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Final decisions: How hospice enrollment prompts meaningful choices about life closure

Published online by Cambridge University Press:  13 August 2013

Deborah P. Waldrop  and
Mary Ann Meeker
Deborah P. Waldrop*
Affiliation:
University at Buffalo School of Social Work, Buffalo, New York
Mary Ann Meeker
Affiliation:
University at Buffalo School of Nursing, Buffalo, New York
*
Address Correspondence and reprint requests to: Deborah P. Waldrop, University at Buffalo School of Social Work, 685 Baldy Hall, Buffalo, NY 14260. E-mail: [email protected]
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Abstract

Objective:

The purpose of this study was to explore and describe decisions that faced newly enrolled hospice patients and their caregivers after hospice enrollment.

Method:

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.

Significance of results:

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.

Keywords

Hospice decision-makingEnd of lifeLife closureHuman development
Type
Original Articles
Information
Palliative & Supportive Care , Volume 12 , Issue 3 , June 2014 , pp. 211 - 221
Copyright
Copyright © Cambridge University Press 2013 

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