Covid-19 has terminally ill in Victoria fearing dying alone if they go into palliative care

People who are dying from terminal illnesses in Victoria are scared they will die alone if they go into a palliative care unit or hospice care, the Cancer Council says.

The latest data available from the council’s national support line showed that in the second last week of August, 24% of the 217 calls and emails from Victoria were related to concerns about the impact of Covid-19. This compares with 8% in the last week of July.

Cancer Council Victoria’s head of strategy and support, Danielle Spence, said many people were upset about the impact of stage four restrictions. People who were at the end of their lives reported feeling isolated, afraid and lonely, unable to spend their final days with the people they loved and doing things they treasured.

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One woman wrote about how her husband, who has terminal cancer, enjoyed sitting in the car by the beach, about 10km from their home. But lockdown restrictions mean Victorians are only allowed to travel 5km from their home, and only for essential reasons such as grocery shopping and medical care.

Spence said the council was hearing stories “every day” from carers distressed at not being able to advocate for their sick relatives in hospital due to limits on visits, and people with terminal illnesses were opting not to attend hospital because they wanted to be with their families at the end of their life. But this often meant palliative care at home in less-than-ideal circumstances and without the right supports in place for their families.

“I’m really worried that when we come out of Covid we will only then listen to and hear so much of this distress, and we will be overwhelmed with sadness about their experiences,” Spence said.

“You only get one chance at dying, and dying well is important.”

Kelly Rogerson is chief executive of Palliative Care South East, a free service in the south-east metropolitan region of Melbourne. Rogerson said since the pandemic began, demand had increased by 61%. Support to help people to die at home was essential, she said, but for some people, they and their carers are better supported at a palliative care hospital.

“We are getting more and more requests to have people taken out of aged care and hospital and brought home, and my team is trying to do that and to go above and beyond what we are funded for,” Rogerson said.

“But we need to consider that end of life isn’t just the acute, final hours or days. When someone has a life-limiting illness every minute counts and we have to be careful not to judge what’s important for people when there’s a limit on how long they’ve got left.

“But with all the restrictions in place there is a lot of confusion and restriction about what is appropriate.”

Usually families might gather to support people in their grief caring for a terminally ill family member, she said, or may frequently visit. This support had dropped off during the pandemic. She described how one woman just wanted to sit by her dying father’s bedside, but thought she would get into trouble for breaking the rules because he no longer needed caregiving, and she just wanted to keep him company.

In another case, a man told the Cancer Council he was caring for his terminally ill wife, along with their two teenage children. His wife began to develop significant symptoms as she reached the end of her life, with the cancer causing seizures meaning she could not be left alone. At night she required at least two-hourly repositioning and wound care.

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Her husband had to keep working while caring for and homeschooling their children and caring for his wife. While he looked at options to transfer his wife to an in-patient palliative care unit, a direct admission was not possible due to the pandemic.

She would need to stay in a Covid-19 screening ward for at least 24 hours until she was cleared of Covid, and her family would not be able to be with her or visit frequently. The family was distressed that she might die at any time and did not want to risk being unable to visit when she was so close to death.

They decided not to admit her to hospital. While a community palliative care nurse came daily, the family could not afford additional respite or general nursing. She died in August at home with her children and husband by her side, but the family is experiencing ongoing trauma, the council said.

“Anecdotally we have stories of people putting off going to hospital longer as they are fearful of being separated for family members,” Spence said.

In another case, siblings aged nine and 13 caring for their dad with Hodgkin’s lymphoma have been unable to visit him during the times he has been rushed to intensive care. At first during stage four lockdown the hospital would not allow children to visit, and now the hospital has banned all visitors. If their father receives a planned stem-cell transplant, they will not be allowed to see him for months.

Spence said hospital policies were inconsistent. There was no centralised department for people to call for an exemption to visit family. Instead people were dealing with different ward managers or security guards.

Spence said it was important to note many hospitals were going above and beyond to accommodate visitors for those in palliative care.

“But we have heard of people being turned away at the door when they visit dying relatives by security guards simply enacting visitor rules, but it causes so much distress,” Spence said.

“We all understand the need for rules but we need more compassion and empathy. Compassion must be given to every family equally, not just to those in the know or who are health literate and who have the confidence to call the nursing manager.”

• Cancer Council 13 11 20 is a free, confidential telephone information and support service run by cancer councils in each state and territory.

Do you know more? Contact melissa.davey@theguardian.com