Reducing Suffering

Pain

Pain is a common symptom for people living with a life-threatening chronic disease. It is particularly common for those very near the end of life. The disease itself can cause pain, such as when cancer spreads to the bones or the spinal cord. Certain treatments for disease can cause pain, such as when anticancer drugs or radiation alter nerve activity (neuropathic pain). In addition, certain conditions that accompany dying can cause pain, such as when immobility leads to stiff joints, constipation, or pressure sores.

Some types of pain are better tolerated than others, but pain of any type generally diminishes the quality of a person's life—and death. Pain is affected by a person's other symptoms, mood, quality of sleep, emotional and social support systems, and spirituality or religious beliefs.

A doctor carefully assesses the pain to determine the best treatment approach. People with pain and those who care for them need to know that pain can be controlled satisfactorily without serious side effects.

Because a person with a life-threatening chronic disease often has several types of pain, treatment that involves several approaches is often most effective. Pain relievers (analgesics) are a mainstay of treatment. However, the effectiveness of drug treatment is often improved when combined with other kinds of treatment, such as massage and the use of heat. Once treatment is started, health care practitioners continue to assess the effectiveness of pain control. It is important that people with severe pain alert their health care practitioners when pain is poorly controlled or when side effects of treatment develop.

People with severe pain often need opioid analgesics as part of their treatment plan. Opioid analgesics are extremely effective in relieving pain. Side effects include constipation, sleepiness, confusion, nausea, and itching. All of these side effects can be controlled so that opioid analgesics can be used without fear. Opioid analgesics may also slow breathing, but this side effect is extremely rare when dosages are adjusted properly.

People should discuss their preferences for drug and nondrug treatments. These discussions should also clarify specific goals of treatment, such as whether to treat pain aggressively, even when doing so may increase sedation at the end of life. There is no evidence that properly administered analgesics hasten death. On the contrary, evidence suggests that people live longer when their pain is under better control. And, dying people need not worry about becoming dependent on analgesics. Finally, knowing possible indications of pain, such as grimacing and fast breathing, gives family and friends a way to monitor pain when a dying person can no longer speak for himself.

Information about what to expect can help a dying person tolerate new or worsening symptoms. Companionship, emotional encouragement, and spiritual counseling all may lessen the anxiety, anger, depression, fear, insomnia, and loneliness that make pain worse.

Shortness of Breath and Coughing

Shortness of breath and coughing are experienced by many people with life-threatening chronic diseases, especially near the end of life. Shortness of breath is any unpleasant feeling of uncomfortable breathing. It can be frightening for the person suffering it as well as for family members.

Many complications can cause shortness of breath and coughing: infection, spread of cancer, fluid accumulation in or around the lungs, fluid collection around the heart (pericardial effusion) or in the abdomen (ascites), blood clots in the lung (pulmonary embolus), or compression of large veins in the chest due to cancer. Some medical treatments may also contribute to shortness of breath at the end of life. For example, fluids given to maintain hydration or provide nutrition may interfere with breathing if they unintentionally accumulate in the lungs, the space that surrounds the lungs (pleural space), and the space that surrounds organs within the abdomen (abdominal cavity). The extra fluid may prevent the person from breathing normally.

Often there is no clear cause of shortness of breath. A low red blood cell count (anemia), a high level of carbon dioxide in the blood, weakness, poor positioning in bed, a feeling that there is not enough air in the room, and anxiety all contribute to the sensation. Fear and stress expressed by family members as well as restless activity in a dying person's room can also worsen breathing.

Treatment of shortness of breath and coughing involves treating the underlying causes. Therefore, any treatment that is contributing to the problem, such as intravenous fluids, may need to be discontinued. When the underlying cause cannot be easily treated, a person may feel best while sitting up and breathing cool air in a room free of crowding and unnecessary commotion. A fan sometimes provides a sense of relief, as do physical touch, massage, and other calming distractions. Oxygen therapy is sometimes helpful. Some people may breathe more restfully when moisture is added to the air. Moisture can be added either by humidifying the entire room or by adding mist to oxygen received through a face mask or through a device that fits into both nostrils (nasal prongs).

