Patient Safety - Ryan Sidorchuk at SickKids

[This is based on my notes without a review of the detailed presentation so I am solely responsible for any errors. Should you see mistakes, please let me know.]

On January 16, 2008, Ryan Sidorchuk (Patient Voice Facilitation at the Winnipeg Regional Health Authority and advocate within WHO World Alliance for Patient Safety "Patients for Patient Safety" movement) spoke to about 50 SickKids staff on Patient Safety Rounds. The talk was titled Families to Improve Patient Safety, Satisfaction with Quality of Care, and Clinical Outcomes.

Ryan's 45 minute powerpoint presentation on parents as patient safety experts and communication strategies for staff was focused, useful, heartfelt with plain talk anecdotes, context and stories punctuating his slides.

Ryan remembered the call from his wife telling him that his daughter at age two had been diagnosed with cancer. Worse, and what started a new life for Ryan, was that the wrong diagnosis for cancer subjected her little body to poisonous doses of chemotherapy. As he puts it bluntly: "She spent the last month of her life in ICU with her belly open."

In addition to the mis-diagnosis, Ryan's careful research and presentation of several treatment options were ignored by hospital staff. More than one of these experimental treatments are now routine. Ryan and his wife divorced, each reminding the other of their child's horrible death. After experiencing first hand a wrong diagnosis leading to unnecessary pain, suffering and death, Ryan accepted a position as a patient safety representative in Manitoba.

On a positive note, "Ontario is leading the way with Interprofessional Practise." Much of the talk focused on elements that constitute trust in a care-family partnership. Respect, sharing uncertainty, truth telling, plain speaking, forging partnerships. There is a power dynamic seen in a very simple observation: how often do you see patients asking doctors to wash their hands on entry to their room? "Health care is only slightly harder to change than the Vatican."

I loved his reference to my childhood hero Saul Alinsky who went out into communities to help grassroots organizing. With their first parent safety committee Ryan admits that, with their mandate, "we left it open-ended and that was a mistake". Despite work, "The process to lodge complaint against a physician is a very disjointed process". Taking up matters with the Patient Rep is retroactive, the damage has already been done.

It was good to hear that Canada is a world leader on Patient Safety. [That also means we take seriously perceived gaps between rhetoric and practice.] At a conference in San Francisco in 2005 he recalled how the North Americans focused on technical and organization solutions while he was struck by the South American focus on the care process itself and how it could be humanised.

He delved into how measurement can be sufficient to promote quality. There is an old saying (Dennings?) that you can only measure 3% of what matters. Important is not to focus only on the numbers as much as the process and the dynamic. Capra, Bohm, Plsek suggest to look at patterns and not outcomes to effect change. Relationships, decisionmaking, power (who has, who has less), how manage conflict. How learn. He also differentiated simple, complicated and complex tasks and notes, from Plsek: "Healthcare is a complex adaptive system."

He differentiated Quality (the degree of excellence) from Safety (freedom from danger or risks and reduction of preventable harm) and pointed out that attempts to improve quality of life can inherently put the patient at risk. Safety is a core value, not a commodity and safety shows itself by events that do not happen.

Ryan also referred to Deborah B Gardiner's Ten Lessons in Collaboration from Online Journal of Issues in Nursing (January/2005). (They are so interesting I reproduced, from the appendix, the Table 1 Summary of Collaboration Lessons below).

"Those that will get along will usually get out alive" and, later: "We all know the patient better than the care-givers." An issue grappled with by safety advocates is when does safety trump privacy?

Ryan then showed a film with several parents speaking about tragic deaths due to medical error. Each of them described what their kids went through. "As parents, we see medical error from start to finish. Few others will." These voices he reminded us are not only sad stories but powerful reminders and powerful learning opportunities. For Ryan it was as simple as: "Noone told me jaundice can cause brain damage with cerebral palsy". For an Irish mom it was that "Doctors dont realize that whey they treat us poorly, they create another patient. We go away sick." Another talked of being blacklisted by the top pediatrician in her state from getting medical coverage.

Others touched on a very interesting reality. When a child dies in ambiguous circumstances, there is a tension between hospital staff being transparent and empathetic and growing concern about liability. Most parents natural inclination is to be satisfied with genuine efforts at remedy that protect other patients. Parents described staff responses in the immediate aftermath as heartfelt, with apologies and offers to remedy. Where the discussion about specific remedies break down and parent's still persist, hospitals can draw up the wagons and the initial empathetic nurse or administrator is replaced by hospital lawyers facing off against parent's lawyer in a no holds barred legal struggle.

I have come to realize that patient safety work is a key hubs of family centred participation. Working within their own organization, associated with the World Health Organization, patient safety committees are impacting hospitals, providing commitment, protocals and pressure from outside the hospital. They meet with ethicists, geneticists and themselves become expert on patient processes. Often they develop this expertise because they are shut out from any remedy at the hospital where the tragedy happened.