To set the stage for a discussion of treatment options, every patient seeking treatment for prostate cancer at UCLA Health receives a link to an online tool that collects information about the patient’s clinical situation, personal preferences, and values.
“When they go on to see the doctor, they have a higher quality and more effective visit,” says Christopher S. Saigal, MD, vice chairman of urology at UCLA Health.
That protocol of shared decision-making — patients and clinicians working together to make decisions that align with patients’ preferences and values — is embedded into every treatment plan. Although the use of that software program is not ubiquitous among urology practices, shared decision-making is.
“It’s such a part of our discipline that it’s in the water,” says Saigal, who also serves as medical director for UCLA Health’s Physician Quality Officer Program.
Shared decision-making courses are presented at professional meetings for urologists, and the American Urological Association (AUA) guidelines recommend shared decision-making for most of the major conditions that urologists treat. Indeed, the use of shared decision-making as the preferred approach to make treatment plans for men with prostate cancer is one of only 10 AUA guidelines with level of evidence A, reflecting support by evidence from multiple randomized controlled trials.
But that level of commitment to shared decision-making is not the norm in U.S. medical practice, experts say. Despite widespread enthusiasm for the idea of shared decision-making, health systems have not prioritized its use. Physician practices are challenged to embed it into their workflow, and some physicians’ attempts at shared decision-making may miss the mark.
“Many clinicians feel they’re doing shared decision-making, but when their patients are surveyed, they don’t always agree,” says Michael J. Barry, MD, director of the Informed Medical Decisions Program at Massachusetts General Hospital. “We’ve made progress over the last 15 years, but how much is really happening day to day in the practice of medicine? I think we don’t know.”
Daniel Matlock, MD, MPH, director of the Colorado Program for Patient-Centered Decisions at the University of Colorado Anschutz Medical Campus, has a pretty good idea: For most health systems, shared decision-making is more of a buzzword than an organizational imperative.
“People want to say, ‘Oh yeah, we do shared decision-making; our care is very patient-centered,’ ” Matlock says. “OK, then have you talked to your docs? Did you measure how patient-centered they are?”
“Most of the successful examples of widespread shared decision-making are one-offs, often in clinical settings,” he says. “I can count them on one hand because that’s how few and far between they are.”
High-level Support
Among the many organizations promoting the universal adoption of shared decision-making is the influential National Quality Forum, which endorses quality measures and strategies to reduce costs and improve patient care. In 2018, it published a National Quality Partners Playbook that called shared decision-making a “healthcare imperative.”
The Forum’s focus on shared decision-making reflects the need to improve patient-centered—or person-centered—care, says Peter B. Angood, MD, CEO of the American Association for Physician Leadership.
“We just don’t have the right systems and processes in place to effectively do true patient-centered care,” says Angood, who served on NQF’s Shared Decision Making Action Team. “That requires engaging the patient in the decisions needed to be made in terms of what their treatment plan should be and, if they’re not sick, just how to manage a more healthy lifestyle.”
The playbook identifies three components for true shared decision-making:
Clear, accurate, and unbiased medical evidence about reasonable alternatives, including no medical intervention, and the risks and benefits of each.
Clinician expertise in communicating and tailoring the evidence for individual patients.
Patient values, goals, informed preferences, and concerns, which may include treatment burdens.
“SDM can become a standard of care for all patients regardless of setting or diagnosis, but that can only happen when patients and families understand the importance of their input and engagement in healthcare decisions, and clinicians understand the importance of involving patients in decisions–and when both are supported in doing so,” the playbook states.
The Action Team identified six fundamentals that healthcare organizations must embrace to implement shared decision-making:
Promote leadership and culture.
Enhance patient education and engagement.
Provide healthcare team knowledge and training.
Take concrete actions for implementation.
Track, monitor, and report [findings].
Establish accountability for organizations, clinicians, and patients.
Angood points out that shared decision-making will only be truly embedded throughout an organization when “leaders embrace it, educate the staff, shift the culture, and then begin to measure the effectiveness of that culture and the consistency of that approach.”
“We have to make sure that we get leadership engagement and support for this, regardless of what type of institution folks are working in,” he says. “This recognizes the sanctity of the patient-physician relationship and how critically important it is in healthcare.”
Decision-Making in Real Life
Matlock, a geriatric medicine specialist at University of Colorado Medicine, got interested in shared decision-making when he saw hospice patients who had implanted defibrillators that were still functioning.
“They had no idea that this defibrillator in their body could potentially shock them, and nobody had had a conversation with them about turning it off,” he says. “I remember thinking we do a terrible job of informing people and, especially as people get older and sicker, they might not necessarily want all the things we can do just because we can do them.”
His research focuses on older adults making decisions about invasive cardiovascular technologies, and he sees a basic challenge that impedes shared decision-making: Patients want their physician’s recommendation, and physicians want to offer a recommendation, so their conversations often fail to consider the patient’s values and preferences.
