Patients need reassurance that symptoms will not be overwhelming.
Physical and mental distress is common while living with fatal illness, but much distress can be prevented or relieved. Patients commonly fear protracted and unrelieved suffering. Knowing they can count on living reasonably comfortably enables patients to focus on living as fully as possible and on confronting the issues presented by fragile health and the approach of death.
Symptom control should be based on etiology when possible. For example, vomiting due to hypercalcemia requires different treatment from that due to elevated intracranial pressure. However, diagnosing the cause of a symptom may be inappropriate if testing is burdensome or risky or if specific treatment (eg, major surgery) has already been ruled out. For dying patients, comfort measures, including nonspecific treatment or a short sequential trial of empiric treatments, are often better than an exhaustive diagnostic evaluation.
Because one symptom can have many causes and may respond differently to treatment as the patient's condition deteriorates, the clinical team must monitor and reevaluate the situation frequently. Drug overdosage or underdosage is harmful, and both become more likely as worsening physiology causes changes in drug disposition.
When survival is likely to be brief, symptom severity frequently dictates initial treatment. Sometimes the fear that a symptom will worsen can be more crippling than the symptom itself, and reassurance that effective treatment is available may be all a patient needs. When a symptom is quite severe or the diagnostic alternatives do not affect treatment, the physician should quickly relieve suffering by treating the symptom.
About half of patients dying of cancer have severe pain. Yet, only half of these patients receive reliable pain relief. Many patients dying of organ system failure and dementia also have severe pain. Sometimes pain can be controlled but persists because patients, family members, and physicians have misconceptions about pain and the drugs (especially opioids) that can control it, resulting in significant underdosing.
Patients perceive pain differently, depending partly on whether other factors (eg, fatigue, insomnia, anxiety, depression, nausea) are present. Analgesic choice depends largely on pain intensity and cause, which can be determined only by talking with and observing patients. Patients and physicians must recognize that all pain can be relieved by an appropriately potent drug at sufficient dosage, although aggressive treatment may also cause sedation or confusion. Commonly used drugs are aspirin, acetaminophen, or NSAIDs for mild pain; oxycodone for moderate pain; and hydromorphone, morphine, or fentanyl for severe pain (see Pain: Treatment of Pain).
In dying patients, oral opioid therapy is most convenient and cost-effective. Rectal opioid therapy provides more uneven absorption; however, 1st-pass effect is often minimal. Morphine suppositories or pills may be given rectally at the same dosage used for oral forms and then titrated as needed. IV or sc opioid therapy is better than IM injections, which are painful and result in variable absorption. Long-acting opioids are best for long-lasting pain. When giving opioids, the physician should prescribe them in adequate dosage and on a continuous basis to prevent pain. Unreasonable concerns by the public and by health care practitioners about addiction often tragically limit appropriate use of opioids. Pharmacologic dependence may result from regular use but causes no problems in dying patients except the need to avoid inadvertent withdrawal. Addictive behaviors are rare and usually easy to control.
Adverse effects of opioids include nausea, sedation, confusion, constipation, and respiratory depression. Constipation should be treated prophylactically (see The Dying Patient: Constipation). Patients usually develop substantial tolerance to the respiratory depressant and sedative effects of morphine but have much less tolerance for the analgesic and constipating effects. Opioids may also cause myoclonus, agitated delirium, hyperalgesia, and seizures. These effects may result from accumulation of toxic metabolites and usually resolve when another opioid is substituted. Patients with these adverse effects and serious pain often warrant consultation with a palliative care specialist or pain specialist.
When a stable opioid dose becomes inadequate, increasing the dose by 1½ to 2 times the previous dose is reasonable. Usually, serious respiratory depression does not occur unless the new dose is much more than twice the previously tolerated dose. Clinicians often are unfamiliar and thus uncomfortable with such large dosage increases. Increasing the dose over 1 to 2 h with constant observation and having opioid antagonists immediately available can overcome that reluctance.
