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The overwhelming majority of deaths in the United States occur among older adults, typically from chronic diseases that have worsened over time. Older adults often have multiple conditions and often must come to depend more and more on others, especially family members, to take care of many of their needs. Many times, death becomes a drawn out process that requires older adults, their families, and their doctors to make difficult decisions about using or discontinuing treatments that prolong life.

Most Americans spend the majority of their final months at home. However, older adults usually pass away in the hospital or nursing home, although in the United States, this varies from region to region. For example, only 35% of adult deaths in Portland, Oregon, happen in hospitals, compared with 80% in New York City. These differences are partly related to differences in the regional supply of hospital beds and the availability of community support for the dying. Other factors are social and medical differences. For example, people with low incomes and women tend to have a greater need for institutional care or paid caregivers during the last months of life. Similarly, older adults who suffer from mental impairment are much more likely to spend their last days in a nursing home.

• Palliative Care and Hospice
• Hospice care
• Pain Assessment and Treatment of People with Mental Impairment
• Recognizing pain
• Treatment
• Palliative Care for Symptoms Other than Pain
• Constipation
• Nausea and vomiting
• Diarrhea
• Loss of appetite, weight loss, and wasting
• Delirium
• Depression
• Labored breathing
• Cough

The goal of palliative care is to prevent, relieve, reduce, or soothe the symptoms of diseases or disorders. Palliative care does not try to cure disease. It is concerned with the emotional, spiritual, and practical needs of the affected person and those close to them. Palliative care is important for people who are thought to be at imminent risk of dying, those who are extremely ill, or those who are living with serious complications at the final stages of chronic diseases.

Palliative care focuses on managing symptoms, providing comfort, helping the patient complete "life business," healing relationships, and helping the family and friends who are grieving.

Hospice care provides palliative and supporting care for terminally ill people and their families at the end of life. The word "hospice" also refers to a facility that provides hospice care, such as a specialized center. The hospice can be located within a separate building or can be housed within a hospital or nursing home. Hospice care can also be provided at home.

• Care provided by a team of medical and other professionals (eg, doctor, nurse, social worker, chaplain, aides, volunteers, music therapist)
• Case management by a hospice nurse
• Access to a hospice physician
• Drugs at no cost if they are related to the terminal diagnosis and are palliative, as determined by the hospice plan of care
• Tests and other treatments at no cost if they are related to the terminal diagnosis and are palliative, as determined by the hospice plan of care
• Durable medical equipment
• Bereavement services for 13 months after a death

Hospice benefits pay for home care, inpatient care, continuous care, and respite care. These benefits are supported by Medicare, Medicaid, and most commercial insurances and are used in more than 3000 hospice services in the United States. Most of these hospices are nonprofit and are dedicated to providing complete palliative care for patients with all types of terminal illnesses, and for their families. (See also Insurance, Financing, and Costs of Health Care.)

Most hospice care is provided at home or in a nursing home, although patients may need to be hospitalized for management of sudden problems. Access to hospice care is based on two conditions:

1. A physician must certify that he or she believes that the patient has a life expectancy of 6 months or less if the disease(s) runs its expected course.
2. The patient (or proxy) must elect hospice care. In doing so, he or she agrees that the care plan with respect to the terminal illness will be managed by the hospice program.

The terminally ill person must be recertified on a regular basis to ensure that the above conditions are still being met. If the physician cannot state that life expectancy is still anticipated to be 6 months or less, then the person must be discharged from hospice. A person may withdraw from hospice at any time.

If a patient is referred to hospice, his or her doctor must also decide whether to remain the physician of record, or to refer the patient to the hospice medical director. If the referring physician remains the physician of record, he or she continues to direct the care of the patient and becomes part of the hospice team. In this case, the referring physician must coordinate treatment decisions related to the terminal illness with the case manager (eg, primary nurse).

