Does My Doctor Trust Me (and Does It Matter)?

Members of the  American public are frequently surveyed about their trust in various professionals.  Doctors and nurses usually wind up near the top of the list, especially when compared to lawyers, hairdressers and politicians.  Trust in professionals is important to us: they possess expertise we lack but need, to solve problems ranging from the serious (illness) to the relatively trivial (appearance).

How much professionals trust us seems irrelevant: our reciprocity is expressed in the form of payment for services rendered or promised, our recommendations to friends and families and repeat appearances.

So I was surprised to read an article in the Annals of Family Medicine describing a new scale to measure doctors’ trust in their patients.  This scale, based on input from focus groups and validation surveys of physicians, was developed for research purposes on the grounds that trust is a “feature of the clinician-patient relationship that resonates with both patients and clinicians.”

Hmmm. I hadn’t really thought about trust being a two-way street in my relationship with the doctors and nurses who take care of me.  But given the push for us patients to become actively engaged in our health care, it’s not surprising that questions would arise about how dependable we are as partners. And it is a sign of the times that as clinicians increasingly face incentives to deliver evidence-based medicine and are held accountable for our health outcomes, our trustworthiness as partners has become professionally, if not economically, important to them.

While this new scale is only a research tool, its creation nevertheless raises interesting questions about how traditional notions of trust in medicine are changing in the new clinician-patient relationships that the media urges us to forge. So let’s examine it as a reflection of the idea of physicians’ trust in their patients.

Here are nine of the 18 items of the trust scale.   Clinicians are asked:

How confident are you that this patient will:

• Understand what you tell him/her?
• Accept your medical judgment?
• Tell you about all the medications and treatments he or she is using?
• Believe what you say?
• Follow the treatment plan you recommend?
• Be actively involved in managing his/her condition/problem?
• Respect your time?
• Provide all the medical information you need?
• Not make unreasonable demands?

Far from reflecting the new kind of partnerships we are encouraged daily to develop with our doctors and nurses, these questions presuppose that we are trustworthy only if we assume that old-fashioned passive position relative to our clinicians’ authority.

As someone actively engaged in my care, I ask a lot of questions: Sometimes I don’t understand the explanation or directions I’ve been given.  I prefer to come to an agreement about a treatment plan, rather than just follow my doctor’s directions, and agreeing on the plan takes time.  Does this mean that I am making unreasonable demands and disrespecting my clinicians’ time? If I am sufficiently knowledgeable to be wary of my clinicians’ possible conflicts of interest, am I questioning their medical judgment?  If so, am I untrustworthy?

Consider also how my recent treatment for stomach cancer would affect my oncologist’s rating: I was too woozy to be a good historian about my symptoms or a good reporter about my medication taking.  I wobbled frequently in my adherence to my treatment plan and frequently misunderstood what I was told due to the fog of illness and treatment. My appointments often ran over their allotted time because we were discussing complicated changes in my treatment.  Have I therefore misunderstood what I was told?  Have I disrespected his time?  In short, am I trustworthy?  Apparently not.

This scale is a work in progress for use only as a research tool.  It is notable primarily as a bellwether. Its development elicited fairly broad agreement from physicians that we patients are most trustworthy when we cede unilateral authority and control of our care to them.

But the scale does identify a technical challenge for future efforts to measure our clinicians’ trust in us. While the dimensions of our trust in physicians are well established (technical competence and fiduciary responsibility, that is, moral obligation to place patients’ interests above his own), the components of our clinicians’ trust in us are tougher to nail down.   Questions must be sufficiently robust to accommodate enduring characteristics of personality, culture and communication style that vary among individuals in our willingness and ability to engage in our care as well as account for those that vary within individuals as we cycle through sickness and health.

Maybe it is premature to measure clinician trust in patients.  Maybe all of us – patients and clinicians — just don’t have enough experience yet to identify the dimensions of trust that are relevant to these new partnerships.  There is evidence that many people are deeply ambivalent about being active and engaged in their care, and many of us lack the skills, knowledge, resources and confidence to become so.  It is easier to be passive, especially when we are ill.  And if the small, non-random sample of physicians who contributed to the development of this scale is any indication, clinicians are similarly ambivalent about changes to this familiar dynamic.

But as the requirement that patients participate actively in preventing illness and getting well has become more consequential, it is clear that patients and clinicians alike must recognize that we share these aims and that we are mutually dependent on one another to reach them.  We patients are no longer just the recipients of our clinicians’ ministrations.  Rather, in order to benefit fully from our care, must share in making decisions about it and take responsibility for carrying out the treatment plans during the 99.999 percent of the time when we are on our own, unsupervised by health professionals.

Only when such partnerships become more common and the evolving relationships between physicians and patients become better established will the matter of physicians’ trust of their patients become relevant and interesting.

