This week is National Palliative Care Week 2021. This is a week dedicated to discussing the true meaning of palliative care and the value it brings to the lives of patients and their loved ones. Hannah’s House provides palliative respite for children with a life-limiting or complex condition in the family home.
We focus on the quality of life and support for the child and their whole family including symptom management, provision of respite and care support through bereavement and beyond. We understand that palliative care requires an individual approach, supported by a multidisciplinary team. That’s why we work closely with Perth Children’s Hospital (PCH) and Silver Chain Palliative Care Services (and in future the Perth Children’s Hospice) to meet the wishes of the family in the comfort of their own surroundings.
The theme of this year is Palliative Care: It’s More Than You Think. Inspired by this theme, we wanted to share with you why palliative care is not about death, but rather quality of life. We thought there was no one better to explain this than our Clinical Coordinator Jodie. She’s been working with Hannah’s House since 2016 and is a Registered Nurse who has worked in paediatric palliative care settings. Jodie has also been involved in providing palliative care respite to several children who passed away at home with the support of Hannah’s House.
We sat down with Jodie to discuss what paediatric palliative care means to her and her role at Hannah’s House.
What does paediatric palliative care mean to you?
To me, paediatric palliative care means empowering families to know the choices they have and giving them access to the best care possible for the hardest time of their lives.
What are some common misconceptions surrounding palliative care?
The biggest misconception around palliative care is that it is sad, difficult and scary. Even though it can be all those things at the beginning, once you have more information and start making choices that are right for you and your family, the journey becomes easier.
How does Hannah’s House support families who are on the palliative care journey?
We support our families by empowering them to have choices, to know what these choices are and to support them in any choices they make.
We provide information and education as needed without overwhelming them.
Our main focus is on filling their time with joy, and wonder and opportunities to make beautiful memories from wonderful experiences.
It’s about supporting families to spend time together.
What is a meaningful memory you’ve experienced in providing palliative care at Hannah’s House?
My most meaningful memory has been helping a very special family to not be scared. It sounds simple but it was the most amazing experience I have had in my whole career as a nurse.
Do you have any advice for families who are new to palliative care?
Always ask, you never know what is possible if you don’t ask. Ask for time, ask for space, ask for a hug, ask for someone else to ask the hard questions, ask for the things you don’t think can happen because they just might.
We are so proud to have Jodie on the Hannah’s House team and see the incredible connections she makes with our families.
Find out how you can provide care, comfort and joy to children with life-limiting or complex conditions here.