Rachel Newman had just spent 10 days on a mechanical ventilator in a medically induced coma, then four days alone, scared and disoriented in a hospital ward room.

Countless studies suggest the experience could set her up for prolonged emotional distress and a steep physical recovery.

But when the COVID-19 patient was finally discharged from a Toronto hospital this month, she was delivered to the exit on a cold April night in just a hospital gown, with virtually no instructions on what to do next.

It is distressing to hear when patients and families experience any kind of gap in care

Newman’s husband, Zale, struggled to look after a wife whose stomach had shrunk and psyche had taken a beating, with health-care professionals refusing to see her in person. He had tested positive for COVID-19, too, and the couple seemed “toxic” to the medical system, Zale says. An overseas relative who had been a nurse finally gave some much-needed guidance.

“After somebody goes through something like this, there should be someone who looks after your needs,” Rachel Newman, 61, said.

Her experiences underline both the harsh after-effects of long stays in the intensive-care unit, and the impact of a pandemic on getting the required follow-up help.

Rachel stresses that she received “magnificent” medical treatment at North York General Hospital, especially in the ICU, and is well aware those health-care workers have a tough, dangerous job.

But as increasing numbers of Canadians emerge from such ordeals, the system has to do better at looking after those who survive critical bouts of COVID-19, the Newmans argue.

Zale, owner of a financial services company, is a volunteer rabbi and visits the ICU at another Toronto hospital every weekend. Rachel is a social worker in children’s mental health.

“Most people are not connected like we are,” she said. “I think a lot of people come home, maybe to nobody, maybe to an old aunt who is not resourceful, who doesn’t have this information and it’s the blind leading the blind.”

Nadia Daniell-Colarossi, a North York General spokeswoman, said she cannot comment on individual patients.

But “it is distressing to hear when patients and families experience any kind of gap in care and it is important for us to know when we have not met their needs,” she said. “We of course want to have open and direct conversation with our patients and their families so we can understand and address their concerns.”

Dr. Brian Cuthbertson, critical care head at Toronto’s Sunnybrook Health Sciences Centre, said he has no knowledge of the Newmans’ situation, but suggested lack of aid for patients after they leave the ICU is not unusual.

“There’s a bit of a gap here, and the systems are not yet in place to give the sort of support these patients need,” he said.

And the “harsh reality” is that that gap has widened with the system being under pandemic lockdown, Cuthbertson said.

The Newmans’ encounter with the coronavirus began March 19, when Zale felt chills one day, and more or less fine the next. Then Rachel developed a high fever and nausea. She also had a dry, hacking cough, but that had been around for most of the winter. Acutely aware of the unfolding pandemic, they got tested for the new coronavirus. A day later, the results for both came back positive.

Rachel did not improve and a week later, on March 29, Zale took her to the hospital. By 1 a.m. the next morning, he learned that his wife had consented to being put into an induced coma – given a combination of sedatives and paralytic drugs – so staff could insert a breathing tube down her throat and attach her to a ventilator.

“That was the last time I saw my wife for two weeks,” he said.

Rachel says she recalls being asked for her consent to go on the ventilator, then has “zero” recollection of the next several days.

A week and half after the intubation, she was able to breathe on her own again. As she woke up dazed from the sedatives, staff asked if she knew the date. “Late 2019,” Newman responded.

The systems are not yet in place to give the sort of support these patients need

Conscious now, and transferred to a regular ward that seemed to have few patients or staff, Rachel says the next three or four days were also difficult.

“It was a very, very strange, surreal hospital experience,” she said. “I didn’t know if it was day, I didn’t know if it was night … You could feel completely alone.”

No one explained, Newman says, that she could be contagious and had to stay put.

“Sometimes I would just walk out of my room and say ‘Is there a nurse here?’ … Then I’d hear someone yell ‘Get back into your room now, you’re not to leave your room,’ ” said Newman. “It felt incredibly punitive.”

To make matters worse, Zale slipped and fell on some concrete steps at their house, opening a nasty cut. Back at the North York General emergency department, a doctor stitched up the laceration. The staff, knowing he had tested positive for COVID-19, gave him a pair of scissors and tweezers. He was told to remove the sutures himself so he didn’t have to return.

On April 11, Zale learned that his wife was ready to be picked up, immediately.

Research has shown that patients spending days in an ICU, especially if placed on a ventilator, often suffer from what’s called intensive-care syndrome, symptoms that can include muscle weakness, cognitive deficiencies and depression or post-traumatic stress. The Newmans say they were told none of that.

I definitely feel anxious, more anxious. It’s very lonely, isolating

Rachel was wearing a “flimsy gown” on a “freezing” night when delivered to a hospital entrance by wheelchair, Zale recalls. The hospital staff member handed over a discharge notice that listed her diagnosis, the doctors who had treated the woman, her most recent lab results and medications she’d been given.

There were also six lines of instructions on what to do next: isolate until at least 14 days after onset of symptoms and contact her family doctor to follow up on the hospital stay and her “mental health.” Because she had hypertension while in hospital, they should also monitor her blood pressure, the note said. It did not specify how they were to do that.

But there were more immediate problems. Rachel could hardly eat without feeling nauseated and could barely move. She was clearly suffering psychologically, too, at one point even expressing survivor’s guilt, says her husband.

“I definitely feel anxious, more anxious,” says Rachel. “It’s very lonely, isolating.”

As per provincial guidelines issued to physicians not involved directly in the COVID-19 campaign, neither her family physician nor any other doctor would see her in person. Nor would a physiotherapist. Worried about Rachel’s blood pressure, Zale had to call paramedics on Monday to measure her vital signs.

Finally, Zale’s sister, Judith Berger, a retired head nurse at an Israeli hospital, sent instructions noting that Rachel’s stomach would have constricted during the 10 days of feed tubing. She should eat small amounts several times a day, and exercise for only a few minutes at a time.

Rachel wonders why it took someone on another continent to provide some of the most practical advice she’s received since leaving hospital.

“I think it’s a simple thing that when you leave a hospital with an illness that’s really rampant today, there has to be some material you just hand the person,” she said. “ ‘Know that this is what to expect, and this is what you work with.’ I had none of that, none of that.”

• Email: tblackwell@postmedia.com | Twitter: tomblackwellNP

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