Very Special Kids Chief Medical Officer Dr Simon Cohen shares his thoughts on the need for more resources for paediatric palliative care. This opinion piece originally appeared in the Medical Observer.
In the developed world, death in childhood is relatively uncommon, and when it happens, or a limited prognosis is given, it seems more of a failure of modern medicine.
Despite its rarity, there is a significant number of children with life-threatening conditions, and this is increasing.
A recent paper from the UK estimated a prevalence of children living with a life-threatening condition at 32 per 10,000 population — double the previously reported estimate.
With a population of 4.37 million children in Australia, there could be as many as 14,000 children with a life-threatening condition.
Although challenging, we need to start talking more about paediatric palliative care and the options available to children and the families that care for them. Palliative care is not just for the elderly.
The spectrum of life-threatening conditions in childhood is different to adults and more varied. In the paediatric group, less than half have a malignancy.
The remaining children have a range of often rare conditions, mostly genetic or congenital diseases and neuromuscular conditions.
Many of these conditions have prognostic uncertainty and thus palliative care services may be required to support the patient and family for many years.
The road to be travelled requires many aspects of palliative care along the way, in order to mitigate the suffering of the patient and family.
For family carers, there is a particular need for psychosocial support and respite care. A study of families supported by Very Special Kids found that 47% of family carers exhibited clinically significant concerns with psychological wellbeing, including stress, anxiety and depression.
Parents are stretched beyond their limits as they work to meet the needs of their sick child and those of their well children; their own mental and physical well-being takes a backseat.
Hospices were originally established in response to the issue that death had become more of a medical event, occurring in a hospital, which is the case for most children in Australia. In contrast, a death well managed at home can create the best result in terms of bereavement and how the family feel the death was managed.
Where a death at home is not possible, a hospice provides the required medical support in a more comfortable environment.
Importantly, parents need availability of options to allow them to select the best one for their circumstances, yet in Australia there are only two hospices dedicated to the care of children with life-threatening conditions.
Beyond end-of-life care, a hospice can also provide much-needed respite care and the psychosocial support needed during the child’s lifetime and beyond.
The Very Special Kids model of care includes access to the hospice for planned and emergency respite care and a range of support services including counselling, group therapy, and assistance with accessing other government and community services and liaising with medical providers.
At Very Special Kids we support 555 children in Victoria with a life-threatening condition, and 366 bereaved families, but we estimate there could be as many as 4000 more children in the region that need our services. The same would be true for similar services in other states.
With all this in mind, how do we address this pressing need?
Health providers at all levels have a role to play. At the front line it is up to providers of primary care to be aware of the unique journey families face and the services available.
Families may need to be encouraged to seek help. Parents can be reluctant to accept palliative care support as it can be seen as ‘giving up hope’, but these services offer more than just end-of-life care.
On top of that, resources are needed to allow such services to grow. To create the support for these resources, we must have the conversation at all levels about appropriate paediatric palliative care options.