I’ve mentioned before in this blog that the openings of books and stories always seem to remain with me. Whether it’s a simple ‘Once upon a time’, or ‘The clock struck thirteen’, ‘It was the best of times and worst of times’ or the more recent ‘Mr. and Mrs. Dursley of number four, Privet Drive, were proud to say that they were perfectly normal, thank you very much.’ – the opening of a book can stay with you long after you have put the book down- but of course that very much depends on how good the book is in the first place.
What I struggle with is in all honesty remembering any final lines. There is of course, ‘They all lived happily ever after’ but despite attempts to talk up the endings most are forgotten – unless the ending is a poor one – that we do remember.
This past week I was pleased to attend the launch of ‘Every Story’s Ending’ which is in my view probably the singular most important work on palliative and end of life care to come out of Scotland in many years. The report comes from the Scottish Partnership for Palliative Care and is the output of hundreds of conversations, insights and reflections on the essence of palliative care and why it is so important for a society. It has about it the spirit of those conversations in its narrative, honesty and depth. It is a fairly long report but please read it because it will return the effort twelve-fold. The report has loads of practical recommendations which are rooted in sense and experience.
We put so much energy into planning birth and entry into life but so little in thinking or planning around our death and departure. But the way we end our story is as critically important as what comes before not only for ourselves but for those we leave behind.
In considering the report for me inevitably what it says about social care is especially important. That section starts with a wonderful quote from Annie Gunner Logan which describes well the distinctiveness of social care and why it has to be considered as central and intrinsic to all attempts to foster and improve wellbeing and health.
“What we [social care] do is get alongside people when they have very significant challenges in their lives and struggle to participate in society as full citizens, and we support them, wherever possible, to make their own decisions and move their life forward as best they can. Where the world makes it very difficult for people to do that because of their age, impairment or whatever, we do what we can to help by ensuring that they are comfortable, are cared for and can have at least some kind of independence and peace of mind in their individual circumstances.”
Annie Gunner Logan Director of the Coalition of Care and Support Providers in Scotland (Health and Support Committee Inquiry into Social Care)
That is a description which shows the potential of social care to enable the individual and wider community to achieve the fulness of life and purpose that they want and desire. Sadly, in the debates I have seen and heard in the media this past week as England and the UK Parliament has considered social care funding there has been a palpable lack of real understanding of what social care is and its potential. It has been very much about the NHS and looking at social care through an NHS clinical and acute sector lens. This has sadly missed the whole point. The debate has been about cost and deficit, need and limitation rather than potential, autonomy, control, and choice. Good social care allows an individual to achieve to their fullest potential and perhaps that is especially the case where social care supports the flourishing of the person at end of life and through effective palliative care and support.
The report highlights many of the challenges facing social care if it is to enable people who want to die at home or in a homely setting to achieve their wishes without unnecessary and unscheduled admission to hospital in the last months and year of life including the need to reform commissioning, increase financial investment and better train and support the workforce. The recommendations are self-evidentially implementable.
But this past week has also seen other work not least a commitment in the Programme for Government to the creation of a new Palliative and End of Life Care Strategy and also further work in the development of a new Human Rights Act for Scotland.
We are with all these changes and initiatives at a point of real potential and opportunity. For those of us who have worked in palliative and end of life care for many years there has been a desire to create systems and models, supports and structures, relationships and freedoms, which enable people to end their life in a way which upholds their choice and dignity, supports them and their families and friends, and ensures that we become the best nation in which to end one’s life such is the quality of palliative and end of life care support.
I have written elsewhere about how this can all be encapsulated if we have the dream and ambition within our social care and human rights legislation to declare clearly that citizens in Scotland should have a ‘human right to palliative and end of life and bereavement support.’ Scotland has the legislative, policy and practical opportunity to become the first nation to enshrine such a right within our society and community. It is an opportunity which should not be lost.
Death and dying is part of everyone’s story but the way we support and care for that ending is something which is unwritten. We face the challenge to make sure that everybody’s ending tells the story of a society that enshrines the rights of choice, dignity, respect and humanity. And if it does that will be a final sentence worthy of remembrance.
The End
Not every man knows what he shall sing at the end,
Watching the pier as the ship sails away, or what it will seem like
When he’s held by the sea’s roar, motionless, there at the end,
Or what he shall hope for once it is clear that he’ll never go back.
When the time has passed to prune the rose or caress the cat,
When the sunset torching the lawn and the full moon icing it down
No longer appear, not every man knows what he’ll discover instead.
When the weight of the past leans against nothing, and the sky
Is no more than remembered light, and the stories of cirrus
And cumulus come to a close, and all the birds are suspended in flight,
Not every man knows what is waiting for him, or what he shall sing
When the ship he is on slips into darkness, there at the end.
“The End,” © 1990 by Mark Strand from The Continuous Life by Mark Strand.
Donald Macaskill
