Objective: Previous studies reveal that many terminally ill
patients never receive hospice care. Among those who do receive hospice,
many enroll very close to the time of death. Nationally, between 1992 and
1998, the median length of stay at hospice declined 27%, from 26 to 19
days. In our prior study of 206 patients diagnosed with terminal cancer
and using hospice, we found that one-third enrolled with hospice within 1
week prior to death. Late hospice enrollment can have deleterious effects
on patients and their family members. The aim of the present study was to
characterize common experiences of patients and primary family caregivers
as they transition to hospice, focusing on caregiver perceptions of
factors that might contribute to delays in hospice enrollment.
Methods: We conducted in-depth interviews with a purposive
sample of 12 caregivers selected from a population of primary family
caregivers of patients with terminal cancer who enrolled with hospice in
Connecticut between September 2000 and September 2001. Respondents
represented different ages, genders, and kinship relationships with
patients. Respondents were asked about the patient's care trajectory,
how they first learned about hospice, and their experiences as they
transitioned to hospice. NUD*IST software was used for qualitative data
coding and analysis.
Results: Constant comparative analysis identified three
themes common to the experience of transitioning to hospice: (1)
caregivers' acceptance of the impending death, (2) challenges in
negotiating the health care system across the continuum of care, and (3)
changing patient–family dynamics.
Significance of results: Identification of these themes from
the caregivers' perspective generates hypotheses about potential
delays in hospice and may ultimately be useful in the design of
interventions that are consistent with caregivers' needs.