Tatooing Medical Directives on our Bodies

Unfortunately I don't know Dr. Ed Friedlander, a pathologist in Kansas City, so I haven't had a chance to ask him about his decision to have "No CPR" tatooed on the center of his chest. If you want to see what his distinctive form of advance directive looks like, the Associated Press article about using tatoos to convey medical information shows him holding his shirt open.

Many people are afraid that their wishes for how medical care should and should not be administered will not be followed. Since the default option in emergencies is to "do everything," folks like Dr. Friedlander who want to let nature take its course when their heart stops have good reason to fear chest pounding and electrical shocking if an ambulance was called for them.

It's just a matter of time until we see a Saturday Night Live routine in which the emergency medical technician gets preoccupied reading an essay on the chest of the person whose side they are called to. Whatever Dr. Friedlander's motive for the tatoo is, he's dramatizing the degree to which many people fear that health care on automatic pilot will (literally) run roughshod over them.

Should a Student be Disciplined for Being Disrespectrul on Facebook?

In discussing ethics with medical students and physicians, it's common for someone to ask: "What does the law say?" I typically respond: "Let's first figure out what we think the right thing to do is. Then we can ask how to do it within the law. If the law says we can't do it, we should check to see if we got our reasoning right. If we still think we got it right, we can consider whether the law can be changed, or if civil disobedience is the path to follow."

On July 11, 2011, the Minnesota Court of Appeals ruled against Amanda Tatro in the fascinating case of Tatro v University of Minnesota. The decision is a heartening blend of law and ethics.

Amanda Beth Tatro was a student in the University of Minnesota mortuary-science program, which prepares students to become funeral directors or morticians. The laboratory courses use cadavers that have been donated to the university.

In November and early December 2009, Ms. Tatro posted the following on her Facebook page. I've added some notes in italics:

Amanda Beth Tatro: Gets to play, I mean dissect, Bernie[this is the name she gave to the cadaver. The name comes from the film "Weekend at Bernie's."] today. Lets see if I can have a lab void of reprimanding and having my scalpel taken away. Perhaps if I just hide it in my sleeve . . . .


Amanda Beth Tatro: Is looking forward to Monday‟s embalming therapy as well as a rumored opportunity to aspirate. Give me room, lots of aggression to be taken out with a trocar.

Amanda Beth Tatro: Who knew embalming lab was so cathartic! I still want to stab a certain someone in the throat with a trocar though.[Tatro testified at the Campus Committee on Student Behavior that she was referring to a man who had just broken up with her. But at the campus hearing, faculty members testified that they feared she was referring to them.] Hmm..perhaps I will spend the evening updating my “Death List #5” and making friends with the crematory guy. I do know the code . . . .


Amanda Beth Tatro: Realized with great sadness that my best friend, Bernie, will no longer be with me as of Friday next week. I wish to accompany him to the retort. Now where will I go or who will I hang with when I need to gather my sanity? Bye, bye Bernie. Lock of hair in my pocket.

On April 2, 2010, the Campus Committee on Student Behavior ruled that Tatro should receive a failing grade in the anatomy laboratory class, that she should enroll in a clinical ethics course, that she should write a letter to the mortuary-science faculty on the issue of respect in the profession, and that she should undergo a psychiatric evaluation. Tatro appealed to the court.

Here's the section of the court's decision most relevant to professional ethics:

The university found that Tatro violated rules 6 and 7 of the anatomy-laboratory course rulesRule 7 states, “Conversational language of cadaver dissection outside the laboratory should be respectful and discreet. Blogging about the anatomy lab or the cadaver dissection is not allowable.” Tatro argues that the evidence does not support findings that she violated these laboratory rules.

..As the university asserts, public comments about “playing” with or taking “aggression” out on a cadaver are inconsistent with the notions of respect and dignity whether they occur in person, on Facebook, in a blog, or via other media.

I believe the court was entirely correct that the university had not violated Tatro's right to free speech. A core component of the profession she was preparing for is respectfulness and discretion. Whether or not the ostensible threats she made should have been taken so seriously (the court concluded that the university was correct to do so), her comments about "Bernie" violate the ethics of her profession. The academic penalty imposed by the Campus Committee on Student Behavior was appropriate. (I don't favor requiring a psychiatric evaluation unless there was a medical reason for doing so that the court record does not convey.)

