William L. Lyons MD
Steven Z. Pantilat MD
A century ago, Americans commonly died quickly and at young ages as a result of infections or trauma. With improved sanitation, nutrition, and medical technology, most Americans can now expect to live into their later years, often with multiple and interacting chronic illnesses. Death now comes more often at an old age as a result of 1 or more chronic illnesses (eg, heart disease, cancer, emphysema, dementia) after months or years of declining health. This change has created significant challenges. Physicians caring for chronically ill persons need to be able to provide meaningful prognostication about life expectancy, help patients set priorities for their stage in life, ensure that health care actions are consistent with these priorities, and identify and treat suffering.
The various trajectories of decline and death experienced by older Americans have been described in the literature. Cancer prognosis is relatively clear and is the basis for Medicare's hospice benefit. After being diagnosed with cancer, an individual has a variable period of stable function before a steady decline and death. A second trajectory, typified by heart failure or chronic obstructive pulmonary disease, entails slow, steady decline, with superimposed, unpredictable, dramatic exacerbations, one of which leads to death. The third trajectory involves a slow, steady, inexorable decline over years characterized by functional dependence; elderly persons with dementia or profound frailty usually show this pattern. Caring for patients whose trajectories are like the second or third types can be very challenging because predicting such individuals' life expectancy with accuracy is difficult and orchestrating therapies and health services (eg, assistive devices, family respite care) is often complex.
Blanchard J et al: Quality improvement in end-of-life care. Small-scale innovations can make a dramatic difference. Postgrad Med 2002;111:21. [PMID: 11912995]
ADVANCE CARE PLANNING & ADVANCE DIRECTIVES (see also Chapter 46: Common Legal & Ethical Issues)
The ethical principle of autonomy dictates that capable persons have the right to decide what medical treatments they will undergo. It is very common for geriatric patients and their families to be faced with serious decisions toward the end of life, such as whether to allow attempted resuscitation, artificial nutrition and hydration, or transfers from nursing home to hospital. Often the patient is incapable of participating in the necessary discussions at a moment of crisis. Advance care planning allows patients to project their autonomy into the future. The process invites patients to take time, when they have the capacity, to reflect about serious matters and to sketch out their health-related goals and articulate strong feelings about particular medical treatments. Unfortunately, < 25% of older Americans have executed advance directives, and few such documents offer very specific instructions about desired care.
Advance directives can be categorized as either proxy directives, in which the patient designates an individual to make health-related decisions on his or her behalf in the event of decisional incapacity, or instructional directives, in which the patient specifies in advance what kinds of treatment he or she would want under various circumstances. The most useful advance directives accomplish both goals, identifying a surrogate decision maker and spelling out clear health-related treatment goals and preferences. To make advance directives as useful as possible, clinicians should counsel patients who designate a proxy to talk with this individual about goals and preferences, not simply to provide the clinician with that individual's name. Instructional directives will be of limited use if inadequate effort is expended in their preparation. In particular, instructional directives are of limited utility if they state nothing more specific or inclusive than “avoid heroic measures if my condition is terminal.”
Outpatient clinicians, in the first few visits with any older patient, should ask whether an advance directive has been previously completed. If so, the document should be obtained, reviewed with the patient, photocopied, and placed in the medical record. If not, the clinician should proactively and deliberately start the advance care planning discussion. In caring for older patients with dementing illnesses (assuming some decisional capacity remains), time is of the essence. Clinicians should succinctly summarize in the medical chart the advance planning discussions held with patients. Further, because such advance directives often appear not to be transferred to, or recognized in, the hospital
charts of inpatients, communication about advance directives from the primary provider to other physicians involved in the patient's care in the hospital is crucial. Some clinics use prompts to remind clinicians to review advance directives, analogous to those used for immunizations or cancer screening. Once completed, advance directives should be revisited frequently (eg, yearly) and whenever a significant change in health status occurs. Patients should be instructed to keep copies of advance directives in an accessible location at home and to provide copies to surrogate decision makers.
