Patients choosing death over ventilator

Hard decision in nursing home outbreak

It is the worst-case scenario of the COVID-19 pandemic: so many seriously ill patients that doctors have to decide who gets access to a limited number of intensive-care beds and ventilators.

And who is deprived of the potentially life-saving treatment.

But as the number of Canadians made critically ill by the virus ticks up, some patients or their families are actually foregoing entirely the often-harrowing treatment afforded by ICUs and breathing machines.

A number of elderly patients have died in long-term care homes rather than submit to intensive therapy that might have only made their passing more painful and uncomfortable.

Physicians, meanwhile, are urging Canadians to consider now whether they would want the full panoply of ICU care should COVID-19 make them severely ill, especially given research showing survivors of such treatment often fare poorly over the long term.

“If someone felt like they were approaching the end of their life, dying on a ventilator with a viral pneumonia would be an undignified way to go,” said Dr. Michael Detsky, a critical care specialist at Toronto’s Mt. Sinai hospital. “I would be very supportive if somebody told me they didn’t want mechanical ventilation should they deteriorate.”

Some doctors are even considering whether to raise a more touchy issue, asking patients or families to consider giving up their chance at a ventilator for someone more likely to survive.

For now, Canada’s ICUs have ample space, especially after the cancellation of elective surgeries at most hospitals, and more ventilators are on order. But there are fears that a surge in coronavirus cases like that in Italy or New York — which is by no means a foregone conclusion in Canada — could swamp the system and even lead to rationing of care.

Guidelines developed recently by the University of Toronto’s critical-care medicine department urge health-care workers to ask COVID-19 patients soon after they’re admitted what goals they have for treatment, given the potential for “rapid deterioration” once laboured breathing and low oxygen levels set in.

Such conversations could have benefits for more than just the patients, say the guidelines.

“Early establishment of goals of care may also reduce unnecessary utilization of limited critical care,” they say.

Statistics on the proportion of Canada’s 130 or so COVID-19 deaths that have occurred outside of hospital or the ICU are hard to come by.

But one of the largest outbreaks of the disease in the country — resulting in 16 deaths so far — offers some indication of what’s happening.

When the first cases of the coronavirus emerged at Pinecrest Nursing Home in Bobcaygeon, Ont., last month, its medical director, Dr. Michelle Snarr, emailed families to warn they may have to decide whether to send their loved ones to hospital. That would involve going on a ventilator, she said, and a frail nursing-home resident would likely “suffer a great deal” and might not survive the ordeal.

Snarr could not be reached for comment, but it appears none went the ICU route.

“Under normal times, we would send people to the hospital if that was the family’s wishes, but we knew that was not going to be possible knowing that so many people were going to all get sick at once and also knowing the only way to save a life from COVID is with a ventilator and to put a frail, elderly person on a ventilator, that’s cruel,” she told CTV News.

In Quebec, Micheline Sauriol’s mother died from COVID-19 at a seniors’ home in LaSalle after briefly being taken to Montreal’s Jewish General Hospital and then returned, according to CBC.

Ventilators help people breathe when their lungs cease to function properly and can save lives. But they also have clear negative side effects.

With a tube down their throat and often under sedation, they cannot communicate, while the process of inserting the tube and suctioning airways is uncomfortable and painful. Patients are also unable to take care of their own bodily functions or cleaning. Some say they would let staff know when they’ve had enough, but are shocked to learn they’d have no way to indicate that, said Dr. Gordon Rubenfeld of Toronto’s Sunnybrook Health Sciences Centre.

“It’s a bit like being in a twilight or in a dream,” he said. “It’s not like you’re awake and alert and writing notes to loved ones … This inability to communicate is one thing that people don’t know and seems to play an important role in their decisions.”

And the research, a lot of it carried out by Canada’s critical-care doctors, indicates that those who make it out of the ICU and a long stint on a ventilator face an unsure future.

Experts call the possible negative effects “post intensive-care syndrome” — a combination of cognitive decline, psychiatric problems like depression and post-traumatic stress and muscular-skeletal weakness.

A striking 2017 paper by Detsky and colleagues looked at about 300 patients in Pennsylvania who had spent at least three days in the ICU and more than 48 hours on ventilation or being infused with a drug for dangerously low blood pressure.

With a median age of 62, half were dead within six months, and just a third were back to their previous health levels, the researchers found.

Informing patients of the risks and benefits of ICU treatment is standard. But if hospitals become overrun with COVID-19 patients, Rubenfeld wonders if doctors should bring altruism into the picture — tell patients who are unlikely to fare well that not going on a ventilator could free up one for someone more likely to benefit.

“I really do believe that a lot of people are altruistic and a lot of people, particularly Canadians, have a really strong sense of community and social justice,” he said. “It may well be the most ethical and humane way to present this to families.”