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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.
I had the pleasure of coordinating the May edition of the CareSearch Allied Health Hub (AHH) newsletter in which we chose to highlight Motor Neurone Disease (MND) for three reasons:
1. Allied health practitioners play a very important role in a multidisciplinary approach which improves quality of life, for both patient and family.
2. Palliative Care week and MND week both occur in May and it was an opportune time to highlight MND.
3. MND is entering the sphere of practice for more allied health practitioners and it has been brought to the public’s attention recently with fundraisers like “Freeze MND”.
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”.
“Palliative care is everyone’s business”
This was the theme of Palliative Care Australia’s advocacy in 2013. While this message aimed primarily to promote understanding at the wider community level, it is important for all health care providers to recognise the role they play in palliative care. All health disciplines, in specialist and non-specialist roles, in acute, community and aged care settings, cross paths with people affected by life-limiting illnesses. To provide care reflecting the values and principles of palliative care, the health workforce needs to be appropriately prepared and updated through postgraduate learning, professional experience, and ongoing professional development.
With 52% of Australians dying in acute hospitals, end-of-life care is essential knowledge for health care professionals.
However, health care professionals working in acute hospitals can find themselves challenged by patients with end-of-life care needs. Doctors, nurses and allied health professionals can be in a situation where they do not know how to best respond to a patient with end-of-life needs. Appropriate end-of-life interventions can be missed.