60. Life story work in the context of palliative and end of life care

What is the place of life story work in palliative and end of life care for people with learning disabilities? I have been pondering this question since attending the Life Histories in Mind: Mental Ill Health and Learning Disabilities in Context conference at Manchester Metropolitan University a few days ago. This was a refreshingly small but perfectly formed event, bringing together scholars, practitioners and activists from a range of disciplines including history, politics, museum studies, visual arts and applied health and care. We connected through a shared interest in how narratives can shed light on experiences of mental health and learning disability – serving both as analytical tools but also mobilisers for change.

A panel convened by Noelle McCormack, Nathaniel Lawford, Owen Barden and I explored how life histories can illuminate love and loss in lives of people with learning disabilities. I reflected on the potential of more/enhanced life story work with people with learning disabilities given emerging findings on the DAPPLE project. While the period leading towards the end of life is undoubtedly characterised by loss, it can also be a time of intense love, remembering, attentiveness and togetherness. We saw this evidenced very clearly in the experiences of Victoria Willson and Stuart Hasler who inspired the Victoria & Stuart project. But DAPPLE is revealing a more ambivalent and complex picture. In some of our research it seems the person is barely known to those who are providing care at this most critical time. While physical symptoms may be ‘well managed’, attention to people’s social and emotional lives is sometimes lacking.  Relationships can appear transactional and fragile. It is important to emphasise that DAPPLE’s ethnographic researchers are also witnessing the counter to this: conscious, careful and thoughtful engagement with a person’s life story; knowledge that shapes support workers’ actions and interactions with the people they are caring for on a daily basis.  

There are numerous intersecting factors shaping the quality of care that people with learning disabilities receive at the end of their lives. I wouldn’t want to overplay any single element here, particularly as we have not yet completed our fieldwork. But caring for someone with an understanding of their whole life is surely key. This connects to the arguments made in Sara Ryan’s book on erasure and social murder, that narrative humility – listening to people and learning about their lives – is the first step in addressing the systematic devaluing of people with learning disabilities in society. This raises philosophical but also practical questions for health and services providing care to people at the end of their life: how can they support staff to be curious about a person’s history? How might knowledge of this history inform the support someone receives when the end is in sight? And how might a person’s story be drawn upon to ensure that the end of life is a time full of love, alongside supporting people to navigate loss in its various forms? 

Narratives are emerging as significant for DAPPLE in many interesting and unexpected ways. Facilitating knowledge and understanding of a person’s life story in the context of palliative care is certainly an area that requires close attention as we enter this final year of the DAPPLE project. 

Written by Liz Tilley, Professor of Learning Disability Studies at the Open University.