAIDs) are recommended for bone or joint pain, antidepressants or anticonvulsants for neuropathic pain, anticholinergics for cramping abdominal pain or bladder spasms, and antipsychotics for restlessness and confusion. ■ Prevention and treatment of constipation is required for all patients receiving opioids.

caregiver's need 'to do something,' that should prevail" (LORAN Commission, 1989, p. 29). In some situations, therapeutic restraint is necessary to permit a patient to die with dignity. When a cure is no longer possible, care should focus on the comfort of patient and family. At St. Christopher's Hospice in London, feeding is provided by human hands instead of nasogastric or intravenous tubes; "even if the patient does not get enough physical nourishment, he or she gets what is more important—the personal nourishment of someone who cares enough to sit by the bed several hours each day" (Nelson and Rohricht, 1984, p. 174).

Management of Symptoms When fewer therapeutic options are available, the physician's involvement should increase. Even when no cure is possible, much can still be done to relieve pain and suffering. The family physician can help alleviate the fear, symptoms, and family stress that often make this a distressing time, keeping the patient as comfortable as possible and avoiding any impression of abandonment. A good death means being free of pain and unpleasant symptoms yet having the ability to make clear decisions and prepare for death. Care of a dying patient can be one of the most rewarding aspects of the family physician's practice. Too often, however, the physician's discomfort with this stage of life contributes to the isolation and discouragement of the terminally ill patient. Unwarranted fears of respiratory depression, addiction, or tolerance prevent the prescribing of adequate amounts of analgesics. The resulting uncontrolled pain makes those final weeks a nightmare for all. Families may disintegrate as a result of the sleepless nights, fears, and guilt that come from trying to cope with uncontrolled symptoms. Table 5-3 shows symptoms most often encountered in seriously ill hospitalized patients; some are predictable, and all are manageable to some extent. Rarely is a single symptom present, and most patients have two or more. Symptom severity can be decreased if anticipated and treated early. Eliciting and addressing the patient's concerns about anticipated suffering can often be as important as managing the symptoms. Good control of pain, nausea, and dyspnea can enable patients to die in the place of their

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

Many, if not most, patients will choose toxic chemotherapy even if there is only a slight chance of cure or even if it would prolong their life by only a few months. The concern is that they may choose this route on the advice of their physician even though they will be miserable for those remaining months. It is important to have a straightforward discussion with the patient about the quality and quantity of life with and without chemotherapy. More than 20% of Medicare patients with metastatic cancer had a new chemotherapy treatment regimen started in the 2 weeks before death (Earle et al., 2004). Unfortunately, chemotherapy is better compensated than are discussions as to its need and potential side effects. It is no surprise that oncologists prefer third- or fourth-line chemotherapy to discussing hospice care. One patient received intrathecal chemotherapy 6 days before his death at a cost of $3400 (Harrington and Smith, 2008).

Do all patients want to be told of their fatal illness, however? Surveys indicate that 80% to 90% of patients say they wish to be told, but many physicians prefer not to tell a patient that he or she is dying. Ward (1974) found that family physicians are more likely to discuss a fatal diagnosis with women than with men (22% vs. 7.5%) and more often with patients in the upper social class than the lower social class (24% vs. 5% for men; 30% vs. 26% for women). Physicians often wait until the patient is close to death before initiating end-of-life discussions with patients and their families. Patients with cancer often receive a more comprehensive discussion about end-of-life issues than patients with noncancer diagnoses (Abarshi et al., 2011). Promoting earlier discussion about end-of-life decisions helps patients and their families to better prepare for the changes to come. Medical students must be trained more adequately to assist their future patients with how to cope with the dying process. Allowing space to patients and family is beneficial for all participants in the discussion, combined with communication that includes active listening tailored to each patient's needs (Mazzi et al., 2013

Most physicians tell a patient that he or she has terminal cancer if the patient asks a direct question but otherwise evade the issue and discuss it openly only with the family. In many cases, this is the most appropriate course of action; some patients clearly indicate that they cannot and do not wish to face the fact that they have an incurable disease. It is essential, however, that the physician evaluate the true nature of the patient's desire in the matter and neither avoid the issue when the patient wishes to discuss it nor force a discussion on an unwilling individual. "When the task of telling a patient about an onerous diagnosis is too easy, the doctor has become callous. When it is too difficult, he needs to examine his own guilt or anxiety" (Weisman and Brettell, 1978, p. 251)

CONSTIPATION Constipation can be more easily prevented than treated. When mobility and oral intake decrease and opioid analgesics are required, virtually every patient will require regular doses of laxatives to avoid distressing constipation. The laxative should be given once or twice every day and the amount increased to get a soft bowel movement every 1 to 2 days. Bulk laxatives are tolerated poorly and rarely are adequate for these patients. If docusate (Colace), 100 to 200 mg twice daily, is not effective, senna (Senokot), 1 to 4 tablets twice daily, should be added. Sorbitol 70% may be added in doses of 15 to 45 mL two or three times per day if the tablets are inadequate or if dysphagia causes aspiration risk when taking tablets. If a patient has gone several days without a bowel movement or is having small, frequent, liquid stools, an impaction may require manual removal. Bisacodyl (Dulcolax) 10-mg suppositories or sodium phosphate (Fleet) enemas may be needed occasionally until an effective oral regimen is found. Impaction may cause delirium, which can mimic pain. In these patients, the delirium may be improved with a simple enema.

