UCC School of Nursing and Midwifery Annual Report 2019

Catherine McAuley School of Nursing and Midwifery, UCC

End-of-Life Care Supports and Decision-Making Practices in Specialist Intellectual Disability Residential Services

It was also found that people with an intellectual disability were not involved in making end-of-life decisions, mainly because the individuals involved were very ill by the times these decisions were made. In these instances, a relational approach to autonomy was evident as both families and staff, independently and collectively, drew on their knowledge of the individuals, to make, to the best of their ability, the right decision for the person, at that time. The findings of this study indicate that it is imperative that an advance care planning approach to is developed within specialist services to ensure the autonomy of people with an intellectual disability is protected and promoted when making end-of-life decisions.

In November 2019, Dr Caroline Dalton completed her PhD research on End-of-Life Care Supports and Decision-Making Practices in Specialist Intellectual Disability Residential Services. A case study approach was utilised to identify how nine people with an intellectual disability were supported in the final two years of their lives. This study identified that families and staff in specialist intellectual disability services were committed to supporting people with an intellectual disability at end of life, and to providing services, which allow them to “age and die in place”. However, issues arose in relation to the provision of end- of life care at organisational and individual levels. These issues included a lack of preparedness in both specialist ID residential services and acute hospital settings to support people with an ID at end of life.

PhD Student: Caroline Dalton

PhD Supervisors: Dr Joan McCarthy, Dr Nicola Cornally

Examiners: Professor Sheila Payne, Lancaster University; Professor. Irene Tuffrey-Wijne, University of London; Professor Eileen Savage, University College Cork.

Pictured left (l-r): Dr Joan McCarthy; Professor Eileen Savage; Dr Nicola Cornally; Caroline Dalton (School of Nursing and Midwifery, UCC); Professor Sheila Payne, Lancaster University; Professor Irene Tuffrey-Wijne, University of London.

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