Revulsion is not an argument; and some of yesterday’s repugnances are today calmly accepted — though, one must add, not always for the better. [...] In crucial cases, however, repugnance is the emotional expression of deep wisdom, beyond reason’s power fully to articulate it.
If I held myself to such high standards, I would tell you that I find the thrust of what I see as mainline bioethical thought to be “icky,” and from there res ipsa loquitur. However, I’d like to think that my distaste has more than mere “revulsion” behind it, and as such the matter is not so easily disposed of.
In the “standard” ethics and professionalism lectures, medical students are taught that medical ethics rest on three foundational pillars: non-maleficence (“do no harm”); beneficence (“do what’s best for your patient”); and autonomy (“act in accordance with your patient’s wishes”).
Who decides what’s best for the patient, or what constitutes harm? Logically, it should be the patient! When the stakes are high, so too should be the barriers for a physician to substitute his or her goals and values for the patient’s.
SUMS has a thriving medical ethics program, and we’ve had the opportunity to hear clinicians and medical ethicists from SUMS and from farther afield talk about ethical conundrums they’ve seen on the wards. Every presentation has shared one feature, without fail: it’s only an ethical conundrum (usually meriting a call to the bioethics committee) when the physician doesn’t agree with a patient’s choice, and has been unable to successfully use persuasion or coercion to change the patient’s mind.
This seems like a trivial observation at first. After all, why call the ethics committee to adjudicate a matter where the physician and patient are in perfect agreement (aside from rarer edge cases where this happens, usually involving experimental procedures)? It makes perfect sense!
What this means though, is that the medical ethicist has become the person to provide cover for a physician to override the patient’s autonomy. By virtue of selection bias in the cases they are asked to adjudicate, and the ever-present threat of regulatory capture, the role of “medical ethics” runs the risk of devolving into Paternalism 2.0. “We know what’s best for you, and if you don’t believe us, we’ll make you.” What’s more, when the medical ethicist is nothing more than the cudgel with which the physician forces his goals onto his patient, what claim does the ethicist then have to support his monopoly on decision-making in this sphere?
Admittedly, this image of medical ethics is a caricature. But to see the danger that lies in store, look no further than their cousins: the bioethicists.
At every turn I can think of, bioethics has established itself as the true “Ideology of ‘No.’” Whether dealing with BRCA gene testing for breast cancer susceptibility, assisted reproduction technologies, APOE4 screening for Alzheimer’s susceptibility, or “cosmetic” fetal ultrasound, mainstream bioethical opinion always seems to come down on the side of denying information to patients. Hardly the patient-empowering mindset that marked the field’s nascent days.
So why has the medical ethics / bioethics enterprise come to undervalue patient autonomy so extensively? I offer two preliminary hypotheses.
First is the fact that medical ethics and bioethics are situated in an academic-institutional environment that usually leans left-liberal (Progressive). Whether the institution makes the people, or the people make the institution, it comes out to the same thing: the setting is one that inculcates a predilection for top-down technocratic control. I think that this assessment is valid, regardless of what you think of the merits of different political philosophies.
The second one is, in my mind, more interesting. Public choice theory reminds us that bureaucrats, leaders, institutions, and their people do not exist in a world devoid of incentives and personal agendas. As an ethicist, when you say “no,” you entrench the need for your services… there needs to be someone with the authority to say “yes,” and what better way to establish your authority then by saying “no?” When you posit increasingly more complex models for evaluating ethical dilemmas — “autonomy, beneficence, and non-maleficence” just don’t cut it — you create an institutional need for someone with expertise in dealing with these complex rules to act as interpreter, and thereby increase your own power and prestige. Giving full weight to patient autonomy would undermine the need for your services.
This isn’t to say that ethicists make decisions with an explicit eye to entrenching their influence in the medical setting. It is, however, a reminder that we should always be asking ourselves: quis custodiet ipsos custodes? Who watches the watchers?
That, and the “wisdom” of repugnance is only as valid as the reasoning that supports it. Having “a bad feeling” about something doesn’t cut it when lives are on the line.