Although eliciting goals, values, and treatment instructions from patients can be a challenging task, clinicians can improve their skills. Table 44-1 provides suggested open-ended questions that are often fruitful in catalyzing these discussions. The questions place more emphasis on goals and values and less on particular treatment modalities. Given the rapid pace of development in medical technology, it is daunting to attempt to cover every conceivable option that might be considered at some future time in a patient's life. Moreover, asking patients to consider hypothetical burdens and benefits of such treatments is, in many instances, unrealistic. It is often preferable to elicit a patient's general goals and values; when the time comes, the clinician can then work with the surrogate to determine whether the burdens of a particular treatment are justified in an effort to reach those goals.
Table 44-1. Tips for advance care planning.
Kaufman SR: Intensive care, old age, and the problem of death in America. Gerontologist 1998;38:715. [PMID: 9868851]
COMMUNICATION & DECISION MAKING
Ideally, clinicians attend to symptom palliation throughout a patient's life and continuously readjust treatment priorities on the basis of frequent consultation with the patient or other key decision makers. In reality, for a multitude of reasons, curative and life-prolonging care is typically the focus of attention until some clear transition occurs, at which time all parties consider a major shift in goals. Relief of suffering then becomes the major emphasis. Skilled geriatric end-of-life care requires the practitioner to be adept at discussing transitions with patients and families and to be capable of facilitating meetings in which important decisions are made. The following guidelines might serve as a general blueprint for a family meeting.
have come back”). Avoid numerical predictions (patients mentally mark their calendars when told they “have 6 months to live”); it is better to say, for example, “I think we are talking about weeks to months.”
Lo B et al: Discussing palliative care with patients. Ann Intern Med 1999;130:744. [PMID: 10357694]
Quill TE: Perspectives on care at the close of life. Initiating end- of-life discussions with seriously ill patients: addressing the “elephant in the room.” JAMA 2000;284:2502. [PMID: 11074781]
Steinhauser KE et al: Factors considered important at the end of life by patients, family, physicians, and other care providers. JAMA 2000;284:2476. [PMID: 11074777]
Providing meticulous management of symptoms of terminal illness is important not only for humanitarian reasons but to allow the patient to focus attention on essential considerations like saying goodbye at life's end. Some providers worry about being too generous with symptom-relieving medications, fearing that they may expedite a patient's demise. The ethical principle of double effect, however, states that it is acceptable to use a treatment to relieve suffering, even if a known but unintended consequence is that it may hasten a patient's death.
Nociceptive pain is pain arising from nonneural tissue injury. Most pain resulting from metastatic deposits, for example, is nociceptive. Although mild nociceptive pain can be treated satisfactorily with acetaminophen, moderate or severe pain should be treated with opioids. In the unusual instance when pain appears only infrequently and sporadically, a simple as-needed regimen may suffice. More commonly, the patient's pain is present at a constant background level, with episodes of exacerbations that may or may not be predictable. This pattern is best treated using a scheduled (basal) dosage of opioid, with additional drug available as needed for breakthrough pain. The basal opioid chosen should be a long-acting preparation to provide continuous pain control for continuous pain. Patients should also have medications available for breakthrough pain at a dose equivalent to 100% of the basal amount given in the same 24-h period. For example, a patient who is taking 30 mg twice daily (60 mg total/24 h) of long-acting morphine could be offered a breakthrough regimen of short-acting morphine, 10 mg orally every 4 h as needed (60 mg/24 h). Table 44-2 lists commonly used opioids, with estimated conversions from one drug to another and one route to another. It often does not make a large difference which drug is chosen in a particular instance; attention to drug cost and ease of administration may be helpful when making a selection. Of note, morphine metabolites accumulate in patients with poor renal function, and meperidine should be avoided because of its short half-life and the significant risk of delirium and seizures in the elderly.
Opioids can cause several adverse effects: somnolence, delirium, nausea, constipation, urinary retention, pruritus, and even myoclonus when used in high doses.
