ILLUSTRATION: LUKE KNIGHT
When Anne Lyddiatt went into hospital for major surgery a few months ago, she went with her eyes wide open–and with a perspective that relatively few patients have: “I have a nursing background, but I don’t disclose that.” She has also been a long-time advocate for patients on behalf of organizations such as The Arthritis Society, speaking at medical schools and helping establish best practice guidelines.
Despite attending a pre-operative visit to discuss the surgery and her medication requirements with the hospital staff, Lyddiatt was dismayed to experience just the type of “adverse event” she tries to help prevent. The former nurse, who has suffered from arthritis and undergone numerous surgeries over the last 30 years, had requested not to be given morphine.
When a nurse came in to give her an injection after the surgery, Lyddiatt assumed it was time for the anticoagulant. “Big mistake–always ask. It was Demerol. About 20 minutes later, I’m thinking, ‘Why have I got this nausea and headache?’ only to find out later that I’d been given Demerol. I hadn’t even asked for anything for pain.”
The result was an extra night’s stay in the hospital for the wry Lyddiatt, who by her own admission “hates hospitals. I figure I can get better at home faster.”
Even before the surgery, the Ontario resident had had to remind the nursing staff and anaesthetist that she required steroids in her intravenous solution. “No one had read the pre-op….In my case, I was awake, I was able to look after myself and I know my surgeon. But I’m lying there thinking about friends I have who wouldn’t speak up for themselves.”
Though Lyddiatt says her experience pales compared with some of the “absolute horror stories” she’s heard, she is loath to point the finger. In health care, she says, “they talk about system failure, and I really think that’s it. There are an awful lot of really good people, but they have to work within the system.” Not only are there numerous health-care workers dealing with each patient, as opposed to just one doctor, but “we’ve become a paperwork system, and all these (reports) have to be generated. The bottom line is that the patient gets a bit lost in the shuffle.”
A shortage of staff, plenty of overtime shifts, a growing array of medications and the spread of superbugs aren’t making the delivery of safe health care any easier.
The Canadian Adverse Events Study (CAES), published by Dr. Ross Baker and Dr. Peter Norton in 2004, indicated that adverse events happened in 7.5 per cent of the hospitalizations reviewed. The first national study of its kind, it defined an adverse event as an unintended injury or complication that results in death, disability or prolonged hospital stay and that is “caused by health-care management rather than the patient’s underlying disease process.” Only a third of the adverse events were considered preventable, but nearly 26 per cent resulted in disability or death.
If the numbers were to be extrapolated to the 2.5 million annual hospitalizations in Canada of a similar type, 70,000 of the 185,000 associated adverse events would have been preventable, according to the study. Surgery, infection and medication were (and remain) the three areas most commonly associated with adverse events.
The publication of the study, combined with lessons learned from several public inquiries and with the increasing use of health-care accreditation, has resulted in a wave of efforts to address patient safety by governments, health-care professionals and patient advocates. These efforts include the establishment of the Canadian Patient Safety Institute (CPSI) and analogous provincial organizations, legislation requiring the early disclosure of critical incidents, and research on how to improve procedures, drug labelling and medical equipment to prevent errors.
But the patient safety movement has only just begun. It’s going to take a lot of work, research, education and a shift in mindset–from a culture of blame and secrecy to one of learning and openness–to really turn things around, say those involved.
“We’ve got a long way to go,” says Ryan Sidorchuk, leader of patient voice facilitation with the Winnipeg Regional Health Authority (WRHA) since 2004. As someone who experienced the worst that can happen when the system breaks down–he lost his two-year-old daughter Paige in 2003 as the result of an initial misdiagnosis of her kidney tumour–he literally made it his job to help patients work their way through what can be a labyrinthine health system.
Besides establishing the WRHA’s patient safety advisory council, he continues to contribute to initiatives such as the World Health Organization’s Patients for Patient Safety workshop. “There’s good work happening,” he says, “but we have so much to do in health care. It’s getting more complex every day.”
And there’s the rub, according to Dr. Alan Forster. The University of Ottawa assistant professor, a specialist in internal medicine, has done extensive research on patient safety through the Ottawa Health Research Institute. “One of the misconceptions people have is that it’s a simple problem to fix, and that if we just tried a little harder, or if we were a little smarter, that we would prevent all these bad things from happening,” he observes. “It’s very challenging to solve the problem.”
Often, adverse events occur because of the way the health-care system is organized. Health-care providers “talk about being ‘set up,’” explains Forster. “A number of circumstances occur in sequence, and the last person (is) there to make the mistake, because they had incomplete information, they may have been up all night working in the emergency room and, at the last minute, there’s two medications sitting side by side on the table with the same packaging, and they picked up the wrong one.”
Adverse events also occur at home, in long-term care facilities or at the doctor’s office, points out Sharon Sholzberg-Gray, president and CEO of the Canadian Healthcare Association (CHA), which represents hospitals and health organizations. Medication interactions, complex equipment and the risk of falls pose safety hazards both inside and outside hospitals. “The skills of the people coming through the home care program and the education of the consumer (are critical).”
