Jun 21, 2021, By: Laura Eggertson
Leading difficult conversations about children’s end-of-life wishes is a regular part of Francis Macapagal’s job.
For the last 16 years, the clinical nurse specialist has worked at Toronto’s Hospital for Sick Children, where he’s been a member of the pediatric advanced care team for nine years.
He asks children and their families what their goals of care are, and how his team can make every day a good day, for as long as possible.
Then Macapagal and his teammates make the good days happen. For one 10-year-old, that was a French bulldog puppy, courtesy of the Make-A-Wish Canada. For another, it was a once-in-a-lifetime steak and seafood meal cooked by a celebrity chef.
But when Macapagal contracted COVID-19 during the pandemic’s first wave, he wasn’t prepared to have that conversation himself.
It was March 31, 2020, the day after Macapagal’s admission to Toronto Western Hospital. Nine days earlier, he’d tested positive for COVID-19 after returning from a two-week teaching assignment at a hospital in Trinidad.
Initially, Macapagal — who didn’t even own a thermometer — isolated alone in his 500-square-foot condominium. He had chills, aches and hallucinations. He thought he was running a fever. After a Toronto Public Health caseworker sent him a thermometer, Macapagal realized his fever had spiked to 40 ℃.
“I couldn’t believe that at 39, I was needing to answer questions around CPR status and whether I would want to be intubated.”
As his chest tightened, Macapagal drove himself to hospital. He nearly collapsed as he staggered to the emergency department.
He was admitted immediately. Doctors prescribed fluids and antibiotics.
At first, the veteran nurse wasn’t worried. His care team “didn’t appear overly concerned,” he remembers.
Then Macapagal’s oxygen saturation levels dropped.
He’d been monitoring them himself. He knew they should be 90 or above; his were in the 80s. Struggling to breathe, he pressed his call button.
A nurse responded. She began administering oxygen: one litre, two litres, three litres. As she held Macapagal’s hand, the nurse asked a colleague to call the critical care assessment team.
When the nurse got to five litres of oxygen, Macapagal’s saturation levels finally rose. He felt relieved — until the resident on his floor arrived.
Once COVID patients start to need oxygen, the doctor told Macapagal, they often deteriorate quickly.
“He said, ‘I just need to confirm with you: if you needed to go to the ICU and if you needed a breathing tube put in, is that what you would want?,’” Macapagal recalls.
He hadn’t even told his family he was in hospital. His father had lung cancer, and his condition was worsening.
Macapagal didn’t want his parents, brothers and sister to endure another health crisis.
“Save my life”
“It was the most scared, most alone I’ve ever felt in my life,” he remembers. “I couldn’t believe that at 39, I was needing to answer questions around CPR status and whether I would want to be intubated.”
Macapagal didn’t want to die.
He told the doctor to “do whatever you need to save my life.” That included intubation.
Fortunately, Macapagal did not need to go on a ventilator. He began feeling better and weaned himself off oxygen by the end of that day, gradually reducing the flow and shouting his levels out to his nurse.
After six days in hospital, he went home. The nurses on his floor stood and clapped for him as he left — a gesture that still brings him to tears.
Macapagal’s recovery has been slow. He moved in with his parents as he dealt with lingering fatigue, weakness and “brain fog.” At the same time, Macapagal helped care for his father, Francisco, until he died in July 2020.
It took nearly a year for Macapagal to feel as healthy and strong as before his illness.
He’s acutely conscious of how differently his story could have ended. He’s sharing it to encourage other health-care workers to get vaccinated, as he has been.
As of February, at least 24 health-care workers have died from COVID-19 in Canada since the pandemic’s start, according to the Canadian Institute for Health Information.
“I just accept that somebody was looking out for me, and I got better,” Macapagal says.
Experiencing both COVID and his father’s death made Macapagal question his career choices.
“It’s definitely been a year of readjustment,” he says.
Before COVID, he balanced the sadness of working in palliative care with a happy, healthy personal life.
He lifted weights and worked out three or four times a week at a gym. He spent time with his niece and nephew, had weekly family dinners at his parents’ home, cycled and socialized.
After COVID, he couldn’t take care of himself the same way.
Instead of escaping painful personal memories by throwing himself into work, work triggered traumatic memories.
Patients whose lung cancer had metastasized reminded him of his father’s last months.
When a patient’s oxygen levels dropped, Macapagal had to take deep breaths, reminding himself that he could.
Sometimes he needed to excuse himself from those difficult end-of-life conversations.
“For the first time … I’ve really questioned why I’m working in palliative care when there are so many sad things going on in my personal life,” Macapagal says.
With the help of a therapist, Macapagal learned how to care for himself in the new COVID universe.
He bought weights and adjusted to working out at home with an online personal trainer. He visited with his niece and nephew via FaceTime or on drive-by visits.
With warmer weather, he cycles to work and goes on 50-kilometre rides on the weekends.
As hard as they were, Macapagal’s experiences improved his nursing practice, he says.
“2020 was the year of horrible things, but I’m a better person and I’m a better nurse because of it.”
Being a patient has made him appreciate his own patients’ vulnerability in a new way. And caring for his father at home means he knows what practical considerations to ask families about.
“I’m asking questions I might not have asked before this happened,” he says.
Now he lets patients know they might have to wait for hours for a nurse or doctor to arrive to issue a death pronouncement. He can tell them what it’s like to see their loved one leave for the last time, in a hearse.
As hard as those conversations are, Macapagal is grateful to share them. He draws his inspiration, and his ability to keep going in palliative care, from the children he works with.
“Being able to grant those wishes — to share stories with kids and families — it’s the reason I do what I do,” Macapagal says.
Across the tops of his thighs, he’s tattooed two words to help him keep doing his job.
Laura Eggertson is a freelance journalist based in Wolfville, N.S.