Use of adjunctive drugs for pain control often increases comfort and reduces the opioid dosage and consequent adverse effects. Corticosteroids can reduce the pain of inflammation and swelling. Tricyclic antidepressants (eg, nortriptyline, doxepin) help manage neuropathic pain (see Pain: Neuropathic Pain); doxepin can provide bedtime sedation as well. Gabapentin 300 to 1200 mg po tid helps relieve neuropathic pain. Methadone is effective for refractory or neuropathic pain; however, its kinetics vary and it requires close monitoring. Benzodiazepines are useful for patients whose pain is worsened by anxiety.
For severe localized pain, regional nerve blocks given by an anesthesiologist experienced in pain management may provide relief with few adverse effects. Various nerve-blocking techniques may be used. Indwelling epidural or intrathecal catheters can provide continuous infusion of analgesics, often mixed with anesthetic drugs.
Pain-modification techniques (eg, guided mental imagery, hypnosis, acupuncture, relaxation, biofeedback) help some patients (see Complementary and Alternative Medicine: Mind-Body Medicine). Counseling for stress and anxiety may be very helpful, as may spiritual support from a chaplain.
Dyspnea is one of the most feared symptoms and is extremely frightening to dying patients.
Quickly reversible causes should be treated specifically. For example, placing a chest tube for tension pneumothorax or doing thoracentesis for a pleural effusion provides quick and definitive relief. However, if death is imminent or a definitive treatment for the cause of dyspnea is not available, proper symptomatic treatment assures patients they will be comfortable, regardless of the cause.
As a first intervention, O2 helps correct hypoxemia. Even when its oxygenating benefit is no longer certain, O2 may continue to be psychologically comforting to patients and family members. O2 therapy is most comfortable by nasal cannula, so this route is preferred unless higher concentrations are critically important.
Morphine 2 to 10 mg sublingually or 2 to 4 mg sc q 2 to 4 h prn helps reduce breathlessness in an opioid-naive patient. Such a low dosage of morphine may blunt the medullary response to CO2 retention or O2 decline, reducing dyspnea and decreasing anxiety without causing harmful respiratory depression. If patients are already taking opioids for pain, dosages that relieve dyspnea must often be more than double the patient's usual dosages.
Airway congestion is best managed with drugs that dry secretions (eg, topical scopolamine gel 0.25 to 0.5 mg q 8 to 12 h applied to the skin behind the ear or on the chest, hyoscyamine 0.125 mg sublingually q 8 h, diphenhydramine 10 to 50 mg IM q 4 to 6 h prn).
Nebulized saline may help patients with viscous secretions. Nebulized albuterol and oral or injectable corticosteroids may relieve bronchospasm and bronchial inflammation.
Benzodiazepines often help relieve anxiety associated with dyspnea and with the fear of a return of dyspnea. Useful nondrug measures include providing a cool draft from an open window or fan and maintaining a calming presence.
Anorexia and marked weight loss are common among dying patients. For family members, accepting the patient's poor oral intake is often difficult because it means accepting that the patient is dying. Patients should be offered their favorite foods whenever possible. Conditions that may cause poor intake and that can be easily treated—gastritis, constipation, toothache, oral candidiasis, pain, and nausea—should be treated. Some patients benefit from appetite stimulants such as oral corticosteroids (dexamethasone 2 to 8 mg bid or prednisone 10 to 30 mg once/day) or megestrol 160 to 480 mg po once/day. However, if a patient is close to death, family members should understand that neither food nor hydration is necessary to maintain the patient's comfort.
IV fluids, TPN, and tube feedings do not prolong the life of dying patients. All of these measures seem to increase discomfort and may hasten death. Pulmonary congestion and pneumonia are more common among dying patients who are fed artificially. Artificial hydration may worsen edema and pain associated with inflammation. Conversely, dehydration and ketosis due to caloric restriction correlate with analgesic effects and absence of discomfort. The only reported discomfort due to dehydration near death is xerostomia, which is easily relieved with oral swabs or ice chips.
Family members should be gently told that the patient is dying and that food does not help the patient's strength nor substantially delay death; they should be reassured that the patient does not suffer from having little or no intake. Having family members and friends take on specific tasks (eg, providing favorite foods, small portions, and foods that are easy to swallow) provides other ways to show caring and love, which can help family members.
