Choosing hospice

Hospice care offers end-of-life comfort and support; it works best if you think about it ahead of time.

Most of us have an opinion about what constitutes good care for ourselves and our loved ones at the end of life—and, despite American cultural diversity, research shows that most of us have similar opinions. We want to be as independent as possible and to have our values and preferences respected. According to a report published in 2003 by the Hastings Center, a bioethics research institute ("Access to Hospice Care: Expanding Boundaries, Overcoming Barriers"), most Americans would like to die peacefully at home, surrounded by people they care about. We also share common fears of suffering in pain, losing control, being a burden to others, and being abandoned.

In the 1970s, when a rising number of terminally ill people were dying alone in hospitals, these hopes and fears gave impetus to the adoption of hospice care in the United States. The philosophy of hospice is that everyone has the right to die free of pain and with dignity, and that families should be supported in helping to make this possible. Hospice programs are equipped to provide quality care to the dying and support for their families and caregivers. Their services can be especially important to women, who shoulder most of the burden of caregiving and often must help an aging parent or other relative make arrangements.

The hospice movement has not grown as fast as one might expect, given the seemingly universal appeal of its philosophy. The Hastings Center analysis cited several reasons why many of us still die without the medical, nursing, social, and spiritual services that hospice can provide. Some of the barriers are overt, such as the laws and policies that affect financing and delivery of hospice care. Others are subtle, such as the attitudes of both patients and doctors toward death and dying. A major impediment is lack of information.

Here we offer an introduction to the basics of hospice and a physician's perspective on starting the conversation about end-of-life care (see "A doctor talks about hospice").

The hospice care approach

When a cure is no longer possible, hospice care can enable patients to maintain a good quality of life and to die with dignity. Symptoms are managed so that the dying person can spend his or her last days alert and comfortable, surrounded by loved ones. This kind of care is called "palliative," meaning "comfort giving," as opposed to curative. It is directed at treating symptoms like physical pain, nausea, mental confusion, and breathing difficulties.

The distinctive feature of hospice care is the coordination of medical, psychological, and spiritual support for both dying persons and their families (see "What hospice programs can do," above). By law, hospice programs must also provide bereavement counseling for up to a year. The Medicare hospice benefit, which in many respects sets a national standard, covers up to 13 months of bereavement counseling.

Most hospice programs are run by independent nonprofit organizations. Some are affiliated with hospitals, nursing homes, or home health agencies, and some are for-profit institutions. Hospice care is available in hospitals, skilled nursing facilities, and specialized hospice centers, but most of it is provided in the home, with a family member as the main caregiver.

Like many other forms of medical care, hospice takes a team approach. But unlike hospital intensive care or trauma units, hospice teams can offer a range of care. The team may include not only doctors and nurses, but also members of the clergy; social workers; psychologists; speech, physical, and occupational therapists; home health aides; and trained volunteers, as well as family and friends.

When does hospice care begin?

Most health insurers and hospices have adopted the Medicare eligibility rules, which require certification from a physician that the patient will not benefit from further curative treatment and has a life expectancy of no more than six months if the illness runs its normal course.

The six-month rule, now fairly standard, works well enough for cancer, which usually has a distinct terminal phase. The rule is harder to apply, and hospice care more difficult to arrange, when the course of the illness is less predictable and life expectancy is uncertain—as in organ failure, general frailty, or Alzheimer's disease.

Nevertheless, it's important to bring up the possibility for the sake of both the patient and the family. Everyone needs time to discuss the matter and perhaps consult physicians, insurers, and others before deciding whether, when, and where to arrange for hospice care. Some physicians will suggest hospice care relatively early on, but others delay—sometimes until it's too late to get the full benefits (see "A doctor talks about hospice"). So families and patients may need to raise the issue themselves and seek information on their own.

End-of-life matters are too weighty to put off until death is imminent. But, according to the National Hospice and Palliative Care Organization, the average length of hospice care in 2003 was barely three weeks. Only 1 hospice patient in 14 received care for 6 months or longer, and more than a third received it for a week or less. These figures are significant, because short-term care means the patient and family have less time to prepare for death.

Who pays for hospice?

Hospice care is covered by most private health insurers, health maintenance organizations (HMOs), and other managed care plans—including Blue Cross, Blue Choice HMO, the Department of Veterans Affairs, Medicare, and Medicaid. Many hospice programs will provide care even for patients who have insufficient or no insurance. Home-based hospice care usually costs less than hospital or nursing care, of course, because it requires less professional help and little high-tech equipment.

In a Medicare-certified hospice program—and most hospice programs are Medicare-certified—Medicare pays for almost everything. The only exceptions are small co-payments for medications and some respite care. Medicare covers almost all of the 80% of hospice patients who are 65 or over. Younger patients may also be eligible if they meet certain conditions—for example, if they've qualified for Social Security disability benefits for at least two years, have amyotrophic lateral sclerosis (ALS), have had a kidney transplant, or need regular dialysis.

On the understanding that terminal illnesses aren't entirely predictable, Medicare continues to pay benefits even if the patient lives longer than six months. If the illness goes into remission or improves, a person can be discharged and return to hospice at a later time. Patients can also receive standard Medicare coverage if they halt hospice care and resume regular medical treatment.

Why choose hospice care?

There are many reasons for choosing hospice care. It allows people to end their lives as comfortably as possible, surrounded by family and friends. Home-based hospice gives patients and their families a greater sense of control than a hospital allows. And hospice places a much greater emphasis on the spiritual and emotional aspects of dying. That's why it has become the choice of increasing numbers of the dying and their families.