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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.
COVID-19 is changing the way we understand our health systems, our society and ourselves. Palliative care is now a critical part of a response to the pandemic nationally. Professor Jennifer Tieman discusses the need to provide relevant information to health professionals, aged care workers, and patients, family and carers, and how the new CareSearch COVID-19 and Palliative Care hub can support them.
Providing culturally appropriate and person-centred palliative care for Aboriginal and Torres Strait Islander patients can be complex. Fiona Walls from the Lowitja Institute discusses how the findings and resources developed from Managing Two Worlds Together study can help.
If you were unable to speak for yourself, who would you want to speak for you? And more importantly, what health care decisions would you want them to make? Discussing your values and preferences helps determine what would be important to your future health care. Linda Nolte, Program Director for Advance Care Planning Australia discusses National Advance Care Planning Week and the importance of the making our future preferences known.
Mental health and palliative care patients: the “treatment gap”
Sadness, social withdrawal, depression, loss of hope; if a non-palliative person experiences any of these feelings, the health care system has well established processes and services to treat them. Why then do we accept this as ‘normal’ and ‘to be expected’ for those facing the end of life? Why does the system hesitate to ‘label’ these vulnerable people with a mental illness tag?
Mental illness in the terminally ill is too often underdiagnosed and undertreated. It’s frequently ignored – “well of course you’re having trouble coping, you’re dying,” – or pushed aside in favour of addressing clinical symptoms. While existential and psychological care is acknowledged as being crucial to providing quality end of life care, people continually report that theirs, their families and care givers needs in this domain are not addressed.
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”.