Written by Jack Thorne, this powerful drama aired on the BBC over the past couple of weeks tells the story of 13-year-old Marnie who has a rare form of muscular dystrophy. It shows the emotional turmoil of her mother, father and sister as Marnie suddenly deteriorates and is put on life support. We also see the powerful emotions that members of her medical team feel when it becomes apparent that Marnie has suffered catastrophic brain damage. Each person reacts in a different way, but all are trying to do the right thing.
Marnie’s doctors believe it is in her best interests to stop further treatment. Her mum cannot agree after so many years of battling for her daughter’s life. Her dad is torn but feels that Marnie might be suffering. Her sister is caught in the middle. And so begins a fight that will take them through every stage of a legal process, as they struggle to contemplate this huge decision. Who decides? And in whose best interests will it be?
It is often in situations where parents feel excluded from decision-making and powerless against their medical team’s perceived complicity that communication can break down and courtrooms become involved. We are all too familiar with the recent adversarial and high-profile cases that can result, fanned by unhelpful media attention. Developing trusting relationships, open communication and really taking account of the parents’ expertise can be key determinants of reaching a place of acceptance between parents and the medical team. Research by Mitchell et al (2019) reflects this parental experience[1].
The drama shines a light on the difficult dynamics that families face when making these tough decisions. The strain on a couple’s relationship when their views don’t align and the massive impact on a sister who feels a pressure to be the ‘perfect’ sibling.
Whilst a compelling ‘warts and all’ portrayal of family life with a disabled child, children’s palliative care was telling in its absence. It was a missed opportunity to show how children’s palliative care professionals could have helped this family to be more informed about their child’s condition and involved in the decision-making process. With support from children’s palliative care, it might have been a different experience for this family. They could have been supported to have honest conversations about their child’s potential pain and their death as soon as it was recognised that curative or life-prolonging treatment might not be in her best interests.
As bereaved dad, Dan McEvoy, describes in an opinion piece for INews, children’s palliative care enables families to cherish the time that they have left with their dying child. He lost his daughter Elisa in 2022 and he talks about how his local children’s hospice allowed him and his family to talk about what was most important for them and their daughter during her last days. In Dan’s words ‘The core of children’s palliative care is providing comfort – spiritual, physical, and mental. The earlier this intervention happens, the longer disabled children – like Elisa and Best Interests’ Marnie – can benefit from this supportive care and get the best out of what time they might have left, which could be months or even years.
This programme may be a harrowing watch, but it is essential viewing for anyone who wants to understand the ups and downs of caring for a child with a life-limiting condition. The heartache but also the joy.
[1] Mitchell S et al (2019). Parental experiences of end of life care decision-making for children with life-limiting conditions in the paediatric intensive care unit: a qualitative interview study. BMJ Open, 2019 May 9; 9(5) :e028548. doi: 10.1136/bmjopen-2018-028548.
Leave a Reply