It’s important to distinguish between adverse events that can be prevented and those that can’t, Forster adds, noting that all medical interventions–surgery, taking medications or just being admitted to the hospital–involve risk. At the same time, “People forget that there is a benefit to these. Even though there may be a rate of seven to eight per cent having a complication, 90 per cent of people are doing really well.”
Statistically, Canada has similar rates of adverse events to the U.K., Australia, New Zealand and the Netherlands. Comparing ourselves to the U.S. is difficult and not entirely helpful, says Forster, given that our southern neighbours have a private health-care system. “In the U.S. there’s a bit more of an imperative to (monitor) quality because of the private funding.” As such, “If you look at their investment into (patient safety) and their capacity, it does look a little bit better.” However, he points out that more than 45 million Americans–almost a sixth of the population–don’t have any health care at all. “Those patients aren’t having any adverse events, but their quality of care is abysmal.”
While Forster believes Canada is doing fine overall on patient safety, “there’s always room to improve, and I think we have a long way to go to improve to where we could be.”
Among the medical errors that are preventable, “there are likely things that could be done to make the situation better, like using new techniques that minimize risk, new equipment, altering the way we provide care, perhaps reducing the number of trainees,” Forster observes. Not only does that require resources–”if it comes to a decision between extra cataract surgery or putting in a bunch of people to monitor for errors, someone has to make that hard decision”–but there is also a need for more research on how to measure safety in hospitals and determine what actually works.
The biggest hurdle is establishing a network of health services researchers who are interested in patient safety and who have the right qualifications. “You have to have training in statistics and quantitative methods, and you also have to have knowledge of health care itself. It’s a long road to get there.”
Governments could be investing more into patient safety, Forster says, “but to be fair, I think they’re doing what there’s evidence for. It’s wrong to rush into investments when you’re not sure what you’re going to get out of that.”
The Canadian Patient Safety Institute is at the forefront of efforts to make the health-care system safer, and funding research is part of its mandate. Launched by the federal, provincial and territorial ministers of health in December 2003, this independent, not-for-profit corporation has been undertaking a number of initiatives, including funding and supporting the Safer Healthcare Now! Campaign. Led by a steering committee that includes Dr. Ross Baker, the University of Toronto professor who co-wrote the CAES, the campaign is encouraging hospitals to learn, share and adopt interventions that are “known to reduce avoidable adverse events.”
These approaches include deploying rapid response teams as soon as patient decline becomes apparent, putting in place a system of “medication reconciliation” to prevent adverse drug events, and minimizing the occurrence of hospital-acquired infections, which cause the deaths of between 8,000 and 12,000 patients a year in Canada.
According to the CPSI’s preliminary results, more than 600 health-care teams in 180 facilities are participating in the campaign, and they have already reported reductions in infections such as pneumonia acquired by patients on ventilators. For example, the South Shore District Health Authority in Bridgewater, N.S., reported that it had no cases of ventilator-associated pneumonia in 14 months.
In June, the institute introduced a hand hygiene campaign. “One of the most important things we can do is to encourage health-care providers to actually wash their hands,” says Dr. Susan Brien, the CPSI’s director of operations for Quebec, Eastern Canada and Nunavut. “Less than 40 per cent wash their hands. We know that many of the infections we’re dealing with in hospitals are transmitted from patient to patient by unclean hands.”
Though hand washing may seem an obvious requirement, Brien notes, “often, providers at the bedside see it as a barrier to (doing) their work” because it takes time, and the means to do it might not be right at the patient’s bedside. She adds that patients have a “great chance to be involved” in their care by requesting that their nurse or doctor scrub up or use antibacterial gels.
The CPSI, in collaboration with the Institute for Safe Medication Practices Canada, has also been advocating medication reconciliation to prevent pharmaceutical errors. “That is one of our main strategies,” notes Brien. In this process, the patient’s list of medications is compared at key points, such as admission to hospital, transfer between wards and discharge. The idea is to spot discrepancies and reconcile them with the patient’s doctor, to prevent the wrong dosage or drugs being administered.
Patients have a role to play in this, too, says Brien. “They cannot be passive (participants) when they’re having a journey within our system. They need to bring their medications, they need to tell the doctors and nurses what they’re actually taking and what they’re not taking. We fully advise that patients not only bring a family member to their appointment, but (that this person) stay with them in the hospital and be an advocate, clearly communicating with the staff.”
One of the most helpful things people can do, adds Forster, is to keep a diary or log of their medication history–the name of the medication, the dose and the reason it’s being given–as well as their doctor’s visits and medical conditions. “If they would bring their diary with them, that would be very useful.”
