Advance care planning in people with intellectual disabilities, more than 'to resuscitate or not to resuscitate': A qualitative interview study with general practitioners and family caregivers.

Abstract

Background: Advance care planning for people (ACP) with intellectual disabilities requires timely and carefully communication between family caregivers and general practitioners.

Objectives: Despite its recognised importance, little is known about how these stakeholders experience advance care planning and decision-making processes, particularly regarding goals of care and do not resuscitate (DNR) orders, highlighting a critical gap in ensuring person-centred palliative care for this population.

Methods: A qualitative design was used to investigate how Belgian general practitioners and family caregivers of adults (≥18 years) with moderate to profound intellectual disabilities (IQ ≤ 50) approach and experience decision-making about treatment goals and DNR directives. The data were analysed thematically.

Findings: Interviews with six family caregivers and five general practitioners identified six themes: limited preparedness for ACP, the need for open discussion, communication challenges, involvement of key stakeholders, timing, and positive outcomes. Participants reported limited ACP knowledge and a need for earlier, broader conversations that extend beyond DNR decisions. Emotional barriers, uncertainty, and concerns about discussing end-of-life care too early often delayed ACP. Family caregivers generally expected GPs to initiate discussions, while both groups emphasised multidisciplinary involvement and timely, proactive conversations. Despite challenges, ACP discussions were often experienced as reassuring and helpful.

Conclusions: ACP for adults with moderate to profound intellectual disabilities is shaped by knowledge gaps, communication barriers, and uncertainty about timing. Early, proactive, and multidisciplinary approaches that address personal values alongside treatment preferences may support person-centred decision-making and improve experiences of end-of-life planning.