Ex-patients ‘completely alone’
WOMAN SENT OUT INTO COLD AFTER 10 DAYS ON VENTILATOR
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.
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 followup help.
Rachel stresses that she received “magnificent” medical treatment at North York General Hospital.
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 is a volunteer rabbi and visits the ICU at a 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.
“We of course want to have open and direct conversation with our patients and their families so we can understand and address their concerns,” she said.
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 then Rachel developed a high fever and nausea. They got tested for the new coronavirus, and a day later, both came back positive.
Rachel did not improve and a week later, on March 29, Zale took her to the hospital. The next morning, he learned that his wife had consented to being put into an induced coma 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.
“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 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.
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 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.
Rachel was wearing a “flimsy gown” when delivered to a hospital entrance, Zale recalls. The hospital staffer handed over a discharge notice that included lab results, medications and instructions to 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.”
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. Rachel wonders why it took someone on another continent to provide some of the most practical advice she’s received since leaving hospital.