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“I want to go home”: How location at death influences caregiver well-being in bereavement

Published online by Cambridge University Press:  16 March 2020

Deborah P. Waldrop Open the ORCID record for Deborah P. Waldrop [Opens in a new window]  and
Jacqueline M. McGinley
Deborah P. Waldrop*
Affiliation:
University at Buffalo School of Social Work, 685 Baldy Hall, Buffalo, NY
Jacqueline M. McGinley
Affiliation:
Department of Social Work, Binghamton University, PO Box 6000, Binghamton, NY
*
Author for correspondence: Deborah P. Waldrop, University at Buffalo School of Social Work, 685 Baldy Hall, Buffalo, NY14260, USA. E-mail: dwaldrop@buffalo.edu
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Abstract

Objectives

Goal concordant or congruent care involves having expressed wishes upheld. Yet, the preferred location for end-of-life care may be unaddressed. Caregiver–patient congruence between preferred and actual locations of care may influence the quality of life in bereavement. The study aimed to explore how the congruence between caregiver–patient preferred and actual locations of death influenced well-being in bereavement.

Methods

Mixed methods were employed. In-depth in-person interviews were conducted with 108 bereaved caregivers of a hospice patient about 4 months after the death. An interview guide was used to collect quantitative and qualitative data: demographics, decision-making, Core Bereavement Items (CBI), Health Related Quality of Life, and perspectives on the end-of-life experiences. Data were analyzed with a convergent mixed methods one-phase process.

Results

Patient preference–actual location congruence occurred for 53%; caregiver preference–actual location congruence occurred for 74%; caregiver–patient preference and location of death occurred for 48%. Participants who reported some type of incongruence demonstrated higher levels of distress, including more days of being physically and emotionally unwell and more intense bereavement symptoms. The Acute Separation subscale and CBI total scores demonstrated significant differences for participants who experienced incongruence compared with those who did not. Preference location congruence themes emerged: (1) caregiver–patient location congruence, (2) caregiver–patient location incongruence, and (3) location informed bereavement.

Conclusions

Congruence between a dying person's preferred and actual locations at death has been considered good care. There has been little focus on the reciprocity between caregiver–patient wishes. Discussing preferences about the place of end-stage care may not make location congruence possible, but it can foster shared understanding and support for caregivers’ sense of coherence and well-being in bereavement.

Keywords

Advance care planningDecision-makingGoal-concordant careSense of coherence
Type
Original Article
Information
Palliative & Supportive Care , Volume 18 , Issue 6 , December 2020 , pp. 691 - 698
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Copyright
Copyright © Cambridge University Press 2020

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