I’m embarrassed…and appalled!!
I’ve carried an MD degree proudly for over 40 years. Being of service to those in my community in improving their health has been a badge of pride I’ve worn proudly. But for the 26+ years of practice, and my 11+ years at ICSI, I’ve had the sense we could, and must, do better…. especially as the world around us has changed drastically.
In my most recent time at ICSI, I’ve learned more about patient engagement, activation, empowerment, and how we need to move our patients from passive consumers of care to partners in maintaining their health. We glibly use the term “patient-centered care” from the IOM report, Crossing the Quality Chasm, as a beacon for our work.
But while our profession espouses those values, I fear we have much to do, and a long way to go to truly engage our patients/citizens as partners in their health management. As we strive to understand the need to “activate” our patients, and provide the resources and support for them to become active participants in their health, there are many challenges to address in our traditionally paternalistic delivery of health care.
My lovely wife, Robin, recently had eight of her close friends from high school spend a weekend at our home, catching up on their journeys in life. I was humbled and impressed by the closeness and mutual affection of these women, continuing a relationship that originated in their childhood.
One of her classmates, a bright, motivated, active professional, had been diagnosed with breast cancer over 20 years ago, and “cured” with a return to an active, successful life style–eating correctly, exercising regularly, doing all the right things. Until…. she began to experience right hip pain several months ago, which became excruciating. Initially told she had arthritis, and inexplicably being prescribed Oxycodone and Fentanyl to manage the pain, within 24 hours she was hospitalized, diagnosed with recurrent metastatic breast cancer, with a pathologic fracture of the head of the right femur into the hip joint, and staring hip replacement, rehabilitation, radiation therapy, and chemotherapy in the face. It reminds us how quickly our lives can change, and why we should cherish each and every day we have.
While at our house, this activated, enlightened, engaged patient outlined her story of recent care at a large, well-known and reputable health care institution. I was embarrassed and appalled. As she dealt with her rehab, her need for intensive therapies, and the unexpected complications that arose, I felt a sense of sadness, which evolved into frustration, and then to anger. For she had been forced, in a time of utmost personal distress, to assume responsibilities which should have been, and could have been, supported by us in the health care system.
As she explained her need to personally call insurance companies, pursue her surgeon and oncologist to obtain answers to questions, all at the same time she is trying to put her personal and professional life together again, I felt extreme embarrassment that we as a profession and a “system” have placed such a burden totally on her shoulders. Because she works alongside the health care system, she had knowledge and resources, as well as an incredible personal resolve, to tackle the repeated obstacles and barriers to getting the care she deserved. And I wondered–if this was what someone who had the knowledge and resolve to fight the inefficiencies thrown at her by our disorganized, fragmented care system, in one of our most respected health care organizations, what does that say about what we’re forcing others to do? And I silently wept, and felt an overwhelming sense of sadness, but increasing resolve.
As I share with her and several of her friends my passion and interest in the area of engagement, I received an acknowledgement, and encouragement, to continue my focus, my challenges to the present cacophony of supposed support. We are at a critical time in our country in addressing health care. The need to truly engage our patients, to provide them with the resources to be partners in care, to understand the world in which they live (which is not in our clinics and hospitals) is critical.
It is often said that inspiration comes from unusual places. It is likely that my already strong resolve was enhanced by a random conversation in our living room, and the personal embarrassment I felt for the journey we were forcing on this patient–no, not this patient, my wife’s friend and colleague–and it became personal. Thank you for reigniting my passion…and inflaming my indignation. There’s work to do….