By Janice Lynch Schuster. A few days into my 68-year old father’s hospitalization for sepsis, his doctors determined the strain of bacteria that plagued him: streptococcus. My sister was there when they came in with this part of the diagnosis; she has a doctorate in engineering with a focus on the human heart (that engineering marvel), and she likes details.
“What strain?” she asked the doctor. “A, B, or C?”
His reply: “What does it matter to you?”
This exchange was, admittedly, not typical for this hospital and this doctor, so I’ll forgive him some. And the strain did not, in fact, matter in the course of his treatment. But the routine arrogance found in doctors and hospitals does not serve patients and family members well. Knowing the particulars of what ails you often matters a great deal, especially for patients like my father, hospitalized and on the verge of being discharged home or to some other setting, but not yet “well.”
Knowing this kind of information—the details of your diagnosis and likely course, and how your care should happen at every step along the way—is critical to enabling patients and family members to function as respected participants in care, including ensuring safe transitions from one care setting to another. Much recent research indicates that those transitions are fraught with errors and complications. Patients often do not know or understand what is happening to them and critical information is not transferred from one provider to another, and that costly (and sometimes deadly) rehospitalizations are the norm for some 20 percent of Medicare beneficiaries who have been hospitalized.
Patients and their family caregivers are central actors in making transitions safer. Indeed, since they are the only constant in the transition from one setting to another, patients and caregivers must increasingly assume the role of knowing as much as they can about what is going on with their care. Experts in the field refer to this kind of involvement as “patient activation” or “engagement,” which occurs when patients have the knowledge, skills, beliefs and confidence to manage their own health care processes and behaviors. (more…)