Making Treatment Decisions with the Help of Other Patients

The establishment of informed consent was a hallmark in the world of medicine and bioethics, giving patients unprecedented autonomy over their own medical care. However, in spite of its intended benefits, many have questioned its efficacy in providing patients the opportunity to make an informed decision.

In an attempt to provide better decisional support, researchers have begun to design decision aids to serve as supplementary material to the traditional, and notoriously complex, consent forms. By simplifying language, adding pictures or diagrams and incorporating multimedia, decision aids can increase patient knowledge and reduce decisional conflict. As these aids gain acceptance in the medical community, there have been more efforts to develop ways of delivering useful decision-making information. One especially popular feature, utilized in more than 80% of decision aids, is the inclusion of narratives of patients who have undergone the treatment in question (Shaffer 2014).

Decision aids with patient narratives have many positive features. A video clip of a narrative demands the patient’s attention and is more engaging and memorable than a consent form. Hearing someone talk about their first-hand experience prompts patients to see past the jargon and numerical risks in consent forms and predict what life with treatment would be like, a task many in these situations find difficult. Such a tool would be especially useful when patients face many different treatment options that are hard to weigh against one another, as with cancer.

Despite their potential, there has been a fair amount of debate on the objectivity of narratives. The goal of a decision aid is to help patients be more confident in the decisions they make, not to push them to make a specific decision. Narratives therefore walk a narrow ethical line between being helpful and being forceful.

Dr. Shaffer of the University of Missouri and her research team have attempted to separate the valuable features of narratives from the potentially harmful features. The team first examined two different styles of narratives: process narratives and experience narratives. As the names imply, process narratives recount a patient’s process in making a treatment decision whereas experience narratives recount a patient’s experience undergoing treatment. Confirming the researchers’ hypotheses, the participants who saw the process narratives actively sought out more information related to what was presented and the participants who saw the experience narratives were better able to imagine what it would be like to undergo a specific treatment and were more confident in their decisions. (Shaffer 2013).

These results confer hope for the future inclusion of narratives, as these decision aids were shown not to affect treatment choices and to instead promote healthy decision-making, including further research into treatment plans, and decisional confidence. Nevertheless, there are still many ethical issues that remain unaddressed. Experiences with a treatment differ by patient, so a narrative that includes a few patients talking about their experiences will not necessarily provide a comprehensive view of that treatment option. Although participants were more confident after viewing an experience narrative, this study did not look at decision satisfaction after the treatment, which may change if participants did not have the same experience as those giving narratives.

Furthermore, in another study, individuals’ decision-making styles were shown to influence reaction to narratives.  For the decision aids with narratives, individuals with high health literacy felt that the aid was more trustworthy whereas individuals with high numeracy skills felt the aid was less trustworthy. Individuals inherently react to the world around them in different ways, but the fact that a simple patient narrative can evoke such variable responses is concerning. Informed consent is built on the premise that everyone should have the opportunity to make an informed decision; if individuals viewed the decision aid as less credible because of the narrative, they may not feel informed enough to make a decision. This counters a decision aid’s role in supplying information that would be useful to the informed consent process. (Shaffer 2014).

Better approaches to informed consent are essential for giving patients the opportunity to become powerful players in their own care. The movement to develop narrative-based decision aids has been a step in the right direction, but the potential of these decision aids is limited by the host of challenges they present. Still, patients often seek out narratives on their own, online or through friends. How different would the decision-making process be if decision aids included narratives that offered an assortment of balanced perspectives for every patient? So far, research has highlighted the potential for narrative-based decision aids to improve decision-making and informed consent but leaves room for further exploration of whether and how they may be practically implemented.

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