Compassionate Communities: Reframing Palliative Care was the theme of the second Perron Institute Symposium for 2022, held recently at Perkins auditorium.
People attended in person and others from around the world connected online for presentations by international experts who shared their knowledge and latest research findings in palliative care and the important role of compassionate communities.
The Hon Amber-Jade Sanderson MLA, Minister for Health and Mental Health, provided heartfelt anecdotes of her experiences of loss and grief. Topics around death and dying were often viewed as challenging and even taboo, but the Compassionate Communities movement is improving death and grief literacy and offering support, tools and information about accessing care.
In his stimulating video, Professor Allan Kellehear (USA), founder of the Compassionate Communities movement, spoke about the 95 per cent rule. During caregiving, dying and grieving, 95 per cent of our time is spent with family, friends, colleagues, neighbours, pets, online, or alone. Only five per cent is spent with a health professional. The Compassionate Communities movement was built on this principle. To support this, Professor Kellehear highlighted the importance of strengthening informal networks internationally.
Dr John Rosenberg (President of Public Health Palliative Care International and a Senior Lecturer at the University of Sunshine Coast) provided a ‘global to local’ perspective and suggestions on developing intentional and local partnerships.
Symposium Chair Professor Samar Aoun (Perron Institute Research Chair in Palliative Care at UWA) shared the valuable work of the Compassionate Communities Connectors Program which she leads in partnership with the Western Australian Country Health Service (WACHS). The program offers practical and social support for families experiencing life-limiting illnesses. It is a successful example of formal and informal networks working together. Professor Aoun also co-founded and currently chairs the South West Compassionate Communities Network.
Dr Julian Abel (Director of Compassionate Communities UK) spoke about ‘Palliative care major blind spots and the new essentials’. He is the co-editor of the recently launched Oxford Textbook of Public Health Palliative Care. Some of the other symposium speakers, including Professor Aoun, contributed to this comprehensive publication.
Kirsten Auret (Associate Professor of Rural and Remote Medicine at UWA and Clinical Director of Palliative Care for WACHS) spoke about the Compassionate Albany Charter, the importance of communication and information sharing and finding spaces to meet, work and play.
Palliative medicine physician Dr Libby Sallnow (UK) presented key findings of the ‘Lancet Commission on the Value of Death: bringing death back into life’. A key point was that dying is a paradox – many people are overtreated and many more undertreated. A new vision, she said, requires a radical reimagining of a better system of death and dying. Principles included understanding death is a relational and spiritual process and not just a physiological event, increasing conversations and stories of everyday death, dying and grief and rediscovering the value of death.
Contributing to the discussion panel, Geoff Thomas OAM (consumer advocate and ex-scientist) spoke of his experience of losing his wife to motor neurone disease.
The speakers responded to questions on many topics, including the sustainability of such models of care. There was emphasis also on developing ways of working together and across networks.
View the entire Symposium below.:
Note: the Symposium commences at 04:23 into the recording.
Photo caption: The Hon Min Amber-Jade Sanderson and Professor Samar Aoun.