A key goal of palliative care is to relieve pain and provide comfort at the end of life. Pain can be managed in different ways depending on how severe it is and what is causing it (see Pain Management). However, evaluating pain is complicated in people who have mental impairment, eg, if they are unable to think or communicate clearly. This type of circumstance makes recognizing and adequately treating pain challenging.

People with mental impairment are often unable to communicate when they are in pain or to ask for pain-relieving drugs. In addition, they may be unable to safely operate a hand-held pump or other system that allows them to self-administer pain medications. Doctors may also be hesitant to prescribe a sufficient dose of pain medication for a variety of reasons. They are often concerned that too much pain medication might worsen the patient’s mental or medical status.

Many mentally impaired people can identify the location of the pain and its severity. However, some people, such as patients with severe dementia, may not be able to communicate at all. In these cases, another way to assess pain is needed. Facial expressions (eg, grimacing, frowning, etc) and body language (eg, tensing, restlessness, and agitation) are usually the most important. In studies of mentally aware people, these nonverbal behaviors matched up well with self-reported pain during recovery from surgery. Of course, verbal cues such as groans, moans, or cries are also important.

Treating pain adequately is especially important in mentally impaired people. Some research evidence suggests that pain may actually be aggravated in the presence of mental difficulties. Untreated pain can result in the patient becoming agitated or showing disruptive behavior. Untreated pain can also set off or worsen an episode of confusion or delirium.

In mentally impaired people, pain medication should be increased in small doses until either the signs of pain (eg, verbal or nonverbal cues) disappear or side effects appear. This approach is particularly useful in the treatment of patients who are agitated after surgery because of untreated or under-treated pain. The risk of under-treating severe pain is usually higher, from both a medical and ethical perspective, than the risk of worsening delirium with too much medication.

Terminal conditions (eg, cancer or heart failure) can be associated with many types of symptoms other than pain. These symptoms can be caused by the disease itself, or by medications used during treatment (eg, cancer chemotherapy). Common symptoms include constipation, nausea and vomiting, diarrhea, loss of appetite, weight loss, wasting, delirium, depression, labored breathing, or coughing.

Constipation is one of the most common and distressing symptoms in terminally ill people. Constipation is a universal side effect of narcotic drugs (eg, codeine or morphine) that are often used to control pain. The constipation caused by these medications is worsened when patients are unable to move around much or don’t drink much fluid, both of which are commonly seen in most serious, life-threatening and end-stage chronic illnesses. Although side effects of narcotics usually lessen over time, constipation tends to persist. Therefore, people who need to take narcotics for a relatively long time should also take a stool softener (eg, docusate sodium) and a drug to stimulate the bowel (eg, senna, bisacodyl), unless diarrhea becomes a problem. If these treatments do not result in adequate bowel movements, then other laxatives can be added (eg, an osmotic laxative). People should coordinate their regimen of bowel medications with their health care provider.

If a patient has not had a bowel movement for four or more days, an enema should be given. People with constipation should also be evaluated for bowel obstruction or fecal impaction (too much stool accumulates in the colon and blocks it). Fecal impaction can be life threatening and the blockage needs to be removed manually or with enemas. Laxative therapy can then be started.

Nausea and vomiting is seen in 40%-70% of people with advanced cancer. Because nausea and vomiting can be caused by the cancer or the cancer treatment, it is important to first identify the cause. Vomiting can be triggered by problems affecting the gut, brain, or nerves. Treatment focuses on the area most likely to be the problem.

Diarrhea is not common in terminally ill people, affecting less than 10% of cancer patients admitted to hospice. However, watery diarrhea can actually be a sign of fecal impaction, particularly in patients on narcotics who have limited mobility. Fecal impaction may be life threatening and requires intensive treatment (see Constipation), so watery diarrhea should be immediately reported to your doctor or other health care provider.

