What are we planning, exactly? The perspectives of people with intellectual disabilities, their carers and professionals on end-of-life care planning: A focus group study

Sage Palliative Medicine & Chronic Care

This episode features Richard Keagan-Bull (Faculty of Health, Science, Social Care and Education, School of Nursing, Allied and Public Health, Kingston University London, London, UK).

What is already known about the topic?

• Deaths of people with intellectual disabilities are often unanticipated, unplanned for and poorly managed.
• Service providers in residential settings are at the forefront of supporting people with intellectual disabilities at the end-of-life, but staff lack skills, knowledge, confidence and support within the area.
• In order to develop end-of-life care planning interventions that are welcomed by people with intellectual disabilities, their families and support staff, it is important to understand their perspectives, preferences and needs for end-of-life care planning.

What this paper adds?

• Participant perspectives provided a detailed view of end-of-life care planning involving four areas ([i] funeral planning, [ii] illness planning, [iii] life planning and [iv] talking about dying); what area participants focused on affected their views on whether, when and with whose input they thought end-of-life care planning should happen.
• Barriers to end-of-life care planning with people with intellectual disabilities included: reluctance to consider death and dying, with a preference to focus on ‘planning for living’; issues around understanding and communication; not knowing how to initiate conversations; dying being an abstract concept; and lack of staff training.
• Planning for illness (the last phase of life) was particularly abstract and difficult to do in advance.

Implications for practice, theory, or policy

• The definition of end-of-life care planning may be ambiguous, particularly for non-healthcare professionals. It should be clear what is meant and understood by people when using the term.
• The development of future interventions, resources and approaches for end-of-life care planning with people with intellectual disabilities should address the need for clarity around what is being planned for.
• Intellectual disability staff need help and guidance in knowing when and how to initiate the topic of dying and end-of-life care planning; reframing aspects of end-of-life care planning as ‘planning for living’ rather than ‘planning for dying’ and collaboration with palliative care professionals may help address barriers.

Full paper available from:

https://journals.sagepub.com/doi/full/10.1177/02692163241250218

If you would like to record a podcast about your published (or accepted) Palliative Medicine paper, please contact Dr Amara Nwosu:

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