Demand for palliative care services has risen by up to 40 per cent since the pandemic began, putting strain on health workers and patients.
Experts say delayed or disrupted access to healthcare services during lockdowns has contributed to many people being diagnosed later, particularly with cancer.
In many cases this meant a more advanced or later stage diagnosis.
During the pandemic Eva Menelaws spent time in palliative care.
At just 36, she was diagnosed with stage 3 breast cancer. She underwent a bilateral mastectomy, chemotherapy, radiotherapy and had her ovaries removed.
Nearly a year ago, Simon Menelaws lost his wife Eva to metastatic breast cancer.
"We had a couple of children by that point. Our son was eight months old, my daughter was four," he said.
"We had about a year where we thought she was in remission and then we discovered she had stage 4 or metastatic breast cancer.
"At that point we knew she was incurable."
In Eva's last few months the family accessed palliative care to help keep on top of her symptoms, such as pain and fatigue.
As a GP, Dr Menelaws knew specialist palliative care could make a difference to her quality of life.
And there were times they needed acute hospital care too.
But with the country in the grip of the pandemic, accessing healthcare had its challenges, as they realised when late one night they went to emergency for pain Eva was experiencing due to liver metastasis.
"At that point visitors were not allowed in the hospital — that was probably the hardest situation for us," he said.
"My wife, she phoned me from hospital on that night and said, 'this is the loneliest I've ever felt in this whole period of illness.
"There are obviously factors that are not within palliative care's remit, but it becomes really clear when palliative care in the acute situation is required."
Simon Menelaws remembers how hard it was not being able to be there with his wife to support her.
"Having quick access to them [palliative care] is really important and unfortunately for my wife and our family, that didn't happen that time, and that was probably partially due to COVID and me not being able to be there advocating for her," he said.
'Magnitude of delayed diagnoses still yet to be realised'
Since the pandemic began, it has placed widespread pressure on the health system. Palliative care is no exception.
Even before the pandemic, demand for palliative services was growing due to an ageing population. But the pressures since COVID hit are greater than ever.
"We're seeing a spike in demand of up to 40 per cent, anywhere between 18 to 40 per cent as a result of the pandemic," says Professor Meera Agar, a palliative care doctor and chair of the Palliative Care Australia board.
Due to COVID restrictions, many families are choosing to have palliative care in the community — such as in the home or in aged care facilities.
But Professor Agar says a more worrying trend is also behind the growing demand.
"People have presented later with a diagnosis of more advanced disease. We do know that people who have had symptoms have not brought those to attention or had access to services to progress through that diagnostic phase," she said.
"The exact magnitude of those delayed diagnoses is still yet to be realised," she said.
Professor Agar said this was particularly the case for people being diagnosed with cancer.
And while she said the workforce was doing everything it could, these pressures could mean patients were not always getting prompt access to care.
"Good palliative care is a timely response based on need," she said.
"And so, when you do have a service that is receiving that volume of increase, we are seeing people who may be having a delayed assessment, and particularly if the referral has come in late there is the situation where sometimes that service isn't received before the person dies.
"People do want to provide excellent palliative care and knowing you can make a difference but don't have the capacity or workforce to be able to get to everyone in a timely way is distressing."
Desire for more flexible home-based palliative care options
Joshua Cohen is a palliative nurse practitioner in Sydney and vice-president of Palliative Care Nurses Australia.
He too has never seen demand for palliative care services so high before.
"Certainly with the beginning of COVID we've seen almost a three-fold increase in the number of patients and families that we're supporting to die in their own home. We're also seeing an increase in residential aged care dying," he said.
He knows measures to keep the community and hospitals safe from COVID have seen more people wanting to have palliative care at home.
"Throughout the various lockdowns hospitals have opened and closed their doors as it's deemed safe to do so. That has been really challenging for people in hospital and their families," he said.
"When we saw that all change, suddenly we're going from an average of five home deaths a month to 15 or 16 home deaths.
"I'd be fairly sure to say that that's a similar pattern across the country."
As the federal government moves ahead with plans to have nurses available 24/7 in aged care homes, Palliative Care Australia says training those nurses in palliative care will help ensure people get timely access to specialist care.
Simon Menelaws knows quality palliative care can make a difference in the last months and days of people's lives.
"It's about equipping us all to really make those last days, weeks and months of our lives still as meaningful and fulfilling as possible," he said.