In entering a profession we "profess" our commitment to the ethics of the profession. The first amendment gives Ms. Tatro the right to speak disrespectfully of "Bernie." But it doesn't give her the right to enter the funeral director profession at the same time!

Hand Washing,Teamwork, and Professional Ideals

Hand washing protects hospital patients from healthcare-associated infections. But on average, adherence to hand hygeine standards is under 40%.

In June, 2008, Northshore Hospital on Long Island started an experiment. It installed motion detectors in the doorways of ICU rooms to monitor entrance of staff, and installed cameras focused on the sink and hand sanitizer dispenser. Video auditors (in India) scored each event. The intervention tested the impact of (a) installing cameras and (b) feedback of results. No individuals were identified. Results were only reported in aggregate form.

In the 16 week prefeedback period, hand hygiene rates were under 10%! At that point, electronic boards were installed in the ICU hallway. Results were given on each shift. To my eye, the board looks cheerful. It shows the date, the target rate (>95%) and gives an electronic pep talk ("Sanitize Hands Upon Entry/Exit of Rooms!"). On May 17, 2010, the day displayed in the photo, it tells the staff: "GREAT SHIFT!!" and gives results for physicians and other health professionals.

Once electronic reporting of aggregate performance was given, adherence jumped from under 10% to the mid 80s. The results were sustained for two years.

The report in Clinical Infectious Disease doesn't speculate on what drove the change. There were no financial incentives and no monitoring of individual performance.

So what happened?

Here's my guess. Very few hospital workers doubt the importance of hand hygiene. But resolving to do better is like our New Year resolutions to lose weight or improve ourselves in other ways - easy to vocalize but hard to carry out.

The cameras without feedback accomplished nothing. But daily feedback reminded staff of where it stood relative to its ideals. And the aggregate reporting told staff that everyone was on board. In other words - an experience of unity in relation to professional ideals.

That's like the congregation singing a hymn together and praising the God they adhere to! The electronic board wasn't a voice from heaven, but it spoke to the flock every day on every shift. On a bad day it must have been like the chorus from Messiah - "All we like sheep have gone astray."

I hope a journalist or a qualitative researcher delves into the human side of the statistical story the article tells. We might learn important lessons about what helps us put our healthcare ideals into action.

Complementary Medicine in Australia - an ethical analysis

400 scientists and doctors have attacked the 19 Australian universities that teach, or give degrees in, complementary and alternative medicine (CAM):

 Such courses involve so-called ‘complementary or alternative medicine’ masquerading as, and sitting side-by-side with, evidence-based health-related science courses. We take the view that those universities involved in teaching pseudoscience give such ideologies undeserved credibility, damage their academic standing and put the public at risk.

The controversy is half scientific, half ethical.

We health educators should be honest. A lot of medical and nursing care is based on evidence. That evidence, and the sciences that allow the evidence to be developed, should, and do, form the center of the curriculum.

But much of what we physicians and nurses do is based on belief and tradition. That doesn't mean we shouldn't do and teach these things. But we should be honest with ourselves and our students about when our practices aren't evidence based. Non-evidence based practice isn't limited to CAM!

Controversy over CAM isn't new. In the early 20th century organized medicine was horrified by the growth of Christian Science. Wise physicians recognized that the emergence of Christian Science reflected a sense that something was missing in "conventional" medicine. That hunger is still present. More than 1/3 of U.S. adults use "alternative" medicine techniques. I'm sure the same is true in Australia.

Gerald Caplan, my mentor in community psychiatry, taught me a valuable lesson about CAM. He experienced intermittent low back spasm, for which he had treatment with a chiropracter. Dr. Caplan told me:

The chiropracter takes low back pain seriously and lays on hands. The orthopedist is bored by it unless he can operate. I think chiropractic theory is nonsense, but chiropractic treatment gives me relief. Bringing relief is our goal in medicine.