NAUSEA AND VOMITING In patients with nausea and vomiting, the physician should first look for a reversible cause such as constipation or gastritis from NSAIDs. If increased intracranial pressure is the cause, the patient may require steroids. Overfeeding may be the problem if a nasogastric or gastrostomy tube is in place. Metoclopramide (Reglan) is the agent of choice when an enormous liver limits gastric emptying or slow motility is causing early satiety. Many patients whose nausea and vomiting have not responded to prochlorperazine (Compazine) or promethazine (Phenergan) will be relieved by haloperidol (Haldol), 0.5 to 2 mg orally or subcutaneously every 4 to 8 hours. Effective and expensive preparations (usually unnecessary for hospice patients) that are approved for the treatment of nausea associated with chemotherapy include ondansetron (Zofran), granisetron (Kytril), dolasetron (Anzemet), and palonosetron (Aloxi). Parenteral fluids administered subcutaneously may provide some relief from the nausea. Either D5 1 2 normal saline or normal saline is often effective, given about 1 L/day or 40 cc/hr. It can be administered as a rapid drip, if time is limited, so that the patient does not have to have a cumbersome fluid bag

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

Patient Control We need to provide options to patients so they can actively participate in their care and feel a sense of control. Terminally ill patients have a need to believe that they are still in control of their affairs as much as possible even though they have lost control of their bodies. They should be given the freedom to make choices and assume responsibility over as many aspects of their existence as possible. For many individuals, this is an essential part of living, and its loss may destroy their motivation to live. A terminally ill patient should be helped to focus on and cope with the realities of daily living because these problems remain very real and can serve as a diversion from constant preoccupation with the prospect of death. When patients have understanding and insight into the treatment and believe they still have some control over the decision-making process regarding their lives, they are more likely to cooperate with prescribed treatment regimens. It is often fear of the unknown that makes a patient suspicious and resistant to therapy. Patients also should be given the opportunity to settle their affairs. Studies have shown that 40% of terminally ill patients are most concerned about being a burden to their family and friends and that 40% of the families of cancer patients become impoverished

misfortunes of our neighbors" (p. 8). Medicine long has emphasized the need for physicians to remain objective and deal with problems factually; if a physician is unable to do so effectively, attempts to hide emotion may lead the physician to adopt a facade that appears unsympathetic and insensitive to the patient's needs. A son reported that "with the worsening of my father's condition, the physician stopped being friendly and warm; his visits became rare and brief; his manner became quite detached, almost angry" (Seravalli, 1988, p. 1729

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

Hope is a potent force for patients to deal with their illness and to have a confiding relationship with a physician, spouse, or close friend, which can also help prevent depression. Every physician-patient encounter should leave the dying patient emotionally more able to deal with end-of-life issues. Always promote the patient's sense of hope (Ngo-Metzger et al., 2008). DISCUSSING RELIGIOUS AND SPIRITUAL ISSUES As patients approach the end of life and grapple with their mortality, their spiritual and religious concerns may be awakened or intensified. Although some physicians may be uncomfortable discussing a patient's spiritual and religious concerns, they can listen respectfully without judgment or discussion of religious views. Patients who believe that the physician really understands their concerns no longer feel isolated or alone in their final days (Low et al., 2002). One way to approach this issue is to ask the patient, "Is faith or religion important to you in this illness?" In a study of patients with advanced cancer, 88% reported that religion and spirituality were important factors in adjusting to their illness (Balboni et al., 2007). Although religious coping can offer patients a sense of meaning and comfort when facing a life-threatening illness, it is somewhat surprising that a high level of religiousness is associated with preference for aggressive end-of-life care such as mechanical ventilation. These patients may have a greater trust that God will heal them through the treatment even when near death (Phelps et al., 2009

Prolonging Living or Prolonging Dying? It has been a long time since pneumonia was accepted as "the old man's friend." As one organic system after another slowed to a halt, the aged person was released from nausea, pain, delirium, and the degradation of lingering deterioration by finally developing pneumonia and dying. The family doctor merely showed concern and support; before antibiotics, there was not much to do but stand by and "let nature take its course." With improved medical care, however, a dying process that might have taken only a few days in previous years now may drag out for months (Veatch, 1972). Modern technology allows improved medical care to be taken to unrealistic extremes; one person was kept alive in a vegetative state for more than 37 years (LORAN Commission, 1989). Protraction of the dying process is a modern epidemic. Some physicians seem to forget that their primary responsibility is to relieve suffering, not prolong it. Greater clinical skill often is required to provide daily supportive care than to cure acute illness. Tenderness and caring must be included in the protocols of terminally ill patients so that the ravaged patient is allowed to die peacefully, without tubing and respirators. Patients should be allowed "to experience those waning moments unencumbered by hightech devices that serve only to impede their capacity for human interaction. Here it is the patient's comfort, not the

A man dying of cancer did not tell his family or friends in order to spare them. After his death, some admired his ability to suffer in silence, but many were angry and hurt, believing he did not think they were strong enough to suffer with him. The survivors not only were angry because he did not appear to need them but also were hurt because he did not even say good-bye (New Age Hospice Horizons, 1989). The most remarkable contribution of the hospice movement is not that it provides a special and compassionate setting in which terminally ill persons can die without heroic measures but that the family becomes involved and comfortable in caring for the ill member. With the rapid increase of scientific and technologic competence in the field of medicine, families feel increasingly incompetent about the dying process. The hospice movement has reversed this trend and helps family members work with community support services to provide home care for many of these patients. When symptoms cannot be controlled at home, the hospice inpatient unit can provide medical and nursing expertise in a homelike setting

SELECTING A HOSPICE Most cities now have more than one hospice. Some organizations consist of volunteers with little or no medical expertise. Others have freestanding inpatient units and their own medical staffs. The questions in eTable 5-4 will help in the selection of a hospice. Some patients and their families resist entering hospice for fear that their care will be taken over by a stranger and their personal physician will no longer be involved. That fear should be addressed directly by the family physician (Jemal et al., 2009). Many hospices employ a physician board certified in hospice and palliative medicine who can help with particularly difficult symptom problems. (See www.abhpm.org for a list of certified physicians in each area.)

To qualify for hospice under the Medicare Hospice Benefit, a patient should have a life expectancy of less than 6 months. Again, however, referrals are usually made much too late. A study of five hospice programs in Chicago showed that the median survival time after referral was only 24 days (Stone, 2001). In fact, 7% of patients referred to hospice die within hours of admission. This may be because survival estimates by physicians at admission are accurate only 20% of the time, 63% being optimistic and 17% pessimistic. The longer the physician had cared for the patient, the more optimistic the prediction. In 2011, the median (50th percentile) length of stay in a hospice was only about 19.1 days, and the average length of service was 69.1 days, with 35.8% enrolling in the last week of life (NHPCO, 2013). Family physicians should discuss hospice care when options are still available, not at the end of life.

