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Paediatric Palliative Care Nursing - the bittersweet role of helping care for sick kids

Photo: Health Times Magazine
Imagine being a part of the remarkable team that helps makes the final years, months or days of a terminally ill child’s life a little easier.

It’s the bittersweet reality for paediatric palliative care nurse Megan Pusterla, who spends her days caring for the residents of children’s hospice Bear Cottage.

“We care for neonates to nineteen-year-olds who have been diagnosed with a life limiting condition and their families,” says Ms Pusterla.

“Families come to stay at Bear Cottage for both much needed respite and end of life care.

“In addition, we provide bereavement support and family support camps which are a really enriching and enjoyable aspect of the job.”

Currently employed as a Registered Nurse and Acting Clinical Nurse Educator, a typical day for Ms Pusterla is varied.
“A typical day encompasses chatting with families and listening to their current concerns and challenges, trying to ascertain how we can lighten their load, be it through direct care of the child with the life limiting illness or one of our volunteers helping to entertain a boisterous and exuberant 3 year old sibling!

“Without the pressures that you have in an acute care facility, we are able to give our children and families time, whether it's for a deep, soothing, relaxation bath or attending to the many and varied complex care needs.”

But the care provided by a paediatric palliative care nurse goes even further than that, as they help guide children and their families through an extremely challenging and difficult time.

“It does certainly have an emotional aspect.

“We offer children and their families time and space to voice their thoughts, feelings and concerns without judgement, at times facilitating difficult conversations within families.

“At Bear Cottage, it is very much a multidisciplinary team approach to all aspects of care.

“We have a dedicated social worker, paediatrician, local GPs, art therapist, music therapist, and play therapist and we all support each other to best care for our families.”

Ms Pusterla says children living in and visiting Bear Cottage come with a variety of health conditions, all which require different types of treatment and care.

“Working in paediatric palliative care means I am constantly learning and encountering new challenges.

“I find the connection with children and their families rewarding.

“I feel it is a privilege.”

Getting into paediatric nursing was a winding road for Ms Pusterla, who originally planned to be a high school teacher.

However, with a family full of nurses, she decided to try her hand and soon found it was her calling.

“I did my new graduate year at Concord Hospital doing rotations in Renal, Vascular and Oncology/Haematology, whilst I enjoyed different aspects of each specialty, Renal Nursing is where I felt the best fit and so the Nursing Unit Manager (NUM) offered me a permanent position.

“I continued to work in Renal and Renal Transplant both at CRGH and Royal Prince Alfred (RPAH) for the next 4 years working as a Renal Transplant Nurse Specialist.
“Through this I landed a once in a lifetime position as a personal nurse for 5 years. I then returned to RPA back to the Renal Transplant Outpatients and Clinical trials.”

It was after having her own two children that Ms Pusterla began considering paediatric palliative nursing.

“Palliative care is a part of Renal Nursing, it is a really special and rewarding aspect of the care we provide, so given my positive yet challenging experiences with palliative care I earmarked Bear Cottage as a place I would like to work.”

In Australia, there isn't any special training required to become a paediatric palliative care nurse.

“However I felt really supported transitioning from adult care to paediatric care at Bear Cottage, there was a real depth of experience around me to draw on.

“There are many challenges, however they pale in significance when compared to the challenges our families are facing.

“I focus on my role of supporting the child and their family. If there are particular challenges, I lean on my colleagues through informally and formally debriefing.”

Ms Pusterla says it’s important to debrief and practice self-care, due to the emotional nature of the role.

“If I look sideways at my colleagues, we all come from differing clinical backgrounds, ICU, NICU, Oncology, Neurology etc.

“But I think the one thing we all share is a capacity for deep empathy, not only for our patients but for each other.

“Each nurse brings unique and valuable contributions to the care of children with a life limiting condition no matter what their clinical background.

“In the moments where you are connecting with people through the extremes of life, through either witnessing or experiencing those extremes there can be moments of true beauty even when there is incredible sadness.”

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Nicole Madigan

Nicole Madigan is a widely published journalist with more than 15 years experience in the media and communications industries.

Specialising in health, business, property and finance, Nicole writes regularly for numerous high-profile newspapers, magazines and online publications.

Before moving into freelance writing almost a decade ago, Nicole was an on-air reporter with Channel Nine and a newspaper journalist with News Limited.

Nicole is also the Director of content and communications agency Stella Communications (www.stellacomms.com) and a children's author.