Story-Based Decision Making

Stories as Decision Aids

Traditional, didactic patient education materials on healthcare prevention and treatment intended to inform patient decision making often lack both context and cultural sensitivity. There is evidence that these materials are not as effective with people of color and minority populations, often those at greatest risk. To reach these populations, an alternative approach is to use stories.

People have always learned about themselves and their past through stories; human brains are designed to process stories instinctively. The ease with which stories are understood may be particularly important for patients who feel emotionally overwhelmed and psychologically exhausted yet still have to face complex treatment decisions. An example of a particularly difficult decision is one that involves uncertain, future benefits combined with upfront, guaranteed costs, such as mild to severe side effects and/or the potential for unnecessary, invasive treatments. If patients are unprepared for such immediate costs and/or fail to understand the trade-off they face, they may not adhere to the proscribed treatment regimen or engage in the preventive behavior. However, if patients could hear the stories of those who have gone through this decision-making process before them and come out the other end, they may be more likely to absorb and apply the information to reach a more informed decision.

Stories of Cancer Survival

An example of a medical decision for which stories may be particularly helpful is whether to undergo adjuvant cancer treatment, such as chemotherapy, after completion of one's initial treatment for cancer, often surgical removal of the malignant tumor. This decision is extremely difficult for most patients. First, there may be no benefit to the treatment—surgery could have removed all the cancer cells. Second, if there were any cancer cells left, they would typically be at the molecular level and, consequently, undetectable. So even if the treatment worked, the patient may never even know. Third, duration of survival is only one of [Page 1082]the issues. All adjuvant therapies are toxic, so experiencing side effects is nearly certain. Given such uncertain benefits and guaranteed, upfront costs, there is no “right” decision. Patients' choices will depend on how they perceive the trade-off between experiencing the toxicity of treatment now versus the (unknown) possibility of increased survival in the future.

Clinicians can provide factual information about this trade-off and may even use a decision aid to facilitate deliberations. At a minimum, a decision aid will have two components: (1) visual representations of the risks, benefits, and outcomes for each option and (2) a discussion of patients' values.

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