Making the transition from children’s to adult palliative care less daunting

Transitioning from children’s health services to the adult health care system is a big deal, and it can be daunting. 

A new resource from the Paediatric Palliative Care National Action Plan Project has been designed to empower the decisions and thinking of the young people and families who walk in these shoes. 

This discussion starter booklet supports young people and their loved ones who have perhaps spent years engaging with palliative care services designed for children but have reached an age where the care they receive from a children’s hospital might not fit their future needs,” says Camilla Rowland, Chief Executive Officer, Palliative Care Australia (PCA). 

“Strong bonds and a sense of security and comfort can be what many families fear losing during this change, so this tool has been designed to get that on the table and develop a smooth transition plan so that treatment, care, and relationships are supported. 

“One of the unique aspects of paediatric palliative care, compared to adult palliative care is that young people and families can be engaged with a service for many years – doctors, nurses, allied health professionals become part of the family and part of a childhood.” 

The discussion starter booklet contains questions young people and families might like to ask their care team, and themselves, ahead of any transition to the adult health care system:  

  • Are my parents/family still allowed to be involved? 
  • How will my medical information be shared? 
  • Once I’m set up in the adult system, can I still talk to my paediatric team if I have issues or questions? 
  • What services that I receive now won’t be available when I transition to the adult health care system?  
  • And more. 

“The questions take you through the phases of the change, learning what the adult health care system looks like, and how to make sure needs are met once you are in the adult health care system,” Ms Rowland says. 

“This is a great example of the holistic approach of palliative care, where a person’s physical, spiritual, and emotional needs are supported.”  

The Paediatric Palliative Care National Action Plan Project is funded by the Australian Government Department of Health and Aged Care and is a collaboration between Palliative Care Australia and Paediatric Palliative Care Australia and New Zealand. 

“One of the real strengths of the project has been the involvement of voices with lived experience, and that is certainly the case with the Transitioning to the Adult Health Care System discussion starter,” Ms Rowland says. 

“During our consultation with young people and families, they told us of the mismatch that can happen between children’s and adult services, and I am so grateful to the young person and bereaved mother who helped shape this resource, and the clinicians who added their perspective. 

“We all come to this, wanting to make the future better for other children, young people, and families.” 

The ‘Transitioning to the Adult Health Care System’ discussion starter is available as a digital download or hard copy, free from the Paediatric Palliative Care website