SAGE Palliative Medicine& Chronic Care   /     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

Description

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:  a.nwosu@lancaster.ac.uk