Advance care planning (ACP) is a key requirement to meet Standard 2 of the Aged Care Quality Standards and is often an important step in welcoming a new resident to an aged care organisation. Quality ACP within an aged care organisation involves staff having open, regular conversations with the resident to learn more about the individual’s values and preferences to prepare in advance for a time when the resident may be unable to speak or make decisions for themselves. Such conversations benefit the resident, staff, and family members (including the substitute decision-maker) and can help everyone to come to a shared understanding of the person’s end-of-life wishes.
Given the strong focus that aged care organisations have on ACP, one common challenge faced by staff is when a person with dementia or cognitive impairment is transferred to residential or community aged care with no ACP documentation or prior conversations about their end-of-life care preferences. The ELDAC Helpline receives many calls about ACP including this challenging situation, and we understand that ACP for non-standard cases such as these can be confusing.
Our advice to callers about this topic varies according to the situation, but overall, a person with dementia should not be assumed to lack decision-making capacity. In many cases their decision-making capacity may fluctuate over time, allowing for ACP discussions to be had. Similarly, residents with mild cognitive impairment can discuss their wishes before further decline occurs. A resident with limited decision-making capacity can still be involved in ACP conversations, such as weighing in on their overall wishes even if they are unable to comment on specific end-of-life scenarios. However, if a resident is considered to lack decision-making capacity, decisions must then be made on behalf of the resident by a substitute decision-maker as an Advance Care Directive (ACD) cannot be completed for people without such capacity. Often residents have not nominated a substitute decision-maker, which can make it difficult for staff to determine who to ask when a decision is needed, such as a family member or Guardian of the State. Further information about these areas can be found in the Legal toolkit.
In cases where a resident has capacity to make decisions about their future health care, ELDAC Helpline staff can guide callers to the appropriate state-based forms and templates. However, the ELDAC Helpline has received calls about which of these ACP documents are considered legally binding. Callers frequently ask for clarity regarding the difference between common law ACDs and statutory law ACDs, including information about when an ACD must be followed. We understand this is a common question due to the variability between forms in each Australian State and Territory. Many of these questions are also addressed in the ‘Advance Care Directives’ section of the Legal toolkit.
Overall, the type of calls received by ELDAC Helpline staff has shown us that there are some important knowledge gaps when it comes to ACP, substitute decision-makers and the law. ACP is an important part of caring for a resident and can positively support the resident, their substitute decision-maker(s), and their family to make decisions about the resident’s end-of-life care. Having advance care documentation in place can also prevent or diminish suffering caused by unwanted medical interventions or disagreements between family members about the best course of medical attention for their loved one. In Australia, where rates of dementia are high, substitute decision-makers are commonly required, and even a resident with reduced decision-making capacity can participate in ACP discussions, albeit with support from staff and family.
Further information and resources to assist in navigating the challenging legal issues that can arise with end-of-life decision-making are provided below:
Caroline Litster, Research Officer, ELDAC Helpline Team Member and PhD Candidate, Flinders University