At this point, the only thing we can say for certain is Brian Sinclair was not invisible the night he died.
That may seem like a somewhat silly observation. But after a solid, painstaking month of testimony at an inquest into Sinclair's death, it's important we eliminate invisibility as a contributing factor.
At one time, it seemed the only logical explanation.
Sinclair died in September 2008 after spending 34 hours in the emergency room of Winnipeg's Health Sciences Centre. A double amputee who was confined to a wheelchair, Sinclair was suffering from a bladder infection brought on, in part, from a blocked catheter. Despite arriving at the ER with a note from a walk-in clinic outlining his condition, he was neither triaged nor seen by a physician.
Instead, he was wheeled into the ER waiting room, where he would sit for nearly a day and a half. At one point, he vomited and was provided with bowls. Housekeeping was called to clean up the floor around his chair.
The inquest heard Sinclair had been dead for between two and seven hours before anyone noticed.
In the wake of Sinclair's death, there was an early suggestion that somehow he had just faded into the background of the city's busiest ER. Why and how? Perhaps because he was a poor, chronically but not critically ill aboriginal man, and a frequent ER visitor.
The inquest testimony clearly showed he was seen. A 13-page administrative report written by senior HSC managers, and submitted as evidence at the inquest, concluded Sinclair had been observed 17 times by ER staff, including security guards. In several of those instances, specific concerns were raised about his condition.
"Each of the staff who saw or interacted with Mr. Sinclair during this 34-hour period mistakenly assumed that he had been triaged already and was awaiting a bed in the back (in the treatment area), that he had been treated and discharged, that he was a patient awaiting pickup under the Intoxicated Persons Detention Act, or that he was just there because he needed a warm place to rest," the inquest heard.
The administrative review may have done a good job identifying the misguided assumptions. However, it did not confront the most disturbing question: Why did ER nurses ignore warnings from other staff members about Sinclair's deteriorating condition?
The inquest resumes Monday, and there will be testimony that helps in part to answer that question. It will be the top concern when we hear testimony from the nurses on duty during Sinclair's 34-hour stay.
The absence of that testimony has not, however, stopped various parties from offering their own theories.
Lawyers representing the Sinclair family have blamed the incident on racism. They demanded the inquest be expanded into a judicial inquiry that investigates the treatment of aboriginal people by the health-care system.
Racism became a stronger narrative after news reports revealed patients like Sinclair -- indigent, homeless, sometimes aboriginal and often suffering from substance abuse -- were warehoused in a section of the ER indelicately named "Catfish Corner."
"People made judgments about him," said Vilko Zbogar, lead attorney for the Sinclair family. "He was aboriginal, he was dishevelled, a double amputee and he was in a wheelchair. Do people like that get treated differently? Everyone will deny it, but the fact is that some people get better care than others."
However, taken in its entirety, inquest testimony to date suggests there were other, perhaps more deeply imbedded issues at work in this tragedy. Issues related to the very culture of health care and what appears to be a reluctance by health-care professionals to listen to the concerns of non-professionals.
The public only gets to hear about a small fraction of the critical incidents that occur in hospitals. Even so, far too many of the cases that are revealed contain a common thread: conflict and a breakdown in communication between medical professionals and the people they are trying to help.
The inquest is perilously close to discussing this phenomenon. The closest it came was during testimony by Dr. Thambirajah Balachandra, Manitoba's chief medical examiner. Balachandra was taunted by Sinclair family lawyers to identify racism as the key cause for Sinclair's mistreatment. The medical examiner made it clear there were, in his opinion, much bigger issues at work.
"Even if Snow White had gone there," Balanchandra told the inquest, "she would have got the same treatment under the same circumstances."
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On May 28, 2009, 22-year-old Kane Gorny lay in a south London hospital bed, literally dying for a glass of water.
A talented footballer and runner, Gorny had only just recovered from a brain tumour. However, medication to control the cancer had weakened his bones, ultimately requiring him to have hip surgery. His condition was further complicated by diabetes insipidus, a disease that produces insatiable thirst and highly diluted urine. He was taking hormones to help him retain fluids.
Following surgery, Gorny became dehydrated and asked repeatedly for something to drink. Despite his complex condition, hospital staff denied him fluids and the hormones.
Now desperate, Gorny used his cellphone to call the 999 emergency response line. Two police officers attended the hospital and several times heard Kane beg for something to drink. Doctors refused to allow police to speak to Kane and eventually turned them away.
A few hours after the police left, Gorny died of profound dehydration.
