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Shared Decision Making: Blending Beliefs and Attitudes With Evidence

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I still remember being taken aback by how young she was. "She" was Mary – a 28-year-old woman who had completed chemotherapy for stage II breast cancer. She was treated elsewhere and had moved cities when her husband got a promotion. "I'm still getting used to this area, but I am happy my hair came back before we had to move. I can't imagine trying to set up a new house and have to go through my cancer history with strangers. I just don't want to be that young mother with cancer," she told me.

We reviewed her medical history, the details of her pathology, her prior treatment and current endocrine therapy. "How are you doing on tamoxifen?" I asked. "Fine," she said, "I think it agrees with me. Fortunately!"

We discussed surveillance after treatment, the frequency of follow-up and what that should entail, and I told her: "Based on what we know, checking your labs or doing imaging in the absence of symptoms or a reason doesn't help us help you. I don't recommend testing if you feel well otherwise. How do you feel about that?"

All of a sudden, she appeared uncomfortable: "Well, my doctors gave me the same advice, but I am not comfortable with surveillance. I don't want to not get any tests."

I tried to reassure her, tried to explain my rationale and that it was based on ASCO guidelines. However, she stopped me before I could get any further. "I know you are trying to help me, and I understand what you are saying. I have read the guidelines, done my reading. I've gone to every site that anyone has told me to read, and I get it – extensive testing doesn't help women live longer after breast cancer," she stated. "But, I need to do more. My gut tells me I should do more. That's why my prior doctors checked tumor markers for me every three months. That's why I do a chest X-ray every six months. I can't just stand by and do nothing. I just can't."

After speaking with multiple colleagues, I know this experience is not uncommon, and I've often wondered why patients take a course of action contrary to what best evidence tells us. On my way to work last week, I heard a story that might shed some light.

As reported on NPR's Morning Edition by Shakar Vedantam, a study by Brendan Nyhan and colleagues at Dartmouth evaluated public health messaging around vaccines and whether they helped to address parental attitudes (and reluctance in some) to vaccination. They randomly assigned almost 1,800 patients to four interventions aimed at highlighting the evidence underlying the risks of autism (or lack thereof) and benefits of the measles, mumps, and rubella (MMR) vaccination, and the dangers posed to children who are not vaccinated. At the end of the study, they found that while interventions reduced misperceptions about the MMR and its link to autism, parents who expressed the least favorable views on vaccination were no more likely to vaccinate. As summarized by Mr. Vedantam, while one would hope that attitudes are shaped by facts, it might be that "beliefs about facts are shaped by attitudes."

So, what does this study on vaccines have to do with my patient? It suggests that if we are to improve the quality of cancer care, it is not enough to present evidence or even guidelines when we talk to our patients (or to our colleagues for that matter). Instead, as Nyhan et. al. emphasize in their study, we must start by "measuring beliefs and behavioral intents when assessing health interventions," and I agree. Only by understanding the ground on which our patients stand can we begin to walk that path with them, and perhaps point them toward the road we think is best traveled.

Until then, I will listen to my patient's values and preferences. Knowing that she has taken best evidence under consideration, I will do what I did here: proceed with the surveillance testing that both she and I were comfortable with.

This post originally appeared on the ASCO Connection blog on March 7, 2014.

More Blog Posts by Don S. Dizon

author bio

Don S. Dizon, M.D. is a medical oncologist specializing in the treatment of women with cancer. He has interests in both novel treatment strategies and cancer survivorship, particularly as it relates to the sexual health of female cancer survivors. He sees patients in the Division of Medical Gynecologic Oncology at the Gillette Center for Women’s Cancers at Massachusetts General Hospital and is a Deputy Editor of Oncology at UpToDate. Dr. Dizon is a member of the American Society of Clinical Oncology (ASCO), where he is the Immediate Past-Chair of the Integrated Media and Technology Committee. He is also an Associate Professor of Obstetrics and Gynecology and Medicine at The Warren Alpert Medical School of Brown University. Dr. Dizon blogs at ASCO Connection, where this post originally appeared.


Tags for this article:
Evidence-Based Medicine   Don S. Dizon   Disease Screening   Communicate with your Doctors   Make Good Treatment Decisions   Participate in your Treatment   Promote your Health   Get Preventive Health Care   Seek Knowledge about your Health   Women's Health   Lifestyle and Prevention   Cancer   Inside Healthcare   Medical/Hospital Practice   Patient Engagement  


Comments on this post
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Marilyn Mann says
April 8, 2014 at 4:48 PM

I have the opposite situation. I'm a breast cancer survivor and my oncologist orders labs periodically. I don't think they are needed, but it doesn't seem important enough to argue with him. If it was important to me, I would object but it's not worth it to me in this case. Thoughts?

Marilyn Mann says
April 8, 2014 at 5:05 PM

I have the opposite situation. I'm a breast cancer survivor and my oncologist orders labs periodically. I don't think they are needed, but it doesn't seem important enough to argue with him. If it was important to me, I would object but it's not worth it to me in this case. Thoughts?

Don S Dizon says
April 8, 2014 at 9:37 PM

Dear Marilyn: Only one person need to decide whether or what to "fight" about. I think choosing the issues you deem important is part of what makes someone empowered.

However, I would also suggest there is no harm or insult to ask any clinicians, "why?" Why do we order labs, why do you need that chest x-ray, why do you need that EKG. Often, especially in a busy clinical setting, clinicians will fall back to routines based on the diagnosis, rather than evaluate each case and individualize.

Gentle prodding should not be an off-putting experience- for either of you.

Christy Lee says
April 26, 2014 at 2:28 AM

Patient/doctor relationships are such complex interactions! As much as I think that the easy accessibility of health information can be beneficial to creating educated and informed patients, it can also create confusion and uncertainty. From my personal experience with breast cancer diagnosis and treatment, I often found that when I did consult the internet for information regarding my own medical questions, for every legitimate site there were dozens more that offered wonder cures and quack science. It was not always clear which sources were on the up-and-up and which ones were bunk. Even the reputable sites sometimes offered differing recommendations regarding treatment efficacy and other patient advice.

With a life altering diagnosis like cancer, one might struggle with what they previously thought were unshakable beliefs. When the patient only has a limited time with her clinicians, how does she become a cautiously informed patient that frames the right questions while remaining faithful to her beliefs and attitudes?

Don S. Dizon says
April 29, 2014 at 10:56 AM

I understand that the "wealth" of information online can overwhelm- and then to choose between reliable and unreliable can make matters even more overwhelming. I often will point patients to ones I use personally, like cancer.net, NCI.gov, and the American Cancer Society websites. In terms of becoming informed, come prepared- write down the questions you want to discuss with your doctor before you visit. If you want input on a particular piece of information, understand what you want him or her to comment on. Often we will not know what/where you got the info from, but if a specific question arises from it, we can generally answer it (Rather than, tell me what you think about this...) Mostly though- never give up on your belief system and listen to that inner voice telling you if things are OK or not OK. You arent there to make "us" feel better, you are there because you have a medical diagnosis. Think like a consumer of healthcare- not a passenger. Aim for partnership and I think you will be okay. DSD

Matt Wynia says
July 15, 2014 at 11:14 AM

Don - thanks for a sensitive and thought-provoking post. Can you say more about the policies that should be in place to support (or balance?) patient-centered and evidence-based care? The reason routine screening isn't recommended is because there are downsides, both in regard to medical outcomes (needless testing leads to more needless testing, needless treatments and potential harms) and costs. For example, with your patient, does her insurance plan cover checking tumor markers every 3 months and chest films every 6 months? If so, is that appropriate and can you say why?