Wednesday, October 31, 2007

Cheating on your doctor

An amusing and useful story on MSNBC starts: “After 15 pleasant years with the same person, Marcia David started seeing someone else. As several months of two-timing passed, she came clean: She told her doctor she’d been seeing a naturopathic physician on the side.”

The story came to me by email, accompanied by these comments: “Many people are seeking natural approaches to health care, but not everyone is comfortable with telling their traditional family doctor about it. Some patients hide their newfound approach to health care from their usual doctor but this secretive approach to health care can be harmful.”

For me the key part of this story is the source of the email. It came from Howard Trachtman, a mental health consumer activist in Massachusetts. Howard regularly sends emails to a distribution list of mental health professionals that includes the Commissioner of Mental Health and others in leadership positions.

Communicating about alternative medicine is an important piece of the effort to empower health consumers and patients. If we include prayer in our definition, two thirds of the U.S. adult population uses “alternative medicine.” When patients and physicians talk about alternative medicine we are not just exchanging nuggets of information -- we are acknowledging that as important as evidence-based medicine is, it is only part of what we do to improve our health when we are ailing.

The NIH Center for Complementary and Alternative Medicine provides practical tools for physicians and patients to help them become more skillful at including alternative medicine in their conversations.

Experts in quality improvement like Jim Conway, vice president of the Institute for Healthcare Improvement, emphasize the importance of patient, family and advocate voice in making the health system better, safer, and fairer. We all need to improve our skills in talking straight with each other. This resolution isn't just politically correct goody-goodyism -- it is more evidence-based than many of the things we routinely do in health care.

So I thank Howard Trachtman and his colleagues for the email and for years of advocacy work!

Tuesday, October 30, 2007

The Ethics of International Public Health Collaborations

For the past three years I have had the privilege of being able to study the Indian Network for People Living with HIV/AIDS (INP+), an idealistic organization whose threefold mission is to provide networking, direct support services, and advocacy, for people throughout India with HIV/AIDS. My particular focus has been on the partnership between INP+ and the U.S. Centers for Disease Control (CDC) Global AIDS Program in India (GAP-I). My aim has been to learn about how a developed world entity like the CDC can best assist a consumer-driven organization like INP+ based in a very different cultural setting.

A case study of the productive five year relationship between INP+/GAP-I has recently been published in the journal “Organizational Ethics.” In the relatively lengthy case report I drew three potential lessons for developed world funders and donors:

First, like a couple early in a marriage, GAP-I and INP+ have struggled with the question of what they can reasonably expect from each other, how much to pressure each other for change, and how best to apply that pressure. This wasn’t easy. Their experience identified skill at calibrating an optimal level of tension for the partnership as a crucial capacity. Too little tension means expectations are too low. Too much tension leads to severed partnerships. Getting it right requires constant monitoring and frequent recalibration. (The same is true in my clinical specialty – psychiatry.)

Second, the international collaborations between entities like CDC, World Health Organization, Gates Foundation, and Doctors Without Borders, and community-based organizations like INP+, that are so central in the fight against the AIDS pandemic, recurrently bring together partners with different organizational cultures. Successful partnerships require a carefully designed process for bridging the potentially destructive cultural gap. GAP-I located the bridging process in the responsibilities of (a) an Indian man with a strong community background who (b) had a preexisting excellent relationship with INP+ and who (c) was a CDC employee. Whatever mechanism is used, successful collaboration requires robust bridging.

Finally, partnerships between managerially sophisticated, technically advanced developed world organizations like the CDC and community-based organizations like INP+ are especially challenging in the context of different national cultures. Dora Warren, the founding director of GAP-I described the approach she took to the collaboration as follows: “Progress and success is about having trusting relationships. Trusting relationships come partly from informal contact but also from really working together.”

In the course of the study I came to see the GAP-I philosophy of seeking to build a trusting partnership by working together more as a moral perspective than simply as a practical technique. The GAP-I approach is consistent with the concept of “Servant-Leadership” that envisions leading by serving those who are being led. In working with organizations that are strongly mission driven like INP+ the Servant-Leadership method is especially apt.

