End of Life Care, which had sat in the Medical Directorate at NHS England (NHSE), has moved into the Personalised Care Group of Programmes which feels just right. We are failing as a sector if we don’t try to make sure people and their families receive personalised care at such a fundamental point in someone’s life. Choice is a thread running through their programme of work.
Professor Bee Wee took us through the overarching structure this group of Programmes is using. On a population basis the assumption is that around 5% of the population have the most complex needs and will need specialist input. Another 30% will need a targeted offer to meet their needs and the rest are likely to have their needs met by a universal offer. People must be able to move through these categories freely as needs change. This segmentation is an interesting way to look at end of life care and instinctively seemed to chime with what we see in our day to day work. Related to this was some discussion around evidence that earlier intervention saves money by reducing admissions. So targeting care and support for that middle 30% or so might have an impact on the proportion of deaths where there have been 3 emergency admissions in the last 90 days of life. How should the palliative care community respond to this?
So when we use this structure to consider end of life care what should the universal offer look like? Bee suggested 3 things. Firstly, that a person is recognised or identified as having end of life needs and/ or is deteriorating. Secondly that they and their family receive personalised support. Thirdly that they always experience good care, wherever it is delivered. Again I am sure no one would argue with this and of course it is just a slightly different way of describing the Ambitions Framework, which is good news!
Rightly NHSE need to be able to demonstrate progress in this area. It is likely that the measure for end of life care in the NHSE mandate is around increasing the number of people identified as being likely to be or are in the last year of their life. If we don’t identify people who are dying or are likely to die they won’t receive personalised care, according to their needs and preferences, or the support they need. We suggested it would be great to include identifying the needs of carers in the mandate. At Marie Curie we have recently funded some research into the needs and expectations of carers. Not surprisingly it showed that absence of carers or carers too exhausted to carry on will almost certainly trigger a hospital or hospice admission. Interestingly though the research also showed carers had unrealistic expectations of what was available to help them in terms of community and other services. Their expectations were based on, and set by, health professionals who perhaps found it difficult to be totally honest about the reality. This is clearly unhelpful for everyone not least the carers. And I imagine we would all agree that on the whole families and carers have realistic and modest expectations, unless they are led to believe that more is available.
Returning to personalised care there did seem to be some good news from National Voices in that people are reporting improved quality of communications by clinicians, improved involvement in decisions and to feeling more in control. All essential for personalised care. But there is little evidence of planning, coordination or support of families so still a way to go.
Chief Executive, Marie Curie
Delivering high quality end of life care for people who have a learning disability
Developing End of Life Care practice
Electronic Palliative Care Co-ordination Systems (EPaCCS) in England
End of Life care commissioning toolkit
Oxford Learning Pathways
Oxford Learning Pathways (OLPs) are a series of blended learning pathways incorporating e-ELCA. OLPs are a resource for individuals and training facilitators designed to help meet the needs of staff and volunteers involved in providing end of life care to people across a range of settings. The pathways have been developed and piloted by teams of experienced palliative medicine and end of life care professionals and utilise the national e-learning resource e-ELCA.