Identifying the cause of diarrhea is important to be able to control it. One common cause of diarrhea during palliative care is excessive laxative therapy. In this case, laxatives can be stopped temporarily and then started again at a lower dose. Radiation therapy involving the lower half of the body (abdomen and pelvis) can also cause diarrhea. In this situation, diarrhea is usually most severe during the second or third week of radiation treatment. This diarrhea can usually be controlled with medication. Diarrhea can also be caused by other bowel or nerve problems or by infection, each of which would prompt a specific treatment plan.

Loss of appetite is almost a universal symptom of people with serious and life-threatening illness. Weight loss and wasting are also very common. In general, terminally ill people should be encouraged to eat whatever they find most appealing, without regard to dietary restrictions. However, if someone is in the process of dying and does not want to eat, the loss of appetite does not need to be treated. Having a dry mouth can be soothed by ice chips, popsicles, moist compresses, or artificial saliva. Lemon glycerin swabs should not be used, because they can irritate dry and cracked lips and gums. Steroids are one alternative that can be used to improve appetite, cause weight gain (primarily fat), and improve quality of life in some people who are not eating. However, steroids can have many side effects and they have not been shown to prolong life, improve function, or improve the ability to tolerate cancer treatments.

Delirium, agitation, and confusion are common in terminally ill older adults. These symptoms are distressing to both patients and family members. Causes that are possibly reversible (eg, infection, impaction, uncontrolled pain, urinary retention, low blood oxygen) should be identified and treated. Some drugs (eg, antipsychotics) in low doses are effective treatments for delirium. Certain tranquilizers can also calm agitated patients with delerium. However, other drugs used for anxiety are often associated with agitation and a worsening of delirium. (See also Delirium.)

Changes in mood, loss of interest, and thoughts of suicide may be signs of depression. Depression is not always recognized and is under-treated in both older adults and terminally ill people. Clinical depression is not a normal part of aging and should not be considered a normal consequence of terminal illness. Serious symptoms of depression, especially thoughts of suicide, should be openly discussed with family members and health care providers. Treatments are available that can significantly help with depression, including medication and consultation with mental health professionals. Often, people change their minds about suicide after discussion and treatment. (See also Depression and Other Mood Disorders.)

Labored breathing and feeling breathless are some of the most distressing symptoms of terminally ill people. Breathlessness can have many causes (eg, anxiety, airway blockage or obstruction, airway spasm, too little oxygen in the blood, and pneumonia). The ideal therapy is treatment of the specific cause. However, treatment to improve symptoms and relieve distress should begin immediately, while the underlying cause is being identified.

A number of treatments can help, even when the specific cause is unknown or does not respond to treatment. Oxygen is usually an important part of any treatment plan. Simply moving cool air across the face (eg, from fans or an open window) can stimulate some of the nerves that control the sensation of breathlessness. The most commonly used drugs for general treatment of breathlessness are narcotics. Some tranquilizers can also help with mild breathlessness or with control of the anxiety associated with breathlessness. However, all these drugs need to be administered cautiously, because they can have side effects and because they do not address the underlying illness. In addition, there is no research evidence that proves the benefit of these drugs.

Coughing is very common, seen in 29%-83% of people receiving palliative care. Coughing can be caused by the lungs or airways producing too much fluid (eg, blood, mucus), breathing in foreign material, or irritating the airway. Additionally, patients with conditions that affect the throat may be unable to swallow saliva, and when the saliva trickles down the wind pipe (or trachea), it causes coughing.

Coughing that doesn’t result in difficulty breathing may not need to be treated, except to relieve symptoms and improve comfort. However, any underlying causes of cough should be identified and treated, if possible. If the underlying cause cannot be treated effectively, cough suppressants may be used.

Narcotics are strong cough suppressants. They can be used to treat coughing that has not responded to other therapy. Codeine and dihydrocodeine, usually in the form of syrups, are often the first choices. Methadone syrup may also be helpful, and is taken as a single dose because it lasts longer. Dextromethorphan is a weaker drug that is found in most over-the-counter cough suppressants. It acts similarly to narcotic cough suppressants, but does not make you sleepy or groggy. Coughs due to an irritated throat may be helped by mists of a local anesthetic.