At a time when the U.S. is widely regarded around the world as trying to "lead" via militaristic bullying, studying the use of the Servant-Leadership approach by a U.S. government agency has been deeply satisfying.

Saturday, October 27, 2007

A Needed Speech about Health Care Rationing

The October “Election 2008” survey from the invaluable Kaiser Family Foundation election tracking project sent me to my file cabinet.

In January 1998 I spoke to the Vermont Leadership Institute about “Setting Limits: A Health Care System that Plays Fair.” I knew nothing about the Vermont Governor (Howard Dean) at the time, but part of my presentation was a speech I wished he would give. (I sent it to his office but nothing came of it.)

There is a tendency in the health policy community to believe that the U.S. is too individualistic to accept externally imposed health care limits, whether by Medicare or private insurers. This is why we are turning to “consumer directed health care” and the transfer of financial risk to the individual.

I can’t prove it, but my strong hunch has been that with leadership of the kind that John Kitzhaber provided as governor of Oregon we might not turn out to be so hopeless re understanding the need for health care limits and being able to accept limits set by a fair process.

Here is the speech I still believe needs to be given:

My fellow Vermonters. Four years ago your political leaders felt frustrated by our failure to achieve comprehensive health care reform. Now, with hindsight, we see that you, the public, were right to slow us down. The way the Clinton plan crashed and burned shows the wisdom of your counsel!

Part of the problem for health care reform is technical. Health policy is complicated. The dueling experts who advised us about the single payer system and the competitive model all made good arguments. But we Vermonters know you can “prove” almost any conclusion by packaging the numbers cleverly, so we ended up skeptical!

The deeper problem is values. Our nation has been confused about what it can reasonably expect from the health care system. If we ask the system to do anything that has the slightest possibility of extending life for the individual patient, no matter how costly and how uncertain, are we prepared to sacrifice other public goods to make this happen? If we ask the system to seek the greatest benefit for the population within the limits of a budget, can we accept the painful consequences this may entail for the individual patient?

Until we decide where we want the health care system to go, we can’t possibly reform the way in which we get there.

Our Commission on the Public’s Health Care Values and Priorities has given us three pointers for the health care reform roadmap we need:

  • First, Vermonters are committed to continuing to provide insurance for the elderly and the poor. Support for Medicare and Medicaid is rock solid.
  • Second, we Vermonters are committed to finding a way to insure our 65,000 fellow citizens who are currently uninsured.
  • Finally, if rationing or other big changes have to happen, Vermonters want to be involved all along the way. No behind-closed-doors planning for us!
Today I want to launch us on the next step in health care reform. We know from states like Oregon and experience elsewhere in the world that providing excellent care to everyone will require us to set priorities. We Vermonters don’t mince words. That means rationing.

I have therefore asked the Commission on the Public’s Health Care Values and Priorities to help us identify the key values that should guide us in setting priorities and rationing. I have directed the Commission to learn from experience elsewhere as part of the process of public reflection, and to give us a full report 12 months from now, in January 1999.

If we can cooperate in addressing these challenging questions, Vermont will be able to start the new millennium with a meaningful package of health care reform that can address our unique circumstances and teach something to our brethren in the flatlands as well. Thank you and Godspeed!

Friday, October 26, 2007

Cancer survival, complexity, and ethics

Soon-to-be-published research on depression and cancer survival allows us to sharpen our thinking about the link between psychology and ethics as well as the link between psychology and cancer survival.

The University of Pennsylvania study followed 1,093 patients with head and neck cancer. 645 died during the study. Analysis of the quality of life questionnaire showed no correlation between emotional status and survival.

Whether and how positive emotions affect the course of cancer has been debated in terms that are often polarized and bitter. Proponents attack the “medical model” for ignoring the patient’s capacity for self healing. Opponents attack the “happiness model” for encouraging patients to blame themselves for relapses and leading the gullible to forgo potentially effective treatment.

