Final decisions: how hospice enrollment prompts meaningful choices about life closure.
OBJECTIVE
The purpose of this study was to explore and describe decisions that faced newly enrolled hospice patients and their caregivers after hospice enrollment.


METHODS
An exploratory, descriptive, cross-sectional design was employed using qualitative methods. In-depth in-person interviews were conducted with current hospice patients (n = 35) and caregivers (n = 45) from 53 families.


RESULTS
The decision to enroll in hospice was a critical juncture on the trajectory of a terminal illness that allowed patients and their families an opportunity to consider subsequent tasks that were important for life closure. A typology of five decisions is presented: (1) operationalized advance care planning (ACP): a renewed focus on decisions about care at life's end; (2) surrogate decision-making: caregivers begin making both informal and formal decisions for the dying person; (3) meaning-making: the foreshortened time brings into focus decisions about seeing special people, attending events, and creating memories; (4) Location of death: decisions about whether the person wants to and can remain at home to die; and (5) final acts: decisions about funeral arrangements, wills, and leaving a legacy become central. ACP was found to exist on a continuum that ranged from absent ACP, dormant ACP, simplified ACP to activated ACP. Hospice enrollment became a catalyst for reactivating discussion of end-of-life choices.


CONCLUSIONS
Hospice enrollment prompts the need to consider subsequent important choices that contribute to meaningful life closure, are central to the completion of a family relationship, and may influence adaptation in bereaved caregivers. It is important for clinicians to recognize that well-timed encouragement to consider and explore the use of hospice services, although it may indeed diminish hope for cure or recovery, simultaneously offers an opportunity to engage with important and time-sensitive developmental tasks.
University at Buffalo School of Social Work,Buffalo, New York.
Deborah P
DP
Waldrop
University at Buffalo School of Nursing,Buffalo, New York.
Mary Ann
MA
Meeker
D032722:Advance Care Planning / Q000592:standards*; D000368:Aged; D000369:Aged, 80 and over; D017028:Caregivers / Q000523:psychology* / Q000592:standards; D003430:Cross-Sectional Studies; D003657:Decision Making; D005260:Female; D017051:Hospice Care / Q000523:psychology* / Q000592:standards; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D036301:Qualitative Research; D019452:Terminally Ill / Q000523:psychology*