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The Doctors Who’ve Helped Patients Declare Their Independence

By MICHAEL MILLENSON

“A reform,” wrote a 19th-century British parliamentarian, “is a correction of abuses. A revolution is a transfer of power.”

As we celebrate the American Revolution, catalyzed by men who broke ranks with their peers to overthrow a power structure that seemed immutable, let’s also celebrate those physicians who broke with their peers and declared independence for American patients.

The British Empire believed it was exercising “benign colonialism.” Physicians, similarly, traditionally believed “that patients are only in need of caring custody,” observed psychiatrist Jay Katz in his 1984 book, The Silent World of Doctor and Patient. As a result, doctors thought it their moral duty to act as “rational agents” on the patient’s behalf.

The first spark to set that notion on fire came immediately after World War II with the publication of a book, The Common Sense Book of Baby and Child Care, that became a surprise best-seller. Dr. Benjamin McLane Spock, author and pediatrician, told parents that their common sense was often as reliable a guide as any doctor’s advice.

At the time, the American Medical Association’s Code of Medical Ethics advised physicians that “reasonable indulgence should be granted to the caprices of the sick.” Even though new moms were not ill, many pediatricians nonetheless deemed it entirely unreasonable for them to decide when to feed their babies. Instead, the doctors gave them given feeding schedules.

Spock, in contrast, reassured moms that centuries of human history showed they could decide for themselves when to feed their infant, doing so “when he seems hungry, irrespective of the hour.”

As I wrote in a history of participatory medicine, as those babies grew into adulthood, they “would use legal, economic and political pressure to undermine a medical culture that genuinely believed sharing too much information could be harmful.”

Along that journey, however, patients would acquire crucial help from doctors with the imagination and courage to think and to act outside the existing paradigm.

It wasn’t a quick process. As with the American Revolution, the abuses had to accumulate and resistance had to build. In 1970, a group of Boston feminists frustrated by a system that told them to listen to their doctor and not ask questions published a booklet entitled Women and Their Bodies. One year later, a court decision resulting from a malpractice case required physicians for the first time to specifically disclose the full risks of a procedure in language the patient could understand. A year after that, in 1973, what had become the Boston Women’s Health Collective published Our Bodies, Ourselves. The book has sold millions of copies.

Also in 1973, the American Hospital Association, facing the threat of Congressional action, adopted a “patient bill of rights” that contained such guarantees as patients having the right to know the names of all the physicians treating them!

Meanwhile, a handful of doctors started chipping away at the medical pedestal, with research uncovering common abuses of power like unnecessary tonsillectomies and hysterectomies. John Wennberg, working with colleagues who deployed nascent computer capabilities, demonstrated enormous variation in even the everyday practice of doctors in the same area seeing the same kind of patients. The “caprices” of judgment, it seemed, were not just a patient problem.

Peer-reviewed medical journals rejected Wennberg’s first article. The university where he worked pushed him to find a different employer. Physician colleagues shunned him. But as policymakers’ concern over soaring medical costs grew, Wennberg’s work went mainstream.

“Inevitably, once you start down the variation path and ask which rate is right, you come up against who’s making the decision and whose preferences are being reflected,” Wennberg later said. “That’s where the revolutionary aspects of what we’re doing really are.”

Following that logic, Wennberg and a fellow physician, Albert G. Mulley, Jr. – who had experienced the impact of practice variation when trying to treat his severe back pain – in 1989 formed the Foundation for Informed Medical Decision Making. Its mission was to develop and disseminate video programs enabling patients to become partners in their care.

It was Wennberg who recommended Katz’s book to me, with its extraordinary statements about doctor “fantasies” of “authoritarian control” and its blunt accusation that doctor’s reluctance to involve patients in jointly thinking about care choices constitutes psychological “abandonment.”

Like Wennberg, Paul Ellwood, who’d coined the term “health maintenance organization,” also tried to put shared decision-making into practice. In 1988, he called for adoption of “a technology of patient experience.” In 1995, he founded the Foundation for Accountability (FACCT), with tools such as “CompareYourCare” to help patients play a more active role in medical decisions.

Meanwhile, Harvey Picker, a successful businessman who said he wanted the health care system to treat patients as persons, not as “imbeciles or inventory,” joined with the Commonwealth Fund to support a group of researchers who promised to promote what Tom Delbanco, the lead physician, called “patient-centered care.” The group’s 1993 book, Through the Patient’s Eyes, helped popularize the concept, which a 2001 report by Institute of Medicine formally designated as one of six aims for the health care system

It was Delbanco who with colleagues in the first decade of the 21st century founded the “open notes” movement to give patients the right to see the doctor’s notes that were still a hidden part of the electronic health record. That push eventually led to legislation and regulations giving patients full access to all their EHR information.