I have been asked many times to register for bone marrow donor registries. I’m told that there are severe shortages of potential donors from my ethnic group, and that ethnicity correlates with the probability of successful match. I’ve been solicited again and again over email listservs in college and here at medical school, reminded of the life-saving potential of a simple cheek swab (and subsequent marrow harvesting, if matched). One particularly aggressive college classmate told the assembled masses that ”choosing not to donate is essentially deciding to let somebody die. And, yes, you are responsible for that.”
Strong words, those.
However, I have never been asked to register as a bone marrow donor by ”flirtatious models in heels, short skirts, and lab coats.” Not that I would have found that approach particularly persuasive.
What might seem, at first glance, like an innovative approach taken from the playbook of marketing professionals, has instead been depicted as a nefarious attempt to scam insurers out of around $4000 per cheek swab tested.
“They got people to do this without telling them it could be a charge of $4,300 against their insurance,” he said.
New Hampshire passed a law in 2006 requiring insurers to pay for tissue-typing tests for potential bone marrow donors. But at the time, Mr. Boffetti said, proponents told lawmakers that each test would cost $100 or less.
How absurd! This group should be lauded for their efforts to increase the pool of potential bone marrow donors! That non-profits and charities are adopting the for-profit sector’s successful marketing techniques is a sign of progress, not nefarious intent!
Here’s a thought for New Hampshire’s ”senior assistant attorney general:” there would be no need to investigate and vilify this group for…. I don’t even know exactly. The article doesn’t imply they’ve done anything illegal or unethical. They seem to have simply billed insurers as the law allows them to.
This is one of those problems that seems like it could only be caused by idiotic regulation. Getting a cheek swab and tested for bone marrow donor registration is clearly not a risk against which one needs to be insured. It’s an elective procedure that has absolutely zero health benefit for the insured party. New Hampshire’s legislators, in their infinite wisdom, decided to mandate coverage anyways.
And somehow the Times portrays the models as the most unseemly part of this saga.
As the New York Times, its Prescriptions blog, and the San Francisco Chronicle have been reporting, there’s been a scandal of slightly more-than-minor size involving the UCSF Chancellor’s stock holdings. Dr. Susan Desmond-Hellmann — the oncologist at the head of UCSF’ — disclosed shareholdings in the area of $100,000 in Altria, the company formerly known as Phillip Morris that makes most of its money from tobacco-related products. Since that disclosure, followed promptly by divestment, Dr. Desmond-Hellmann’s holdings in health products/pharmaceutical companies and fast food companies — this time to the tune of millions of dollars — have come to light. The investments were apparently made by a third-party financial advisor without her knowledge, and this advisor has since been instructed to purge her shareholdings in alcohol, tobacco, and firearms manufacturers.
Reading these articles prompted me to consider one of my earliest posts here, in which I argued that there is nothing unethical, unseemly, or untoward about life/health insurance companies holding shares in fast food companies. Does the same argument apply to Dr. Desmond-Hellmann’s holdings?
Yes and no.
In my mind, the most problematic of her stocks are the pharmaceutical and health products companies. These firms are probably vendors or research sponsors at UCSF, or have the potential to be. The Chancellor’s shareholdings in these firms are substantial, and the potential for a conflict of interest is definitely present. As one of the ethicists quoted by the Chronicle points out, recusal from decisions that would trigger this conflict may be all that is required, but continuing to hold the shares certainly creates the appearance of impropriety. While some have pointed out that physician-industry relationships aren’t always eeevvvilll, as others would have us believe, there is a difference between productive collaboration of the sort Dr. Rich discusses and passive shareholding of the sort at question here.
I personally find her other shareholdings to be less objectionable. Alcohol, firearms, soft drinks, and fast food are all legal products that can be used or abused, depending on who is doing the ab/using. I see nothing intrinsically “evil” about them that should force medical leaders to steer clear. Many of these firms (McDonalds, Pepsi, etc.) are also components of major equity indices, and as such may well have been chosen for that reason. It’s highly unlikely that they will be directly involved with UCSF as vendors, donors, or sponsors, though I could be wrong about this. Tobacco, however, doesn’t pass the smell test with me, especially not when we’re discussing an oncologist. Arguably, it’s the only one of the products in question that is inescapably harmful regardless of how it’s used. Of course, I would be remiss if I didn’t point out that there are lots of anti-smoking groups out there who have let their love for tax revenue outweigh their desire to reduce smoking. This doesn’t make Dr. Desmond-Hellmann’s Altria holdings more palatable, in my view. It just places them in the context of “how worse could it be/what company is she in.”
