Episode 38: Am I making the right decision?

In this episode, we talk with Dr. Glyn Elwyn and Danielle Schubbe about the ethical imperative of including patients in the decision-making process. They discuss how patient goals inform treatment decisions and the challenge of making choices for a “future self” with the lived experiences and preferences of today. Glyn and Danielle talk about this process for early stage breast cancer and some of the tools they’ve created to help both clinicians and patients navigate shared decision-making, including the three-talk model.

This episode was supported by the Patient Centered Outcomes Research Institute (PCORI) and features these PCORI studies by Dr. Glyn Elwyn & Danielle Schubbe - Study 1 and Study 2.

And check out our Podcast Club response to this episode in the video below featuring Pink Fund.

Pink Fund breast cancer financial help

Podcast Club featuring Pink Fund

What is a Podcast Club? Podcast clubs are a way for our community to engage in and respond to podcast episodes that matter to them. This Podcast Club features Pink Fund co-founder & CEO, Molly MacDonald, who created the organization after her own diagnosis with breast cancer.

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About our guests

Dr. Glyn Elwyn

Glyn Elwyn BA MD MSc PhD FRCGP is a clinician, researcher, and innovator. He is a tenured professor at The Dartmouth Institute for Health Policy and Clinical Practice, USA, and at the Scientific Institute for Quality of Healthcare, Radboud University Nijmegen Medical Center, Netherlands. He has Visiting Professor positions at University College London, UK, and at the University of Lausanne in Switzerland. After reading the humanities he qualified in medicine, completed a Masters in Education, and obtained his doctorate at Radboud University, Nijmegen, Netherlands, with Professor Richard Grol. Glyn Elwyn studies coproduction, shared decision making, and the application of machine learning to digital recordings of clinical encounters.

Danielle Schubbe

Danielle Schubbe joined the Coproduction Laboratory in September 2017. She is an external PhD student of Health Services Research at Radboudumc in Nijmegen, Netherlands. She has worked on multiple PCORI-funded studies about shared decision making and the implementation of shared decision making in diverse clinical contexts. She is involved and leads grant development processes, project management, and dissemination. Danielle’s research interests are patient and community engagement, implementation and sustainability of shared decision making, using pictures and visual elements in health communication, and reducing health disparities.

Watch the video of our episode on YouTube

  • 19 minutes:

    On integrating patient preference with clinical guidelines.

    I think most discerning clinicians understand how to work within guidelines, and I think most expert clinicians would say I bring in patient preference as well as know what the rules are saying or what the guidelines are saying. So they would integrate that rather than be rigid about guidelines.

  • 31 minutes:

    On the challenge of making a decision for your future self.

    Your decision today about that future is gonna be misinformed because you've never experienced that future yourself. And so you don't know how well you could adapt to a future that looks different. And that's one of the big, big challenges of decision making is to try and predict how well or poorly you will adapt. And that's irresolvable. We cannot predict you in three years’ time. How will you feel? We can only ask you to do your best to predict how you feel in the future… and you will be wrong.

  • 49 minutes:

    Using the three-talk method of decision making.

    Then there's the option talk. That's when you present if there is more than one option for the patient to consider for their treatment. That's when you go over all the nitty gritty of the pros and cons of the two surgical treatment options, in our case for early stage breast cancer,  in a way that is hopefully not really overwhelming for the patient. That's why we use the option grid. It's really plain language. We have a version that's mostly picture-based using something that is very patient-friendly and usable to facilitate that shared decision-making conversation, which hopefully gets the patient to the point of having more of a decision talk.

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