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1-2018

Can Rationing Through Inconvenience Be Ethical?

Nir Eyal

Paul Romain

Christopher Robertson Boston University School of Law

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Recommended Citation Nir Eyal, Paul Romain & Christopher Robertson, Can Rationing Through Inconvenience Be Ethical?, 48 Hastings Center Report 10 (2018). Available at: https://scholarship.law.bu.edu/faculty_scholarship/964

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Arizona Legal Studies Discussion Paper No. 19-03

Can Rationing through Inconvenience Be Ethical?

Nir Eyal Harvard T.H. Chan School of Public Health Harvard Medical School

Paul L. Romain Beth Israel Deaconess Medical Center

Christopher Robertson The University of Arizona James E. Rogers College of Law

March 2019

Electronic copy available at: https://ssrn.com/abstract=3358604 Can Rationing through Inconvenience Be Ethical?

by Nir eyal, paul L. romain, and Christopher Robertson

Using burdensome arrangements—application processes, forms, waiting periods, and the like—as a strategy for limiting the use of health care resources has been roundly but uncritically condemned. Under some conditions, it may be legitimate. It may even be preferable to direct rationing.

n an influential essay, Gerald Grumet charac- needed health care. Recent efforts, for example, by terized “rationing through inconvenience” as the American College of Physicians, have sought to a potent but secretive strategy for “slowing and mitigate or eliminate administrative tasks and their I 4 controlling the use of services and payment for ser- adverse effects. vices by impeding, inconveniencing, and confus- However, inconvenience of service use is also a ing providers and consumers alike.”1 Donald Light commonplace rationing mechanism for encourag- similarly decried “practices [that] include rejecting ing socially preferred choices. Consider the following claims in whole or in part for procedural or techni- examples: cal reasons, making the claims process and its rules extremely complex, and [ultimately] inducing claim- • Pascaline Dupas and colleagues found that, ants to give up.”2 For clinicians, the phrase “ration- in western Kenya, combining free provision of a ing through inconvenience” usually evokes wasted chlorine water treatment (a diarrhea prophylactic) time, unnecessary red tape, byzantine bureaucratic with a voucher system that imposes the inconve- systems, escalating administrative expenditures, and nience of having to redeem a coupon at a local even “ambiguity, deception, or harassment.”3 For store screened out 88 percent of those who would patients, inconveniences like paperwork and travel otherwise accept the product without using it.5 can stand as a barrier to using insurance or accessing Similarly, Xiaochen Ma and coauthors found that giving Chinese children a voucher redeemable for eyeglasses in a store “modestly improved targeting Nir Eyal, Paul L. Romain, and Christopher Robertson, “Can Ration- 6 ing through Inconvenience Be Ethical?,” Hastings Center Report 48, efficiency” compared to handing out eyeglasses. no. 1 (2018): 10-22. DOI: 10.1002/hast.806