But, of course, by then there was another doctor the public was increasingly turning to: “Dr. Google,” also known as “the Internet.” In 1996, Dr. Tom Ferguson, who had been medical editor of the Whole Earth Catalog, wrote a book entitled, Health Online: How to Find Health information, Support Groups, and Self-Help Communities in Cyberspace. Three years after his death in 2006, a group of physicians and patients would found the Society for Participatory Medicine, following the principles of an individual CNN would call the “George Washington of the empowered patient movement.”

None of these physician revolutionaries acted in a vacuum. While all faced resistance, they also had support from colleagues, physicians and non-physicians alike. Eventually, they were reinforced by patient activism, public opinion, legal requirements and, at a glacial pace, changes in the culture of medicine. Those changes, in turn, came about because of the work of physicians like Donald Berwick, Paul Batalden, Leana Wen, Victor Montori, Danny Sands and many others.

Still, it is those physicians who over the years repeatedly acted to free patients from “authoritarian control” – even if their language was more diplomatic – that blazed the path.

Michael L. Millenson is president of Health Quality Advisors LLC, and author of the classic Demanding Medical Excellence. He can be reached at michael@healthqualityadvisors.

It’s Time to Tango: Impatient With Progress on Patient-Physician Partnerships

The other day I came across this photo of a couple clasping each other in a dramatic tango on the cover of an old medical journal—a special issue from 1999 that was focused entirely on doctor-patient partnerships.  The tone and subjects of the articles, letters and editorials were identical to those written today on the topic: “it’s time for the paternalism of the relationship between doctors and patients to be transformed into a partnership;” “there are benefits to this change and dangers to maintaining the status quo;” “some doctors and patients resist the change and some embrace it: why?”

Two questions struck me as I impatiently scanned the articles from 12 years ago: First, why are these articles about doctor-patient partnerships still so relevant?  And second, why did the editor choose this cover image?

I’ve been mulling over these questions for a couple days and I think answer to the second question sheds light on the first.   Here are some thoughts about the relationship between patients and doctors (and nurse practitioners and other clinicians) evoked by that image of the two elegant people dancing together:

It takes two to tangoEver seen one guy doing the tango?  Nope.  Whatever he’s doing out there on the dance floor, that’s not tango.  Without both dancers, there is no tango. The reason my doctor and I come together is our shared purpose of curing my illness or easing my pain. We bring different skills, perspectives and needs to this interaction.  When in a partnership, I describe my symptoms and recount my history. I talk about my values and priorities. I say what I am able and willing to do for myself and what I am not.  My doctor has knowledge about my disease and experience treating it in people like me; she explains risks and trade-offs of different approaches and tailors her use of drugs, devices and procedures to meet my needs and my preferences. Both of us recognize that without the active commitment of the other we can’t reach our shared goal: to help me live as well as I can for as long as I can.Continue reading…

The Super Mobile Doctor Uses Smartphones and Tablets in Patient Care

Physicians who have adopted smartphones and tablet devices access online resources for health more than less mobile physicians. Furthermore, these “Super Mobile” doctors are using mobile platforms at the point of care.

Physicians adoption and use of mobile platforms in health will continue to grow, according to a survey from Quantia Communications, an online physician community. This poll was taken among 3,798 physician members of QuantiaMD’s community in May 2011. Thus, the sample is taken from the community’s 125,000 physicians who are already digitally-savvy doctors. QuantiaMD calls physicians with both mobile and tablet devices “Super Mobile” physicians.

The most common mobile devices among the Super Mobile doctors in QuantiaMD are iPhones, used by 59%; iPads, used by 29%; and, Android smartphones, used by 20% of the physicians surveyed. Blackberry devices are used by 14% of the doctors in the poll.

Just under one-half of these doctors plan to purchase a mobile device in 2011, notably an iPhone, an iPad, or an Android.

 

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Why Do Doctors Offer Credit Cards?

Yesterday’s Wall Street Journal (When Your Doctor Sells Credit Cards) documented the growth in credit cards issued to finance elective procedures such as LASIK, plastic surgery and dental implants. The article covered the usual points but missed one important but little-known aspect of the industry.

