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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 Truly Share the Chemo Decision With Cancer Patients

You (or a loved one) has cancer, but the latest round of chemotherapy has unfortunately had only a modest impact. While you’re acutely aware of the “wretchedness of life that becomes worn to the nub by [ chemotherapy’s] adverse effects” you’re also a fighter.

How do you decide whether to continue with chemo?

The answer to that question is both intimately personal and inextricably tied to health policy. Cancer is the leading cause of death among those aged 60 to 79, and it is the second leading cause of death for all Americans. With expenditures on cancer care expected to top $158 billion (in 2010 dollars) by 2020, the financial and emotional stakes are both high.

How do you decide whether to continue with chemo?

The answer to that question is both intimately personal and inextricably tied to health policy. Cancer is the leading cause of death among those aged 60 to 79, and it is the second leading cause of death for all Americans. With expenditures on cancer care expected to top $158 billion (in 2010 dollars) by 2020, the financial and emotional stakes are both high.

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The Levers We Have at Our Disposal to Reduce Spending on High Cost Claimants

CindySweb

A new report out from the American Health Policy Institute and Leavitt Partners further quantifies what we already know: a handful of employees are responsible for the bulk of employers’ health care spending. The new report documented that among 26 large employers, 1.2 percent of employees are high cost claimants who comprise 31 percent of total health care spending. Interestingly enough, the report was released on the heels of news yet again that high deductible health plans continue to be more popular than ever as a strategy for employers to control costs, with employee cost sharing expected to rise yet again this year.

And yet high deductible health plans may do more to bend the cost trend for healthy employees by reducing spending on items like pharmaceuticals and lab testing but not on inpatient care.

The least heathy employees quickly blow through their deductible, and their health issues are so acute and their bills so large, they don’t shop around for care. So what is a large employer or any purchaser concerned about these high cost claimants to do?

Consumerism in how we typically think of the concept doesn’t seem to be working.  For example, according to McKinsey,most healthcare consumers are not doing their homework – they aren’t researching costs or their choice of providers. And even for the handful that do use price transparency tools, new research shows this doesn’t result in savings. It’s not that patients with serious health conditions don’t want to understand their condition, the latest evidence-based treatment options, who are the best physicians, and treatment costs. It’s just that they need assistance curating and interpreting this complex information.Continue reading…

Whose Cancer Is It, Anyway?

flying cadeuciiI recently read a blog by Dr. Danielle Ofri in the New York Times “Well” blog about how as a physician she learned to respect the patient’s wishes even when they contradict her professional inclinations. It’s called Doctor Priorities vs Patient Priorities.”

She writes that the patient is looking through a “wide-angle lens” that takes in the whole of his life while the doctor’s lens is “narrowly focused on the disease that pose[s] the gravest and most immediate risk”. She saw her challenge as entering into dialogue with her patient in order better to understand the wider perspective of his whole life and to work with him to find the most acceptable way to deal with his disease.

If only Dr. Ofri were an oncologist. If only she were my oncologist. My last appointment with my onco, Dr. G, was a disaster. Not only have I not been back to her, I have not gone to any oncologist since then. Part of that is because I don’t want any treatment at this time; that’s still true.

But if I am going to be very honest, and I try to be that always, it is also because of that disastrous appointment with Dr. G.

First of all, she would not respect my decision not to have any more chemo and refused to order any scans unless I would a priori agree to chemo if she decided it was indicated. She also mocked me. It took a long time for me to tell that second bit. In fact, from that day in August 2013 until just recently—seven months!—I only told one or two other people about what happened.

The evening of that last appointment, Dr. G called me at home to continue the argument. I found myself apologizing for causing her distress. Yes, I know that’s ridiculous, but that is how I react to being bullied. Borrowing the words of a friend who really gets it, I apologize to others for their hurtful behavior and then I internalize it. I haven’t talked about Dr. G mocking me because I feel ashamed.

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Patientgate: Why Patient Recordings Will Change Everything

It’s 8.30 am, just before clinic opens. It is 2010. Dr Byte* checks an online forum, and something catches his eye.

