National Palliative Care Week: The dying child

Tuesday, May 21, 2019

Approximately 3,700 Queensland families are living with a child or young person with a life-limiting condition. The emotional, physical and financial struggle for these families is immense.

As part of our focus on end-of-life care for National Palliative Care Week, today we look at the dying child. Care at the end of life and palliative care for infants, children and young people with a life-limiting condition involves care and support for physical, emotional, psychological, cultural, spiritual and social needs.

Children's Health Queensland's Paediatric Palliative Care Service, in collaboration with numerous stakeholders across Queensland, is developing the Care Plan for the Dying Child. The Care Plan for the Dying Child will be a clinical tool and an education resource aimed at supporting health professionals across the state to provide children and families with the best possible care during their child’s final days to hours of life. A series of videos and webinars demonstrating best practice principles of paediatric end of life care will accompany the tool.

Claire from CHQ said the goal of the program was to ensure "there were no regrets, that [the parents] know they did everything that they could and they were still a parent right up until the end and that their child had the best death possible."

Claire Radford: We've been very lucky to engage some consumers on our project and they've, you know, shared with us some of their stories, the good, the bad, and the ugly about their child's end of life care experience and how that was felt for the whole family. So, the whole goal is really...

Lucy Powers: Hopefully ... that families and children who are now experiencing end of life perhaps will have, you know, have received better care or may not have had the same experiences as previous families.

Claire Radford: And no regrets as well that they know that they did everything that they could and they were still a parent right up until the end, and that their child had the best death possible. We're really looking more broadly than just a symptom management we're looking at the holistic care needs. So, symptom management, yes, and comfort care. But also the psychosocial care and bereavement support for the family and the child and even extended family, including grandparents, looking at how we can facilitate parenting opportunities and memory making so that that end of life stage is as good as it can be for children, and looking at how we can support staff so that they feel comfortable and confident in delivering best practice care. Because, thankfully, children passing away is much less common than adults passing away but it does mean that there's not that many people who have those experiences to draw on and you may only care for one child in your whole career. And we want to make sure that staff have the confidence to do that well and to get it right because there's no take backs, there's no do overs. I think it's been fantastic for us seeing the other side of the story. We very much work, from a therapy perspective on you know, improving quality of life and getting ... improving health outcomes. Certainly for me as a speech pathologist, I'm not usually involved at the very end of life care point. And I found it really challenging and really humbling to be really exploring this area and I think it's a nice you know, it's an area of health care that we don't talk about, you know, death ... it's really uncomfortable, and particularly the death of a child is uncomfortable. And no one really wants to go there and it's a hell of a BBQ conversation killer. When people ask you what you're doing, but at the same time, we can make a difference at the worst time of a person's life. That's everything to me.

This project is supported by our second round of SEED (Support, Explore, Excel and Deliver) funding. The SEED funding program is designed to stimulate novel innovative approaches to the delivery of care as part of the Statewide strategy for end-of-life care. It’s part of Queensland Health’s commitment to ensuring all Queenslanders have access to safe and high-quality care at the end of their lives.

For more information about projects like this, visit the Improvement Exchange. For more information on care at end of life:

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Last updated: 22 May 2019