Briefly, physicians offer the cards for procedures not covered by insurance. The cards have a zero percent interest rate and no fees, usually for the first 12 months. After that the interest rates spike and to make matters worse customers are also charged retroactive interest on their first year’s balance. Ouch! The article details the pitfalls you’d expect from cards like these, and of course there have been some abuses.

A card company spokesman quoted in the article says, “the vast majority of account holders pay off their balances before the promotion ends.” That statement doesn’t surprise me, because most people who have these elective procedures are relatively well off.

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Hospital-Physician Mergers: All Is Not Well

The Disease Management Care Blog, believing that the ultimate end game will be an historic insurer-physician alignment, checked out an “Issue Brief” on the Rising Employment of Physicians, courtesy of the Center for Studying Health Center Change (hat-tip to the folks at KHN).  The authors interviewed hospital, health plan and other provider executives from 12 representative locations around the country and came away with some telling impressions on what’s happening in the hospital market place.

The authors didn’t find much in the way of insurer-physician alliances, but they sure found evidence of increasing employment of physicians by hospitals.  Why?  For the docs, it’s a perfect storm of declining reimbursement, growing overhead, increasing insurer hassles, the cost of implementing an EHR and the high premium for liability (malpractice) insurance.  In addition, younger physicians are attracted to the prospect of a better work-life balance that comes with steady employment.  For the hospitals, it’s the opportunity consolidate market-power, maintain a referral base and do away with the revenue-stealing physicians’ in-office and surgi-center procedures.

Yet, while economics are driving docs into the arms of the hospitals, the authors cautioned that all is not well when it comes to 1) coordination of care/quality, 2) costs and 3) access to care.

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Medicine is Child’s Play: Where’s Waldo, Spot the Difference and Whack-a-Mole

By HANS DUVEFELT, MD

I started writing a post a few days ago about the challenge of quickly finding what you’re looking for in a medical record. As I came back to my draft this morning, it struck me how much this felt like some of the games my children played when they were young. This got me thinking…

Where’s Waldo: Finding what’s important in the medical record

I did a peer review once of an office note about an elderly man with a low grade fever. The past medical history was all there, several prior laboratory and imaging tests were imported and there was a long narrative section that blended active medical problems and ongoing specialist relationships. There was also a lengthy Review of Systems under its own heading.

In what would probably have printed out over ten pages long, the final diagnosis was “Urinary tract infection” and the man was prescribed antibiotics.

This final diagnosis seemed to come out of left field. I didn’t recall reading anything about urinary symptoms, urinalysis, an abdominal exam or pain on percussion over the back.

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Grassley Criticizes Removal of Doctor Discipline Data

U.S. Sen. Charles Grassley (R-Iowa) sent a letter today to the Health Resources and Services Administration, criticizing its decision to remove a public version of the National Practitioner Data Bank, which has helped reporters and researchers to expose serious gaps in the oversight of physicians.

“Shutting down public access to the data bank undermines the critical mission of identifying inefficiencies within our health care system – particularly at the expense of Medicare and Medicaid beneficiaries,” Grassley wrote to HRSA Administrator Mary Wakefield. “More transparency serves the public interest.”

Grassley, ranking Republican on the Senate Judiciary Committee, continued: “Generally speaking, except in cases of national security, the public’s business ought to be public. Providers receive billions of dollars in state and federal tax dollars to serve Medicare and Medicaid beneficiaries. Accountability requires tracking how the money is spent.”

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Money, Medicine and Ethics

The American College of Physicians has published their updated manual on ethics for physicians and the following passage is causing quite a stir:

Physicians have a responsibility to practice effective and efficient health care and to use health care resources responsibly. Parsimonious care that utilizes the most efficient means to effectively diagnose a condition and treat a patient respects the need to use resources wisely and to help ensure that resources are equitably available.

On the right, American Enterprise Institute scholar Scott Gottlieb writes “Parsimonious, to me, implies an element of stinginess, and stinginess implies an element of subterfuge.” (Quote of the Day in American Health Line.)

On the left, Aaron Carroll writes:

I would fight tooth and nail to get anything — and I mean anything — to save [his own child]. I’d do it even if it cost a fortune and might not work. That’s why I don’t think you should leave these kinds of decisions up to the individual. Every single person feels the way I do about every single person they love, and no one will ever be able to say no. That’s human.

Similarly, I don’t think that it’s necessarily fair to make it a physician’s responsibility. I also want my child’s doctor to fight tooth and nail to get anything that might save my child. Many times, physicians have long-standing relationships with patients. Asking them to divorce themselves from the very human feelings that compel them to do anything that might help their patients is not something that I think will necessarily improve the practice of medicine. They also should be human.

