The Toronto Globe and Mail treated readers last year to an unusually intimate look at issues that arise at end of life. Lisa Priest, lead reporter for the newspaper’s series, spent 10 weeks embedded in a critical care unit at a local hospital, where she tracked the experiences, thoughts and feelings of patients, family members, doctors and other medical staff. Here she describes some key questions that arose as she embarked upon this multimedia project, and the inspiration that she felt at being privy to some of life’s deepest, rawest moments.
By Lisa Priest
It began with a simple question: How do we die?
The issue had been top of news. Patients and doctors had gone to court in various provinces to get the answer to one question: Who decides – family or physicians – when to remove life support of a patient who can’t consent?
I sought approval to embark on a project to examine end-of-life issues; I wanted to explore them through the prism of real patients and doctors who were wrestling with this issue in real time, not those rare, polarized cases that hit the news.
Crucial to telling this story was gaining access to a hospital’s critical care unit, where the sickest patients are housed, all of them on ventilators. After multiple discussions with doctors over several weeks I was embedded in the critical care unit at Sunnybrook Health Sciences Centre in Toronto, where I spent 10 weeks.
Embedding presents immediate challenges: You want to be objective but you are reliant on medical and nursing staff for connections to patients. You want to get along well, but not become too friendly. You definitely don’t want public relations officials managing your story. Ultimately, I found it comes down to trust, discretion and common sense. Sunnybrook wanted a balanced and accurate story just as much as I did.
Though it was a long-term project – I worked on it three days a week over four months – I had to be focused from the beginning. And there were issues that needed to be worked out early:
- Patients were on ventilators and therefore couldn’t talk. How would I interview them? Some used alphabet boards to spell words; others I had to read their lips.
- Selection of patients. Do I pick someone who is choosing a certain end, given that the story was about end of life? That seemed ghoulish to me, plus I wanted things to unfold organically. So I selected four patients, all with different stories to tell.
- Bringing cameras and video into critical care. Our photographer was also embedded, starting a couple of weeks after me, when a comfort level had been established on the unit.
- This series needed to mix old journalism – a 5,728-word narrative – with new, including videos of patients and online discussions. The videos needed to be complementary to the story, not repetitive. Structuring a story with so many subjects required planning. I needed to step back; this is the kind of writing where you need to show, not tell. Simple language works best. I organized patients more as themes. And I was lucky enough to have some of the best editing of my life.
The series ran over four days, starting on Nov. 26. The narrative was published, along with four videos, on a Saturday, the day with the largest circulation. The following week, there were stories on the cost of dying, a patient who died at home, and a case that the Supreme Court of Canada is expected to hear. Another writer did a great piece on advanced directives.
Approximately 400,000 readers flocked to the series. Two critical care physicians that I followed in the unit even took the time to answer reader questions online.
The result was a series that offered readers a privileged window into a rarely seen part of the health care system. End-of-life decisions have become one of the most pressing medical and ethical issues of our time, forcing us to re-examine not merely what we can do to prolong life, but what we should do.
I expected to go to this unit to write a story about dying but this was more a story about living. One patient got married; another is working towards going home to live on a ventilator; a third rebounded and went home. A fourth patient died after having life support withdrawn my first day at the hospital.
That patient who married has since died. I saw him a few days before his death and wrote an obituary on him. I continue to follow the remaining two patients.
What did I learn? The will to live is strong. Quality of life is an individual measure. Medical technology has developed more quickly than any of us has had time to study its consequences. Not enough of us have expressed our wishes to loved ones on how much medical intervention we want at end of life.
Colleagues would ask me if I felt depressed spending so much time in a critical care unit, where one out of five patients dies. I wasn’t depressed; I was inspired. With access to patients at this delicate time in their life, this story felt raw and true.
Lisa Priest is a reporter, editorial writer and author of The Patient Navigator column for The Globe and Mail. She has covered health care for two decades and is the author of three books, including one on the lack of accountability in Canada’s health care system.
