8 July 2022
Introducing a model of holistic rehabilitative palliative care
Recognising the vital importance of a holistic approach to assessment and interventions on the part of professionals
1 July 2022 witnessed the unveiling of a revised model of rehabilitation in palliative care, prepared by St Christopher’s Hospice in South East London, in recognition of the changes that the COVID-19 Pandemic has brought alongside other shifts in UK society in recent years.
Shaped by allied health professionals, social workers and a nurse, the model recognises the vital importance of a holistic approach to assessment and interventions on the part of professionals looking after people coming to the end of life. As importantly, the model acknowledges the opportunities of engaging the family, carers and the broader community in efforts to enable people to live well until they die by adopting a rehabilitative approach to end of life.
‘All the work of the professional team .. is to enable the dying person to live until he dies, at his own maximal potential performing to the limit of his physical and mental capacity with control and independence whenever possible”.
At its heart is the all-important notion of helping individuals retain or rebuild their personhood – nearly always at risk when someone is coping with the consequences of advancing and life-threatening illness. Their identity and wellbeing is often eroded as their needs for care increase. This model seeks to redress this by focusing on the question of what matters most to them, confident that attention to this helps protect their quality of life.
The model described as “Holistic Rehabilitative Palliative Care” builds on thinking generated some seven years ago when the term rehabilitative palliative care was first coined by Tiberini and Richardson (2015). But it goes back much further – reflecting thinking and ambition on the part of Cicely Saunders who, decades ago, recognised the importance of rehabilitation in the efforts of palliative care professionals. In her own words ‘All the work of the professional team .. is to enable the dying person to live until he dies, at his own maximal potential performing to the limit of his physical and mental capacity with control and independence whenever possible”.
The revised model draws on the emphases proposed by Tiberini and Richardson on proactive approaches to goal setting, attention to function beyond symptoms and opportunities for enablement and self-management in any care provided. Then, it broadens the lens on personhood beyond the physical, acknowledging also the growing breadth and complexity of how personal identity is created and its multi-faceted nature in contemporary society. The model confirms that high quality care is not simply achieved through the nature of the intervention but how it is delivered. In response it emphasises the importance of compassion, connection, partnership and a revised approach to risk in its enactment. The model is situated in a context characterised by an ageing population with post COVID- 19 needs and preferences. How this looks in practice is well described in a short animation here.
At the conference on the 1 July, participants confirmed the view already held by St Christopher’s — that this approach is not new but its integration into the practice of palliative care has never been more important. The next steps are to encourage professionals, regardless of background to adopt the approach in their practice and to find new ways of helping families, carers, friends and neighbours work in a similar way with the person who is in their last phase of life.
We, at St Christopher’s want to help with this. Based on feedback from conference participants we are planning a series of webinars for professionals and some training for those working with volunteers and other community members. We are interested to form a community of practice for those leading rehabilitation services and can offer advice and support to hospices and others interested to enhance their model of care and support through organisation wide culture change and practice development. We can learn a lot together about how best to improve the experience of living and dying through a more holistic approach to maintaining identity and wellbeing of those facing the end of life. Welcome aboard!
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Mum and daughter team Sandra and Sarah Goodwin ran the London Marathon last October, after Sarah’s granddad was cared for at the hospice.
"He was allowed to pass away with dignity and pain free – this is the greatest gift you can give to the family of a terminally ill loved one"
"If people who are homeless aren’t accessing health and social care, they’re also not accessing end of life care and that is our business and our responsibility"
"Coming to the Summer School was a real eye-opener for me. We spent time talking about death and the stigma around it; it made me realise how important it was not to be afraid to talk openly about dying."