surrogate decision maker

Surrogate decision makers (SDMs) are challenged by difficult decisions at the end of life. This becomes more complex in young adult patients when parents are frequently the SDMs. This age group (18 to 39 years old) commonly lacks advanced directives to provide guidance which results in increased moral distress during end of life decisions. Multiple factors help guide medical decision making throughout a patient's disease course and at the end of life. These include personal patient factors and SDM factors.

Many people living with dementia eventually lose the capacity to make their own decisions and will rely on another person – a surrogate decision maker – to make decisions on their behalf. It is important – especially with the increasing prevalence of dementia – that the role of surrogate decision maker is understood and supported. This qualitative study explored the experiences of 34 surrogate decision makers of persons living with dementia in Australia. Face-to-face and telephone interviews were conducted over six months in 2014.