Going home to die.

• Author: Kaplan, Karen Orloff

"... The decision to care for a dying loved one at home can ensure that the patient is well cared for and can die with dignity, in a manner that reflects the way he or she lived."

The act of completing an advance directive (the general term for living wills and durable powers of attorney for health care) raises thoughts about where and how one wants to die. Many people who opt to refuse life support also rather would refuse the entire experience of dying in an alien, depersonalized medical facility.

Going home to die may be a growing trend, at least for patients who are conscious and interactive. As sociologist Andrea Sankar notes in Dying at Home: A Family Guide for Caregiving, interest in home care has been spurred by five factors: patients' and families' desire to retain control over care; the spread of the hospice movement; a growing awareness of the limitations of medicine's abilities; advances in home-based care and technology; and reduced Medicare payments for hospital care when dying patients are not receiving active (i.e., life-prolonging) treatment.

Caring for people at home can make them feel loved and allow them to stay connected to the things that enrich their lives. They may continue working, see loved ones, and enjoy social events. They can take leave of the world at their own pace.

According to William Lamers, a leader in the hospice movement, "the experience may also be invaluable to family and other survivors. Caring for a dying person can be an expression of love and a final gift to the person. Involvement in the dying process often helps the survivors cope better with their grief."

Home care of a dying patient is managed by a home health agency or a hospice program. In either case, family members or other loved ones act as the primary caregivers.

Broadly speaking, the two types of agencies differ in their philosophies and client groups. Hospice care is exclusively for dying people. It therefore brings expertise to helping patients and their families face issues specific to death and dying. To qualify for most hospice programs, patients must have a diagnosis of six months or less to live and must agree to forgo life-prolonging treatments.

Home health agencies, in contrast, accept a wider range of patients, not all of whom are dying, and generally offer a wider range of treatments, including life support. Like hospice programs, though, home health agencies tailor their care plans to the patient's wishes. "The key to successful care at home is the patient's involvement in the care plan," explains Robin Brenner, general manager of Protocare, a high-tech home care agency in New York State. Thus, a dying person still may refuse life support with a home health agency.

At heart, what these agencies have in common may be more important than how they differ. Both approach the provision of care holistically. "In contrast to the hospital, where death is seen as a medical event, hospice defines death socially," indicates Sankar. It "is concerned with the dying person as a whole person - with social, emotional and psychological needs - meaningfully connected to other people." This vision also can be found among home...