Reading about the Pennsylvania study led me to do a Google search on Dr. Bernie Siegel, perhaps the most famous champion of psychological healing. The search was revealing. The first entry was to “Quackwatch.” It warned against fraudulent marketing of claims of cure by psychological methods. The second was to the Premier Speakers Bureau. It extolled Dr. Siegel as an inspiring speaker, teacher, and healer.

Bernie Siegel as quack and Bernie Siegel as guru, side by side in Google. How do we handle this juxtaposition?

Good clinical ethics and good organizational ethics require skill at embracing and managing complexity. When patients with cancer are interested in “holistic” treatment programs, skillful clinicians find ways of supporting their quest for an improved emotional state while also helping them remain open to evidence based chemotherapy and radiation approaches. When organizations encounter ostensibly incompatible “good versus good” conflicts, skillful leaders find ways to help the contending parties tolerate uncertainty and explore options.

For many situations initially seen in stark either/or terms – whether with patients or within organizations – superior solutions can be found if we can eschew the pleasures of righteous certainty and learn to tolerate ambiguity. Muhammad Ali taught us this when he explained his philosophy of boxing: “float like a butterfly, sting like a bee.”

Thursday, October 25, 2007

Google, Nielsen, Health Care Limits, and Primary Care

Yesterday’s New York Times reported on a partnership between Google and the Nielsen company. The article made me worry even more than usual about the harried life of our primary care physicians.

With Google’s data mining capacities and Nielsen’s detailed tracking of television viewing, advertisers will soon have vastly more precise information about which viewers see which advertisements. Not too far down the road we can anticipate marketing targeted to individuals in accord with their television viewing and Internet use patterns. Direct to consumer drug advertising is already effective in driving demand for branded products and will become more so.

Think of what this means for the primary care physician (PCP). More and more patients will come to appointments with specific drug requests. When advertising has alerted the patient to a uniquely effective treatment, health is advanced and free speech serves its purpose.

But what about costlier, branded, me-too medications? For patients who will be paying for the medication themselves the PCP can be an adviser – “it’s your money, but I don’t think it is worth it for you.” For patients with tiered drug insurance the PCP can similarly advise as to whether the higher copay purchases comparable benefit.

Patients, however, will increasingly ask their PCPs to appeal on their behalf. Appeals are time consuming. When the appeal is clearly justified physicians grit their teeth and do what is necessary. But when it is for an advertising-driven me-too product physicians have to choose between spending uncompensated time trying to convince the patient that the drug is not called for or spending uncompensated time on an appeal they do not believe in.

Our health system has largely stopped putting primary care physicians at direct financial risk for the cost of the medications they prescribe, but PCPs are often subject to other forms of pressure about their prescribing practices. Placing PCPs between the Scylla of evidence based prescribing and the Charybdis of ever increasing advertising-fueled patient demands will only add to the overburdened state we have already put them in.

Good medical ethics requires a robust system for making appeals about insurance limits. But a viable health care system requires a robust primary care sector. If we continue to drown our PCPs the sector will vanish.

It is possible to create processes that protect patient interests in access to medications that are “needed” rather than simply “desired” and at the same time protect physicians from unreasonable “hassle.” Kaiser Permanente’s approach to managing Selective Serotonin Reuptake Inhibitors (Prozac and its cousins) shows us how to do this. Our discombobulated health system needs to learn from exemplary practices like the one Kaiser Permanente offers.

Tuesday, October 23, 2007

Information Technology, Ethics and Integrity

Today I learned about and visited IT expert John Halamka’s new blog – “Life as a Healthcare CIO.” It is a very interesting site, and while it is not about ethics per se, readers with a serious interest in the practical aspects of how organizations can strengthen their ethical climate will find it useful.

