Sidelined patients reject being 'collateral damage' because of COVID-19
People waiting for surgery say advocating for care may make a difference
Sydney Loney is pinning a lot of hope on a sticky note.
The Toronto-area journalist and mom of two is one of thousands of Canadians whose surgeries and other elective medical procedures have been put on hold because of COVID-19.
After a routine mammogram last November, Loney found out she has breast cancer. Her mastectomy and breast reconstruction were scheduled for last month, but on March 18, she learned that her surgery is postponed indefinitely. Even an ultrasound to see how much the cancer has grown is on hold for now.
Keenly aware of the complexities facing the health-care system right now, Loney gave it a few weeks, and then made a call.
"I was told that things change every day and that they don't know what's happening but that I'm on a list," she said in an interview with White Coat, Black Art host Dr. Brian Goldman. "I was also told that my name was on a sticky note, so that felt promising."
She says learning of the sticky note "shows just the craziness of this whole situation and just how utterly unprecedented it is."
"Everyone is just still scrambling to figure it out."
Canada's provinces and territories began postponing elective medical and surgical procedures — hip and knee replacements, cataract removals and even cancer treatments, including surgery and radiation — just days after the World Health Organization declared COVID-19 a pandemic on March 11.
The idea was to make room for the expected surge of COVID-19 patients who would need ventilators and intensive care, as well as to reduce the likelihood vulnerable surgical patients contract the virus themselves.
As many as 100,000 Canadians could have surgeries delayed because of the pandemic, and as Loney has discovered, it comes with a cost.
Initially she was able to reassure her children — ages 10 and 13 — that the surgery would put most of her cancer ordeal behind them by the end of March. The postponement put the whole family — including her worried parents — "right back to where we were on day one."
"It's just been a very long month of not knowing what's going to happen."
Ethical framework for surgical triage
Surgical oncologist Fayez Quereshy, interim vice-president of Toronto General Hospital — part of the University Health Network — is one of the hospital administrators tasked with helping to determine which surgeries will proceed during the pandemic and which will be delayed.
"We've asked providers of care to list out all of the cases that they have in queue, and to work in a team to identify which of those patients require urgent care," said Quereshy in an interview with Goldman. "And the definition we've applied is those cases need to be done within 14 days or there'll be irreparable harm, or God forbid, death, or life- or limb-threatening challenges to those patients."
A diverse panel of representatives from every part of the hospital network — including colleagues who specialize in medical ethics — looked at various best- and worst-case scenario models for the number of COVID-19 patients the hospitals could see. From there they landed on the 14-day timeline.
Patients who qualify as urgent have a range of issues and include some oncology, cardiac, transplant and neurosurgical patients, among others.
Quereshy said people should be reassured that medical teams are closely monitoring the patients on their roster for changes in their condition.
"I'll just speak anecdotally from my own practice as a surgical oncologist who manages patients with colon and gastrointestinal malignancies. Several of those patients have been delayed or deferred — not forgotten — and we call them on a weekly basis, sometimes twice weekly, to make sure that we're carefully monitoring their symptoms, but also, quite honestly, their mental health and psychological well-being."
After the restrictions are lifted, Quereshy said UHN hospitals will use the same team-based triage approach adopted during the crisis to tackle the backlog of surgical procedures and determine the order in which patients are scheduled.
Being a 'squeaky wheel'
But some patient experiences suggest that advocating persistently for care — being a "squeaky wheel," so to speak — makes a difference at any time, including during this pandemic.
Robin McGee, a 58-year-old clinical psychologist from Port Williams, N.S., is losing her eyesight — and fast — due to a rapidly escalating form of cataracts that developed alongside complications from previous treatment for cancer.
She loses the equivalent of "two or three letters on an eye chart every three weeks," and without the surgery would be too blind to drive in six months and completely blind in a year.
McGee is also dealing with a recent recurrence of Stage 4 colorectal cancer, for which she'll restart chemotherapy in the coming weeks and months. But that's not been her most pressing problem lately.
She only has a short window of time to have the sight-saving surgery before her chemo restarts — treatment that could soon be palliative, given her prognosis. Many routine medical procedures, even dental work, are ill-advised during chemo.
Only after a letter-writing campaign by herself and others, calling attention to the problem on Twitter and Facebook, and speaking with the media did McGee get permission late Wednesday to have her eye surgery performed in a private clinic by an ophthalmologist who read about her situation and came forward.
Good news at last! Dr Brendan Carr CEO <a href="https://twitter.com/nshealth?ref_src=twsrc%5Etfw">@NSHealth</a> will allow me to pursue private cataract surgery via <a href="https://twitter.com/HalifaxEyeInst?ref_src=twsrc%5Etfw">@HalifaxEyeInst</a> ! I can save my eyesight before chemotherapy starts! Gratitude to all who have advocated on my behalf. <a href="https://twitter.com/hashtag/NovaScotiaStrong?src=hash&ref_src=twsrc%5Etfw">#NovaScotiaStrong</a> - NS needed this better story.—@TCOrobin
"I'm gonna have my vision saved. So that's a huge relief to me…." she told Goldman. "It's hard to kind of get words around it. I'm feeling almost woozy with relief. I didn't maybe appreciate how much of a terror burden it was until it was lifted."
After doggedly getting her request for an exception in front of senior health authorities, McGee received an email Wednesday evening from Brendan Carr, CEO of the Nova Scotia Health Authority.
In the email, shared with CBC Radio, Carr confirms "there is nothing in the Public Health order that would prevent a private surgical clinic from performing this procedure if it is deemed to be essential on a clinical basis."
McGee's been down the patient advocacy road before. She's the author of The Cancer Olympics, a book about medical error based on her own experience with delayed cancer diagnosis 10 years ago.
She'll have to pay for her cataract surgery out of pocket using funds she has set aside from a successful medical malpractice suit for the "inevitable end-of-life care that I'll require."
But she says she is deeply concerned that most people don't have those funds available, and encourages others who are waiting for treatment "to be a squeaky wheel and to get that grease."
"As the pandemic continues, provinces and patients and health-care providers … need to solve this problem about what to do with urgent patients, patients whose care can't wait."
In Toronto, Sydney Loney says she's just looking for transparency about how things will proceed once bans are lifted.
"I've heard patients like myself referred to as collateral damage, and that doesn't really sit well with me. You know, I understand just the enormity of the situation. And I just don't think that … the response should be to the exclusion of all other patients."
Loney says it was reasonable to wait a few weeks at the beginning of the COVID-19 crisis. "But I think now we've come to a point where you do need to advocate for yourself, and you do need to start pushing back a little bit and trying to get some answers."
Written by Brandie Weikle. Produced by Arianne Robinson, Jean Kim, Sujata Berry, Dawna Dingwall and Jeff Goodes.