After five miscarriages, and with the odds of ever having children stacked against her, Lee Dix was glad to get a second opinion. It was the summer of 2000, and the Toronto woman had been referred to a gynecologist based at Scarborough Hospital, Dr. Richard Austin, whom she hoped would eventually deliver her first baby. But far from feeding her optimism, Austin told Dix she had a benign tumor called a fibroid in her uterus, and made a provisional diagnosis of endometriosis, a painful disorder where cells on the uterine wall grow out of control. Between 2002 and 2005, the greying physician performed two operations on Dix—one a total abdominal hysterectomy, the other to remove her remaining ovary (she’d had one taken out in a previous operation). “I just went with what he said,” Dix now recalls. “I trusted doctors, and I thought that if anyone is going to work on me, they must have the proper schooling and knowledge.”
With that, her dream of having children ended. By 36 she was entering menopause, and thus began a medical nightmare she now blames on mistakes and misjudgments committed by Austin. She missed months of work in her job as a receptionist, suffered depression and still deals with bowel control issues because, she alleges, Austin twice perforated her large intestine while she was under the knife. More stunning still, the 41-year-old has since learned that the surgeries may have been wholly unnecessary.
In a civil suit recently filed in Ontario Superior Court, she cites the results of ultrasounds and other tests performed before and after the procedures showing no evidence of endometriosis or fibroids, raising the question of why Austin suggested surgery at all. The whole experience has left her heartbroken—and downright fearful of anyone in a white jacket. “I haven’t even gone for my yearly physical,” she says. “I don’t want to see any doctors. I don’t know who to trust.”
Dix’s allegations have not been proven in court, and Austin has not yet filed a statement of defence (his lawyer declined to comment). But she’s not the only one telling horror stories about doctors these days.
From the pathology scandals in Newfoundland and Windsor, Ont. to an O.R. slip-up that nearly cost former NHL coach Jacques Demers his life, highly publicized medical errors are taking a big bite out of Canadians’ confidence in the medical profession, leaving many suspicious before they so much as take a seat in the examination room. In a poll taken last week for Maclean’s, 40 per cent of respondents said they believe Canadian doctors care less about their patients than they did 10 years ago; only six per cent said physicians care more. One in five said doctors are more likely to make errors than they were a decade earlier, and the MDs didn’t score well on questions of honesty, either. More than half the respondents to our poll said they believe doctors do not readily acknowledge their mistakes.
This is not about respect, so much as trust—92 per cent of those surveyed said they hold doctors in high esteem, and an overwhelming proportion of Canadians believe their own GPs do a good job. But there’s no denying the impact of the recent high-profile cases, given the disproportionately large number of people affected. The doctor at the centre of the Windsor controversy, for example, went on interpreting cancer tests for thousands of patients despite suffering from cataracts that hospital officials acknowledge may have compromised her work. In Newfoundland, pathology mistakes between 1997 and 2005 resulted in wrong test results going out to nearly 400 breast cancer patients, 108 of whom have died while untold others lost breasts only because they started treatment too late. In Saskatchewan, a government review of 68,360 images interpreted by Yorkton radiologist Dr. Darius Tsatsi uncovered 1,988 mistakes that will affect patients’ treatment. In Toronto, Austin has faced complaints from scores of his former patients, at least 38 of whom have filed civil suits like Dix’s, claiming unnecessary surgery or botched procedures.
These horror stories have made Canadians wary, says Mario Canseco of Angus Reid Public Opinion, who oversaw the Maclean’s poll. “Not only do they worry that there will be mistakes, but they assume so,” he says. “Even if you’re happy with your GP, you see what’s happened to those around you. You think it may be your time next.”
For doctors, this is an unaccustomed, and not especially pleasant, spot to be in. For generations, physicians have enjoyed greater public respect and appreciation than practically any professionals—a reflection, perhaps, of their status in many communities as the most educated people in town. That’s changing, however, as post-secondary education becomes the norm and Canadians in general grow less deferential. “There used to be a very paternalistic relationship between doctors and their patients,” says Dr. Rocco Gerace, registrar of the College of Physicians and Surgeons of Ontario. “It worked both ways. Patients would essentially give doctors the decision-making ability, as opposed to considering options and then consenting. It’s changed dramatically, and I think for the better.”