Even debilitated and cachectic patients may live for several weeks with no food and minimal hydration. Family members should understand that stopping fluids does not result in the patient's immediate death and ordinarily does not hasten death. Supportive care, including good oral hygiene, is imperative for patient comfort during this time.
Nausea and Vomiting
Many seriously ill patients experience nausea, frequently without vomiting. Nausea may arise with GI problems (eg, constipation, gastritis), metabolic abnormalities (eg, hypercalcemia, uremia), drug adverse effects, increased intracranial pressure secondary to cerebral cancer, and psychosocial stress. When possible, treatment should match the likely cause—eg, stopping NSAIDs, treating gastritis with H2 blockers, and trying corticosteroids for patients with known or suspected brain metastases. If nausea is due to gastric distention and reflux, metoclopramide (eg, 10 to 20 mg po or sc qid prn or given on a scheduled basis) is useful because it increases gastric tone and contractions while relaxing the pyloric sphincter.
Patients with no specific cause of nausea may benefit from treatment with a phenothiazine (eg, promethazine 25 mg po qid; prochlorperazine 10 mg po before meals or, for patients who cannot take oral drugs, 25 mg rectally bid). Anticholinergic drugs such as scopolamine and the antihistamines meclizine and diphenhydramine prevent recurrent nausea in many patients. Combining lower doses of the previously mentioned drugs often improves efficacy. Second-line drugs for intractable nausea include haloperidol (started at 1 mg po or sc q 6 to 8 h, then titrated to as much as 15 mg/day). The 5-HT3 antagonists ondansetron and granisetron often dramatically relieve chemotherapy-induced nausea. Cost often makes these antagonists 2nd-line drugs for more complex causes of nausea in dying patients.
Nausea and pain due to intestinal obstruction are common among patients with widespread abdominal cancer. Generally, IV fluids and nasogastric suction are more burdensome than useful. Symptoms of nausea, pain, and intestinal spasm respond to hyoscyamine (0.125 to 0.25 mg q 4 h sublingually or sc), scopolamine (1.5 mg topically), morphine (given sc or rectally), or any of the other previously mentioned antiemetics. Octreotide 150 μg sc or IV q 12 h inhibits GI secretions and dramatically reduces nausea and painful distention. Given with antiemetics, octreotide usually eliminates the need for nasogastric suctioning. Corticosteroids (eg, dexamethasone 4 to 6 mg IV, IM, or rectally tid) may decrease obstructive inflammation at the tumor site and temporarily relieve the obstruction. IV fluids may exacerbate obstructive edema.
Constipation is common among dying patients because of inactivity, use of opioids and drugs with anticholinergic effects, and decreased intake of fluids and dietary fiber. Regular bowel movements are essential to the comfort of dying patients, at least until the last day or two of life. Laxatives help prevent fecal impaction, especially in patients receiving opioids. Monitoring bowel function regularly is essential. Most patients do well on a twice/day regimen of stool softener (eg, docusate) plus a mild stimulant laxative (eg, casanthranol, senna). If stimulant laxatives cause cramping discomfort, patients may respond to increased doses of docusate alone or an osmotic laxative, such as lactulose or sorbitol started at 15 to 30 mL po bid and titrated to effect.
Soft fecal impaction may be treated with a bisacodyl suppository or saline enema. For a hard fecal impaction, a mineral oil enema may be given, possibly with an oral benzodiazepine (eg, lorazepam) or an analgesic, followed by digital disimpaction. After disimpaction, patients should be placed on a more aggressive bowel regimen to avoid recurrence.
Many dying patients are immobile, poorly nourished, incontinent, and cachectic and thus are at risk of pressure ulcers (see also Pressure Ulcers). Prevention requires relieving pressure by rotating the patient or shifting the patient's weight every 2 h; a specialized mattress or continuously inflated air-suspension bed may also help. Incontinent patients should be kept as dry as possible. Generally, use of an indwelling catheter, with its inconvenience and risk of infection, is justified only when bedding changes cause pain or when patients or family members strongly prefer it.
