Sacha Langton-Gilks is mother to DD, Rufus and Holly. Her son DD (David) was diagnosed with brain cancer in 2007, and died in 2012 aged 16 years. Sacha’s blog is based on the theme of her book Follow the Child, and her passion for every child/young person and their family to have real choice in palliative and end of life care.
A good death is priceless
To say that I was shocked is a total understatement – sitting alongside our children in a high dependency ward, a Mum was telling me the story of a child who had died in the ambulance in the car park of our vast hospital. That might not sound unusual, just bad luck compounding a tragedy, until you know this was not an emergency admission to A & E after a sudden, catastrophic accident; this child was expected to die from their disease and there should had been plenty of time to prepare for this eventuality.
There’s no dress rehearsal for death – there’s just one chance to get it right
If conversations around what the child and family might want to do in the event all the usual treatments fail are avoided or left late, then when this happens and they express the wish for their child to go back home to die, a death in a car park with all the attending stress and panic can be the result. The worst part of the story for me was that the mother didn’t make it to the ambulance in time; she was packing all their stuff when her child died outside in the ambulance with the father. Words fail me at this point – one of my worst fears was that I would not be there at the moment DD died.
A preventable scenario
I know it does not have to be this way; this is a totally preventable scenario. I know because my son DD died calmly and peacefully in his own bed at home as he wished, surrounded by his parents and siblings. (His cat had gone hunting or would have been there too.) Furthermore, I know that there is no medical reason why, with planning and the right support, any death cannot be managed at home like my son’s, or in a hospice. (I asked a very experienced Paediatrician this question.) We were managing seizures, dementia, pain and sickness from spinal and brain tumours for the last three months at home, and the number one demand from my son was that he should not have to go to hospital ever again. We succeeded, and this is where I get very upset, because we were lucky: we lived in the right area, where the services and networks existed to be able to give my son and our family that precious, precious choice.
A good life, and a good death
I consider having managed a good death for my child, fulfilling his last ever wishes as the greatest achievement of my life and my biggest consolation in the howling chasm of grief. I meet families who have not been given that choice and they tell me they will never recover and, knowing what it means to me, I know they’re right.
All it needs to change this is for a national service for children and young people’s palliative and end of life care, where all the clinical care networks link up, just like maternity services do. I had assumed we had this for our most vulnerable 50,000 babies, children and young people with life-shortening diseases, and was stunned to learn that we do not. The service should start with a community children’s nurse – they are trained and experienced in palliative care – being present when a young person and/or parents receive a life-shortening diagnosis for their child. This specialist [ delete -palliative] nurse can then immediately explain what palliative services mean (and what it doesn’t mean, for example, explaining that needing palliative care doesn’t mean your child is dying right now; or, palliative care doesn’t mean you’re giving up on your child). They should explain what they can offer to the “whole family” and link them to the specialist services in their area, like their local children’s hospice. This nurse can then walk the path with the family, and help them put plans in place for death well in advance so that care for a good life and a good death link up seamlessly and it is not a sudden emergency when their child is at the end of their life. The service would end with linked bereavement support for all the family after their child has died. This is only available now if your local treatment centre happened to be one of our very biggest children’s hospitals in the UK, or you were linked to your local children’s hospice.
Only one family I know had this joined up experience of palliative expertise present from the very start to after the end of their child’s life, and all the services available locally to support their choices. And this wasn’t my family’s experience (our luck only extended so far).
The mums who shared their stories in my book, and I offer our experiences to break the silence and dispel the fear around what happens at the end of life and share what we did to plan and help our children and their siblings.
We dream of the day when every family has a real choice in end of life and palliative care, with good information given early on, together with linked services – because a good death is priceless.