Abstract

ObjectivesTo investigate whether life-sustaining measures in medical emergency situations are less accepted for an anticipated own future of living with dementia, and to test whether a resource-oriented, in contrast to a deficit-oriented video about the same demented person, would increase the acceptance of such life-saving measures.DesignExperimental study conducted between September 2012 and February 2013.SettingCommunity dwelling female volunteers living in the region of Bonn, Germany.Participants278 women aged 19 to 89 (mean age 53.4 years).InterventionPresentation of a video on dementia care focusing either on the deficits of a demented woman (negative framing), or focusing on the remaining resources (positive framing) of the same patient.Main outcome measuresApproval of life-sustaining treatments in five critical medical scenarios under the assumption of having comorbid dementia, before and after the presentation of the brief videos on care.ResultsAt baseline, the acceptance of life-sustaining measures in critical medical situations was significantly lower in subjects anticipating their own future life with dementia. Participants watching the resource-oriented film on living with dementia had significantly higher post-film acceptance rates compared to those watching the deficit-oriented negatively framed film. This effect particularly emerges if brief and efficient life-saving interventions with a high likelihood of physical recovery are available (eg, antibiotic treatment for pneumonia).ConclusionsAnticipated decisions regarding life-sustaining measures are negatively influenced by the subjective imagination of living with dementia, which might be shaped by common, unquestioned stereotypes. This bias can be reduced by providing audio-visual information on living with dementia which is not only centred around cognitive and functional losses but also focuses on remaining resources and the apparent quality of life. This is particularly true if the medical threat can be treated efficiently. These findings have implications for the practice of formulating, revising, and supporting advance directives.

Highlights

  • Persons suffering from dementia experience progressive limitations in their cognitive and decision-making capacity

  • Anticipated decisions regarding life-sustaining measures are negatively influenced by the subjective imagination of living with dementia, which might be shaped by common, unquestioned stereotypes

  • This bias can be reduced by providing audio-visual information on living with dementia which is centred around cognitive and functional losses and focuses on remaining resources and the apparent quality of life

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Summary

Introduction

Persons suffering from dementia experience progressive limitations in their cognitive and decision-making capacity. Their ability to make autonomous and informed decisions will be lost [1,2,3]. The protection of the autonomy of a person in a state of incompetence for medical decisions is a moral demand— as medical decision-making is traditionally based on the medical judgement of a physician and/or the wishes of relatives who consider themselves to be the guardian of the patient [5]. Stimulated by the UN convention, the priority is increasingly allocated to the autonomy of a person, even if she/he is in an incompetent state

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