Symptoms During a Fatal Illness

Adequate medications should be given early, rather than held off until the pain is intolerable. There is no usual dose. Some people need only small doses, whereas others need much larger doses for the same effect. If a lower opioid dose is no longer effective, doctors should increase the dose, often by doubling it. Drug dependence may result from regular opioid use but causes no problems in dying people except the need to avoid sudden withdrawal and its uncomfortable symptoms. Drug addiction simply is not a concern when a person is close to death.

Opioids may cause side effects such as nausea, sedation, confusion, constipation, or slow or shallow breathing (respiratory depression). Most of these side effects, except for constipation, usually resolve over time or when another opioid is substituted. Constipation can often be minimized by starting laxatives even before opioids are given. Opioids may occasionally cause delirium and seizures. People who have severe or persistent side effects or inadequate pain relief often benefit from treatment by a pain specialist.

For severe pain located in one spot, a local anesthetic injected into or around a nerve (a “nerve block”) given by an anesthesiologist (a doctor with special training in managing pain and supporting people during surgery) may provide relief with few side effects.

Pain-modification techniques (such as guided imagery, hypnosis, acupuncture, relaxation, yoga, Reiki, and biofeedback) help some people. Counseling for stress and anxiety may be very helpful as well as may spiritual support from a chaplain or religious leader. Some people at end-of-life use cannabis products for a variety of symptoms, including relief of pain, insomnia, agitation, and depression.

When these treatments are not effective, most doctors who work in hospice programs agree that a person suffering by struggling to breathe should be able to choose an opioid dose that is high enough to relieve the perception of dyspnea, even if the person might become unconscious. A person who wants to avoid dyspnea at the end of life should make sure that the doctor will treat this symptom fully, even if such a treatment leads to unconsciousness or hastens death somewhat.

Digestive tract problems, including a dry mouth, nausea, constipation, difficulty swallowing, and loss of appetite, are common among people who are very sick. Some of these problems are caused by the disease. Others, such as constipation, can be side effects of medications.

Many dying people lose the ability to control bowel and bladder function (incontinence), either because of the disease or general weakness. Disposable adult diapers and attentive hygiene measures usually address the problem. Incontinent people should be kept as dry as possible, usually with frequent bedding and diaper changes. A catheter (a small tube placed into the bladder) increases the risk of a urinary tract infection and should be used only when bedding changes cause pain or when dying people or their family members strongly prefer it.

Dying people are susceptible to pressure sores (also called pressure ulcers or bedsores), which cause discomfort and can lead to infections. People who are very ill, move very little, are confined to bed, are incontinent, are poorly nourished, or sit much of the time are at greatest risk. Ordinary pressure on the skin from sitting or moving across sheets may tear or damage the skin. Every effort should be made to prevent pressure sores by protecting the skin, and promptly reporting reddened or broken skin to the doctor or nurse. Incontinent people should be kept as dry as possible. Position changes every 2 hours decrease the likelihood of pressure sores. A specialized mattress or continuously inflated air-suspension bed may also help.

Most fatal illnesses cause fatigue. A person who is dying can try to save energy for activities that really matter. Often, making a trip to the doctor’s office or continuing an exercise that is no longer helping is not essential, especially if doing so saps the energy needed for more satisfying activities. Sometimes, stimulant medications help.

Feeling sad when contemplating the end of life is a natural response, but this sadness is not depression. People who are depressed usually lack interest in what is going on and may see only the bleak side of life or feel no emotions. Providing psychological support and allowing people to express concerns and feelings are usually the best approaches. A skilled social worker, doctor, nurse, or chaplain can help with these concerns. Dying people and their family should talk to the doctor about such feelings so that depression can be diagnosed and treated. Treatment (usually a combination of antidepressant medications and counseling) is often effective, even in the last weeks of life, because it improves the quality of the time remaining.

Anxiety is more than normal worry: Anxiety is feeling so worried and fearful that it interferes with daily activities. Feeling uninformed or overwhelmed can cause anxiety, which may be relieved by asking caregivers for more information or help. People who typically feel anxiety during periods of stress may be more likely to feel anxiety when dying. Strategies that have helped people in the past—including reassurance, medications, and channeling worries into productive endeavors—will probably help them when dying. Dying people troubled by anxiety should get help from counselors and may need antianxiety medications.

People who are very sick become confused easily. Confusion may be triggered by a medication, a minor infection, a chemical imbalance, or even a change in living arrangements. Reassurance and reorientation may relieve the confusion, but the doctor should evaluate the possibility of treatable causes. People who are very confused may need to be mildly sedated or constantly attended by a caregiver.

A dying person who is confused may not understand dying and is often unaware of any confusion. Near death, a confused person sometimes has surprising periods of clear thinking. These episodes may be very meaningful to family members but can be misunderstood as improvement. The family should be prepared for the possibility of such episodes but should not count on them happening.

Almost half of dying people are unconscious most of the time during their last few days. If family members believe that a dying person who is unconscious is still able to hear, they can say their goodbyes as if the person hears them. Drifting off while unconscious is a peaceful way to die, especially if the person and family are at peace and all plans have been made.

Some people approach death peacefully, but most dying people and their family members have stressful periods. Death is particularly stressful when interpersonal conflicts keep dying people 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 dying people. A family member who is caring for a dying relative at home may experience physical and emotional stress. Usually, stress in dying people and family members can be relieved somewhat with counseling or brief psychotherapy. Community services may be available to help relieve caregiver burden. If sedatives are prescribed for a caregiver, they usually should be taken 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 older couple, the death of one may reveal the survivor’s thought impairment, for which the deceased partner had compensated. If such a situation is suspected, friends and family should tell the care team before death occurs, so that resources needed to prevent undue suffering and dysfunction can be obtained.

People who are frail or have dementia or a neuromuscular diseases (for example, 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 person may be unable to demonstrate appreciation for the assistance. The medical team works closely with caregivers to prevent falls, infections, and other risks, as well as to provide encouragement and support to the family and caregivers.