Perhaps one of the earliest precursors to the Patient and Family Engagement movement is the decades-old push to bring shared decision making, or SDM, into common practice in healthcare settings. SDM is a process in which a patient is engaged in jointly making a healthcare decision with his or her clinician. The clinician shares information with the patient and/or family caregiver about the benefits and risks of all the available options while considering the patient’s expressed preferences and values as essential components to making the “right” decision for that patient at that time.
Unfortunately, this idealized version of decision making doesn’t occur nearly as often as it should. People often focus on content of the medical visit itself when thinking about SDM, but, as a process, rather than a single event, the possibility for SDM is at play even earlier. Before someone becomes a patient or even knows that he or she will have a healthcare decision to make, it is common for patients with new symptoms or a new diagnosis to turn to the Internet, family, and friends for advice. But health care providers can’t know what matters most to a patient, which is why a partnership between the patient and the clinician is critical.
Take Laura, for instance, a woman in her mid-40s with lower back pain. Before making a doctor’s appointment, she tells her mother and husband about her pain. They sympathize: almost everyone has had some back pain now and again. Laura looks online for information. A number of the links that come up include what look like reputable health websites. Some are highly technical. Others have support groups full of people with chronic back problems. They report years of misdiagnoses and trials of failed treatments. When she gets to her primary care doctor, he spends less than a minute on the issue; he tells her that it is difficult to know the exact cause of her pain, but it is likely musculoskeletal. He recommends over-the-counter painkillers, a stretching regimen, and prescription muscle relaxants. The next day, Laura tells her best friend, who is incensed that the doctor didn’t refer her to physical therapy or tell her about surgical options. Confused, Laura is unsure what to do, and continues searching for more remedies on her own.
In this all-too-common scenario, the patient is engaged, but she isn’t necessarily engaged in ways that are most efficient and useful to her. Laura seeks information, but she doesn’t have the experience or tools to appraise the information she finds from the Internet. Her doctor is taking a conservative and likely reasonable approach. Yet, because Laura is aware of other options, the lack of discussion around them leaves her feeling uneasy that she doesn’t have all the information she needs to improve her situation. The input from her best friend (a trusted, although not necessarily reliable, source) only enhances the sense of anxiety.
But this could have all gone differently. Laura’s clinician might have asked Laura several key questions about her pain, including how it affects her ability to engage in activities that are important to her and what her goals are for treatment. Laura can share all she’s learned from the Internet and friends, express her concerns, and contribute to an invaluable conversation about what actual options exist for her specific situation.
We should strive for patient engagement that is meaningful and that supports patient learning at all phases of “patienthood” – learning to ask the right questions, identify reputable information, and advocate for oneself – all of which are essential to Laura’s goal of freedom from her pain. However, she also wants to know that the choices she makes are likely to help her achieve that goal and that she’s made the best choice possible for her situation. Her engagement doesn’t begin when the doctor enters the room, and it doesn’t end when and if she is pain-free (and maybe not even then). Keeping these principles in mind is critical to making SDM a regular practice across health care.
Marla Clayman, PhD, is a Senior Researcher at AIR and an expert with the Center for Patient and Consumer Engagement.