At an inquest this past summer, a coroner determined Gorny's death was the result of a "cascade of individual failures" by those responsible for his treatment. "Kane was undoubtedly let down by incompetence of staff, poor communication, lack of leadership, both medical and nursing, a culture of assumption," the coroner wrote.
The Gorny case is hardly unique. With a simple Google search, it does not take long to build a tragic list of incidents from all over the world where patients died -- much like Brian Sinclair -- after medical professionals ignored the concerns of patients, families and other laypersons.
How big is this problem? It's nearly impossible to tell, because the health-care system keeps a tight lid on critical incidents -- cases where medical mistakes result in harm or even death to a patient. They are not regularly reported within health-care facilities. Of those that are reported, only a handful are ever exposed to public scrutiny.
Although data is hard to come by, there has been some progress in identifying the common threads that run through critical incidents.
Hugh MacLeod, CEO of the Canadian Patient Safety Institute, said his organization has collected data from individuals and health-care authorities across Canada. In many of those cases, doctors and nurses dismissed the concerns of patients, their families and other laypersons, MacLeod said.
"If you talk to coroners across this country, they would say that an overarching concern they hear in the cases where someone died is 'they didn't listen,' " MacLeod said.
The refusal to listen, or to invite questions or concerns about treatment, is a frequent element in most critical incidents publicized in Manitoba.
It was certainly a factor in the case of John Klassen, who died in January 2004. Klassen had been suffering from cardiac problems for some weeks when he was taken to the ER at Concordia Hospital with chest pains and laboured breathing. With his family at his side in a treatment room, Klassen's condition quickly deteriorated. Despite obvious signs of distress, the family was unable to get anyone to come in and check on him. His chart later showed even though he arrived at hospital by ambulance, no one came to check on his signs for nearly 45 minutes at one point during his stay.
Finally, his daughter, Leslie Worthington, confronted an ER physician who was sitting at a desk completing paperwork and asked for help. Without getting up, the physician ordered a nurse to administer morphine.
Within minutes, Klassen's condition became critical. The alarms on a heart monitor went off, and ER nurses rushed into the treatment room, where they found he had stopped breathing. He was resuscitated but due to the cumulative damage to both his heart and his brain, he would never leave hospital again. He died in January 2004.
Worthington eventually documented numerous instances where her questions went unanswered and concerns she raised were dismissed. She also found details of her father's condition were concealed.
Now a patient-safety advocate, Worthington said she is extremely doubtful about the capacity of the health-care system to change its culture from one where health professionals expect to operate without question or reproach to one where there is a more collaborate approach involving patients and their families.
"The unfortunate fact, and we've seen it again with Brian Sinclair, is that there are lots and lots of people who get ignored," Worthington said.
"I know they're trying to change things. I see the posters all over the place saying that it's safe to ask questions. I think that some doctors and nurses are willing to change. But others are certainly not."
Not all medical professionals accept there is a reluctance to listen or respond to concerns from laypersons. Sandi Mowat, a veteran ER nurse and president of the Manitoba Nurses Union, said nurses are trained early on to be advocates for their patients.
Mowat agreed there are cases where nurses and other medical professionals are perhaps unable to fully absorb input from patients and families. However, she said they are "very rare."
"Nurses are trained to go above and beyond to take care of their patients," Mowat said. "I don't think those problems are an issue, or as common as it's being made out to be."
It's important to keep in mind health care is a demanding profession.
And the front line of an emergency room is easily the most demanding place where that profession is practiced. While some of the mistaken assumptions and miscommunication can be blamed on the relentless torrent of need that flows through an ER, it does not explain why health professionals are not listening to patients and their families in less intense situations.
In other areas of the health-care system, the problem has not only been acknowledged, it has become a major focus of education.
Dr. Brian Postl, dean of the University of Manitoba School of Medicine and former chief executive officer of the Winnipeg Regional Health Authority, said he does believe there is a culture of "paranoia and entitlement" among health professionals that often leaves patients and families out of the equation.
Traditionally, health professionals were considered beyond reproach by most members of the public, Postl noted. Patients and their families rarely questioned decisions made by doctors in particular.
Postl said public attitudes started to change profoundly during the lean government years of the 1990s. During that time, doctors and nurses were used as scapegoats for rapidly rising health-care costs. The provinces responded by reducing the number of medical and nursing students, cutting fees and salaries and closing beds.
It took less than a decade for most observers to realize they had made horrible mistakes. By that time, however, Postl said the damage had been done.
What followed was a period in which physicians and nurses extracted enormous catch-up fee and wage increases and began to view the public as enemies, Postl said. This fear was compounded by patients and families who were arriving at the hospital armed with information on their medical conditions dredged from the Internet. This information helped embolden laypersons to challenge the opinions and decisions made by health professionals.
