Advancing Shared Decision Making
For over two decades, the Informed Medical Decisions Foundation has been working to advance shared decision making through research, policy, clinical models and patient decision aids. We believe that the only way to ensure high quality medical decisions are being made is for a fully informed patient to participate in a shared decision making process with their health care provider.
Todays guest blogger is Christie Aschwanden. She is a health columnist for The Washington Post, a frequent contributor to The New York Times and a 2013/2014 Carter Center Fellow. She blogs about science at Last Word On Nothing, and her work also appears in Discover, Slate, Proto, Consumer Reports, New Scientist, More, Men’s Journal, NPR.org, Smithsonian and O, the Oprah Magazine. Her Last Word On Nothing piece about science denialism at Susan G. Komen for the Cure won the National Association of Science Writers’ 2013 Science in Society Award for Commentary/Opinion.
1. What prompted you to become engaged in your health care? Tell us your “ah ha” story.
As a journalist, I read the latest journal articles — often in advance of their publication — and regularly interview the world’s leading experts on medical research. It’s my job to ask questions and dig into the certainties, uncertainties and areas of dispute so that I can convey this information to my readers. I’m not a doctor, and I don’t give medical advice, but my work requires me to be a collator of medical information. It’s only natural that I would apply the same level of engagement to my own medical care.
The first example that I can remember happened very early in my journalism career. I was an endurance athlete at the time, training very intensely at high altitude in Colorado. I’d started to feel run down and unusually fatigued, even after I backed off my training. By happenstance, I wrote a story about a new paper examining iron deficiency in female athletes. The study found that performance dropped noticeably as iron levels approached the lower range of normal. I wondered if this research might apply to me. (Medical journalists can fall prey to “medical student syndrome” too.)
I brought the paper to my doctor, who agreed that iron deficiency might explain my fatigue. A blood test showed that my serum ferritin levels were just a hair above the threshold for anemia, and my problems faded after I boosted my iron intake.
2. Can you recall a time when you pushed back or challenged your doctor to get the care you needed? What surprised you about that experience?
At a routine appointment a few days after my 40th birthday, my doctor handed me a prescription for a mammogram. No discussion, just “here — go do it.”
When I told her that I was familiar with the U.S. Preventative Services Task Force recommendations and that, in my age group, these called for an individual assessment of the risks and benefits and a shared decision, she became very defensive and insisted that she was engaging in shared decision-making. She was advising me to get one because, “it could save your life.”
She never explained or acknowledged the risks, so I asked about them. Her answer was that the risk was a false alarm — a callback for something that would turn out to be nothing. It’s true that this is the most common risk — about half of women who begin annual mammography screening at age 40 will have a false alarm — but personally, I’m more worried about the risk that a mammogram would result in a diagnosis that would unnecessarily transform me from a healthy person to a patient undergoing treatment for a cancer or pre-cancer that would have never bothered me. I’ve studied studied the numbers and know that the chances of that happening are greater than the chance that I would have my life saved.
Yet when I mentioned the problem of overdiagnosis, my doctor just gave me a blank stare and then brushed me off. Either she didn’t know about this issue, or she didn’t feel comfortable discussing it with me, and this shocked and disappointed me. Ultimately, I ended up switching doctors.
3. Some patients are hesitant to become involved in the decision making process. What would you say to empower them to take an active role?
I’ve certainly talked to patients who say, I just want my doctor to tell me what to do. A lot of this is based on fear. There’s this sense that medical decisions are so life-and-death that you want the expert to make them. Of course, there’s a grain of truth to that. But the kinds of choices where shared decision-making is most useful and important are the ones where there’s uncertainty. If there’s only one obvious choice, then there’s not much of a decision to be made.
Shared decision-making doesn’t cut your doctor’s advice out of the process, nor does it place all of the onus for the decision on you. What it does is bring you and your doctor together to examine your choices and fully consider the probable benefits and risks of each so you can weigh them according to what’s most important to you.
Your doctor can’t assess which decision is right for you without knowing your values. Which potential risks worry you most? Which benefits are most important? These are questions that only you can answer. You can still defer to your doctor’s expertise, but the advice you get will be tailored to your wishes.
4. Some providers think patients don’t want to be involved in the decision making process. What would you say to change their minds?
Helping patients make informed choices often requires frank discussions about the limits of medicine. This process removes some of the false certainty that patients might feel in the traditional model, where the doctor essentially says, “I’m going to fix you.” With shared decision-making, the doctor must admit that, “I can’t guarantee that I will solve your problems, but I can walk you through the pluses and minuses of your options.”
Uncertainty is scary for patients and it’s uncomfortable for doctors, who many not want to admit that they’re not omnipotent. Yet putting our heads in the sand serves no one. Patients deserve to know the potential harms as well as the benefits of the choices before them so they don’t feel blindsided.
5. In an ideal world, what does patient-centered care look like?
It means that my health care provider and I are collaborators. I’m the expert on me, my body and my values, and my doctor is the expert on the practice of medicine. I’m capable of searching the medical literature to investigate the evidence on various issues, but my doctor has clinical experience and training that provides a crucial dimension to the decision-making process.
Ideally, patient-centered care should place a premium on communication between providers and patients. I just switched to a new family physician. During my first visit, there was no exam or testing, just a conversation to establish our relationship. I explained my concerns and needs, and she listened and took notes before advising me on anything. That listening was very important — it made me trust that she would take my values into consideration as she manages my care.
Christie is a health columnist for The Washington Post, a frequent contributor to The New York Times and a 2013/2014 Carter Center Fellow. She blogs about science at Last Word On Nothing, and her work also appears in Discover, Slate, Proto, Consumer Reports, New Scientist, More, Men’s Journal, NPR.org, Smithsonian and O, the Oprah Magazine. Her Last Word On Nothing piece about science denialism at Susan G. Komen for the Cure won the National Association of Science Writers’ 2013 Science in Society Award for Commentary/Opinion. On Twitter, she’s @CragCrest.
As we commemorate Shared Decision Making Month, we encourage patients everywhere to demand “No decision about me without me.” With the content, technology, and services Healthwise offers, and with the new expertise and tools we gain from our pending merger with the Informed Medical Decisions Foundation, it’s more possible now than ever that such a demand can be met. What promising news for Peggy Jo and all patients, wherever they live! Continue reading
The theme of the second week (March 10-14) is Shared Decision Making: The Pinnacle of Patient-Centered Care. Throughout the week we will focus on how shared decision making can help ensure that health care is truly patient-centered. Too often, the patient’s voice is not represented in health care decisions, so this week you will hear from real patients in our special guest blog post panel series.. We will also take a look at our progress toward greater engagement of patients and families in health care during a webinar this week and encourage you all to join us in an effort to create a more compassionate health care system that is responsive to the patient’s voice. Continue reading
What does shared decision making actually look like? We want you to show us! Throughout SDM Month we want you to send us photos and videos that answer that very question. Be creative and have some fun! If you have actual footage of a shared decision making conversation between a real patient and provider that you can share, we’d love to see that too! We will be putting together a wonderful crowd-sourced video montage for our digital freebie on March 27 under the SDM Month weekly theme of “Shared Decision Making in Action”. We hope you will contribute to this project and help illustrate what shared decision making looks like. Continue reading
Shared decision making can and should be a tool to help our patients obtain value in health care. As we try to align the patient, the payer, and the provider, more information regarding the disease process and the available options a patient has to choose from serves the system well. More importantly, it is good for the patient. Continue reading