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Experiences and Perspectives on Advance Care Planning among Individuals Living with Serious Physical Disabilities.
J Palliat Med. 2017 02; 20(2):127-133.JP

Abstract

BACKGROUND

Despite frequent encounters with the healthcare system and high risk for secondary conditions, it is unclear how frequently individuals living with serious physical disabilities document advance directives (AD) or engage in advance care planning (ACP). Their perspectives on these topics are largely unknown.

OBJECTIVE

We aimed to characterize the perspectives of individuals with serious physical disabilities receiving care from two different healthcare delivery settings on the value of AD and ACP.

DESIGN

Key informant interviews were conducted, audiorecorded, transcribed, and analyzed using thematic analysis and constant comparative analysis.

SUBJECTS

Twenty-five adults with serious physical disabilities were interviewed.

RESULTS

Five organizing themes emerged as follows: (A) AD is a right versus responsibility, (B) past medical experiences influence ACP engagement, (C) ACP requires relationship-centered decision support, (D) concerns for care after death, and (E) suggestions for improving ACP experiences. Participants wished to engage in a relationship-centered approach to ACP, yet voiced hesitation due to experiences of significant medical bias and mistreatment, typically surrounding judgments of their quality of life.

CONCLUSIONS

Better health professional training in ACP and heightened awareness of the unique ACP considerations pertaining to people with disabilities are recommended.

Authors+Show Affiliations

1 Boston Medical Center, Boston University Medical Center , Boston, Massachusetts.2 Department of Family Medicine, Boston Medical Center, The University of California , San Francisco School of Medicine, Boston, Massachusetts.3 Department of Family Medicine, Boston Medical Center, The University of Nottingham Medical School , Nottingham, United Kingdom .4 Department of Family Medicine, Yale University School of Nursing , Boston Scientific, Orange, Connecticut.5 Commonwealth Community Care, Commonwealth Care Alliance Medical Group , Lawrence, Kansas.

Pub Type(s)

Journal Article
Research Support, U.S. Gov't, P.H.S.

Language

eng

PubMed ID

27809645

Citation

Mitchell, Suzanne E., et al. "Experiences and Perspectives On Advance Care Planning Among Individuals Living With Serious Physical Disabilities." Journal of Palliative Medicine, vol. 20, no. 2, 2017, pp. 127-133.
Mitchell SE, Weigel GM, Stewart SK, et al. Experiences and Perspectives on Advance Care Planning among Individuals Living with Serious Physical Disabilities. J Palliat Med. 2017;20(2):127-133.
Mitchell, S. E., Weigel, G. M., Stewart, S. K., Mako, M., & Loughnane, J. F. (2017). Experiences and Perspectives on Advance Care Planning among Individuals Living with Serious Physical Disabilities. Journal of Palliative Medicine, 20(2), 127-133. https://doi.org/10.1089/jpm.2016.0168
Mitchell SE, et al. Experiences and Perspectives On Advance Care Planning Among Individuals Living With Serious Physical Disabilities. J Palliat Med. 2017;20(2):127-133. PubMed PMID: 27809645.
* Article titles in AMA citation format should be in sentence-case
TY - JOUR T1 - Experiences and Perspectives on Advance Care Planning among Individuals Living with Serious Physical Disabilities. AU - Mitchell,Suzanne E, AU - Weigel,Gabriela M, AU - Stewart,Sabrina K A, AU - Mako,Morgan, AU - Loughnane,John F, Y1 - 2016/11/03/ PY - 2016/11/5/pubmed PY - 2018/2/24/medline PY - 2016/11/5/entrez KW - advance care planning KW - advance directive KW - disability KW - shared decision making SP - 127 EP - 133 JF - Journal of palliative medicine JO - J Palliat Med VL - 20 IS - 2 N2 - BACKGROUND: Despite frequent encounters with the healthcare system and high risk for secondary conditions, it is unclear how frequently individuals living with serious physical disabilities document advance directives (AD) or engage in advance care planning (ACP). Their perspectives on these topics are largely unknown. OBJECTIVE: We aimed to characterize the perspectives of individuals with serious physical disabilities receiving care from two different healthcare delivery settings on the value of AD and ACP. DESIGN: Key informant interviews were conducted, audiorecorded, transcribed, and analyzed using thematic analysis and constant comparative analysis. SUBJECTS: Twenty-five adults with serious physical disabilities were interviewed. RESULTS: Five organizing themes emerged as follows: (A) AD is a right versus responsibility, (B) past medical experiences influence ACP engagement, (C) ACP requires relationship-centered decision support, (D) concerns for care after death, and (E) suggestions for improving ACP experiences. Participants wished to engage in a relationship-centered approach to ACP, yet voiced hesitation due to experiences of significant medical bias and mistreatment, typically surrounding judgments of their quality of life. CONCLUSIONS: Better health professional training in ACP and heightened awareness of the unique ACP considerations pertaining to people with disabilities are recommended. SN - 1557-7740 UR - https://www.unboundmedicine.com/medline/citation/27809645/Experiences_and_Perspectives_on_Advance_Care_Planning_among_Individuals_Living_with_Serious_Physical_Disabilities_ L2 - https://www.liebertpub.com/doi/full/10.1089/jpm.2016.0168?url_ver=Z39.88-2003&rfr_id=ori:rid:crossref.org&rfr_dat=cr_pub=pubmed DB - PRIME DP - Unbound Medicine ER -