I’ve got cancer. Will I get the care I need during a pandemic?
Breast cancer wasn’t on my 2020 bingo card but here we are.
I’ve just finished a course of chemo and now it’s time for surgery. I get more nervous each day as I wait for my surgery to be scheduled by the Toronto hospital in charge of my care. Like other cancer patients I know, my concerns are intertwined with pandemic fears. Not only are we concerned about catching COVID-19 but also about whether we will be able to get access to the life-saving cancer care we need, on time.
These fears reflect this pandemic’s history in Ontario. Breast cancer surgeries were down by 23 per cent from mid-March to mid-May and all cancer surgeries were down by 33 per cent. At that time, Stuart Edmonds, Executive Vice President of Mission for the Canadian Cancer Society, said: “The Canadian Cancer Society is concerned about the numbers of patients who are waiting to hear about a new date for their surgeries while hoping that their cancer hasn’t spread.”
Things have been worse in the United States, where nearly 80 per cent of people in treatment for cancer have experienced delays in care. Additionally, in the U.S., tests to screen for cervical, breast and colon cancer fell by 85 per cent or more after the first COVID-19 cases were diagnosed, based on data from 23 states.
We are doing better but how much better? To answer this, we need to look at the type of cancer triage plans Ontario healthcare institutions have for the pandemic.
Triage in Ontario
Triage is the assignment of “degrees of urgency” to wounds or illnesses: it often refers to the decisions about who to treat first to save as many lives as possible. In this pandemic, it isn’t just COVID-19 patients who may be triaged. It’s also patients with life-threatening conditions such as cancer and people with serious chronic health conditions like asthma.
Triage protocols for cancer patients are developed by each hospital/clinic with guidance or mandates from regional authorities, the provincial government, professional associations and the federal government.
While Ontario’s COVID-related Directive #2 for healthcare providers was amended on May 26 and reissued to deal with some aspects of services, the province left it up to each clinic or hospital to decide how much care it could provide to cancer patients based on their PPE stocks, staff capacity, space availability and other factors.
To address potential inequities and provide more consistent care, the Canadian Association of General Surgeons (CAGS) has recommended that provinces and regions use a uniform prioritization tool to help with triaging cancer surgeries. CAGS designates cancer patients as “essential” and among the last group whose surgeries should be delayed. It recommends that in a scenario in which a hospital is overwhelmed, surgery patients be sent to another hospital that has capacity rather than delaying treatments.
However, the CAGS tool has not been adopted by the Ontario Health Ministry – and this lack of consistency is concerning to many.
“If we can catch cancer early, the survival rates are much higher,” Edmonds tells me, “(but) we’ve heard from many patients that they’re worried that they’re not getting their treatments, that their treatments paths have changed, their tests have been delayed and (that) they’re almost becoming collateral damage of COVID-19.
“We understand that COVID has almost consumed the whole of the health system but even during this difficult time, cancer doesn’t stop being life-changing and life-threatening.”
Lack of consistency leads to inequities in care
The lack of a consistent cancer triage tool translates into inconsistencies and inequity in care. While Edmonds notes that “there are efforts across the country to ramp up (cancer) screenings,” in the early days many people missed scans and diagnostic screenings (which has now led to backlogs). Overall, mammograms done as part of the Ontario Breast Cancer Screening Program were down 49 per cent in March, falling to 30,877 tests from 60,435 for the same month in 2019. Diagnostic Pap tests done as part of the Ontario Cervical Screening Program fell by 48 per cent year over year, with 45,847 this March compared to 87,877 in March 2019. Although the province committed to clearing the backlog of screenings, we are now into a second wave and it is uncertain whether screenings will again be postponed.
There have been similar inconsistencies for surgery dates. As a report by Health Quality Ontario noted, some patients are waiting six days for their surgery and others may have to wait 45. Even the types of surgery patients are getting could be based on the capacity of the hospital. For example, a double mastectomy requires more staff and resources than lumpectomies: will a retrospective of 2020 reveal fewer double mastectomies and potential risks including need for a second surgery or cancer recurrence?
CASGS released guidelines in April outlining the risks of delaying cancer surgeries. “Modeling indicates that delays in high-risk cancer surgeries beyond six weeks could affect long-term outcomes for thousands of Canadians. Consequently, it is possible that postponing cancer surgery, if done without consideration of its implications, could cost more lives than can be saved by diverting all surgical resources to COVID-19.”
