Introduction by Croakey: Strong paediatric palliative care was able to “create a cocoon” around Simon Waring’s four-year-old son Marmaduke, allowing him to be surrounded by love at home.
The 2021 Oceanic Palliative Care Conference has heard of efforts to provide such care for children at end of life in a range of settings and locations, and through the development of Australia’s first National Paediatric Palliative Care Action Plan.
Croakey journalist Linda Doherty reports below, in her second article for the Croakey Conference News Service from #21OPCC.
See below also for more insights from today’s sessions, including Ten Twitter Takeaways, from Croakey columnist Alison Barrett, who is live-tweeting the three-day conference at @CroakeyNews. Also listen to audio interviews by journalist Cate Carrigan.
Bookmark this link to follow our ongoing coverage and also follow this Twitter list of #21OPCC participants.
Linda Doherty writes:
Simon Waring’s grief at the loss of his son, Marmaduke, instinctively turns to gratitude for the rich but short life he was privileged to share and for the paediatric palliative care that allowed the four-year-old to be surrounded by love in his family home.
Waring, a marketing and communications professional, has lived experience of palliative care for both adults and children.
Marmaduke was diagnosed at 15 months with neuroblastoma, a cancer that occurs most often in infants and young children. He died three years later, in 2012, just five weeks after Millsom, his mum and Waring’s wife, died from breast cancer.
Waring says the family’s experience of adult palliative care for 47-year-old Millsom was satisfactory but due to their circumstances was restricted in scope, flexibility and length.
“However, our experience of paediatric palliative care in both the hospital and at home was highly involved, lengthy and positive,” says Waring, a member of Palliative Care Australia’s national consumer panel, who tweeted for @WePublicHealth from today’s Oceaniac Palliative Care Conference.
In an interview with journalist Cate Carrigan for Croakey Voices, Waring talks about how palliative care allowed him and his wife, Marmaduke and his three siblings to enjoy precious time together with psycho-social and medical support.
“We were able to create a cocoon around my son at home, where he was surrounded by family. He was always in touch with a loved one – both physically and emotionally – and it was only really possible through the support of the palliative care team.”
Best practice care
The experience of Waring and other families is influencing the development of the National Paediatric Palliative Care Action Plan, which aims to ensure that children with a life-threatening or life-limiting condition and their families receive best practice care and timely support and information, from perinatal palliative care through to palliative care for young adults.
The National Paediatric Palliative Care Action Plan: Background Literature Review, which reviewed 369 national and international investigations for Palliative Care Australia (PCA), has identified key priorities for the national plan as:
- patient- and family-centred care
- a multidisciplinary approach
- early integration of specialist paediatric palliative care
- advance care planning
- providing care in a variety of settings, and
- considering the specific needs of culturally and linguistically diverse communities, including addressing racism, discrimination and cultural stereotyping of Aboriginal and Torres Strait Islander people.
Lead author Associate Professor Stuart Ekberg, senior lecturer in the Faculty of Health at Queensland University of Technology, told the conference that the care of children with life-limiting illnesses, an estimated 25,000 Australian children, was extremely complex.
That was “due to their physiological resilience, the uncertain trajectory of their illness, the role of parents or guardians as decision-makers, and the ongoing development of a child – physically, emotionally, cognitively, socially, culturally, and spiritually,” he said.
Conference delegates heard that the need for paediatric palliative care will increase as the number of children with life-threatening or life-limiting conditions, currently estimated at 21 million children and young people worldwide, continues to rise.
Ekberg said specialist palliative care services for children are available in most Australian states and territories, but the pace of development has been slower than in other Western countries such as the United Kingdom.
The $3.25 million Federal Government-funded project to develop the national plan is a collaboration between PCA and Paediatric Palliative Care Australia and New Zealand, and is due for completion in 2022.
Different palliative care needs
According to the review, children receiving paediatric palliative care may have conditions only seen in childhood, with half of all life-limiting conditions broadly grouped as neurodegenerative disorders, metabolic disorders, genetic conditions and congenital anomalies, cardiovascular and respiratory diseases and acquired brain injuries.
Diseases seen in adult palliative care, by comparison, often relate to conditions as a result of lifestyle and ageing such as cancers, cardiovascular disease and dementia.
Ekberg said one of the strongest themes to emerge from the review was the importance of patient- and family-centred care through measures such as continuity of care by clinicians who are known and trusted by the child, and better access for families to advanced care planning.
Many children likely to benefit from advanced care planning did not receive it, or received it close to the end of their life when its usefulness may be limited, he said.
Family-centred care extends beyond a patient’s parents or guardians and includes other family members, such as a patient’s well siblings.
