Specialist Paediatric Palliative Care in New Zealand
An invitation to share your experience
When a family is told to ‘go home and make memories’ time becomes so very precious. I feel like I lived a lifetime with Jem in her 8 month illness. We were forced to be so present, not wanting to waste a moment of it; the luxury of tomorrow’s uncertain.
It occurs to me that even 100 years wouldn’t have been enough and I was so blessed to have 15 of the best with her.
I can’t sugar coat it though, that’s just time and counselling talking*; those months were also harrowing.
Pediatric terminal illness is exactly the shit show you might imagine it to be — and then some. I wager every family who's walked this lonely path has a pocket full of shocking and usually unrepeatable experiences; not all from the devastation of a horrid disease, but from the circumstances families are forced to navigate to have their kids cared for.
The bottom line is that some children
will, and most children will not — receive specialist palliative and end-of-life care when dying from a serious illness.
Only some children will be psychologically supported at an age appropriate level.
Only some families given the tools to talk about their child’s imminent death. Perhaps you can imagine it for a moment, having that conversation with your kid? With their siblings?
Only some children will be given a personalised pain management plan. The age appropriate medicines that deliver comfort and dignity. The medicine that might also give their grieving family some assurance, that they didn’t die in pain.
Compassionate care is a basic human right; it’s the type of treatment we might feel entitled to receive as adults, at our time. And we probably will, because our care is funded.
Specialist paediatric palliative care is only funded to be available in Auckland. And with a dollar amount that doesn’t include all children; not even all those dying from serious illness in Auckland. It’s the post code lottery, with a bonus-ball of age discrimination.
Here’s where you, the already weary and absoutely-done-with-this-shit might choose to contribute to a potentially triggering project.
I know it doesn’t sound like a great offer. What can I say? The following reason might inspire you to take action…
I’m collecting stories from families who have endured this journey, with or without paediatric palliative care, from anywhere in NZ. From people who; and I can’t stress this enough — are willing to share their story without it causing them new pain.
The invitation to share your experience is to build a compelling, 1st hand narrative of our experiences and use it to ask our leaders to do better. Or roll the report into a bat and beat them around their heads with — one of the 2 options will prevail. Both options interest me.
Jemima said, “If I can’t be cured, I’ll be the cure” and I think we can expand that to make things a bit better for kids and families who are dealt one of these incredibly rough hands.
If you’re interested in finding out more, please contact me without any obligation to take the conversation further, but I’d love to hear from you.
I am grateful that Jemima received palliative care from the only Paediatric Specialist doctor working outside of Auckland. Dr Amanda Evans, founder of Rei Kotuku.
Rei Kotuku is a registered charity that provides specialist palliative care to children and their families without charge, through the generosity of a single anonymous donor.