Your Choice: Now and Always
A blog post written by Jennifer Tieman
This week is National Advance Care Planning Week (NACPW), an initiative of Advance Care Planning Australia (ACPA). Run between 21-27 March 2022 the initiative reminds us that important life choices are planned, and we all need to talk about our choices for care at the end of life. The tagline for NACPW is “Your choice. Now and always” and this tagline speaks to the core of advance care planning (ACP). It is the individual’s choice, and it is this voice that must be heard in discussions, planning, and providing care.
In 2021, a national framework for ACP documents was finalised and the document states that it represents the commitment of the Australian and state and territory governments to support all people to consider and provide direction on their future care, if they choose to do so. The framework acknowledges that ACP is based on the fundamental principles of self-determination, dignity, and avoidance of suffering. ACP is also seen as integral to delivering person-centred care. The framework also reminds us that ACP is not just about the document but about the conversations that shape an understanding of choices made by the person. It is a dynamic process where conversations can lead to completion of a specific directive, documenting wishes and preferences, nominating a substitute decision maker, deciding not to create a document, or changing and updating existing documents. Irrespective of the outcome, the process of sharing with others what is important helps decision makers and care providers know what we would have wanted. Documenting preferences is also seen as important because it provides a mechanism by which health and aged care systems can access and address the person’s choices when the need arises.
Australia is not alone in examining how to support discussions by both healthy and unwell citizens about their end of life wishes and in enabling people to document and share their wishes with those who will be providing their end-of-life care. Last week Universal Principles for Advance Care Planning were published in the UK. They were developed by a coalition of 28 partner organisations. This approach also highlighted the centrality of the person in the planning, noting that all discussion with the person should convey a sense of ownership of the process. The coalition hopes that these universal principles will drive improvements in inclusion, equality, and diversity everywhere across the country.
As we think about ACP, we do need to consider how we develop systems that enable access, how we support individuals and communities in complex discussions, and how we train and build capability in health and aged care systems. However, we need to remember that all ACP starts with a conversation that affects an individual. NACPW reminds us that it may be time to start that conversation.
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Jennifer Tieman
Director
Research Centre for Palliative Care, Death and Dying & CareSearch