Dr Michelle Hills works with children who have life-shortening conditions (Image: Martin House Children’s Hospice)
More than 5,000 children die across the United Kingdom each year, but many of the families left behind suffer in silence because Britons shy away from talking about death. This is the message from children’s palliative care specialist Dr Michelle Hills, who says it is time to remove the stigma about dying.
She said: « People think of dying as failing. People think of dying as losing somehow. Unless we talk about it openly it’s really hard for children, for families, and for those who are bereaved. So a lot of families who have had children who have died, people don’t mention their child’s name. And actually, we need to speak their child’s name. We need to remember them. »
The hospice ensures families can do fun things like playing (Image: Martin House Children’s Hospice)
She said: « We need to think about the huge impact that they had on that family or even the wider community.
« But there is such a stigma in this country about talking about death and dying. And children dying is just one step further.
« It’s just in that box of being so hard and scary and difficult that people just don’t do it.
« But I think the more we talk about it, the more we can get it right for these families and we can get them the support they need. »
Dr Hills has been working at Martin House Children’s Hospice in Wetherby, West Yorkshire, for a decade and focuses on ensuring that children with life-shortening illnesses have as good a life as possible.
The hospice in Yorkshire has a lot of green space for families to enjoy (Image: Martin House Children’s Hospice)
Her work, and that of her colleagues, can start with a family before a child is born, if a baby is diagnosed with a life-shortening condition in the womb.
The chief medical officer said: « We try to help families navigate through really difficult situations where it’s hard to always predict the future.
« And the reality is that children are not immune from having conditions where they might die early. So we have to raise awareness of it.
« Our focus is always on making sure that that child can live as well as possible for as long as possible.
« We have to make sure families get the support they need. Otherwise, families are suffering in silence at home. »
The hospice provides care for children across West, North, and East Yorkshire (Image: Martin House Children’s Hospice)
She added: « And I think the fact that children’s palliative care starts much earlier from that point of diagnosis is really, really powerful.
« Because it means we can get that support in as early as possible. And in some cases, we don’t even have a diagnosis. We just recognise that the child will die early. »
She says that as well as there being a stigma about dying there is also a stigma in this country about hospices for children.
The aim is to give families support not just in terms of the medical side and dealing with their child’s condition but also ensuring they can do fun things like going out, playing, doing art and music, and valuing their child’s life and creating memories.
To ensure the hospice can continue to provide this support for Yorkshire families, it has launched a campaign to transform its building, which will cost £21.9m. This includes a fundraising target of £2m by the end of this year.
Dr Hills said: « People [need to] understand that palliative care does not mean giving up.
« In fact, having palliative care involved probably means you live longer. And it certainly hopefully means you live better. You live a better quality of life.
« So I think for me, it’s raising that awareness. It’s getting rid of those barriers to referrals. It’s helping families understand how positive it can be and what it adds.
« It’s helping professionals understand that we can get involved early. And that doesn’t mean stopping active treatment. It means we’re working alongside our colleagues and making sure we look at symptom management.
« It is tragic that children die early. And I wish it didn’t happen to anyone, but we can’t alter the fact that it will.
« So we have to talk about it and make it the least awful it can be. We have a duty to these children. And I think as a society, it’s almost like a public health message. »
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