A female patient is complaining about a doctor. Her posting has led to strident reactions from other doctors. Patients are taking her side. It looks ugly.

It turns out that the patient had asked her family doctor whether she could use her smartphone to record the encounter. Her doctor was apparently taken aback and had paused to gather his thoughts. He asked the patient to put her smartphone away, saying that it was not the policy of the clinic to allow patients to take recordings.

The patient described how the mood of the meeting shifted. Initially jovial, the doctor had become defensive. She complied and turned off her smartphone.

The patient wrote that as soon as the smartphone was turned off the doctor raised his voice and berated her for making the request, saying that the use of a recording device would betray the fundamental trust that is the basis of a good patient-doctor relationship.

The patient wrote that she tried to reason, explaining that the recording would be useful to her and her family. But the doctor shouted at her, asking her to leave immediately and find another doctor.

Some participants on the online forum expressed disbelief. But the patient then went on to state that she could prove that this had actually happened, because she actually had a recording of the encounter. Although she had turned off her smartphone, she had a second recording device in her pocket, turned on, that had captured every word.

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Patient Engagement: On Metrics and Meaning

What is patient engagement?

Everyone agrees that it’s a good thing, and that we healthcare providers should be fostering it.

How to do so, however, depends on just what you believe patient engagement means.

As Dan Munro recently pointed out, the term “patient engagement” is a hot buzz phrase, and – in the best tradition of such phrases – it’s amorphous enough and appealing enough to mean…just about anything.

Provided that it that makes us feel good about healthcare, of course. Better yet, provided that it casts our favorite healthcare approaches in a favorable light. (Rob Lamberts nicely summarizes some angles of the term here.)

I actually rather liked Munro’s post, titled “Patient engagement: Blockbuster Drug or Snake Oil?” until he got to this part: “We now have some very real metrics around what constitutes real patient engagement and Leonard highlighted two impressive examples.” He goes on to point to two studies of care coordination for chronic illness — one at Kaiser and the other at the VA – and summarizes some key improvements in outcomes.

At Kaiser, they included things like decreased mortality rates and fewer emergencies, as well as improved cholesterol screenings and more people meeting cholesterol goals. With the VA’s Telehealth program, hospital days were reduced and patient satisfaction was 86%. (BTW, I had a VA primary care clinic from 2006-2010, and several of my patients were in Telehealth.)

These are indeed nice results. Still, somehow they didn’t impress me as constituting “real patient engagement.” They seemed more like “real population health management, facilitated by teams, care coordination, communication infrastructure, and organized protocols.”

Shouldn’t real patient engagement mean more than this?

Defining patient engagement

Here’s my current take:

Supporting patient engagement means fostering a fruitful collaboration in which patients and clinicians work together to help the patient progress towards mutually agreed-upon health goals.

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What Will Tomorrow’s Doctor Look Like?

“What does the 21st Century Physician look like?”

Lisa Fields (@PracticalWisdom) cc’ed me on a tweet about this; it’s the featured question at www.tomorrowsdoctor.org, an organization founded by three young professionals who spoke at TEDMED last year.

I’ll admit that the question on the face of it struck me as a bit absurd, especially when juxtaposed with the term “tomorrow’s doctor.”

Tomorrow’s doctor needs to be doing a much better job of dealing with today’s medical challenges, because they will all be still here tomorrow. (Duh!) And the day after tomorrow.

(As for the 21st century in general, given the speed at which things are changing around us, seems hard to predict what we’ll be doing by 2050. I think it’s likely that we’ll still end up needing to take care of elderly people with physical and cognitive limitations but I sincerely hope medication management won’t still be a big problem. That I do expect technology to solve.)

After looking at the related Huffington Post piece, however, I realized that this trio really seems to be thinking about how medical education should be changed and improved. In which case, I kind of think they should change their organization’s name to “Next Decade’s Doctor,” but I can see how that perhaps might not sound catchy enough.

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