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Discordance between the perceptions of clinicians and families about end-of-life trajectories in hospitalized dementia patients

Published online by Cambridge University Press:  06 April 2021

Felicity Moon Open the ORCID record for Felicity Moon [Opens in a new window] ,
David W. Kissane  and
Fiona McDermott
Felicity Moon*
Affiliation:
Department of Social Work, Monash Medical Centre, Clayton, VIC, Australia Department of Social Work, School of Primary and Allied Health Care, Faculty of Medicine Nursing and Health Sciences, Monash University, Caulfield East, VIC, Australia
David W. Kissane
Affiliation:
School of Medicine, University of Notre Dame Australia, Darlinghurst, NSW, Australia Cunningham Centre for Palliative Care Research, St Vincent's Hospital, Sydney, Australia Department of Palliative Care, Cabrini Health, Malvern, VIC, Australia Department of Psychiatry, Monash University, Clayton, VIC, Australia
Fiona McDermott
Affiliation:
Department of Social Work, School of Primary and Allied Health Care, Faculty of Medicine Nursing and Health Sciences, Monash University, Caulfield East, VIC, Australia
*
Author for correspondence: Felicity Moon, Department of Social Work, Monash Medical Centre, 246 Clayton Road, Clayton, VIC3168, Australia. E-mail: felicity.moon@monashhealth.org
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Abstract

Background

Due to the unpredictable dementia trajectory, it is challenging to recognize illness progression and the appropriateness of a palliative approach. Further confusion occurs during hospitalization where the presence of comorbid conditions complicates prognostication. This research examined clinicians and families' perceptions of dementia as a terminal condition in relation to end-of-life admissions.

Context

The study was based in the General Medicine units of one Australian public hospital. Medical, nursing, and social work clinicians were recruited to reflect multidisciplinary perspectives. Bereaved caregivers of deceased patients with dementia were interviewed 3 months following death.

Methods

Qualitative research underpinned by a social constructionist epistemology and framed through complex systems theory. Semi-structured interviews generated data that illuminated perceptions of deterioration observed toward the end of life.

Results

Although participants anticipated general cognitive and physical deterioration associated with dementia, the emergence of comorbid illness made it difficult to predict the onset of the end of life. During a hospital admission, clinicians attributed the end of life to the advanced outcomes of dementia, whereas families described new medical crises. End-of-life admissions illuminated intersections between dementia and comorbidities rather than illness progression. In contrast with the perception that people with dementia lose awareness at the end of life, families drew attention to evidence that their loved one was present during the dying phase.

Significance of results

Our findings challenge the dominant understanding of dementia trajectories. Bifurcations between clinicians and families' views demonstrate the difficulties in recognizing end-of-life transitions. Implications for the integration of palliative care are considered.

Keywords

CaregiversDementiaHospitalizationPalliative careQualitative researchTerminal care
Type
Original Article
Information
Palliative & Supportive Care , Volume 19 , Issue 3 , June 2021 , pp. 304 - 311
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Copyright
Copyright © The Author(s), 2021. Published by Cambridge University Press

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