Why You Should Feel Empowered to Make Your Own Healthcare Decisions
How shared-decision making is changing the face of healthcare by respecting patient autonomy and empowering patients to improve their own health.
For years, traditional medical opinion flowed from doctor to patient. Patients accepted and even expected doctors to make decisions for them. This ideology, known as the paternalistic model, stemmed from the belief that a doctor’s knowledge and experience enabled them to make the best decisions for their patients. How could a patient possibly know what was best for them?
Paternalistic Model
Information → Physician Decision
Fast forward to the present where medical decision-making has entered a new era. Patients are now savvy consumers of healthcare. Googling symptoms on the internet has become the norm. Patients come prepared to discuss their condition and treatment options. Even older patients, who grew up when a doctor’s decision was gospel, come with their children who are ready to fire away questions and determined to understand every alternative.
This has challenged the medical establishment to reconsider the way decisions are made. New research in the past 10 years has identified a model known as shared-decision making where decisions are made together through two-way communication that transfers the knowledge and experience of the physician to the patient, as well as the values, preferences, and needs of the patient back to the physician. This allows the patient to make a choice rather than the physician dictating a decision.
Shared-Decision Making Model
Information exchange → Deliberation → Patient Choice
The impetus for shared-decision making started 21 years ago in May of 1998 at the Salzburg Global Seminar. During session 356, the forum discussed collaboration between patients and healthcare professionals with an emphasis on viewing healthcare through the “patient’s eyes.” It was there that the famous phrase, “nothing about me without me,” became a catalyst for the entire movement.
“Nothing about me without me.”
Valerie Billingham
The idea is simple in concept, allowing patients to make health decisions based on what matters most to them. Three components are necessary to insure optimal communication. These include clearly articulated evidence-based options, information tailored to each individual patient, and appropriate time for patients to communicate their goals and concerns regarding their care.
There are generally a number of reasonable treatment options for any given condition, even if one of those options is to simply do nothing. Choosing the best option comes down to a number of clinical and social factors that make each decision unique to individual patients. What’s most important is that the patient’s values guide the clinical decisions. As the model has had time to marinate, studies have found a number of benefits for shared-decision making compared to the traditional approach.
What’s most important is that the patient’s values guide the clinical decisions.
In a recent study published in April of this year, Blair Graham and colleagues looked at multiple papers written about patient experience in emergency departments. What they found was that “patients do not care how much a doctor knows until they know how much they care.” Think about that. If a patient doesn’t perceive a doctor to care about them, then everything else a doctor does is moot. Physicians must show compassion to allow trust. And one way to show compassion is to listen to patients and engage them in the decision making process.
Shared-decision making has been shown to increase both patient satisfaction and engagement across multiple specialties. If patients are more satisfied with their visit, engage with their care, and trust the physician, they are more likely to improve their health by following through with the chosen treatment plan. Karen Sepucha and colleagues studied over 500 patients in orthopedic clinics. They found that when patients were able to follow their preferences, they were not only more satisfied, but had better outcomes. Studies in other specialities have found similar results.
There have been multiple studies regarding the use of decision aids to support shared-decision making. Decision aids are evidence-based medical calculators that assess a patient’s risk for having a given condition. Examples include the risk of heart disease, severe head injury, stroke, and a number of other chronic diseases. In a Cochrane Review by Dawn Stacey and colleagues that included 31,043 patients, they found that “people exposed to decision aids feel more knowledgeable, better informed, and clearer about their values, and they probably have a more active role in decision making and more accurate risk perceptions.”
Marleen Kunneman and colleagues have used these decision aids to create “conversation aids” by outlining the potential risks in clear wording or pictographs. Sharing these visuals creates open dialogue between physicians and patients, ultimately increasing individualized care. One example cited in the article involves a patient with diabetes that was presented with a conversation aid to discuss future risks. Because of this discussion, weight loss became a major motivation for the patient that may not have been discussed if it weren’t for this shared-decision making moment.
“[Decision aids] can produce conversations in which the care is not just for people like this patient. Rather, by bringing the situation of this patient into sharp focus and detail, the care rendered is the best for this patient.”
Other decision aids can decrease testing and admissions by sharing concise easy-to-understand information that allows patients to make an informed choice. In a study by Erik Hess and colleagues, when low risk chest pain patients were presented with a conversation aid, many chose to be discharged from the emergency department and follow up with their primary doctors instead of an observation admission for stress testing. This represented a significant change from usual care.
Barriers to shared-decision making
It’s hard to argue that shared-decision making isn’t the “right” thing to do. But hospitals have cited multiple barriers to implementation. While shared-decision making promises to improve patient experience and decrease resource utilization leading to decreased cost of care, this could be conceived as a negative financial consequence to hospitals. It is also difficult for doctors to change culture from the paternalistic to a shared approach regarding medical decision-making. It can be especially difficult for doctors when the patient’s values do not match with their own, requiring the physician to accept a patient’s decision when it is not their recommendation.
However, given the shift in societal needs including a new technological landscape, and younger physicians with new mindsets, shared-decision making is gaining steam rapidly. Glyn Elwyn and colleagues, in Implementation Science, suggest that if shared-decision making, or as they call it collaboration and deliberation, can be achieved routinely, it can “lead to safer, more cost-effective healthcare, which in turn might result in reduced utilization rates and improved health outcomes.”
For physicians who are currently dealing with a burnout epidemic from a complex healthcare system and employing defensive medicine due high risk for lawsuit, shared-decision making can shift some responsibility from the clinician to the patient, allowing patients to not only make informed decisions but to be empowered to improve their health.
Patients should and do have as much responsibility for their own health as do the physicians caring for them.
By implementing a shared-decision making model, patients become team members in their care, which can ultimately improve their health. And isn’t that what it’s all about at the end of the day?
Shared-decision making maximizes patient-centered care to improve health through patient autonomy, engagement, and empowerment. And that’s a revolution that’s definitely worth fighting for.
What do you think about shared-decision making? Do patients have as much responsibility for their care as providers? Share your comments below…