In teaching about organizational ethics I often quote the aphorism: “if the CEO is not Chief Ethics Officer, developing an ethics program will probably be a waste of time.” For ethics activities to succeed CEOs don’t have to lead them – but their strong support is vital. After reading Halamka’s blog I have a new aphorism: “if the CIO is not Chief Integrity Officer…”

Two of Halamka’s first three postings have major ethical implications. His discussion of his own change of attitude on flexible work arrangements and telecommuting shows deep respect for the well-being of workers as well as for their productivity. His view is – if technologically enabled flexibility sustains (or better, improves) productivity and increases staff satisfaction, let’s try it. And the last two sentences of his posting about “the top 10 things a CIO can do to enhance security” sound like an ethically concerned clinician, not a technological geek:

“Compliance with HIPAA is a key motivator to implement good security, but most important is retaining the trust of our patients. We are the stewards of their data and our security systems are the last defense against breaches of confidentiality.”

Halamka’s blog got me thinking about my own experience with IT in the group practice I have been part of for 32 years. I don’t do anything fancy, but the electronic medical record lets me integrate what I do with patients with clinicians who are at a distance from us. I have sat at the terminal with a patient just beginning to acknowledge an alcohol problem and collaboratively composed a clinical note that would go to his primary care physician. We bargained. I yielded on “alcoholism” and agreed to “alcohol problem.” For my patient that was a step forward. The electronic substrate facilitated collaboration, communication, and acknowledgment of the alcohol problem. And secure email allows for richer exchange with patients in ways that can serve their convenience and mine.

It is increasingly true that IT functions as the nervous system of health organizations. It shapes our capacity to communicate with patients and colleagues. At its best IT enables wide communication combined with privacy protections. It can enhance or impede the quality of clinician-patient relationships.

Those of us who work with organizations on the ethical quality of their environments have learned how important it is for ethics and compliance to work together. Halamka shows us how IT must also be part of that equation.

Sunday, October 21, 2007

Spurious Reasoning about Pharmaceutical Ethics

A recent New York Times Op Ed by Peter Pitts, President of the controversial Center for Medicine in the Public Interest, attacks the idea of federal funding for studies that compare drug effectiveness in terms that will soon show up in drug company lobbying.

In a breathtaking piece of spurious reasoning, Pitts argues that because Medicare would probably not pay for costlier medications if cheaper ones were equally effective – an enlightened and fondly-to-be-hoped-for policy – it is a conflict of interest for the National Institutes of Health and other government agencies to fund comparative effectiveness studies.

It is entirely reasonable to criticize specific comparative effectiveness studies on methodological grounds. That is what science is all about. But Pitts dismisses the very concept of comparative effectiveness studies as “flawed.”

Pitts speaks of “cost concerns” as if caring about cost is the devil’s work. He is dead wrong. To make health care more widely available, to fund other social priorities, and to allow U.S. industries to be more competitive, we need clinically informed, ethically guided health care cost containment. Ethical physicians should join together to set limits on which drugs will be paid for by insurance funds, and to ensure that a robust process for appeals and policy revision is in place.

Pitts argues against cost containment by invoking the bogeyman of Medicare “forc[ing] doctors to prescribe only the drugs that Medicare will pay for — not the ones that are best for the patient.” The implied premise is that whatever any individual physician prescribes is, by definition, what is best for the patient. No informed person really believes this. There is huge variation in prescribing practices. Evidence is one source of prescribing behavior. Patient demand, often fueled by direct to consumer advertising, is another. Drug company sponsored dinners, speakers, seminars, and holidays, is still another.

We can’t leave the key to spending insurance funds in the hands of every individual physician without oversight. That oversight should come from expert medical guidance. Fair process in setting needed limits is what a Center that is truly “for Medicine in the Public Interest” should be lobbying for, not anything goes prescribing.

The fact that the Center for Medicine in the Public Interest is partly funded by drug companies does not invalidate Pitts’s arguments. But the combination of spurious arguments that favor unbridled prescribing and drug industry funding does not pass the sniff test.