There is a growing obsession with rooting out conflicts of interest in healthcare, often under the rubric of reducing “waste and fraud.” Much of this is a good thing, though as people like Dr. Rich point out, this obsession comes with a risk of harmful side effects. More and more attention seems to be paid to “who owns which shares.” Given that companies like McDonalds, Pepsi, and Altria are major blue-chip companies that are components of the DJIA/S&P 500 — thus likely to be held by many people and institutions — and targets for public health activists, it will be interesting to see how this plays out in the future, and where the line will be drawn for medical professionals who want to be perceived as “ethical investors.”
Fun tidbits, health-related and otherwise, from around the ‘tubes:
- Unconfirmed: 15th century world maps labeled the location of what would later be called “America” with the warning “Here There Be Litigiousness.” WhiteCoat links to an AMA report that looks at key differences between the US medmal system and those of other developed countries, with an eye to what differences may or may not translate into improvement in the US. Great Z’s brings us the details of a case in which drugmakers were found liable for Hep C contracted by patients whose physician reused needles when administering the drug. A guest post at KevinMD gives tips on how to survive a deposition during a medical malpractice case. Edwin Leap reminds us that a large part of being a physician is the ultimate accountability for patient care… and that this accountability has to be compensated.
- Related to accountability is trust. Coyote Blog expresses his confusion about people who distrust large corporations, but don’t extend that same skepticism to government. Hit & Run discusses survey results showing that under-30s trust government to do what’s right in higher numbers than older generations. They also hint that the usual increase in cynicism might not hold for my generation… scary thought. Continuing in the libertarian vein, Megan McArdle explains the difference between liberals and conservatives in terms of the different sets of liberties that they care about (or not). There’s also this short, but entertaining, interview with the mayor of Las Vegas… who is sponsored by a gin brand, apparently.
- The Presidential Cancer Panel recently released a report on environmental carcinogens that set off some minor controversy. Here are reactions from Science-Based Medicine, Reason’s Hit & Run blog (also here), and the Wall Street Journal Health Blog.
- Jason Shafrin at Healthcare Economist runs down the math of running into a terrorist. Bottom line: don’t sweat it.
- Greece and the Euro continue to be in the news: what does it mean for us on this side of the pond? Greg Mankiw links to an article that claims that crises such as that in Greece show that we cannot have democracy, nation-states, and globalization together. Reason talks debt, deficit, inflation, and the future of America’s fiscal situation. On a lighter note, Mark Perry shares a video showing what you can learn about economic communities if you literally follow the money.
- Hit & Run did well this past week, it seems. Here’s another post of theirs arguing that all the nutrition programs in the world won’t work if they don’t take into account the role of values, preferences, and tastes in shaping diet.
- The Health Affairs blog presents a proposal to “Reinvent The Primary Care Workweek.” Importantly, they realize that the quality of the job is at least as important as payment in getting more students to choose primary care fields. Of course, a patient load that small means that you need more people to join the ranks pretty quickly after implementing the model. Seems like a good idea, but we’ll see what happens.
- There was lots of quality blogging about insurance, as well. InsureBlog looks at Massachusetts and finds a classic example of how not to run a health insurance exchange. Prescriptions looks at what the PPACA requires of self-funded employer plans: fortunately, it doesn’t seem to be all that much, given that telling employers how to provide a benefit may well result in them not providing it in the first place (the argument is different with insurance companies). Hit & Run points out that insurance regulation involves lots of tradeoffs, even if the regulation’s proponents don’t want to admit it. Finally, David Williams at the Health Business Blog summarizes InsureBlog’s complaints about an all-too-common situation with college-provided/mandated health insurance: it’s terrible.
- Finally for this week, Scott Greenfield brings us a lengthy, compelling, and disturbing story from the Village Voice that takes an inside look into incentives and operations at the patrol level in New York City’s 81st precinct. From a political/legal/libertarian point of view, it’s frightening. If you insist on putting a health policy lens on it, call it what happens when you implement the ultimate pay-for-performance system alongside the ultimate EMR. Enjoy…