The Inner Fire: Elizabeth Schoenfeld on Shared Decision-Making, Research, and More
Take two equal measures of dedication and passion, a shot of forthrightness, and stir all of these ingredients well – that’s when you have the distinctive combination that makes up Dr. Elizabeth Schoenfeld, an Emergency Medicine physician living in Western Massachusetts.
It’s not just teaching and working on her research at Baystate Medical Center (Tufts University School of Medicine) that make Schoenfeld such a well-rounded professional. When she’s not hard at work, or spending time with her hand-surgeon husband, she’s taking care of her two “wonderfully energetic” young children. When it’s not that, she’s skiing or rock-climbing with her family, or hiking and biking when the brutal northeast winters ease up. Cheryl Sandberg’s Lean In, and what she hails as a “fabulous” stereotype-defying children’s book called Rosie Revere, Engineer have been her favorites in the last two years (when she has had the chance to read!). But even with her huge life, she still manages to find the time to push forward a very important agenda – research on Shared Decision Making (SDM).
It is in this field of SDM that her passion lies. SDM’s process is a collaborative one that ensures that patients and their families and providers make healthcare decisions together, so that everyone is involved in a patient’s treatment. It takes into account all of the scientific evidence available at that point, but, more important, acknowledges the patient’s preferences and decisions. It’s a method that is fast gaining traction for its emphasis on the patient’s right to be fully informed of all the care options and the potential benefits or harms of them.
Schoenfeld was inspired by the process of SDM for several reasons, the most major being very close to home. “I’ve watched and helped many family members be patients over the past five or so years, particularly the last 10 years of my grandmother’s life (she died a year ago at 91),” she says. When her grandmother needed medical attention after suffering from a stroke, Schoenfeld was glad she was around to help out. “When you’re elderly, you might not always be in the right position to decide and verbalize what kind of medical attention you need or deserve, and I was there to help her articulate those choices,” she adds.
But later that year, when Schoenfeld’s grandmother required medical attention again, she was asked to have several other tests that she didn’t feel were necessary – “she was put through these expensive scans and tests, all of which weren’t really required, and it happened that I wasn’t there to discuss it with her,” Schoenfeld tells us, highlighting the importance of a shared discussion during times like these. “I think we as doctors make a lot of assumptions about what patients want and need, and we could do a better job eliciting these preferences rather than assuming,” she says, adding, “The costs were mostly covered by Medicare, but since Medicare is paid for by our taxes, it was passed onto us in that way. Extra costs like this can be either a burden on individuals or on society, depending on how you look at it.”
While some practitioners might raise an important point ─ that patients might not be trained or well-informed about what they need, and in effect, cannot be relied upon to diagnose and prescribe for themselves – Schoenfeld has a response for them. “The point of SDM is for a patient to know about all his or her options, options that are equivalent to one another, and the pros and cons of each. What it does is to start a discussion and give the patient a chance to add their input, and to put their thoughts and questions on the table. I don’t expect a patient to be trained or have the necessary knowledge,” she says, adding that a collaborative discussion like this benefits everyone in the long run.
She explains further, using her grandmother’s case as a specific example. “In this situation, she just needed something to relieve her pain. The question you’re asked when you come into the ER is, what are the goals of this visit? For her, it was to reduce her pain, but instead it became a case of too much testing. What should have happened is they should have asked her – do you want us to test you to figure out the cause or do you want to just treat this symptom and feel better? She would have probably answered yes to the latter, but here, instead of simply asking her that, there was a presumption that the first was better, which is not always true.”
The field of SDM definitely still has scope for growth, and Schoenfeld hopes to be able to contribute to it. “Most of the research is done in areas of chronic or ambulatory or surgical care – breast cancer, for example, with almost no research in critical care and acute care settings. But in any area where there is uncertainly, patient preferences could play a role. I’m particularly interested in decreasing resource utilization by keeping patients informed about the problems that come from over-testing,” she states. The field in general, she feels, has a lot of “uncertainty” and that will take time to change, in order for healthcare providers to realize its full potential.
The problems that come from over-testing are numerous, and Schoenfeld provides us with an illustration to elaborate. “A simple example ─ a 50-year-old gets a chest x-ray (maybe it was needed, maybe it wasn’t) and a small nodule is seen. The radiologist recommends a six-month follow-up ─ now the patient is worried about it; the six-month follow up may show that it hasn’t changed, or maybe the x-ray is just different enough that someone says ‘better get a CT,’–and the CT adds cost, worry, and inconvenience. Sometimes it will pick up an early cancer, but other times it will lead to even more tests. Maybe the read on the CT is that it’s still unclear, so the primary care doctor sends the patient to a thoracic surgeon, who has to get a biopsy, which is invasive, to be sure. Then, maybe that biopsy has complications and turns out to be a benign something. Testing begets more testing in our system,” she says.
She realizes that there is a counter argument to this – that if additional testing does show a malignancy, it might be wise to have it done, but she reiterates her previous point in this context. “Some years ago, when you could pay out of pocket and get a full body scan done, very, very rarely would something like that pick up early cancer. What we know about medical testing is this – in a few cases, it does pick up something and that detection might save you, but in most cases, it doesn’t and just leads to more and more testing. There are a number of counter examples to show that additional testing causes more and more problems. So I would say, yes, picking up the incidental thing is sometimes a good thing but that is not always the case.”
Her love for research stems, again, from her family. “My father is a bio-statistician. I believe strongly in evidence-based everything – medicine, parenting, public policy. I could teach my residents my beliefs, but ideally I’d like to prove them first, and teach them as evidence-based,” she says.
Her residents may also benefit from the solid advice she has to offer when asked about what she would say to a young researcher going into the same field. “I would say, ‘get good, solid, experienced mentors early, ask lots of questions and listen to them.’ I can’t tell you the number of times I haven’t heeded advice, only to come back and recognize it was correct. The right way to do things is often the hardest. Looking to get funding, especially, can be very overwhelming. The NIH guidelines can be confusing sometimes, so get help early on,” she says.
But there’s also another piece of insight she offers that is as helpful as the more tangible advice. “Don’t go into research if you’re not passionate about it – there are lots of other things to do with yourself within medicine – for research, you need some inner fire.”