Comment

Talking about death and dying

We must ensure nurses are better prepared for difficult conversations with people who have learning disabilities, says Paula Hopes.
Death and dying

We must ensure nurses are better prepared for difficult conversations with people who have learning disabilities, says Paula Hopes.

Since moving into lecturing I have become interested in discussions about death and dying. Last year at a conference organised by Tracey Lloyd, Waless first Macmillan specialist nurse for learning disabilities, I heard lecturer Stuart Todd discussing where people with learning disabilities are when they die.

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) reflected criticisms that the curriculum has a limited focus on death and dying, although there are emerging attempts to develop this topic within programmes.

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We must ensure nurses are better prepared for difficult conversations with people who have learning disabilities, says Paula Hopes.

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Since moving into lecturing I have become interested in discussions about death and dying. Last year at a conference organised by Tracey Lloyd, Wales’s first Macmillan specialist nurse for learning disabilities, I heard lecturer Stuart Todd discussing where people with learning disabilities are when they die.

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) reflected criticisms that the curriculum has a limited focus on death and dying, although there are emerging attempts to develop this topic within programmes.

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 death, 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 had understanding of the issues – she was even training doctors on communicating with people with learning disabilities.

Having being diagnosed with non-Hodgkin lymphoma, she talked of feeling disempowered in the early stages of her cancer diagnosis.

Challenging perceptions

Amanda’s story shows that while some people with learning disabilities are ready to deal with the issues, professionals might not be. There may be a perception that the individual needs to be protected or fears that people with learning disabilities will be unable to 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.

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 those with learning disabilities and provide information in a way 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 felt that they did 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.

Reference

Cavaye J, Watts JH (2014) An integrated literature review of death education in pre-registration nursing curricula: key themes. International Journal of Palliative Care. Article No: 564619.


About the author

Paula Hopes is senior lecturer in learning disabilities nursing in the School of Health and Social Care at Teesside University in Middlesbrough

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