How do general end-of-life treatment goals and values relate to specific treatment preferences? a population-based study

Abstract

Background: There is a lack of research on the relationship between general end-of-life goals and values and preferences for specific life-sustaining treatments.

Aim: To examine agreement between Dutch older people's general end-of-life goals and specific life-sustaining treatment preferences.

Design: Participants identified general end-of-life goals in an interview and preferences for four life-sustaining treatments in hypothetical cancer and dementia scenarios in a separate questionnaire. Agreement between general goals and specific treatment preferences was calculated.

Setting/participants: In total, 1818 older people from 11 representative Dutch municipalities participated in the study.

Results: In total, 1168 (response rate 73%) answered questions on general end-of-life and specific treatment preferences. Agreement between a desire to live as long as possible, irrespective of health problems, and a preference for life-sustaining treatments ranged from 51% to 76% in cancer and 41% to 60% in dementia scenarios, depending on the treatment. Agreement between a desire for a shorter life, if without major health problems, and a preference to forgo treatments ranged from 61% to 79% in cancer and 75% to 88% in dementia scenarios.

Conclusion: For a sizable minority of participants, specific treatment preferences did not agree with their general end-of-life goals. The more frequent desire to forgo treatments in case of dementia than cancer suggests that physical deterioration is more acceptable than cognitive decline. The findings underline the importance of discussing general care goals, different end-of-life scenarios and the risks and burdens of treatments to frame discussions of more specific treatment preferences.

Keywords: Life support care; advance care planning; advance directives; decision-making; health communication; palliative care.