SUPPORT FOR THE FAMILY Families and close friends of the dying patient also suffer and should be supported. A good policy is for the physician not only to be sensitive to the needs of family members before death but to also follow up with the family after the patient dies with a phone call, letter, or home visit. Hospice care is not focused only on the patient; the unit of care is the patient and family. The physical, psychological, and interpersonal needs of both the patient and the family are addressed. After a patient's death, family members may experience increased morbidity and mortality, emphasizing the need for greater family support from the physician. Unfortunately, most physicians do not routinely contact the family after a patient's death, so this need often goes unrecognized. The "widower effect" is the likelihood that the surviving spouse will die shortly after the death of the partner. However, spouses of partners who received hospice care live

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

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

have cancer"), or the patient may indicate a wish to avoid the issue by saying, "I hope it's nothing serious." The patient's condition can be revealed gradually or in stages, such as telling the patient after surgery that there is a suspicion of cancer but that further information will have to wait for the pathology report. The physician should observe the patient's response to this initial suspicion and, based on that reaction, choose a method for presenting subsequent information. Tumulty (1973) supported the concept of gradualism in informing a patient and the family of the terminal nature of the illness: "The total truth is revealed in small doses as the illness unfolds, affording the family the opportunity to get its feet under itself before another blow falls. ... The patient and the family need to be eased into the truth ... not slugged with it" (pp. 180-181).

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

close lines of communication with an intelligent patient who is fully aware of the seriousness of the situation. When the physician tells a patient, "Don't worry," the patient interprets this as, "Don't bother me." Patients are unlikely to initiate discussions regarding their fears of death or feelings of helplessness under such circumstances and remain silent or avoid these issues unless they think the physician is interested and will listen. The physician easily can squelch such conversation, but a slight indication of willingness to discuss the problems disturbing the patient often results in frank conversations, which relieve much of the patient's anxiety and reveal concerns that can be shared only with the physician

THE "RIGHT TIME" TO DIE Simpson (1976) described the "how dare you die on me" syndrome in which the patient has the "effrontery" to die before medical and nursing staff have used all the treatments in their repertoire. The patient is supposed to die "at the right time"—neither before all potential effective therapies have been tried nor too long after all palliative

encourage conversation if time permits or return later when more time is available. Whenever possible, however, the response should be at that moment because the patient is more likely to communicate freely in a spontaneous situation. Physicians who are uncomfortable in this situation may insulate themselves from the issue during hospital rounds by checking the bedside monitoring equipment or otherwise directing attention away from the patient, effectively ignoring overt as well as subtle clues to the patient's needs.

Talking with patients about their death can be difficult, but end-of-life discussions with patients do not result in greater emotional or psychological stress. On the contrary, worse outcomes are found in those who do not have these conversations. Such discussions result in less aggressive medical care near death and earlier hospice referrals. Wright and colleagues (2008) showed that quality of life deteriorates with a greater number of aggressive end-of-life interventions and improves with longer hospice care. Even if a patient has a short hospice stay of hours to days, the patient may still benefit from a higher quality of life because of better symptom management and spiritual support for both the patient and the family (Waldrop et al., 2009). A key benefit of hospice is bereavement support for the patient's family up to 13 months after the patient has died. When the patient is ready to discuss her or his impending death, the physician and patient are probably past the most difficult stage, and the physician needs merely to listen, accept the patient's feelings, and respond to questions honestly. Most patients raise questions that indicate how much they wish to know, provided the physician gives them the opportunity. The most supportive and facilitative act the physician can provide is to sit and ask the patient, "Do you have any questions?" When asked in a sincere manner, patients who are ready to talk about their death will take advantage of the opportunity, but they may be reluctant under other, more hurried circumstances.

as a result of providing care for a family member (Emanuel et al., 2003). Concentration on financial business and putting the house in order is a pragmatic approach to active participation in the decision-making process. Some patients may have a burning desire to complete a cherished project, reconcile an estranged relationship, or visit particular places before they die. Positive motivation can be maintained by assisting them to focus on and deal with these issues. A sense of control is more possible for the patient if pain is controlled and the patient is made comfortable. Sleep should not be forced with medication because some patients resist going to sleep, fearing they may never awaken, and others frequently have terrifying dreams

The Importance of Hope Hope is one of the essential ingredients of human existence, without which life is dark, cold, and frustrating. It maintains strength and gives substance to courage. In the presence of hope, suffering of all sorts still has some positive qualities. In its absence, suffering is a completely negative experience (Tumulty, 1973). Hope allows patients to face the shortness of their lives constructively. Twycross (1986) defined hope as having "an expectation greater than zero of achieving a desired goal." Hope can also be defined as the patient believing in what is still possible. Anything that contributes to a sense of meaning or purpose in life fosters hope. Thus, belief in God or a higher being provides hope and may give a sense of meaning to suffering for some patients. The physician should not raise false hopes or be overaggressive in treating a terminal illness to help the patient maintain hope. Some patients find it best to plan for a little time and hope for more. A false sense of hope may deflect the patient and family from finding final meaning and value in their remaining lives together. Even patients with advanced cancer can maintain a positive outlook on life. The physician can help direct a patient toward an achievable goal, such as pain relief, support for the family from a hospice service, or making a trip to visit relatives. Even laughter can contribute to hope. One patient said, "I may not have much control over the nearness of death, but I do have the power to joke about it." Also, recalling uplifting moments such as vacations or looking at old photograph albums can support hope. Memories of the past can serve to enrich the present (Herth, 1990). Whereas having one's individuality accepted, honored, and acknowledged fosters hope, devaluation of personhood and a feeling of abandonment and isolation interfere with hope. Hope is also hindered by uncontrollable pain and discomfort. The continuation of pain after attempts to control it have failed contributes to the loss of hope (Herth, 1990). Even when death is near, the patient can hope for a measure of happiness during the amount of time he or she has remaining. The physician can support the patient's hope for a good quality of life in the remaining time, for spiritual healing, and for a final phase of life that has integrity and dignity

