Decision-making capacity is the key

Patients may ask why advance care directives cannot include any intentions about VAD, writes Advance Care Planning’s Xanthe Sansome.

What are the most common questions people ask about advance care planning in general, and specifically in relation to VAD?

The main questions are, ‘When should I consider advance care planning?’ ‘What should I write?’ ‘Can it be overridden?’ ‘Can people with dementia do advance care planning?’ ‘Can I express in my advanced care directive (ACD) a preference for assistance in dying if I experience a debilitating medical event?’

Have doctors and others found challenges in explaining the differences and boundaries between voluntary assisted dying (VAD) and ACD in other states where VAD has been introduced?

The short answer is no. Both represent the right of a person to choose. A person can complete an ACD and they can also request VAD, however they cannot request VAD in their ACD. An ACD does not come into effect until the person loses the ability to make decisions for themselves, while you must have decision-making capacity to participate in and consent to VAD. So, they are actually mutually exclusive: VAD must happen before a person loses decisionmaking capacity, but an ACD only comes into effect after a person has lost this capacity.

Have you found that people expect to be able to nominate a wish for VAD in their advance care planning documentation?

Yes, people complete an ACD and express their preferences for future health care. VAD may be one of these preferences, despite the fact that assisted dying cannot be enacted if a person loses decisionmaking capacity as described above. How important is it to complete ACD before an illness robs a person of decision-making capacity?

It is vitally important that a person can articulate their directions and preferences for care and treatment and appoint a substitute decision-maker while they still have decision-making capacity. If this capacity is evident at the time of writing, people should not question what is written. None of us know when we might experience a stroke, other cerebral event or develop dementia that suddenly or progressively makes us unable to make decisions. We all need to choose now who we want to make decisions on our behalf and what it is we would want them to say (and tell them!). It is the strongest legal protection available to ensure the person's wishes will be respected.

Why does the Australian uptake of formal advance care planning documentation remain low?

Overseas studies suggest one of the reasons is that health professionals do not have sufficient knowledge, skills, confidence or time to start the conversation or know when to enact a document. Individuals report the main reasons are their age, health, emotion, lack of knowledge of process and rights, fear , and concerns over broken relationships and whether it will be followed correctly.

Australian researchers found residential aged care homes did not implement ACP for similar reasons and also a lack of resource and system support or residents’ cognitive capacity.

While most of us accept that death is inevitable, we do not like to think of dying as anything other than ‘dying peacefully in our sleep’. Despite more than 70% of Australians wanting to die at home, less than a quarter achieve this. People are not aware they can have a choice, do not want to be the one to raise it with clinicians and may believe, incorrectly, that treatment is ‘all or nothing’. Many cultures say death is a taboo topic and some religions believe life and death are pre-determined by their god.

What is the role of the GP or other clinician in supporting a patient in completing the advance care planning process?

The GP should initiate or progress the conversation about advance care planning. They should answer questions the person has, and be open about the likely trajectory of ageing and any conditions. They may be asked to sign an ACD, so they should be willing to discuss best medical practice and the realities of the decisions and preferences (for example, CPR is likely to have an X% success rate and has a XX% chance of causing a fracture to ribs). How has the pandemic affected people’s consideration of their end of life preferences and advance care planning?

Advance care planning became urgent health care planning in the pandemic. There had been an increased interest in people's wishes, and when people contract COVID the focus is on imminent care. Since COVID arrived, people's awareness that they might get very sick very quickly has improved their attitude and willingness to participate in end of life planning. Do most people who complete ACD do so to ensure their wishes are followed, or to support loved ones at that time, or both?

I think they are both key motivators –people want their wishes respected, but in doing so they hope to make it easier for their family.

National Advanced Care Planning Week <https://www.advancecareplanning.org. au/nacpweek>, from 20 to 26 March 2023, is an opportunity for people to learn more about advance care planning.