Mastodon Moving From Research to Implementation to Research in Palliative Care, Part 1 ~ Pallimed

Monday, September 25, 2017

Moving From Research to Implementation to Research in Palliative Care, Part 1

by Christian Sinclair

In 2003, I began my hospice and palliative medicine (HPM) fellowship in Winston-Salem, NC. I was a solo fellow in a new program, and as luck would have it, I had loads of time to dedicate myself to learning. Since my wife, Kelly, was beginning her pediatric emergency medicine fellowship in Kansas City at the same time, I only had my dog and my fellowship to worry about. I always enjoyed reading articles and imagined how it would apply in my own practice. But when it came down to it, I was never really able to implement much of what I was reading, let alone have the numbers to benchmark against the research.

Fast forward to Spring of 2016. With years of experience across multiple care settings, I finally had an opportunity to implement research tools into everyday clinical practice by using the Edmonton Symptom Assessment Scale (ESAS) in each visit and tracking how patients do over time. I had used the ESAS in a few visits over the years, but could never seem to use it reliably at every visit with every patient.

At KU, we have been using a modified ESAS (with Mild, Moderate Severe) on the inpatient side for a long time, but never the numbers-based ESAS that would be most applicable to research. In practice, my symptom assessments were always driven more by the narrative of the patient, winding indirectly as the patient told their story. I never pressed hard on getting the mild, moderate, severe directly from the patients mouth, but would interpret their story into the scale and document it. Eventually I would get a comprehensive view of symptoms and make a good clinical plan, but I was never going to be able to use that to demonstrate quality nor publish research.

Even admitting this publicly, has taken me some time to do. I figured that everybody was already getting patient-reported outcomes. Frankly, it feels kind of embarrassing to admit. But as I talked to more people, I realized that other HPM clinicians were also not able to apply tools like the ESAS universally. Sure they might get few numbers or severity scores, but to do that at EVERY visit and for EVERY patient, that takes more than just clinician will. It takes a system-based approach to change. And that is not easy.

So in 2016, I talked with the outpatient nurse navigators, Amy and Wendy, and I asked them to help make sure that EVERY patient at EVERY visit was getting an ESAS form and that we were documenting it in the chart. They were both game, which I look back on and count my blessings. In all my previous attempts, when moving from research to implementation that culture change step always worked for a week or two and then regressed to the baseline. Someone gets too busy, or behind and then the standardized thing you are trying to do feels like 'extra work' for no good reason.

To help ensure our success, we made it a focus to talk about the ESAS at the beginning of the clinic day, in between patients and a debrief at the end of clinic. At first, our language was probably inelegant as we introduced the ESAS concept. When people rebelled against 'one more form' or 'hating those damn numbers', we initially backed down, but we persisted and it paid off, because we refined our language and we discovered how to overcome the hesitation of our patients. We helped our patients see the ESAS numbers as a demonstration of their voice and experience. After one interesting conversation with a patient, we began to call these numbers 'our palliative care labs' because 'no blood draw is going to tell me that your nausea was awful last night.'

It took a while but we also recognized that just 'getting the numbers' was not enough. Going back  to get these numbers after the visit was over and the plan was made was showing the patients that the symptoms were not necessarily driving the plan. So we adjusted and worked to make sure the ESAS was one of the first things we discussed with the patient, which in turn became the spine of the visit and therefore drove the plan.

Once we began to get consecutive visits with ESAS scores, we were able to show the patients their numbers over time. The feedback was tremendous in demonstrating that we cared about their symptom experience, and as we have become more facile in applying the ESAS we have noticed the objections fall greatly.

And now we have lots of ESAS numbers over lots of visits, but (and this is a BIG BUT) they were all buried in the narrative/free text part of the chart. So we needed to find a way to get this data exported from the Electronic Health Record. I'll share how we did that in part two tomorrow, because when I tried to figure out how to accomplish that, there was no guidance online I found helpful. My hope is that these stories of my clinical transformation from research wanna-be to providing the founding blocks of research and quality improvement may help someone else see that it is possible.

If you want to join in the conversation, this Wednesday we will be hosting the September #hpm Tweet Chat on the topic of "Moving from Research to Implementation to Research in HPM." #hpm Tweet Chats are held on the last Wednesday of the month at 9p ET/6p PT. Sign up on to be updated of the monthly topic.

Christian Sinclair, MD, FAAHPM is immediate past president of AAHPM, editor-in-chief of Pallimed and a palliative care doctor at the University of Kansas Health System. If he isn't reading about HPM research, you can find him reading board game rules.

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