Beliefs, Attitudes, and Evidence

Beliefs, Attitudes, and Evidence

Don S. Dizon, MD, FACP, FASCO

Mar 07, 2014

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.”

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. I think it agrees with me, fortunately!” she said.

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 don’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. I often wondered why patients took a course of action contrary to what best evidence told us.  

On my way to work last week, I heard a story that might shed some light on this. As reported on NPR’s Morning Edition reported by Shankar 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 towards the road perhaps best traveled.

Until then, I will listen to my patient, her 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.


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Deanna J. Attai, MD

Mar, 10 2014 9:59 AM

Don - your last 2 paragraphs are a great description of shared decision making, something we should all strive for. We know all too well the potential harms of "unnecessary" (based on evidence-based guidelines) testing, treatment, and surgery. However, patient education alone is often not enough. We need to take the time to review the data, but also to really figure out what the patient's fears, concerns, and beliefs are. Some misconceptions may be clarified, but in the end, the decision for or against a particular test or therapy should be a collaborative one. Guidelines are just that - guides for therapy, not mandates. The art of medicine involves applying the evidence to the individual patient. 

Don S. Dizon, MD, FACP

Mar, 10 2014 4:20 PM

Dear Deanna: Thank you for your comments; thoughtful and provocative. Needless to say, I agree. We work in a culture of medicine where evidence is key, and at the heart of quality care. However, evidence aren't mandates, are they? Choice must come into play- lest we harken back to days of paternalism in medicine where "the doctor knows best". I don't mean to say we as physicians must do "as the patient says"; rather it means exactly as you have stated: evidence must be viewed from the perspective of the patient. Our work comes from trying our best to understand the rationale behind them, that "gut" instinct, which may at times, go against the evidence, or in the lack of such, national consensus. My best to you always, DSD

Ann Fonfa

Mar, 18 2014 6:51 PM

Hi Don, I see this as a perfect opportunity to suggest LIFESTYLE changes.  A woman like 'Mary' is seeking to DO something. I can understand that since many of us feel bereft when 'active' treatment ends.  We are not sure it is over (and often it is not). This is a time to talk about nutrition, physical activity, stress reduction, detox, and perhaps dietary supplements.  As a patient advocate, founder of Annie Appleseed Project, I see a real teaching moment.

Susan M. Love, MD

Mar, 18 2014 9:07 PM

I too was very impressed with that study about vaccines.  It has taken me a long time to realize that women who want bilateral mastectomies inspite of the fact that their risk is systemic and not local, want the illusion of control, even when they realize it is an illusion.  An important lesson. 

Don S. Dizon, MD, FACP

Mar, 19 2014 12:38 PM

Dear Susan, Thank you for posting! Even as an oncologist, I cannot begin to imagine the loss of control one may feel after the diagnosis of cancer and the fear of the future that accompanies the risk of relapse. I've often heard from patients it is akin to waiting for the other shoe to drop.
I think more than the illusion of control is the sense in one's gut that something must be better than nothing (which is quite opposite from those who do not wish to vaccinate their kids, which is in itself interesting).
It also highlights where our statistics cease being helpful. No amount of odds reduction, risk-benefit ratios, or talk of hazard ratios will be sufficient when the patient approaches her own health and her own history as an n=1.
Somehow, we may require a new conversation, based on understanding motivation, intuition, and those gut instincts better.
Really great to see you contribute!

Don S. Dizon, MD, FACP

Mar, 19 2014 12:42 PM

Dear Ann: Thank you for posting too. I agree about shifting the conversation as you suggest, stressing the importance of lifestyle, which is so key in ways beyond cancer- emotional health, fatigue, sexual health, and overall health are improved with healthier lifestyles, inclusive of dietary modifications and increased physical activity. I often make it a point to address these points for all patients, regardless of whether or not treatment ends or continues. But, these are definitely worhwhile conversations to have with our patients. Indeed- it is good advice even for us as clinicians! Thanks so much for your comments! DSD

