In lieu of an abstract, here is a brief excerpt of the content:

183 VVVVVVVVVVV Unintended Consequences Hospice, Hospitals, and the Not-So-Good Death KATHRYN TEMPLE Some families find hospice a dependable, even indispensable resource, a way to avoid hospital care and instead provide a warm environment for the terminally ill family member. More than a mere alternative to hospital care at the end of life, hospice can offer a terminal patient and his or her family dignity and security during difficult times. Unfortunately, my family found that neither hospital nor hospice had much to offer. Instead, we encountered an inhospitable, even hostile hospital environment, made worse by what may be the inevitable inadequacies of the hospice system—its inability to meet the expectations that its very existence creates. While this essay is informed by my experience and that of my family, as well as by my research and reading, I recognize that our difficulties with hospice are not universal. Regions differ, hospice organizations differ, families differ. But, as I suggest here, hospice tends to promise more than it can offer. Entangled as it is with other problems endemic to the American medical system, problems involving the institutional needs of hospitals, managed care, and insurance company mandates, hospice often comes up short in its efforts to provide what it calls “a good death,” a death marked by dignity, choice, and strong family connections. Like most families confronted with the imminent, untimely death of a family member, my family had only the vaguest idea of what hospice provided . When I checked our insurance policy the week my husband was diagnosed with what proved to be an incurable, aggressive cancer, I was reassured by the very general claim that hospice was “covered.” I assumed we were covered by what I thought of as a benign, palliative-care system that would provide resources for both our family and my husband, a system that would understand what we were going through and help us with the physical , emotional, and financial issues that accompany death from terminal cancer. That understanding of hospice—though encouraged by my reading of the hospice publicity I’d run across over the years as well as by a discussion with a hospice representative during the early weeks of my husband’s diagnosis —turned out to be unreasonable, ill informed, and naive. Our story (for it is my husband’s and my daughter’s story as well, and, to a lesser extent, the story of all of those who loved my husband—his family, his colleagues, and his friends) is one of hospice’s best intentions thwarted, in part by the underpublicized problems that plague the medical system as a whole. Our experience calls into question some of the very ideals that the hospice movement holds dear—“choice,” “care,” and “the good death”— ideals at the core of its identity. While hospice has helped many, gained many devotees, assisted many “on that final journey,” it has also escaped scrutiny through relying on the repetition of these generalized ideals that, until placed under pressure, seem almost immune to critique. In particular, my understanding of what choice might mean in this context, my belief that hospice would offer care as promised, and ultimately my faith in what seems to serve as a sort of mantra for the hospice system, “the good death,” would be shattered before we were done. Choice became a relative term; care did not include the care we needed. And while some deaths are better than others, no one can guarantee what hospice calls a “good death.” “Hospice is not a place, but an idea,” asserts our local hospice Web site.1 If so, it is an “idea” supported by Medicare funds, covered by many health insurance plans, and relied upon by cancer centers, hospitals, and nursing homes to provide care for the dying. In other words, it is a highly funded, institutionalized, and concretized “idea,” one that operates not only on the levels of idea and ideal, but also on the level of the real world where real people become ill and their families struggle to help them. For hospice does not exist alone but at the nexus of life and death, of hospital care, home care, and no care, of patient, caregiver, and survivors. Hospice operates in these interstitial spaces: here is where good intentions meet unintended consequences , where ideals meet real patients and real caregivers. The modern hospice movement arose, of course, from good intentions. Hospice, brought into being in England in the 1960s primarily by Dame...

Share