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Electronic copy available at: https://ssrn.com/abstract=3358604 • Rationing through inconve- medical, religious, or philosophical to cause or has the effect of causing nience can also influence the par- grounds. Several authors have pro- patients or clinicians to choose an ticular health service consumed. posed “making [nonmedical] ex- option for health-related consump- Making a preferred treatment the emptions for immunizations more tion that is preferred by the health default, overridden only with ef- difficult to obtain.”15 Their idea system for its fairness, efficiency, or fort, has been proposed as a way of is to make the legal procedure for other distributive desiderata beyond curbing health expenditure.7 For obtaining exemptions more “ar- assisting the immediate patient. This example, a physician might be re- duous” by, for instance, requiring definition can be unbundled. quired to navigate to the bottom of “a notarized parental statement, First, rationing through incon- a computerized list to find the op- counseling, and health depart- venience is a form of rationing. We tion that would allow her to refuse ment approval,” as some states do. take it as a starting assumption that generic substitution.8 To the ex- They point out that arduous ex- rationing, understood as scarce- tent that a small inconvenience is emption procedures are inversely resource prioritization, is inevitable used to shape preferred consump- related to the rate of nonmedical and, in a society that has goals be- tion, such nudges (recently called exemptions.16 Parents who are yond optimizing health care for in- “effort taxes”9) arguably constitute deeply and genuinely opposed to dividual patients—such as improving rationing through inconvenience. vaccinations may select to undergo societal health care, education, or the inconvenience, while children overall welfare—prudent and fair.17 • An inconvenience, and its ab- of the remainder get vaccinated. Whether in public or private insur- sence, can also affect patients’ choice of provider. Americans rely For clinicians, the phrase “rationing through on expensive specialists much more than patients in other countries inconvenience” usually evokes wasted time and do, in part because waits are lon- unnecessary red tape. However, inconvenience of service ger in other countries.10 About one in five urgent care center users said use is also a commonplace rationing mechanism for they chose their provider because the location was “more conve- encouraging socially preferred choices. nient, compared to other facilities like hospitals, doctors’ offices and In this article, we provide a com- ance pools, health care resources are community health centers.”11 prehensive analysis and a norma- collective. The resulting collective ac- Locating primary care clinics in tive assessment of rationing through tion problems require some system of convenient sites might likewise inconvenience as a form of ration- allocation, whether direct (such as a lure patients with nonemergency ing. We argue that under certain committee decision) or indirect (such conditions away from expensive conditions, rationing through in- as a pricing mechanism or ration- and less convenient emergency convenience may turn out to serve ing through inconvenience). Indeed, departments.12 Ironically, however, as a legitimate and even a preferable the definition holds that rationing a study of pharmacy-based retail tool for rationing; we propose a re- through inconvenience comprises clinics “found that 58 percent of search agenda to identify more pre- only those inconveniences that lead, retail clinic visits for low-acuity cisely when that might be the case or are intended to lead, to otherwise conditions represented new utili- and when, alternatively, rationing appropriate distributions. Distribu- zation and that retail clinic use was through inconvenience remains ethi- tions can be appropriate for their associated with a modest increase cally undesirable. After defining and fairness, efficiency, contribution to in spending, of $14 per person illustrating rationing through incon- social equality, or other societal re- per year.”13 Accordingly, com- venience, we turn to its moral advan- sponsibilities in medical or economic mentators wonder whether other tages and disadvantages over other terms. By contrast, when inconve- convenient, lower-priced options rationing methods. niences lead, or are intended to lead, such as “telehealth” or kiosks of- only to private profit for an insurer fering testing in stores “could also Rationing through whose subscribers are dissuaded from end up leading to overall increases Inconvenience: A Working claiming their moral and legal rights, in health spending, despite being Definition for example, and the inconveniences touted as cost-savers.”14 advance no social good, then they do y “rationing through inconve- not count as rationing through in- • Every U.S. state has a vaccina- Bnience” in the health sphere, we convenience. The reason for thus lim- tion mandate but also has proce- refer to a nonfinancial burden (the in- iting the scope of our investigation is dures for exempting individuals on convenience) that is either intended that when inconveniences serve no

