Valuing Outcomes—a CHDS Staff Member Story

Headshot of Cassidy Bargell

FAM-NET research assistant Cassidy Bargell faced quality of life decision making in real-time last fall when confronted with a serious illness. As described recently in a Harvard Gazette feature article Cass experienced an acute case of severe ulcerative colitis, and after weeks of unsuccessful medical intervention had a colectomy (colon removal) to eliminate her symptoms. Living now with an ostomy, the Harvard undergraduate has returned to her studies, her research position, and her cherished sport of rugby, and is content with her path.

Reflecting on her disease course, Cass faced quality of life considerations not commonly encountered by a young person, much less an elite-level athlete. Her options weighed an immediate resolution involving invasive and permanent surgical intervention against a longer-term continuation of attempts to manage her condition medically, with an uncertain outcome and possible surgery at a later point in time. The surgical intervention would leave her with an ostomy (with a possible reconstruction of a “j pouch”) and the associated management whereas the medical intervention would involve a life-long chance of “flares” (recurrences) requiring medical intervention and potential hospitalization. Often used as an exemplar of an insurmountable quality of life “decrement,” the ostomy was a psychological obstacle to the surgery option, whereas the uncertainty of the timing and frequency of recurrences weighed against medical management. Cass eventually chose immediate surgery over attempts at medical management.

Multiple principles of preferences and decision making are evident in her story. Her ability to adjust to her “new” digestive system (in her words) post-surgery is evidence of patient-perspective adaptation, an oft-cited phenomenon in health state utilities. Moreover, her choice of immediate surgery over continued attempts at medical management demonstrates the individuality of preferences, as some around her voiced the opposite preference. And lastly, the support she received from her medical team in understanding and deliberating among her options was and is a critical piece of patient-centered care, and one to which she ascribes great value to in her path back to health.

We are glad she is back on the FAM-NET team, and wish her continued success in her recovery.

Learn more: Learn about FAM-NET’s work on measuring family well-being
Learn more: Learn more about preferences and values in decision

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