Katherine Obrien

Mar, 25 2014 10:18 AM

Hi Dr. Don I always enjoy your thoughtful commentaries. This one is particularly timely as I considered this article:
Jessi FitzRandolph dies from breast cancer at 36 after trying alternative therapies
Jessi FitzRandolph, who went to Germany and Mexico for experimental treatments after being diagnosed with breast cancer four years ago, died March 19 at age 36.
“She had a huge heart and was never willing to give up,” said her father, Jeff FitzRandolph. “We did everything we could.”
Like her brother — Casey FitzRandolph, who won a gold medal in speedskating at the 2002 Winter Olympics — Jessi, of Verona, was athletic, playing soccer and volleyball in high school and college.
She discovered a lump in her breast in 2010. After she had a mastectomy, a scan showed the cancer had spread to her bones. Her doctor told her she had a 50 percent chance of living five years, she said.
“It kind of makes you a little angry, and it makes you want to fight harder and look elsewhere,” FitzRandolph told the State Journal in 2011.
She stopped chemotherapy and decided against radiation. Accompanied by her mother or father, she went to Germany six times for hyperthermia treatments. She laid in a machine while her body temperature was raised to 107 degrees in an effort to make her cancer cells more susceptible to chemotherapy.
Later, she spent three weeks in Tijuana, Mexico, trying treatments such as hyperbaric oxygen therapy, ozone treatments, high-dose vitamin C and infusions of laetrile, a controversial drug not approved in the U.S.
At home, she also used an electro-stimulus device called a Rife machine and held a magnetic paddle over her tumors. More recently, she took cannabis oil.
Jeff and Ruthie FitzRandolph said the treatments, aimed at promoting a healthy immune system, were considered less toxic than traditional approaches. They believe the treatments helped Jessi live longer than expected.
Jessi had a series of mini-strokes about two weeks ago, leading her to be admitted to Agrace HospiceCare. She died her third day there with her parents at her side, her mother said.
My sincere condolence to Jessi's family. I wish we knew why someone in her early 30s had to deal with metastatic breast cancer.  As you have done with some of your patients, I wondered why Jessi took a course of action contrary to what the best evidence told us. Why didn't she do things my way--i.e, following standard of care, which of course woud be the correct way, IMHO?   So it really hit home when you wrote: 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 towards the road perhaps best traveled.

Very true.

Don S. Dizon, MD, FACP

Mar, 26 2014 4:33 PM

Dear Katherine: Thanks for the post and for illuminating yet again how we cannot dictate treatments, only try to explain options, and the reasons why we support one versus another. We do have to do a better job of not only understanding the belief systems and gut instincts of our patients, though- this paper illustrates just how important it is that the notion of "evidence-based" treatment extend beyond "traditional" or Western medicine- but when it comes to cancer therapies, that same standard should apply to alternative therapies. No one knows if Ms. Fitz-Randolph would/could have lived longer (and/or perhaps better) with standard treatment approaches and sadly, we never will. All one can hope for now is that she is indeed in peace and that her family find solace and peace with the path she chose, the way she lived, and the legacy she leaves behind. Best, DSD

Jay Kallio

Apr, 21 2015 2:04 PM

Dear Dr Dizon,

Perhaps one of the reasons patients are uncomfortable going without surveillance is because of the many stories like mine. I went through a year and a half of treatment for aggressive breast cancer in 2008, and as an overly well educated paramedic I believe in evidence based medicine and took seriously the evidence that surveillance sans symptoms does not contribute value. I ignored and overrode the uneasy feelings and intuitive concerns I felt that I was still very sick, not wanting to be a hypochondriac, or one who keeps demanding services that are not indicated. When I finally developed abdominal symptoms which could not be explained by any common ailment I requested an oncology consult. The result was that lesions which had been dismissed as scar tissue in my lungs during my breast cancer treatment turned out to be stage 4, inoperable, aggressive KRAS positive lung cancer, a second primary. By the time I had symptoms, it was too late, and my prognosis was 6 months to one year. Much cancer is fatal because it is silent, until metastasis has done it's dirty work, and as cancer patients we all know patients who had no warning symptoms until it was too late. We ourselves may have had that experience.

Our logic is that since once you have had one cancer, you are at greater risk of another, and surveillance might help detect it while it is curable. In my case and many others, we still feel at risk, and the statistical evidence proving I "did the right thing" by not pursuing surveillance is cold comfort in my case. Within cancer patient support circles, I see many patients counseling each other to follow their intuitive sense that they may still have cancer and demand testing, on the "better safe than sorry" principle. Obviously I don't know whether surveillance would have been enough to thwart my lung cancer from metastasizing, but now I will never know. Perhaps explaining the alternate reasoning we cancer patients may employ illuminates why we often insist on surveilance, in spite of evidence.

Don S. Dizon, MD, FACP

May, 01 2015 1:27 PM

Dear Jay,

I apologize for not responding sooner. Your perspective is one that more than a few patients share. It also reinforces why guidelines cannot be treated as mandates. However, I do struggle with the idea that surveillance testing provides any reassurance for the future. That is, normal markers or imaging may provide reassurance of disease status at that time, but cannot inform what the case will be three weeks, three months, or three years later. Still, the individual must have a say in her own follow-up because, afterall, she is the one who is living with the diagnosis. D

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