Saturday, October 20, 2007

Globalism and medical ethics

This morning my Google Alert for "medical ethics" brought an article about patient-doctor mediation to my attention. The creator of the program explained:

"Studies have shown that patients often claim or sue because they are poorly informed about the benefits and risks of treatment, and are not given satisfactory explanations following adverse outcomes of treatment. Patients also sue because they perceive their doctors as uncaring or insensitive to their needs."

The reason I quote this is geography, not content. The speaker's perspective has been part of U.S. medical and nursing education for decades. The quote, however, comes from Heng Chee, the minister of health in Singapore.

Health care is increasingly a global process. Drugs and devices are part of international commerce. Health personnel migrate -- largely from developing to developed economies. Developing countries compete for medical tourism customers. And more.

Minister Heng Chee's comments suggest that as economies develop, as has happened in Singapore, citizens expect informed consent, respect for patient autonomy, and a more collaborative/less parentalistic clinical relationship. The U.S. has been in the lead in conceptualizing these values. We have much to teach.

At the same time, there is much for us to learn. Some years ago, on a visit to Benares Hindu University Hospital in India, I saw what I took to be a nurse lovingly combing the hair of a psychiatric patient. When I asked about the remarkable "nursing care" the psychiatry resident who was guiding me and my wife around the hospital explained that the "nurse" was the patient's mother, and that families accompanied patients to the hospital. When we -- guided by the U.S. preoccupation with autonomy -- asked the resident whether patients might be concerned about privacy, he didn't understand our question. Patients feared extrusion from the family, not loss of privacy. The family presence, he reported, was largely reassuring.

We can teach a lot about autonomy values. But we have much to learn about community!

Friday, October 19, 2007

Ethics, Democracy, and Teen Age Birth Control

If you don’t already know that on Wednesday night the Portland, Maine school board voted to allow prescription of birth control without parental knowledge at a middle school health clinic, you are leading a sheltered life.

What struck me in the story was the thoughtful and civil-seeming debate that occurred at the school board’s open hearing. The question elicited fervently held opinions. Reasonable people disagreed. Everyone had their say before the board voted 7-2 in favor of allowing the clinic to prescribe.

Democracy isn’t just about voting. The distinctive feature is public deliberation in which citizens can be heard. (Amy Gutmann and Dennis Thompson explicate the theory behind this perspective in their seminal 1996 book “Democracy and Deliberation.”) I hope that at least some of the Maine parents who were disappointed by the outcome felt that their perspectives were considered respectfully even though their viewpoint didn’t prevail.

By chance my posting about health care rationing on the morning of the day the school board met spoke about how we will not be able to make our health system affordable or provide coverage to all without being “able to conduct vigorous debate and accept disappointing conclusions.” The heartening story from Maine shows that with effective public leadership this can be done.

I don’t know if the Portland decision was right or wrong. That’s the whole point. Reasonable people will disagree on many decisions that health systems must make. But unless we can disagree, debate, decide, and move on, we will continue to have out of control health costs and nearly 50 million uninsured.

Wednesday, October 17, 2007

Nike, Barney Frank, and Health Care Rationing

Every society rations health care. Even in a country as wealthy as the U.S. there are more good things that could be done than we are prepared to pay for. As important as health care is, it is not the only important social good. Limits must be set. The ethically relevant issue is how a society conducts the process. The U.S. rations by leaving 48 million without insurance and by asking our complex mix of public and private insurers to find ways to set limits, preferably without acknowledging that they are doing so.

Two recent New York Times articles sharpened my sense of why honesty about rationing is so difficult in the United States.

Direct to consumer (DTC) advertising via traditional media – largely television and print – is already highly effective in driving consumer demand for costly branded products. “The New Advertising Outlet: Your Life” describes how Nike and other companies use the Internet for sophisticated targeting of individuals in relation to their specific interests. DTC is showing up in Second Life and other cyber fantasy spaces. The new techniques will drive ever more consumer demand.

