The psychological burden of delayed cancer surgery—what can we learn from this pandemic?

Here we are again, in another pandemic surge. We have been here before. What lessons have we learned? Have we learned anything?

I wear multiple hats. Professionally, I am a researcher in a health informatics programme. My training is in human factors psychology—a discipline focused on designing human-centered solutions to support the work of people in complex, real-world environments. [1]

I’m also a breast cancer survivor.

The pandemic has forced the professional and the personal to blend together. I am different now—so tired—and I wonder: what can professional “me” learn from analyzing the experiences of the personal “me?”

As a cancer patient you are always waiting for something. At diagnosis, you are waiting for your test results, to find out whether you’ve been handed a death sentence. Surgery is a waiting game. Has it worked? We don’t talk about it much, but waiting casts a shadow on your every hope and plan. You are scared, but you look forward to being on the other side of it. And you prepare—psychologically and logistically—taking time off work, arranging for childcare, planning for caregiving support. It’s not just about you, the planning involves your family, your colleagues.

Covid-19 has amplified this waiting game. At the outset of the pandemic, countless cancer patients had treatments cancelled—or rather, postponed. I could relate and, with a colleague, I developed and launched a questionnaire to capture this fleeting moment in an unprecedented time. Our findings revealed that nearly half (44%) of US breast cancer survivors experienced delays in care in the early weeks of the pandemic. [2]

My own surgery—scheduled to take place in late March, soon after the pandemic began—wasn’t to remove a cancer, for which the wait can be excruciatingly overwhelming, but to have a plastic surgeon do a reconstruction revision of my right breast. You may think that a reconstruction surgery isn’t necessary, nor urgent, but rather aesthetic. But for me, it involved the removal of a great deal of necrotic (dead) and inflamed tissue damaged by 34 rounds of radiation. Living in pain and with physical limitations, I could no longer pick up my toddler.

I’d planned the surgery date around my work, taking intermittent medical leave for the semester, impacting my pay. I planned around my daughter’s school, and my husband’s and mother’s schedule, so they could care for me and the children. I looked forward to the summer, when I would be healed and could enjoy it with my family. The logistical aspects of planning were complex; the psychological aspects, were burdensome.

Shortly before my surgery, and the same day that my home state, Illinois, closed its schools, the American College of Surgeons (ACOS) released guidance cancelling all “elective” surgeries—including cancer surgery.

This was an uncertain time. The previous week, mindful of the risks of covid-19, I’d reached out to my oncologist and asked if I should cancel my surgery. “I don’t know what to tell you” she said “you are right to worry, but there are no official guidelines at this point.” I contacted my plastic surgeon, whose nurse told me to look at the at covid-19 guidelines on the hospital website. My providers didn’t know what to do either. My oncologist sent me a message pointing me to the ACOS guidance when it came out. I waited. Two days later, the phone calls came—from three different people in a span of a few hours—two different schedulers, and my surgeon’s nurse. All were calling to cancel, yet none seemed to know the others had called.

The next day, despite all this, I received a text confirming my scheduled surgery. I ignored it.

Much later, as elective surgeries were being brought back, my surgeon’s nurse called. “We are now rescheduling, are you interested?” I tried to ask questions, in vain. “We are simply calling people to ask if they are interested. If you are, feel free to reach out. Have a nice day!” she said. Should I reschedule? How to balance the risks? How to decide? The burden was on me—the patient.

And so the human factors psychologist “me” asks: how can we reduce the burden of this experience? And as I reflected on my experience, of uncertainties, delays and decisions, questions came to mind about the multitude of system factors that, as a researcher, I would investigate—decision making under uncertainty, managing information, interacting with multiple providers and the healthcare system (through various communication modalities), and navigating individual differences. The last one strikes me. In the absence of systematic guidance, other factors—differences in style, personality, risk aversion, biases, relationships—get amplified, resulting in inconsistencies across providers.

Why is it important to take a human factors approach, looking at the patient experience? It is the patient, and the people around them, who live with the consequences and outcomes of the delays—whether it’s mortality, morbidity, mental health, or challenges associated with logistics such as caregiving support, childcare, and work. The decisions around rescheduling elective surgery after delays is a complex one—depending on individual circumstances and biases (on their part, and their clinicians’). It is also a uniquely stressful one, that places huge and underappreciated burdens on the patient and their family.

Human factors science offers a systems perspective, and a set of methods to capture the work of patients during the pandemic and beyond, with the objective of informing solutions. Whether it be a conversation guide or a phone app, designing effective solutions is impossible without the contribution of human factors science. As so many people with cancer (and other conditions) continue to face and navigate uncertainties around their healthcare across the pandemic, the integration of human factors science as part of multi-disciplinary teams involved in research, operations, and policy-making is urgent.

But here we are again. Hundreds of hospitals across the US are postponing elective surgeries due to an surge in covid-19 infection rates. This will mean hundreds of thousands of patients are once again thrown into a difficult and uncertain situation. We must make sure we learn from their experiences this time around, and apply these lessons in the future.

Elizabeth Lerner Papautsky is a breast cancer survivor, and a researcher in patient safety. Twitter: @elpPhD

Competing interests: none declared

References:

Information for Authors