"Parents who've had a child who's died tell me that people will cross the street just to avoid a difficult conversation," says Michelle Hills (Medicine 1997), a children's palliative care specialist and author of the forthcoming book The Wrong Order of Things.
"And when somebody's had a child who has died, they might not even know what to say when people ask, 'How many children have you got?' Do they say one or do they say two?"
Although everybody has some experience of death and dying in their life, Michelle believes the public lack a language with which to talk about death. She hopes her new book, which relays stories from her time working with sick and dying children inside NHS hospitals and hospices, will help to lift a de facto public gag order on the topic of death through instilling an understanding that, "a death which is given good palliative care can be incredibly calm and peaceful."
She says: "I want people to be less scared of death because although losing someone you love is devastating — grief is horrific — the process of dying can be incredibly peaceful and even beautiful.”
Michelle feels she has a message to share. She was invited to speak in the House of Commons by Baroness Finlay, and has recently started building an online presence, sharing videos about how hospices support patients to live meaningful lives as comfortably as possible.
In a recent Instagram video, Michelle describes an option provided by hospices which she says many families don’t know about “because we just don’t talk about things.” Rather than going straight to a funeral home, a family can choose to make use of a hospice’s ‘cool cots’ or ‘cool rooms'.
She says: “Families can have the chance to say goodbye when there are no tubes and machines. They can hold their child’s hand, they can lie with their child, they can say prayers or play music. It’s not right for every family, but some families get so much comfort from that.”
When families find themselves using hospices, it is open, compassionate communication about the facts of dying that enables patients to access care which can facilitate them to live in a way that feels most meaningful to them.
Michelle says: “We need to understand people’s goals of care. Do you want to go to school? Do you want to go on a family holiday? Do you want to manage this at home without going into hospital? Do you need respites or can you cope?
“Different people will have different ways of looking at things. We’ll have some families who will choose a very active approach to care and will want lots of interventions. And we’ll have other families who will say to us, ‘you wouldn’t put a dog through this, what are we doing?’
“And it’s important to recognise that neither of those are wrong. What is most important is respect, listening, communication, collaboration, finding compromise and working together to find out what's right for this family.”
She adds: “Sometimes families have a huge amount of guilt if they opt not to do a particular treatment. And I always try to encourage families and say, it’s not that you’re turning down a treatment, it’s that you are choosing a different one. You are choosing a treatment based on comfort, being unstressed and not in pain.
“The strange thing is, sometimes people live longer when we take that approach. When we stop chasing numbers and start focusing on the child in front of us.”
The Wrong Order of Things by Michelle Hills is published by Mirror Books. It will be available to purchase from September 10 2026.
