Symptom Relief for the Dying Patient

A significant portion of patients experience unrelieved pain at the end of life despite the availability of pain management strategies. Approximately 50% of all patients dying of cancer have severe pain, yet only 50% of patients with severe pain receive reliable pain relief (1). In a nationwide cohort study, about 25% of patients who were in their final week of life had unrelieved pain, despite being prescribed opioids (2). Many patients dying of organ system failure and dementia also have severe pain. Family members and physicians may persistently use inadequate doses of pain medications due to their own misconceptions about pain and the opioids and other medications used to treat it. Clinicians must remember that the signs and symptoms of chronic pain (eg, fatigue, depression, withdrawal from activity, resignation) are quite different from those of acute pain (eg, crying out, localizing the apparent source, agitation, demands for relief).

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 medication at sufficient dosage, although aggressive treatment may also cause sedation or confusion. Commonly used medications s are aspirin, acetaminophen, or nonsteroidal anti-inflammatory drugs (NSAIDs) for mild pain; oxycodone for moderate pain; and hydromorphone, morphine, or fentanyl for severe pain (seeTreatment of Pain).

Dyspnea, one of the most feared symptoms, is extremely frightening to dying patients. The main causes of dyspnea are heart and lung disorders. Other factors include severe anemia and chest wall or abdominal disorders that cause painful respiration (eg, rib fracture) or that impede respiration (eg, massive ascites). Metabolic acidosis causes tachypnea but does not usually cause a sensation of dyspnea. Anxiety (sometimes due to delirium or pain) causes tachypnea with or without a sensation of dyspnea.

Reversible causes should be treated specifically. For example, placing a chest tube for tension pneumothorax or draining a pleural effusion provides quick and definitive relief. Supplemental oxygen can sometimes correct hypoxemia. Nebulized albuterol and oral or injectable corticosteroids may relieve bronchospasm and bronchial inflammation. 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. If death is expected and goals of care focus on comfort, then pulse oximetry, arterial blood gases, electrocardiography, and imaging are not indicated. Clinicians should use general comfort-oriented treatments including positioning (eg, sitting up), increasing air movement with a fan or open window, and bedside relaxation techniques.

Opioids are the drugs of choice for dyspnea near the end of life. Low doses of morphine as needed help reduce breathlessness in an opioid-naive patient. Morphine may blunt the medullary response to CO2 retention or O2 decline, reducing dyspnea and decreasing anxiety without causing harmful respiratory depression. If a patient is currently taking opioids for pain, dosages that relieve the new onset of dyspnea often must be double the patient’s usual dosage. Benzodiazepines often help relieve anxiety caused by dyspnea and the fear of a return of dyspnea.

Oxygen may also give psychological comfort to patients and family members even if hypoxemia persists. Patients usually prefer oxygen via nasal cannula. An oxygen face mask may increase agitation in a dying patient. Nebulized saline may help patients with viscous secretions.

The "death rattle" is noisy breathing that results from air moving across pooled secretions in the oropharynx and bronchi and often portends death in hours or days. The death rattle is not usually a source of discomfort for the dying patient but can disturb family members and caregivers. To minimize the death rattle, caregivers should limit patients' fluid intake (eg, oral, IV, enteral) and position patients on their side or semi-prone. Oropharyngeal suctioning is generally ineffective in reaching the pooled secretions and may cause discomfort. Airway congestion is best managed with an anticholinergic drug such as scopolamine, glycopyrrolate, or atropine. Adverse effects mostly occur with repeated doses and include blurred vision, sedation, delirium, palpitations, hallucinations, constipation, and urinary retention. Glycopyrrolate does not cross the blood-brain barrier and results in fewer neurotoxic adverse effects than other anticholinergic medications.

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 are often easily treatable include gastritis, constipation, toothaches, oral candidiasis, pain, and nausea. Some patients benefit from appetite stimulants such as oral corticosteroids (dexamethasone or prednisone), megestrol, or mirtazapine. However, if a patient is close to death, family members should be helped to understand that neither food nor hydration is necessary to maintain the patient’s comfort.