So whose job is it? Well, mine for instance. That’s what I do as a health services researcher. That’s what policy makers should also do….

That’s a roundabout way of saying that only the government can ration care the right way. Here is Don Taylor’s (Incidental Economist) take on the subject.

My view: people in health care have become so completely immersed in the idea of third-party payment that they have completely lost sight of the whole idea of agency.

[youtube]http://www.youtube.com/watch?v=BQMI7TksYo0&feature=player_embedded[/youtube]

This game of life I play
Living and dying with the choices I made

Can you imagine a lawyer discussing the prospects of launching a lawsuit without bringing up the matter of cost? What about an architect submitting plans for a building but completely ignoring what it would cost to build it?  Outside of medicine, can you imagine any professional anywhere discussing any project with a client and pretending that money doesn’t matter? Of course not.

Then what is so special about medicine? Answer: the field has been completely corrupted by the idea that (a) patients should never be in a position to choose between health benefits and monetary cost, (b) doctors shouldn’t have to think about such tradeoffs either, (c) in order to insulate the patient from having to choose between health care and other uses of money, third-party payers should pay all the medical bills and (d) since no one else is going to think about what anything costs, the third-party payer is the only entity left to decide which services are worthwhile and which ones aren’t.

To appreciate how doctors could do the same thing other professionals do in advising patients on how to spend their own money, take a look at the graphic below. These numbers are several years old and there may be more recent studies, but the graphic will serve our heuristic purpose. Armed with this information, what would a responsible doctor tell her patient about Pap smears and how often the patient should get them?

Source: Tammy O. Tengs et al., “Five Hundred Lifesaving Interventions and Their Cost-Effectiveness,” Risk Analysis, June 1995.

 

Note that getting a Pap smear every four years (versus never getting one) costs $12,000 per year of life saved, when averaged over the whole population. What the responsible doctor should say is, “In the risk avoidance business, this is a really good buy. Based on choices people like you make in other walks of life, this is a good decision. This type of risk reduction is well worth what it costs.”

What about getting the test every three years (versus every four) or every two years (versus every three)? Here the doctor should say, “Now we are moving toward the upper boundary of what most other people are willing to spend to avoid various kinds of risks. So at this point, serious thought needs to be given to whether the test is really worth what it cost.”

How about getting the test done every year (versus every two years)? Here the responsible doctor will say, “This is definitely a bad buy (unless there is some specific indication). The cost of an annual Pap smear in relation to the amount of risk reduction achieved is way outside the range of choices most people make with respect to other risks.”

Notice what is going on here. The responsible doctor, functioning as an agent of a patient who is not familiar with the medical literature and who is not skilled at evaluating risks or trading off risk reduction for other uses of money, advises her patient in these matters. She helps her patient manage both her health and her money — because both are important.

When Dr. Carroll says “I’d do it even if it cost a fortune and might not work,” I am sure he is being sincere. But I am equally sure that is not how he normally makes decisions. It is in fact easy to spend a fortune to avoid small-probability events. The EPA makes the private sector do it every day. But if an ordinary family tried that, they would end up spending their entire income avoiding trivial risks. And that is not what normal people do.

Here is another example of a money-is-no-object-no-matter-how-improbable-the-prospects-if-life-and-death-are-at-sake choice. This is Zeke Emanuel, writing in The New York Times the other day:

Proton beam therapy is a kind of radiation used to treat cancers. The particles are made of atomic nuclei rather than the usual X-rays, and theoretically can be focused more precisely on cancerous tissue, minimizing the danger to healthy tissue surrounding it. But the machines are tremendously expensive, requiring a particle accelerator encased in a football-field-size building with concrete walls. As a result, Medicare will pay around $50,000 for proton beam therapy for a patient with prostate cancer, roughly twice as much as it would if the patient received another type of radiation.

Emanuel claims there is no evidence the treatment works for prostate cancer — so the therapy is a waste of $25,000. Is he right? I don’t know. If you’re paying the extra $25,000 out of your own pocket, listen to what the doctors at Mayo have to say (in favor of its use) and then listen to what Emanuel has to say and make up your own mind.

Bottom line: helping patients manage their health dollars as well as their health care should be what doctoring is all about.

John C. Goodman, PhD, is president and CEO of the National Center for Policy Analysis. He is also the Kellye Wright Fellow in health care. His Health Policy Blog is considered among the top conservative health care blogs where health care problems are discussed by top health policy experts from all sides of the political spectrum.

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