Although somnolence may resolve at a stable dose after 2–3 days, constipation tends to persist, even when serum drug levels have stabilized. A bowel regimen (eg, senna, starting at 1 tablet at bedtime) should generally be used in managing any patient started on an opioid regimen. Other side effects of opioids may resolve with lowering of the drug dose. If that is not possible, clinicians may try treating the symptom (eg, diphenhydramine 25 mg orally every 6 h for pruritus) or changing to a new opioid.
Table 44-2. Opioid drugs & equivalent potency conversions.
Neuropathic pain is the result of injury to nerves, such as can occur with tumor encasement of a nerve trunk. Opioids typically provide only partial relief of neuropathic pain. Gabapentin (beginning 100 mg orally every night and titrating slowly up to 1200 mg 3 times daily) or desipramine or nortriptyline (either beginning 10 mg orally every night and titrating every 2–3 days slowly to 150 mg every night, if needed) are more likely to provide relief.
Nonsteroidal anti-inflammatory drugs (eg, ibuprofen at 400–600 mg orally 3 times/day) may provide relief of bone pain or pain with an inflammatory component and may also allow reduction of opioid dosing. Patients who have gastrointestinal discomfort with nonsteroidal drugs may derive benefit from simultaneous use of a proton-pump inhibitor. Peritumor edema often contributes to cancer pain (eg, metastatic disease in the liver), and prednisone use (10–20 mg orally daily) can be helpful in this context for patients whose life expectancy would reduce concerns about corticosteroid adverse effects.
In many cases, pain from bony metastases is best treated by judicious use of radiotherapy. Patients who are expected to live more than a few days and for whom transportation to a treatment center is feasible may benefit from consultation with a radiation oncologist.
It is very common for patients with malignancy, end-stage cardiac disease, or end-stage pulmonary disease to experience shortness of breath at end of life. Skillful management of this symptom can substantially reduce suffering. Generally, chronic dyspnea is best treated with opioids, and the principles discussed in connection with pain management apply here as well. Supplemental oxygen may provide relief even for patients whose oxygen saturation levels are not low. Similarly, a bedside fan or open window may be beneficial. Lorazepam (in doses of 0.5–1 mg as needed) may help reduce dyspnea-induced anxiety. Drugs used in management of congestive heart failure (diuretics, digoxin, angiotensin-converting enzyme [ACE] inhibitors) need not necessarily be discontinued when goals of care become purely palliative because such a regimen can provide relief of dyspnea as well.
Nausea & Vomiting
Nausea and vomiting may result from a disease process itself or from medications used to combat the disease or its symptoms. One common cause is constipation (see later discussion), a common problem in terminal, bed-bound, dehydrated patients taking opiates. Opioids themselves may cause nausea by stimulation of receptors in the chemoreceptor trigger zone. Other metabolic derangements and medications can cause nausea by the same mechanism. This cause of nausea can be managed by attempting to design a regimen that minimizes blood stream fluctuations in opiate levels (eg, by increasing the ratio of basal to breakthrough dosing). If unsuccessful, haloperidol (starting 0.5 mg orally 3 times/day) may provide relief of opiate-induced nausea. When the cause of nausea cannot be clearly identified, as commonly occurs, prochlorperazine (5–10 mg orally 3 times/day or 25 mg rectally every 12 h) is often helpful as a first agent. If symptoms persist, it is appropriate to add additional agents. Metoclopramide (10 mg orally 4 times/day 30 min before meals and at bedtime) may be beneficial when upper gastrointestinal tract motility is compromised. Finally, dexamethasone (1- 4 mg orally or subcutaneously every 6 h) often relieves nausea, particularly if it results from extrinsic compression of the gut by tumor.
It is easier to prevent constipation (eg, by instituting a bowel regimen when prescribing opioids) than treat it. Senna (starting at one 8.6-mg tablet at bedtime, with doses ranging up to 3 tablets 2 or 3 times/day if necessary) can be used alone or with sorbitol (30–150 mL of 70% solution) to ensure regularity. Some patients have difficulty titrating sorbitol or are bothered by drug-induced bloating. Bisacodyl suppositories (5–10 mg daily as necessary) can be used to treat constipation if the oral route become unreliable. Docusate is effective as a stool softener but lacks cathartic properties.
