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In January 1995, a physician diagnosed 50-year-old Cliff Dailey of Atlanta with a rare form of cancer. His doctor offered massive doses of chemotherapy as his only hope. Dailey's severe heart problems, though, lowered his already meager chances of survival to less than 10 percent.

"We knew going into this that there wasn't a great deal that medicine could do," says his widow, Rita. "But it was the only thing we had."

Finally, Dailey's doctor determined that continued chemotherapy would lead to a quicker death, and he recommended two different hospice programs.

Rita Dailey recalls that a representative of one of the hospices met her at the door. "She said, 'We'll help you all we can, and when he's dead, you call us. We'll pick him up.' "

In America's death-denying culture, hospice is struggling to overcome the perception that it is a choice to quit. On the contrary, its advocates assert, hospice is an interdisciplinary program that enables the terminally ill to live to their fullest with the time they have left.

Though the number of hospice programs has grown steadily—17 percent annually during the past five years—Yale University Medical School professor Diane Komp believes that a bottom-line mentality, fostered largely by managed care and Medicare, has "hijacked" the original hospice vision of the movement's Christian founder, Cicely Saunders. Saunders, a London physician, placed the spiritual dimension at the core of an integrated community team of lay volunteers and health-care professionals at Saint Christopher's hospice (CT, Dec. 17, 1990, p. 22).

"The idea that you can fund something by the government and duplicate what happened in London totally underestimates what Saint Christopher's hospice was all about," says Komp.

"The community came together to solve a problem in health care that the health profession, left to our own devices, wasn't doing a good job with," says Komp, who serves at the Connecticut Hospice, Inc. in Branford, established in 1974 with the help of Saunders as the first hospice in the United States. "Communities of laypeople, doctors, nurses, clergy—even funeral directors in the large communities—came together with a common vision of doing a better job."

The more than 3,000 hospice programs in the United States serve 450,000 patients, according to the most recent statistics of the National Hospice Organization (NHO), an advocacy and membership group based in Washington, D.C.

Hospice researcher Joanne Lynn says no conclusive research exists to determine just how well hospice is doing its job and what effect managed care arrangements have had.

"The NHO puts out a survey in which they measure satisfaction in families, so you know that on the whole there is sort of a glow about things," says Lynn, director of the Center to Improve Care of the Dying at George Washington University in Washington, D.C. "But you wouldn't know if lots of people were getting bad or inadequate treatment, because you're relying upon the self-report of the family."

CONTAINING COSTS: Though hospice observers and caregivers believe that on the whole it provides the terminally ill with a welcome alternative to institutionalized medicine, they agree that managed care and Medicare have altered the movement.

The good news is that more people have access to hospice care. The bad news is that bottom-line-oriented management often minimizes spiritual care and other nonmedical aspects of hospice care.

Further, there are signs in Oregon that cost issues may push hospice care toward acceptance of its moral nemesis, physician-assisted suicide.

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March 2 1998, Vol. 42, No. 3