There are three primary reasons why physicians should learn about CAM. (1) Many of our patients use CAM, and we should understand what they're doing in order to be able to advise. (2) We need to understand, from their perspectives, what felt needs CAM is addressing and what they hope to get from it. (3) Even if - like Gerald Caplan - we don't believe CAM practice is based on hard evidence and sound theory, we can sometimes learn from the way CAM practitioners carry out their practice.

Unfortunately, one of the Australian Universities manifested the same kind of arrogance that disturbs me when I see it in medicine. (I've interlaced my comments in bold italics.):

Students are taught the science-practitioner model and our aim is to produce graduates who are critical thinkers. [so far so good!] This enables them to distinguish between fad and genuine innovation in the discipline as practitioners, intelligent consumers of research and promoters of the scientific method. [even better!] A clear distinction is made in all of our courses between areas for which the evidence is clear and those in which the science has not caught up with accepted practice and where sufficient evidence has yet to be accumulated. [This is way off base. The speaker is assuming that "accepted practice" is based on science, and the science just hasn't "caught up" yet. That's religious faith, not critical thinking.]

(For previous posts about CAM, see here, here, and here. For the New York Times article from which I learned about Australia, see here.)

Educative Journalism in Massachusetts

Apropos yesterday's post, this editorial from today's Boston Globe is interesting. I've interlaced comments of my own in bold italics:

EVEN BEFORE this year’s grand debate about containing health care costs begins on Beacon Hill, a pointed disagreement has broken out among key players in the state health care arena.

The health plans fear that legislative meddling is opening holes in the very cost-controlling arrangements that a recent law required, while legislators contend they are simply looking out for individuals who might be hurt by policy changes. The editorial makes clear that this is a classic "good vs good" conflict. Constraining costs is an ethical responsibility, since health care costs deplete wages, small business viability, and the state's capacity to fund other public goods. But protecting vulnerable people from unintended impacts of policy decisions is also an ethical responsibility.

There is nothing wrong with trying to minimize disruptions on patients from changes to their insurance plans, but the recent proposal to give certain patients the right to keep receiving treatment at higher-cost hospitals is too broadly written. Until it is clear just how many people would be exempted from policy changes, and how that might add to insurers’ costs, the Legislature should hold off, lest it undermine its own goal of making health care more affordable. If I'd written the editorial I wouldn't have used the phrase "insurers' costs." Those costs are passed through to the businesses and public agencies that purchase insurance. The public doesn't always understand that health plans - especially the regional not-for-profit health plans Massachusetts has - are essentially purchasing agents for the public and private entitites that provide health insurance to their constituents.  

The year before last, the Legislature passed a law requiring insurers to offer limited networks, which restrict plan members to certain hospitals and doctors, and tiered networks, which charge plan members more for using more expensive providers. The moves provided lower-cost insurance options for families and businesses, albeit by limiting patients’ choices of doctors and hospitals. Over the past two years, average annual premium hikes have shrunk from a projected 16.3 percent to 2.3 percent.

But this year, at the behest of Representative Steven Walsh, House chairman of the Joint Committee on Health Care Financing, and other influential legislators, the Legislature passed a budget rider making exceptions for some members of such plans. Walsh says he’s concerned that patients who were undergoing treatment at Children’s Hospital, the Dana-Farber Cancer Institute, and the Floating Hospital under the terms of their previous plans be able to continue their treatments there without bearing large cost increases. He contends that the budget language is crafted to apply to only a relatively small number of patients; he doesn’t, however, have a reliable estimate of just how many.

Although the legislative intentions may well be good, this episode is a cautionary tale.

The insurers, for their part, worry the language would allow a much larger number of patients with chronic conditions to sidestep plan features designed to rein in costs. They also worry that this action sets a bad precedent for future legislative interventions; already, lobbyists for major hospitals are seeking ways to keep their patients while still receiving higher reimbursements from insurers. It will likely now be left to the Patrick administration to work out a compromise.

Although the legislative intentions may well be good, this episode is a cautionary tale. Health care policy is so complex, and with so many moving parts, that it’s best to work out problems beforehand rather than fix them later. In this case, it’s easy to imagine a relatively small number of people with serious illnesses in the midst of rigorous treatment at Children’s, Dana-Farber, or Floating Hospital having a legitimate need to continue seeing the same doctors. I know from research I've done on the appeals process that continuity of care is a common concern for patients and clinicians. When you look at individual situations in detail it's clear that there's a continuum from long term/high complexity treatments in which deep relationships have been created over time to relatively clear cut treatments that could quite reasonably be transferred to another site. The editorial writer(s) recognize this continuum and make a nuanced argument.