"Hospice" originally meant a way station for pilgrims and travelers, where they could be replenished, refreshed, and cared for if needed. The Irish Sisters of Charity viewed death as one stage of a journey. They opened hospices for dying patients in Dublin in 1879 and in London in 1905. These were places where dying people could be cared for when such care could not be managed at home. Cicely Saunders was trained as a nurse and social worker in London in the 1940s. She cared for a dying cancer patient who made a £500 donation to "be a window" in the special home for the dying they both knew was needed. Saunders went to medical school and then worked in St. Joseph's Hospice in London from 1958 to 1965. She discovered the effectiveness of interdisciplinary team support, scheduled doses of oral opioids, and other methods to relieve the symptoms and stresses of her patients and their families. She opened St. Christopher's Hospice in south London in 1967, and the modern hospice movement was born. In 2008, there were almost 5000 hospices in the United States alone.

The hospice concept can benefit patients and families wherever death takes place. A hospice program consists of palliative and supportive services that provide physical, psychological, social, and spiritual care for dying persons and their families. Services are provided by a medically supervised interdisciplinary team of professionals and volunteers and are available both in the home and in an inpatient setting. Home care is provided as necessary: on a part-time, intermittent, regularly scheduled, or around-the-clock on-call basis. The hospice concept is directed toward

Most physicians are uncomfortable managing the suffering of a dying patient. It has been proposed that the physician's wish to be released from such a painful clinical relationship may be a factor influencing the patient's suicidal decision. A patient's suicide can have a profound effect on the physician, especially younger physicians. "By some measures, the distress equals in intensity, if not duration, that caused by the death of a parent. Patients' suicides engender anger, guilt, and loss of self-esteem on the part of treating physicians" (Miles, 1994, p. 1787). The emotional strain on some Dutch physicians who had assisted suicide left them "disinclined to repeat the act" (Diekstra, 1993). The principal reason that most patients requested assisted suicide in Oregon was not uncontrolled pain but rather the loss of control or intolerable debilitation. However, much can be done to relieve patients' fears, and support systems can be devised to provide the necessary care for an incapacitated patient. The physician can almost always find an effective pain-control regimen that does not hasten death. One experience of being thanked for not agreeing to assist in suicide by a patient whose previously intolerable pain is now well controlled makes any physician hesitate about participating in assisted suicide. Permanent solutions to temporary problems should be avoided. However, a few patients will have symptoms that are difficult to control in their final days, and physicians should explore "options of last resort," such as palliative sedation, with their hospice and hospital ethics committees.

The idea that any treatable complication of a terminal illness must be treated because it can be treated is also wrong. Most patients do not want to die, but they are just as concerned about the quality of their time remaining as they are about the quantity. The physician may rescue a patient with advanced cancer from one potentially lethal complication, only to find that another, which may cause much worse suffering, will end the person's life. Hippocrates' admonition primum non nocere ("first, do not harm") also may apply to treatments that under other circumstances might be helpful. Well-informed and competent adults have the right to refuse medical treatment even if refusal is likely to result in

providing compassionate care for people facing life-limiting illnesses or injuries. Hospice and palliative care involve a team-oriented approach to expert medical care, pain management, and emotional and spiritual support expressly tailored to the patient's needs and wishes. Support is provided to the patient's loved ones as well. At the center of hospice and palliative care is the belief that everyone has the right to die pain free and with dignity and that patients' families will receive the necessary support to allow them to do so (www.nhpco.org, 2009).

The principal requirement for hospice admission is a lifelimiting illness with a prognosis of 6 months or less, if the disease runs its normal course, as certified by the patient's physician and the hospice physician. eTable 5-3 lists the standards of a hospice program as developed by the National Hospice and Palliative Care Organization (NHPCO). The interdisciplinary hospice team consists of a patient care coordinator, a nurse, a physician, a counselor, a volunteer coordinator, and spiritual support. Medical services are on call 24 hours a day, 7 days a week. Continuity of care by the same group of team members provides a familiarity that is comforting to the patient. Volunteers are an integral part of the program and provide many helpful services. Hospice services are covered by Medicare, Medicaid, and most insurance companies to some extent. Some hospices are able to provide charity care

law to refuse or accept treatment and to complete advance directives. Almost 90% of Americans say that they would not want extraordinary steps taken to prolong their lives if they were dying, but only 20% have put that wish in writing in the form of a "living will." The version of the living will shown in Figure 5-1 has several advantages over others. It clarifies the person's preferences, and instead of locking elements arbitrarily in place, it leaves two witnesses as guardians of the individual's wishes and intentions, with discretion to use their judgment in the specific circumstances. This statement presumes goodwill on all sides and should be helpful to all concerned.

There is no one-size-fits-all approach to advance care planning. Some people prefer a simple approach, and others choose a more comprehensive, step-by-step process. The simple approach prevents support measures from being undertaken that should never have been initiated. It is best to have a patient both complete a living will and designate a health care surrogate to ensure that the person receives the desired medical care. Although advance directives

Although advance directives are not guarantees that the patient's wishes will be followed, without them, these wishes probably will not be followed. Since the case of Terri Schiavo, a 41-year-old woman whose feeding tube was removed in 2005 after a legal battle and political storm, patients are much more aware of the need to declare their feelings about life-sustaining treatment. The Schiavo case illustrates the importance of advance care planning to save both families and physicians considerable anguish.

Unfortunately, the legal restrictions arising out of the Schiavo case may be counterproductive. Courts in several states have now ruled that life-sustaining interventions must be continued in the absence of clear and convincing evidence that the patient would not want them. Despite efforts to make advance directives address a greater variety of terminal situations, it is almost impossible to state accurately the patient's wishes in every scenario. Advance directives are poorly equipped to cope with the complex clinical situations that often arise, emphasizing the need to appoint a health care surrogate.

