Given the current climate, with COVID-19 continuing to dominate the news headlines, we wanted to take a moment to lighten the mood by sharing a background story around how and why Plan Well Guide began years ago. Things sure have changed in half a decade, we’ve gone from having a few conversations with people about advance medical care planning to creating an accessible online tool, to performing an RCT and publishing research articles about how beneficial it is, to now helping people prepare and plan for serious illness amid the coronavirus pandemic. What started out as something small has blossomed into something larger which we’re so proud of, as it has allowed us the opportunity to truly help people prepare for things most important to them.
It all started four years ago with my mother-in-law (center of photo) who was 92 at the time. She had lived a good life and was ready to ‘exit’ when the opportunity came knocking.
Her family doctor, Dr. Alice Bailey at the Bigelow Fowler Clinic in Lethbridge asked her about her Goals of Care Designation (GCD), which is the official form used by Alberta Health Services to denote the medical plan in the event of serious illness. At the time, I was developing new tools to help people clarify their authentic values, or what’s important to them when they get seriously ill, so I felt it was the right time to test it out on my mother-in-law. After this we sat together and watched a CPR video decision-aid I had created earlier to help explain everything. Once this was all finished we discussed things in more detail and together came to the conclusion that she would be bested suited for a “C1” designation (comfort measures only). I wrote a brief consult letter to Dr. Bailey explaining the process I had gone through with my mother-in-law which resulted in this recommendation.
I thought that was the end of my interaction with Dr. Bailey. However, a few weeks later, I got a request from Dr. Bailey via my mother-in-law. She was asking if I would consider going through this process for her other older patients. To make a long story short, I subsequently met with Dr. Bailey and discussed opening a ‘Goals of Care Designation’ Clinic at Bigelow Fowler, where I would see patients she referred to me in consultation to help them prepare for a subsequent meeting with her, in which she finalized the Goals of Care Designation. My wife Becky was functioning as my research assistant and sounding board at the time, so the two of us went in together and began the process of helping people prepare for this decisional encounter with Dr. Bailey. After several clinics, we realized we were often having the same conversation repeatedly. People required explanation and discussion around the same points multiple times. The re-occurring conversations centered around the following themes:
- Understanding the difference in planning for terminal illness vs. serious illness:
- Patients were having difficulty discriminating between planning for terminal care compared to planning for medical care when seriously ill. In our observations, the majority of patients just wanted to be kept comfortable when it was certain they were dying (condition of certainty). Our concern was to the extent that these patients misunderstood the context of the question about serious illness, they could be expressing a treatment preference that would result in their certain death when they could have recovered with simple curative treatments or intensive care, when appropriate.
- Difficulty informing future medical decisions:
- Patients had difficulty expressing their values, or what was important to them, in a way that informed future medical decisions.
- Understanding the different types of medical care:
- Majority of people did not really understand the differences between ICU care, medical care and comfort care. Despite this, they felt like the doctors were putting decisional responsibility on them saying things like, “What do you want when it comes to the end of your life?”
- Difficulty communicating preferences:
- Patients needed help communicating back to Dr. Bailey the ‘outcome’ of their interactions with my wife and I; which is how the concept of a “Dear Doctor” letter came into practice.
Through these observations and encounters we created the first version of Plan Well Guide, which was based around bringing to life the following five key planning features:
- Discriminates between planning for terminal care vs. planning for serious illness
- Explains how we make medical decisions under conditions of uncertainty
- Utilizes a ‘constrained’ values clarification tool where respondents have to pick between competing values
- Uses ‘Grids’ to transparently connect stated values to respondent preferences for medical treatments during serious illness
- Provides a ‘first in class’ decision aid on the different levels of care, with explanations about the difference between ICU, medical and comfort care, so participants understand the risks, benefits and outcomes of the type of treatments they are preferring
This first version of Plan Well Guide was a PowerPoint presentation in which we further refined the key messages and mocked up accompanying visuals. Eventually, we finalized the presentation and recorded it so we could have a standardized approach to helping people figure out what level of care they thought was ‘right for them.’
As a researcher, my focus is around designing and conducting randomized clinical trials which I quickly realized would lend itself well to Plan Well Guide; we had a golden opportunity to demonstrate the real value of Plan Well Guide. Working alongside Dr. Bailey and other family doctors in Lethbridge we conducted the first ever reported randomized trial in non-academic primary care settings of an advance care planning decision aid. The results were recently published in the CMAJ Open. The results demonstrated that Plan Well Guide improves decisional quality, patient and physician satisfaction, and reduces time physicians spend on their interactions with patients.
To read the full article visit the e-publication, here: https://bit.ly/2W4nzLf
Below is a snapshot of the infographic we created, to visually summarize the results of the RCT. To view the full Plan Well Guide infographic, check it out here!
This successful achievement does not mark the end of the journey as I am confident there will be many more evaluations of Plan Well Guide in the future. However, it does mark a significant milestone and I want to take a moment to thank my family; my mother-in-law who was the source of inspiration, along with my life partner, Becky, whose insights and companionship were so valuable. I would also like to thank Dr. Alice Bailey who planted the seed of the idea and helped bring it all to life. Lastly, a special thank you goes out to all the patients who have contributed to our learnings that lead us to create this unique and valuable tool that is helping people around the world prepare for serious illness. Our focus right now is that we continue to offer support to individuals in their planning journey, as we realize now more than ever before, during this COVID-19 pandemic how important it is to prepare and plan for serious illness.