Physical, psychological, emotional, and spiritual distress is common among patients living with fatal illness, and patients commonly fear protracted and unrelieved suffering. Health care providers help reassure patients that distressing symptoms are regularly anticipated, prevented and, when present, 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 may have many causes and 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. Prudent reevaluation and appropriate discontinuation of chronic medications is warranted.
When survival is likely to be brief, symptom severity frequently dictates initial and ongoing treatment.
Pain in 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).
Opioid therapy
In dying patients, oral opioid therapy is convenient and cost-effective. Sublingual administration is also convenient because it does not require patients to swallow. Once a patient is on a stable, effective dose, transdermal patches may be used to provide steady relief without the need for frequent dosing. Opioids can also be given rectally or by injection (IM, IV, or subcutaneously). Long-acting opioids are best for long-lasting pain. Physicians should prescribe opioids in adequate dosages on a continuous basis and make additional, short-acting opioids available for treatment or prevention of breakthrough pain and anticipated painful activities (eg, dressing changes, physical therapy).
Adverse effects of opioids include nausea, sedation, confusion, constipation, pruritus, and respiratory depression. Opioid-induced constipation should be treated prophylactically. Patients usually develop substantial tolerance to the respiratory depressant and sedative effects of opioids but develop much less tolerance for the analgesic and constipating effects. Opioids may also cause myoclonus, hyperactive delirium, hyperalgesia, and seizures. These neurotoxic effects may result from accumulation of toxic metabolites and usually resolve when another opioid is substituted. Patients with these adverse effects and continued pain often warrant consultation with a palliative care or pain specialist.
3).
Other adjunctive therapies
For severe localized pain, regional nerve blocks administered by an anesthesiologist or physician trained in pain management may provide relief with few adverse effects. Various nerve-blocking techniques may be used. Indwelling epidural or intrathecal catheters provide continuous infusion of analgesics, often mixed with anesthetic drugs.
Pain-modification techniques (eg, guided imagery, hypnotherapy, acupuncture, yoga, relaxation, biofeedback, Reiki) help some patients. Counseling for stress and anxiety may be very useful, as may spiritual support from a chaplain or religious leader. Other modalities such as art therapy, music therapy, and aromatherapy may be complementary to medications.
Patients at end of life use cannabis products for a variety of symptoms, including relief of pain, insomnia, agitation, and depression. The available evidence to support the use of cannabis products for palliative care is limited and mostly of low quality, partly due to lack of standardization of cannabis being used, outcomes measured, and other methodologic issues (4450), leading to increased concentrations of drugs metabolized by these pathways (5). Advice from a skilled clinical pharmacologist may be helpful in such circumstances.
Many patients and families approach serious illnesses with reliance on remedies that are not visible in mainstream medicine, including herbs, unconventional uses of medications, manipulations of the skin and body, prayer, and ritual. Clinicians must discuss these practices and treatments in an open and affirming way so patients and families are willing to describe all of their remedies. Some therapies have substantial interactions with intended traditional medical care, such as drug-drug interactions, and these must be considered in creating the overall care plan. Other practices, such as prayer, are medically harmless and, if they seem to help with the patient's overall sense of well being, may be encouraged, contemporaneously with ongoing traditional medical care. Even when patients choose to discontinue traditional medical treatments, clinicians should maintain a professional relationship and be available if problems or questions arise.
Pain references
1. van den Beuken-van Everdingen MH, Hochstenbach LM, Joosten EA, Tjan-Heijnen VC, Janssen DJ: Update on Prevalence of Pain in Patients With Cancer: Systematic Review and Meta-Analysis. J Pain Symptom Manage. 2016;51(6):1070-1090.e9. doi:10.1016/j.jpainsymman.2015.12.340
2. Klint Å, Bondesson E, Rasmussen BH, Fürst CJ, Schelin MEC: Dying With Unrelieved Pain-Prescription of Opioids Is Not Enough. J Pain Symptom Manage. 2019;58(5):784-791.e1. doi:10.1016/j.jpainsymman.2019.07.006
3. Nielsen S, Degenhardt L, Hoban B, Gisev NPharmacoepidemiol Drug Saf. 2016;25(6):733-737. doi:10.1002/pds.3945
4. Kogan M, Sexton M: Medical Cannabis: A New Old Tool for Palliative Care. J Altern Complement Med. 2020;26(9):776-778. doi:10.1089/acm.2019.0184
5. Balachandran P, Elsohly M, Hill KP J Gen Intern Med. 2021;36(7):2074-2084. doi:10.1007/s11606-020-06504-8
Dyspnea in the Dying Patient
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.
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.
Anorexia in the Dying Patient
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).
Anorexia reference
1. Wechkin H, Macauley R, Menzel PT, Reagan PL, Simmers N, Quill TE: Clinical Guidelines for Voluntarily Stopping Eating and Drinking (VSED). J Pain Symptom Manage. 2023;66(5):e625-e631. doi:10.1016/j.jpainsymman.2023.06.016
Nausea and Vomiting in the Dying Patient
octreotide
Constipation in the Dying Patient
1).
Constipation 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 in the Dying Patient
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.
Delirium and Confusion in the Dying Patient
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.
Delirium and confusion reference
1. Delirium: prevention, diagnosis and management in hospital and long-term care. London: National Institute for Health and Care Excellence (NICE); January 18, 2023.
Frailty, Dementia, and Neuromuscular Diseases in the Dying Patient
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.
Depression and Suicide in the Dying Patient
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
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.
Depression and suicide reference
1. Kam D, Salib A, Gorgy G, et al: Incidence of Suicide in Patients With Head and Neck Cancer. JAMA Otolaryngol Head Neck Surg. 2015;141(12):1075-1081. doi:10.1001/jamaoto.2015.2480
Stress and Grief Surrounding the Dying Patient
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.