More consumer demand will require more supple ways of setting limits, but “Liberal Base Proves Trying to Democrats” tells a bizarre story about how our political process is going in the opposite direction. Congressman Barney Frank, a leading liberal and gay activist, is being attacked by gay rights organizations for removing “gender identity” from the Employment Non-Discrimination Act. Barney (disclosure: I am a yellow dog Barney Frank supporter) has done this to gather more support for protection of working rights for gay men and lesbians. He concluded that whatever chance the bill has for garnering support would be undone by making it cover transsexuals and transgendered individuals.

To set limits a society must be able to conduct vigorous debate and accept disappointing conclusions. The Barney Frank story, like the preposterous political grandstanding that marred the end of Terri Schiavo’s ordeal, shows how much we have to learn to be able to set and accept limits chosen in a fair and thoughtful manner.

Barney Frank summarized the problem this way – “There is a tendency in American politics for the people who feel most passionately about an issue, particularly ones that focus on a single issue, to be unrealistic in what a democratic political system can deliver, and that can be self-defeating.”

Monday, October 15, 2007

An Organizational Ethics Decision-Making Process

To my chagrin I only recently came upon Bill Nelson’s elegantly practical article “An Organizational Ethics Decision-Making Process.” The eight step model Nelson presents will be useful for anyone concerned with the interface of management and ethics:

1. Clarify the ethical conflict
2. Identify all of the affected stakeholders and their values
3. Understand the circumstances surrounding the ethical conflict
4. Identify the ethical perspectives relevant to the conflict
5. Identify different options for action
6. Choose an option and make the reasoning public
7. Implement the decision
8. Review the decision and modify it as needed

The eight steps are common sense, not rocket science. But achieving a more robustly ethical climate within an organization requires exactly the kind of systematic and practical application of ethical thinking that Nelson describes.

Nelson’s model is part of an ethics toolkit he helped the American College of Healthcare Executives develop. I will write about the toolkit in a future posting, and I encourage readers to share their own approaches to decision-making about ethical issues.

Friday, October 12, 2007

Resolving Moral Conflict about the Homeless

When I saw the title “Los Angeles to Permit Sleeping on Sidewalks” in yesterday’s New York Times, my first thought was “Oh no – the city’s housing program is on the streets!” But the story itself provides a heartening example of how courts that protect the vulnerable and a robust civil society can address the kind of good versus good values conflict seen so often in the health sector.

Down and out people have been flocking to California since before Woody Guthrie wrote songs about hoboes. Los Angeles has one of the highest populations of homeless in the U.S. Cities have a legitimate interest for wanting sidewalks to be free of sleepers, and to that end the LAPD had been conducting sweeps to move homeless folks off the streets.

But homeless people have a legitimate interest in access to affordable housing, and homelessness is not a crime. In 2006 the Federal Court of Appeals agreed, and determined that "punishing involuntary sitting, lying, or sleeping on public sidewalks that is an unavoidable consequence of being human and homeless without shelter" violated the Eighth Amendment prohibition of cruel and unusual punishment.

Now the L.A. City Council and the ACLU have reached a compromise. Los Angeles will stop enforcing the law against sleeping in the streets until it builds 1,250 new units of affordable housing. The compromise recognizes the legitimate interest of the homeless for housing and the city for sleeper-free streets.

At a distance this story looks like democratic process at its best. The Bill of Rights reminded us that cruel and unusual punishment is evil and must not be allowed. A quintessential component of civil society, the American Civil Liberties Union, represented the homeless in an effective manner. Los Angeles committed itself to a more humane approach to homelessness. And another component of civil society – the Los Angeles Coalition to End Homelessness and Hunger – criticized the compromise as providing too little housing, warned against the possibility of future police sweeps, and promised to monitor the city’s conduct.

Let’s hope that our next national administration shows this kind of respect for core values and this kind of dexterity in adjudicating moral conflict.

Wednesday, October 10, 2007

Celebrities, Privacy, Punishment & Mercy

A New York Times article “Hospital Workers Punished for Peeking at Clooney File” reports that 27 employees of Palisades Medical Center in New Jersey were suspended for a month without pay for accessing actor George Clooney’s medical records when he was hospitalized after a motorcycle accident.

