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Erschienen in: Journal of General Internal Medicine 10/2008

01.10.2008

Using the Experiences of Bereaved Caregivers to Inform Patient- and Caregiver-centered Advance Care Planning

verfasst von: Terri R. Fried, MD, John R. O’Leary, MA

Erschienen in: Journal of General Internal Medicine | Ausgabe 10/2008

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Abstract

Background

Traditional approaches to advance care planning (ACP) have many limitations; new approaches are being developed with the goal of improving end-of-life care.

Objective

To understand how the end-of-life care experiences of older patients and their caregivers can inform the development of new approaches to ACP.

Design

Qualitative cross-sectional study.

Participants

Caregivers of community-dwelling persons age ≥ 60 years who died with advanced cancer, chronic obstructive pulmonary disease, or heart failure during follow-up in a longitudinal study.

Approach

In-depth interviews were conducted 6 months after the patient’s death with 64 caregivers. Interviews began with open-ended questions to encourage the caregiver to tell the story of the patient’s experiences at the end of life. Additional questions asked about how decisions were made, patient–caregiver, patient–clinician, and caregiver–clinician communication.

Main Results

Although the experiences recounted by caregivers were highly individual, several common themes emerged from the interviews. These included the following: 1) the lack of availability of treatment options for certain patients, prompting patients and caregivers to consider broader end-of-life issues, 2) changes in preferences at the very end of an illness, 3) variability in patient and caregiver desire for and readiness to hear information about the patient’s illness, and 4) difficulties with patient–caregiver communication.

Discussion

The experiences of older patients at the end of life and their caregivers support a form of ACP that includes a broader set of issues than treatment decision-making alone, recognizes the dynamic nature of preferences, and focuses on addressing barriers to patient–caregiver communication.
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Metadaten
Titel
Using the Experiences of Bereaved Caregivers to Inform Patient- and Caregiver-centered Advance Care Planning
verfasst von
Terri R. Fried, MD
John R. O’Leary, MA
Publikationsdatum
01.10.2008
Verlag
Springer-Verlag
Erschienen in
Journal of General Internal Medicine / Ausgabe 10/2008
Print ISSN: 0884-8734
Elektronische ISSN: 1525-1497
DOI
https://doi.org/10.1007/s11606-008-0748-0

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