“Depending on their individual circumstances, there is scope for even very young patients to participate in their own care . . . parents are typically the most expert about their children, and thus their involvement through family-centred care is essential to maximise quality of services,” the review said.
Rural and regional access
The review also notes that equitable access to palliative care is particularly difficult in regional, rural and remote parts of Australia due to vast distances and limited services outside of major cities
There are seven specialist paediatric palliative care services and three dedicated children’s hospices covering a geographical area of 7.6 million square kilometres on the mainland and 32,160 square kilometres of islands – and no specialist services in Tasmania or the Northern Territory.
A multidisciplinary approach was suggested in the literature review to improve the quality of care in all parts of Australia. It should extend beyond specialist paediatric palliative care to include neonatal intensive care and community healthcare services, including community palliative care, it said.
One such strategy is the Quality of Care Collaborative Australia (QuoCCA) ‘pop up’ model in rural and remote Australia, where specialist paediatric palliative care services support local acute- and community-based services to care for individual children at times of need, from diagnosis and referral through to bereavement.
The QuoCCA initiative is “the clearest example of government-funded collaboration” that had been evaluated across Australian states and territories, the literature review found.
“The ‘pop-up’ approach establishes a tailored network to help facilitate the ‘right care in the right place at the right time’.
“Evidence suggests this approach has enabled QuoCCA to operate successfully across jurisdictional boundaries to improve quality of care, access to care, skills within the clinical workforce, and knowledge within the community,” the review found.
A QuoCCA presentation at the conference said the pop-up model provided for the unmet palliative care needs of children in rural and regional Australia and “builds on the strengths and humanity of local health professionals to empower local teams to provide best care”.
Telehealth is also being trialled in Queensland to improve access to palliative care for the 33 percent of young people with life-limiting conditions who live in regional and remote parts of the state. Many need to travel to city hospitals for care, isolating them from local community supports.
Paediatric Palliative Care Services at Queensland Children’s Hospital in Brisbane established an interprofessional telehealth outreach collaboration linking families, local healthcare professionals and communities to their palliative care expertise.
The trial resulted in 70 percent of paediatric palliative care services being delivered in regional communities in homes, local hospitals and clinics and 18 of the 22 children who died were able to receive end of life care at their home or in their local hospital, the conference heard
Body, heart and mind
The importance of holistic and spiritual care for children and acknowledging their worries like “who is going to look after my goldfish?” were emphasised at the conference.
A session called ‘Rosie’s Story’ led by Adjunct Associate Professor Claire Treadgold explained how ‘Starlight Moments’ was developed after research to give small, positive moments to distract children from serious life events.
Treadgold, National Manager, Research & Evaluation at Starlight Children’s Foundation, said eight-year-old Rosie had died a month ago but her family had given permission to share the story of their daughter who was “full of life” and loved unicorns.
Rosie was diagnosed with Bardet Biedl Syndrome and developed chronic kidney disease but that did not stop her enjoying a home Lego treasure hunt as her Starlight Moment.
The Starlight Moments pilot started in 2018 with the Victorian Paediatric Palliative Care Program and has expanded to include the Sydney Children’s Hospital Network. The Starlight Foundation and clinical teams collaborate to understand each family’s interests and challenges, with each ‘Moment’ specific to their needs to create positive memories and family connection.
Listen to Cate Carrigan’s interview with Claire Treadgold.
You can also read this full Twitter thread of the paediatric palliative care session by Alison Barrett, or via this PDF version.
Also shared at the conference:
Ten Twitter Takeaways
See the latest Ten Twitter Takeaways from Croakey contributor Alison Barrett, who is live-tweeting #21OPCC at @CroakeyNews.
Threads to follow
What is needed for better outcomes for breakthrough cancer pain?
A concurrent session chaired by Professor Gregory Crawford from Adelaide University, Professor Andrew Davies from Trinity College, Dublin, Emeritus Professor Maree Smith from the University of Queensland, palliative care researcher and cancer patient Diana Ferreira, and Dr Jessica Lee from Concord Centre for Palliative Care.
Thead by Alison Barrett at @CroakeyNews: read here
Collaboration and integration: A interdisciplinary approach to care
Includes: palliative care collaboration in a disadvantaged rural NSW region, The Advance Project (team-based initiation of advance care planning and palliative care in general practices), an evaluation of the paediatric palliative care outreach collaborative for children and families living in regional, rural and remote Queensland, the work of a SMART (symptom, management and referral team) clinic for non-malignancy patients and their carers, a focus on spirituality, and an example from West Moreton in Queensland of true integration to benefit a whole community.
Thread by Alison Barrett at @CroakeyNews: read here.
More to come….
See Croakey’s archive of stories about palliative care.
See our coverage of Palliative Care Australia’s conferences in 2017 and 2013.
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