In Children’s palliative care, as in adult palliative care, we are acutely aware of myths circulating about palliative medicine and hear a multitude of barriers to referrals from both families and professionals. We all continue to work hard to deliver excellent care and to try to educate people about what palliative care is and how helpful and empowering it can be. How can we address these myths and barriers?
Over my career I have worked my hardest for every one of my patients and their families and whilst I won’t have got everything right, I have always tried to treat people as I would want my own family treated, with respect, with careful listening and understanding, managing expectations, improving symptoms as best I can. I really hoped that by doing a good job and role modelling palliative compassion and expertise, this would improve things. It has to some extent. As my career progressed though, I realised I needed to help educate other professionals across the country and overseas, to reach children outside of my own place of work, to spread the power of good palliative care and enhance quality of life for a larger number. I have loved my work in teaching, curriculum design, and simulation work. I have educated nurses and doctors and allied professionals from students to experienced people with long service.
Back in 2024 I gave a talk at the Houses of Parliament (All Party Parliamentary Group – Dying well, Finding Solutions to complex Issues) where I presented a story about a child whose parent was worried that people would think they did not love their child enough because they had accepted their health professionals’ opinions, not gone overseas, not pushed for painful interventions and had accepted their child was dying. The parents actually questioned if they did indeed love their child less than other parents they had read about in the media, who had gone to court to fight against a palliative approach. It got me thinking, it is not enough to just educate healthcare professionals but we need to educate the public.
The idea of a book was born! What better way to educate people than through storytelling, helping people connect with children.
My laptop came to after school activities and on holidays. Before work and after work I kept typing, only taking a pause when personally bereaved. There were so many patient stories to blend and anonymise, so many themes to share, so many misunderstandings to address.
Through a series of anonymised composite real-life stories I explore the often-difficult path families must navigate – the delicate tightrope between having hope and accepting reality. I touch on conflict, withdrawing life-sustaining treatment, knowing when to stop and going to court as well as joyful moments where children with short lives do beautiful things. I am trying to show the world what children can teach each and every one of us about making the most of our uncertain lives and remembering and honouring those we have lost. I was honoured that Tamarin Norwood, Author of The Song of The Whole Wide World: On Grief, Motherhood and Poetry, wrote a personal foreword reinforcing the importance of sharing these stories of children and the people who love and care for them.
Then came the challenge of persuading a literary agent and mainstream publishing house to believe in the book and take children’s palliative care to the public. I was repeatedly praised for my writing and told the topic was important but that no one would buy a book about children’s palliative care! However all authors gets rejections and my daughter encouraged me to keep trying. You need only one yes!
The Wrong Order of Things is now coming out September 10th!
We all recognise that a child dying before their parents is the wrong order of things but we all know it is a reality. This book is an opportunity to educate the public about expert symptom management, careful communication, collaborative working, advance care planning and peaceful, dignified end of life care. I also want the public to know about lesser known aspects of our role such as antenatal palliative care and care after death. Most importantly I want to encourage encourages everyone to talk openly, honestly and with kindness, respecting people will sometimes see things differently. Society needs to talk more openly about death, dying and grief. We need to extend this conversation to include the reality that children can die too. And we need to consider how we talk honestly and kindly to children about ill health, death, grief and bereavement.
I have stepped out of my comfort zone and talked with journalists and created videos for social media. The Wrong Order of Things really is a book for everyone – your friends, parents and neighbours as well as doctors and nurses who can count it towards CPD!
The book is available for pre-order now from Amazon https://amzn.eu/d/05HyoLLZ and I hope that people will read it, share it and talk about it. Ultimately I hope it improves care and understanding for a larger number of children that I could ever reach in any other way.
Media reviews
‘This book required much tea and many tissues, but I am grateful for these inspiring stories.’
‘This brave book explores the collaborative teamwork of children’s palliative care services, whose focus is not to add days to life (although with good symptom management, that is often the case) but to add peace, fun, contentment and joy to every precious day that remains’
Dr Kathryn Mannix
‘This was truly the easiest of difficult reads.’
Evie King author of ‘Ashes to Admin’ and ‘Get Ahead of Being Dead’
By Dr Michelle Hills.
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