Partnership to Improve Patient Care

We've all read the quotes about how the new CMS Administrator Don Berwick thinks we should  "ration with our eyes open" and is romantic about the U.K.'s National Institute for Health and Clinical Excellence, or NICE. But, agree or disagree with the way he was appointed, there’s another side to Berwick worth looking at. It is a side that is zealously devoted to putting the patient at the center of health care. Dr. Berwick describes this devotion poignantly and powerfully in several articles over the past eight years, including a May 2009 Health Affairs article "What 'Patient-Centered' Should Mean: Confessions of an Extremist," and "Escape Fire: Lessons for the Future of Health Care.”

One of the things that make these articles well worth reading are the deeply personal stories he tells of his own experiences as a caregiver, which included seeing first hand the fear and loss of control that patients experience and lack of patient-centeredness that too often is the norm and not the exception in our health care delivery systems. These experiences, by his own account, "radicalized" him about the importance of putting patients at the absolute center of health care and giving them full and total control of their health care decisions.  In the Health Affairs article, Berwick proposes as new definition of "patient-centered care": "The experience (to the extent the informed, individual patient desires it) of transparency, individualization, recognition, respect, dignity, and choice in all matters, without exception, related to one's person, circumstances, and relationships in health care."  
 
When this is the starting point, it affects every aspect of patient care and the delivery systems that support it, including evidence-based medicine. "Leaving choice ultimately up to the patient and family means that evidence-based medicine sometimes must take a back seat," Berwick concludes. "   

In "Escape Fire," Berwick states that "interaction is not the price of care; it is care, itself."

Berwick's stories resonate because all of us, directly or indirectly, have experienced at least some of the problems he describes. As a patient myself who has had to deal with epilepsy for over 50 years, I have seen the best and worst of our health care system—doctors who know me, follow my progress carefully, and conscientiously work with me to fine tune the care so I can manage my condition; and a system that can at times treat me like a number, lose track of my treatment history, and fail to provide me the care I need, when I need it.
 
“As patients  and caregivers, we see the best and worst of our health care system—doctors  who are skilled and conscientious and who work together to follow  the patient across care transitions, and who conscientiously work with  each person  to fine tune the care so they can  deliver exactly the care that that person needs and wants; and a system that can at times treat patients like numbers, lose track of  treatment history, and fail to provide  safe, effective, evidence-based care.”

Dr. Berwick's proposed solutions have dramatic implications for patients, in no small part because he is so passionately devoted to our cause. In regards to Medicare, the single most important issue for us as patients may be how Berwick and his agency resolve his support for rationing "with our eyes open" and his call to "firmly vest in patients and families control over decisions about care in all its aspects." I'm putting my money on solutions that put patients at the center of health care.