IV fluids and nutritional support (eg, parenteral nutrition, enteral nutrition) do not prolong the life of dying patients, may increase discomfort, and even hasten death. Adverse effects of artificial nutrition in dying patients can include pulmonary congestion, pneumonia, edema, and pain associated with inflammation. Conversely, dehydration and ketosis due to low caloric intake correlate with analgesic effects and absence of discomfort. The only reported discomfort due to dehydration near death is xerostomia, which can be prevented and relieved with oral swabs or ice chips.

Debilitated and cachectic patients may live for several weeks with no food and minimal hydration. Family members should understand that stopping medically supplied 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 (see also Nutritional Support for Patients Who Are Dying).

Voluntary stopping of eating and drinking (VSED) is a deliberate decision by a competent individual to hasten death by ceasing intake of food and fluids (1).

Many seriously ill patients experience nausea, frequently without vomiting. Nausea may arise with gastrointestinal problems (eg, constipation, gastritis), metabolic abnormalities (eg, hypercalcemia, uremia), adverse effects of medications, increased intracranial pressure secondary to brain cancer, and psychosocial stress. When possible, treatment should match the likely cause—eg, stopping NSAIDs, treating gastritis with proton pump inhibitors, prescribing corticosteroids for patients with known or suspected brain metastases. If nausea is due to gastric distention and reflux, metoclopramide is useful because it increases gastric tone and contractions while relaxing the pyloric sphincter.

The 5-hydroxytryptamine (5-HT)3 antagonists ondansetron and granisetron often dramatically relieve nausea. Patients with no specific cause of nausea may benefit from treatment with a phenothiazine such as prochlorperazine. Anticholinergic medications such as scopolamine and the antihistamines meclizine and diphenhydramine prevent recurrent nausea in many patients. Combining low doses of the previously mentioned medications often improves efficacy. Intractable nausea may respond to haloperidol.

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. Patients may prefer to vomit occasionally rather than have nasogastric suction. Symptoms of nausea, pain, and intestinal spasm respond to hyoscyamine, scopolamine, morphine, or any of the other previously mentioned antiemetics. Octreotide inhibits gastrointestinal secretions and dramatically reduces nausea and painful distention. Given with antiemetics,octreotideusually eliminates the need for nasogastric suctioning. Corticosteroids (dexamethasone) 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 medications with anticholinergic effects, as well as decreased intake of fluids and dietary fiber. Regular bowel movements are essential to the comfort of dying patients, until the last day or two of life. Monitoring bowel function is essential. Laxatives prevent fecal impaction, especially in patients receiving opioids. Most patients do well on a twice daily regimen of a mild stimulant laxative (eg, casanthranol, senna). If stimulant laxatives cause cramping discomfort, patients may respond to an osmotic laxative, such as lactulose or sorbitol. Although there are a wide variety of laxatives, none has been proven to be superior to others in this clinical situation (1).

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 are at substantial risk of pressure injuries. Prevention requires relieving pressure by shifting the patient’s weight every 2 hours; 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 when bedding changes cause pain or when patients or family members strongly prefer it. Pressure wounds warrant debriding and other intrusive treatments only if the patient is likely to live for months. Otherwise, pressure wounds are unlikely to heal or improve in most dying patients; thus, intrusive treatments are often troublesome and without benefit.

Psychological changes that accompany the terminal stage of a disorder may distress patients and family members; however, patients are often unaware of them. Delirium is common though somewhat preventable with repeated reorientation, the calming presence of a caring person, and limiting the use of psychoactive medications (1). Causes of delirium include medications, sleep deprivation, hypoxia, metabolic disturbances, and intrinsic central nervous system disorders. If the cause can be determined, simple treatment may enable patients to communicate more meaningfully with family members and friends. For example, sleep deprivation may be caused by poorly controlled pain. Confusion in debilitated patients is worsened by sleep deprivation, which may be prevented by using a familiar bedtime routine and darkened room.

Agitated patients often benefit from a calming human presence, prayer, massage, and physical activity. Antipsychotic medications or benzodiazepines may also help, but they often cause substantial adverse effects, including confusion. Patients near death who are confused or calmly hallucinating, but who appear comfortable and less aware of their surroundings may do better with no treatment. Sometimes the patient reports seeing loved ones long dead or having memories, such as of a packed suitcase, that may be reassuring to the patient but disorienting to the family.

