TY - JOUR
T1 - Advance Care Planning in Huntington Disease
T2 - The Elderly Care Physician's Perspective
AU - Ekkel, Marina R.
AU - Depla, Marja F. I. A.
AU - Sakhizadah, Zahra
AU - Verschuur, Els M. L.
AU - Veenhuizen, Ruth B.
AU - Onwuteaka-Philipsen, Bregje D.
AU - Hertogh, Cees M. P. M.
N1 - Funding Information: The study was funded by Atlant , Pieter van Foreest Stichting , and Stichting Vermogensbeheer Hoogeland Zorg . The funders had no role in study design, methods, subject recruitment, data collection and analysis, and preparation of the article. Publisher Copyright: © 2023 The Authors
PY - 2023/12
Y1 - 2023/12
N2 - Objective: Huntington disease (HD) has a poor prognosis. Decision-making capacity and communication ability may become impaired as the disease progresses. Therefore, HD patients are encouraged to engage in advance care planning (ACP). Elderly care physicians (ECPs) can play an important role in ACP in HD patients. However, little is known about their experiences in this role. The aim of this study is to gain insight into how ECPs practice ACP with HD patients. Design: A qualitative interview study. Setting and Participants: Nine ECPs working in HD-specialized nursing homes in the Netherlands. Methods: We conducted semistructured interviews with ECPs between June 2018 and July 2020. Results: Two phases could be identified in the process of ACP. In the first phase, when the feared future seems to be far away, the ECP asks about the patient's wishes for the future in an accommodating manner. In the second phase, when the feared future is closer, future medical treatment and care becomes less hypothetical. Agreement has to be reached on upcoming treatment decisions. In this phase, the ECP takes a more guiding role, and consequently encounters more difficulties, such as maintaining a positive patient/family-physician relationship while dealing with disagreements with patient or family. Most participants shared their experiences with euthanasia when asked about ACP. When making a comparison of ACP between HD patients and patients with other neurodegenerative disorders in nursing homes, the ECPs emphasized the similarities. Conclusions and Implications: ACP in HD can be classified into 2 phases, which differ in ECPs’ approach and the complexity experienced by the ECP. Awareness of this finding may help to further develop training and education in ACP, including dealing with euthanasia, to make ECPs feel better equipped in practicing ACP in HD.
AB - Objective: Huntington disease (HD) has a poor prognosis. Decision-making capacity and communication ability may become impaired as the disease progresses. Therefore, HD patients are encouraged to engage in advance care planning (ACP). Elderly care physicians (ECPs) can play an important role in ACP in HD patients. However, little is known about their experiences in this role. The aim of this study is to gain insight into how ECPs practice ACP with HD patients. Design: A qualitative interview study. Setting and Participants: Nine ECPs working in HD-specialized nursing homes in the Netherlands. Methods: We conducted semistructured interviews with ECPs between June 2018 and July 2020. Results: Two phases could be identified in the process of ACP. In the first phase, when the feared future seems to be far away, the ECP asks about the patient's wishes for the future in an accommodating manner. In the second phase, when the feared future is closer, future medical treatment and care becomes less hypothetical. Agreement has to be reached on upcoming treatment decisions. In this phase, the ECP takes a more guiding role, and consequently encounters more difficulties, such as maintaining a positive patient/family-physician relationship while dealing with disagreements with patient or family. Most participants shared their experiences with euthanasia when asked about ACP. When making a comparison of ACP between HD patients and patients with other neurodegenerative disorders in nursing homes, the ECPs emphasized the similarities. Conclusions and Implications: ACP in HD can be classified into 2 phases, which differ in ECPs’ approach and the complexity experienced by the ECP. Awareness of this finding may help to further develop training and education in ACP, including dealing with euthanasia, to make ECPs feel better equipped in practicing ACP in HD.
KW - Huntington's disease
KW - advance care planning
KW - long-term care
UR - http://www.scopus.com/inward/record.url?scp=85168843897&partnerID=8YFLogxK
U2 - https://doi.org/10.1016/j.jamda.2023.07.006
DO - https://doi.org/10.1016/j.jamda.2023.07.006
M3 - Article
C2 - 37586417
SN - 1525-8610
VL - 24
SP - 1843-1848.e1
JO - Journal of the American Medical Directors Association
JF - Journal of the American Medical Directors Association
IS - 12
ER -