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Dr Michelle Hills has spent years caring for terminally ill children — and time and time again, she’s seen people get the same thing wrong when it comes to death.
The chief medical officer at Martin House Children’s Hospice says many families fear that talking about dying means ‘giving up’ on a loved one.
But in her opinion, the opposite is actually true.
‘I was talking with the father of a child who was stopping chemotherapy and dying and he said to me, “how can we just give up on him?”, then in the same week, a dear, dying friend told me, “I feel like I’m giving up”,’ Dr Hills tells Metro.
‘Yet neither of them were giving up on anything. They were both finding peace with the fact that death could not be avoided and doing what they could. The time left is even more precious. And accepting is not giving up.’
The palliative care expert, and author of upcoming book, The Wrong Order of Things, adds: ‘When families choose not to pursue certain treatments, they are not refusing care — they are choosing a different kind of care, focused on comfort and quality of life.’
Along with feeding into emotions like guilt and shame, Dr Hills warns that avoiding conversations about death can leave patients and their families without ‘the end-of-life care they deserve’.
In terms of children specifically, while talking about the possibility of their death is (understandably) an unbearable prospect for most parents, she claims it’s vital to ensure advanced care plans are in place, and so ‘everyone understands the plan’ if there’s a deterioration.
According to recent research commissioned by St Christopher’s Hospice, 70% of UK adults had never heard of an advance care plan and just 3% had one in place.
Leonor, a nurse at St Christopher’s, shared: ‘We know people find it hard to talk about their wishes – it’s something we often put off and think we’ll do later. But talking about death won’t make it happen and it actually means you’re more likely to get the care and support you need when you need it.’
Language is important
Dr Hills highlights how the language people use around this keeps it a taboo topic, explaining: ‘I wish people felt more comfortable using the words “dying” and “died”.
‘Phrases like “passed” or “gone to sleep” can be confusing and misunderstood, particularly by children or people whose first language isn’t English.’
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This then has a knock-on effect for bereaved families, who she says are often left isolated because others are afraid to talk about the child they’ve lost.
A third of bereaved Brits surveyed by Marie Curie said they frequently avoid talking about their loss because they know it would make others uncomfortable, despite 46% saying talking was a preferred way of celebrating the life of their loved one.
‘Parents remember their children every day, but too often people change the subject or avoid talking about them because it feels so difficult,’ says Dr Hills.
Not only does she hope society will become more comfortable listening to stories about those who’ve died, and using their names to keep their memory alive, she wants people ‘to know that it’s okay to cry, and it’s okay for our children to see us cry.’
Hospice care is about living, not just dying
Alongside death itself, Dr Hills says there are a number of misconceptions about palliative care; most notably that it’s somewhere you only go to die.
‘Palliative and hospice care is about living before you die,’ she says. ‘It’s about high-quality care focused on quality of life.’
At Martin House, that typically means helping children continue doing the things they love — whether that’s playing, listening to music, creating art, or spending time with family.
Dr Hills continues: ‘It’s about allowing a child to be a child. It’s about medicine that makes you feel better, and making awful times, less awful.’
When it seems the time is near, the focus, she explains, shifts away from medical numbers like heart rate and blood pressure and towards the patient themselves, from whether they’re comfortable and calm to any help they may need to deal with pain or distress.
‘We are not there to take away hope or faith,’ the paediatric palliative medicine consultant adds. ‘We will still treat correctable problems and actively manage symptoms.’
Ultimately — and while it may seem a lot more daunting for hospice patients and their relatives — she describes the role of an end-of-life carer as ‘allowing a peaceful natural death, then supporting people in their bereavements.’
‘This year my own dad died,’ Dr Hills recalls. ‘I sat with him and watched the process of dying as I have done so many times before.
‘When I returned to work I was with a family as their daughter was dying. As I looked at her face and listened to her breathing change, I could see my own dad lying in that bed too. I remember suggesting they had some time as a family together, ultimately so I could have a moment outside of the room, when the dad reached out, touched my arm and said “Dr Michelle, stay, it gives us such comfort knowing you’re here”.
‘In that moment I knew that staying wasn’t struggling to maintain self-care, but meaning I could bring peace to others, and that too provided me comfort. We are all made up of our experiences as well as our expertise.’
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