Introduction by Croakey: As with everything in our lives, the coronavirus pandemic has also deeply disrupted how we end them.
The impact of COVID-19 on palliative care will be one of many important discussions to take place at the 2021 Oceanic Palliative Care Conference, to be held online from 7-10 September, bringing together international and national healthcare professionals.
Croakey journalist Linda Doherty will provide in-depth coverage of the conference for the Croakey Conference News Service, and previews the international event below.
Linda Doherty writes:
The COVID-19 pandemic has disrupted so many of the end-of-life practices that families and other loved ones took for granted, not just in being able to attend funerals and other burial rites, but even being able to sit by the bedside and hold the hand of a dying relative or friend.
Professor Meera Agar, chair of Palliative Care Australia, said that disruption has highlighted the importance of human connection for our health and wellbeing, particularly in palliative care where social and spiritual care complements physical care for complex health needs and yet is still so often on the periphery of care.
“There’s a tension when you’re also trying to develop a public health response but it’s highlighted how much we value these practical things, this human connection for health and wellbeing, as well as the rituals around grief and bereavement,” she told Croakey.
“From very early on in the pandemic we felt there was a huge role for palliative care because we bring experience in dealing with complex health needs and balancing multiple decisions to optimise physical, social and spiritual care.”
The impact of the pandemic on palliative care is among a suite of topics to be canvassed at PCA’s 2021 Oceanic Palliative Care Conference from 7-10 September.
The conference theme ‘Invest Challenge Change’ urges governments to make good on commitments to invest more in palliative care and to challenge existing thinking that places palliative care on the periphery of health systems.
Challenges for palliative care
Agar, a palliative care medicine physician in south-western Sydney and Professor of Palliative Medicine at the University of Technology Sydney, said the conference theme highlighted the challenges ahead for palliative care.
The World Health Organization describes palliative care as “an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual”.
#210PCC speaker Dr Naheed Dosani, who provides palliative care to homeless people in Canada, describes it as “the intersection of healthcare with humanity”.
Yet palliative care remains on the periphery of health systems around the world, with continued issues of inequity of access, workforce shortages and lack of community awareness of what palliative care actually involves, Agar said.
Every year in Australia around 40,000 people who die have received palliative care but PCA research shows that an additional 40,000 people could benefit if they better understood what palliative care was and how to access it.
A PCA report last year by KPMG looked at palliative care through an economic lens, finding that an additional annual investment in Australia of $365 million would save $464 million in other health system costs.
“We need investment in both the individual parts – at the hospital level, residential aged care, community aged care, community services – but the glue that synthesises and coordinates all those pieces is often forgotten and people fall through the cracks,” Agar said.
“The challenge is not about doing more of the same. We have to think about what we’re investing in and how we can join up the pieces in what is a very piecemeal system.”
Needs of marginalised communities
The biennial Oceanic Palliative Care Conference, held since 1990, attracts up to 1,000 palliative care practitioners and healthcare professionals from across the Oceania region, including Australia, New Zealand and the Pacific.
This year, for the first time, it will be held completely online due to pandemic lockdowns and travel restrictions, with conference sessions recorded and available for delegates to view for the following 12 months.
With a focus on those who would particularly benefit from palliative care, #21OPCC has sessions on palliative care for children and the elderly; ground-breaking services and programs for marginalised communities, including the homeless, Indigenous Australians, asylum-seekers and LGBTQ+ communities; future investment needs; clinical practice; and international perspectives.
Keynote speakers include Distinguished Professor Patsy Yates, Executive Dean of the Faculty of Health, at Queensland University of Technology; Roberts Yates, Executive Director of the UK Centre for Universal Health; Professor Katherine Sleeman, Laing Galaza Chair in Palliative Care and National Institute for Health Research Clinician Scientist at London’s King’s College; Canadian Dr Hsien Seow, Research Chair in Palliative Care and Health System Innovation at McMaster University, Ontario; and Dr Naheed Dosani, Canadian palliative care physician and health justice advocate.
More than 120 scholarships have been funded by the Federal Department of Health, PCA and Flinders University so that not-for-profit organisations and university students in Oceania and Australia, including Aboriginal and Torres Strait Islander practitioners, can attend the conference.
Investment in aged care
PCA CEO Camilla Rowland told Croakey there is a need for more investment in paediatric palliative care and better integration of children’s services with primary care, as well as specific palliative care and end-of-life strategies for aged care, Aboriginal and Torres Strait Islander people, culturally and linguistically diverse (CALD) communities and people with disability.
“We’d certainly like to see a far greater investment in palliative care in aged care as core business. At the moment in Australia palliative care is not offered in most aged care facilities,” she said.
The Royal Commission into Aged Care Quality and Safety has provided an opportunity to provide advice to government that further investment for the palliative care workforce to attend aged care facilities is needed, as well as training for the aged care workforce in palliative care, she said.
However, Rowland said palliative care is for anyone of any age – from babies to older adults – who have been diagnosed with a life-limiting illness, and it can be provided alongside curative treatments, or when those treatments have ended.
PCA is working with Paediatric Palliative Care Australia and New Zealand to develop the Federal Government-funded Paediatric Palliative Care National Action Plan to support health professionals respond to the specialist needs of children with life-limiting conditions, as well as the needs of parents and carers.
“Increasingly we’re really thinking from the perinatal period,” Agar said.
“For parents who are about to have a baby with a life-limiting illness there needs to be good palliative care. It’s a highly specialised area of expertise so we need to look at access as many children will spend a large proportion of their time in the family home.”
PCA’s annual National Palliative Care Community Survey this year found that awareness of palliative care was high among Australians but most people did not understand its scope. Only four in 10 Australians were aware they could first ask for palliative care when they were diagnosed with a terminal, chronic or degenerative illness.
Rowland said the conference would bring energy and expertise to conversations about palliative care from a workforce that was “genuinely passionate about the quality of end-of-life care”.
“To be part of someone’s journey, in the sense you are helping them have quality of life, is incredibly rewarding and it really cuts through all echelons of society,” she said.
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