I’ve been thinking about Gloria Dickerson’s Looking for the “Borderline Patient" post on t3Threads, and I can’t seem to get certain phrases out of my head. She describes her recent experience at an ER, and as a result of various preconceived notions and prejudices carried by her providers, she received subpar care. As she waited there, in the midst of her health crisis, she shared that, “All the appropriate words like ‘patient-centered care’ and ‘individualized-treatment’ waft like flimsy bubbles through the air. There is no substance, no actions, and no kindness to transform these words into reality.”
Don Berwick, former Administrator of the Centers for Medicare and Medicaid Services, describes a similar experience in his oft cited 2009 piece in Health Affairs, “What ‘Patient-Centered’ Should Mean: Confessions Of An Extremist.” His friend, fearful of her inability to understand and advocate for her own care, turns to him as a friend and physician to come along side her. He stands by her to advocate for care that feels human, comfortable, and in her control – something that’s centered on her, the patient. Unfortunately, Berwick reveals that their plan didn’t work. Just as it didn't for my friend Gloria.
I myself – white, educated, insured – have felt disenfranchised by the medical care I’ve received. I’m struck by the number of similar stories I hear. Then I think about the experiences of Gloria, where doctors and providers bring unfounded assumptions about her as a person and as a patient. As Berwick states, the needs (and wants) “of the patient did not come first—the habits and rules of the doctors and nurses did.” How much more truth does this statement hold when the patient is experiencing homelessness, substance use issues, or are in other circumstances that prompt providers to be even more patronizing, stigmatizing, and dismissive?
I believe most doctors want to serve their patients and put them first. But the simple fact that a term like ‘patient-centered care’ has been elevated as a novel and promising approach suggests otherwise. Recent policy efforts have taken a step forward to promote person-centered care, but given the stories I keep hearing, old habits and outdated rules in hospitals persist.
Recently, I’ve heard more and more talk about universal designs for care. Atul Gawande brought attention to checklists in medical care, pushing providers to assure that proper care is provided during every procedure, every time. But how do you make a checklist for talking with patients as people, listening to their wishes, understanding their needs, and being more human in the world? How do we leave our prejudices and assumptions at the door? Where is there a checklist to assure kindness and respect?
As Gloria shared, “within medical settings, the promise of Care for all is often unfulfilled. In these environments, hurried actions, chaos, and trauma occur frequently.” This is one of the lines that has troubled me most - that a trip to the hospital to get much needed help and medical expertise results in hopelessness. Yet I know this happens all too often.
I wish this were a post with an answer--with a tight argument laying out the problem and a final paragraph offering a solution. But I don’t know what that solution is. My hope is that as hospitals and clinics move toward patient-centered care models in the wake of health care reform, and as ideas around checklists and universal screenings and innovative approaches to care take hold, new provider habits will form. Through practice, a new way of relating to patients and being in the world will prevail.
But that may not be fast enough for so many of us.