When these remedies do not sufficiently relieve symptoms, opioid analgesics, such as morphine, can relax a person's breathing and can actually have helpful effects on the heart, lungs, and blood vessels. Antianxiety drugs (such as benzodiazepines) are also useful. Bronchodilators may help, as may drugs that decrease mucus secretions, such as scopolamine and hyoscine. Coughing can also be treated with codeine and other cough suppressants; corticosteroids may also help.

Digestive Problems

Digestive problems, including nausea and vomiting, loss of appetite (anorexia), mouth problems, constipation, and diarrhea, are common in people with life-threatening chronic diseases, especially near the end of life.

Nausea and vomiting can, like pain and shortness of breath, prevent a person from thinking of anything else. Nausea and vomiting have dozens of causes, including opioid and anticancer drugs; constipation; infection; sores (ulcers) in the mouth, esophagus, or stomach; blockage of the stomach and intestines; liver and kidney failure; and altered calcium and sodium levels in the blood.

The underlying causes are treated if possible. A nauseated person who cannot eat may still enjoy ice chips. Antinausea drugs are almost always helpful. Some of these drugs can be used anytime. Others are used in specific situations, such as when an anticancer drug, constipation, or intestinal blockage causes nausea. Acupuncture and acupressure (which involve stimulating certain parts of the body with needles or with pressure) appear to be effective against nausea due to anticancer drugs, cancer itself, and other causes.

Loss of appetite can result from difficulty chewing due to dry mouth, mouth sores, or mouth infections or from difficulty swallowing due to a tumor. Severe pain, nausea, constipation, or changes in taste due to illness or treatment can also affect appetite. More commonly, however, loss of appetite occurs because of a serious disease or condition, such as cancer or an infection. The disease can cause protein and fat to break down in the body. These changes often cause significant weight loss (cachexia) in a dying person.

In the uncommon event that a person appears to be distressed by loss of appetite, family members and friends can try offering small portions of soft foods (such as eggs, gelatin, or sherbet) or of the person's favorite foods on a flexible schedule. Some drugs can be used to increase appetite, including corticosteroids, hormonelike drugs (progestins and androgens), drugs that speed up digestion (metoclopramide), and a drug related to marijuana (dronabinol). These drugs can take weeks to take effect. In rare circumstances, the person fares better with food given by feeding tubes or intravenously.

Family members and friends often do not understand that loss of appetite near death is nearly universal, and dying people are rarely hungry. Near the end of life, loss of appetite does not distress the dying person, although it may greatly concern loved ones. Coaxed or forced nutrition rarely increases a dying person's weight and may cause the person greater distress. Artificial feeding and hydration through tubes or intravenously usually does not prolong life and often worsens symptoms such as shortness of breath. Thirst is much more successfully managed by allowing sips of liquids or by keeping the dying person's mouth moist with liquids or sprays intended for this purpose or even with a moistened cloth.

Mouth problems come from ulcers due to anticancer drugs, fungal infection, dryness due to radiation treatment and dehydration, and poor hygiene. Treatment includes taking frequent sips of water or other liquids, brushing the teeth twice a day, and rinsing the mouth with an anesthetic solution. Antifungal drugs such as nystatin, used as a mouth rinse or dissolving lozenge, or fluconazole, taken as a pill, are effective against fungal infection.

Constipation may seem trivial compared with other symptoms, but it can greatly compromise comfort. Constipation occurs because a seriously ill person nearing the end of life is typically inactive or immobile, is dehydrated, eats little dietary fiber, and takes constipating drugs, especially opioid analgesics. Other contributing factors are an inability to get out of bed to reach a toilet, confusion, depression, and such disorders as spinal cord compression, intestinal blockage, and high calcium levels in the blood.

Constipation can sometimes be managed by remedying the underlying cause, which may include taking periodic walks, sucking on ice chips, and using a bedside commode. Laxatives taken by mouth or as suppositories are useful, as are enemas. Increased fiber intake, which is usually helpful in treating constipation in healthy, active people, should be avoided in people who are nearing the end of life, because their reduced fluid intake can cause the fiber to be useless or even harmful.

Diarrhea is much less common than constipation. Diarrhea is often caused by drugs, including anticancer drugs, antibiotics, and laxatives; by diseases such as some cancers; and by surgery on the stomach or intestine that speeds up the movement of materials in the digestive tract and decreases their absorption. Diarrhea can also be a sign of constipation when hard stool stimulates the large intestine to push liquid stool around it. Treatment is usually with antidiarrhea drugs, such as loperamide and diphenoxylate.

