Patient Views on Advance Care Planning in Cirrhosis: A Qualitative Analysis

Aim. To investigate patient experiences and perceptions of advance care planning (ACP) process in cirrhosis. Methods. Purposive sampling was used to identify and recruit participants (N = 17) from discrete patient groups: compensated with no prior decompensation, decompensated and not yet listed for...

Full description

Saved in:
Bibliographic Details
Main Authors: Michelle Carbonneau, Tracy Davyduke, Jude Spiers, Amanda Brisebois, Kathleen Ismond, Puneeta Tandon
Format: Article
Language:English
Published: Wiley 2018-01-01
Series:Canadian Journal of Gastroenterology and Hepatology
Online Access:http://dx.doi.org/10.1155/2018/4040518
Tags: Add Tag
No Tags, Be the first to tag this record!
_version_ 1849396338831130624
author Michelle Carbonneau
Tracy Davyduke
Jude Spiers
Amanda Brisebois
Kathleen Ismond
Puneeta Tandon
author_facet Michelle Carbonneau
Tracy Davyduke
Jude Spiers
Amanda Brisebois
Kathleen Ismond
Puneeta Tandon
author_sort Michelle Carbonneau
collection DOAJ
description Aim. To investigate patient experiences and perceptions of advance care planning (ACP) process in cirrhosis. Methods. Purposive sampling was used to identify and recruit participants (N = 17) from discrete patient groups: compensated with no prior decompensation, decompensated and not yet listed for transplant, transplant wait listed, medical contraindications for transplant, and low socioeconomic status. Review and discussion of local ACP videos, documents, and experiences with ACP occurred in two individual interviews and four focus groups. Data were analyzed using inductive content analysis including iterative processes of open coding, categorization, and abstraction. Results. Three overarching categories emerged: (1) lack of understanding about disease trajectories and ACP processes, (2) roles of alternate decision makers, and (3) preferences for receiving ACP information. Most patients desired advanced care-planning conversations before the onset of decompensation (specifically hepatic encephalopathy) with a care provider with whom they had a trusting, preexisting relationship. Involvement of the alternate decision makers was of critical importance to participants, as was the use of direct, easy to understand patient education tools that address practical issues. Conclusion. Our findings support the need for early advance care planning in the outpatient setting. Outpatient clinicians may play a key role in facilitating these discussions.
format Article
id doaj-art-b46da1d528fa47548651feb76981e9eb
institution Kabale University
issn 2291-2789
2291-2797
language English
publishDate 2018-01-01
publisher Wiley
record_format Article
series Canadian Journal of Gastroenterology and Hepatology
spelling doaj-art-b46da1d528fa47548651feb76981e9eb2025-08-20T03:39:22ZengWileyCanadian Journal of Gastroenterology and Hepatology2291-27892291-27972018-01-01201810.1155/2018/40405184040518Patient Views on Advance Care Planning in Cirrhosis: A Qualitative AnalysisMichelle Carbonneau0Tracy Davyduke1Jude Spiers2Amanda Brisebois3Kathleen Ismond4Puneeta Tandon5Alberta Health Services, 8440 112 Street, Edmonton, AB, T6G 2B7, CanadaAlberta Health Services, 8440 112 Street, Edmonton, AB, T6G 2B7, CanadaUniversity of Alberta, Faculty of Nursing, 3-141 Edmonton Clinic Health Academy (ECHA) 11405 87 Avenue, Edmonton, AB, T6G 1C9, CanadaUniversity of Alberta, Faculty of Medicine, 2J2.00 Walter C Mackenzie Health Sciences Centre, 8440 112 St., Edmonton, AB, T6G 2R7, CanadaUniversity of Alberta, Faculty of Medicine, 2J2.00 Walter C Mackenzie Health Sciences Centre, 8440 112 St., Edmonton, AB, T6G 2R7, CanadaCirrhosis Care Clinic, 8540 112 Street, Zeidler Ledcor Centre, Edmonton, AB, T6G 2X8, CanadaAim. To investigate patient experiences and perceptions of advance care planning (ACP) process in cirrhosis. Methods. Purposive sampling was used to identify and recruit participants (N = 17) from discrete patient groups: compensated with no prior decompensation, decompensated and not yet listed for transplant, transplant wait listed, medical contraindications for transplant, and low socioeconomic status. Review and discussion of local ACP videos, documents, and experiences with ACP occurred in two individual interviews and four focus groups. Data were analyzed using inductive content analysis including iterative processes of open coding, categorization, and abstraction. Results. Three overarching categories emerged: (1) lack of understanding about disease trajectories and ACP processes, (2) roles of alternate decision makers, and (3) preferences for receiving ACP information. Most patients desired advanced care-planning conversations before the onset of decompensation (specifically hepatic encephalopathy) with a care provider with whom they had a trusting, preexisting relationship. Involvement of the alternate decision makers was of critical importance to participants, as was the use of direct, easy to understand patient education tools that address practical issues. Conclusion. Our findings support the need for early advance care planning in the outpatient setting. Outpatient clinicians may play a key role in facilitating these discussions.http://dx.doi.org/10.1155/2018/4040518
spellingShingle Michelle Carbonneau
Tracy Davyduke
Jude Spiers
Amanda Brisebois
Kathleen Ismond
Puneeta Tandon
Patient Views on Advance Care Planning in Cirrhosis: A Qualitative Analysis
Canadian Journal of Gastroenterology and Hepatology
title Patient Views on Advance Care Planning in Cirrhosis: A Qualitative Analysis
title_full Patient Views on Advance Care Planning in Cirrhosis: A Qualitative Analysis
title_fullStr Patient Views on Advance Care Planning in Cirrhosis: A Qualitative Analysis
title_full_unstemmed Patient Views on Advance Care Planning in Cirrhosis: A Qualitative Analysis
title_short Patient Views on Advance Care Planning in Cirrhosis: A Qualitative Analysis
title_sort patient views on advance care planning in cirrhosis a qualitative analysis
url http://dx.doi.org/10.1155/2018/4040518
work_keys_str_mv AT michellecarbonneau patientviewsonadvancecareplanningincirrhosisaqualitativeanalysis
AT tracydavyduke patientviewsonadvancecareplanningincirrhosisaqualitativeanalysis
AT judespiers patientviewsonadvancecareplanningincirrhosisaqualitativeanalysis
AT amandabrisebois patientviewsonadvancecareplanningincirrhosisaqualitativeanalysis
AT kathleenismond patientviewsonadvancecareplanningincirrhosisaqualitativeanalysis
AT puneetatandon patientviewsonadvancecareplanningincirrhosisaqualitativeanalysis