January-February 2018 HASTINGS CENTER REPORT 11

Electronic copy available at: https://ssrn.com/abstract=3358604 good purpose, ethical investigation choice: the reduction in consump- For example, a form may be complex is unnecessary: such inconveniences tion is mediated by the impact on and inconvenient to fill, not inten- only add offense to injury and are ob- whether patients and clinicians tionally but simply because exclusion viously undesirable. choose a treatment and which treat- criteria are genuinely complex or be- Second, other policy uses of in- ment choices they make. This choice- cause the form writer is incompetent. convenience lie outside our ambit. based characteristic is shared by the For example, many “nudges”18 use central form of indirect rationing: An Illustration inconvenience to help individuals financial cost sharing, such as with make choices that are good for them; copays, deductibles, and capitated o illustrate how rationing for example, making it comparatively physician reimbursement.22 In that Tthrough inconvenience interacts harder to purchase junk food can respect, rationing through incon- with, and sometimes dwarfs, direct nudge consumers toward healthier venience is unlike overt, or direct, rationing, we summarize data, previ- foods.19 Without a goal or an effect rationing mechanisms such as alloca- ously reported in the literature, from of allocating scarce resources better, tion criteria and formularies.23 Still, a pharmacy benefits manager.25 The these other uses of inconvenience as illustrated below, direct ration- data covers preauthorization deci- do not count as rationing through ing mechanisms may also function sions concerning whether to allow inconvenience. as rationing through inconvenience. patients access to an expensive drug Third, our definition presumes So can waiting lists. For example, or- for off-label usage, recorded over a inconvenience, by which we mean a gan waiting lists constitute rationing one-year period. These data provide a burden that is not directly financial. through inconvenience inasmuch as one-year snapshot of actions taken in An example of a nonfinancial burden they dissuade consumption by pa- various cases. For simplicity of illus- is losing time (such as by standing in tients who choose not to wait and tration, we treat the case flow as if it line or filling out a long form). Anoth- instead forgo transplantation, seek al- represented a complete set. Although er is putting in effort (by redeeming a ternative treatments, or step up their our discussion is based on real data, coupon to obtain health products or efforts to stay healthy. we offer this as a conceptual illustra- seeing a doctor for a prescription for Fifth, as we define it, rationing tion, not claiming generalizability to antibiotics rather than buying them through inconvenience mobilizes any other context. We assume that over the counter). A third example is only relatively small to moderate in- the manager’s procedures were a bona getting hospitalized as a condition of conveniences. It leaves individuals fide attempt to allocate scarce health reimbursement for medical expens- with a genuine choice to forgo a ben- care resources more appropriately, not es.20 Others are traveling to distant efit. When the alternatives are severe merely an attempt to avoid coverage locations (to see a within-network pain, true humiliations, or signifi- obligations. The figure summarizes specialist) and performing unpleasant cant health risks, the patient could the data, with each symbol represent- tasks (waking up very early to be first plausibly be said to lack real choice, ing approximately 386 patients (and in line or calling automated interac- making the rationing direct per our the physician treating each). tive customer service lines). Still an- definition. Suffering mild knee pain During this period, the man- other is being assertive (to convince while on a waiting list for a wholly ager received 38,621 requests to pay an administrator that one’s medical elective knee surgery, for which wait- for use of expensive drugs off-label, need is urgent enough to require ing is safe but prolongs discomfort, which presumably were driven by immediate callback from the physi- can be a form of rationing through physicians’ recommending such care cian). In the health care context, the inconvenience, whose ethics can be for their patients. Another unknown burden can fall on the patient or her debated. Suffering tremendously on number of patients (on the left in advocates, including the clinician or the surgery waiting list as a disincen- the figure) who could have benefit- other staff members. In some cases, tive against seeking the surgery is too ted from the off-label use of a drug this burden will be associated with burdensome to count as rationing were deterred from even applying, a financial cost—possibly direct cost through inconvenience. Drawing the presumably because the time and (paying for gas for transportation), line between moderate and severe in- effort involved were predicted to be indirect cost (paying for childcare convenience can be difficult, but the too burdensome for these patients or while the parent is standing in line), core idea is that the inconvenience for their physicians. This is already or an opportunity cost (lost wages).21 cannot be “unduly burdensome,” to a form of rationing through incon- However, that financial cost is not borrow a phrase from constitutional venience. Further research should what makes the burden constitute ra- jurisprudence around abortion law.24 document these effects. tioning through inconvenience. Finally, by our definition, ration- The data show that, upon receiv- Fourth, rationing through incon- ing through inconvenience need not ing these 38,621 requests for off-label venience is indirect in that it oper- be intended by payors or planners. It use of expensive drugs, the manager ates through patient or clinician need not even be noticed by them. accepted 90 percent (34,819, group