Elderly patients nearing the end of life commonly experience acute confusional states (see also Chapter 10: Delirium). The extent to which the underlying cause of the episode needs to be determined depends on life expectancy and the likelihood that a reversible cause can be identified and addressed in time. A patient who appears to be suffering from anxiety-inducing delusions, hallucinations, or perceptual distortions should be provided
reassurance at the least, and consideration should be given to use of a neuroleptic. Haloperidol (starting 0.5 mg orally 3 times/day) may reduce agitation from psychotic symptoms; chlorpromazine (starting 10 mg orally 2 times/day) may also prove effective and may add a potentially useful sedative effect. However, some patients experience greater confusion as a result of this drug's anticholinergic properties. Benzodiazepines tend to worsen delirium and should be avoided.
An elderly person coming to terms with the fact that life is drawing to a close is entitled to “feel blue,” cry, and think of death. Such symptoms may represent preparatory grief, an expected part of the dying process. These grieving patients may benefit from support from loved ones and their health care providers as well as from counseling. Patients whose mood is characterized by hopelessness or decreased self-esteem or who entertain thoughts of suicide are more likely to be suffering from clinical depression. Although sadness is normal in dying patients, depression is not and should be treated. For depressed dying patients with a life expectancy measured in (many) weeks, a trial of an antidepressant (see Chapter 14: Depression & Other Mental Health Issues) may help. Dextroamphetamine or methylphenidate (for each drug, start 2.5 mg orally each morning and noon) may help those with a shorter life expectancy. Those individuals who benefit from psychostimulants typically report an effect within 1–2 days of starting the drug.
The oral cavity is commonly a site of discomfort in dying patients. In the final few days and hours of life, a patient's oral mucosa may become very dry, which can generate pain, difficulty with speaking and swallowing, and halitosis. Meticulous attention to oral care and use of moistened swabs and artificial saliva can improve symptoms related to dryness. Dentures not only assist with chewing but may provide desired aesthetic structural support to the lower face. They require daily cleaning to avoid painful candidal infections.
Emollients maintain skin moisture in dehydrated patients, and their application can be pleasurable. Management of decubitus ulcers in a patient's last few hours or days of life can be controversial; often the most humane approach is to minimize painful wound care and mandatory repositioning and opt instead for chronic analgesic use.
Chochinov HM: Dignity-conserving care a new model for palliative care: helping the patient feel valued. JAMA 2002;287: 2253. [PMID: 11980525]
Gloth FM: Pain management in older adults: prevention and treatment. J Am Geriatr Soc 2001;49:188. [PMID: 11207874]
Luce JM, Luce JA: Perspectives on care at the close of life. Management of dyspnea in patients with far-advanced lung disease: “once I lose it, it's kind of hard to catch it…” JAMA 2001;285:1331. [PMID: 11255389]
NUTRITIONAL QUESTIONS IN END-OF-LIFE CARE
Food has great cultural and symbolic significance so that, when a patient's oral intake declines as a result of a life-threatening disease, many questions arise. Is the patient dying from slow starvation? Does reduced intake of food and fluids lead to suffering? Should some kind of measures be taken (up to and including the provision of artificial nutrition and hydration) to ensure adequate nutrition?
In most cases, patients lose appetite and interest in eating as a natural consequence of dying: their declining to eat is a normal part of dying, not the cause of it. Moreover, data show that such patients do not typically experience significant hunger or thirst. Fasting-induced ketones may even provide some measure of natural euphoria.
Although artificial nutrition and hydration may be appropriate for patients with good functional status who lack the ability to eat because of gastrointestinal tract disruptions or obstructions, it has not been demonstrated to prevent aspiration pneumonia, promote comfort, increase weight, improve functional status, or prolong life. Further, providing hydration to patients nearing death runs the risk of generating wet respiratory secretions or pulmonary edema. It is reasonable to offer a diet the patient prefers and suggest gentle spoon feeding by caregivers. Table 44-3 provides recommendations
for nutritional management in end-of-life care.