Jessie Gruman, PhD, is the founder and president of the Washington, DC -based Center for Advancing Health. She is the author of Aftershock: What to Do When You or Someone you Love is Diagnosed with a Devastating Diagnosis. She blogs regularly on the Prepared Patient Forum.

Use The Thing to Watch in the Medicare ACO Regulations

Health care lobbyists and advocates are bracing for six pages of the health care reform law to explode into more than 1,000 pages of federal regulations when the Department of Health and Human Services releases its long-delayed accountable care organization rules this week. Politico

What should you be looking for as you snuggle by the fireplace this weekend reading the draft ACO regs?

Rob Lazerow writes a helpful article listing 5 Things to Watch in the Medicare Shared Savings Program Proposed Rule. His list of five key design issues includes:

1. How will patients be assigned to ACOs?
2. To what cost benchmark will ACOs be compared?
3. How will bonuses be calculated and paid?
4. For which quality metrics will ACOs be responsible?
5. What is the application process?

I’d like to add a sixth  item — which actually would be #1 on my list.

As I’ve previously written, IMHO the central issue around ACOs is:

Are (hospitals and doctors) viewing ACOs as a way to truly develop patient centric, collaborative care or as a means toward consolidating market power against payers? We really don’t know.

So here’s item #6:

6. What incentives and safeguards will assure that ACOs are focused on coordinating and integrating clinical care vs. consolidating market power?

Here are some specifics I’ll be looking for:

• How meaningful are guidelines, metrics and thresholds that define and specify elements of clinical integration?
• Are doctors and hospitals incentivized to provide value? How will this be measured?
• Will there be explicit safe harbors clarifying anti-trust and other regulatory issues? Will there be allowances for meaningful collaboration among providers? Will there be penalties for collusion leading to higher prices?
• Are the ACO Shared Savings regs designed to be an end point financing/delivery model or a first step in a transition toward shifting some downside risk to care providers (e.g., bundled payments or episodic payments)? There’s a danger that this initial Medicare shared savings ACO approach could become the worst of both worlds:
  • retaining the perverse incentives of current fee-for-service payment while adding potential for bonuses
  • not providing sufficient long-term incentives for care providers to change systems and workflow to improve patient care.
• Will there be specific requirements for ACO information technology?
• …and others (please add your comments).

Vince Kuraitis JD, MBA, is a health care consultant and primary author of the e-CareManagement blog where this post first appeared.

Meaningful Use Conflicts Of Interest In Guideline Development: A Dirty Little Secret Gets Aired Again

An Archives of Internal Medicine article (Conflicts of Interest in Cardiovascular Clinical Practice Guidelines) is getting a lot of notice today. In essence, many of the physicians who develop guideline that influence practice patterns and payment decisions have conflicts. The authors recommend only allowing those without conflicts to write the guidelines.

This isn’t a new issue. In 2006 I wrote a piece (Another dirty little secret is out in the open) and am reposting it below because it’s timely:

A year ago in Time to deal with medicine’s dirty little secrets?, I wrote about a variety of practices that are relatively well-known in the health care field but would be shocking to outsiders. Industry often takes the blame for “aggressive marketing tactics,” and no doubt some of that is deserved. But physicians are also culpable.

The open secrets include the ghostwriting of journal articles by industry sponsors, physicians and academic medical centers holding ownership stakes in companies whose products they are researching, the clinical role sometimes played by orthopedic sales reps, and perhaps the most egregious example: physicians who set guidelines having financial relationships with the companies that benefit from how those guidelines are set.

Now we have a new example, which is even more serious than usual. A recent New England Journal of Medicine article blames Eli Lilly for overzealous promotion of Xigris. According to the Boston Globe:

Eli Lilly and Co. funded medical guidelines created for the treatment of [sepsis] in an effort to boost sales of a drug with questionable benefits. The allegation was made by senior scientists at the National Institutes of Health. [They] said Lilly tried to shape the guidelines for use of the drug Xigris by sponsoring a three-pronged marketing campaign

The first two phases are by now almost standard practice in the industry:

1. Lilly paid a task force to spread the word that hospitals were rationing Xigris because of its cost, which forced docs “to decide who would live and who would die”
2. Lilly “orchestrated” the development of practice guidelines to treat sepsis that called for early use of Xigris (an example of the phenomenon I have described before)

But then Lilly allegedly took a third step, which was a little shocking even to me:

Now, Lilly is sponsoring lobbying efforts to turn the guidelines into quality standards. Hospitals that follow such quality measures receive higher payment from insurers.

What’s happening here? Basically, an influential group of doctors is being lazy and greedy, and Lilly is enabling their behavior. The doctors put their fingers in the cookie jar and Lilly keeps restocking it. The public is paying for the cookies –in the form of higher product sales and sub-optimal health care– and should get fed up!

