‘What does personalisation look like at end of life care?’ asks Helen Sanderson
The last time I blogged for Nursing Times, Palliative Care Manager Philip Ball and I looked at lessons learnt from the Liverpool Care Pathway (LCP) and its review. The challenge that we set ourselves was to answer the question of how we can deliver personalised support at end of life in a way which builds on these lessons, and addresses the recommendations.
‘Ways and means’, a report by Demos and supported by Sue Ryder, explores the service journey at the end of life. Too many people are not given the opportunity to discuss how and where they’d like to be cared for in their last few months and days of life according to this report, and an overwhelming majority of hospice users said they had only ever discussed what they wanted with family and friends. This means that many people were unsure whether the health professionals supporting them at the end of their life knew or had recorded their wishes.
These findings, together with the larger social implications of an aging population and a growing demand for end of life care, highlighted the need for a tool that could be used by health and social care professionals as well as family carers, to support people thinking about, and planning for the end of life.
We wanted to answer the questions “What does personalisation look like at end of life care?” And to do this we worked with Sue Ryder and partners from Hull City Council and St Ann’s Hospice, to produce the latest in the Progress for Providers series; end of life self-assessment tool.
The tool shows what good end of life care should look like through a series of comprehensive and evidence-based prompts and suggestions. It supports professionals and family members to check that the care they are providing is tailored to the needs and wishes of the person in their anticipated last year of life. It also supports the user to see how they can develop, improve and measure their current care provision.
We know that personalisation in end of life care is not a new concept and in fact it is a vision shared by anyone working in end of life care who cares deeply about people living well at this time. We also know from the ‘Ways and means’ report that it isn’t easy to achieve either. This tool facilitates the assessment of existing person-centred practices and helps introduce new ways to achieve personalised care.
I recently received some feedback from Sally Percival, a woman I worked closely with when producing the ‘Living Well’ booklet. Her insight into what the Progress for Providers self-assessment tool can achieve reinforces my belief that this really is a way of delivering personalised support at end of life.
‘I’ve just read the new progress for providers tool and it “blew me away” this is the kind of support tool, that if used with the living well booklet, will change people’s end of life experience and would have absolutely changed my mother’s time spent in the care home and as a family we wouldn’t have spent months feeling guilty about the standard of care and support she received. This tool not only addresses the whole person but the whole family and community situation which makes sense. This isn’t astrophysics it’s just how we would all want to be supported, with kindness, dignity and respect of a person’s life as a whole. This is definitely a tool I will be ensuring is read by my mother’s current provider. “
By keeping the person who is at the end of their life’s needs at the forefront rather than focusing on a general end of life care method or pathway, we can ensure that we are fulfilling their wishes, and they and their family can be sure that they will absolutely retain their choice and control.
Progress for Providers is available to download free.