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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.
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.
I often hear people say that once a person enters a residential aged care facility that the caring role provided by the person’s family and friends is no longer required, and yet this couldn’t be further from the truth. Aged care staff encourage family and friends to stay actively involved in a person’s life. There are many obvious reasons why this is so necessary.
Moving homes is generally a stressful and emotional time and, for residential aged care, this can be further exacerbated by the fact that it is often in response to a crisis. Someone’s mother has been admitted to hospital after a nasty fall or the care requirements of someone’s husband has increased because their diabetes isn’t being well managed. Therefore, not only are people having to make important decisions about where they, or their loved one, is going to live, but this is generally during a time when emotions are high and various members of the family may have different opinions.
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”.