By Karen Taylor, Director, Centre for Health Solutions
Every year, Dying Matters Awareness Week is used to encourage people to talk, in whatever way, shape or form works for them. This year, the week is being observed from 2 - 6 May, and the theme is being ‘#InAGoodPlace’ to talk about death, dying and grief.1 Over the past ten years I have written several blogs in support of Dying Matters week highlighting the importance of talking with your loved ones about death and dying and, stressing that ‘being in a good place’ covers physical, emotional, financial and spiritual considerations, as well as being able to access the right care and support. Last year, however, I suffered the sudden and unexpected loss of my husband and while no amount of talking beforehand would have helped ease the shock and grief, if we’d had some discussions about wishes and wants it might have eased some of the difficulties encountered. More importantly, being able to talk about ‘dying’ and ‘loss’ in the days and months afterwards has proved invaluable. This week’s blog is my testament to ‘Dying Matters’ week and why it’s important to talk.
These past two years have been traumatic for many people who have lost loved ones prematurely due to COVID-19. While some may have been at the end-of-life, the way they died wasn’t how anyone would have planned it, and for many others the suddenness of the deterioration, and the impact of lockdown and social distancing, meant those conversations didn’t take place. Moreover, no one can have missed the media coverage of how devastating the experience has been for so many families. And today we have the dreadful situation in the Ukraine, with indiscriminate loss of life where, again, no amount of talking could lessen the pain, nor help in understanding the tragedy that is unfolding. I therefore struggled to think of what to write, or even whether to write this blog.
However, last month, my nephew published a memoir, ‘Don’t Put Yourself on Toast’ which recounted his and his family’s experience of the drawn out death of his father, my ‘larger than life, and much loved’ brother-in-law.2 I was scared to read the book but, while I cried a lot, I also laughed at the insightful descriptions of living with someone you loved desperately but who you know is dying. As the book notes, the memoir demonstrates so poignantly how the power of humour, laughter and especially talking about a good death can provide ‘sustenance, comfort and hope even in our darkest moments’. I will leave you to judge that for yourself should you wish to read it, but there are two things that stood out for me that I want to highlight.
The first is that ‘Strength around death doesn’t have to mean bravery, hushed voices, and unending patience. It can be loud, and you can tease, perform, prod, prank, sing, tickle, and do anything that occurs to you to bring the fun back into someone’s life. Because if you have the strength to shine light into the dark moments you can provide solace’. The second is my nephew’s reflection on the legacy of the experience he and his family went through and his observation that while he could have been crushed by the unceasing weight of the experience, he has morphed into someone stronger, someone older, and that helped him say what he needed to say and accept what was to come.
He goes on to say that he ‘cannot comprehend the strength of others who are not afforded the luxury of time’ and that given the choice between dying the way his father did or vanishing overnight in say a car crash, he’d choose brain cancer every time. Furthermore, that he knows that he’s being inherently selfish, especially when thinking about ‘his dad, what he endured, the false hope, the goodbyes, the nights alone with his thoughts and his quiet hysteria that arose when reminded that his life was ending’. He felt certain he would have taken the crumpled-metal option.
Therein lies the conundrum, I’ve experienced the other ‘option’, a massive heart attack while driving to pick up my daughter to go for an urgent ante-natal appointment. The shock is unbelievable, but imagine what could have happened if my eight months pregnant daughter had been in the car which would have been only 10 or so minutes later. The disbelief and grief is indescribable and the days afterwards a blur, but with so many things to do. My children devastated by the event but trying to be strong for me, my friends support unwavering, and continue to provide a tremendous help, while some were afraid to talk to me, others simply let me talk. And therein lies my main message - the importance of being able to talk, then and ever since, about a life ended too soon but a man who will live on in his family’s hearts, and more, provided they are able to talk.
So Dying Matters week really does matter, it highlights the importance of talking about what it means for ourselves and our loved ones to be in a good place to die – stressing again that this includes discussions about the end-of-life care wishes but also the emotional, financial and spiritual, situation. However, we know that right now people are dying without the support they need. Since the start of the pandemic, it is estimated that almost 70,000 people have died at home without access to specialist care. The past two years have accelerated this issue like never before and it needs addressing urgently.3
With the pandemic far from over, the UK is still struggling with big questions about how and where people should die, who can be with them at the end, and what care and support will be available?
The evidence is clear that right now many people are dying without the emotional and practical support they need. Many more people are dying at home than before the pandemic, which could be the right thing, however, while health and social care staff are doing their best in the hardest of circumstances, they often finding themselves without the specialist knowledge or capacity to look after dying patients and provide the level of support needed by their families.4
I have written a number of reports about end-of-life care, from my first report in 2008 while at the National Audit Office5 to a report for Deloitte in 2014 on Transforming care at the end of life: Dying well matters.6 Both highlight the significant variations in the standards of care and the need to provide more effective and compassionate care at the end-of-life. However, end-of-life care and dying remain very much a taboo subject - a perception that needs to change. The public need to be encouraged to discuss death and dying as early and as naturally as possible which will create demand for better services and an ability to plan for good quality care. However, ultimately, the real transformation will come from talking and especially listening to stories, changing the conversation about death.
While I thought this blog would be difficult to write, it wasn’t, although I guess that for some it might be difficult to read. However, by talking about dying and grief, we remove the taboo and stigma that have surrounded these topics for far too long. Talking can help us better understand what’s happening to our friends, our colleagues and in our communities and will help change attitudes and ultimately services to support people and their families at the end of their lives, however and wherever that end occurs.