eCite Digital Repository

Truth, hope and the disclosure of a dementia diagnosis: a scoping review of the ethical considerations from the perspective of the person, carer and clinician

Citation

Merl, H and Alty, J and Salmon, K and Doherty, KV, Truth, hope and the disclosure of a dementia diagnosis: a scoping review of the ethical considerations from the perspective of the person, carer and clinician, Dementia pp. 1-19. ISSN 1471-3012 (2022) [Refereed Article]

Copyright Statement

The Author(s) 2022

DOI: doi:10.1177/14713012211067882

Abstract

This paper explores contemporary approaches to balancing truth with the provision of hope during the disclosure of a dementia diagnosis. We discuss the ethical significance of these practices as they relate to each member of the triad - the person, the carer and the clinician - at the point of diagnosis and beyond. The process of disclosing a diagnosis of dementia is complex. It encompasses breaking bad news while balancing hope, with truth about a progressive life-limiting condition. The process of receiving the diagnosis likewise challenges the person who may be unprepared for the diagnosis, while carers seek information and supports. The impact of receiving a diagnosis of dementia can be life-changing and harmful at the personal level - for both the person and carer. This risk of harm becomes a critical consideration for clinicians when deciding on the level of truth: what information should be relayed and to whom? That risk is also balanced against the ethical issue of patient autonomy, which includes the right to know (or not) and make informed decisions about therapeutic interventions. While the consensus is that the autonomy of the person living with dementia must be upheld, controversy exists regarding the extent to which this should occur. For instance, at diagnosis, it is common for clinicians to use euphemisms rather than the word dementia to maintain hope, even though people and carers prefer to know the diagnosis. This practice of therapeutic lying is a pervasive ethical issue in dementia care, made more acceptable by its roots in diagnosis disclosure.

Item Details

Item Type:Refereed Article
Keywords:dementia, diagnosis, communication, hope, truth, cognitive impairment
Research Division:Biomedical and Clinical Sciences
Research Group:Clinical sciences
Research Field:Geriatrics and gerontology
Objective Division:Health
Objective Group:Evaluation of health and support services
Objective Field:Health education and promotion
UTAS Author:Merl, H (Mrs Helga Jenkins)
UTAS Author:Alty, J (Associate Professor Jane Alty)
UTAS Author:Salmon, K (Dr Katharine Salmon)
UTAS Author:Doherty, KV (Dr Kathleen Doherty)
ID Code:148922
Year Published:2022
Deposited By:Wicking Dementia Research and Education Centre
Deposited On:2022-02-21
Last Modified:2022-03-17
Downloads:0

Repository Staff Only: item control page