CareSearch Blog: Palliative Perspectives

The views and opinions expressed in our blog series are those of the authors and are not necessarily supported by CareSearch, Flinders University and/or the Australian Government Department of Health.
 

The little things - Perspectives of paediatric nursing during end of life care

A guest blog post by Alison McLarty, Nurse Educator, Quality of Care Collaborative Australia

  • 4 March 2020
  • Author: Guest
  • Number of views: 1279
  • 0 Comments
The little things - Perspectives of paediatric nursing during end of life care

During my paediatric nursing career, I have had the honour and privilege of caring for babies, children, young adults and their families during end-of-life (EOL) in various settings. I consider the EOL journey as a rollercoaster; highs and lows, waves of intense emotions, adrenaline, laughter, terror, exhaustion and moments of just hanging on for dear life.

The role of a paediatric nurse caring for a child and their family during EOL can be challenging and very rewarding. Children seem to write their own rules and story. We hop on the rollercoaster with the family to support and guide them through this difficult time. We provide pain and symptom management support; these little bodies can handle larger doses of opioids than adults! As nurses we get to go home at the end of the day to recharge our batteries. Families do not, we need to support them and remind them of the importance of looking after themselves. The simple things mean the most: cups of tea and coffee, sandwiches, involving the siblings, or sitting with the child whilst a parent has a shower. Encourage parents to be parents by involving them with baths, mouth care and hopping into the bed to provide loving cuddles. Educate and advocate for the child and family. Most families have not endured the loss of a child and do not know the choices that are available to them. Providing options such as taking the child home to die or after they have died empowers the family to choose the right path for them.

I recall a home visit where the house was full of family and younger (children) relatives. Families value being included. This family were eager to help, so they all received jobs: carrying bags, holding oxygen tubing, counting syringes, separating the plastic from the paper, helping with a bed bath and drawing pictures for their brother and for me. I also learnt a few jokes that day. These little things help families feel included and valued. You can see them feeling important and proud being able to help care for their brother/ cousin. 

Memory making and creating new experiences is another big part of paediatric EOL nursing. Memories are something parents will treasure long after their child dies and is a source of comfort. Memory making does not have to be the big overseas trip. Families can visit theme parks on the Gold Coast or have their favourite superhero visit. We can try bringing their holiday destination to them by decorating and de-medicalising the room. Encourage the family to take their child outside and feel the fresh air, lay on the grass or play on a swing one last time. Encourage pets and friends to visit if possible and take photos and videos of these moments. A father once shared with me an experience his son would miss out on, he asked ‘would it be possible to put a beer down his son’s nasogastric tube?’

I have learnt over the years, it’s not the big grand gestures that the families remember, it is the little things. Facilitate kids to be kids and provide fun and laugher where possible. This enables the family to create memories that they will always cherish. Kids will surprise you, they are tough and have good resilience. They teach us things, don’t be afraid to care for them!

Profile picture of Alison McLarty

 


Alison McLarty, Nurse Educator, Quality of Care Collaborative Australia

 

 

Paediatric Palliative Care Service of Queensland

Quality of Care Collaborative Australia (QuoCCA)

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The CareSearch blog Palliative Perspectives informs and provides a platform for sharing views, tips and ideas related to palliative care from community members and health professionals. 
 

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