A physician who can deal with death honestly is able to focus more attention on the patient and can determine the patient's level of awareness by listening and observing nonverbal cues. Clues to the patient's wish to discuss the condition may simply be a deep sigh, a tear, or a shaky voice. The physician must be alert during busy hospital rounds for these or similar signs. The physician can pause to sit and

Useful Questions in Determining a Terminally Ill Patient's Needs and Wishes What do you fear most? What would you like to accomplish in the time left? What is your highest priority? How can I help you achieve this? What has been most difficult about this illness for you? How is your family (e.g., wife, husband, child) dealing with your illness? Is religion important to you?

There is no evidence that forced feeding of cancer or dementia patients prolongs life. Careful metabolic studies on force-fed cancer patients at the National Institutes of Health showed irreversibly increased metabolic rates from forced feeding. It was speculated that tumor growth was accelerated (Terepka and Waterhouse, 1956). Animal experiments have shown that growth rates of a variety of different cancers are nutrient dependent; the growth rate slows down with fasting or protein-free diets and speeds up with total parenteral nutrition (TPN) (Buzby et al., 1980; Stragand et al., 1979). In several trials, patients who received TPN plus chemotherapy were compared with those receiving chemotherapy alone. The TPN group died faster, especially patients with lung adenocarcinoma (Jordan et al., 1981), colorectal cancer (Nixon et al., 1981), and small-cell lung cancer (Shike et al., 1984). Pooling data on TPN and cancer through 1985, Klein and associates (1986) found that infections were more common in patients receiving TPN and that these patients were less responsive to chemotherapy and had shortened survival times. After reviewing all the clinical trials of parenteral nutrition in patients receiving cancer chemotherapy, the American College of Physicians (1989) concluded, "The evidence suggests that parenteral nutritional support was associated with net harm, and no conditions could be defined in which such treatment appeared to be of benefit. Thus, the routine use of parenteral nutrition for patients undergoing chemotherapy should be strongly discouraged."

What should be done to relieve the anorexia of patients with advanced cancer? eTable 5-2 lists a number of treatable causes of anorexia. Uncontrolled pain blunts any person's appetite and can be alleviated. Low-level nausea, oral candidiasis, and constipation can interfere with eating and can be treated effectively. Families can be taught to relieve xerostomia (dry mouth) using a small syringe filled with water or juice and to prepare soft foods. Corticosteroids and megestrol have been beneficial to some but can cause side effects. The most important service the family physician can provide is to allay guilt. An appropriate statement would be: "I do not believe that how much time your husband has or how comfortable he is depends on how much he eats." Family members can be counseled about offering pleasure feedings, not for nutrition but to bring back the pleasant memories of food that was enjoyable. Offering small amounts, about a handful at a time, can keep the portions from being overwhelming. Allowing the patient to take as much or as little as desired is best.

The Physician's Attitude Fewer than 10% of people die suddenly; more than 90% experience a protracted, life-threatening illness (Emanuel et al., 2003). Terminal illness is more taxing on the physician than sudden and unexpected death. Not surprisingly, an empathic family physician with a long patient relationship may be uncomfortable in dealing with the patient's impending death. Physicians are most uncomfortable when they feel helpless. Unfortunately, this leads to withdrawal from the patient who is terminally ill because the physician inappropriately feels helpless and impotent, when in fact a great deal of comfort and help can be provided. "Even the busiest doctor owes [the patient] courtesy and compassion" (Lieberman, 2013, p. 136).

While expressing concern and compassion for a terminal patient, the family physician still must maintain composure and objectivity to remain effective. Osler (1904) referred to this as "calm equanimity" and added, "Our equanimity is chiefly exercised in enabling us to bear with composure the

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

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

Where to Die Death with dignity is easiest to accomplish when the patient dies amid the surroundings that gave meaning to his or her life and in the company of those whose companionship provided most of the rewards of living. Physicians too often deny this, however, in the medically conditioned struggle to prolong life. Medical technology has advanced to the point that too few patients are permitted to die at home even though improved diagnostic techniques identify the irreversible nature of a terminal process at an earlier stage. A sorry commentary, reflecting the abuse of technology, is the case of a man who had built his house with his own hands and wanted to die there but was prevented from doing so while physicians exhausted their therapeutic armamentarium in an attempt to prolong his life a few days or weeks. The family physician must remain in charge as the patient's advocate when the consultants want to continue aggressive therapy yet all the patient wants to do is be comfortable. The family physician must have the courage to discontinue

aggressive therapy when the evidence points to its futility. Charles Lindbergh is an excellent example of an individual who insisted on designing his final days in a manner that would preserve dignity and allow him to die as comfortably as possible. When dying of lymphoma, he refused to remain in a medical center on the East Coast and returned to his home in Hawaii, where he made final arrangements regarding his estate and discussed with friends and family the details of his memorial service and burial site. His death was as he preferred—quiet, dignified, private, and in the company of family and friends—a striking contrast to what it would have been had he not insisted on leaving the medical center. Although 70% of Americans still die in institutions (39% in hospitals and 31% in nursing homes), polls show that 80% of them say they would rather die at home (Farber et al., 2002). Jacqueline Onassis is an example of a prominent person whose wish to die at home was respected. Similarly, Richard Nixon's wishes were respected when his physicians and family knew that he wanted no extraordinary means taken to keep him alive if he developed

Nutrition Although uncontrolled pain is the principal complaint of many patients, the family's primary concern is often the patient not eating well. The causes of cancer cachexia are still poorly understood. Because patients seem to stop eating, lose weight, and eventually die, the natural

assumption has been that even if physicians cannot effectively treat the cancer, they can at least treat malnutrition and thereby delay death. The problem is that more harm than good can come from tube feedings or pushing multiple cans of supplement each day. The family may feel responsible if the patient loses weight and may feel guilty when the person dies. Unfortunately, the patient's final weeks become a struggle with the family over how much the person has eaten. One patient said, "Tell her to stop pushing that spoon into my face; I don't want any more!" This can be carried to extremes, such as inserting nasogastric tubes in patients who "do not cooperate." If they tug on the tube, their hands may be tied to the bed rails. A study of tube feedings in elderly patients revealed that within 2 weeks, 67% of patients with nasogastric tubes had attempted self-extubation, and 43% had aspiration pneumonia. Gastric or jejunal tubes had a lower self-extubation rate (44%), but 56% of the patients had aspiration pneumonia, 31% had a leak or infection at the insertion site, and 50% had a clogged or kinked tube (Ciocon et al., 1988). Another comprehensive analysis found evidence of many risks and no benefits from tube feeding in patients with advanced dementia (Finucane et al., 1999). Large volumes of supplemental feeding can cause painful gastric distention, nausea, diarrhea, and copious pulmonary secretions. Routinely checking residuals of gastric content before each tube feeding is beneficial. This can be done by gently pulling back on the syringe attached to the tube used for feeding to measure any fluid left in the stomach. If residuals are more than approximately 60 cc, then the patient may not be processing the tube feeding, so that the patient or family can see why decreasing or stopping the tube feeding would be in the patient's best interest.

