Advance care planning and end-of-life care

Planning ahead, and having an advance care directive in place, can inform decision making and ensure the person’s care preferences are taken into account. For general advice on advance care planning, see the Palliative care guidelines. Care in their usual place of residence should be a priority for people with developmental disability, to maintain familiarity and minimise distress; see also Support for ageing in place.

Important aspects of advance care planning for people with developmental disability include:

• capacity considerations and support needed to document preferences; see also Capacity, consent and decision making
• ensuring preferences are up to date and accessible (eg via a personal health record) and a copy is held by the person’s general practitioner
• accessibility of information and other reasonable adjustments
• working with family, carers and support people
• specific pain assessment and other tools for those who have difficulty communicating symptoms; see Pain assessment tools and Communicating with people with developmental disability
• minimising potential distress and trauma from interventions; see Trauma related to medical care and Trauma-informed care
• support for other people with developmental disability who may be affected (eg housemates); see also Bereavement support.

‘Talking End of Life...with people with intellectual disability’ (TEL) is an Australian initiative to help practitioners and support people talk about death and dying with people with intellectual disability (including making plans for it if they choose).

New South Wales Department of Health has ‘easy read’ information about palliative care and death and dying.

The Australian Better Health Channel also has advice on end-of-life care for people with disability.