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Hospice UK annual conference 2016- Day 3

Author: Suzanne Stevenson
21 November 2016

The life-enhancing benefits of rehabilitative palliative care and the valued contribution by hospices to volunteering supported by the end of life social action fund were among the highlights of the final day of Hospice UK’s annual conference in Liverpool.

Dr Gail Eva, of the Department of Clinical Sciences at Brunel University, gave an insightful presentation entitled “On maintaining identity and value during advancing illness,” which explored how rehabilitative care helped people with life-limiting conditions to “live life to the full”.

She began by comparing the traditional model of disability - which views on this as a problem to be fixed or palliated and focuses on what an individual  cannot do – with the social model which centres on addressing social and attitudinal barriers to everyday life for someone with a life-limiting condition.

Rehabilitative palliative care takes its lead from the social model,  focusing on what people with life-limiting conditions need, and indeed want, to do, seeking to tackle the barriers they face and supporting them to achieve their goals.

Dr Eva shared some powerful, contrasting stories of how occupational therapists saw two very different  patients “Gill” and “Eddie”, highlighting how someone’s story is not just an account of events, it is also about how other people receive or view  it.

 For example, Gill was highly organised and a good problem-solver which influenced care staff to view her as very capable, while with Eddie there was a tension between his view of himself and theirs. Staff rejected Eddie’s account of himself and his capability so that when he went home from hospital he rejected further support.

Dr Eva emphasises the importance of “listening generously” for care professionals. She urged them to ask themselves key questions to inform their approach to patients such as: “what is important to the patient? What is possible? What are my assumptions about what is possible?. What is the person saying about their sense of themselves?”.

She said it was vital to focus on what mattered to the patient and what it represented to them to enable people’s participation in achieving their goals.

Dr Eva noted that hospices were excellent at ensuring dignity in care, providing personalised care with continuity and generally focusing on living well. However, she observed that sometimes they were too focused on patients as “recipients of care” and needed to do more to help develop people's strengths and what they could do, so they  could live “fulfilled lives”.

“The question we need to ask isn’t what’s the matter with you?- but rather what matters to you?”, she said, noting that care in general needed to match patients’ goals and aspirations.

“The most valuable outcome for rehabilitative palliative care might be possibilities or feasibilities, rather than specific achievements.”.

In the afternoon delegates at the conference were treated to a preview of the uplifting and very moving Christmas single by the London Hospices Choir single with their cover of “The Living Years,” lead by Paul Carrack from Mike + The Mechanics, who was also lead vocalist on the original 1991 hit.

During the closing session of the conference, Mark Fisher, CBE, Director of the Office for Civil Society and Innovation at the Cabinet Office, spoke about hospice volunteering supported by the End of Life Social Action Fund.

The fund - which has since ended - supported volunteer-based social action projects to improve the experience for people at end of life and their families.

Several hospices were involved including St Joseph’s in east London, Peace Hospice in Watford and St Michaels’s in Harrogate whose volunteers offered varied support including befriending, respite for carers and practical support.  

An evaluation of the end of life social action fund was published earlier this month.

Mr Fisher praised the work of hospice volunteers, saying they helped improve quality of life for dying people and described  the type of volunteering supported by the fund as “transformational for the system as a whole, as well as for the person doing the caring.”    

Copies of the conference presentations are available on the Hospice UK website.
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