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On the surface, this is a story about breathing; a function that the vast majority of us can do without any thought but would drastically impact our lives if we were robbed of it.
But looking a little deeper, it's also a story about trust and courage – not only on the part of a care team that came together to help a patient breathe on her own once again, but also because of that patient's willingness to let them do so.
"I thought it would be very cool to be a trail blazer," says Karen Witt, 58, as she recalls her decision to become the third patient at Toronto Western Hospital (TW) implanted with a diaphragmatic pacemaker – but the first to go through the therapy to help her use it, essentially mapping the process that will help future patients adapt to the device.
Karen had been in the TW Medical Surgical/Neuroscience Intensive Care Unit (MSNICU) for a month, hooked up to a ventilator after an arteriovenous malformation (AVM) on her spinal cord bled, leaving her quadriplegic.
Unable to breathe on her own, Karen faced the possibility of needing a ventilator, and all the healthcare support that goes with it, for the rest of her life.
But Dr. Jeff Singh, Medical Director of the MSNICU, knew of a procedure that could change all that.
In 2009, TW provided the venue and surgical expertise for the
first implant of a diaphragmatic pacemaker (pacer) in Eastern Canada. The procedure involves making small incisions in the abdomen to implant electrodes that stimulate the diaphragm to contract so a patient will breathe on her own.
The ability to breathe independently is lost in different ways: in patients with severe spinal cord injuries, the brain can no longer send signals to the diaphragm to contract; with conditions such as central hypoventilation syndrome (CHS), a patient's breathing can suddenly stop during sleep. Both cases can be relieved by a pacer which contracts the diaphragm so air can be drawn into the lungs.
'I was desperate to feel normal again'
"Karen was an ideal candidate for the procedure and we wanted to get her off the ventilator as soon as safely possible," says Dr. Singh, the physician in charge of Karen's care after she received the pacer.
"When a patient is on a ventilator, it does all the work of breathing, so the breathing muscles get weak quickly. We wanted to start pacing Karen's diaphragm early so she wouldn't lose a lot of strength and then transition off the ventilator relatively quickly."
Although the team had a good idea of how to transition a patient from a ventilator to a pacer, they didn't yet have much experience doing it – the patient who'd received the procedure as a test case in 2009 had gone to a long-term ventilation facility as she adapted to her pacer.
By 2018, TW and the Krembil Brain Institute, as a leader in care for spinal cord injury and disease, had obtained funding from the Ministry of Health and Long-Term Care (MOHLTC) to offer the procedure to these patients. What they needed was a patient willing to work with TW's capable respiratory expertise and resources to chart a path for this therapy.
Karen was willing to give it a try.
"I was desperate to feel normal again," says Karen, who'd had a tracheostomy – a routine opening made in her windpipe – to accommodate her breathing on the ventilator.
"Although I was told that there weren't many patients who'd gotten a pacer, I wanted to try to get off the ventilator and breathe on my own."
Karen had the pacer implanted last Feb. 28 by Dr. Allan Okrainec, head of UHN's Division of General Surgery, who also performed the surgery back in 2009.
About two hours later, electrodes had been implanted at the points in Karen's diaphragm to stimulate the maximum contraction.
But that was half the journey as breathing with a pacer isn't as simple as flipping a switch.
Enter respiratory therapists (RT) Jennifer LeBlanc and Sean Marshall who worked with Dr. Singh on a therapy plan and engaged the care team to safely transition Karen from ventilator to pacer.
"We were really motivated to develop these skills because the difference in quality of life for patients is night and day," explains Jennifer. "When ventilated, patients can't talk or eat, and it's a whole process if they want to go outside."
"Even if they are stable enough to go home, it's almost impossible to transition out of the hospital as patients need at least five people trained and able to provide ventilator care around the clock," she adds. "Most patients on ventilators end up staying in an ICU or similar environment that has the monitoring and nursing needed for that level of care."
The team's starting point was a spinal cord injury (SCI) weaning package Dr. Singh had developed in collaboration with respiratory therapists for patients without a pacer, but who had a tracheostomy and was able to transition off a ventilator.
The hope was they could get Karen to breathe well enough on the pacer to at least leave the ICU.
With this framework, the team worked with Karen daily to lower her ventilator settings or turn it off completely and monitor her as the pacer helped her breathe. As her breathing muscles got stronger, these intervals got progressively longer.
The care team discussed her progress at each session and considered how carefully or slowly they should lengthen the intervals.
"It was hard to breathe at first but the pacemaker made my diaphragm stronger," says Karen. "It felt like I was doing exercise.
"Many staff also came by during these sessions as we were all learning about the pacer together."
Next phase made everyone anxious
Three weeks after surgery, Karen was able to breathe for 24 hours straight relying only on the pacer. Though her progress was encouraging, the care team kept Karen on the ventilator overnight as a precaution, making sure the pacer was working well.
With the first hurdle behind them, the next was transitioning Karen from the MSNICU to an in-patient unit – which caused some anxiety for everyone involved. Though she was doing well, the pacer was a new technology for staff and an in-patient unit meant Karen was leaving the one nurse to one patient ratio standard in the ICU.
Because of her quadriplegia, the team needed to work through any possible risks.
"We had multiple meetings to address everyone's concerns," Sean says. "Nurses from the unit on 5A Fell came to the ICU to meet Karen and familiarize themselves with the pacer.
"We worked through different scenarios in our Safety Huddles and went over contingency plans. It helped to bring the team closer together."
After several weeks of Karen pacing continuously, the care team was confident of her progress and transferred her to the in-patient unit on 5A Fell in May. There, she continued to improve and they considered taking her off the pacer completely.
Using the same framework to get her on the pacer but in reverse, turning the pacer off for a period of time until the intervals got long enough for the pacer to be turned off completely.
"This involved a lot of cautious clinical judgement and trial and error because we had no precedent to base it on," says Sean.
Karen was 'the ideal patient'
It also helped to have such a willing and optimistic patient.
"Karen made the process easier and was the ideal patient," Jennifer says. "She had low anxiety, always advocated for herself and pushed to move to the next step.
"Any concerns she had she'd express, we'd talk her through it. We really worked through this together."
As a result, Karen had no issues while on the in-patient unit and the pacer has been turned off since August 12.
"I feel very blessed," she says.
The ripple effect of this partnership reaches far. The TW RTs continue to build on their learnings and shared the experience with their colleagues at Toronto Rehab's Lyndhurst site – where Karen has since transferred – as well as other hospitals in Toronto in order to establish strong support for patients who get pacers.
"I'm proud that we're on the cutting edge and can now offer this to patients who didn't have access to this procedure," Jennifer says.