Inflammation of the Anus

The anus sometimes becomes irritated and inflamed because of constipation, diarrhea, changes in the skin and the lining of the anus that may occur if weight is lost, and increased pressure on the skin during long periods without moving around. Zinc oxide and corticosteroid creams may relieve irritation and inflammation around the anus.

Pressure Sores

Pressure sores (bedsores) occur because dying people usually lie in one position for long periods without moving. Pressure sores are easier to prevent than to treat. Prevention involves changing positions frequently and cushioning areas prone to pressure sores, such as the heels, ankles, hips, and lower back. Treatment involves reducing pressure, changing positions frequently, applying dressings, removing dead tissue, and maintaining proper nutrition.

Itching

Itching affects some people with life-threatening chronic diseases because of incontinence, sweating, poor hygiene, dehydration, dry skin, dermatitis and other skin conditions, and liver and kidney failure. Often the cause is unknown. Treatment involves correcting the underlying cause combined with applying moisturizing and corticosteroid creams and taking drugs that decrease itching (such as antihistamines) as needed.

Fatigue

Fatigue is extremely common and often is due to many factors, including pain, sleep disturbance, low red blood cell count (anemia) or low blood oxygen level, organ failure, drugs, infection, and depression.

Often it is best to simply let a person rest as much as he needs to. Sometimes, other treatment seems appropriate and may involve treating the underlying cause with analgesics, sedatives, antibiotics, antidepressants, oxygen, or a blood transfusion or erythropoietin (a drug used to increase the red blood cell count). Occasionally, psychostimulants such as methylphenidate or dextroamphetamine are useful.

Anxiety

Anxiety is common in people with life-threatening chronic diseases. It may be a normal response to physical symptoms or to the prospect of death. Pain and shortness of breath are common triggers, as is the appearance of a new or unfamiliar symptom. Some drugs can cause anxiety. Anxiety is also caused by conflicts with family members, recognition of one's own mortality and limitations, fear of abandonment, regret over past actions, and financial concerns. Anxiety is a problem when it causes sleeplessness or other disturbing symptoms and when it overwhelms people's thoughts or limits their ability to do the things they would like to do.

Anxiety can be relieved by emotional support and reassurance from family members and by health care practitioners, who can patiently explain symptoms, treatments, and choices. Music, prayer, or other relaxing activities may also help. Antianxiety drugs, including benzodiazepines and antidepressants, are effective when other measures fail.

Depression

Depression affects many people with life-threatening chronic diseases and needs to be distinguished from the sadness a person might normally feel. Although depression near the end of life may be common, it is never considered normal. Depression near the end of life is just as burdensome as at any other time of life and can rob the dying person of a sense of purpose and the energy and interest needed to communicate with and enjoy the company of family members and friends. Depression should be identified and treated at the end of life as at any other time.

Depression may be worse for those with uncontrolled pain or nausea, little family or social support, and financial or other stresses. A primary symptom of depression is sleeplessness, which in turn may worsen pain, nausea, and fatigue. Depression also affects appetite.

Alleviating pain and nausea often relieves depression, as does allowing people as much control as possible over treatment decisions and over their surroundings. Spiritual counseling or other empathic support may also help. Sometimes, antidepressant drugs are needed and can be highly effective in treating depression in people who are nearing the end of life. For those for whom death is anticipated sooner than the time required for traditional antidepressants to take effect, a more rapid elevation in mood can be achieved with psychostimulants, such as methylphenidate or dextroamphetamine.

Confusion

Sudden confusion (delirium) is especially common at the end of life. Drugs used to treat pain, shortness of breath, anxiety, and depression contribute to confusion, as do fever, dehydration, and sleep disturbance. For many people, however, confusion reflects changes in the brain and body that are a natural part of dying. Confusion is often more a problem for family members than for the dying person.

Treatment involves keeping the person safe, usually by having someone with him as often as possible. Drugs that cause confusion should be stopped or the dose decreased whenever possible. Treating fever and dehydration and creating a calm, quiet environment with few distractions may help. Antipsychotic drugs, such as haloperidol, often help reduce fear or hallucinations in people nearing the end of life. If the person is agitated and restless, sedatives such as benzodiazepines may also be helpful.