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Advance care plans are designed to extend a person’s autonomy following a dementia diagnosis and give them a voice in the later stages of their illness.
When executed well, they can provide comfort to the patient and their support network who are facing an uncertain future.
In practice, however, Dr Denise Craig – who studied the topic for her PhD – says applying the decisions that have been laid out in an advance care plan is not a straightforward exercise.
She says doctors are sometimes uncertain the patient understood their choices when making their plan and whether they intended it for the presenting situation.
“Doctors care about the outcomes of their patients and want to include patients and their families in shared decision-making. Because patients usually complete advance care plans with their GP, hospital doctors often don’t know a lot about the patient’s level of understanding at that time.
“If the patient was not adequately informed or didn’t fully understand something, then their plan might not truly reflect their autonomy, which is the whole point of an advance care plan,” she said, ahead of the National Dementia Conference.
Moral dilemmas
The issue is amplified in morally complex situations, such as a patient’s right to refuse medical advice. Legally, patients have a right to reject this advice, but sometimes their decisions are more nuanced than people think.
“Generally speaking, the patient is the patient expert, but they may not be fully aware of what the future holds in line with their medical condition and the implications of their advance decisions. They might actually know, or they might ostensibly know – and there’s not a lot of transparency around that.
“Unless a person puts clear information in their advance care plan that really sells the fact that they absolutely understood this or that, the doctor who’s receiving the document may be put in a difficult position.”
Grey areas
The problem is even more challenging when it comes to subjective areas, like quality of life.
“People think that their preferences are clear. They will say things like, ‘when I no longer have quality of life, I would like x or y to happen. How does a doctor who has never met you know what quality of life means to you and whether you meant for your plan to apply in the given circumstances? Some say ‘no heroics’, but what does that mean?”
Similarly, people with dementia might request certain provisions if they no longer recognise someone, not knowing that their ability to recognise faces may fluctuate.
“Somebody might be poor at recognising someone at 4:00 in the afternoon but they’re fine at 9:00 in the morning. So, what do we say about that? Do they recognise their family or not? Are we talking about recognising their daughter who’s there every day or the grandson they see when he’s home for Christmas and sporting newly purpled hair?”
Even seemingly objective areas, like continence, can be more complex than people realise.
“People with dementia might lay out plans for when they are no longer continent. Well, what does that actually mean? Continence is quite complicated.
“A doctor who has probably not met you before is trying to sift through all of this and figure out what you meant.”
Conflict between individual, relational and organisational autonomy
Another challenging scenario is where the person who completed the document has done so with the intention of cutting their family out of later decisions. Their right to do so is referred to as individualistic autonomy.
This can sometimes clash with relational autonomy, where families are invited to have a say.
“A person might not trust the decisions their family would make, or want to burden them, so they state their own preferences. But the people who are by the patient’s bedside do have quite a voice and doctors have said they won’t leave them out because it’s often the family who are going to live with the memory of the care provided to the patient.
“Then we might say that the health service has organisational autonomy because hospitals are typically large, multifaceted organisations with complex demands and finite resources.
“This can be hard for doctors. They have some skin in the game, of course they do, they’re trying to do the right thing by their patients and their supporters, and they want to know what the right thing is.”
Public frustration is brewing
As well as posing challenges for doctors, Dr Craig says patients and their support networks can become frustrated when advance care planning doesn’t go to plan.
“No one accidently completes an advance care plan. People do it because they feel strongly that they want to have a say and our laws provide them with a means to do so. When things don’t go to plan, maybe the doctor defers to family to make a decision, some people feel let down. I think there is a great need for more awareness.”
Sharing more expert thoughts on this topic and charting a course forward, Dr Craig will present at the upcoming National Dementia Conference, hosted by Informa Connect.
This year’s event will be held 28-29 April 2026.
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