I'm a big fan of Don Berwick, the current administrator of the Centers for Medicare and Medicaid Services who last week was on Capitol Hill being grilled by a congressional committee on his views. Although Dr. Berwick (a pediatrician by training) made his reputation in the area of improving patient safety and quality, his views on patient-centered care are what I admire most.
Some may think that the concept of health care being "patient centered" is so obvious that it shouldn't need to be stated. Yet the term "patient centered" is a surprisingly recent idea in a health system that has long focused on treating discrete diseases and organ systems (e.g. the heart, the lungs, the kidneys, etc.) rather than whole patients. In prestigious academic hospitals, there has traditionally been a distinct pecking order: attending physicians at the top, followed by fellows, residents, nurses, students and other trainees, and finally, at the very bottom, the patients themselves.
Patient safety advocate Sorrel King, whose one-year old daughter died in Johns Hopkins Children's Center due to preventable medical errors, wrote in her poignant 2009 memoir Josie's Story that being in awe of the technical skills of her daughter's physicians made her reluctant to challenge questionable medical decisions until it was too late. She and her foundation have subsequently encouraged hospitals to create rapid response teams that could be triggered by anyone in the medical hierarchy who had concerns about a patient's condition, including - and especially - patients and family members.
In an article in the journal Health Affairs, Dr. Berwick related an episode during which a close friend who was having chest pain requested that he accompany her to the cardiac catheterization lab for emotional support and to help explain the procedure's results afterwards. The nurse and cardiologist both rejected his friend's request, giving no explanation other than "it's just not possible." (And I remember, with dismay, hearing these exact words from a physician when I wanted to accompany my newborn daughter to the hospital nursery for her first bath.)
In a speech delivered to last year's graduating class at Yale Medical School, Dr. Berwick made a passionate argument for physicians to override our tendency to allow mindless regulations to override a patient’s reasonable preferences:
Of course, it isn’t really "someone" at all. We don’t even know who, or what it is. Its voice sounds rational. Its words are these: "It is our policy," "It’s against the rule," "It would be a problem," and even, incredibly, "It is in your own best interest." What is irrational is not those phrases; they seem to make sense. What is irrational is what follows those phrases, in ellipsis, unsaid: "It is our policy … that you cannot hold your husband’s hand." "It is against the rules … to let you see this or to let you know this." "It would be a problem … if we treated you on your own terms, not ours." "It is in your own best interest … to miss your daughter’s moment of birth." This is the voice of power; and power does not always think the whole thing through.
Thus far, Dr. Berwick’s confirmation hearings have focused on his views about health care rationing and his exaggerated “love” for the United Kingdom’s National Health Service. His inquisitors are missing all the important questions. They should be asking, “What are your views on patient-centered health care?” “What have been your experiences with making patients feel respected and listened to?” "How do we make health care more responsive to the needs and wishes of patients and their families?" But they aren't doing that. So it is unlikely that Dr. Berwick will be permanently confirmed as CMS administrator, and once again, our country will get exactly the health care that it deserves.