With WA’s first children’s hospice due to turn the sod next year, efforts are underway to promote holistic palliative care for children, as Dr Karl Gruber (PhD) discovers.
While palliative care is invariably associated with adults, particularly the elderly, people often overlook that children sometimes need these services too.
A significant number of children are referred each year to palliative care in Western Australia, and that triggers access to a wide range of services for both patients and their families or carers.
Among those services, patients receive assessment and management of symptoms such as pain, seizures, or irritability, while patients and carers receive education and information about medications and equipment. There is also psychosocial support for the child, siblings and family members, as well as social support, which includes providing information about finances, respite care options and relevant details about the National Disability Insurance Scheme.
In addition, carers are supported with clear information about care planning and goals of care, and services that can be provided for children as inpatients or outpatients. Patients also receive care and support during their end of life stage, and parents or other carers can access bereavement support.
The basic goal of paediatric palliative care is to improve the quality of life of children and support their families or carers.
In some cases, palliative care services are provided before a child is born. Perinatal palliative care is available in WA with the goal of providing the best possible care during pregnancy and childbirth, when the fetus is diagnosed with a serious abnormality, or a life-limiting condition. In these cases, palliative care can be extended to the mother, providing care by the obstetric management team, particularly if there is high risk of early pregnancy loss.
The Child and Adolescent Health Service is WA’s only provider of specialist palliative care for children, through the WA Paediatric Palliative Care Service (WAPPCS). Currently, about 110 children under care from WAPPCS, based at PCH. The palliative care team comprises a doctor, nurses, social worker, and a secretary, who work closely with the clinical team of each child.
Children referred to this service suffer from severe conditions that need regular supervision and support from a health professional. It is commonly thought that children under palliative care are at a terminal stage, however, Dr Lisa Cuddeford, who leads the WAPPCS at PCH, says the reality is that only a small percentage of children currently under palliative care are at a terminal stage at any one time.
“The word terminal is something that we wouldn’t often use,” she told Medical Forum. “For me it would signify a child that’s in a more active dying phase. Many of the children that we support are not in the final weeks or even months of life, but their families live with the threat of their death constantly.”
So rather than being limited to terminally ill children, palliative care is a service broadly aimed at any children with a long-term, life-limiting condition, who may still live for a significant period of time. These children and their family or carers are in need of specialised service that only WAPPCS can provide.
Another common misconception is that most of these children are cancer patients. In reality, children currently supported by WAPPCS come from many different clinical backgrounds.
“The majority of children have metabolic conditions, neurodegenerative conditions and static conditions, like very severe cerebral palsy,” Dr Cuddeford said. These conditions in themselves are not progressive, but some of the associated complications are, Dr Cuddeford explains. “They develop increasing lung disease or increasing seizures, and that probably constitutes the majority of the diagnoses.”
The WAPPCS team works with these children to meet their needs. But the team’s goal is not just to provide comfort and pain relief, but to provide a broader approach to improve their wellbeing.
Quality of life
The work led by PCH’s palliative care team is not just about providing support for children at the end of their lives. Rather, the team seeks to add value to whatever time children have.
“We really see ourselves as a team that is trying to help families and children live as well as possible for however long they have. There’s a beautiful quote from Ann Goldman, who was a paediatric palliative care specialist at Great Ormond Street Children’s Hospital (in the UK): ‘It’s really about adding life to years, not years to life’,” Dr Cuddeford said.
With these goals in mind, the PCH’s palliative care team is now set to offer their services at a new location. Recently, it was announced that WA’s first children’s hospice will be built in Perth at the former site of the Swanbourne Bowling Club in Odern Crescent, Swanbourne. The project is funded by the WA Government, the Child and Adolescent Health Service and Perth Children’s Hospital Foundation.
Health Minister Roger Cook said while there were already good services available in WA, the hospice would give families the choice of accessing care away from a hospital environment.
Construction of the hospice is expected to begin in late 2022, with a planned inauguration in 2024.
Ian Campbell, chairman of Perth Children’s Hospital Foundation, said in a statement that the project team had refined the requirements for the hospice to serve the needs of palliative care patients and families for decades to come.
“The next step is to turn these concepts into formal designs which we hope to have finalised this calendar year,” he said. We look forward to sharing these with the wider community.”
Once completed, WA’s new hospice is set to benefit children with long-term conditions and their families, providing a much-needed service, at an accessible location.