That shift has been accelerated by the Internet, which puts not only diagnostic information but reviews of individual physicians at the fingertips of patients. RateMDs.com, a California-based site that went online in 2004, has doubled its traffic every year since, with Canadians as its most enthusiastic constituency. The site now has user-submitted ratings for over 85 per cent of Canadian doctors, and a surprising 45 per cent of its 1.2 million monthly visits originate in this country. The phenomenon speaks not only to patients’ doubts, but an appetite for frank criticism that Hugh MacLeod, chief executive of the Edmonton-based Canadian Patient Safety Institute, says will only grow. “For those in the system who think things are getting wild now,” he says, “put on your seat belts.”
All this crowd-sourcing raises an obvious question: are medical mistakes becoming more common? Or are they merely being amplified by proliferating media, both social and mainstream? Geoff Norman, a McMaster University psychologist who studies how doctors make errors, believes recent scandals played out in the media have simply caused patients to demand reviews and investigations, the coverage of which has fed impressions that things are going awry. Doctors are more willing to own up to mistakes, he argues, and he points to the publication in 2000 of “To Err Is Human,” a report by the Washington-based Institute of Medicine, as a watershed moment in encouraging practitioners to acknowledge their fallibility. “Now,” he says, “there’s almost like a legislative review process when something goes wrong.”
The few statistics we have on the issue inspire less certainty. In 2004, researchers at the University of Calgary and the University of Toronto produced a landmark study of medical mistakes, and while they have yet to publish an update, those first indicators were enough to set off alarm bells. Some 2.5 million people admitted to hospital each year in Canada suffer what health care administrators call “adverse events” (i.e. errors), the study found, while somewhere between 9,250 and 23,750 died in 2000 because of avoidable mistakes in their treatment. Patient safety advocates say things are improving, but surveys done since suggest only marginal gains. In 2002, some 20 per cent surveyed in Pollara Inc.’s exhaustive Health Care in Canada Survey said they’d experienced some sort of adverse event while receiving care, from misdiagnosis to surgical infections to receiving the wrong medication. By 2007, the number had fallen by only one percentage point.
How many of those cases can be laid at the feet of doctors is unclear, but Canadians are making as many allegations as ever about physician misconduct. Since 2005, the annual number of complaints to provincial colleges of physicians and surgeons has climbed from 5,482 to 5,990, with the majority of reports revolving around matters of competence and the doctor’s behaviour (each province, it should be noted, defines complaints differently).
What practitioners, safety advocates and patients can agree on is that pressures within the system are often to blame when things go wrong—not least physician shortages. While more than a third of respondents to our poll believe doctors have their patients’ best interests at heart, 39 per cent say physicians are more concerned about dealing with patients as quickly as possible. And some of the most damaging scandals in recent years have occurred in parts of the country that have trouble recruiting and keeping experienced doctors, notes Dr. Peter Hutten-Czapski, the former president of the Society of Rural Physicians of Canada. Rural communities get a lot of people who are fresh out of residency training, because most doctors are born, trained and have built lives in big cities, adds Hutten-Czapski from his clinic in Haileybury, Ont., about 200 km northeast of Sudbury. “If your wife’s an aerospace engineer, a ballerina or an architect,” he says, “it’s not likely you’re going to move to Engelhart, Ont.”
This seemingly basic problem creates no end of complications, starting with a relentless turnover. One recent study suggests one in seven doctors in rural Canada plans to move in the next two years. Another is a severe shortage of specialists, who in isolated areas tend to be overworked, inexperienced or both. The problem is particularly acute in Newfoundland, which is known for its dependence on foreign-trained medical graduates to fill the demand for specialists.
Janet Henley, a lawyer and breast cancer survivor from St. John’s, learned that the hard way. She was 40 years old in 1997 when doctors performed a lumpectomy to remove cancer from her breast. After sending a tissue sample to the local pathologist, they told her she was cured. Four years later, the cancer had grown back, forcing Henley to suffer through a double mastectomy.
Exhausted, weak and hospitalized with severe depression, she began to wonder whether she might have avoided such drastic treatment. After seeing news reports that Eastern Health, the authority responsible for Henley’s treatment, had botched hundreds of other women’s breast cancer hormone receptor tests, Henley began to question her own diagnosis. In 2008, she had the tissue that was collected in 1997 sent for a second opinion at Johns Hopkins Breast Cancer Center in Baltimore. They found cancer on nine out of 14 of the slides, Henley alleges, including one lesion that measured a full 1.4 cm in diameter. The pathologist had evidently missed them all, and Henley is now suing Eastern Health for $5 million.
