Dr Michelle Hills, a palliative care doctor who has spent years caring for terminally ill children, says the biggest misconception people have about death is that talking about it means giving up on a loved one. The chief medical officer at Martin House Children's Hospice explains that many families fear that discussing dying is akin to abandoning hope, but in her view, the opposite is 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 recalls. "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."
Choosing a Different Kind of Care
The palliative care expert and author of the 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."
Avoiding conversations about death can feed into emotions like guilt and shame, and Dr Hills warns it can leave patients and their families without the end-of-life care they deserve. For children specifically, while talking about the possibility of their death is an unbearable prospect for most parents, she says it is vital to ensure advanced care plans are in place so that everyone understands the plan if there is a deterioration.
Advance Care Plans: A Crucial Tool
Recent research commissioned by St Christopher's Hospice found that 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."
The Importance of Language
Dr Hills highlights how the language people use around death keeps it a taboo topic. "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."
This has a knock-on effect for bereaved families, who are often left isolated because others are afraid to talk about the child they have lost. A third of bereaved Brits surveyed by Marie Curie said they frequently avoid talking about their loss because 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. She hopes society will become more comfortable listening to stories about those who have 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
Dr Hills says there are a number of misconceptions about palliative care, most notably that it is 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 is playing, listening to music, creating art, or spending time with family. "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 the time seems near, the focus shifts away from medical numbers like heart rate and blood pressure and towards the patient themselves, from whether they are 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."
A Personal Reflection
Dr Hills describes the role of an end-of-life carer as "allowing a peaceful natural death, then supporting people in their bereavements." She recalls, "This year my own dad died. 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."
