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Hospice, She Yelped: Examining the Quantity and Quality of Decision Support Available to Patient and Families Considering Hospice.

Authors :
Finnigan-Fox G
Matlock DD
Tate CE
Knoepke CE
Allen LA
Source :
Journal of pain and symptom management [J Pain Symptom Manage] 2017 Dec; Vol. 54 (6), pp. 916-921.e1. Date of Electronic Publication: 2017 Aug 15.
Publication Year :
2017

Abstract

Context: Whether to engage hospice is one of the most difficult medical decisions patients and families make. Meanwhile, misperceptions about hospice persist. Within this context, the breadth and depth of patient decision support materials for hospice are unknown.<br />Objectives: The objective of this study was to identify available patient decision aids (PtDAs) relating information about hospice care and compare that information with the informational needs expressed by real-world health care consumers.<br />Methods: First, the research team conducted an environmental scan of available PtDAs that included hospice as a treatment option and met six basic criteria defined by the International Patient Decision Aid Standards. Second, laypersons conducted an organic Web search for information regarding hospice, followed by a semi-structured interview eliciting perceptions of the available information. The setting was the University of Colorado Health Care System. Participants included 20 laypersons aged 18 years or older.<br />Results: The environmental scan identified 7PtDAs that included hospice. No PtDAs were designed primarily around hospice; rather, hospice was referenced under the umbrella of another treatment option. The layperson search identified information distinct from the scan; no participant accessed any of the above 7PtDAs. Many participants found the available online material confusing and biased, while failing to provide clear information on cost and lacking desired patient and caregiver testimonials.<br />Conclusion: We found no formal PtDA designed primarily to help patients/families contemplating hospice. Furthermore, accessible online information about hospice does not appear to meet patient and caregiver decisional needs. These findings support the development and dissemination of high-quality decision support materials for hospice.<br /> (Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Details

Language :
English
ISSN :
1873-6513
Volume :
54
Issue :
6
Database :
MEDLINE
Journal :
Journal of pain and symptom management
Publication Type :
Academic Journal
Accession number :
28818629
Full Text :
https://doi.org/10.1016/j.jpainsymman.2017.08.002