Shared Decision Making—The Patient's Role

What are your preferences, needs, and values when it comes to your health? When confronted with an important medical decision do you and your doctor discuss how the various diagnostic and treatment options—including doing nothing—may effect the physical, emotional and social aspects of your life? 

If Dr. Michael J. Barry and Physician Assistant Susan Edgman-Levitan had their way doctors would be asking their patients "What Matters to you?" as often as they do "What's the matter?"

Their article—Shared Decision Making—The Pinnacle of Patient-Centered Care which appears in the March 1st issue of the New England Journal of Medicine—points to the need for clinicians to "relinquish their role as the single paternalistic authority and train to become more effective coaches or partners...."

Patients, too, need to be educated about their role and given the tools and emotional support they need to fully participate in the process—without fear of criticism or judgment. Dr. Barry and Ms. Edgman-Levitan believe that by adopting the principles of shared decision making, "clinicians can help patients understand the importance of their values and preferences in making the decisions that are best for them."

This is especially relevant when a "patient arrives at a crossroads of [acceptable] medical options" each of which is associated with benefits and risks that may have profound and lasting effects. The authors cite as good examples: "... therapy for early stage breast cancer or prostate cancer, lipid-lowering medication for the primary prevention of coronary heart disease, and genetic and cancer screening tests...."

Dr. Barry is President of the Informed Medical Decisions Foundation and Ms. Edgman-Levitan is a Board member. The organization, which was founded in 1988, works to advance shared decision making through research, policy, clinical models and patient decision aids. The Foundation's website offers a wealth of information, tools, and resources, including videos of patients and providers discussing their experiences with shared decision making.

Here's a brief introduction:

Tools for Making Difficult Decisions

Whether you are newly diagnosed or have an existing chronic disease or condition, there may come a time when you have to make a difficult decision about treatment. 

Usually, what makes the decision so hard is our uncertainty about the benefits and/or potential risks of all the available options—none seems ideal. Or we may lack the information or confidence needed to make a decision preferring instead to trust that our doctor knows what is best. Other times, we may feel pressure from family or from our doctor to agree to an option that just doesn't seem right to us.

Finding information and evaluating options can often be overwhelming and when that happens it's helpful to have a way to think through what is important to us, what risks we are willing to take and how prepared we are to accept the consequences of our decisions. 

The Ottawa Personal Decision Guide takes you through the decision making process with questions that ask you to consider how certain you are about your decision, what you know about the benefits and risks of each option, what more you may need to know, what matters most to you, who else you want to involve, and suggests next steps like where to find information and support.

You can complete the one-page form on line or download a two-page printable version to complete by hand at http://decisionaid.ohri.ca/decguide.html

The forms are also available in Spanish and Japanese.

NexCura has developed what they call "timely, targeted, evidence-based and personally relevant" set of tools for patients with cancer, heart and lung disease that a number of organizations—including the American Cancer Society, the American Heart Association, and the American Lung Association—have incorporated in their websites. You can find the list of tools at http://www.nexcura.com/ToolsAvailable_AboutTools_PatientCare.asp 

All these tools are meant to prepare you for discussions with your healthcare provider so that together you can decide which treatment approach is right for you.

In a recent review of all the clinical studies that have been done to evaluate decision making tools, O'Connor and colleagues found that decision aids increase people's involvement and are more likely to lead to decisions that are informed and based on the individual's personal values—something that no one knows better than you do, not even your doctor.

Reference

O'Connor AM, Bennett CL, Stacey D, et al. Decision aids for people facing health treatment or screening decisions (Review). The Cochrane Collaboration. Published by John Wiley & Sons, Ltd., 2009. Available at http://decisionaid.ohri.ca/docs/develop/Cochrane_Review.pdf