State of paediatric palliative care in Aotearoa is abysmal

 A new report shows paediatric palliative care in Aotearoa, New Zealand, to be abysmal, revealing that children who are very ill or at the end of life are missing out on services that could improve their quality of life. 

Co-author Dr Gemma Aburn from the University of Auckland’s School of Nursing says Paediatric Palliative Care in Aotearoa: Current state & Future directions published in the New Zealand Medical Journal showcases the gaps in provision and equitable access. 

“It’s the first time there has been a piece published of this nature in New Zealand,” Dr Aburn says. 

The paper was co-authored by Professor Merryn Gott, Dr Tess Moeke-Maxwell (Ngāi Tai ki Tāmaki & Ngāti Porou) and Dr Ross Drake a pioneer of paediatric palliative care in New Zealand. 

Dr Aburn says there is an urgent need for action to ensure equitable and sustainable specialist palliative care services for children, in particular Māori and Pacific, with serious illness throughout Aotearoa. While Aotearoa recognised the value of paediatric palliative care in the late 1990s, more than 20 years on, there has been a woeful lack of policy and service development since.

“Tamariki and rangatahi who are very sick face uncertainty every day of the week, along with their families supporting them. They should have good access to paediatric palliative care. 

“This is the difference in optimising quality of life, to comfort and provide support that allows them to reach their full potential for however long that might be,” says Dr Aburn. 

But the current research demonstrates that many children and whānau are missing out on their basic right to this essential care. It also highlights that international standards published two years ago in 2022 have not been met in Aotearoa. 

“Legislation stipulating all New Zealanders should have access to services to meet their needs and receive equitable levels of service has not translated to children receiving adequate palliative care services. There is evidence of substantial geographical and cultural inequity, especially for Māori and Pacific whānau.”   

She says the consequences were far reaching resulting in poor care for children, such as the physical and emotional burden for them and their whānau. Poor symptom management, impaired quality of life and complex grief responses following a child’s death for bereaved whānau. There was also the financial burden on the health system, including increased hospital stays and unnecessary interventions. 

“It is critical that Aotearoa urgently invests in children’s palliative care to give every child with a serious illness the opportunity to reach their full potential with appropriate specialist support.”