A bit like gymnasts – A nurse’s reflection

I’ve been a Registered Nurse for 15 years.  From a young age I wanted to be a nurse after being a patient in hospital and idolising the paediatric nurses who cared for me.  I landed my first dream job as a Neonatal Intensive Care Nurse where I worked for 10 years.  I had the privilege of caring for some of the smallest and most vulnerable babies born in South Australia.  Sadly, despite advancements in neonatal intensive care, some babies did not survive.  During the 10 years I worked in Neonatal Intensive Care, I advocated strongly to improve the care provided to families facing the loss of a baby including the development of a dedicated palliative care space in the unit. My passion for palliative care led me to my current role as a Paediatric Palliative Care Nurse Consultant at the Women’s and Children’s Hospital in Adelaide.  A position I love and couldn’t imagine not doing.

It’s hard to define the role of a paediatric palliative care nurse because it’s so varied.  We are a bit like gymnasts in that we need to be flexible, adaptable, and responsive to the changing needs of the child/family, the health care system, and many competing demands.  The role of the palliative care nurse and the palliative care team is to provide an extra layer of support, guidance, advocacy and be part of the village / care team surrounding the child and family.

We care for families from antenatal referrals through to 18–19-year-olds in the hospital, home, and community.  We walk alongside the family / child from point of diagnosis, throughout the illness and treatment phase, to the end of life and into bereavement

We come to know the family and child intimately – who they are as people, what brings them joy and connection, where they find strength; not just the illness or condition but how the child and family fit into the world, their community and family structure.

We check in regularly through phone calls, emails, home visits, telehealth consults or during hospital appointments and admissions.  These interactions are often brief but provide huge insight into how the child and family are doing day to day, what supports are needed, and any unspoken worries or fears that need addressing.  We help to navigate the daily challenges including NDIS processes, outpatient appointments, symptom assessment and management, pressure area care, mobility aids, transportation, school support, community support, the list goes on.  Families often comment that nurses just seem to know when to call or visit and always turn up at the right time when needed.

We stand alongside the child and family cheering them on, helping them celebrate the little wins, recognising that some of the smallest milestones are their greatest achievement.  I can’t tell you how many times I’ve clapped and cheered with delight alongside the family witnessing achievements.  It may just be a spontaneous poo or a settled night’s sleep.  We are there for the good days and equally on the not so good days.

We are reliable, we follow through on promises, we truly care, and we show up every day with the aim to make a difference and help the child and family live life to the max.  We are the strength in the shadows, that reassuring smile, that warm hug on the tough days, that listening ear, or helpful voice when the words don’t come easy.  Families often don’t realise that we are not just one individual, but nurses work as a team and part of the bigger paediatric palliative care service.  Nurses support each other, share knowledge, skills and expertise and work collaboratively to provide the best possible care to the child and family.  Often much of that work is done behind the scenes in coordinating with the health care and community teams, liaising on the family’s behalf, supporting the staff involved in the care and making sure everything runs as smoothly as possible.  If we don’t know the answer, we will find out!

It is a great honour and privilege to be a palliative care nurse.  To me there is no greater privilege than a parent entrusting you in the care of their child and sharing their child’s life with you.

Every child and family you meet leaves a lasting impression.  We learn, we grow, we develop, we don’t always get it right or say the right things or have all the answers, but we truly care and feel honoured to be part of this special village.