Denial Most patients tend to deny the reality of their situation after being made aware of the terminal nature of their illness. Denial is one way of coping with or protecting oneself against overwhelming anxiety, which otherwise could be incapacitating. This reaction is more marked in a patient who is told abruptly without adequate preparation. Although denial is noted primarily when the patient first learns of impending death, it can appear in different degrees

at different times. Even patients who have accepted the terminal nature of their illness will need to use denial periodically to avoid feelings of hopelessness. The mental burden of impending death is too heavy to carry all the time, and periodic relief is necessary to carry on customary activities and enjoy the limited time left. As Aring (1971) noted, La Rochefoucauld said, "Neither the sun nor death can be looked at steadily."

DYSPNEA As with pain, dyspnea can have many causes. When anemia, bronchospasm, and heart failure have been excluded or treated, the focus should be on symptom control. Oxygen has been shown to be helpful for controlling dyspnea in patients with hypoxia but may be less convenient and more expensive than opioids. When the dose of opioid is titrated carefully to control the pain and is administered on a regular schedule, with additional doses available for breakthrough dyspnea, the patient can obtain excellent relief without significant respiratory depression (Bruera et al., 1990). Evidence from 13 studies shows a valuable effect of morphine for dyspnea in advanced lung disease and terminal cancer. However, using nebulized versus oral opioids showed no additional benefit. Good-quality evidence shows that long-acting β-agonists are beneficial in the treatment of

dyspnea in patients with chronic obstructive pulmonary disease (Qaseem et al., 2008). Albuterol nebulizer treatments every 4 hours while the patient is awake may help relax the bronchospasms that often result in dyspnea and loosen the secretions that become more cumbersome as the respiratory muscles become weaker. It may also be helpful to provide cool, moving air (open window, fan) and keep an unobstructed line of sight between the patient and the outside. Careful consideration should be given to the use of antibiotics for pneumonia in terminally ill patients. Because dyspnea can be controlled well without antibiotics, the physician must decide whether the antibiotics will improve the quality of life or just prolong the dying.

Principles of Hospice Care 1. Hospice offers palliative care to all terminally ill people and their families, regardless of age, gender, nationality, race, creed, sexual orientation, disability, diagnosis, availability of a primary caregiver, or ability to pay. 2. The unit of care in hospice is the patient and family. 3. A highly qualified, specially trained team of hospice professionals and volunteers works to meet the physiological, psychological, social, spiritual, and economic needs of patients and families facing terminal illness and bereavement. 4. The hospice interdisciplinary team collaborates continuously with the patient's attending physician to develop and maintain a patient-directed, individualized plan of care. 5. Hospice offers a safe, coordinated program of palliative and supportive care in a variety of appropriate settings from the time of admission through bereavement, with the focus on keeping terminally ill patients in their own homes as long as possible. 6. Hospice care is available 24 hours a day, 7 days a week, and services continue without interruption if the patient care setting changes. 7. Hospice is accountable for the appropriate allocation and utilization of its resources to provide optimal care consistent with patient and family needs. 8. Hospice maintains a comprehensive and accurate record of services provided in all care settings for each patient and family. 9. Hospice has an organized governing body that has complete and ultimate responsibility for the organization. 10. The hospice governing body entrusts the hospice administrator with overall management responsibility for operating the hospice, including planning, organizing, staffing, and evaluating the organization and its services. 11. Hospice is committed to continuous assessment and improvement of the quality and efficiency of its service

longer than those whose spouses died without the benefit of hospice care, probably because hospice patients impose less stress on the family (Christakis and Iwashyna, 2003). The hospice team provides follow-up bereavement care to the family up to 1 year after the patient's death. Family members who experience grief after the death of a loved one are more vulnerable to physical and other emotional disturbances than at any other time in their lives. They need help dealing with the grief, guilt, and symptoms associated with this emotional turmoil. The bereavement services of a hospice team can minimize these problems and can help family members cope with the pain of memories that arise from time to time, especially at holidays, birthdays, and other stressful occasions

In the past, end-of-life decisions were usually limited to deciding whether or not to use cardiopulmonary

resuscitation (CPR). Now the range includes feeding tubes, hydration, hospitalization, antibiotic use, and terminal sedation. The more the family can focus on what the patient would want instead of what makes the family members feel most comfortable, the better will be the final decision (Lang and Quill, 2004). CPR can be lifesaving in some cases, but in most terminally ill patients, it is extremely unlikely to result in return of satisfactory cardiopulmonary function, survival to discharge from the hospital, or ability to live outside an institution. In a large multi-institutional study, physicians did no better than chance in identifying their seriously ill hospitalized patients' wishes to forgo CPR, and such wishes, even when known, rarely were respected when the physician believed that another course was more appropriate (Connors et al., 1995).

