Is paediatric palliative care adequate in New Zealand?
Child Cancer Foundation CEO responds to a recent report and calls on Health New Zealand/Te Whātu Ora to adequately fund paediatric palliative care services.
We have the privilege of walking alongside many families who sadly face the loss of a child due to childhood cancer. It’s unfortunately the leading cause of death in children under the age of fourteen, and their passing requires specialist medical care to ensure it is as dignified and pain-free as possible.
Our Chief Executive Monica Briggs MNZM reviewed a recent report into paediatric palliative care, and we’d like to share her press release in response to it:
Child Cancer Foundation Chief Executive Monica Briggs MNZM acknowledges that the recent release of a report into paediatric palliative care “paints a very sobering picture about the supports available to children and their families who face the most challenging and sad journey of their lives, including inequalities in terms of access to care for palliative children.
“Much of what is provided to families is limited by funding and is often supported through charitable giving such as the services provided by Child Cancer Foundation. What we provide is designed to meet the needs for the whānau of these children. They need to feel safe and supported during this time which is crucial for ongoing grief and navigating loss.” — Monica Briggs, Child Cancer Foundation CEO
Ms Briggs recalls the story of a young man who received a bleak prognosis with only a 5% chance of a successful outcome from treatment. Yet his family was resolute and understandably determined to embrace hope.
Initially, the family struggled to accept the most likely outcome of their situation, which made it difficult to discuss end-of-life care. “Our Family Support team provided a compassionate presence, offering a listening ear and emotional support.”
“Our role allows us to continue supporting families after their child’s death,” Ms Briggs notes. “This family’s journey was heartbreakingly brief, yet profoundly impactful” she adds.
The generous contributions from our supporters made a significant difference to this and other families in times of personal tragedy. This generosity enables the Foundation to stand by families in their darkest hours.
“While what we provide is an important part of the overall support given to families, this is in no way a replacement for fully resourced and fundamentally important comprehensive paediatric palliative care services” Ms Briggs says.
“Like the Foundation, those involved in supporting families do their very best under very constrained circumstances. Compared to services for adult palliative patients, it is a far more limited environment for children where palliative care is a specialty. Paediatric palliative care requires further specialisation and there are many health professionals across NZ who have stepped into this space to ensure children ‘die well’, many at their own expense, which is not really a long-term sustainable solution.” — Monica Briggs
Childhood cancer is the leading cause of death in children under fourteen. Medically, they are usually incredibly complex cases needing expert medical support to ease their passing in a way that is as pain-free and dignified as possible. “So, we and the families we support have an interest in the proper resourcing of effective paediatric palliative care that supports the many health professionals who work in this space, be that funded hours or expert training” Ms Briggs says.
Ms Briggs goes on to note the report estimates the cost of providing services across the country is around $8m, with the only government-funded service provided by Starship Children’s Hospital.
“When you consider the current health budget is around 16.68 billion dollars, we are only talking about 0.048% of the total budget. While philanthropic funding is an important part of the support to families it should be in addition to, not instead of, a comprehensive government-funded solution.” — Monica Briggs
