H59 Advance care planning in Huntington's disease: the elderly care physician's perspective. (12th September 2022)

• Record Type: Journal Article
• Authors: Ekkel, Marina; Depla, Marja; Verschuur, Els; Veenhuizen, Ruth; Onwuteaka-Philipsen, Bregje; Hertogh, Cees
• Is Part Of: Journal of neurology, neurosurgery and psychiatry. Volume 93(2022)Supplement 1
• Page Start: A83
• Page End: A84
• Publication Date: 2022-09-12
• Subjects: Advance care planning -- nursing home -- elderly care physician -- euthanasia; Neurology -- Periodicals; Nervous system -- Surgery -- Periodicals; Psychiatry -- Periodicals; 616.8
• DOI: 10.1136/jnnp-2022-ehdn.223
• Languages: English
• ISSNs: 0022-3050

Abstract

Abstract : Background: Huntington's 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). However, little is known about ACP in HD. Aim: To describe the experiences of elderly care physicians (ECPs) with ACP in HD patients. Methods: A qualitative interview study with nine elderly care physicians working in a HD-specialized nursing home in the Netherlands. Results: Two phases could be identified in the process of ACP. In the first phase, when the fearful future is still the future, the ECP asks about the patient's wishes for the future in an accommodating way. In the second phase, when the feared future is coming closer, future medical treatment and care becomes less hypothetical, and agreement has to be reached from ACP-conversations and previously formulated wishes. In this phase the ECP takes a more guiding role, and consequently encounters more difficulties, such as trying to reach agreement and maintaining a positive patient/family-physician relationship while dealing with resistance from patient or family. For most participants, talking about wishes concerning euthanasia appeared to be a standard part of ACP. Conclusions: ACP in HD can be classified into two phases, which differ in ECP's approach and complexity experienced by the ECP.