The whole experience has left her with a checklist of unanswered questions. Did the pathologist who handled her slides have proper training? Was that doctor overworked? Did he or she have a history of misdiagnoses? Henley may never know for sure, because when she asked Eastern Health whether it had ever reviewed the pathologists’s work, she was told that the information was confidential (her case was not part of a judicial inquiry into problems at Eastern Health which focused on hormone receptor tests). Nor can she find out whether any other women have sought disciplinary action against Dr. Jessica Shepherd, the pathologist who interpreted her test samples, because the provincial college of physicians and surgeons isn’t required to reveal the information.
That’s left Henley, like so many Canadians, doing her own research on the Internet. So far, she’s determined that Shepherd was trained at the University of the West Indies in Trinidad and Tobago, and is now an associate professor of pathology at the University of Western Ontario in London, Ont. Shepherd declined comment this week through an office assistant, and Henley’s allegations have not been tested in court. But the Newfoundland woman is not about to let up. “I would like to know whether my case was unique,” she says. “I’m not sure how you miss cancer on nine out of 14 slides.”
Her frustration points to a lingering problem when it comes to getting doctors to face up to their shortcomings: they are powerfully protective of their reputations, and have the money to be so. While some physicians point to declining numbers of malpractice suits as proof they are making fewer mistakes, others claim lawyers for the MDs have been discouraging such claims by dragging out litigation and exhausting the patients’ financial resources. Even when an issue doesn’t go to court, doctors are quick to go on the defensive, says Dr. Brian Goldman, host of the CBC Radio program White Coat, Black Art and author of The Night Shift, a forthcoming book that explores doctor error, among other issues. “I think physicians have been the single greatest impediment to patient safety in Canada,” says Goldman, who is an emergency room doctor at Toronto’s Mount Sinai Hospital. “I’m not saying they actively block the search for truth in some evil and nefarious way. But they tend to feel a powerful sense of shame at any insinuation that they’ve been less than competent.”
That attitude is born of an atmosphere in which errors can have catastrophic impact on one’s career, he says. “It’s hard to take a non-emotional look at mistakes when you’re thinking, ‘I’m terrified.’ ” But as the proverbial smartest people in the room, MDs are also prone to overconfidence—if not plain arrogance. Worried by U.S. studies suggesting such doctors can have a negative impact on patient care, professional colleges across the country have adopted guidelines to combat physicians who belittle colleagues and disregard the feelings of patients, à la Gregory House of TV fame. And physicians’ reputation for supreme self-confidence may explain why other health care professionals score higher ratings from the public when it comes to personal integrity. A 2009 Gallup poll indicated that Americans rate nurses’ honesty and ethical standards higher than doctors’—83 per cent versus 65 per cent (the Maclean’s poll also found marginally more respect for nurses and farmers than for doctors).
The good news is that the profession as a whole is starting to get the message. The Canadian Medical Association (CMA), representing some 68,000 physicians across the country, has supported numerous initiatives aimed at curbing medical errors, such as the introduction of pre-surgery checklists, the establishment of health-quality councils across Canada that measure and report on quality of care, and the creation of disclosure guidelines by the Canadian Patient Safety Institute, which promote transparency about medical errors. Last week, the association published a report called “Health Care Transformation in Canada,” calling for a culture of patient-centred care, including more timely access to services and greater accountability in the profession. “The report,” says CMA President Dr. Anne Doig, “is predicated on the principle that we need to do our jobs better.”
Doig acknowledges concern about some of the findings of the Maclean’s poll. But she wonders whether perceptions that doctors care less about patients and are more likely to make mistakes speak more to lack of access to, or long waits for, medical care. She also notes that increased disclosure of medical errors can be falsely interpreted as an increased incidence of mistakes: “We’re not making more mistakes than we ever have, necessarily.” Treatment, she adds, is more complex than it used to be and expectations are now higher. “Life was simpler,” she says, “when the doctor went around in a horse-drawn buggy with a little black bag and did the best he could.”
Perhaps. But such reassurances offer small comfort to patients like Lee Dix. These days, she quietly struggles through her shifts at a downtown Toronto law firm, pondering reforms that might save others the misery she’s endured—greater transparency when it comes to doctors’ past blunders, say, or pre-surgery checklists. “But there’s a lot of things that occurred in my case that wouldn’t have existed on any checklist,” she says. Mostly, she wonders what might have been. “Not being able to have children haunts me pretty much every day.”
Poll results are from an online survey of 1,024 randomly selected Canadian adults contacted by Angus Reid Public Opinion on Aug. 5 and Aug. 6, 2010. Respondents are Angus Reid Forum panelists. Margin of error is ± 3.1 percentage points.