Making clinical care decisions with people living with dementia in hospital: An integrative literature review

Abstract

Background: As our population ages, the percentage of hospitalised patients diagnosed with dementia is expected to rise. However, there is emerging evidence that people living with dementia may experience discrimination and exclusion from decisions about their clinical care. Although dementia affects cognition, many patients living with dementia want to participate in decision-making processes relating to their clinical care in hospital.

Objective: Identify the processes associated with making decisions about clinical care with people living with dementia in hospital.

Design: An integrative literature review.

Data sources: Cumulative Index of Nursing and Allied Health Literature (CINAHL), Scopus, EMBASE (Ovid), MEDLINE (PubMED), PsycINFO and HeinOnline.

Review method: One author conducted the initial screening of titles, and two authors screened in subsequent rounds for abstracts and full text. The process of making clinical decisions was the outcome of interest. Articles about people with cognitive impairment that did not include dementia, or decisions such as discharge planning or end of life care were excluded. An inductive synthesis of the findings was undertaken.

Results: Nine articles were identified for review and included expert opinion or hypothetical discussion (n=5), cross-sectional survey research (n=3), and qualitative research (n=1). Three themes were identified: capacity for decision-making is conceptualised as 'all or nothing'; there are no universal principles for including people living with dementia in decision-making in acute care settings; and autonomy is recognised but superseded by beneficence.

Conclusions: Contemporary hospital practice is focused on determining capacity for decisions, with an all or nothing attitude to capacity, effectively excluding many people living with dementia from participation in decisions. While there is limited evidence to guide clinicians in this complex and situated process of making clinical decisions, emerging models of supported decision-making require further evaluation in the hospital setting.

Keywords: Autonomy; Beneficence; Decision-making; Dementia; Hospital.