Mental changes that can accompany the terminal stage of a disorder may distress patients and family members; however, patients are often unaware of them. Confusion (delirium) is common; causes include drugs, hypoxia, metabolic disturbances, and intrinsic CNS disorders. If the cause can be determined, simple treatment may enable patients to communicate more meaningfully with family members and friends. Patients who are comfortable and less aware of their surroundings may do better with no treatment. When possible, the physician should ascertain the preferences of patients and family members and use them to guide treatment.
Simple causes of confusion and agitation should be sought. Agitation and restlessness often result from urinary retention, which resolves promptly with urinary catheterization. Confusion in debilitated patients is worsened by sleep deprivation. Agitated patients may benefit from benzodiazepines; however, benzodiazepines may also cause confusion. Poorly controlled pain may cause insomnia or agitation. If pain has been appropriately controlled, a nighttime sedative may help.
Family members and visitors may help lessen confusion by frequently holding the patient's hand and repeating where the patient is and what is happening. Patients with severe terminal agitation resistant to other measures may respond best to barbiturates; family members should be made aware that when near death, patients do not usually wake up much after starting these drugs. Pentobarbital, a rapid-onset, short-acting barbiturate, may be given as 100 to 200 mg IM q 4 h prn. Phenobarbital, which is longer-acting, may be given po, sc, or rectally. Midazolam, a short-acting benzodiazepine, also is often effective.
Most dying patients experience some depressive symptoms. Providing psychologic support and allowing patients to express concerns and feelings are usually the best approach. A skilled social worker, physician, nurse, or chaplain can help with these concerns.
A trial of antidepressants is often appropriate for patients who have persistent, clinically significant depression. SSRIs are useful for patients likely to live beyond the 4 wk usually needed for onset of the antidepressant effect. Depressed patients with anxiety and insomnia may benefit from a sedating tricyclic antidepressant given at bedtime. For patients who are withdrawn or who have vegetative signs (see Coma and Impaired Consciousness: Symptoms and Signs), methylphenidate may be started at 2.5 mg po once/day and increased to 2.5 to 5 mg bid (given at breakfast and lunch) as necessary. Methylphenidate (same dosage) can provide a few days or weeks of increased energy for patients who are fatigued or somnolent because of analgesics. Methylphenidate has a rapid effect but may precipitate agitation. Although its duration of action is short, adverse effects are also short-lived.
A few people approach death peacefully, but more patients and family members experience stressful periods. Death is particularly stressful when interpersonal conflicts keep patients and family members from sharing their last moments together in peace. Such conflicts can lead to excessive guilt or inability to grieve in survivors and can cause anguish in patients. A family member who is caring for a dying relative at home may experience physical and emotional stress. Usually, stress in patients and family members responds to compassion, information, counseling, and sometimes brief psychotherapy. Community services may be available to help relieve caregiver burden. Sedatives should be used sparingly and briefly.
When a partner dies, the survivor may be overwhelmed by having to make decisions about legal or financial matters or household management. For an elderly couple, the death of one may reveal the survivor's cognitive impairment, for which the deceased partner had compensated. The clinical team should identify such high-risk situations so that they can mobilize the resources needed to prevent undue suffering and dysfunction.
Grieving is a normal process that usually begins before an anticipated death. For patients, grief often starts with denial caused by fears about loss of control, separation, suffering, an uncertain future, and loss of self. Traditionally, the stages after grief were thought to occur in the following order: denial, anger, bargaining, depression, and acceptance. However, the stages that patients go through and their order of occurrence vary. Members of the clinical team can help patients accept their prognosis by listening to their concerns, helping them understand that they can control important elements of their life, explaining how the disorder will worsen and how death will come, and assuring them that their physical symptoms will be controlled. If grief is still very severe or causes psychosis or suicidal ideation or if the patient has a previous severe mental disorder, referral for professional evaluation and grief counseling may be needed.
Family members may need support in expressing grief. Any clinical team member who has come to know the patient and family members can help them through this process and direct them to professional services if needed. Physicians and other clinical team members need to develop regular procedures that ensure follow-up of grieving family members.
Last full review/revision November 2007 by Joanne Lynn, MD, MA, MS