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.
Increasingly complex health systems, in which difficult and important treatment decisions must be made, require patients and families to be well-informed about their diagnosis or condition, its specific treatments, and their individual care plan. According to research by Judith Hibbard and many others, patients who actively participate in managing their care have better health outcomes.
Patient activation can even be measured with a tool, the Patient Activation Measure, developed by Hibbard and her colleagues in the earlier part of this decade. The short-form of the tool includes 13 questions, which clinicians can use to assess patient understanding of their illness. Questions to the patient and caregiver address topics such as understanding why certain medications have been prescribed, whether lifestyle changes might help and ways that self-treatment can help. The PAM categorizes patients in one of four levels, with the first being the least activated patient, who does not have the confidence to engage in his or her own care and who is a passive recipient of that care; at the highest level, patients understand and manage their illness and maintain their health status despite stresses and crises.
The idea that patients should be active participants in their care is not new. The 2001 Institute of Medicine report, Crossing the Quality Chasm: A New Health System for the 21st Century, states, “Care for the chronically ill needs to be a collaborative, multidisciplinary process. Effective methods of communication, both among caregivers and between caregivers and patients, are critical to providing high-quality care. Personal health information must accompany patients as they transition from home to clinical office setting to nursing home and back.”
In our current health care environment, in which patients are sometimes discharged “quicker and sicker,” they are expected to be more in charge—activated—than ever. They need to make and keep follow-up doctor appointments, manage complex medication regimens, organize home health care and visiting nurse appointments, store powerful medications, and track, monitor, and report changes in their health status. It’s a tough order, especially for people like my father, who do not know or understand the health care system, and find its workings difficult to navigate. Many good websites point patients, families, and health care providers to useful resources and strategies, among them http://www.informedmedicaldecisions.org/, http://www.insigniahealth.com/ and http://www.caretransitions.org/ .
Ultimately, knowing the strain of my father’s strep infection was not going to change its treatment, and that may have been what the doctor meant. But in dismissing my sister’s concern, he was dismissing what is increasingly seen as essential to good health care. My sister is not one to be daunted by being dismissed, but many patients and family members would accept the put-down and never again ask a question. Knowledge, truly, is power, especially for people who are sick, vulnerable, and afraid. Being supported to understand and to manage the situation over time certainly can help patients and families to cope with what is happening and to prepare for and respond to it. In the end, the answer to the impertinent doctor is: “It all matters,” if only to establish a baseline mutual respect that encourages conversation about a diagnosis and a plan of care. Informed patients and families make for powerful and effective medicine.