Hospice at Home
What is the current availability and utilization of hospice in the United States? Approximately 2.5 million deaths (both unexpected and anticipated) occur each year, and nationwide more than half of those take place in a hospital or other health care facility, although this percentage
varies widely among regions of the country. In institutions, as many as 70 percent of the deaths come after some decision not to treat (including a do not resuscitate order). The hospice movement was originally seen by many in the medical community as a hostile counterculture opposed to mainstream medicine. The doctors were not entirely wrong. Nonetheless, with remarkable tenacity, hospice has flourished. Twenty-five years after its inception, an estimated 38 percent of those facing an anticipated death from cancer and from chronic diseases such as CHF and AIDS receive hospice care.
Prior to hospice, however, profoundly ill patients in community hospitals and academically oriented metropolitan medical centers were often surrounded by the latest technological advances to combat disease, yet when deemed “terminal,” they were given rudimentary forms of palliative care at best. They fell victim to medicine’s inability to resolve what Daniel Callahan has called the “conflict about the place and meaning of death in human life. . . a conflict that pits the underlying logic of the research imperative, which is to overcome death itself, against the newly emergent (although ancient) clinical imperative to accept death as a part of life in order to make dying as tolerable as possible.”
Hospice at Home Statistics
The number of hospice programs in the United States has grown from one in 1974 to some 3200 programs today, and the number of programs
doubled between 1986 and 1998. In 1998 there were 540,000 hospice admissions, and in 2001 that figure is believed to be closer to 775,000. The most rapid period of growth has occurred since the early 1990s. Hospice programs tend to be nonprofit (62 percent in 2000) and relatively small, with over half the programs having annual budgets of less than $1 million, although perhaps 100 programs in the country have budgets of
$7-10 million. In 1995, 60 percent of admissions were for a primary diagnosis of cancer, and more recently, the growth of certain non-cancer admis-
sions may be declining due to regulatory scrutiny. This is particularly troubling in light of the problem of just access.
Although the growth of hospice programs and admissions over the years is encouraging, serious problems remain in at least two of the three dimensions of access identified above admissions and length of stay. The ethics of access is most easily illuminated by considering patients who
would benefit from hospice care but who are not receiving it at all, and patients who receive hospice care but for such a brief period before their death
that they cannot obtain the full benefits of hospice care. Assume that 50 percent of the estimated 775,000 annual hospice admissions—387,500—are patients with a non-cancer diagnosis. Yet 940,000 Americans die each year of heart disease, 113,000 of lung disease, 158,000 of cerebrovascular diseases, and 23,000 from Alzheimer’s. These rough figures, which admittedly include sudden and unanticipated deaths, suggest how far we have to go before everyone who could benefit from hospice care does. But not just any access to hospice is sufficient. The holistic, psychosocial nature of hospice care is such that relationships of good communication,mutual understanding, trust, and empathy must be established between hospice caregivers and patients and families. This ordinarily takes several weeks or more. Hospice physicians and nurses may sometimes be able to get distressing physical symptoms under control within forty-eight hours, but such crisis-oriented care is a far cry from complete hospice care.
Family and Hospice at Home
Dying persons and their families have a strong sense of mutual obligation. The dying want to be surrounded by and cared for by family, and
families normally attach great importance to being able to be with them and care for them. (The families of some persons with AIDS maybe an
exception.) Family members believe they have a moral obligation to provide this care and support; at the same time, dying persons do not want
to be a burden and believe they ought to be concerned about the well-being of their families. They believe they should take their families’ financial,
mental, and emotional well-being into account in the decisions they make about end of life care, and they try to clarify their wishes to their families to lessen the burden of decision making in case they become unable to make decisions. As a result, Hospice at home and utilizing these services are the best way to help both the patient and their caregivers.