Misperceptions leading to a lack of understanding about children’s palliative care are known barriers to families accessing care and support that they could benefit from. We can overcome these if we show children’s palliative care at its best, show how it can help children to be children, and show the quality and range of relationships that make for the best care experiences. Recently, we invited the organisation Heard to be a guest on our monthly webinar series Together We Learn to outline their vital work to reshape the narrative surrounding children’s palliative care.
Why misunderstandings cause real harm
Working in collaboration with Together for Short Lives and others across the sector, Heard’s programme of work aims to drive a seismic shift in both public and professional understanding of what children’s palliative care truly offers.
A primary finding from Heard’s research is that public narratives still focus on sadness and fear, which makes families less likely to seek help early. These misconceptions can also affect the timing of referrals, funding and policy decisions, leaving families isolated or without access to vital services that could benefit them now.
“I’m sure many [hospice professionals] have heard parents who come either for end of life care or for bereavement support, who didn’t access the hospice before and know how heart breaking it is when that family says, ‘oh wow, I just wish we’d come earlier, he or she would have loved that’,” remarked children’s palliative care consultant, Tara Kerr-Elliott, in our recent webinar.
That’s why shifting the narrative matters. When people understand the full picture of what children’s palliative care provides, they’re more open to asking for information, accepting support and advocating for better services.
Changing the conversation through better communication
Heard, supported by the True Colours Trust, has spent years researching how people understand children’s palliative care, and how to improve that understanding. Their work has led to practical communication tools used by hundreds of professionals across the UK: Resources like their How to Talk About Children’s Palliative Care Toolkit, which gives clear tips on wording, tone and framing for anyone sharing children’s palliative care stories.
A key principle is the use of reframing strategies, says Tara. For example using metaphor to change a healthcare professional’s “gut reaction” which might actually be what is stopping them from referring:
“I often talk about palliative care being something that helps children to live as well as possible for as long as possible. The metaphor for that might be a book and making sure that every page, no matter how many pages there are, is really full.”
Other proposed reframing strategies favoured by Heard include:
- Leading with what children’s palliative care is, not what it isn’t: i.e. avoid myth‑busting.
- Sharing stories of living well, not just moments of crisis.
- Using simple metaphors and everyday language to make children’s palliative care feel approachable.
- Highlighting collaboration, not conflict, between families and clinical teams.
- Focusing on support, comfort, and quality of life, not just medical care.
How we can all help change the story
A long term collaborative effort is now needed to help shift public understanding of children’s palliative care. Because the only way we can change perceptions over time is by consistently challenging them within our own communities.
“If you’re trying to raise the funds to keep your service going, historically there’s been a huge focus on telling the tragic death and dying story, make people cry and they give. That absolutely works.
“The downside of that is it just goes to reinforce the misperceptions and actually alienates the very people we’re trying to support. Because we’re not considering that the people in that audience could be the future families that we’re going to be caring for,” explained Tracie Rennie in her presentation, formerly Deputy Chief Executive of East Anglia Children’s Hospices for over 25 years prior to consulting for Heard.
In summary, by changing how we talk about children’s palliative care, we make it easier for families to access support early when it can make the biggest difference. And as a result our whole community becomes more understanding, supportive and integrated.
If you’re interested in finding out more about our ongoing work with Heard, you can watch the recording of the webinar here:
