In recent years, the notion of patient-centered care in the U.S. has become a rallying cry for reorienting care around a patient’s needs, to recognize (for really the first time) that respecting a patient’s perspective and needs, and actively engaging them, can lead to more effective outcomes.
The broad execution, however, has been a little disquieting, as it feels a bit more like lip service than a genuine reorientation. Patients are asked what matters to them and how they want to be involved, and providers do their best to provide choices that they deem viable, or give the patients some token tasks with which to engage. But the interaction is still fundamentally paternalistic, with the provider maintaining primary directive control – a little like the parent who does the science project, and has the child color the poster. Even the official definitions hint at an incomplete transition – the Institute of Medicine defines patient-centered care as “Providing care that is respectful of and responsive to individual patient preferences, needs, and values, and ensuring that patient values guide all clinical decisions.”
As I continue my research in to the Swedish healthcare system, my schedule included a visit with Dr. Inger Ekman, the director of the University of Gothenburg’s Center for Person-centered Care (GPCC). Noting the substitution of the word “person” for “patient”, I passed it off as a failed translation, or merely differing word choice. I couldn’t have been more wrong.
As my conversation unfolded with Dr. Ekman and her colleague, Dr. Karl Swedberg, a cardiologist and consultant to the GPCC, it became apparent that in “Person-centered Care” the single word substitution has some mighty consequences.
The GPCC defines person-centered care as a true partnership between patient and healthcare professionals, where a personal health plan is mutually developed, agreed upon, and executed.
Importantly, person-centered care begins with an ethical basis, recognizing that individuals (even when they are patients) have will, intention, responsibility, and capabilities. They have expertise in their own situational circumstances, and if enabled, can draw on their resources to direct their own care, not just to execute self-care tasks assigned to them by a physician. As a consequence, the patient is an equal partner in care, and the health care profession’s responsibilities include capturing the patient’s narrative and co-designing a personal health plan.
To reiterate, patients are seen as people who are experts, and can direct their own care as equal partners with their physicians. I can only imagine what would happen if I told my US-based physician exactly that at my next medical encounter.
Lest think you think these are just philosophical meanderings, the GPCC boasts a long list of research publications. Examples include reductions in hospitals stays (1/3 less) for chronic heart failure patients, and significant achievements in reduction of pain medication, pressure ulcers, hospital stays, and a 40% cost savings for elderly patients with hip fracture.
The work of Dr. Ekman’s team then is to not only continue building evidence, but to find sustainable methods for scaling the change, and to address infrastructural barriers. (For example, electronic patient records, aka EMR/EHRs aren’t structured to capture physician/patient agreements). I wonder if our circumstances in Austin might prove a suitable laboratory for experimentation.
Recognizing a patient as an agent of his or her own change has been a pleasant notion in the US for some time now. Perhaps it’s time we elevate them to a “person”, and get on with realizing the paradigm shift.