But until Walsh and other sponsors can say just how many beneficiaries there are, and be certain that other patients will not be able to use the law to get treatment at their institution of choice without having paid for that option, the Legislature should avoid meddling with a reform that truly has worked.

This is a thoughtful, well-informed editorial. This kind of educative journalism has been an important contributor to the relatively collaborative way in which the state is dealing with the volatile conflicts that any serious health reform effort must tackle.

The Truth about Massachusetts Health Reform

If your view of Massachusetts health reform came from the Republican presidential debates you'd think the program is a catastrophe. That's baloney.

A recent article in Health Affairs shows it's a measured success, a work in progress.

An ongoing annual survey of 3,000 randomly selected households shows that uninsurance among nonelderly adults - the group most vulnerable to being uninsured - is steady at 94-95%, the highest insurance rate in the nation.  Emergency room visits for nonemergency conditions has declined. From 2006, when the reform went into effect, to 2010, self reported "excellent" health status improved from 59.7% to 64. There's been no drop in the rate at which employers offer insurance to employees. Two thirds of the population continue to support the program, though political bashing of "Obamacare" and "Romneycare" has led to an increase of those who are opposed to it from 17% to 27%.

As I see it, the key lesson from Massachusetts health reform is the process by which it launched and is currently handled. Prior to passage of the 2006 law, there were several years of discussions, reports, conferences, committee meetings, and more. From this combination of education, argument and deliberation, what emerged was a consensus that government, employers, and individuals had to share responsibility for making things better. And, at least as important, all that interaction created some trust among the key parties and a culture of civility that is all-too-lacking in the pathetic national non-dialogue on federal reform.

In terms of shared sacrifice: individuals accepted a mandate that we be insured; employers accepted a requirement that they provide insurance or pay into a state pool; and the state accepted responsibility for subsidizing low income folks and for creating a mechanism - the Connector - to administer the new forms of insurance that were made available.

Those leading the reform process decided to defer the most challenging aspects of reform - (1) cost containment and (2) delivery system reform, until almost everyone in the state was insured. The agenda for Massachusetts has now shifted to those two issues.

In 2012, Governor Patrick, a Democrat, is using the same process that Governor Romney, a Republican, used in 2006 - orchestrating broad stakeholder participation, and using the bully pulpit of the state house. Instead of bashing insurers for the health cost trend the Governor is directing insurers to drive hard bargains. This repositions the insurer from being the enemy of the public to being the agent of the public. The fact that more than 90% of the Massachusetts insurance market consists of locally based not-for-profits makes this a viable strategy for the state.

I'm deeply skeptical about the readiness of the U.S. to come to grips with health costs, but I'm guardedly optimistic about Massachusetts. This year rates in the small group market are going up by only 1.8% (see here and here). Fee-for-service is diminishing - 1.2 million folks (20% of the insurance market) are already in programs with global budgets. And from conversation with friends who practice in different hospitals and medical groups I know that the medical community is working on reengineering clinical systems to produce equal or better results at a lower cost.

If the Supreme Court finds the Accountable Care Act constitutional and it becomes clear that the law will stand, it will be easier for other states to do the kind of long term work with messy and difficult problems that Massachusetts is doing. Hysterical tantrums about "Obamacare" are getting tiresome!

(If you're interested in Mitt Romney's role in launching the Massachusetts reform process, see this excellent New Yorker article.)

The ethics of writing about children with mental illness

I was recently asked about the ethics of writing about children and adolescents with mental illness. I've edited the actual question to preserve privacy:

I've been asked to consider writing a book about a parent and a mentally ill child. I'm convinced that the story needs to be told; but I'm not sure how to do it ethically. We don't want to re-traumatize the child, who is unable to give informed consent to interviews or to decide about making the story public, and probably won't be able to give informed consent even after reaching the age of majority.

