John Jefferson isn’t the type of guy to back down from a challenge. So, when Jefferson’s care team told him they couldn’t save his foot after a motorcycle accident ripped out his talus, a major ankle bone, he refused to accept the possibility of amputation. Jefferson recalls telling his wife, “This is bullshit. There has to be a better way.”
After the appointment, he drove home to White Rock, British Columbia, and Googled “talus bone replacement” and discovered an experimental procedure in the United States using 3D printed copies of the bone made from titanium. Jefferson pitched the procedure to his orthopaedic surgeon, Dr. Alastair Younger, who got St. Paul’s Hospital in Vancouver on board.
One hurdle remained: approval from Health Canada.
After more than two months of going back and forth with the regulator trying to get approval for the procedure, Jefferson emailed federal officials a personal plea. Sure, he may lose his foot if the surgery failed, but without the surgery, he’d lose it anyway, Jefferson reasoned.
“Let’s give it a try,” he recalls urging Health Canada. “There’s a real, live person sitting in a wheelchair on the other end here.”
Health Canada approved the procedure a few days later, and Jefferson underwent the first 3D printed talus bone surgery in British Columbia in May, saving his foot from amputation. Now, he’s walking again and looking forward to getting back on his motorcycle next spring.
Jefferson’s story illustrates a new level of partnership between patient and surgeon that may not have been possible just a few decades ago. With the rise of the internet and social media, patients are better informed and more connected than ever, says Younger.
And with patients’ growing awareness of their options, comes new power to transform care. Patients like Jefferson don’t have to resign themselves to accept the care that’s offered, Younger explains. “This story provides more hope that things can change, and stories can be heard,” he says.
As health professionals face increasing system pressures, more empowered patients can help bridge gaps in care.“Having a patient that’s able to push things forward and keep things moving and quarterback this whole process is really helpful,” says Younger.
However, as many doctors across Canada are learning, navigating this shift in power can be tricky. More engaged patients bring new demands and challenges for health systems and providers.
“Patients’ perception of the care we provide, and trying to negotiate that, can be extremely difficult,” says Younger, who specializes in foot and ankle surgery. Even when doctors do the right thing and fully inform patients about the ins and outs of their care, “you can potentially increase your risk of a lawsuit,” he says.
Complaints against doctors have risen steadily over the past 15 years, according to the Canadian Medical Protective Association (CMPA). Last year, there were 5,628 new regulatory matters and 1,955 hospital complaints, up 161 per cent and 124 per cent, respectively, from 2005.
“A lot of the complaints, at least half, have a communication aspect,” says CMPA Associate Executive Director Dr. Douglas Bell. Digging into these cases, CMPA found that patients complained because their doctors were rude, condescending or dismissive, or because they did not receive or understand necessary information about treatments.
Bell partly attributes the rise in complaints to changing patient expectations. “Gone are the days of doctor knows best,” he says. Patients want their doctors to listen, empathize and discuss options, instead of giving orders.
Yet, increasing time pressure, administrative responsibilities and burnout in medicine are making that more difficult than ever, Bell says. More than a quarter of physicians surveyed by the Canadian Medical Association last year reported high emotional exhaustion, and nearly a third reported symptoms of burnout.
“A physician suffering from burnout is less empathetic, and if they’re less empathetic, they will generate more complaints,” Bell explains.
For many patients, feeling heard can be enough to resolve disputes with doctors, he says. The College of Physicians and Surgeons of Ontario recently introduced an alternative dispute resolution process involving a mediator to handle such cases without lengthy investigations.
“If the patient feels they’re able to tell their story, and the physician listens to them, they tend to find that a better experience,” Bell says. Really listening doesn’t take as much time as doctors may fear, he adds.
A recent American study found that the average doctor interrupts patients within 11 seconds, yet uninterrupted patients take between 2 seconds and just over a minute and a half to explain their concerns.
Gone are the days of doctor knows best. Patients want their doctors to listen, empathize and discuss options.
Indigenous communities have long pushed for a greater say in their care, and in British Columbia, they’re overhauling the health system to better meet their needs. Since the province began transferring responsibility for Indigenous health to First Nations people in 2005, the First Nations youth suicide rate has dropped by 38 per cent and the gap in diabetes prevalence between Indigenous and non-Indigenous British Columbians has shrunk 47 per cent.
