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Hospice Care

by Elizabeth L. Cobbs, MD, Karen Blackstone, MD; Joanne Lynn, MD, MA, MS

  • Hospice programs focus on symptom relief, comfort care, and emotional support for the patient and family.

  • Hospice programs do not emphasize diagnostic testing, finding a cure, or prolonging life.

Hospice is a concept and a program of care that is specifically designed to minimize suffering for dying people and their family members. In the United States, hospice is the only widely available comprehensive program to support very sick people at home. Hospice programs forgo most diagnostic testing and life-prolonging treatments in favor of symptom relief. They also educate dying people and family members about appropriate care and comfort care. Although hospice programs do not emphasize prolonging life, good hospice care may well prolong life a little bit, perhaps by avoiding the serious potential side effects of surgery and aggressive drug treatments that people might otherwise receive.

In typical hospice care, a family member, a close friend, or both help make decisions for the seriously ill person when he or she is no longer competent or capable. The hospice staff usually visits the person as much as the person needs as often as daily, and someone is available on call around the clock. Hospice personnel are specially trained to help manage symptoms and provide emotional and spiritual support and hands-on health care.

Hospice always involves different types of professionals, such as doctors, nurses, social workers, attendants (for example, home health aides), and, if needed, speech, physical, and occupational therapists. Pharmacists, nutritionists, and other therapists may also be involved.

Hospice program personnel care for people at home or in nursing homes. Although hospice program personnel do not usually care for people in hospitals and rehabilitation centers, many hospitals are establishing care programs that treat symptoms fully and help with decision making (palliative care services) to address the same care issues.

Hospice programs differ from each other in the services they readily provide and in treatments and devices they support and use. Whether hospice care serves a particular person and family best depends on their needs and wishes, on financial considerations, and on the skills and capacity of the local programs.

Hospice care can provide most necessary medical treatments, and doctors stay involved. Nurses ordinarily oversee the general plan of care, including drug use, oxygen therapy, and intravenous lines or other special equipment. Social workers, chaplains, and trained volunteers help address interpersonal, spiritual, and financial issues. Bereavement counselors provide support and insight during the grieving process. Hospice plans of care help family members prepare for the challenges of facing the death of a loved one and dealing with the situation at the time of death, including their roles and how to obtain needed help.

Most people ill enough to require hospice also require some assistance with daily activities (for example, dressing, bathing, and preparing food), and some may be completely dependent. Family members and friends often provide this care, and the hospice or the family can provide additional paid help from home health aides.

Medicare or insurance typically pays for hospice services, but usually only after a doctor certifies that the person has a fatal disorder and is expected to live less than 6 months. People are still covered by their regular medical insurance for conditions unrelated to the hospice diagnosis.

Doctors may be reluctant to use hospice because a treatable condition outside of the hospice program’s capabilities could develop. However, many treatable conditions are within the scope of hospice care, and people can leave hospice at any time to try a promising treatment and re-enroll later. Therefore, this reluctance is not justified.