This is a no-brainer ethical violation. Medical records are private. Only the patient and those directly involved in his care should access them. Hospitals are required to train employees in privacy expectations. Assuming that this was done the penalty is severe, but not outside the realm of fairness.

The union called the penalties “an overreaction” and defended the 7 nurses it represents by saying that although they looked at the records, they did not divulge the contents. This “defense” overlooks the fact that whether or not the nurses tipped off the press, their reading the record was in itself a serious violation of professionalism.

I admire Clooney’s gracious response: “While I very much believe in a patient’s right to privacy, I would hope that this could be settled without suspending medical workers.” He emphasizes the value that is at stake but proposes mercy. If I were the hospital CEO I would undo the suspensions if (a) each individual publicly apologizes to Clooney, (b) is identified as having violated core values and (c) uses their own experience and learning as part of orientation for new employees and other forms of education about the importance of privacy.

Monday, October 8, 2007

Virtual Reality and the Ethics of Cyberspace

A recent Washington Post article “Real Hope in aVirtual World" tells how “rehabilitation” in cyberspace has helped Susan Brown , a 57 year old woman, recover from a severe stroke, Roberto Salvatierra a 32 year old man in Costa Rica, in his struggle with agoraphobia , and John Dawley III, who has Asperger syndrome, improve his reading of social cues.

Harnessing virtual reality for therapy isn't new. Three years ago Scientific American described systematic studies how a virtual SnowWorld reduced pain in burn patients. The Navy put $4 million into virtual therapy experiments as treatment for PTSD.

The Internet is the wild west of today's health care. Caveat emptor -- let the buyer beware -- is the guiding ethical principle for those who surf for therapy in the virtual world. Health professionals can't control what happens on the web, but since many people turn to doctors and nurses for guidance clinicians should educate themselves enough to give advice about how to assess the ethical quality of cyber-offers.

Not many of us can do this yet but we need to learn. We give advice about what medications can be trusted and when a heavily advertised nostrum is quackery. Patients will soon start to expect real guidance about the virtual world.

Thursday, October 4, 2007

Healthy Mothers, Healthy Babies, Fishy Advocacy

This morning Science Daily, a website "for the latest research news” wrote “A Maternal Nutrition Group comprised of top professors of obstetrics and doctors of nutrition from across the country, in partnership with the National Healthy Mothers, Healthy Babies Coalition (HMHB), unveiled recommendations for seafood consumption during pregnancy.” If you went to the Healthy Mothers, Healthy Babies website you found “Brainy Babies, Healthy Kids,” warning pregnant women about the dangers of eating too little fish during pregnancy.

This was presented as fact, not opinion.

The recommendations were a response to the Institute of Medicine’s October 2006 report “Seafood Choices: Balancing Benefits and Risks.” The IOM noted that fish contain beneficial ingredients – high quality protein and omega-3 fatty acids. But fish can also contain toxins, especially mercury. The IOM concluded that women who are or may become pregnant or who are breast feeding “can safely consume 12 ounces per week.”

The Healthy Mothers, Healthy Babies press release turned the IOM guideline on its head and “recommended that women who want to become pregnant, are pregnant or are breastfeeding should eat a minimum of 12 ounces per week of fish like salmon, tuna, sardines and mackerel, and can do so safely.”

Luckily, National Public Radio was on its toes, and determined that Healthy Mothers, Healthy Babies had received $60,000 from the National Fisheries Institute to promote the “new guidelines.” I heard the story on the evening news.

I don’t claim to know the ultimate truth about fish intake during pregnancy, but I do know about the ethics of advocacy. The National Fisheries Institute is entitled to disagree with the Institute of Medicine, but it should speak for itself directly and not hide behind the skirts of Healthy Mothers, Healthy Babies. And Healthy Mothers, Healthy Babies has – at best – made a terrible misjudgment about conflict of interest, and at worst has sold whatever trust it had earned for $60,000.

