Decision-making on behalf of a person with dementia? How do surrogates do it?

Deirdre Fetherstonhaugh1, Linda McAuliffe1, Michael Bauer1, Christopher Shanley2, Elizabeth Beattie3

1 La Trobe University, Bundoora, Victoria 3086 d.fetherstonhaugh@latrobe.edu.au
2 University of New South Wales, Kensington, New South Wales 2052
3 Queensland University of Technology Victoria Park, Kelvin Grove, 4059 Brisbane, QLD, Australia.

As the severity of dementia increases the decision-making capacity of a person with dementia has been shown to decrease. The person with dementia will eventually reach a stage where they are no longer able to make decisions for themselves. At this point, major decisions (e.g. moving into residential care, being transferred to hospital from residential care, consenting to an operation, and deciding on end-of-life care) become the responsibility of someone else, typically a family member or a legally appointed surrogate.

The research reported here explored: how surrogate decision-makers make decisions on behalf of a person with dementia (that is respecting the person’s precedent autonomy or determining their current best interests); whether they feel they need support in making these decisions and; if so, what types of support and means of support delivery are preferred.

The study was informed by Grounded Theory Methodology. Thirty-four semi-structured interviews were undertaken with surrogate decision-makers of a person with dementia (either legally appointed or else recognised as the ‘person responsible’) who had already made a major life decision on behalf of a person with dementia.

A mix of surrogate decision-making methods was reported, and included both the substituted judgement and the best interest standard, which were applied to a range of situations in which a major decision had been made.

Surrogate decision-makers use a variety of ways to make decisions on behalf of a person with dementia most often in the absence of an advance care directive. The research highlighted a need for greater support to assist surrogate decision-makers through what is often a complex and confronting process. This presentation will also discuss recommendations on how surrogate decision-makers of people with dementia can be better supported in their role.


Biography

Dr Deirdre Fetherstonhaugh is the Director of the Australian Centre for Evidence Based Aged Care (ACEBAC) at La Trobe University, Melbourne, Australia. Her research focuses on: the translation and implementation of research evidence into practice; the ethical implications of clinical practice; decision-making in dementia; sexuality and dementia; clinical risk in residential aged care; and the reality of person-centred care. Deirdre is also a member of several human research ethics committees.