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Electronic copy available at: https://ssrn.com/abstract=3358604 I in in the figure) and denied only place. When understanding the man- Increasing Autonomy 10 percent (3,802, group II in the ager’s procedure as a whole, we can figure).26 Notably, even the vast ma- conservatively say that, by deterring tephan Burton and colleagues de- jority of applicants who wound up 2,172 cases of consumption, covert Sfend indirect rationing of drugs successful suffered the inconvenience rationing through inconvenience was on grounds of autonomy: “Ethically of making the application. For that numerically ten times more signifi- acceptable policies should respect the reason and because appeal remained cant than the overt direct rationing autonomy of both patients and phy- possible, this preauthorization pro- mechanism, which proscribed only sicians. Some might place a higher cess was not a pure example of direct 226 cases. value on convenience or fewer side rationing. It was arguably rationing Current distributive ethics theo- effects, while others might opt for through inconvenience. ry focuses primarily on the desired greater economy. . . . [P]hysicians There are more complete data at distributive pattern (namely, who should be free to exercise their judg- the next phase, concerning the 3,802 should have how much and on what ment about the best drugs to enhance patients who were initially denied basis) and on the desired distributive each patient’s well-being.”29 They coverage of their drug (group II in the currency (what should be distribut- hold this to be an important ethical figure). Among them, 2,172 patients ed).27 We propose a research agenda advantage of indirect rationing meth- (6 percent of the original applicants, on the morally right method of ration- ods like physician capitation, tiered group II.A) simply went away, while ing.28 As we show, rationing through copayments, and drug benefit caps 1,630 (4 percent of the original ap- inconvenience has important advan- over direct rationing methods. Since plicants, group II.B) submitted the necessary documents to appeal the Decisions on allocation between candidate recipients do initial denial decision. We cannot observe the counterfactual for the not fall to the individual candidate to decide former 2,172 patients. How many on her own. That said, we can count it as a limited would have been successful had they appealed? Nonetheless, these patients advantage of rationing through inconvenience that it can illustrate a second phase of ration- ing through inconvenience. In other preserve patient choice. words, most of the patients whose physicians initially believed that they tages over direct rationing as well rationing through inconvenience is a could benefit from an off-label use of as over indirect rationing through a form of indirect rationing, one could a drug but were denied chose to self- financial cost. It also has important argue that it has the same important ration, declining to further pursue disadvantages. advantage of respect for autonomy. this perceived medical need. We now review several consider- However, rationing social resourc- Of the 1,630 patients who went ations that can affect the merits and es, by definition, implicates the rights through additional hassle and sub- demerits of rationing through incon- of other claimants on the resources, mitted appeals, 1,404 (3.6 percent of venience as compared to other ration- claimants such as other members of the original applicants and 86 percent ing mechanisms, especially in health an insurance pool, who have an in- of appellants, group II.B.1) won their care. These considerations are clus- terest in keeping premiums low. As appeals. The 226 appellants who were tered around a result, no general strong obligation ultimately rejected (0.6 percent of the • increasing autonomy, exists to “respect the autonomy of original applicants and 14 percent of both patients and physicians.” With appellants, group II.B.2) are the only • reducing regressivity and influ- rationing, decisions on allocation be- pure cases of direct rationing. encing disparities, tween candidate recipients do not fall Overall, then, the pharmacy bene- • creating waste and conflicts of to the individual candidate to decide fits manager’s process directly rationed interest, on her own.30 For example, a patient only 226 cases. That’s a mere 0.6 per- on a transplant list lacks any auton- • increasing psychological impact cent of the applicants, all 38,621 of omy right to kick other patients off on consumption decisions, whom were inconvenienced by the it, even if not getting the transplant application procedures, and some of • reducing commodification and would profoundly set back her au- whom were also inconvenienced by related considerations, and tonomously chosen plan of life. appealing. The process used ration- • increasing public acceptability That said, we can count it as a lim- ing through inconvenience to deter while reducing transparency. ited advantage of rationing through 2,172 appeals and an unknown (but inconvenience that it can preserve probably much larger) number of patient choice. Other things being patients from applying in the first equal, it is preferable to facilitate

January-February 2018 HASTINGS CENTER REPORT 13

Electronic copy available at: https://ssrn.com/abstract=3358604 How Rationing through Inconvenience Dwarfs One Pharmacy Benefits Manager’s Direct Rationing

The data we have plotted in this figure come from J. R. Teagarden et al., “Influence of Pharmacy Benefit Practices on Off-Label Dispensing of Drugs in the United States,” Clinical Pharmacology and Therapeutics 91, no. 5 (2012): 943-45.

