Is Gaming the Transplant List an Ethical Dilemma?

Originally published on June 28, 2016, on the Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics Bill of Health blog.

NPR recently published a thought-provoking piece discussing an ethical dilemma doctors face when treating patients in need of organ transplants. Transplant list priority is designed to depend upon the relative sickness of patients, allocating organs to those who need them most. However, instead of lab results or other direct measures, the list uses the treatment a patient is receiving as a proxy for her condition. As a result, doctors have the ability to move their patients up the list by prescribing — or over-prescribing — more extreme and invasive treatments.

It’s understandable why this temptation exists — doctors go into medicine to heal, and I imagine it’s difficult to refrain from taking an action which could very well save a patient’s life. But should this be an ethical dilemma?

Bumping a patient up the transplant list could certainly save a life, but that life could come at the expense of another’s. The problem is that organ transplants are inherently zero-sum — if one patient goes up on the list, another must come down. If one person gets an organ, that means another doesn’t. Furthermore, over-treating to influence transplant priority has consequences that reach beyond any individual patient, potentially furthering inequality in the transplant system and contributing to unsustainable health care spending.

Influencing transplant priority by prescribing unnecessary, intensive treatment may exacerbate the inequality already baked into the transplant system. Transplant lists are localized, and organs donated in particular areas are made available to local medical centers before being offered to hospitals elsewhere. This means that transplant lists in some regions move faster than those in others. Patients are allowed to register for more than one list, but doing so is expensive, requiring the ability to travel quickly around the country and pay the tens of thousands of dollars it costs to receive the necessary tests for multiple transplant list approvals. A Columbia University study published last year found that patients on multiple lists tended to be wealthier and get transplants faster than their single-list counterparts.

The patients that can be moved up the transplant list through over-treatment will tend to be those with more robust insurance, who have better access to treatment facilities with more intensive care capabilities. In other words, they’ll tend to be wealthier than patients without access to the same coverage or treatment options. Wealthier patients can already get transplants more quickly  — and over-treatment allows them to ascend those lists even faster. While it’s true that some over-treated patients will not be in the pool of those wealthy enough to afford multiple transplant listings, the practice still furthers the distribution of organs away from the under-insured who can’t afford or access the extra care.

Even if the benefits of ascending the transplant list through over-treatment were distributed equitably, it still puts unnecessary burden on a health care system struggling under its own weight. It’s no secret that health care spending in the United States is out of control, and one of the main drivers of spending growth is over-utilization. From emergency room visits for non-emergency care to defensivediagnostic testing, many unnecessary medical services are ordered and paid for every day. There are many reasons for this, and it has garnered significant attention in the fight to control health care spending. Normalizing the practice of over-treating patients to move them up the transplant list piles unnecessary costs onto an already strained system, and because the treatment needed to bump a patient up the list is intensive and often invasive — sometimes requiring stints in the ICU — it’s also incredibly expensive.

New rules further specifying the treatment needed to advance on the transplant list are being considered in order to reduce this practice, but they still rely on treatment as a proxy for need, and thus may only lead to increasingly extreme over-treatment. At the end of the day, no system will be tamper proof. There will always be a way to influence a patient’s chances of receiving a transplant. So what do we do?

Instead of trying to foolproof the transplant list, perhaps we should push for a cultural shift in which the possibility of increasing transplant priority through over-prescription isn’t seen as a moral dilemma, because providers and patients recognize an obligation to the health care system as a whole. Certainly physicians should be zealous advocates for their patients, and there should be avenues through which a physician can make appeals on behalf of her patients if she feels the current priority criteria don’t fully capture their needs. However, when viewed in light of the negative impact it can have on the entire health care system — not to mention the immense cost it has on the patients that will inevitably be bumped down the list as others are bumped up — maybe the decision not to increase a patient’s transplant priority through over-treatment shouldn’t be such a hard one.

More broadly, this holistic perspective would help in many areas of health care currently plagued by misaligned incentives. Antibiotics, for example, are over-prescribed to appease individual patients at the risk of contributing to antibiotic resistance, and the practice of defensive medicine continues to proliferate, undermining efforts to reduce overall health care spending. The more health care providers, administrators, and patients factor these broader externalities into everyday decisions, the better off the entire system will be.

Medicine is an art — the individualized craft of healing. But health care is a system — an interconnected web in which actions have consequences far beyond any one patient. Zealous advocacy on behalf of individual patients is a critical component of effective care, but perhaps it shouldn’t come at the expense of other patients or the system as a whole. As newly minted physicians recite in the Hippocratic Oath, “I will remember that I remain a member of society, with special obligations to all my fellow human beings, those sound of mind and body as well as the infirm.” Over-treating for transplant priority seems out of sync with this commitment to those beyond the exam room. It’s understandable why this feels like a moral dilemma, but maybe it shouldn’t feel like one. The decisions made in the health care system impact all of us, and we need to remember that, even when — especially when — it’s difficult.