Table 44-3. Recommendations for nutrition and hydration in end-of-life care.
PSYCHOLOGICAL, SPIRITUAL, & SOCIAL ISSUES
Dying is less a biomedical event than a psychological, social, and existential one. A person reaching the end of life may question the deepest meaning of identity, the quality of relationships, and even the purpose of existence. Excellent care at the end of life focuses on more than management of physical symptoms.
Kubler-Ross's description of 5 psychological stages experienced by dying individuals (denial, anger, bargaining, depression, and acceptance) captures much emotional truth, but not every patient experiences each stage or traverses such an orderly progression. Beyond these, anxiety and fear of the unknown are commonly voiced emotions. Clinicians can provide emotional support by listening and providing information and reassurance, signaling fidelity and nonabandonment regardless of what may come, and giving reason for hope even if only to feel better tomorrow.
As death approaches, patients may worry about unfinished business in their social or family spheres. A death that is not sudden may be a gift to the patient, allowing for completion of interpersonal relationships. According to hospice leader Ira Byock, a dying person should give voice to 5 statements in order for such relationships to be brought to a healthy close: Forgive me, I forgive you, Thank you, I love you, and Goodbye.
Clinicians can elicit existential or spiritual concerns by asking a few well-phrased and well-timed open-ended questions: “Do you find yourself wondering what is the purpose of all of this? Has spirituality or faith been important to you in the past? Is it now?” A timely referral to a pastor or chaplain can be a great service. Some patients derive spiritual solace by leaving a legacy in the form of shared stories, an audio- or videotape, a scrapbook, or an autobiography.
Hospice care refers to the provision of services to persons with an incurable illness, using an interdisciplinary team to focus on minimizing physical symptoms, providing spiritual and psychological support, and assisting with family bereavement. In the United States, hospice also refers to the Medicare hospice benefit, through which federal funds provide this type of end-of-life care to eligible patients.
There are 2 fundamental eligibility criteria for the Medicare hospice benefit. First, the patient must have a life expectancy, as certified by a physician, < 6 mo, assuming the disease runs its usual course. Second, the patient's goals of care must be palliative, not curative. Although some hospice agencies may require that a do-not-resuscitate order be in effect, this is not a mandatory criterion of Medicare regulations.
It is typically more difficult for a physician to certify a prognosis of < 6 mo for a patient with a noncancer diagnosis. To assist with prognostication, the National Hospice Organization has published a set of useful guidelines.
Two special populations of terminal geriatric patients deserve special consideration: those with terminal dementia and those dying of old age.
Many dementing illnesses, such as Alzheimer's disease, are terminal afflictions. Nevertheless, the terminal stage can last for a prolonged period, a fact that may make hospice agencies unwilling to admit such patients (if dementia is given as the terminal diagnosis). The following characteristics are typical of demented patients with life expectancy of < 6 mo and should prompt a hospice approach: progressive weight loss, decubitus ulcer formation, recurrent pneumonia, recurrent urinary tract infection, inability to ambulate (even with assistance), inability to track objects with the eyes, and a vocabulary < 6 words.
Dying of Old Age
Some debilitated elderly persons with a combination of illnesses and disabilities show such progressive frailty that it is apparent to all that a terminal process is at work, even if no single terminal diagnosis can be applied. Such individuals typically have poor appetite and ongoing weight loss, are substantially (and increasingly) dependent in activities of daily living, and may have repeated hospitalizations and emergency department visits. The International Classification of Diseases (ninth edition) code 799.3, for “debility, unspecified,” has been applied to this population, and hospice agencies will accept this as a terminal diagnosis if adequate supporting evidence is provided. Table 44-4 lists the kinds of information that should be gathered in support of this label.
