Physical, psychologic, emotional, and spiritual distress is common among patients living with fatal illness, and patients commonly fear protracted and unrelieved suffering. Health care providers can reassure patients that distressing symptoms can often be anticipated and prevented and, when present, can be treated.
Symptom treatment 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, often serve patients 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 metabolism and clearance.
When survival is likely to be brief, symptom severity frequently dictates initial treatment.
Pain
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 relieve it, resulting in serious and persistent underdosing.
Adverse effects of opioids include nausea, sedation, confusion, constipation, and respiratory depression. Opioid-induced constipation
When a stable opioid dose becomes inadequate, increasing the dose by 1½ to 2 times the previous dose (eg, calculated based on daily dose) is reasonable. Usually, serious respiratory depression occurs only if the new dose is much more than twice the previously tolerated dose.
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 imagery, hypnotherapy, acupuncture, relaxation, biofeedback) help some patients. Counseling for stress and anxiety may be very helpful, as may spiritual support from a chaplain.
Dyspnea
Dyspnea is one of the most feared symptoms and 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 cause a sensation of dyspnea. Anxiety (sometimes due to delirium or pain) can cause tachypnea with or without a feeling of dyspnea.
Oxygen may also give psychologic comfort to patients and family members even if it does not correct hypoxemia. Patients usually prefer oxygen via nasal cannula. An oxygen face mask may increase agitation of a dying patient. Nebulized saline may help patients with viscous secretions.
Anorexia
IV fluids, total parenteral nutrition, and tube feedings 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 caloric restriction 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.
Even 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.
Nausea and Vomiting
Constipation
1).
Reference
1. Candy B, Jones L, Larkin PJ, et al: Laxatives for the management of constipation in people receiving palliative care. Cochrane Database of Systematic Reviews, Issue 5. Art. No.: CD003448, 2015. doi: 10.1002/14651858.CD003448.pub4
Pressure Injuries
Many dying patients are immobile, poorly nourished, incontinent, and cachectic and thus are at risk of pressure injuries. Prevention requires relieving pressure by rotating the patient or 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 only when bedding changes cause pain or when patients or family members strongly prefer it.
Delirium and Confusion
Mental changes that can accompany the terminal stage of a disorder may distress patients and family members; however, patients are often unaware of them. Delirium is common. Causes include drugs, 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. 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 delirium 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 antipsychotics or 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.
Depression and Suicide
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. Selective serotonin reuptake inhibitors (SSRIs) are useful for patients likely to live beyond the 4 weeks 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
Suicide
Serious medical illness is a significant risk factor for suicidality. Other risk factors for suicide are common among those sick enough to die; they include advanced age, male sex, psychiatric comorbidity, financial strain, an AIDS diagnosis, and uncontrolled pain. Cancer patients have nearly twice the incidence of suicide than the general population, and patients with lung, stomach, and head and neck cancers have the highest suicide rates among all patients with cancer. Clinicians should routinely screen seriously ill patients for depression and suicidal thoughts. Psychiatrists should urgently evaluate all patients who seriously threaten self-harm or have serious suicidal thoughts.
Stress and Grief
Some people approach death peacefully, but more people and family members have 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. In the US, hospice programs that receive Medicare funds are required to provide bereavement services to family and friends for at least a year after the death of the hospice patient.
Grief
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 help the person cope.
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.