Individual jurisdictions are also doing their bit. Between 2005 and 2006, for example, the Saskatchewan Health Quality Council looked at the effectiveness of medication reviews at eight long-term care facilities across the province. “Primarily what we were encouraging was an enhanced clinical role for the pharmacist,” says Laurie Gander, the council’s program director. In Saskatchewan, long-term care centres have contracts with their local pharmacies, but the level of communication between pharmacists and the facility’s medical staff varied. “What we found was that, of the 70 per cent of residents who had a documented medication review, an average of 2.5 drug-related problems were identified (per patient),” Gander says. The pharmacists then worked with facility staff to resolve the problems, and the patients’ doctors agreed with 80 per cent of some 800 recommendations made.
The CHA is advocating nationwide use of an electronic health record (EHR) to share health-care information, including records from long-term care facilities, pharmacies and family doctors, says Sholzberg-Gray. “If you only know part of the record, that’s not good enough. (The EHR) would reduce any drug prescribing that’s inappropriate…and errors due to handwriting. It would also save costs because things wouldn’t have to be duplicated.”
She points to the U.S. Veterans Health Administration as a model, with more than 13 million clients on its electronic system. “They’ve increased their efficiency, their effectiveness and their safety.”
Some provinces, such as Alberta, are well ahead of others in this area, observes Sholzberg-Gray, but “the only way to do it is to have every part of the health system on it.” The cost would be in the billions, but it’s something the federal government should be helping the provinces and territories implement, she says. “It’s expensive, but it’s more expensive if you don’t do it.”
There are, of course, privacy considerations. “Patients are leery about that being started,” comments Lyddiatt, “because they’re afraid about more medication (errors), they’re afraid about what happens if the computer breaks down and the system crashes…what happens if somebody else gets access to my records?”
Access to information–or lack of it–is another big concern for patients and their families, especially when something goes wrong.
That was highlighted in May, when Newfoundland and Labrador Premier Danny Williams announced a new task force on the management of adverse health events after his government acknowledged that flaws in more than 300 estrogen/progesterone receptor tests done since 1997 had resulted in the inaccurate diagnosis and treatment of breast cancer patients in the province. Of the 300 cases involved, 176 women have died. The government’s admission came only after women affected by the errors filed a class action lawsuit.
George Tilley, the CEO of the Eastern Health regional authority, stated that “at no time did Eastern Health withhold any personal information from any of the patients impacted,” and that delays in the retesting process might have led some patients to feel they were not informed in a timely way.
In an unrelated case, Eastern Health recently suspended a radiologist under review for 6,000 questionable reports on around 3,500 patients.
On May 30, Williams stated, “The revelations of the last two weeks have no doubt affected public confidence in how the health system in our province operates and how the public is kept informed on issues of importance.”
But the lack of transparency in health care is not unique to Newfoundland.
One of the CPSI’s most challenging tasks is to encourage a culture of openness in health-care organizations. While health-care staff must disclose adverse events to patients, and the Canadian Council on Health Services Accreditation has put in place “required organizational practices” with regards to disclosure, there is still reticence about sharing information more widely.
Recently, the CPSI developed national guidelines for disclosing adverse events. “What we’re concerned about is that we need to learn what’s happening in hospitals and other organizations and share that information so we can prevent it from happening to another patient,” observes Brien. “At this point, providers are scared to say that because they’re embarrassed and they feel guilty, but they’re also afraid they might lose their jobs.”
Sholzberg-Gray notes that disclosure is “obviously the best way to proceed with people.” The problem, she says, “is that legal systems aren’t keeping up with that…Everyone in the health system (is) worried about legal suits, but I think the evidence shows that when people are straightforward, when they’re transparent and they disclose, families are much more reassured, and that tends to minimize lawsuits.”
Indeed, observes Brien, “The reason why patients sometimes sue organizations is because they can’t get the information they want. Previously, that was the only way they could get information.”
The western provinces have been leading the way towards greater openness. In 2002, Saskatchewan became the first province to require reporting of all critical incidents to the provincial health department. More recently, Manitoba became the first province to not only require critical incident reporting, but also to allow patients and families to file reports.
The legislation came too late to help Ryan Sidorchuk. Several years after his daughter’s death, he still doesn’t have all the answers. “The way it was explained to me was that pathology is an inexact science,” he says about the fact that it took two biopsies to identify his daughter’s tumour. “There was a lot of organizational damage control.”
However, he is optimistic about the recent progress on patient safety in Manitoba and intends to keep it going. “For me, where we will get the biggest bang for our buck is culture change: moving from one of blame and opaqueness to one of learning and transparency.”
That may take a while, says Forster. “Focusing on something like culture is very difficult. It’s much easier to focus on concrete activities where there can be measurable improvements over time.” In the meantime, “the patient needs to be looked after, and the thing that would help is to not assume that information is being transmitted between all sectors of the health-care system.”
Patients must take a more active role in their care, too, asserts Lyddiatt. “That’s absolutely essential in this day and age. You’ve got to realize that, no matter what we have in place, you’re dealing with humans.”