Patients usually will indicate their desire to discuss their prognosis, as well as when they want to avoid the subject and focus on other topics. Even patients who fully accept their terminal process cannot remain constantly focused on that subject and must attend to more satisfying issues. Physicians should honor and respond to this need, just as they would respond to a desire to discuss pain or other problems. What physicians say to dying patients is not nearly as important as their willingness to listen. One of the most comforting steps physicians can take in caring for the dying is to allow them to talk about their fears, frustrations, hopes

needs, and desires. Talking about problems can be very therapeutic. Patients who are permitted to examine and discuss their feelings about death and dying are grateful for the opportunity and usually become less anxious, experience less pain, and accept their situation more easily. If they are denied this opportunity, especially when the terminal process is obvious, they may be convinced that the time remaining is too terrible to be discussed, and their anxiety will be significantly increased. Often, terminally ill patients are more fearful of the manner in which death will occur (e.g., painful, alone and abandoned, weak and helpless) than they are of death itself.

psychotherapy, music therapy, and massage. Cold works especially well for neuropathic pain; heat works well for muscle spasm. Opioids A symptom-oriented history and careful examination may reveal a number of different sources of pain. Oral candidiasis, decubitus ulcers, constipation, and infected wounds all have specific remedies. Most patients with pain from cancer (and many with pain from non-neoplastic illnesses) require an opioid analgesic. Opioids are often the safest analgesics available, usually causing only temporary sedation and an increased need for laxatives. Opioid toxicity may manifest as myoclonus or nightmares; the patient may exhibit spontaneous jerking or pull the hand away when touched, which can be misinterpreted by others, making them reluctant to touch the patient. Morphine taken orally gives good relief for cancer pain but has some unwanted side effects, mainly constipation and nausea. High doses of opioids may be necessary to obtain initial pain control in a patient with severe pain. Psychological dependence is rarely a problem in patients who receive appropriate opioid doses for chronic, severe cancer pain. When medication is given before the recurrence of pain, craving for medication does not occur. Physical dependence does occur with routine use, but withdrawal symptoms can be avoided by reducing a dose no more than 20% in any 2-day period. In the past, physicians feared scrutiny by the U.S. Drug Enforcement Administration for using high doses of morphine to control pain. However, failure to use adequate doses of morphine may be a greater concern now because a physician was successfully sued for undertreatment of pain in a terminally ill patient. The proper combination of

pain medications can relieve pain without clouding the mind or suppressing the spirit. Concerns about addiction, respiratory depression, and tolerance usually are unwarranted in patients with severe pain (Twycross, 1993). If the dose is titrated carefully, the patient's pain (or dyspnea) usually can be controlled completely. Patients can still be alert and mentally clear even when they receive hundreds of milligrams of oral morphine every 4 hours (Bruera et al., 1990). A number of effective oral opioid preparations are available (Tables 5-4 and 5-5). Start with oral morphine solution 2 mg every hour as needed for pain. If four or more doses are given in 24 hours, divide the total milligrams into every-4-hour doses the following day. Use breakthrough doses every hour as needed between scheduled doses. Do the same for each subsequent day. Titrate the morphine dose upward until analgesia lasts the full 4 hours even if large doses are required. Hydromorphone is a good alternative. The particular drug used is less important than the method of administration. To prevent pain and end the cycle of uncontrolled pain followed by oversedation, an oral narcotic should be administered on a regular schedule around the clock. "Breakthrough" doses equal to about half the regular 4-hour dose can be used as needed for breakthrough pain. Long-acting drugs such as methadone (half-life 48 to 72 hours) can be prescribed every 8 to 12 hours but are often unsuitable for booster doses. They accumulate over several days and are difficult to titrate, especially in patients who have fluctuating levels of pain or deteriorating renal or hepatic function. Methadone is a synthetic that has no cross-allergenicity with morphine. It is available in oral and injectable forms and has been successfully used via other

table 63-65

routes. It is metabolized in the liver and has no active metabolites, making it especially useful in patients with renal insufficiency (Toombs and Kral, 2005). The cost of methadone, especially in the parenteral form, has recently skyrocketed, making it cost prohibitive in many settings. The availability of parenteral methadone is limited. Slow-release morphine preparations such as MS Contin and Oramorph SR can provide excellent analgesia for 8 to 12 hours, and Kadian and Avinza last 12 to 24 hours. The shorter-acting, slow-release tablets may be given rectally when the patient cannot swallow (Wilkinson et al., 1992). Small, soluble tablets or concentrated solutions of morphine or hydromorphone can be given sublingually when the patient is too weak to swallow and can be used for both 4-hour and booster doses. Fentanyl, a synthetic opioid, is available for use as a transdermal patch (Duragesic) in 12.5-, 25-, 50-, 75-, and 100-μg/hr strengths or a transmucosal lozenge on a stick (Actiq) in 200- to 1600-μg strengths. Because these products are expensive and deliver a wide variation of plasma levels (25-μg patch = 4 to 11 mg of oral morphine every 4 hours), they should be reserved for patients who cannot receive drugs by the oral or subcutaneous routes. However, the patches may not work in thin, malnourished elderly patients because they need a subcutaneous fat reservoir to work. There is no need to use injections when an adequate dose by mouth will work effectively. Two opioid agents that are available orally are not recommended for cancer pain. Meperidine (Demerol) has a very low oral potency, a short duration of action, and a toxic metabolite that can cause tremors or even seizures (Kaiko

et al., 1983). Pentazocine (Talwin, Talacen) is an agonist- antagonist agent that is no more potent than aspirin with codeine and has a high incidence of psychotomimetic effects (hallucinations, confusion) in cancer patients. Co-analgesics Co-analgesics are drugs that potentiate the analgesic effects of opioids for particular types of pain (Table 5-6). Bone Pain Nonsteroidal antiinflammatory drugs are quite helpful in the alleviation of pain from lesions in bones or skeletal muscles. The nonacetylated salicylates (e.g., salsalate [Disalcid], choline magnesium trisalicylate [Trilisate]) are less toxic to the gastric mucosa and do not inhibit platelet function (Zucker and Rothwell, 1978) but are less potent analgesics. The newer nonsalicylate NSAIDs are more potent, more convenient, more expensive, and less toxic than aspirin. Although no single agent has been shown to be consistently more efficacious, particular patients do seem to favor one drug over another. If swallowing large tablets becomes a problem, piroxicam (Feldene) capsules, naproxen (Naprosyn) suspension, or indomethacin (Indocin) rectal suppositories may be used. The cyclooxygenase-2 (COX-2) inhibitor celecoxib (Celebrex) offers comparable analgesia and less gastrointestinal toxicity but at a higher risk of stroke or heart attack (which may not be an issue in the final weeks of life) and a higher cost. Steroids may also be a helpful adjuvant for bone pain. The steroid side effect of insomnia or vivid dreams may arise. Administering the doses of steroids earlier in the day