Family members and visitors may help lessen confusion by frequently holding the patient’s hand, repeating where the patient is, and describing what is happening. Patients with severe terminal agitation resistant to other measures may respond best to barbiturates. However, family members should be told that, after these medications are used, patients may not regain the capacity for coherent interaction. Medications to consider include pentobarbital, a rapid-onset, short-acting barbiturate, and phenobarbital, which is longer-acting.

Frailty, dementia, and neuromuscular diseases (eg, advanced Parkinson disease) have a prolonged course with declining function and persistently unclear prognosis for survival. Family members often provide personal care for years, and the patient may be unable to demonstrate appreciation for the assistance. The medical team must work with caregivers to prevent falls, infections, and endangering behaviors by the patient, as well as to provide encouragement and support to the family and caregivers. Constancy of responsiveness, awareness of and navigation to support services in the community, and thoughtful plans of care for the patient's chronic conditions are very helpful. Death may become predictable due to an intercurrent illness such as infection or stroke, but patients can survive with minimal functional capacity for long periods with reliable personal care. For such patients, issues around decline and death should be anticipated and plans of care should be developed.

Most dying patients experience some depressive symptoms. Providing psychological 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 both persistent, clinically significant depression and a predicted survival duration longer than the typical 2- to 4-week onset of 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, methylphenidate may be started and quickly provides a few days or weeks of increased energy for patients who are fatigued or somnolent because of analgesics and advanced illness. Methylphenidate has a rapid effect but may precipitate agitation. Although its duration of action is short, adverse effects are also short-lived.

Serious medical illness is a significant risk factor for suicidality. Risk factors for suicide are common among those sick enough to die; they include advanced age, male sex, psychiatric comorbidity, financial strain, an end-stage HIV infection (AIDS) diagnosis, and uncontrolled pain. Cancer patients have nearly twice the incidence of suicide than the general population, and patients with lung, gastric, and head and neck cancers have the highest suicide rates among all patients with cancer (1). Clinicians should routinely screen seriously ill patients for depression and suicidal thoughts and plans. To protect both patients and caregivers, the medical team should screen every dying patient and family for firearms and other weapons and encourage safely securing all weapons (eg, firearms secured and stored separately from ammunition). Psychiatrists should urgently evaluate all patients who threaten self-harm or have suicidal thoughts.

Some people approach death peacefully, but more typically patients and family members have stressful periods. Death is particularly stressful when interpersonal conflicts prevent patients and family members from sharing their last moments together. Such conflicts can lead to excessive guilt or inability to grieve in survivors and cause anguish in patients. A family member who cares for a dying relative at home may experience physical injuries (eg, from trying to prevent a fall in a weakening patient), emotional stress, and suffering. Usually, stress in patients and family members responds to compassion, information, counseling, and sometimes brief psychotherapy. Community services may be available to relieve caregiver burden. Sedatives should be used sparingly and briefly.

When a partner dies, the survivor may be overwhelmed by making decisions about legal issues, financial matters, or household management. For an older couple, the death of one partner may reveal the survivor’s cognitive impairment, for which the deceased person 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. Hospice programs that receive Medicare funds in the United States are required to provide bereavement services to family and friends for at least a year after the death of the hospice patient.

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. The stages after loss previously were thought to occur in the following order: denial, anger, bargaining, depression, and acceptance. However, the stages that patients and survivors go through and their order of occurrence vary. Members of the clinical team can help patients and families accept the prognosis by listening to their concerns, helping them understand that they can control important elements of their lives, explaining how the disorder will worsen and how death will come, and assuring them that their physical symptoms will be controlled. Sometimes discussing with future survivors the specific tasks that need to be dealt with after the death (eg, how to be notified and what memorial services will take place), helps them begin to cope pragmatically. If grief is still very severe or causes psychosis or suicidal ideation or if the patient or family member has a previous severe psychiatric disorder, referral for professional evaluation and grief counseling may help the person cope.

Any clinical team member who knows the patient and family members can aid them through this process and direct them to professional services if needed. Physicians and other clinical team members should develop regular procedures that ensure follow-up for grieving family members.