Symptoms During a Fatal Illness
Many fatal illnesses produce similar symptoms, including pain, shortness of breath, digestive problems, incontinence, skin breakdown, and fatigue. Depression, anxiety, confusion, unconsciousness, and disability may also occur.
Pain
Most people fear pain as they confront dying. However, pain can usually be controlled while allowing the person to remain awake, involved in the world, and comfortable.
Radiation can control certain types of cancer pain by reducing tumor size and growth. Physical therapy or analgesics, such as acetaminophen and aspirin, are used to control mild pain. For some people, hypnosis or biofeedback (see Section 6, Chapter 78)--approaches that have no notable adverse effects--effectively relieves pain. However, opioids such as codeine and morphine are often needed (see Section 6, Chapter 78). Opioids given by mouth can relieve pain effectively for many hours, and stronger opioids can be given by skin patch, injection, or continuous infusion into a vein. Drug addiction should not be a concern, and adequate medication should be given early, rather than held off until the pain is intolerable. There is no usual dose; some people need small doses, whereas others need much larger doses.
Shortness of Breath
The sensation of struggling to breathe is one of the worst ways to live or die; it is also usually controllable. Various methods can usually ease breathing--for example, relieving fluid buildup, changing the person's position, providing supplemental oxygen, or shrinking a tumor that obstructs the airways with radiation or corticosteroids. Opioids may help people who have mild, persistent shortness of breath breathe more easily, even if they do not have pain. Taking opioids at bedtime can promote comfortable sleep by preventing the person from waking up frequently, fighting to breathe.
When these treatments are not effective, most doctors who work in hospices agree that a person suffering in this way should be given an opioid in a dose that is high enough to relieve the perception of shortness of breath, even if the person might become unconscious. A person who wants to avoid shortness of breath 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 Problems
Digestive problems, including a dry mouth, nausea, constipation, an intestinal obstruction, and loss of appetite, are common in people who are very sick. Some of these problems are caused by the disease. Others, such as constipation, can be side effects of drugs.
A dry mouth can be relieved with wet mouth swabs or hard candy. Various commercially available products can soothe chapped lips. To prevent dental problems, a person should brush the teeth or use mouth sponges frequently to clean the teeth, gums, inside of the cheeks, and tongue.
Nausea and vomiting may be caused by drugs, an intestinal obstruction, or advanced disease. A doctor may have to change drugs or prescribe an antiemetic (antinausea) drug. Nausea caused by an intestinal obstruction may also be treated with antiemetics, and other comfort measures can be taken.
Constipation is very uncomfortable. A limited intake of food, a lack of physical activity, and certain drugs cause the intestine to be sluggish. Abdominal cramping may occur. A regimen of stool softeners, laxatives, and enemas may be needed to relieve constipation, especially when caused by opioids. Relief of constipation is usually beneficial, even at late stages of a disease.
An intestinal obstruction may require surgery. However, depending on the person's overall condition, likely life expectancy, and reason for the obstruction, the use of drugs to paralyze the intestine and decrease stomach secretions, sometimes with nasogastric suction to keep the stomach clear, may be preferable. Opioids are useful for pain relief.
Difficulty swallowing (dysphagia) occurs in some people, especially after a stroke, with advanced dementia, or from an obstruction with cancer. Sometimes the person can regain the ability to swallow by maintaining a certain body position while eating or by choosing foods that are easy to swallow. If the problem cannot be resolved, a decision must be made as to whether to allow tube feeding.
Loss of appetite eventually occurs in most people who are dying. A decrease in appetite is natural, does not cause additional physical problems, and probably plays a role in dying comfortably, although it may distress family members. People who are dying will not keep their strength up by forcing themselves to eat, but they may enjoy eating small amounts of favorite home-cooked dishes.
If death is not expected to occur within hours or days, nutrition or hydration--given intravenously or via a tube inserted through the nose into the stomach--may be tried for a limited time to see if it improves the person's comfort, mental clarity, or energy. Nonetheless, many people opt not to undergo such feedings. Either way, the dying person and family members should have an explicit agreement with the doctor about what they are trying to accomplish with these measures and when the measures should be stopped if they are not helping.
Reduced food or liquid intake does not cause suffering. In fact, as the heart and kidneys fail, a normal intake of liquids often causes shortness of breath, because fluid accumulates in the lungs. A reduced food and liquid intake may lessen the need for suctioning because of less fluid in the throat and may reduce pain in people with cancer because of reduced swelling around tumors. It may even help the body release larger amounts of the body's natural pain-relieving chemicals (endorphins). Therefore, people who are dying should not be forced to eat or drink, especially if doing so requires restraints, intravenous tubes, or hospitalization.
Incontinence
Many dying people lose the ability to control bowel and bladder function (incontinence), attributable either to the disease or to general weakness. Disposable diapers and attentive hygiene measures usually address the problem.
Bedsores
Dying people are susceptible to bedsores, which cause discomfort and can lead to infections. Those who move very little, are confined to bed, 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 protect the skin, and reddened or broken skin should be reported to the doctor promptly (see Section 18, Chapter 205). Frequent position changes decrease the likelihood of bedsores.
Fatigue
Most fatal illnesses produce 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 drugs help.
Depression and Anxiety
Feeling sad when contemplating the end of life is a natural response, but this sadness is not depression. A person who is depressed may lack interest in what is going on, see only the bleak side of life, or feel no emotions (see Section 7, Chapter 101). A dying person and his family should talk to the doctor about such feelings so that depression can be diagnosed and treated. Treatment, usually combining drugs and counseling, is often effective, even in the last weeks of life, by improving 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 (see Section 7, Chapter 100). Feeling uninformed or overwhelmed can cause anxiety, which may be relieved by asking caregivers for more information or help. A person who typically feels anxiety during periods of stress may be more likely to feel anxiety when dying. Strategies that have helped the person in the past--including reassurance, drugs, and channeling worry into productive endeavors--will probably help him when dying. A dying person troubled by anxiety should get help from counselors and may need antianxiety drugs.
Confusion and Unconsciousness
People who are very sick become confused easily. Confusion may be precipitated by a drug, a minor infection, or even a change in living arrangements. Reassurance and reorientation may relieve the confusion, but the doctor should be notified so that treatable causes can be sought. A person who is very confused may need to be mildly sedated or constantly attended by a caregiver.
A dying person who is confused will not understand dying. 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 such episodes but should not expect them.
Almost half of the people who are dying 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 good-byes 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.
Disability
Progressive disability often accompanies fatal illnesses. People may gradually become unable to tend to a house or an apartment, prepare food, handle financial matters, walk, or care for themselves. Most people who are dying need help in their last weeks. Such disability should be anticipated, perhaps by choosing housing that is accessible to wheelchairs and close to family caregivers. Services such as occupational or physical therapy and home health nursing may help a person remain at home, even when the disability progresses.
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