I have no problem with companies using legal means to promote their products, even if their tactics are “aggressive.” They owe it to their shareholders to maximize return on investment. But it isn’t in their long-term interest to push things as far as the medical profession often lets them.

Industry leans on the reputations of individual physicians (aka “key opinion leaders”), medical societies (aka guideline writers), and journals to legitimize their marketing messages. It’s up to the medical profession to scrutinize industry claims and issue independent guidelines and quality standards. Sometimes these claims hold up and deserve to be propagated. Sometimes they don’t. If the docs and journals don’t do their jobs they deserve to lose credibility.

It’s hard to know the extent to which medical guidelines are already corrupted. The situation is a bit like the incident when the Chinese President’s plane was refitted. In the process of fixing up the plane someone inserted a bunch of listening devices (presumably at no extra charge). When the Chinese checked out the plane and realized it was bugged they had to rip the whole thing up. That’s something like what is going on within the major payers. They’ve stopped treating journal articles and guidelines as objective and have started doing their own analyses. But do we really want to leave health care decisions just to them?

Here’s some free advice to the different players in health care:

• Industry: Feel free to market your products and services aggressively, but don’t take things too far. If you do you’ll end up killing the goose that lays the golden eggs. No one will trust doctors, guidelines or journals anymore
• Physicians: Remember that pharma and device companies are not stupid. If they spend money supporting your research or sending you to conferences or sponsoring continuing medical education it’s because they expect to get a return on their investment. It’s awfully hard to remain objective in such instances. Your job is to adopt the best medical practices and put the patient first –sometimes that requires expensive new treatments and sometimes old, cheap standbys are better
• Payers: Go ahead and challenge the objectivity of journal articles and guidelines. On the other hand, don’t pretend that low cost is always synonymous with best treatment. Expect physicians to keep you in line on that.
• Patients: You need to look out for yourself. Find a good, honest physician. Take a look at who’s sponsoring the educational materials you receive. Ask your physician about alternative treatments and do some research yourself

Shaken, Flooded, Stressed by Power Outages, Fukushima Daiichi Moves into Second Place

two weeks ago, I wrote an article titled Nuclear plant issues in Japan are the least of their worries that attempted to provide a realistic prediction of the worst case consequences of the one-two punch from a very large earthquake and tsunami on a large nuclear power station on the coast of Japan. It has become increasingly apparent during the past week that my view from afar was not as clear as I would have hoped. I was overly optimistic about the final consequences of the events at Fukushima Daiichi.

On the catastrophic scale of commercial nuclear energy accidents, where Three Mile Island was in second place and Chernobyl was the clear leader, Fukushima Daiichi has moved into second. It is likely that it will end up to be far closer to Chernobyl than to Three Mile Island in overall economic, public health and geographic consequences.

Update: (Posted on March 27, 2011 at 0234) The above paragraph has been changed to specify commercial nuclear energy accidents to avoid complications with discussions about accidents that have occurred in the other aspect of nuclear technology. The commercial and military sides of nuclear are complicated enough to merit two mostly separate conversations. End Update.

There has been enough damage to the plants and enough radioactive material released to pose a danger to public health for someone who does not take any precautions, though actions to evacuate, shelter and monitor contamination have minimized the actual effects – so far. There have also been a fair number of plant workers and other emergency responders who have received substantial radiation doses in the range of 100-200 mSv (10-20 Rem). Those doses are about 20% of the dose required for early signs of radiation sickness (1 Sv or 100 REM) and at the threshold where there is a statistically significant increase in long term cancer risk.

None of those heroic recovery workers has been exposed to the doses that caused radiation sickness for Chernobyl first responders, but the use of emergency limits for large numbers of recovery workers is certainly no cause for celebration among those of us who believe strongly in the importance of safely using nuclear energy. As long as the recovery workers pay attention to their monitoring devices and use caution, there is no reason to expect that there will be anyone exposed to any higher levels than those already received. Achieving the goal of acceptable individual doses will likely require rotating a rather large, well trained work force over a long period of time during the clean up operations.

The radioactive material released from the Fukushima Daiichi nuclear plant has already complicated recovery and response efforts for the area affected by the earthquake and tsunami. According to a recent story in the New York Times titled Extent of Damage to Japan’s Infrastructure Still Unclear transportation to the area is not easy, and some assistance from normal sources of expertise is being prevented because there is enough contamination to cause insurance concerns. I even heard through the grapevine that some of the US Navy ships that were off of the coast of Japan are having to engage in some complex and expensive efforts to clean up the fallout.