This new era of health care was not immediately embraced by traditionalists in the health professions.
"Health professionals became very skeptical of change and the public," said Postl. "Along with all the cutbacks, it grew into a sense of victimization and a sense of entitlement. Most medical schools are working now to erode that sense of entitlement and reassert the social accountability that comes with being a physician. That it's a lifetime mission to serve others."
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Compassion is a fundamental element in the education of health professionals. In faculties of nursing and medicine all over the world, the higher ideals of selflessness and dedication to the needs of the patient are very clearly spelled out.
And yet, school is not the only force that influences the type of care we receive in the health-care system.
In Canada, universal health care does not guarantee a universal culture of care. The culture can change drastically from community to community, facility to facility. The age and experience of the health professionals is a big factor in how care is provided -- as are politics and media exposure.
The end result of these different and often competing influences is conflict. Lots of conflict.
Although critical incidents often reveal conflict between health professionals, patients and families, there is tremendous friction among professionals as well. There is tension between doctors and nurses, between doctors and physician assistants or nurse practitioners. Specialists and general practitioners often butt heads, as do different types of specialists.
There are many ongoing efforts being made to defuse the conflict and break down the silos in the system. However, one of the least-known fundamental truths about health care in Canada is there is no one entity that controls all aspects of the system. As a result, there is no way to prescribe or ensure co-operation.
In Manitoba, for example, the provincial government has ultimate responsibility for the delivery of health care. The province created regional health authorities to oversee delivery. Funding goes both to individual professionals, mostly physicians, and to facilities.
However, each of the major players in the system retains a large measure of independence. Physicians, for example, are mostly self-employed, paid by the province on a fee-for-service basis. The province can request, even demand, changes in the culture of care, but does not have the authority to force change.
Physicians are self-licensing, self-governing and self-regulating through the College of Physicians and Surgeons of Manitoba. Investigations into complaints are conducted by the college, which does not allow the province to see the results. Decisions on whether to strip a physician of his or her licence is entirely up to the discretion of the college.
Other professional groups may not have the same overarching control, but they still claim independence over certain aspects of their working lives. Frequently, policies that the province, through the RHAs, may want to implement are frustrated by reluctant, even dissident, professional groups.
Consider the WRHA's campaign to encourage health providers to wash their hands. Hand-washing is a critical step in preventing the spread of infections in facilities. In 2012, the WRHA publicized audits from the city's major hospitals, revealing that an alarmingly low number of doctors, nurses and aides comply with handwashing guidelines. In some hospitals, less than 20 per cent of physicians washed their hands as required by policy.
Why did the WRHA go public? Although it was never explicitly stated in the news releases, it seems fairly clear inter-office memos and the posting of handwashing policies were not getting through to the professionals. Publicizing the audit results was more or less a last resort and one that provoked a significant negative reaction among physicians in particular.
Compliance with hand-hygiene policies has since improved significantly, but only after using publicity to underline its point.
For the overseers of the health-care system, changing the culture of care so patients and their families have a full, balanced relationship with their health-care providers is a long process.
"The system has been like this for many, many years," said Arlene Wilgosh, CEO of the Winnipeg Regional Health Authority. "You can't just flip a light switch and change things overnight. But maybe we can do it, patient by patient." Wilgosh acknowledged far too many critical incidents involve a breakdown in communication between patient and provider. And far too often, attempts by families to express concerns, or question decisions, are met with skepticism and even hostility. In many ways, health professionals are simply not prepared for patients, empowered by online information about their condition and treatment options, that challenge the traditional paternalistic culture of medicine.
The WRHA is trying to change culture in a number of ways, Wilgosh said. Posters and pamphlets distributed through Winnipeg clinics and hospitals encourage patients to ask questions any time something doesn't make sense. A new strategic plan outlines priorities that specifically compel health professionals to focus on improving the patient experience, integrate all areas of expertise in treatment plans and reach out to the public whenever possible to keep them engaged and informed.
Wilgosh said the authority is now spearheading committees in which doctors and nurses meet with patients to discuss ways to improve care. Although it may seem like a small thing, Wilgosh said the whole idea of consulting with patients on standards of care is still revolutionary.
An overarching message that needs to go out to both patients and practitioners is it's OK to ask questions, or raise concerns, at any stage of treatment, she said. Even though, it's clear that for the time being at least, there could be push-back from the system.
"I have to believe that if you make a difference for a patient once a day or even once a week, maybe you can actually change the system."