Patient engagement is often described in the context of shared decision-making or health literacy. Engaged patients educate themselves, ask questions and make informed choices: Which approach to cancer treatment is right for me? How can I change my diet to improve my health? What do I need to know to ensure I’m managing my parents’ care effectively? How do I access my electronic health records?
It’s easiest to seek education, contribute to conversations, and make decisions when issues and choices are well defined. Seeking clarity and closure is a natural impulse; certainty is reassuring. But reality does not always cooperate, often presenting subtle signs, imperfect feedback and difficult decisions. The realms of health and medicine include lots of uncertainty, which Arabella Simpkin, MD, calls the “greyscale spaces,” where things are not always as clear as patients and physicians would like.
The traditional culture of medicine has been reluctant to acknowledge uncertainty, preferring to emphasize competence and knowledge. Patients and family members have supported that culture, hoping for clear guidance from their physicians and definitive recovery from whatever ails them. The culture of medicine is evolving; among recent changes is the beginning of a new openness about the limits of certainty. In some circles, including a diverse group of stakeholders working on diagnostic safety, uncertainty is being discussed as a natural part of patient care.
There is hope that acknowledging what they don’t know or understand will help protect physicians from burnout and even improve their relationships with their patients. Being able to accept that things—sometimes pivotal things—are uncertain may also benefit patients and their family members, although that is asking a lot. That new relationship asks patients and family members to operate with levels of trust and patience that may be difficult to maintain in stressful circumstances. Overall, our fast-paced society is focused on clear results and often does not appreciate the value of greyscale spaces.
In the New England Journal of Medicine, Simpkin and co-author Richard Schwartzstein point out that self-aware physicians and patients already know they live with uncertainty; especially in medicine, our culture makes that difficult to admit. They argue that everyone will benefit from a more nuanced, honest and accepting attitude:
We can then teach physicians specifically how to communicate scientific uncertainty, which is essential if patients are to truly share in decision making, and we can reduce everyone’s discomfort by reframing certainty as a surmountable challenge rather than as a threat.
That last point is important. Uncertainty is usually considered to be a bad thing and is often accompanied by fear and dread. But those who are able to be comfortable and patient with uncertainty may be rewarded with better outcomes. For example, jumping to a conclusion—referred to as “premature closure” in diagnosis—often leads to diagnostic error. It’s easy to see how premature closure could result from discomfort with uncertainty on the part of the patient or physician or both. Physicians who are able to coach and support patients through periods of uncertainty may deliver more accurate, effective care in the long run.
I overheard one physician at the recent 10th annual Diagnostic Error in Medicine conference say that Simpkin’s keynote, “Embracing Uncertainty in Medicine,” was for him the most important presentation of the three-day event. In discussion at the conference, some physicians commented that being uncertain about a diagnosis doesn’t necessarily mean there is nothing to be done for the patient. Some patients may in fact be more invested in knowing about next steps—having a course of action—than in the final diagnosis.
As evidenced by the range of topics covered in this blog, effects that stem from patients becoming engaged are far-reaching. One of those effects may be a new attitude about that which we—patients and physicians—don’t yet understand. If we allow ourselves to embrace the uncertainty for a time, we may all be better off.
Thanks for this one. It’s a hot topic for PCORI’s Communication and Dissemination Advisory Panel that Lauren McCormack chairs and I co-chair. I think that most choices in life and healthcare are uncertain. Certainty isn’t researched. One of the reasons I focus on ‘what works’ for individuals is that research can only say what might work or is likely to work. But did it? Have you tried something that worked for you? Might it work for someone else. It would be nice if we could keep track and feed that back into research.