The philosophy that makes my job one of the best in the world

“Palliative care is often misunderstood. It provides care for the patient as a whole person and works to address suffering of the body, mind and spirit. The goal is to enhance quality of life at all times during a serious or life-threatening illness.” – Daniel Mahoney

Today marks the beginning of National Palliative Care Week, so we wanted to share a special reflection from Very Special Kids hospice nurse Rebecca Meek, on what matters most to her when it comes to paediatric palliative care. 

When asked the question “what matters most?” in paediatric palliative care, many aspects of the job come to mind. I can list off many clinical duties such as pain management, cluster care, communication, nutrition, pressure area care and so on, but when you stand back and think about what really matters most, it is facilitating the child and family’s ability to experience their vulnerable moment of time the way they need to.

I am Bec and I am a Registered Nurse working at Very Special Kids – Victoria’s only children’s hospice. Most of my nursing experience and training was in the Emergency Department of a paediatric hospital setting where goals of care mainly focused on paediatric assessment and life-saving interventions.

Transitioning to paediatric palliative care has expanded my perception of what providing care to children is all about. What soon became obvious when starting at Very Special Kids is that providing optimal care to children with a life-limiting illness needs to encompass the child’s family as it is the family that provides the foundation to the child’s well-being.

This meant stepping back and really trying to see the world from the eyes of the child and family. Some of the main themes that are often presented are emotional fatigue, loss of family cohesion, sleep deprivation, loss of control and despair.

The nursing team at Very Special Kids are a very professional and caring collective that specialise in physical, psychosocial and practical support ranging from intricate delivery of palliative pain management to active listening of a parent vent frustration on the inequality of life. It’s a very diverse profession which can be so rewarding but also so ethically and emotionally challenging.

Nevertheless, there is a strong consensus within our team that Very Special Kids is an essential service and the care we provide invaluable. The team at Very Special Kids provide support services to over 900 families including emergency respite, end-of-life care, counselling, advocacy and bereavement support. Our united holistic approach allows us to deliver quality, family-centred care that includes empathy and respect.

It is this philosophy that makes my job one of the best in the world.