Making difficult decisions: How cancer patients play a role in their treatment choices

Many discussions revolve around how active cancer patients are in decisions about their treatment. In my experience working with cancer patients, I have observed that we often try to quantify how many patients play an active role. However, for a better understanding of the roles that patients play in treatment decisions, it’s important to have a shared language about how to categorize patient engagement. A model that I find useful is the Decisional Processing Model, which describes four styles of decision making:

• Information seeking: People who actively seek information and think about it carefully before making decisions
• Information processing: People who do not seek additional information but carefully think about the information presented to them before they make decisions
• Advice following: People who do not spend much time thinking about the information provided but follow the recommendations of others
• Ruminating: People who avoid making decisions

We know that greater patient participation in treatment decision making can lead to improved health outcomes. This leads us to try to empower patients to play a more active role in their care. However, in looking back on their own treatment experiences, many patients have reported that they wanted to participate more than they actually did. This discrepancy may result from healthcare providers’ assumptions about how involved patients want to be or from patients’ lack of awareness about the roles they can play in their treatment choices. Either way, there clearly is a need for skill building so that healthcare providers and patients can communicate effectively.

Then again, patients who are advice following and ruminating may not want to actively participate in treatment decisions. In fact, research suggests that even if we wanted to encourage such patients to be more involved, in the midst of a major life event such as a cancer diagnosis, a person’s decisional style remains fairly constant, regardless of his or her level of anxiety or depression. This may mean that a person’s decision making style is like an inherent personality trait, rather than a style based on the situation. In fact, over time people tend to revert again and again to the same method of making decisions.

Although we may not be able to promote more active participation from a ruminating patient, we can try to ensure that all patients experience their desired level of engagement. The discrepancy between what patients prefer and what actually occurs highlights a need for improved communication between patients and healthcare providers so that patients are engaged in the ways they want to be. Tools such as decision aids are one way to help patients be more involved and informed throughout the treatment continuum. As health educators, we can and must recommend programs and resources to help facilitate these conversations.

Tara Rice
Manager, Health Education
Encore, a HealthEd company

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