Posted on November 14, 2017 at 8:00 AM
This post is written in response to Ubel, Scherr and Fagerlin’s target article, “Empowerment Failure: How Shortcomings in Physician Communication Unwittingly Undermine Patient Autonomy” published in the November 2017 issue of The American Journal of Bioethics.
by Susanne B. Haga, PhD
Most professional organizations have recommended a shift towards greater patient empowerment and shared decision-making. The result has been a data dump: An increase in the amount of information disclosed to patients. For example, discussion of a prostate cancer diagnosis may include the grading and scoring, followed by discussion of three possible interventions, the risks and benefits of each, and information regarding recurrence rate, probability of adverse responses, costs, lost work time, follow-up care, and other information. Presenting all of this information orally in a single office visit can be completely overwhelming, resulting in potential confusion and inability to engage with the provider. A discussion of only the interventions would be difficult for many people to process in the absence of the emotional shock of a diagnosis. Without the use of discussion aides, patient education materials, or other tools, and/or potentially dividing the discussion into two or more office visits, the goal of empowering patients may not be attainable. In their recent American Journal of Bioethics article, Ubel et al. confirms this challenge based on their observations of limited patient-provider discussions of prostate cancer diagnosis and treatment options.
To balance the exchange of information and discussion (currently dominated by the provider as reported by Ubel et al.), one or more follow-up visits with the provider or a treatment coordinator (e.g., nurse or counselor) may be needed. Physicians may immediately begin to discuss the benefits and risks of available interventions following communication of diagnosis. However, as noted in the article, many patients may not be in a rational emotional state to immediately consider treatment options. Prior to initiating a discussion of potential interventions, one should first assess a patient’s emotional state and readiness (or self-assessed emotional shock), assess the patient’s ability to comprehend complex information following disclosure of the diagnosis and only then dive into discussing treatment options. In the event the patient is not able to focus, deferring the discussion of interventions is the obvious choice.
When a patient is emotionally ready to discuss options for interventions, achieving patient empowerment and shared decision-making will require an exchange of information between the patient and provider. Since a long-term relationship is not likely to exist between the patient and specialist providers, providers may not be aware of the patient’s values, literacy level, and lifestyle. A priori knowledge of such information could greatly shape the direction and content of the discussion, creating a more patient-centered experience and fostering shared decision-making. Questionnaires can be utilized to avoid the need for an extra office visit (associated with higher costs and potentially delayed treatment) to enable collection of this information from patients and improve efficiency of the discussion. For example, a 12-item questionnaire regarding preferences for treatment and degree of control can be administered prior to discussion about interventions. In addition, patients may be uncomfortable sharing very personal details or asking questions in-person, such as regarding sexual health, particularly with a provider that they hardly know.
Such ‘communication boundaries’ and logical constraints (limited office time) could also be addressed by the use of web-based decision aids, which have been shown to improve patient-sharing about values, lifestyle, and other information in order to incorporate preferences into and improve treatment decision-making and reduce decisional conflict. A database of decision aids (Cochrane inventory of decision aids) has more than 350 types of decision aids for about 150 conditions, including 17 for prostate cancer. Decision aids can be web-based or printed and can help patients carefully consider their values, outside of the provider’s office, and have an opportunity to discuss issues with family members. Decision aids provide information about the treatment options, allowing patients to sift through the materials at their own pace and note points of confusion or questions to be asked during the next office visit. In adapting this ‘flip the classroom’ approach, whereby the patient reviews the educational materials before the office visit, the limited time with the provider can then focus on addressing patient questions/ concerns, clarifying misunderstandings, and incorporating their values into the discussion. The provider can use the teach-back method (where the patient describes their understanding of the information provided in their own words) to assess the patient’s understanding of the risks/benefits of each intervention to initiate the discussion. This approach may not be preferable for every patient (or provider), but may greatly help balance the discussions and ultimately empower some patients compared to current practices. If available, online patient-provider communication can extend in-person discussions.
While an initial discussion may understandably be dominated by the provider in today’s approach, use of additional tools or re-structuring of the communication process may yield more fruitful and balanced patient-provider discussion following diagnosis and achieve the goal of an empowered patient. As indicated by the references, work is ongoing to develop and evaluate new patient engagement and communication tools. More focus is needed on patient-provider communication given its large impact on outcomes for every single patient.
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