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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 how we make decisions, plan for an unknown future, and respond to global changes beyond our control. Judith Lesson AM shares her views on the pandemic, and why it is important for all of us in the community to receive reliable and accurate information to make informed decisions.
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”.
This is one of the questions that will be addressed in the Dying2Learn MOOC. As a palliative care doctor, it has been wonderful to have the opportunity to start this conversation, and I am looking forward to the interactions with real anticipation.
In developing this section of the MOOC I have tried hard not to assume too much about what participants should think or believe, or to push any particular perspective. Obviously that is a bit difficult for me, as my work for over a decade has been in the smoke and dust of the clinical battlefields where dying patients often end up i.e. acute hospitals. As palliative medicine clinicians we often feel like we are galloping in to rescue people from the hospital system, and (speaking for myself, anyhow) we can sometimes be a bit black and white about things. What I have learned though, over and over again, is that it is not simple for people. Many are unprepared for the decisions they will need to make, and - like BREXIT perhaps!- may not fully understand what they have let themselves in for until it is too late.