Consumer empowerment and consumer advocacy have been positive forces for the U.S. health system. But this story, which emerged in less than 12 hours, shows how an unhealthy alliance between industry and "consumers" can smell like rotten fish.

Wednesday, October 3, 2007

Managing Long Term Care Insurance

A new national battle about managed care is starting to emerge. This time the combat will be about how insurers market and manage long term care insurance.

Charles Duhigg of the New York Times fired the first journalistic salvo six months ago in his powerful article “Aged, Frail and Denied Care by Their Insurers.” Since then the House Committee on Energy and Commerce and the Senate Finance Committee have launched investigations of the long term care industry.

The aging population makes long term care a central social issue. Not surprisingly, insurance to offset the cost of long term care is a growing sector of the insurance market.

Even in a country as wealthy as the U.S. demand for services virtually always exceeds what the available resources will supply. To meet the needs of an insured population limits must be set, and limits are inherently painful.

Most people, however, understand that limits are part of life and are prepared to accept limits set by a legitimate authority in a fair manner. In a 1998 Health Affairs article on “The Ethics of Accountability in Managed Care Reform ” Norman Daniels and I called for greater transparency in health care limit-setting, open deliberation that explicitly considers the needs of individuals (the “numerator”) and the needs of the population that makes up the insurance pool (the “denominator”), and a robust appeals process. We called this “accountability for reasonableness,” and argued that without it limit-setting will not be seen as legitimate or fair.

Congress can make a real contribution if it (a) acknowledges the need for limits and (b) proposes new and better ways of managing the limit-setting process. Bad apple companies and practices must be rooted out. But punishing the Enrons and Tycos of the insurance world will not take away the need for limits. I hope Congress helps our body politic grow up rather then allowing us to pretend that if we only get rid of the bad actors we will be able to ascend a limitless rock candy mountain.

Monday, October 1, 2007

Should Sex-Change Surgery be Tax Deductible?

Rhiannon O’Donnabhain, a 64 year old former construction engineer, is suing the IRS for denying a tax refund for sex-change surgery. The IRS concluded that the surgery was “cosmetic.” O’Donnabhain claims that it was “medically necessary.”

How should questions like this be decided?

Today’s Washington Post story shows that the case illustrates a fundamental flaw in how we in the U.S. think about health care.

The IRS criteria for deductibility make the cost of any “disease…defect or illness” tax deductible. This leads to the absurd conclusion that even if a treatment cost one billion dollars it would automatically be covered by a deduction, as long as it was for a disease, defect or illness! As a result, in order to deny the deduction the IRS has to demean O’Donnabhain by calling her treatment “cosmetic.” By any reasonable definition of “cosmetic” it isn’t.

But the medical expert testifying for O’Donnabhain is equally confused about fair decision making. After correctly noting that “it’s absolutely clear that transgender identity is a condition discussed in diagnostic manuals” the expert asked “when did the IRS suddenly become physicians?” The question implies that physicians are entitled to determine tax policy (or insurance coverage). They aren’t.

No society can, will or should pay for every effective treatment for every disease, defect or illness. As important as health care is it is not the only important societal priority. Deciding what insurance should cover and what should count as a tax deductible expense is ultimately a political and moral decision about what a society feels it owes to its members.

In “Setting Limits Fairly: Learning to Share Resources for Health” Norman Daniels and I discuss how to decide questions about insurance coverage and tax deductibility. We argue that fair social process requires deliberation about individual needs (O’Donnabhain’s condition), medical facts (what we know about gender identity disorder and its treatment), available resources, and alternative resource needs in health care and other sectors.

Better understanding of fair limit setting and more honesty about the reality of limits would allow the IRS to deny deductibility without demeaning O’Donnabhain’s treatment as “cosmetic.” Likewise, physicians would understand that their expertise entitles them to make diagnoses but not to unilaterally decide what insurers or public programs should pay for.

My own view is that treatment of gender identity disorder should be eligible for insurance coverage and tax deductibility. But the court will do best by focusing on the need for a fair decision making process rather than taking on itself the responsibility for saying yes or no.