He quotes a cardiologist from one of his qualitative studies, who articulated a theme that several others had touched on. “We were talking about defibrillators, and he says, ‘I’m scared to tell them the risk because I don’t want them to make a bad decision and not proceed with therapy,’ ” Matlock says. “He was a salaried physician, so money wasn’t an incentive. He just really felt like his patient needed it. This is done with the best intentions, but it is paternalism.”
For many medical situations, decision aids — typically booklets, videos, or web-based tools — have been developed to explain the risks and benefits of various options and to help patients clarify and communicate their personal values about specific features of an option. Although shared decision-making does not require a decision aid, Matlock thinks a well-designed decision aid, read or viewed by the patient prior to a physician visit, is the best way to implement the practice.
Barry is a co-author of a systematic review, published by the Cochrane Collaboration, that concluded that patients who use decision aids improve their knowledge of the options, feel better informed and more clear about what matters most to them, and probably have more accurate expectations of benefits and harms of each option. Published in 2017, it is the most widely cited of any Cochrane review, Barry says, but many evidence-based decision aids never get distributed to patients.
“There are more than 100 trials involving more than 30,000 patients that show better health decisions with the use of decision aids,” he says. “Despite that abundant evidence, I think they’re still underused.”
Matlock points out that decision aids alone do not guarantee shared decision-making. Physicians need to believe the decision aid is worthwhile, use it to guide a conversation with the patient, and respect the patient’s values and preferences, none of which may automatically happen without sufficient support.
“As we have done more implementation research, we have learned that, whether there’s a decision aid or not, doctors will still probably skew the conversation,” he says. “So you have to intervene with the docs as well.”
Shared Decision-Making in Action
Saigal’s interest in treatment decisions for patients with prostate cancer led him to create a software program that collects information about a patient’s medical condition, predicts prognosis with various treatments, and identifies the most effective treatment option that aligns with the patient’s values.
If, for example, an obese patient with diabetes is considering knee replacement surgery, the program could calculate the probability of various outcomes associated with each treatment option. The patient would respond to a series of questions about potential side effects and benefits of those treatment options to clarify which treatment is best for them.
“We can quantify the strength of their preferences — for example, how important is improvement in knee pain versus the risk of a re-operation,” Saigal says. “And we give them a list of evidence-based options in ranked order that show the likelihood of meeting the patient’s values and preferences.”
UCLA Health clinicians use the tool to support shared decision-making for prostate cancer, benign prostatic hyperplasia, and kidney stone treatment, and for colon cancer screening. Other organizations have licensed the software to support shared decision-making in advanced care planning, blood pressure management, diabetes management, and other medical situations.
Saigal says physician buy-in, which is essential to the adoption of shared decision-making, requires designing a process that does not interfere with the physician’s workflow and, in fact, creates value for the physician.
For example, one health system asks women seeking treatment for uterine prolapse to complete the WiserCare module before their first appointment. Those who choose non-operative treatment are scheduled with a nurse practitioner, and those opting for surgery meet with a gynecologist. “That makes the clinicians’ life better because that’s how they want to practice,” Saigal says.
The Value Conundrum
Early studies found that shared decision-making may reduce the utilization of invasive procedures. After Group Health Cooperative introduced decision aids for people with knee and hip arthritis, rates of knee replacement surgeries dropped by 38% over six months, while hip replacement surgeries fell by 26%. A subsequent study, however, found that the use of a decision aid increased rates of knee replacement surgeries among Black patients, a population that has traditionally had lower rates of the procedure, Barry says.
“In other words, shared decision-making supported by decision aids is more about finding the right rate for doing things,” he says. “And as such, it may be a tool to deal with some of the inequities in healthcare that are so ubiquitous.”
Still, health systems working under the fee-for-service business model find it hard to justify implementing a process that might reduce utilization. “There’s a lot of data supporting shared decision-making, and there’s a lot of pull from patients to have more of this,” Matlock says. “But I’m still trying to figure out what is the value proposition for a hospital — there’s not a great one from a financial perspective.”
That may be changing, however. The Centers for Medicare & Medicaid Services recently mandated shared decision-making as a condition for payment for implantable defibrillators for some patients, as well as left atrial appendage closure devices and lung cancer screening using low-dose computed tomography.
Shared decision-making also may help health systems succeed in value-based payment arrangements. For example, UCLA Health contracts with an insurer using an alternative payment model that incentivizes the health system to reduce care gaps. All UCLA Health patients who are covered under that contract and have not received recommended colon cancer screening receive a WiserCare module to help them understand their options — colonoscopy, fecal immunochemical test and others — and respond to questions about their preferences to identify their best choice.
The health system follows up by making the chosen test available, and patients are more likely to follow through because they have been allowed to choose based on their preferences.
“So there are ways in which you can use shared decision-making to increase the use of appropriate care,” Saigal says. “Since payment models are shifting to support using the right amount of care to keep people healthy, I think this is a win for everybody.”