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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.
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.
Who are we?
The Palliative Care Outcomes Collaboration (PCOC) is a nationally funded program that uses standardised clinical assessment tools to benchmark and measure patient outcomes in palliative care.
The release of the Guidelines for a Palliative Approach in Residential Aged Care (APRAC) and the Guidelines for a Palliative Approach for Aged Care in the Community Setting (COMPAC) were a significant advance in recognising and responding to changing population demography in Australia. They aimed to support the provision of palliative care for older people living in the community or in residential aged care by identifying and evaluating the evidence for care to promote quality of life for older Australians who have a life-limiting illness or who are becoming progressively frailer during old age. The two sets of guidelines were important landmarks nationally and internationally.
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”.