There were times in Lindsay’s treatment where she felt she couldn’t always make herself understood. “The act of speaking up for myself during treatment was ongoing and exhausting.” Lindsay, who works as a lawyer, says that although she’s used to engaging in difficult conversations, feels a certain dexterity in the English language, and has family who can help her navigate the medical system, she still struggled at times. “I can’t imagine how disempowering it would be to someone who doesn’t share the same educational, vocational, or linguistic privileges that I have,” says Lindsay.

After meeting with the Patient Family Advisory Council (PFAC) at Sunnybrook, Lindsay ended up connecting with Agnes Ryzynski, Director of the Sunnybrook Canadian Simulation Centre and at the time, Master’s in Translational Research Candidate at the University of Toronto.

“As part of a quality improvement initiative and for my master’s thesis, we were developing a new research project to improve the patient experience in the Pre-Anesthesia Clinic at Sunnybrook, says Agnes. The Pre-Anesthesia Clinic provides surgery patients with a pre-anesthesia assessment to determine their needs for before, during and after surgery.

“Our initial needs assessment, indicated some patients didn’t fully understand the value or function of the clinic, and some felt unprepared due to not knowing what to expect” says Agnes. The team wanted to better understand what patients needed, what they were lacking and how they could best provide that. With those questions, the patient-centred approach was born and Lindsay was brought on to serve as the patient advisor throughout the team’s research.

Agnes worked alongside fellow master’s students Raja Ravi and Andrew Wan on the project. Members of the project’s Advisory Team at Sunnybrook included Drs. Ed Etchells, Lesley Gotlib Conn and Guna Budrevics.

Agnes described Lindsay’s role on the team as essential. As the group worked to develop a series of patient questionnaires and interviews to conduct their research, Lindsay provided feedback and insight into the patient experience at every step of the way. “I was able to fill in gaps and provide insights that a researcher might not have been able to because of what I’d learned through lived experience,” says Lindsay.

Agnes attributes much of the project’s success to Lindsay. “With the help of Lindsay, we were able to interview almost everyone we approached. Her feedback on our questions and interview style also enabled us to draw lots of richness from each interview in a very short amount of time.”

For Lindsay, the benefits were personal and professional. “It gave me renewed confidence in Sunnybrook. By and large I was overwhelmed by the high quality of care I received there. Seeing first-hand how the patient experience is centred in assessing and refining how Sunnybrook delivers care was really heartening. Being able to contribute to that felt like a significant bright side to a medical crisis that was a really dark experience for me. I think having a voice in shaping [the] experience allows patients to maintain more of their humanity as they go through their treatment. It shifts their experience from something that is done to them to something that they have a role in creating.”

Lindsay, who works in refugee law, also says the experience gave her a renewed perspective for how she interacts with her own clients. “I’m often helping clients navigate a very specialized and confusing system that also has serious life-altering impacts. Seeing the way that Sunnybrook integrates patient feedback into its operational development has really shaped the way that I do that in my legal practice.”

Agnes, who successfully defended her master’s thesis in June, can’t thank Lindsay enough for her contributions. “The first part of our project was understanding the problem through research and our next step is to connect with staff and patients to implement design changes in the PAC experience. All the foundational work we have done with Lindsay will make this next step that much more successful.”

The post Behind the Research: Improving the pre-anesthesia clinic with a patient-centred approach appeared first on Your Health Matters.

The Answer: In this post, patient Emily Nicholas, who is a Patients’ Association of Canada board member, is one of the experts providing advice on how to navigate the health care system for pain management. As a patient, she knows this story because she lived it: she had a hip replacement in July 2010 at age 28 and was prescribed tramadol – similar to a narcotic – by an orthopaedic resident. It didn’t work very well and by hour three, the next pill couldn’t come soon enough. She was also placed on morphine for breakthrough pain, which made her so nauseous, she had to take gravol to help alleviate it. Ms. Nicholas was told to switch to ibuprofen when she felt ready but no one told her what ready felt like, leaving her to figure this out on her own.

“They can only give you a rough estimate of the length of time you will need the medication,” she said in an interview. “The amount of pain and suffering that came after was more intense and persisted for longer than I had expected.”

She points to information sheets from the pharmacy she was provided. For six, typed pages, in words that few would describe as patient friendly, the drug’s uses and precautions were explained.

“The patient often has a lot of insight into their condition, but is kept out of the loop,” said Ms. Nicholas, who has an interest in patient engagement and health policy design. “Just putting information out there, doesn’t mean you are communicating it.”

While the information sheets do note that tramadol can cause withdrawal reactions, especially when used regularly for a long time or in high doses, they suggest patients see a doctor to reduce the dose gradually. Now that Ms. Nicholas was no longer seeing the orthopaedic resident, what doctor was going to help her get off of the medication, a month after taking it?

Ms. Nicholas went cold turkey in late August 2010, dropping the tramadol. Within days, she felt like she had the flu and had this odd sensation of a shock-like pain in the back of her neck. She didn’t make the connection straight away ­ that she might be experiencing withdrawal symptoms.

“I thought I was getting the flu,” said Ms. Nicholas, now 30. “I was anxious and shaky, with the feeling of shocks up my head.”

Realizing she might be experiencing withdrawal, she went back on the pills, reducing their dose, until she was able to get off of them for good.

Ms. Nicholas wishes she had been given a plan for pain relief and weaning from the pain drugs. She also wished she was provided alternatives, including the shot bean bags, body pillows and deep breathing exercises she later discovered on her own.

Anesthesiologist Chris Idestrup, director of the Acute Pain Service at Sunnybrook, said patients are typically provided a bundled approach to pain management in a hospital setting consisting of a combination of acetaminophen, anti-inflammatory medication, plus nerve blocks and possibly opioids. When patients are ready to leave hospital, they typically go to one drug – be it tramadol, another drug that is a combination of oxycodone and acetaminophen or acetaminophen. He described the medication Ms. Nicholas was on as “middle of the road,” in regard to its strength, and one that is prescribed if patients “are not able to tolerate a stronger opioid.”

He indicated that post-surgical patients are typically started on stronger medicine, such as morphine, which would be reduced to a weaker opioid if it were too strong. He recommends patients ask their doctor if there are other medications they can take in addition: by throwing an anti-inflammatory into the mix – another drug that is a mixture of oxycodone and acetaminophen – that would help reduce the need for other pain medication and decrease the side effects of one drug.

“Realistically, after surgery, patients might need to use opioids to control pain for two or three weeks, some require it for longer,” Dr. Idestrup said in an interview.

Oftentimes, he says, patients can wean themselves off the drug by tapering it by about 20 per cent per day. Sometimes it is as simple as dropping one tablet each day so that by day 12, the patient is not taking any medication.

“Instead of taking two in the morning, take one in the morning,” he said. “Drop a pill each day and see how you deal with that.”

He recommends patients see their family physician, a week or two after being home, with their pain medication in hand. If still on the maximum dose, discuss whether they should be set up with a “weaning protocol” to get off of the medication.

“I wish I had known that it was okay to try to get your physician on the phone,” she adds, “And to ask for what you need and tell them what you want.”

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