“We want to have input into caregivers’ work, how they work, how they interact with us, their cultural safety and humility. They need to fit into our circle of wellness, not the other way around.” Above all, we want kinder care, he says.
Self-determination was a critical factor in these improvements, says Dr. Evan Adams, Chief Medical Officer of the First Nations Health Authority.
That meant a fundamental reworking of health workers’ relationships with patients and each other.
“One of the things that we quickly realized that made us different from other health care workers in BC was that we were seen as cousins,” Adams says. “I’m not just a nameless, faceless technician.”
Re-conceiving health teams as a kind of family that included patients as members also meant “there is a reciprocal accountability between us,” he says. This can be tough for health providers to wrap their heads around, Adams adds. “We’re not used to getting a report card from our clients.”
At the University of Toronto, surgical oncologist Jory Simpson [PGME ’12 (Surgical Oncology)] is trying to change that by enlisting breast cancer patients to share unfiltered feedback about their surgical journey with medical students.
According to Simpson, medical schools can teach students how to be surgeons, but only patients can teach what it’s like to be on the other end of the scalpel.
“The historical problem with surgical clerkship has been that a clerk will just parachute into the operating room,” Simpson says. “They’ll have never met the patient, they’ll never see the patient again, and in that moment, they may feel just like a technician.”
Through the Patient as Teacher Program, which rolled out across the medical school last year, students participate in two discussions with patients during their surgical clerkship and create a piece of art to reflect on the experience. The patients decide what to teach, and no doctors are in the room for the talks, Simpson notes.
“This whole program for them is about empowerment.”
Unlike the scripted simulations of encounters with patients commonly used in medical training, “this is just meant to be a storytelling experience,” he says. “If it resonates with you, you’ll never forget it.”
In interviews, students described the experience as inspiring and powerful, and patients reported that sharing their stories was cathartic and healing.
The value of this kind of exchange goes beyond medical education, says Simpson. He sees potential for its use in remediation of unprofessional behaviour and combatting burnout.
Federal funding for patient-oriented research has also spurred health investigators to involve patients in a more active role in studies over the past decade.
“I never would have dreamed of engaging patients before,” says Gary Lewis, the principal investigator of Diabetes Action Canada, a chronic disease network funded through the federal initiative, and director of U of T’s Banting and Best Diabetes Centre.
The network brings together 100 researchers and 75 patient partners across Canada to develop research projects to improve the lives of people with diabetes. Patients are involved at “every single level,” says Lewis, from reviewing projects to delivering training to sitting on the organization’s steering council.
Although initially skeptical, Lewis soon discovered patients had a “tremendous amount to add.” For example, although Diabetes Action Canada initially didn’t focus on foot care and preventing amputations, “patients told us right off the bat this is actually our number one concern,” and the organization now has an active program tackling the problem.
Lewis, a professor in the departments of medicine and physiology at U of T, also sees the initiative rebuilding trust at a time when the public is growing more skeptical of medical expertise.
“Patients don’t trust the research enterprise, they don’t trust pharmaceutical companies, and they don’t trust the information doctors are giving them,” he says.
Researchers haven’t paid enough attention to the link between public trust and funding for their work, “but as a funding crunch has happened… we need to be accountable and make sure our research is relevant,” says Lewis.
Growing up with Type 1 diabetes, Adhiyat Najam often felt frustrated that so much research focused on finding a cure instead of improving patients’ quality of life. By getting involved in the research process with Diabetes Action Canada, “it’s fulfilling to see that patient side being heard,” she says.
Najam hopes partnerships in research will become more accessible to a wider variety of patients in years to come. The large time commitments required by many projects limit the pool of potential patient partners to wealthier people and those who are already involved in research through school or work. Better compensation and more flexible commitments might help with that, she says.
Yet with only a year of federal funding left, the future of Diabetes Action Canada and other patient-oriented research initiatives remains uncertain.
“This infusion of money and ideas has started to create a paradigm shift,” Lewis says. “However, there’s always the risk of backsliding.”
And for patients like Jefferson, the push for more power in their care continues.
“Absolutely you’ve got to be your own advocate,” he says. “If you don’t like the answer you’re getting, go see if you can find another one.”