I was surprised when Don Berwick was nominated CMS Administrator. I thought of him as a soft-spoken academic who was trying to do some good things in health care around the margins. If I had any complaint about him it was that he was pretty pie-in-the-sky and many of his ideas were unproven.
I certainly didn’t think of him as someone who could effectively manage one of the largest and most complex public agencies on the face of the earth, nor as a political partisan who would take no prisoners to ram through an agenda.
I thought he would be better as a policy consultant to CMS, not as the hands-on Administrator. One year later I still think I was right about this.
Robert Goldberg writes an analysis about all this in the American Spectator that has it about right, though he is more hard-edged than I would be. Goldberg’s piece is a rebuttal to an article in the Washington Post that Goldberg accurately describes as a puff piece on Berwick.
I expect Berwick himself is surprised to be cast as such a polarizing figure, and I have to wonder why he took the job in the first place. If anything, Berwick’s great flaw is that he has always tried too hard to be likeable. Even his laudatory remarks about the UK’s National Health Service likely came from an effort to ingratiate himself to his audience rather than a deep-seated commitment to socialized health care.
While cleaning out some old files I came across a booklet he authored in 2002 that might shed some light on his views. It is called “Escape Fire,” and is based on a speech he gave in 1999 at the National Forum on Quality Improvement in Health Care.
It is a very fine little book that describes in great detail the experience he and his wife Ann had when she was stricken with a rare neurological condition. He is almost embarrassed to be using this experience in a public policy discussion. He writes:
Our ordeal has been enormously painful and intensely private, and it is by no means over yet. To use it for any public purpose, even to speak about it, risks crossing a boundary of propriety and confidentiality that ought not to be crossed. And yet, this has been the formative experience for me overall in the past year—the experience of the decade—and it resonates so thoroughly with the mission of improving health care that not to learn from it also seems wrong.
I won’t take the space here to quote extensively from the text, other than to summarize that in spite of many examples of excellent care delivered by caring physicians and nurses, the systemic experience was horrific. He writes that medication errors were not rare, they were the norm. Different doctors would insist on trying contradictory treatments. Things were tried and failed, only to be tried again a few days later as if they were new ideas. His wife had to tell and retell the story of her illness every time a new physician was involved. MRIs scans were repeated every time she was transferred to a different hospital. They were charged for drugs that were never delivered.
You get the drift. Anyone who has experienced a major illness will find all this familiar. Patients are treated like slabs of meat, rather than the “customer is king” approach of most other industries. Patients feel alone, confused, scared, and disrespected. My heart breaks for the Berwicks and any other families who experience this.
But the question is what to do about it? Berwick takes a systems design approach, calling for three elements: access, science, and relationships.
Access. He writes:
The current system of care embeds processes and assumptions that ration, limit, and control access. To get help requires appointments, permission, authorization, waiting, forms, and procedures to which the person in need must bend their need. In the current system, first we allocate the supply, and then we experience the demand.
The access we need to create is access to help and healing, and that does not always mean—in fact, I think it rarely means—reliance on face-to-face meetings between patients, doctors, and nurses. Tackled well, I believe that this new framework will gradually reveal that half or more of our encounters—maybe as many as 80 percent of them—are neither wanted by patients nor deeply believed in by professionals. This is an example of a problem so big that we have trouble seeing it. The health care encounter as a face-to-face visit is a dinosaur.
The alternatives to visits in the escape fire are many: self-care strongly supported and unequivocally encouraged; group visits of patients with like needs, with or without professionals involved; Internet use for access to scientific and popular information; e-mail care between patients and clinicians; and well-managed chat rooms, electronic and real, for patients and significant others who face common challenges.
Oddly enough, he adds:
The medical record properly belongs to the patient, not to the care system. It must become an open book to the patient, available without restriction, hesitation, or suspicion.
This is certainly at odds with his current role as CMS Administrator.
On science he writes:
At its best, the help we offer is based in knowledge. When care matches knowledge, it is most reliable. When care does not match knowledge, we fail to help, either by omission (failing to do what would help) or by waste (doing what cannot help).
But he adds:
I would place a commitment to excellence—standardization to the best-known method—above clinician autonomy as a rule for care. A scientific system of care would guarantee that the best-known approach is the standard approach.
Finally, he emphasizes “relationships” or “interactions.”
While the first element, access, encourages us to consider how people get to the help they need, and the second, science, asks us to consider how we can assure that the best knowledge informs action, the interactions element challenges our current notions of the very nature of help, itself. It raises the question of what, in the end, we are spending $1 trillion to produce. It is about our purposes.
In the current framework, health care tends to regard human interactions more as a toll or price than as a goal or product. The system tends to act as if interactions were the burden it must bear so that it can deliver the care. As a result, behaviors and systems emerge to control or limit interactions—as if they were a form of waste—and to regard commitment to interaction as a secondary issue in training, resource allocation, hiring, firing, and incentive.
Here, we know that interaction is not the price of care; it is care, itself. A patient with a question presents an opportunity, not a burden. Time spent in building patients’ skills in self-care is not a way to shift care, it is care. Access to information is desirable not because it improves care or supports compliance, but because it is a form of care.
Now here is a thought that may astound you (it did me). Berwick writes:
Interactions … begin with this assumption: The patient is the source of all control. We act only when the patient grants that privilege, each time.
Control begins in the hands of the people we serve. If we caregivers wish to take it, we must ask. If a patient denies control, then we must accept their will as a matter of right. We are not hosts in our organizations so much as we are guests in our patients’ lives.
Now this is quite a smorgasbord of ideas. I get the feeling that he doesn’t really mean the bit about the patient being in control. That is just a reaction from his personal experience, which was still pretty fresh.
All of the rest of it suggests that the patient is not in control at all. Patients like face-to-face visits. They are not researchers like Berwick and friends, who are comfortable reading scientific journals on-line. They like to look people in the eye and ask questions, even if it may not be very efficient.
Similarly, patients are not likely to appreciate being confined to what researchers think is a “standardized” approach. I wonder just how “standard” his wife’s care was or could have been. It was a rare condition that people were not sure how to treat. But many, many conditions are rare, or at least the collection of conditions, resources, and comorbidities are often unique to the patient. The patient will demand customized, not standardized, treatment.
Finally, he completely misses the idea that “he who pays the piper picks the tune.” The only way to ensure patient control over the care is to ensure patient control over the money. Berwick just can’t get his head around that. He still wants “the system” to allocate the money (i.e. “Third-Party Payment,”) but to do so in a benevolent manner. The current push for ACOs is predicated on “voluntary participation,” but it is “voluntary” only for providers, not for patients. Patients will be assigned to an ACO without their permission of knowledge.
So, in spite of the happy talk of patient control, Berwick’s dream system eliminates face time between patient and physician, requires physicians to practice only “standardized” care, and “assigns” patients to the program without their knowledge. He is taking an unaccountable, inefficient system of care and making it even less accountable and efficient through the dramatic growth of bureaucracy.
For my money, I would prefer a concierge Doc who will work as my advocate as I try to deal with a scary and confusing health care system.