Vicki Kap's family thought she had a cold but less than two days after arriving in hospital she was placed on a ventilator and died of COVID-19.
Her daughter, Jody Brouwer, said Kap, 75, started having trouble breathing before being taken by ambulance to a hospital in Sarnia, Ont., where she would spend a week before dying in the intensive care unit.
"Mom didn't wish to be on a ventilator for more than four days if she wasn't making any progress," Brouwer said, adding her parents had end-of-life conversations because her father has stage-four bowel cancer and was presumed to have the virus.
"We were told with my mom that she'll be on a breathing apparatus for the rest of her life, she'll never be able to go home, she'll be going to a nursing home if they kept her on a ventilator for months."
Kap's heart was going into distress before she died on March 29, three days after she would have celebrated her 54th wedding anniversary with her husband Frank, Brouwer said. She was her husband's sole caregiver at their home while he waited to go into hospice.
She believes her parents contracted the virus after having coffee with friends who had returned from Portugal in early March. The friends were asymptomatic then, but later became sick themselves.
Brouwer's uncle and his wife from nearby Strathroy had travelled with the couple and also became sick, one of eight people in their circle of family and friends who contracted the virus, Brouwer said.
Her uncle, Martin Postma, died two days before her mother and had also been on a ventilator, his wife said.
Mieke Postma said her family decided to take her husband off the ventilator after nine days because they feared his quality of life would be poor if he survived.
"He didn't really show much improvement over that time. If anything, it got worse with his kidneys completely failing," Postma said, adding her husband's heart was also affected.
Kap had minor chronic obstructive pulmonary disease but was otherwise in good health, said Brouwer, who has questions about what's being learned about the use of ventilators.
Doctors around the world have little data from limited studies. Much of the research includes patients still on the breathing machines, with no information on long-term outcomes for those who may survive.
Kap ended up in hospital after her nephew, Jeff Cain, spoke with her by phone and realized her breathing was laboured.
Cain, who is a former respiratory therapist, said he dropped off a small device called a pulse oximeter outside Kap's home so she could place it on her finger to measure the level of oxygen saturation in her blood and go to hospital if the level was too low.
Cain said both of his parents were also diagnosed with COVID-19 and are recovering well.
"I know a gentleman in the same community who came off the ventilator this week," he said.
"My mom asked, 'Is this automatically a death sentence?' I said, 'No, it depends on what else is going on.' "
Thomas Piraino, a respiratory therapist in the intensive care unit at St. Michael's Hospital in Toronto, said patients are placed on ventilators after developing a lung injury called acute respiratory distress syndrome.
Those with a condition like chronic obstructive pulmonary disease, as in Kap's case, have reduced air flow to the lungs and could be provided with non-invasive oxygen therapy depending on the severity of infection from COVID-19 by the time they get to hospital, said Piraino, who oversees the integration of clinical research and the practice of mechanical ventilation at St. Michael's.
"They could be at an early stage where when you put the tube in, the lungs are very compliant, like a balloon that can inflate very nicely. Or they could be at a stage where they have much more stiff lungs and it's more challenging to ventilate them," he said.
By then, the lungs may be akin to a sponge that has hardened, impeding oxygen from flowing to air sacs called alveoli and making it impossible to breathe, Piraino said. A medical coma is induced at that point before a tube is inserted into a patient's windpipe so a ventilator can deliver oxygen and take over breathing.
"In terms of why (the virus) gets to that point it's a number of components and we're still trying to learn about it because it has only been around for a few months."
Small studies from around the world are showing mixed results about survival rates for COVID-19 patients. They include limited data and involve patients who are still on the machines so it's not known if they will survive or what their long-term outcome or quality of life will be if they start breathing on their own.
For example, a study published recently in the Journal of the American Medical Association of 1,591 patients across hospitals in Lombardy, Italy, showed 68 per cent were placed on a ventilator and 26 per cent of them died.
It said 58 per cent of the patients remained on a ventilator when the nearly five-week study was completed on March 25.
"Every single study that's getting published right now is in the midst of it all so it's helpful to see where people are at but it doesn't really give us an overall view," Piraino said, adding concerns range from whether patients should have been ventilated earlier or if intubation happened too soon.
"Most people that go on a ventilator come off a ventilator. With COVID we just don't know."
Mortality rates from studies so far are between 26 per cent and 70 per cent, he said.
Dr. Michael Curry, an emergency room doctor at Delta Hospital in the Vancouver area, said he has seen studies citing mortality rates as high as 80 per cent, depending on the data being used.
"Ventilators can be life-saving for some people that are going to die without a ventilator," he said. "A ventilator can buy them time for the body to fight off infection and they can do well after the ventilator is discontinued. But for a big chunk of people put on a ventilator they're not ever going to come off it, at least not alive."
Curry said Canada has about seven or eight ventilators per 100,000 people and there is no shortage of the breathing machines, which require high staffing levels of doctors, nurses and respiratory therapists.
"What's going to happen in the future we don't know. But we have seen from countries like Spain and Italy that there could be a dramatic demand for ventilators if we don't get a handle on this disease soon," he said.
The federal government has announced plans to order 30,000 ventilators.
This report by The Canadian Press was first published April 15, 2020
Camille Bains, The Canadian Press