The AMA Should Forget the Dickey Amendment — For Now

Originally published on June 28, 2016, on the Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics Bill of Health blog.

Recently, the American Medical Association (“AMA”) passed an emergency resolution at its annual conference declaring gun violence a public health crisis and calling for both restrictions on access to firearms and increased research into gun-related violence. In its announcement, the AMA noted that it plans to “actively lobby Congress to overturn legislation that for 20 years has prohibited the Centers for Disease Control and Prevention (CDC) from researching gun violence.”

The AMA’s decision to publicly take a strong stance on gun violence could have a substantive impact on the national conversation. The group represents one of the most powerful voices in health care policy. According to the Sunlight Foundation, the AMA is a “political powerhouse,” raising $1.3 million through its PAC during the 2014 election cycle and spending almost $22 million on lobbying in 2015 alone. To put that in perspective, the National Rifle Association — the nation’s foremost gun rights organization — spent $3.6 million on lobbying that year. Admittedly, the AMA — unlike the NRA — is a multi-issue organization, and it remains to be seen whether it will throw its financial heft behind this new position, but the fact that there is a powerful new party at the table has made some hopeful that members of Congress will start to think more seriously about finding ways to reduce gun violence.

While the AMA’s announcement has come as a welcome boost to proponents of gun control and gun violence research, it plays into a common misconception of existing law, which may raise unnecessary barriers to increasing CDC research in this area. The law the AMA is targeting as “prohibit[ing] the Centers for Disease Control and Prevention (CDC) from researching gun violence,” is the so-called “Dickey Amendment” — a budget provision passed in the federal government’s 1997 omnibus spending bill. The problem with the AMA’s framing is that the Dickey Amendment doesn’t actually bar the CDC from researching gun violence. Rather, it bars the CDC from using any federal funds to “advocate or promote gun control.” While this misconception regarding the Dickey Amendment is common — many mainstream media outlets have referred to the provision as a ban on gun violence research — it’s counterproductive and potentially harmful in the fight to promote more robust public research.

From a practical perspective, this framing is unfortunate because it implies that the Dickey Amendment has to be repealed for the CDC to conduct gun violence research, which — as Senator Tom Carper (D-DE) noted in his recent letter to the CDC — is simply not the case. The CDC can and does perform firearm-related violence research. The main obstacle to more research is not the Dickey Amendment — it’s the fact that Congress no longer appropriates enough money to the CDC for these studies. As CDC spokeswoman Courtney Lenard put it, “It is possible for [the CDC] to conduct firearm-related research…But our resources are very limited.”

Convincing Congress to allocate sufficient funds to the CDC for gun violence research — something that hasn’t been done in 20 years — will be a hard enough mountain to climb. Repealing the Dickey Amendment is a noble goal, but it’s a battle that need not be fought, and it may even make securing funding more difficult, as moderate congressmen could have concerns that research performed without the safeguard of the Dickey Amendment could become too political. Instead of waging a two-front war, the AMA should focus on securing funding for gun violence research and leave the Dickey Amendment for another day.

The more troubling problem with the mischaracterization of the Dickey Amendment as a ban on gun violence research is rhetorical. In equating “advocat[ing] and promot[ing] gun control” with “researching gun violence,” the AMA plays into efforts by gun control opponents to construe objective analysis of the societal impact of firearms as political propaganda. While stricter gun laws may be the natural conclusion from the results of CDC gun studies, it’s important to separate the acquisition of knowledge from the use of that knowledge to advance a normative position. Examining the impact of firearms from a public health perspective is not an argument for or against anything. It is simply a means by which arguments can — and should — be informed.

This is not to say that scientists and researchers are completely disinterested. There are plenty of forces that distort what studies are done and which of those are published — and I imagine these forces are even stronger when it comes to government research. However, the overt politicization of knowledge — the conflation of answering an empirical question with making a normative argument — is damaging to our national discourse, and it hinders our ability to make informed decisions as a society.

The newly announced position of the AMA on gun control could be a substantial step towards mitigating the gun violence epidemic, and that in and of itself is something to applaud. However, by refining its position with respect to the Dickey Amendment, the AMA could streamline its efforts towards securing funding for research the CDC is already empowered to conduct, and it could avoid furthering the harmful rhetoric conflating gun violence research with anti-gun advocacy.

The Dickey Amendment should absolutely be repealed someday, as the CDC should be able to advocate for sensible gun control policies, but the perfect shouldn’t be the enemy of the good. The CDC could be doing potentially lifesaving research as we speak, and the AMA should sidestep the rhetorical trap set by gun control opponents and focus on funding that research before wading into the far more contentious battle over the Dickey Amendment.