by Ally Paget
Concerns about quality and capacity in our healthcare system have moved up the news agenda to the front page. Over the past year in particular, we’ve seen a move from a narrative in which particular groups (those with diabetes, those with dementia, etc.) are poorly served, and where ‘future generations’ are predicted to suffer a lower standard of care, to one that is more urgent and more universal.
In the past few months, we have heard about the inadequacy of out of hours care (used by around 1 in 10 of us each year), and of A&E departments (used by 3 in 10 of us each year). Few needs, though, can be more universal than the need for end of life care. Of the roughly 470,000 of us who die in any one year, 75 per cent will need end of life care (the rest are those whose death is sudden, or otherwise unpredictable).
End of life care encompasses all services from the point people are ‘diagnosed’ as dying, up until death itself. This includes relief of their medical symptoms, care and help at home, and practical and emotional support for both the individual and their family. Ways and Means, the Demos paper published today, looks at this end of life care ‘journey’ from the patient’s perspective. The findings reveal an unacceptable level of variation in the kind, timeliness and quality of support that patients receive in the months, weeks and days before death. Rather than being governed by a patient’s preferences, journeys through the health and care systems depend on a complex interaction of circumstances – an individual’s diagnosis, how early on they were identified as dying, their ethnicity, their history of social care use, and how services are commissioned in the place where they live.
Not only is service provision unequal, its workings are also impenetrable to the average user. GPs and hospital doctors alike are ill prepared and poorly supported to broach discussions about dying with their patients, which makes it less likely that people will receive timely and appropriate support, and inhibits patients from having a say in their care.
Ways and Means outlines the changes that need to happen across the board – to both supply (in terms of capacity, co-ordination and equality of access) and demand (in terms of open discussion and informed choice). Making social care free at the end of life and integrating it with health should reduce the disruption and inequity that currently result from the two running in parallel. Ensuring that dying is ‘diagnosed’ early across conditions and investing in training for communities in providing informal care to the dying should both open up choice and access to quality care for individuals with different conditions and from different backgrounds. Most importantly, medical practitioners – and GPs in particular – need to be fully recognised as the ‘gatekeepers’ of end of life care. Where they have the competence and confidence to communicate with patients about dying, they can mean the difference between a ‘good’ and a ‘bad’ service journey.
As anyone who has supported a friend or relative at the end of life will know, death and dying bring in their wake a daunting list of decisions to be made. Sorting out the dying person’s finances is just one example. The process of settling one’s financial affairs will work differently for different individuals, but there are a finite number of things to be done, guidance is available, and there is less of a taboo surrounding discussing it. Ideally, the process of navigating the end of life care journey should look a lot more like this – a more transparent process, where the patient is well-informed and supported by experts, but which has the flexibility to accommodate individual circumstances and preferences (including where these change).
More than any of our other interactions with health and care, end of life care services are the ones we should most expect to need. Their sheer universality should give them an advantage in terms of how they are planned and delivered. Currently, the reverse is true. Shrouded in complexity, and hampered by an unwillingness on all sides to discuss death, the end of life service journey is not easy to navigate. Ways and Means suggests how we can make the journey to death, if never as predictable as we might wish, at least a ‘known unknown'.