If there was an issue that is dominating the thinking and conversations of policy makers, commissioners and providers of end-of-life care alike, post-pandemic, it is that of inequalities at the end of life.
These were made stark as COVID-19 brought to life the plight of those dying or bereaved from the BAME communities, in care homes, with learning difficulties and more.
And whilst there are regular and welcome publications, conferences and events that seek to explore and redress the experiences of those who are subject to a poor death as a result of an inequitable system or service, there may be some concern about the focus of these efforts and whether they will achieve the long-term change that is required.
St Christopher’s is launching a new conference programme starting on the 12th September 2022 that will explore the bigger picture related to inequalities at end of life.
We don’t know the answers, but we believe that in articulating the scope of the problem and a desired end-state, we might start to glimpse an outline of them.
Our thinking begins with a free half day webinar, entitled “Too little too late”, which considers inequalities at end of life and the related social justice agenda from a broad range of perspectives.
It creates a new frame through which such inequalities can be better understood and addressed.
It is based on the premise that the inequalities that give rise to a poor ending (on the part of the person dying or those left to grieve) do not simply arise as someone faces a diagnosis of a terminal illness or the knowledge that someone important to them will die.
Instead, we suggest that those subject to a poor death or devastating bereavement will have been subject to inequalities for the majority, if not all, of their life.
Many of these are systemic in nature – beyond the individual and often pre-ordained, reflective of historical societal norms, power imbalances and prejudices.
In addition, we suggest that poor health, lack of education, fiscal hardship and social isolation all contributes to how people die, as well as the wellbeing they enjoy during their life.
And the clock starts ticking from the moment that they are born; indeed earlier, as maternal health will have impact for some too.
Our second event – a conference on the 22nd September focused on homelessness will bring some of this to life for this particular group of people who often die too young, in tragic circumstances, and are deeply lonely.
Free places are available to hospices who are interested to participate in conversations about how end of life care is shaped to meet the needs and preferences of people who are street homeless.
We believe hospices could play an important part on redressing some of the suffering that exists for this group of people and want to encourage that.
So, what are some of the solutions that hospices and others might want to adopt?
Yes, access to palliative care and the right medicines makes a difference – as the figure shows.
But it is only part of the picture and is arguably only a small part of the solution.
Supporting broader opportunities around physical, emotional, financial wellbeing much earlier in someone’s life is key to redressing inequalities and ensuring a better ending.
It requires that palliative care services adopt an upstream perspective to their efforts to articulate and help shape responses to poor endings shaped by inequalities. And that the upstream efforts draw in a wide range of players – beyond health, and with a perspective on wellbeing as well as ill-health.
And what of the bigger picture and the future? There is an interesting proposal running through this programme that more equal societies, regardless of who you are, are healthier and happier places for all concerned and so something to which we should all aspire and indeed for which we are all accountable.
So much of this is currently poorly explored in the field of palliative care. Learning with St Christopher’s is an opportunity to redress that.
To know more about the inequalities programme at St Christopher’s contact education@stchristophers.org.uk
More details on all the different events are available at:
Conference on inequalities: Too little Too late conference https://www.stchristophers.org.uk/course/too-little-too-late/
Conference on homelessness: Reaching the forgotten
https://www.stchristophers.org.uk/course/reaching-the-forgotten
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