Table 44-5 summarizes Medicare hospice benefits. Of note, medications are a covered benefit (if used to treat the terminal illness) in contrast to traditional Medicare coverage. Also of interest, although continuous nursing is not available (except for short-term management of a medical crisis), hospice nurses are available by telephone 24 h/day. Hospitalization is discouraged (because it is seldom required to provide purely palliative care) but may be used when medically necessary for acute symptom management.
Table 44-4. Evidence in support of hospice diagnosis “Debility, Unspecified”.a
Lynn J: Perspectives on care at the close of life. Serving patients who may die soon and their families: the role of hospice and other services. JAMA 2001;285:925. [PMID: 1180736]
National Hospice Organization: Hospice Care: A Physician's Guide. National Hospice Organization, 1998. (Frequently referenced guide to rudiments of Hospice care, with useful prognostic guidelines for noncancer diagnoses.)
Culture is particularly important at times of life transition, such as weddings, births, and deaths. In the context of end-of-life care, culture renders human what is otherwise a biological event. Physicians who are knowledgeable about their patients' cultures are better able to provide compassionate palliative care. Culture includes not only ethnicity, but also religion, educational level, socioeconomic status, generational cohort, and geography. American biomedicine, of course, is also a culture, with its own jargon and intrinsic value system.
Table 44-5. Services covered under Medicare hospice benefit.
One consistent element of American bioethical tradition is the emphasis on patient autonomy. This may be an unfamiliar concept to many patients and their loved ones; often, families wish to spare the patient the perceived burden of decision making at times of serious illness. Some families go further and request that the patient not be informed of an ominous diagnosis. One way to satisfy these cultural requests, while still respecting the tradition of autonomy, is for the physician to offer the patient the opportunity to cede discussions of diagnosis, prognosis, and treatment to someone else.
Culturally competent physicians deliberately learn about the cultural traditions of populations they serve. Such knowledge allows providers to probe individual patients about particular beliefs and practices that may affect care at the end of life. Table 44-6 lists areas of potential inquiry.
A clinician should have a low threshold for involving a translator when a patient's primary language differs from that of the clinician. Family translators may not be ideal because they may feel motivated to sanitize bad news or sidestep taboo subjects. When cultural
miscommunication appears likely, it can also be helpful to involve a staff member of the same cultural group as the patient.
Table 44-6. Issues to explore in cross-cultural end-of-life care (sample questions).
Crawley LM et al: Strategies for culturally effective end-of-life care. Ann Intern Med 2002;136:673. [PMID: 11992303]
Kagawa-Singer M, Blackhall LJ: Negotiating cross-cultural issues at the end of life: “you got to go where he lives.” JAMA 2001;286:2993. [PMID: 11743841]
At and after death, the clinician is called on to perform a number of important tasks. The pronouncement of death is the first such task. To confirm the patient's physical death is generally not a significant professional challenge. The ritual aspect of this event, however, in which the physician formally declares to loved ones that a life has reached an end, is rich in meaning. In serving this ancient ministerial role, a physician may wish to assure family that the patient died peacefully and that all appropriate care had been given. This may also be the first opportunity to express sympathy for the loss.
An autopsy may help surviving family members, as well as clinicians, to understand the underlying causes of an elderly person's death and can provide a sense of closure. Autopsy rates have fallen over the last several years. Some families report refusing permission out of fear of disfigurement of the body or delay of the funeral. When families are offered autopsy, they should be informed that they may limit the autopsy (eg, to abdomen only) and that the procedure may be performed without interfering with funeral plans or the appearance of the deceased.
A telephone call or letter from the clinician to the family after a death is usually much appreciated. By following up with the family, the provider can express concern and ask about the grieving process. Crying, difficulty sleeping, and even fleeting thoughts of death are probably normal reactions for the recently bereaved. However, persistent blaming of oneself, decline in self care, or suicidal ideations and plans are indicators of complicated grief or depression, and persons demonstrating such signs need prompt (and, in some instances, emergent) referral to a therapist or psychiatrist.
Prigerson HG, Jacobs SC: Perspectives on care at the close of life. Caring for bereaved patients: “all the doctors just suddenly go.” JAMA 2001;286:1369. [PMID: 11560543]