Picture credit: Getty This inspired me to reflect on the discussions we have with pre-registration nursing students about death and dying. We discuss key factors in meeting the needs of people with learning disabilities, such as care needs of the ageing population, health inequalities, co-morbidities and communication. In their literature review Cavaye and Watts ( 2014 ) comment that the curriculum focuses too little on death and dying, although there are emerging attempts to develop this topic in educational programmes. ‘Part of our role as nurses is to be advocates for people with learning disabilities and provide them with information in ways they can understand’ Paula Hopes Sharing experiences I recently attended a conference on breaking bad news at St George’s University Hospital in London, hosted by Irene Tuffrey-Wijne. A workshop at the conference comprised people with learning disabilities, family members, carers and other professionals. We shared experiences of the death of others, and discussed cancer and the experiences of people with learning disabilities. Amanda Cresswell, who has cerebral palsy spoke of how she felt when her mum died. She described feeling excluded and unprepared, feeling that she had not been listened to in healthcare settings. Yet she had demonstrated that she understood the issues and was even training doctors on communicating with people who have learning disabilities. Having been diagnosed with non-Hodgkin lymphoma, she talked of feeling disempowered in the early stages of her cancer diagnosis. Amanda’s story shows that while some people with learning disabilities are ready to deal with the issues, professionals may not be. There may be a perception that the individual needs to be protected, or fears that people with learning disabilities cannot cope with or understand the information. Amanda sat on a panel with two other people with learning disabilities. All three agreed that someone diagnosed with a life-limiting condition had the right to know about it. Emphasising the importance of clear communication, they discussed telling people with learning disabilities that someone had died using language such as ‘gone’, ‘in a better place’, ‘resting in peace’ or ‘passed away’. Advocate role Part of our role as nurses is to be advocates for people with learning disabilities and provide them with information in ways they can understand so that they can decide for themselves how far to engage with death and the process of dying. This is clearly a huge topic and some professionals said they do not have the skills to tackle such sensitive topics. I left the conference wondering if a learning disability-specific death café could be set up to initiate conversations in a safe way. I have started discussions in some of the placement areas I cover and hope we can take this project forward in the North East. This approach could support nurses to develop confidence in discussing this sensitive and challenging issue.
Learning Disability Practice – Royal College of Nursing (RCN)
Published: Sep 26, 2016