In the U.S. (which has more data available), delays in cancer screenings and treatment during the first six months of the pandemic are projected to lead to more than 10,000 additional deaths from breast and colorectal cancer over the next decade.
When we hear that the province makes a distinction between “essential” and “elective” surgeries, we might only think in terms of things like heart surgery versus knee surgery. But in the case of cancer, it’s different. Essential surgeries are immediately lifesaving but elective surgeries are often lifesaving in the long run even though not acutely needed. An example would be someone with a strong genetic predisposition to ovarian cancer getting their ovaries removed to prevent getting this aggressive form of cancer.
On July 13, CBC reported that the “(Ontario) Ministry of Health said there is no timeline for when (elective) procedures will resume and that it is up to regional medical officials to decide when elective surgeries will start being performed.” This statement is anxiety-provoking for anyone who has a type of cancer (or a genetic cancer risk) where surgery is in an elective or prophylactic/preventative category.
Best practices and universal guidelines
Ontario’s healthcare institutions are challenged to maximize care during times of low infection and to find ways to treat cancer patients during times with higher COVID-19 infection rates (like now).
Capacity varies by institution. Some hospitals were more prepared than others for the pandemic; for example, the University Health Network (UHN) in Ontario already had a system in place that gave it greater capacity in emergency situations like a pandemic.
Known as “surgical smoothing,” it was rolled out in 2016 to improve its ability to manage resources and eliminate waste. For each tier, UHN has a correlated number of capacity-related resources. This has created greater flexibility for planning with less impact on hospital capacity.
There are also best practices in patient education and communications, perhaps overlooked by many institutions as they’ve focused on practical issues such as safety protocols and obtaining PPE. When I began my chemotherapy treatments, the hospital did not provide me with information about staying safe from COVID-19 outside of the clinic. No one asked me what mode of transit I took to the hospital (in an area where most use TTC), nor what steps my family would be taking to avoid bringing COVID-19 home. I worried that I could carry the virus into the chemo ward due to my activities outside of it. After asking at the hospital and being told they didn’t have resources on this, I found good information from the U.S. Centres for Disease Control (but why did I have to rely on America for this?)
‘Perceived risk’ and patient decision-making
Patients decide to seek care depending on their own health status as well as anxieties about hospital safety during the pandemic. If patients perceive that there is a high risk of catching COVID-19 from the hospital, they’re less likely to seek care and this can lead to higher rates of “secondary death” from non-COVID related diseases. In July, the Washington Post reported that U.S. federal data indicated that “fear of seeking care in hospitals overwhelmed by the pandemic may have caused thousands of deaths,” with more people dying from heart attacks, strokes, hyperglycemia and other health difficulties.
Some in my cancer support group postponed procedures at the start of the pandemic with the thought that it would end soon. Now, those same patients are faced with a new understanding: this pandemic is going to be with us for a long time. They can’t safely put off care any longer.
The elephant(s) in the room
Our healthcare system was already strained before the pandemic. Previously in Ontario, there was often a wait of several hours to speak to a nurse on our province’s telehealth phone line.
That was already too long. But when I called recently, I was told the wait was 18 hours for a nurse to call back. Patients with non-emergency issues will be visiting the emergency room as a result of these delays. Add to that the fact that most after-hours walk-in clinics in the Greater Toronto Area are now only available for telehealth due to their own capacity limits.
All of this adds pressure to the capacity of hospitals.
It all points back to the elephant in the room: a system that was already underfunded now trying to cope with an increased patient load amid a greater need for PPE and rigid safety protocols. And now, of course, another elephant has come thundering into the room: our province’s once flattened curve is no more. Many secondary illnesses and deaths could be prevented if our government leadership begins to do a better job of following best practices. Patients, advocates and providers would be a stronger force if we could truly unite as an interest group around this.
My hope is that both the province and health providers will become proactive and begin to involve cancer patients in developing COVID-related communication and policy.
“We need to do a better job of involving patients in developing these policies that affect patients,” agrees Edmonds. “When making decisions about cancer, (institutions need to) involve patients to make sure their perspectives are being taken into account.”
To build the best plan for cancer care in the coming months, we need to all work together.