The study reported in this article was designed to determine the attitudes of oncology social workers to-ward hospice care and the frequency with which they referred terminally ill patients to hospice care. A follow-up study sought to explain the most interesting finding of the initial study--that is, that workers reported uniformly favorable attitudes toward hospice care, yet referred to hospice fewer than half of their terminally ill patients.
The literature indicates that palliative care for terminally ill patients helps patients manage pain effectively and stay active in terms of their personal relationships and pursuit of emotional and spiritual growth (Dobratz, 1995; Malone, 2002; Saunders, 1995). Moreover, patients who go home to die using a hospice support program typically demonstrate greater acceptance of their impending deaths, higher self-esteem, and greater subjective well-being than those who die in a hospital setting (Davies, 1996; Dobratz).
It would appear to be desirable for patients with a terminal illness to enter hospice programs. It would also appear desirable for them to enter hospice early in the course of the illness to minimize the pain, to allow adequate time for the emotional and spiritual work needed to prepare for death, and to provide adequate respite care for the family members who will care for the terminally ill patient.
However, hospice services are underused. Novitskie (1993) pointed out that despite the rapid growth in the number of hospice programs in the United States, "the number of patient deaths that occur in the acute care hospital are much greater than the number of patient deaths that occur in the hospice" (p. 1). In a study of terminally ill children in Canada, Davies (1996) noted that despite the clear evidence that home care for the terminally ill is desirable, relatively few of the children she studied died at home.
Even when hospice care is used, the patient often enters the hospice program far too late. Dobratz (1995) pointed out that between 68 percent and 85 percent of patients who enter hospice programs are experiencing unnecessary, preventable pain by the time they begin receiving hospice care. She reported that more than 10 percent of the patients entering hospice programs are experiencing uncontrollable pain at the time they begin to receive the palliative care services provided by the hospice program. Based on a survey of 94 primary caregivers of hospice patients, Nathanson (1997) estimated that 77 percent of the patients were experiencing pain at the time they were admitted to hospice. Nearly half of the caregivers of these patients did not think that the referral to hospice had been made soon enough. In addition, the majority of the patients in this study had been in the hospice program for less than one month at the time of their death.
Christakis (1994) studied patients and the physicians who referred them to the Wissahickon Hospice in Philadelphia. He reported that 15 percent of the patients died within seven days of entering the program, and the median duration of survival after entering hospice was 29 days. He concluded that the average duration of stay was too short and should be increased to 60 to 90 days for patients to receive the best terminal care possible.
It is important to understand the factors that govern the decisions of patients and their families regarding whether and when to use hospice services. Little research has been done to determine the factors associated with the willingness to use hospice services, or with the willingness to use hospice services in a timely manner. Gochman and Bonham (1990) interviewed patients, caregivers, and other individuals who were involved in 150 cases in which the decision was made that the patient should enter hospice care. They concluded that discussion of the possibility of using hospice care was most likely to be initiated by a "professional outside that patient's household," typically a physician (p. …