Imagine being told you have a 50-50 chance of getting the same irreparable disease that distressed and deteriorated your father for the last few years of his life. Do you want to know if you carry the gene for this disease? If so, when would you want to know?
Shared Decision Making, a new half-day workshop held before this weekend's Medicine X, introduced a decision-making framework to help patients, caregivers, providers, and loved ones negotiate the complexity of choice, especially when our decisions affect those around us.
To launch the discussion, session facilitators Tyler Ludlow, MBA, a senior decision scientist at Eli Lilly and Company, and Katherine Rosback, president of Katherine Rosback Enterprises, Inc., asked participants, "What poignant medical decision have you faced? What made it tough?"
Participant answers were paired with a scenario that explored the practical and emotional decision-making processes around the choice to get a genetic test. Consider, for instance, the potential burden and impact of this knowledge on you and your family.
Rooted in decision science, Tyler and Katherine walked participants through the framework that empowers us to progress beyond a paralyzing yes-no cycle, which doesn't account for the many implications of our health-care decisions. The approach of "structured thinking for making choices" is broken down into structural components, process steps, and quality elements.
The first step of the process is framing and structuring — "all of the process stuff that happens before the analysis," as described by Tyler. You organize variables and considerations into three buckets (some things fitting into more than one):
- Decisions: the alternatives we choose that are under our control
- Uncertainties: ambiguity and outcomes that may be out of our control
- Values: the constraints and criteria, including conflicting or competing values, and consideration for the impact of a decision on family
Step two, afforded by the framework, is a new way of approaching the decision. The outcome from our exercise: breaking down a single daunting choice to take a genetic test into more accessible conversations and incremental decisions into a sort of decision tree.
The remaining step is to evaluate options based on quality values and arrive at a commitment to follow through on your choices. Katherine explained, "It's not (about) the decision per se, but what's important to that person."
The second half of the session then took the conversation into the doctor's office to address how physicians and patients may constructively engage in shared decision making. Looking around the room, I saw faces sour as they listened to audio of a discordant conversation between a patient tentative about taking medication and a doctor seemingly insistent that she does so. I've been in this situation, and it was apparent that many participants had as well.
The friction related to the framework: "She's (the patient) talking values; he's (the doctor) talking choices — the decisions are confounded with the values."
The dialogue around shared decision making persisted formally for an hour over time, and continued into the hallways as participants left to catch a final shuttle back across the campus. The conversation will certainly continue.
Previously: Medicine X, the academic conference where "everyone is included," returns and Exploring the science of decision making
Photo by Wendy Moltrup; photo in thumbnail courtesy of Stanford Medicine X