Cited by 121Palliative Care and End-of-Life IssuesPalliative and Oncologic CareEthics and bioethics in healthcare

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

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Fried, Terri R., O’Leary, John R.·2008·Journal of General Internal Medicine

DOI 10.1007/s11606-008-0748-0PMC PMC2533358

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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 > or = 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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Authors: Fried, T. R., & O’Leary, J. R.
Affiliations: Yale University (US)
Corresponding author: Fried, Terri R.
ORCID: Fried, Terri R.
Venue: Journal of General Internal Medicine
Publisher: Springer Science and Business Media LLC
Published: 2008-07-30
Volume: 23
Issue: 10
Pages: 1602-1607
ISSN: 0884-8734 (ISSN-L)
1525-1497
DOI: 10.1007/s11606-008-0748-0
PMC: PMC2533358
OpenAlex: W1980493544
Cited by: 121
References: 32
Citations by year: 2026: 3 · 2025: 2 · 2024: 2 · 2023: 6 · 2022: 7 · 2021: 6 · 2020: 14 · 2019: 7 · 2018: 6 · 2017: 6 · 2016: 7 · 2015: 8 · 2014: 6 · 2013: 8 · 2012: 10
FWCI: 7.59
Type: journal article
Language: en
Open access: bronze
doi.org
Licence: www.springer.com/tdm (tdm)
Locations: Journal of General Internal Medicine (publishedVersion)
PubMed Central (publishedVersion)
PubMed (publishedVersion)
Funders: National Institute on Aging (K24AG028443, R01AG019769, K24 AG28443, R01 AG19769)
Topics: Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative Care and End-of-Life Issues
Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative and Oncologic Care
Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Ethics and bioethics in healthcare
Keywords: advance care planning, bereaved caregivers, end-of-life care, older adults, caregiver-patient communication, dynamic preferences, treatment decision-making, advanced cancer, chronic obstructive pulmonary disease, heart failure, community-dwelling patients, caregiver experiences
MeSH terms: Aged, Cross-Sectional Studies, Female, Follow-Up Studies, Humans, Interviews as Topic, Longitudinal Studies, Male, Middle Aged, Patient Participation, Caregivers, Hospice Care, Advance Care Planning

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

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