Going home to die

USA Today (Society for the Advancement of Education), Jan, 1996 by Karen Orloff Kaplan

"... 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 health providers.

In addition, both types of agencies consider the entire family as the unit of care and attend to the family's social, emotional, and psychological needs as well as the patient's. They offer an interdisciplinary team of health professionals, counselors, aids, and volunteers to meet the spectrum of the family's practical and psychological needs. Apart from other considerations, family caregivers need support so they can continue devoting their energies to the patient.

Successful home care

A successful home care plan requires three resources: a willing patient, preferably with a loved one to be the primary caregiver; a professional care agency to assist in managing the case, train and educate family caregiver(s), and provide skilled care and backup; and an insurance plan or other means of payment that covers enough of the care to make it affordable.

In addition, notes Brenner, "the physician is a key player. He needs to be supportive. He also needs to be available to the patient at home." If the patient's regular doctor is not supportive of the choice of home care, the patient may want to consider finding a new physician.

The doctor or a hospital discharge planner can help to locate appropriate care agencies, which work with the patient and family caregivers to help them identify helpful resources and explore what items will be needed in the residence to provide for a home death. The agency then works with the patient and the family, explains Brenner. "We look at the diagnosis and clinical needs, including the environment the patient is going to. We anticipate the diagnosis on its continuum, and look at insurance." An appropriate plan of care then is created.

Even when family members support the patient's wish to die at home, they may wonder whether this is legal. Ann Fade, associate executive director for legal services, Choice In Dying, points out that, "as death approaches, loved ones may fear that by keeping the patient at home they are illegally depriving him or her of medical treatment. But the law clearly states that a competent adult can refuse any medical care, even if that care is life-sustaining. This includes the right to refuse hospitalization. Therefore, as long as the patient, while competent, clearly expressed the desire to die at home, there can be no legal liability for abiding by that wish."