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The views and opinions expressed in our blog series are those of the authors and are not necessarily supported by CareSearch, Flinders University and/or the Australian Government Department of Health.
Australia is a dynamic multicultural country. Ours is a nation that is home to one of the world’s oldest culture and millions of people belonging to 270 ancestries. We need quality evidence to be able to address the needs and challenges faced by our older CALD Australians and provide them person and family-centred palliative care. Mary Patetsos discusses providing person- and family-centred palliative care for a culturally diverse Australia and the importance to have resources like CareSearch.
In 2017 Palliative Care Australia undertook a review and update of the reference documents A Guide to Palliative Care Service Development: A population based approach and Palliative Care Service Provision in Australia: A planning guide. Together these key reference documents have provided a framework for the ongoing development of palliative care policy within the health care system for the last fifteen years.
Health professionals need to know the law that governs withholding and withdrawing life-sustaining treatment. Law is not at the centre of the clinical encounter, but it is part of the regulatory framework that governs these decisions. Failure to know and follow the law puts health professionals and their patients at risk. But we know there are gaps in health professionals’ legal knowledge in this area and this is not surprising either, given how complex and difficult this field of law is.
As a young doctor I spent some time working in a palliative care hospital in the early 90’s. It was such a privilege to be working with people at end of life - with the opportunity to make a difference to quality of life and well-being of patients, and their family members. That experience made me decide to devote my career to Palliative Medicine.
I had some experiences at that time that stayed with me.
I had a patient, Marion, who had been a school principal. Marion had suffered a severe stroke. She had survived but was very incapacitated, confined to bed and unable to communicate. She was being kept alive, surviving on a feeding tube, and facing a life of care and dependence. Her specialist was very committed to her survival.
During National Palliative Care Week, the University of Technology Sydney (UTS) hosted a forum on dementia care planning facilitated by the Director of The Centre for Cardiovascular and Chronic Care, Faculty of Health, Professor Jane Phillips. Imelda Gilmore, an Alzheimer’s Australia NSW Dementia Advocate and wife of a person with dementia, opened the forum by highlighting the importance of “getting the word out to have conversations about end of life early on”. A recurring theme at the forum was the need for care decisions to be person-centred and focused on what the person with dementia would have wanted were they able to speak for themselves, rather than the wishes of surrogate decision-makers. Lynn Chenoweth (Professor of Nursing at the Centre for Healthy Brain Ageing, The University of New South Wales) defined person-centredness as respecting the person with dementia’s “values, beliefs, history, likes and dislikes … all of the things that make them unique”.