Is It the Difference a Day Makes? Bereaved Caregivers' Perceptions of Short Hospice Enrollment

Abstract

Context: Hospice enrollment for less than one month has been considered too late by some caregivers and at the right time for others. Perceptions of the appropriate time for hospice enrollment in cancer are not well understood.

Objectives: The objectives of the study were to identify contributing factors of hospice utilization in cancer for ≤7 days, to describe and compare caregivers' perceptions of this as "too late" or at the "right time."

Methods: Semistructured, in-depth, in-person interviews were conducted with a sample subgroup of 45 bereaved caregivers of people who died from cancer within seven days of hospice enrollment. Interviews were transcribed and entered into Atlas.ti for coding. Data were grouped by participants' perceptions of the enrollment as "right time" or "too late."

Results: Overall, the mean length of enrollment was MLOE = 3.77 (SD = 1.8) days and ranged from three hours to seven days. The "right time" group (N = 25 [56%]) had a MLOE = 4.28 (SD = 1.7) days. The "too late" group (N = 20 [44%]) had a MLOE = 3.06 (SD = 1.03) days. The difference was statistically significant (P = 0.029). Precipitating factors included: late-stage diagnosis, continuing treatment, avoidance, inadequate preparation, and systems barriers. The "right time" experience was characterized by: perceived comfort, family needs were met, preparedness for death. The "too late" experience was characterized by perceived suffering, unprepared for death, and death was abrupt.

Conclusion: The findings suggest that one more day of hospice care may increase perceived comfort, symptom management, and decreased suffering and signal the need for rapid response protocols.

Keywords: Hospice enrollment; awareness of dying; hospice preparedness.

Fig. 1

The contributing factors and perceptions of short hospice enrollment for cancer patients.