Disconnect between thoughts and actions on advance care planning

The Palliative Care Australia (PCA) national survey, commissioned for National Palliative Care Week, found that 79% of Australia adults believes it is important to think and talk about their preferences for end-of-life care, but only 25% had discussed it with their family, and only 6% had talked to a doctor.
 
Not currently being sick was cited as the most common reason (40%) people had not discussed their wishes, followed by feeling they were too young (30%), the subject making them uncomfortable (24.5%), and not wanting to upset loved ones (21.2%).
 
The PCA survey results show a significant disconnect between what people think is important and the actions they take. National Palliative Care Week and PCA’s Dying to Talk initiative aims to encourage people to confront any fears they may have around talking about dying, reflect on what matters most to them, and start a conversation with their loved ones.
 
Recent figures from a latest Australian Institute of Health and Wellbeing report also reveal that more palliative care patients are dying in hospital, with just over half (51.6%) of all hospital-admitted patients who died having received palliative care prior to death.
 
Despite these figures, most Australians wish to die at home.
 
Associate Professor Joel Rhee, Chair of the RACGP Specific Interests Cancer and Palliative Care network, believes that to help people meet their advance care plans and ensure quality of life is optimised, conversations about dying should not be seen as taboo.
 
‘We are all affected by death – we all die – but still people seem reluctant to have these conversations,’ he told newsGP.
 
The topic can be an uncomfortable one, and Associate Professor Rhee has witnessed both the patient and doctor experiencing unease.
 
‘The doctor and patient are looking at each other, not knowing how to bring up the conversation,’ he said.
 
‘There’s a fear that [talking about dying] might bring up a potentially emotional topic.
 
‘Doctors are sometimes worried about making the patient anxious about their health or giving them the message that maybe they’ve got some incurable disease ... and patients don’t want to upset their loved ones.’
 
But Associate Professor Rhee said that, in his experience, patients actually want to talk about it, they’re just waiting for the doctor to bring it up. So GPs can be reassured that it is safe to approach the topic.
 
Initiating the conversation is the hard part, but the conversation can progress once that hurdle is cleared, according to Associate Professor Rhee. He advises approaching the situation gently, asking standard questions about patient care, which can then present opportunity to broach the topic of end-of-life care.
 
‘Talking about the future and how a patient wants to be cared for should be a fairly standard part of care, particularly for anyone who has a serious or chronic disease, who appears frail, or has a diagnosis of dementia and is likely to lose their decision-making capacity in the medium to long term,’ Associate Professor Rhee said.
 
‘It’s all part of caring for patients and as part of that management process. GPs often get involved with chronic disease management plans and regular health assessments for people over the age of 75 – these are good opportunities for doctors to raise some of these issues with their patients, and carers.
 
Associate Professor Joel Rhee believes that the GP’s role in ongoing care can provide opportunity to broach the topic of end-of-life care.

This is also an opportunity for patients to have the discussion about how they want to be looked after.
 
‘Both things go hand in hand – it’s not just about decision-making and what they want done, it’s also about who they want making decisions for them,’ Associate Professor Rhee said.
 
‘Do they want to spend the majority of that period in the hospital, or do they want to be looked after at home? And this approach might be best, rather than just bringing up the end point of death, which might be confronting.
 
‘Ultimately, it’s not really talking about death itself. Most people don’t talk about the moment they die, it’s more the days, weeks, months, years before they die.’
 
Approaching the topic by giving the patient autonomy in their decision is important, although Associate Professor Rhee emphasises the importance of putting legal decisions in place.
 
‘Instead of talking about just wishes, it’s sometimes worth talking about people,’ he said.
 
‘I find it’s easier to ask the patient, “If you were to become unwell, who will speak for you, who do you want to speak for you on your behalf?”
 
‘Then you could approach the discussion of whether the patient needs to appoint someone legally to make the decision on their behalf, because sometimes the person nominated on the patient’s behalf is not going to legally be the person the doctor will turn to, if they were to lose capacity.
 
‘So if there’s that disconnect or inconsistency it is important that the patient is aware of that so they can take the steps to appoint the person that they want to make the decisions.’
 
Involvement in the patient’s ongoing care is part of fostering a strong patient–doctor connection, Associate Professor Rhee believes, and an effective way of incorporating advance care planning.
 
‘For all of our patients who are potentially at risk – who have a chronic disease or potentially life-limiting condition – we should be having discussions,’ he said.
 
‘And this is a long-term process because GPs have the luxury of time with our patients, in that we can see them over months, years. So just having that conversation gently over months and years is a good approach.’

advance care planning end-of-life palliative care