Why shared decision making may not be that simple

You’re facing a big medical decision. Who will help you call the shots? And what’s your doctor’s role in it all? 

When there’s a big medical choice to be made, in recent years, there’s lots of support for shared decision making between doctor and patient.

Margaret O’Kane, president of the National Committee for Quality Assurance, says it’s a cultural shift that reflects how sophisticated American medicine has become.

“40 years ago, often, there wasn’t much that medicine could do for you, let alone a choice of different pathways,” O’Kane said.

To avoid being over treated or undertreated, patients need to be fully informed about their options, O’Kane said.

“You may go to a cardiologist who does stents, and you may not hear about the other option. Or if you go to a surgeon, you may be recommended for surgery,” she said.

Megan’s choice

About a year ago, when Megan do Nascimento first learned she had breast cancer, she was a little tamped down from her normal, bright self.

Today, she wears neon yellow glasses. She’s the mother of teenagers. Do Nascimento is a woman who knows how to speak up, but when she was diagnosed with a large, aggressive tumor—and the doctor laid out the treatment plan—early on—she didn’t ask many questions.

“My oncologist is this major, important doctor in Philadelphia, when you finally see them, you’re like, ‘ah, I don’t know what to say next,'” she said. “I thought, you are going to cure my cancer. I will do whatever you say.”

Do Nascimento had to choose between a lumpectomy—a breast conserving surgery to remove the tumor and a limited amount of tissue around the cancer site. That choice meant a quicker initial recovery but also weeks and weeks of follow-up radiation therapy. A mastectomy is more invasive with more recovery time, and do Nascimento worried she’d have to really rely on other people.

“Every day I flip flopped,” she said.

The survival rate after both surgeries is about the same, and the doctor didn’t strongly recommend one treatment or the other. She thought maybe the surgeon was pushing for the lumpectomy, but thinking back, she isn’t sure. She even had a big plan to ask her breast surgeon what he would do for his own wife.

“When I got to see him, I chickened out, I didn’t ask him,” do Nascimento said. “I thought that all my doctors should have a meeting together, this meeting of the minds—where it was my oncologist, my breast surgeon, my gynecologist, my primary—everyone that was involved and say: ‘What should we do with Megan? Alright, those that think mastectomy, raise your hand. And whatever the decision was, the majority rules, I would have went with that.”

That meeting did not happen, but she did join an online support group and begin to look for advice elsewhere.

“I stopped women on the street if I saw a chemo head—as we call it—or a pink shirt that said ‘survivor.’ I would hunt them down. And actually they were happy to show me their breasts, whenever possible: ‘This is what my surgeon did for me and I feel great, I look great,'” do Nascimento said.

She put the question out to her Facebook group: “Ladies, I need help what should I do?”

The women met up in person last month at a Living Beyond Breast Cancer convention in Philadelphia where they celebrated health milestones. 

In a hall full of women making scarves and buzz cuts look chic after chemotherapy, do Nascimento stood out. Her graying pixie cut suits her compact body and big personality. She says the stories she heard, and the support she got from Jennifer, Lise, Chanel, and Kristina helped.

Kristina’s sister’s cancer came back after a lumpectomy.

“I think we were texting or Facebook messaging at 11 o’clock at night. When I was making that decision, I remember that conversation, I appreciated that,” do Nascimento said.

She decided on a double mastectomy—the option with a slightly less risk of the cancer returning. 

“It was easy to put on my calendar, and it was easy to tell women: ‘I’m in control, I made this decision. I’m going for it, I’m a rock star,’ but it was hard,” she said.

A 2013 study of women newly diagnosed with breast cancer tries to better understand the role of a patient’s social network on treatment decisions. That investigation found that the influences of other voices—friends and family—online or off—isn’t well understood by clinicians.

Decision tools

Experts are learning that individual patients have varying appetites for wading into the muck and detail of a complicated medical choice. Shared decision making between doctor and patient is the expectation. But sometimes, this is the reality: “I just want my doctor to tell me what to do, we heard that from a lot of patients,” said Margaret O’Kane.

She leads the board of Healthwise, which sells education tools and patient decision aids to hospitals and health plans. Videos and online questionnaires lead patients step by step through treatment alternatives. Insurance companies and other health payers hope the tools will lead patients to choose appropriate care, and ultimately drive down the cost of unnecessary medical procedures.

Those tools can be a great first step in shared decision-making, O’Kane said, as long as a physician is willing.

“I had a board member who said: ‘Some doctors’ ideas of shared decision making is: Here’s my decision, let me share it with you,'” O’Kane said.

During a health crisis, many patients want a treatment recommendation from their primary care provider, who is often the health professional they know best. But O’Kane says concerns about overreaching–or malpractice–can keep a doctor silent. 

“They feel at times they don’t want to get between the specialist and patient,” she said. “It’s not simple, none of this is simple.”

David Chen, attending urologic oncology surgeon at Fox Chase Cancer Center, says decision tools can help unpack a complicated set of facts when two alternatives are equally good.

Social scientists have discovered that lots of people zone out when a doctor starts talking about probabilities and risks, so Chen sometimes uses an online tool to simplify a complicated calculation.

After getting a prostate-cancer screening test—and learning that the result is abnormal, a man has many choices. Watchful waiting, more testing, or surgery are among the options.

One online calculator, lets men enter their age, race, and family history. The tool displays 100 faces representing the chances that the patient will develop prostate cancer.

On the graph, red frowny faces mean high risk. Yellow neutral faces mean cancer, but, likely a less aggressive kind.

“Some of the faces are happy, green faces, which represents the number of times out of a hundred that you would not have cancer or that the results would be favorable,” Chen said. “You wouldn’t need to do anything further, you shouldn’t need to worry about prostate cancer.”

Chen says all these tools are best used in consultation with a medical provider. “It can be helpful for estimates but not to hang your hat on,” he said.

Part of shared decision making includes helping patients pinpoint what they care about most—and that can be a deciding factor when there’s a medical decision to be made.

“It could be as simple as: your treatment could take three days, or it could take eight weeks. ‘Does that matter to you from your work life, family life?'” he said.

Patients ask Chen all the time: What would you do? But he said he tries to work around his personal biases when he’s guiding a patient.

“I do tend to steer certain patients away from surgery, because surgery itself has risks,” Chen said. “There will be people who will say, I understand those risks, but I can’t live with leaving this cancer inside my body, and I need to have this cancer out. We respect what a patient chooses.”