The final results are worse than what I predicted. Even if you are deeply steeped into the science of the health effects of low level radiation and recognize the evidence showing that doses below a certain level have a very good chance of being hormetic, it is not good to “crap up” a large geographic area with a significant mass of fission product isotopes like Cs-137 that will give off strong gamma radiation for many years. (Cs-137 has a 30 year half life.) Though I hope that the Japanese government does not take the step of permanently evacuating large, lightly contaminated areas, there is little doubt that some formerly prosperous farms and fisheries will be out of business for a very long time.

What this event has taught me is that I need to retreat a bit. I remain firm in my belief that human society needs nuclear energy and that there is no other alternative to fossil fuels that has a chance of meeting needs for reliable power. The importance of reducing fossil fuel consumption should be apparent to anyone who is following the current events in the Middle East and North Africa, whose community is a new host to gas extraction, whose mountains are being blown up, or who is concerned about the effects of dumping 20 billion tons of waste gases into our common atmosphere.

However, I am now certain that not all operating reactors are equally safe, equally well maintained, or equally well sited. I have always known that there are risks associate with nuclear energy – it is such a concentrated source of power that it is impossible to ignore just how quickly it can get out of control.

The importance of keeping fission and the resulting radioactive material under control; the importance of careful civil, mechanical, electrical and system engineering; the imperative for intensive, continuing training; and the always vital step of conducting operations and maintenance with a questioning, learning attitude was such a part of my indoctrination into the technology that I projected that attitude onto the entire enterprise. That was a mistake that I will not repeat. Humans can learn to use nuclear energy safely and effectively; we can design and operate systems that do not put the public at risk. However, that does not happen automatically.

There will always be some who are tempted to take short cuts or to fail to correct design errors because they are concerned about short term costs. The best lesson that I can take from Fukushima Daiichi is a better understanding of the scale of the potential losses. Final costs in the tens to hundreds of billions can overwhelm any short term savings in materials and construction time. It is not worth it to engage in efforts to slice a few dollars from initial costs by slimming down the defense in depth that has made most nuclear plants the safest, cleanest and most reliable energy production systems on the planet.

The good news is that no one has been building the types of boiling water reactors whose limits were exceeded at Fukushima Daiichi in many decades. Today’s Generation III and beyond reactors include numerous design features that would have provided substantial margins against the specific challenges faced at Fukushima, but that is no cause for complacency. There is always something more to learn and improve.

Rod Adams is the founder of Adams Atomic Engines, Inc. He is host and producer of The Atomic Show Podcast, as well as author of Atomic Insights Blog, where this post originally appeared.

How the Veterans are Winning the War

At a seminar last night at the Center for Public Leadership at Harvard’s Kennedy School, one of the students asked a question along the lines of, “How do you know when you have done too much with regard to transparency?” My answer was that the question presupposed the wrong approach to transparency, that it was being driven by the CEO without proper attention to the efficacy and appropriateness of what was being measured and disclosed. Instead, I suggested that it should be driven by the leadership of the organization, but based on metrics that were viewed as useful and appropriate by the clinical staff. In such an instance, transparency serves the function laid out by IHI’s Jim Conway, as summarized here in an article discussing the BIDMC experience:

[P]ublic reporting created what management guru Peter Senge calls creative tension, a key in getting an organization to change. Announcing a daring vision — the elimination of patient harm — combined with honestly publicizing the problems, fuels improvement, he said.

I expressed the concern last night that the general recalcitrance of the medical profession about engaging transparency will inevitably lead to fiats about disclosure from government regulatory agencies. The problem with those fiats is that they will be grossly constructed and force hospitals and doctors to focus on the wrong things, in a manner not consistent with widely established principles of process improvement. (See, for example, this approach in Maryland.)

Now comes the Veterans Administration, proving the case with panache! You may recall my complimentary post on the VA back in January. Thomas Burton’s article this week in the Wall Street Journal — “Data Spur Changes in VA Care” — documents this in more detail. Some excerpts:

Hospitals serving U.S. military veterans are moving fast to improve care after the government opened a trove of performance data—including surgical death rates—to the public.
The information was released at the urging of VA Secretary Eric K. Shinseki. Among other things, it presents hospitals’ rates of infection from the use of ventilators and intravenous lines, and of readmissions due to medical complications. The details have been adjusted to account for patients’ ages and relative frailty.
“Why would we not want our performance to be public? It’s good for VA’s leaders and managers, good for our work force, and most importantly, it is good for the veterans we serve,” Mr. Shinseki said in an emailed statement.
At VA hospitals in Oklahoma City and Salem, Va., the rate of pneumonia acquired by patients on ventilators was shown last fall to be significantly higher than the national VA average. The Salem hospital says a relatively low number of patients on ventilators skewed its infection rate higher, but staff members at both facilities say the numbers prompted action.
Seeing the data helped, says the Salem hospital’s chief of surgery, Gary Collin, because “you can become kind of complacent.” Continue reading “How the Veterans are Winning the War”