Treatable conditions, family tensions can see advance care directives overruled

Doug Hendrie

7/11/2019 3:57:34 PM

Directives are meant to enshrine patient autonomy near the end of life, but doctors may be inclined to act in what they consider the patient’s best interest, new research has found.

Man in hospital bed
End-of-life care should be made easier with advance care directives – but is that always the case?

A new study has found that many doctors experience internal conflict when carrying out a patient’s legally binding wishes, particularly when the directives are vague or not current, or when the medical condition seems reversible.
The BMJ Open study led by Advance Care Planning Australia researchers gave 21 doctors at a Victorian hospital real-life scenarios to uncover how doctors use advance care directives in challenging circumstances.
The study found family opposition or a lack of access to the directives to be other reasons for overriding advance care directives.
Doctors in the study also struggled to follow the legally binding directives if they felt a patient’s best interests lay in another course of action, often questioning whether non-medically-trained people are adequately equipped to make complex medical decisions in advance.
Advance Care Planning Australia Program Director Linda Nolte believes the research speaks to the challenges doctors could face when enacting advance care directives.
‘We can’t underestimate the real-world dilemmas doctors sometimes face in enacting advance care directives, but, equally, we can’t lose sight of the fact [they] are legally binding documents,’ she said.
‘Competent adults have the right to make decisions in advance as to how they wish to be cared for, and quite rightfully they expect that everyone involved in their care will do their utmost to respect their choice.’
Ms Nolte told newsGP she was not surprised by the findings.
‘The study shows doctors have a lot to consider when they’re looking at advance care directives. It shows doctors are putting in place robust consideration,’ she said.
‘Ultimately, we want them to uphold a person’s autonomy and their preferences for future care.’
Ms Nolte gave the hypothetical scenario in which a patient with a chest infection that could easily be overcome with antibiotics, but who had an advance care directive stating no antibiotics were to be given.
‘That’s an example of the dilemma, where a doctor would think this is something they could recover from,’ she said.
‘They should [follow the advance care directive] – it’s meant to be legally binding.’
But Ms Nolte acknowledges many doctors will have legitimate concerns regarding the validity of the document, such as whether it was witnessed and signed. 
‘This study found that if doctors had questions around the validity, they were more likely to act in the patient’s best interest [rather than following the advance care directive],’ she said.
‘That tells us we need to have a focus on doing quality directives with their GP and family, which will make it far more likely to be up to date and accurate.’
Family tensions represent another common thorny issue in advance care directives, Ms Nolte said.
‘We need more discussion around end of life. We’re all going to die – that is something we know,’ she said. ‘So we need to be more comfortable with these conversations.
‘These advance care directives allow people to consent to, refuse or withdraw treatment. If the family has a conflict with the directive, they should be able to see what the person has put in writing.’
GP and Chair of the RACGP Cancer and Palliative Care Specific Interests network Associate Professor Joel Rhee told newsGP the study is consistent with his own group’s 2013 research, which focused specifically on GPs and found that problems with implementation are multifactorial.
‘This study is mainly on hospital-based clinicians, so it’s a different setting [but] our study found similar issues around the futility of treatment where a doctor was judging the best way forward when it was not consistent with what the patient requested,’ he said.
‘That creates challenges.’

Associate Professor Joel Rhee said the long-term relationships GPs often have with patients means many believe they are well placed to discuss advanced care directives.

Earlier research undertaken by Associate Professor Rhee’s group found doctors tended to find it most difficult to follow advance care directives when they felt the patient was not adequately informed of the medical issues.
‘Let’s say a patient thought they had a good chance of living through their end-stage cancer and the doctor didn’t agree; then the doctor has a problem,’ he said. ‘The patient might want everything done, but the doctor would have real trouble accepting that.
‘But when it’s around quality of life – a doctor might think a patient’s quality of life was good, but if the patient felt differently, we found that doctors tended to respect that.’
Associate Professor Rhee is surprised that the issues are still so present in Victoria, which passed ‘really clear’ legislation in 2016.
‘You’d think that such clear-cut legislation would have minimised these challenges, but it hasn’t addressed all the problems,’ he said.  
‘It might be worthwhile focusing our energies on applying ethics and the law to these situations, rather than just saying, “Here’s the law”.
‘It shows there’s a need to work through some of these scenarios and discuss them with others.’
Associate Professor Rhee said GPs tend to have a healthy way to work with patients’ different belief systems.
‘As GPs we have a good perspective on this. We get patients with all sorts of beliefs,’ he said.
‘We’ve learned to work with patients, and not say they’re necessarily wrong but to work with them and respect their beliefs while trying to guide them.’
Dr Karen Detering, Medical Director of Advance Care Planning Australia, recently appeared on The Good GP podcast.
She stressed the importance of advance care directives for people as a way to avoid the ‘impossible position’ where family members are asked to make end-of-life decisions without ever having spoken to their loved one about the topic.
Podcast host and RACGP WA Chair Dr Sean Stevens asked Dr Detering why so few patients seem interested in these directives.
‘I raise advance care planning at every over-75 health assessment, and I must do hundreds every year. There are only ever a handful interested in having an advance care directive done,’ he said.
Dr Detering said that the issue is the fact it takes time to think about the subject.
‘If the first time we’re talking about it is when we want patients to do something, there’s not enough time to think about it. We encourage starting much earlier,’ she said.

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Dr Anthony Michael Franklyn   8/11/2019 8:25:19 AM

‘This study found that if doctors had questions around the validity, they were more likely to act in the patient’s best interest [rather than following the advance care directive],’ she said.
The patient's best interest is a judgement call and using this term as if it is something the doctor is capable of making independently, encourages we doctors to think we are the final arbiters of this.
Clearly if a decision goes against a patient's advanced care directive, it is "against the patient's best interests".