such as dexamethasone 4 mg at 8 AM and 2 PM daily, can prevent negative side effects. Neuropathic Pain For the burning, stabbing, or shooting pain caused by nerve damage, an anticonvulsant such as gabapentin (Neurontin), 100 to 400 mg orally one to four times a day, or pregabalin (Lyrica), 50 to 100 mg orally three times a day, may be a useful addition (Rosenberg et al., 1997). Amitriptyline or nortriptyline, in doses smaller than those used to treat depression (10-50 mg at bedtime), are often effective, but newer agents such as venlafaxine (Effexor) or duloxetine (Cymbalta) may be effective for neuropathic pain and have fewer side effects. If swallowing problems arise and a tricyclic drug is needed, doxepin (Sinequan) solution may be used. The addition of carbamazepine (200 mg three times daily) or valproate (Depakene, 250 mg three times daily) should be considered if the tricyclic agent alone is not adequate. Both doxepin and carbamazepine can be administered rectally in gelatin capsules (Storey and Trumble, 1992). Steroids are helpful in treating neuropathic pain.

Care of a terminally ill patient typically focuses on the disease, neglecting the patient as a whole person. The value of treatment must be interpreted on the basis of its net value to the individual. When additional treatments no longer provide benefits, the patient needs someone who provides personalized care with attention to the patient's emotional as well as physical comfort. The dying person often is isolated physically and emotionally from familiar

surroundings and placed in a social setting that gives very low priority to an individual's personality, fears, and past experiences. Informed physicians, family, and friends can do much to help the terminal patient die with integrity and dignity. However, if dying is really to be accepted as a normal component of the life cycle, reintegration of the dying patient into the routine course of living is necessary. The concept of quality care does not always demand that death be regarded as an enemy to be fought with every weapon at a physician's disposal. The technology of today makes it possible to keep people alive indefinitely, often without consideration for their quality of life. An obsession with quantity of life can adversely affect its quality; at times, a graceful death with dignity is preferable to lingering torment (LORAN Commission, 1989). Many people consider quality of life more important than quantity and want to leave while they still have something to say about it. The goal is to "respect the experience of living while supporting the process of dying" (Berlinger et al., 2013, p. 13).

The Patient Self-Determination Act of 1991 requires hospitals and other health care institutions that receive Medicare or Medicaid funds to inform patients of their right to formulate advance directives. The purpose is to encourage greater awareness and use of advance directives so that situations of ambiguity can be avoided (Field and Cassel, 1997). The act requires hospitals to provide written information to all patients concerning their rights under state

table 70

In addition to the extended family, other resources that the family physician can use in the care of the dying patient include the visiting nurse or public health nurse. Most county social service departments have some form of homemaker service. Social workers from both public and private agencies can assist the patient and family in dealing with negative feelings, hostile relationships, economic planning, and financial assistance programs. The social worker is often the key to obtaining tangible assistance such as wheelchairs, walkers, and hospital beds and adapting the home for patients with disabilities. For sensorially deprived patients, talking books, tape cassettes, and other aids are available from local public libraries and the library of the State Commission for the Blind. Chronically and terminally ill children of school age can have teachers for the homebound to keep up with the child's peers, making every day count in as positive a manner as possible. The patient avoids the burden of feeling rejected because of having the stigma of dying. In-home assistance also increases the number of natural interpersonal relationships, avoiding further isolation of a person who already is limited in locomotion and outreach. Some persons have built close relationships through membership in churches or synagogues, service clubs, choirs, prayer groups, athletic teams, professional associations, hobby clubs, and so on. If these friends and associates do not show up, it may be, as Orville Kelly found before he organized Make Today Count, that they are embarrassed and insecure in the face of this impending death of a friend or that they hesitate to intrude. The family physician does not have time to be a social coordinator, but a brief call to a minister, social worker, or family member usually can start the wheels of social interaction moving again. The physician is simply the catalyst. Every religion pays special attention to dying persons. Support comes from the priest, minister, or rabbi, who can help the patient work through basic issues of the meaning of life. The question of "why?" and the confusion of guilt that plagues some patients may be addressed best by a religious counselor. Even if a particular unresolved issue is not related directly to the illness, its resolution provides relief for the patient, whether through confession, sacramental absolution, restitution, or reconciliation with a significant other. This can be as important as medication in the care of the whole person. Bereavement on the part of family members or friends also is eased when issues are "made right." The priest, minister, or rabbi not only serves as a symbol of a community of faith that cares about the sick and dying but also represents a belief system that nurtures hope and trust. The task of the minister (or priest or rabbi) is to sustain and nurture hope through the dying process and to help the dying person surrender the unrealistic forms of hope in favor of more appropriate forms as death draws near (Paterson, 1981).

table 71

Positive Language to Use with Dying Patients I will keep you as comfortable as possible. I will focus on maintaining your quality of life. I want to help you live meaningfully in the time you have left. I will do everything I can to help you maintain your independence. Maintaining your independence and dignity will be my top priority. I will do my best to fulfill your wish to remain at home.

verbal assurance that the patient will not be abandoned during the difficult time remaining. Be positive whenever possible (Table 5-2). Sitting with the patient on the bed or at the bedside rather than standing puts the physician on the same level and conveys in a clear, nonverbal manner a willingness to talk and listen. In one study, physicians visited with hospitalized patients for exactly 3 minutes. Half the visits they sat down, and the other half they remained standing, a little removed from the bed. "Every one of the patients [with whom] the physician had sat down thought the physician had stayed at least 10 minutes. None of the ones [with whom] the physician remained standing estimated that it was as long" (Kübler-Ross, 1975, p. 20).