How Well Do People with Dementia and their Family Carers Agree on Preferences for Life Sustaining Treatments at End of Life? A Pilot Study

Aims: Advance Care Planning may support the consideration of the wishes and preferences of people with dementia (PWD) when making end of life care decisions. However after the PWD loses capacity, it is often left to a family carer to indicate what these might have been. We will examine how well carers can predict the choices that the PWD would make and the accuracy of proxy decisions is unclear. Study Design: Cross sectional study using interviews with PWD and their carers in two NHS Trusts in the UK. PWD had an MMSE range of 20-30, mental capacity and an identified family carer. Carers were next of kin or “key decision makers”. The Life Support Preferences Questionnaire (LSPQ) with 3 health scenarios and 3 treatment options was used and levels of agreement calculated; PWD identified their preferences against 3 health care scenarios and carers predicted what the preferences of the PWD would be. Analysis: Descriptive statistics and Kappa Coefficient (κ) for agreement. Results: Twenty five dyads (25 PWD & 25 carers) were interviewed using the LSPQ. The mean age of PWD=80.6, range 69-93; Carer=66.2, range 47-90. MMSE of PWD (Mean 25.2; range 20-29), Gender PWD (M=12; F=13), Carer (M=5; F=20). A wide range of ethnic backgrounds were represented and levels of education. Most agreement was found on rating current health state on LSPQ. Of all health scenarios, lowest agreement was found for resuscitation and tube feeding had the lowest levels of agreement in treatment choices. Scenario 2 (stroke and coma) showed low agreement (κ .332; P=0.052). Scenario3 (advanced cancer) showed moderate agreement (κ .478; p= 0.005) treatment issues. Conclusions: Whilst this pilot is underpowered it suggests that carers may not be able to consistently predict the treatment preferences for PWD. No participants have been distressed by discussing these issues. We will now extend to a full study with 100 dyads and also examine contextual factors that influence agreement