This Dying Matters Week, Chris Krastins, Advanced Paediatric Nurse Practitioner at Forget Me Not Children’s Hospice, shares why our end of life care helps families to live well.
“It’s hard enough thinking about our own death and how to talk about what we might want to happen when that time comes. But imagine how much harder it is to have to think about and prepare for the death of your child. Sadly, many of the families we support face having to do exactly that. At Forget Me Not, preparing for the end of life sits at the heart of what we do. Because while we can’t prolong the lives of the children we support, we can help them and their families to live the best lives they can, making the most of every moment they have together. And planning for the end of life is a key aspect of being able to live well.
Advanced care planning is about giving families choices over what happens when their child dies, including decisions about place of death, pain and symptom management and how their cultural and spiritual wishes will be met. We help to ensure the child is involved too, where possible, and some of the young people we support have very clear ideas about what they want. It’s incredibly important to make sure these are listened to and respected.
That’s not to say it’s an easy process. Understandably, many families can be initially hugely resistant to talking about their child’s death. Our role at Forget Me Not is to sensitively and non-judgementally open up those conversations. This might happen over weeks, months, even years.
But doing so can make a huge difference. Advanced care planning takes away a lot of anxiety for families and it can give them an invaluable sense of control over what might seem entirely out of their hands.
The pandemic has of course had a significant impact on how we deliver our services. But when it comes to end of life care, you only get one chance to get it right. So we’ve continued to help families with advanced care planning, even if that’s had to be done via video call. We’ve also continued to support families at the hospice or at home at the end of their child’s life. And we’ve continued to provide families with the time and space they need in our Snowflake Suite at Russell House to say their last goodbyes.”
If this has got you thinking about what will happen when you die, what your wishes are and how your loved ones will be looked after once you’re gone, visit www.dyingmatters.org/AwarenessWeek for advice on how to start those important conversations.
And as a first step, if you don’t already have one, make a will now with Forget Me Not’s free will-writing service, available for a limited time only.