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Harriet Maclean at her partner's bedside in the ICU ward at Sunnybrook Hospital. Rheo Eybel was diagnosed with Glioblastoma, an aggressive form of brain tumour. (Moe Doiron/(Moe Doiron/The Globe and Mail))

Harriet Maclean at her partner's bedside in the ICU ward at Sunnybrook Hospital. Rheo Eybel was diagnosed with Glioblastoma, an aggressive form of brain tumour.

(Moe Doiron/(Moe Doiron/The Globe and Mail))

Critical care: Spending 10 weeks with patients facing death Add to ...

Family from Guelph, Niagara-on-the-Lake and Calgary gathered around the bedside. Tears rolled down Ms. Pritchard’s cheeks. The tube was removed. Her son, anticipating a long night, went back to the family room to call more relatives.

She died in 10 minutes.

The next morning, there was an empty spot on the white board next to bed 40, where Ms. Pritchard’s name had been erased. Ms. Perampalamoorthy sat at her desk, in front of the empty bed, looking forlorn.

Later, she would tell Mr. Pritchard, “I’ve never seen something handled so beautifully.”

Though Ms. Pritchard’s directive was crystal clear, many others are limited: They are written too abstractly, with family members left still wondering which exact treatments would be acceptable.

“Patients usually construct them in a state of health and perspective that can be very different from the one proximate to the final stages of life,” Dr. Fowler pointed out. “It is important that such directives not be static and final, but fluid and responsive to the changing situations that patients inevitably encounter.”

A century ago, heart attacks, strokes, kidney disease, flu and pneumonia took people swiftly. Today, cancer is the No. 1 killer, followed by heart disease. Many others die of accidents, chronic respiratory diseases and what could be called frailty, with multiple chronic conditions.

Fred Franklin came to Sunnybrook with a medical emergency. There was no time to debate the finer points of quality of life in a 90-year-old man with a suspected bowel obstruction and aspiration pneumonia – a condition that meant he was breathing in his own vomit.

“We had been very clear, we wanted no heroic technology,” said his wife, Ursula Franklin. “Our wish was that the quality of life would be the determining factor.”

For Mr. Franklin, the quality of most of his life had been measured by bridging differences and furthering social justice, bringing him in contact with refugees, prisoners and other disadvantaged groups. That was what mattered to him. By the time his son, Martin, got to the hospital that day, Aug. 7, this was not the active father he had seen just weeks earlier.

“When I left the bed and went outside, I basically fell apart. It was incredibly overwhelming when you see someone that active, then see them that non-responsive,” said Martin, a Grade 4 public-school teacher.

Over the next several weeks, he kept track of his father’s progress in a book, noting the most minuscule of improvements. One entry said he now required 80 per cent oxygen instead of 100 per cent; another stated his white-blood-cell count was up, suggesting that he was fighting an infection.

“There’s so much hindsight involved. If we knew then what we know now, our decisions might be different,” Martin said later. “Doctors are there to save lives – they are not there to give you a window of opportunity on when to end it.”

The Franklins had a physician help them craft a DNR that left no room for misinterpretation: If Mr. Franklin’s heart stopped, he would not be resuscitated, though he would be provided relief.

“I would think, given the choice, the family will prefer him to die with dignity,” Martin said, “rather than to be kept alive by machines and end up bedridden.”

Yet in a somewhat surprising turn of events, Mr. Franklin made a significant recovery in recent weeks. Today, he is at a rehabilitation hospital and expected to be discharged home in early December. He has been given a reprieve, at least for now.

“I can see that he’s happy,” Martin said. “He needs to work to live. It will be a success if he is able to be somewhat functional – if not, it will be a wasted life. I don’t think a life where you are sustained by machines is good for anyone, not the patient and not the family.”

Intensive care takes a long-term toll Quality of life is a personal measure. It is a moving target that changes with time and circumstance. Brian Cuthbertson, chief of critical care at Sunnybrook, studied 300 patients who had been admitted to a hospital critical unit in Britain, and discovered that compared with others their age, even five years later they had higher death rates, remained notably weaker and had more trouble carrying out daily-life activities.

And yet they weren’t very old (the median age was 60.5 years) and hadn’t stayed very long (the median was 6.7 days). What Dr. Cuthbertson concluded, in a paper published in the journal Critical Care last year, was that a stay in an intensive-care unit should be treated as a lifetime diagnosis, requiring ongoing health-care support.

“The mistake some people make is [to think]that there is no human cost of going to intensive care and having all these treatments,” he said.“When we’re talking about whether someone is going to get better, it’s not just about will they survive to leave an intensive-care unit, to leave the hospital, but will they have a quality of life that they want and will accept.”

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