We want to be responsible -- to respect the child's privacy and to do no harm. But we want to validate the experiences of other parents who are living through this with their children; to improve public understanding of the condition; and to advocate for the kids and families who are struggling. They're suffering in silence right now.

Because of the nature of the disorder and the behaviors that children with the condition display, the "commercial" literature that's available pushes the boundaries of good journalism. So much is changed to protect the children's privacy that it damages the credibility of the writing. But it's impossible to guarantee privacy if we write honestly. If we describe even one event exactly as it happened, SOMEBODY is going to recognize the child.

What an important question this is! It poses a fundamental "good vs good" conflict: the value that the story might have for other parents and folks who make policy relevant to the child's condition vs the child's right to privacy and protection as a minor.

Apart from how individuals will weigh these values, cultures themselves vary. Many years ago I joined a psychiatrist in India at a session in a clinic serving the poor. I knew him to be a kind and considerate man of great personal and professional integrity. He asked patients who spoke English to "talk with the doctor who is visiting with me from the United States." After an extended discussion with a couple I asked my host if it would be acceptable for me to ask for their permission to take a photograph of them. To my astonishment, my host responded - "just go ahead - you don't need to ask permission." (I wasn't comfortable doing this and put aside the photograph idea.) Subsequently I experienced the same cultural perspective in settings where I was the only Caucasian - people sometimes took photographs of me as an interesting phenomenon.

My reaction to the question is unambiguous. For me, the child's interests come first. I advised writing a well-disguised version of the story that met my rule of thumb - the child's neighbors, teachers, and friends shouldn't recognize who the story is about, and the child, now or at an older age should feel respected by the way she or he is written about. That level of disguise may diminish the value of the story for other parents or policy makers, but in my view that's the correct trade off among values.


On World AIDS Day in 2005 I was in Madurai, India. A man disguised as a giant condom was circulating in the crowd. When I pointed my camera at him he indicated that I should stand next to him and be part of the photo. Perhaps he felt that I should collaborate with him and not objectify him. FYI, here's the photo:
 

Kristin Barker, a sociologist at Oregon State University, has a fascinating, fun to read article in a recent issue of Social Science & Medicine - "Listening to Lyrica: contested illnesses and pharmaceutical determinism."

In my psychiatric practice I was often asked to see patients with mysterious symptoms. Many of the patients resented being asked to see a psychiatrist, feeling they were being sloughed off as whiners, hypochondriacs, or malingerers and told that their symptoms were "all in the head." There was no doubt that they were suffering. But what were they suffering from?

Some of these patients had been diagnosed with fibromyalgia syndrome, a condition of unkown etiology characterized by chronic widespread musculoskeletal pain, multiple tender points, sleep disturbance, fatigue, and other "non-specific" symptoms. In June 2007 the FDA approved an antiseizure medication - appealingly branded as "Lyrica" - for treatment of fibromyalgia. Having a drug officially endorsed as treatment for their condition went a long way towards validating the symptoms as reflecting a "real" illness.

Barker makes three key points:

• Having a treatment strengthens belief in the disease. If there's a pill that helps, the person must be ill. From a sociological perspective, Lyrica wasn't simply treating a condition, it was validating the condition as real!
• Direct to consumer advertising (DTCA) has a powerful impact on social behavior. Insofar as Lyrica ads reduced the blame patients often experienced, the ads were a boon.
• But the ads, which helped make Lyrica a billion dollar blockbuster drug for Pfizer, did so in part by showing glamorous women (actresses) supposedly with the condition, and by portraying the drug as a magical cure. In real life Lyrica rarely acts in the magical way the ads suggest. Some women with the condition felt that the ads led to their being blamed for not getting fully well as the actress portrayed. (For an example of such an advertisement, see here.)

Barker concludes that Lyrica has been a decidedly mixed blessing. It contributed to diminished blaming of the victim. It gave physicians and patients an additional intervention to try. But it fostered false hopes and led to further medicalization - women who might have recovered from a bad spell without diagnosis or medical intervention were persuaded that they had an illness and needed a drug. And when Lyrica didn't perform as the ads suggested it would, some women were blamed for refusing to get better.

(For another post about blaming the victim, see here.)