During COVID, diagnoses were delayed. Now there’s been a huge spike in demand for palliative care

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.”

A happy couple embracing with mountains in the background.
Simon Menelaws and his wife Eva. In Eva’s last few months the family accessed palliative care.(Supplied: Simon Menelaws.)

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.

A woman at a table.
Professor Meera Agar says the pandemic has seen demand increase for palliative care. (Supplied: Professor Meera Agar.)

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.

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