Yes, it’s uncomfortable, but as a nation we need to start talking about end-of-life care

A new national study from The Australian National University (ANU) reveals a disturbing number of people in this country are not receiving suitable end-of-life care.

The paper, which looked at nine hospitals across Australia and tracked 1693 dying patients, showed only 41 per cent of dying patients will ever see a member of the palliative care team.

The findings show a majority of patients were recognised as dying only late in their hospital stay and only 12 per cent had an advanced care plan, which outlines patients’ wishes for when they die.

“At least 60 per cent of people who die in Australia will die in a hospital setting and are at risk of not receiving appropriate end-of-life care,” lead author Professor Imogen Mitchell from ANU, says.

Mitchell, an intensive care specialist based at Canberra Hospital, says while a high percentage of elderly patients and those in aged care have an advanced care plan, their plans are often illogical and counterproductive.

“Sometimes the plans are so prescriptive, it makes my life as an intensive care doctor quite difficult.

“I’ll give you an example. A lady I saw last week, she was actually 85, she’d gone into aged care eight months ago, she’d really lost interest in life.

“Although she could do her activities of daily living, she definitely needed support.

“On her advanced care plan she did not want intravenous antibiotics, but she did want to be resuscitated.

“So as an intensive care consultant, I’m thinking ‘you want all active treatment, except you won’t have an IV antibiotics’ … I just sometimes wonder whether the plan is logical?”

At least 60 per cent of people who die in Australia will die in a hospital setting and are at risk of not receiving appropriate end-of-life care.”

_{Prof Imogen Mitchell}

It would seem incumbent on aged care facilities to be at least having conversations and be better preparing those in their care to have a detailed plan in place.

“I think COVID to some degree did actually trigger that,” Mitchell says.

“I’m also the clinical director for the COVID response in ACT, and I was rather concerned that I didn’t really have a good feel of what’s happening in aged care services.

“So out of 29 [facilities] we covered, I personally did 10, and one of the questions we asked was ‘how many of your residents have an advanced care plan?’.

“I would say probably between 80 and 85 per cent did have a plan – which is excellent – but whether that plan is actually meaningful is probably my next question.

“So it’s great that the conversations are being had … [but] sometimes the plans don’t make sense.

“I think we’ve just got to have the conversation, have it make sense and make sure that those around you understand what that plan is.”

Mitchell believes across the board more thought needs to be put into palliative care well in advance of end of life.

“As a community, I think we just need to really be more proactive about ‘what’s my journey going to look like? What would I like it to look like? And have those conversations with those that are going to be probably left with making the decisions,” she says.

“Because when we leave it so late, at least 30 to 40 per cent of people in their last 48 hours are no longer able to join in that conversation.”

The researchers found a complex range of factors contribute to suboptimal end-of-life care, including failure to identify patients in their last months of life, substandard communication with patients and families, and failure to link medical teams.

As a community, I think we just need to really be more proactive about ‘what’s my journey going to look like? What would I like it to look like?”

_{Prof Mitchell}

“Patients experience inadequate palliative interventions such as delayed pain relief and we found inappropriate and futile investigations and treatments,” Mitchell said.

“Engaging the right end-of-life care allows for the best patient experience.

“No one would like to die in a busy and noisy emergency room with other patients when you could have had a much more peaceful dying journey if planned in advance.”

Mitchell says for a range of reasons, discussions around better organising end-of-life care and prioritising it are often put in the ‘too hard’ basket.

“This is one of the problems with end of life care, it crosses boundaries, whether it be family boundaries, whether it’s a state boundary, whether it’s a discipline boundary, whether it’s between federal and jurisdictional boundaries…

“Talking to someone at a Commonwealth level, I said, ‘so, what would be the best way of ensuring that we have better end-of-life care?

“He said, ‘well, it’s very difficult’, and I said ‘Yes, I know it’s difficult, but we need to start somewhere.'”

Mitchell says despite the whole subject of dying being challenging and uncomfortable, end-of-life care is too important to be simply swept under the carpet and put out of mind.

“As soon as you mention ‘palliative care’ people gasp, and say, ‘I’m dying!’

“Well, actually, we’re all dying, but they think they’re about to die.

“I think that palliative care needs to do another PR exercise and rebrand itself and talk about the whole journey and bringing both carers and patients with them on that journey so that they get the best experience possible through that dying process.”

While much needs to be done in the are of end-of-life care in this country, Mitchell says there is already very handy guidance and advice available.

“A gold standard of end-of- life care is outlined in a consensus statement by the Australian Commission on Safety and Quality in Health Care and should be followed across the nation,” she says.

“By following these standards our dying patients and their families and carers will have a better experience.”

The paper is published in Australian Health Review.

• A range of scholarships are now open for aged care workers to attend the Oceanic Palliative Care Conference being held on September this year. Applications close on July 5. To check your eligibility and apply for the Oceanic Palliative Care Conference 2021 click here.