Deborah Prowse and Steve Long might seem unlikely partners in the campaign to promote patient safety across Canada.
Prowse is the daughter of one of two patients who died in 2004 when a pharmacy at Calgary's Foothills Hospital mistakenly prepared dialysis solutions with potassium chloride instead of sodium chloride. Long was the director in charge of that pharmacy at the time.
It took two years before these two secondary victims of that great tragedy had a chance to meet in a healing face-to-face encounter, expressing sorrow, sharing grief and sowing the seeds for a remarkable advocacy alliance. Prowse and Long now appear together regularly, speaking with great candour about their shared painful experience.
The death of Prowse's 83-year-old mother Kathleen due to that medication error in March 2004 occurred at the end of a troubled 13 months of surgeries and setbacks that had already left the Prowse family highly frustrated over the state of her medical care. The shock of their mother's unexpected death left the family reeling, a trauma that only worsened amid the media firestorm that followed.
"My mom died as a result of a series of adverse events that led up to the ultimate event that took her life," Prowse says. "She'd had two medical stays in hospital and on both occasions there were things that did not go well."
For Long, the lasting memory is of a routine day gone horribly awry.
"The incident with Deb's mother occurred on a Friday afternoon. It was the same as any other Friday only the pharmacist that was working in the critical care unit came downstairs and said 'we've had a mix-up with the dialysate solution.' They'd taken it to the blood gas lab and they'd determined that there was potassium chloride in it."
Long and his team went back to their manufacturing records, checked the lot number of the bottle and discovered that batch of dialysis solution had in fact been mistakenly prepared with potassium chloride. At the time the potassium and sodium chloride were purchased from the same manufacturer, were stocked along the same row of shelves, and came in cases and containers similar in appearance. Even the colour and printing on the labels looked the same, Long says.
Later that evening, Long was helping coach his daughter's basketball team when his phone rang. His halting voice as he recalls that moment bears testament to painful memories he still carries with him today.
"The call was from the physician that was working in the ICU and he essentially stated 'you've killed my patient; what are you going to do about it and how are you going to ensure it never happens again?'
"I had been the director of pharmacy in Calgary for almost 20 years at that point. Never had I dealt directly with an error or an incident of this magnitude. We had recently opened a central pharmacy. We had designed it. We were aware of the quality and safety movement and how we could change processes to reduce the risk of error and yet here in this new facility that was designed to make patients safe we had done the ultimate damage. We had killed two patients."
The hospital and regional health authority implemented several investigations and qualitative reviews following the deaths, under the glare of intense public and political scrutiny. Over time the health region dedicated staff and resources to implement $7 million worth of patient safety initiatives. But in those early days, amid all that rigorous institutional self-examination, there was little support for the staff and family closest to the adverse event.
"Essentially we were just trying to cope with all the things that were going on in that immediate period, trying to understand ourselves what happened," Long says.
"Trying to keep the operation going because we still had 2,500 patients in hospital beds that required our due care and attention and expertise to prepare the products that they needed to make them well again. And yet we're doing it in this environment of distrust where everything that we prepared, everything we produced, was questioned, was challenged. Whereas before none of that had gone on.
"It was like being under siege. You didn't know what was going to happen, you didn't know how you were going to be dealt with. As a pharmacist with a license I didn't know whether I'd be able to practice after they'd determined what had gone on. So fear, disappointment, humiliation, failure — all of those thoughts were running through my mind as we were going through that immediate period."
Three technicians and a pharmacy assistant had been involved in the production of the fatal dialysis solution. Initially they continued to work at the hospital but as review followed review they were eventually sent home without pay, isolating them totally from their organization and any emotional support they might have found there, Long says.
For her part, Prowse came away from the entire experience with an iron determination to advance the voice and participation of patients and families in safety efforts across the country. Drawing on her mom's hospital odyssey, as well as her professional background and training in social work and law, Prowse became one of the a founding members of the Calgary Health Region's patient-family safety council and has since worked with Alberta Health Quality Council, Patients for Patients Safety Canada and many other such advocacy groups, including the World Health Organization's Alliance for Patient Safety.
"Patients and family members have to trust that their care is going to be of high quality and safe and when things go wrong, historically, there hasn't always been transparency and openness about admitting that," Prowse says. "And that is an affront to a trusting relationship.
"So it's very important that when things go wrong that there is disclosure of what happened. And the three parts of disclosure are the acknowledgement that something happened, the apology and then the action ensure that it doesn't happen again. Patients, I think, for the most part believe that healthcare providers come to work with good intentions and the desire to do well and to care for patients. Sometimes that doesn't go well. I think the greatest fear is that it will be covered up if something does go wrong."
Prowse and Long spoke about their experiences in a series of sessions targeting leaders in the Calgary Health Region during the roll-out of the new patient safety procedures, including new policies governing disclosure after harm, reporting, informing the public and a just and trusting culture within health facilities.
"That marked a huge change for patient safety in the province of Alberta and because of the national highlight that these events got it also started to change the conversation nationally about disclosure," Prowse points out.
"Now I think disclosure is much more thoughtfully done. My concern is that it still does not involve the people closest involved in all of the situations that it should. And I think that that is a big feature of healing for both the patients and the providers, is that we be brought together and allowed to go through those early stages of recovery close to the events, as soon as both parties are ready to do that. I think that's important."
That point is not lost on Long, who suffered a severe emotional toll following the deaths, as did his pharmacy staff involved.
"Pharmacy often is quoted in the literature as the invisible ingredient because it just magically appears up out of the basement, the drugs and the preparations, and most of the time it's correct … people get better. After the error and after credibility was lost, the one piece I never had closure on was we never had a chance to say we were sorry," Long says, struggling to maintain his composure.
"We had caused this great harm… We knew we'd done it and we didn't feel very good about it... "
If he has any message to health care providers who find themselves involved in adverse incidents, it's just to hang in there and get through it, Long says.
"Firstly, if you haven't had a medication error or if you haven't caused harm it's not because you're an exceptional provider; you've been lucky," he says. "Secondly, one of my biggest regrets is that I don't know that I checked in enough on my staff to see how they were doing to ensure they got the support they needed. And the third thing I'd say is make sure you take care of yourself. Take clues from family, from co-workers and others and seek help. I waited far too long before I sought professional help."
Prowse thinks her mother would be pleased by her advocacy work and the positive changes her death has triggered in patient safety. One of the things that has kept her going over the past 10 years is the number of health care providers who've come up to her after a speaking engagement and said how much her story has touched them, Prowse says.
"There's a saying that I think pertains to both of us," Prowse says, looking over at Long. "It's from Maya Angelou, something to the effect that over time they may forget the words you used but they will never forget the way they made you feel."