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Advance care planning: lessons from a study of Tasmanian enduring guardianship forms

Uptake of available instruments is low, and death is the “elephant in the room”

There is an ongoing global conversation about death and the process of dying. Despite half a century of clinical, academic and public policy activity by specialist palliative care workers — and by many others, including health administrators, academics, artists and writers — it is common to hear the same issues recycled with the oft-repeated comment that we “do not do this well”. Clinicians struggle with treatment abatement decisions and issues relating to causes of and responsibility for death. Pathways to death (“death ways”) are changing, with increasing numbers of people dying in old age, slowly over 1–2 years, with multiple comorbidities (which often include dementia) and greater numbers of significant medical decision points.

The public often has expectations of curative capacity that exceed reality (fed by a technically optimistic health industry) on the one hand, and exhibits widespread concern about bad dying on the other. Although improvement of clinical care is essential, it needs to be supported by public health promotion activities aimed at improving preparation for the end of life.

Lack of capacity…