Stress on families ‘immense’ as burden of caring for dying relatives spikes under COVID

The COVID-19 pandemic has not only changed the way Victorians live, it has changed the way they are dying, with the number of families providing palliative care for loved ones at home almost doubling in some Melbourne suburbs over the past six months.

Key points:

  • The number of families caring for dying loved ones at home has soared in Melbourne since COVID-19 hit
  • Palliative care support services are under “immense” strain and some families may not be getting the help they need
  • Some families are juggling end-of-life care while dealing with other lockdown stresses, such as homeschooling

The surge has led to greater stress in families already struggling with the ramifications of COVID-19 lockdown measures, and “immense” strain among palliative care support staff, who say they cannot meet all the needs of everyone requiring their help.

More than 80,000 Australians require palliative care each year.

Eastern Palliative Care (EPC) said the percentage of its patients choosing to die at home in the outer-eastern suburbs of Melbourne had leapt from 48 per cent prior to the pandemic to as high as 83 per cent during some weeks since the city’s first lockdown in March.

Michelle Wood, chief executive of Banksia Palliative Care, which services Melbourne’s north-eastern suburbs, said 65 per cent of palliative care patients were now choosing to die at home — compared with 35 per cent who were opting for hospital care in their last days.

Prior to the pandemic, about 45 per cent of terminally ill patients chose to die at home, while 55 per cent died in hospital or in hospices, Ms Wood said.

She said the increase was largely driven by relatives’ fears that strict visitation limits at hospitals during the lockdown would mean terminally-ill patients would “die alone, surrounded by people covered in PPE”.

“The restrictions around hospital admissions has seen fewer people opting for hospital care and has removed the option for respite,” Ms Wood said.

Families influenced by aged care coverage

Ms Wood said many carers underestimated how difficult providing end-of-life care would be — especially during one of the most stressful periods in living memory.

“The challenges for carers range from the obvious, watching a person that you care about deteriorate and ultimately die, to the physical demands as that person deteriorates,” Ms Wood said.

“Not only in needing to care for them and assist them in their daily activities, but also picking up their role, and chores and all of the other responsibilities that may have been shared in the past.

Recent media coverage of appalling conditions in nursing homes had also influenced some families’ decisions to provide end-of-life care for their relatives at home.

As a result, palliative care support providers say they have never been so stretched and many families who have chosen to care for dying relatives at home may not be receiving all the support services they require.

Services stretched

Lady in black top smiling at camera

Palliative Care Australia chair Professor Meera Agar says people need access to more palliative care services.(Photo: Supplied Palliative Care Australia)

Palliative Care Australia chair Professor Meera Agar said the palliative care system needed an overhaul, as not all Australians requiring end-of-life care had “access to services when they need to, particularly at home and in community settings”.

EPC chief executive Jeanette Moody said the centre was dedicated to providing the highest standards of care for its patients, but the surge in at-home care meant its services had been stretched, and many staff were stressed.

“The impact of COVID-19 on staff has been immense,” Ms Moody said.

“Our staff are members of the community just like our clients and the impact of lockdowns, school closures, and job losses of family members or partners has all impacted on staff.

Jeanette Moody

Eastern Palliative Care CEO Jeanette Moody says families and support staff are under immense strain.(Supplied: Eastern Palliative Care)

Ms Moody said the average number of calls to the EPC’s overnight triage service for families providing palliative care at home leapt by 59 per cent in March to 367 calls (more than 11 per night), fell after the first lockdown eased, but soared again to between 300 and 350 calls during July and August when Melbourne was in the grip of the second wave.

“In the initial months of the pandemic, we were also getting calls from clients asking if we could supply foods and groceries as clients and carers did not want to expose themselves to the risk of getting COVID-19 in a public place,” she said. 

She said many families were “having to make very difficult decisions about which family members/friends will be able to see their loved ones at the end of life”.

A lady in black top smiles at the camera.

Palliative care specialist Kylie Draper says the number of families choosing to provide end-of-life care for loved ones at home is soaring.(Supplied: Eastern Palliative Care)

Increase in demand for services

Kylie Draper manager nursing and medical services at EPC said that in the 30 years she had worked as a palliative care nurse specialist, she had never seen such a dramatic increase in the need for palliative care support in the home.

The increase in the demand for services, while adhering to the additional COVID-19 infection-prevention measures, has been a challenge for both Banksia and EPC.

EPC family support worker Trish Delany said family played an integral role in the spiritual wellbeing of patients living with a terminal diagnosis, and it was understandable that people did not want their loved ones to die in isolation.

Lady in bed smiling

Palliative care services support patients and their families when they choose to spend their last days at home.(Photo: Supplied Eastern Palliative Care)

As a result, many patients and their families who would normally choose an inpatient service for their end-of-life care, were now choosing to die at home.

“It takes a specialised team of palliative care nurses, doctors and therapists to ensure patients, carers and their families have the support they need to provide the care for these patients at home.

“We are continually inspired by families who take on the important role of providing end-of-life care for patients in their home — many finding it very rewarding.”

Banksia Palliative Care’s Ms Wood said: “We have an exceptional team of people who have come to work every day, worked very hard making a real difference in peoples’ lives, and have flown well under the radar throughout the entire pandemic … as palliative care is prone to do.”

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