patient choice about, for example, those that can be possessed by anyone drug too expensive for the benefi ts it whether to undergo inconvenience else.”32 By separating individuals who generates. NICE’s cost-effectiveness and receive the benefi t—even regard- are willing to accept inconvenience to recommendations depend on broad ing social-resource priorities over procure a good or service from ones generalizations that are based on data which patients lack strong autonomy who are not, rationing through in- about the average patient with the rel- rights. convenience gathers that information evant disease. But for some patients, One instrumental advantage of and applies it to personalize rationing the likely benefi ts from the relevant choice-based mechanisms is that they policy. For example, in Dupas and drug are far greater than they are for personalize the use of resources. Pa- colleagues’ experiment, families who the average patient. Cook persuaded tients vary in their biology, circum- know that they are unlikely to use a committee that, in his case, the rele- stances, and values, with different the chlorine tablets are less likely to vant cancer drug would be cost effec- medical and welfare needs. Personal- submit to the inconvenience of pro- tive, and this decision saved his life.35 ization is the attempt to heed those curing them.33 In this way an incon- Nevertheless, such direct rationing by different needs in the allocation of venience—an “ordeal”34—may lead committee is potentially expensive, scarce resources. In contrast, without to more effi cient allocation. slow, and haphazard in a world where choice, health policy must proceed In direct rationing, collecting millions of health care decisions are on “general presumptions,” which, as information from patients and per- made every day.36 It also depends on John Stuart Mill wrote, “may be alto- sonalizing care is more challenging. information that is in the hands of gether wrong, and even if right, are as Consider the case of British cancer the patients and their physicians and likely as not to be misapplied to indi- patient David Cook, who sought is subject to familiar self-reporting bi- vidual cases.”31 Society lacks pertinent coverage for an expensive cancer drug ases, with perverse incentives to offer information about individual vari- from the British National Health Sys- misguiding information to gain ac- ability in many areas where the “or- tem, although the National Institute cess to the drug. dinary man or woman has means of for Health and Clinical Excellence The sharing of otherwise private knowledge immeasurably surpassing (NICE) had at the time deemed that information can also be demeaning.

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Electronic copy available at: https://ssrn.com/abstract=3358604 Cook described pleading for his life she suffered the disadvantage with- hours in a day, a limited attention in the face of a group of people who out such choice.39 Luck egalitar- span, and a body that can be in only are free from his condition as humili- ians argue, for example, that justice one place at a time. Accordingly, ating.37 The committee’s appropriate does not require compensation for scholars have recognized that “charg- skepticism may exacerbate the hu- a financial loss consequent to a per- ing for the product will tend to gener- miliation (“Can you prove to us that fectly avoidable gamble; it requires ate a wealthier set of customers than you feel that much pain by night?”). compensation only for losses that are requiring customers to spend time The inevitable inquisitorial method due to genetic incapacity, structural picking it up”42 and that a queue recalls Jonathan Wolff’s critique of unemployment, and the like. In the “stacks up reasonably well on a fair- conditional unemployment benefit rationing-through-inconvenience ness criterion, in that anyone can get program inspections that can shame context, if certain people choose to in the queue.”43 In this way, ration- and humiliate applicants.38 avoid a reasonable inconvenience as- ing through inconvenience is less re- In contrast, rationing through sociated with some health care, then gressive than rationing through cost inconvenience allows individual pa- their resulting poorer outcomes may sharing. tients and clinicians to utilize their nonetheless be fair at the bar of luck Indeed, one might argue that private information about the pa- egalitarianism. spending time picking up a product tient’s case—including the patient’s Overall, then, rationing through or standing in line has a worse impact medical factors, physiological factors, inconvenience has certain autonomy- on high earners than on the poor be- personal circumstances, and personal related advantages over direct forms cause, for high earners, time is worth values—to swiftly determine whether of rationing. Like cost sharing, it has more money in opportunity cost.44 access to a treatment option is worth the burden of the inconvenience for Rationing through inconvenience is less regressive than her. In this way, rationing through rationing through cost sharing. All people have inconvenience is similar to rationing through cost-sharing, where the the- twenty-four hours in a day, a limited attention span, and ory is that patients who perceive the greatest benefits of a given treatment a body that can be in only one place at a time. would rationally have the highest willingness to pay for that treatment the potential to shape consumption Psychologically, this opportunity cost and, in a free market, would bid up decisions in the directions preferred may make the rich loath to wait,45 but its price until they secured that treat- by a system rationer while preserving the objective loss of utility need not ment over others who value it less. patient and physician choices. This be greater for the rich. A given dol- This classic economic theory applies gives it an advantage (albeit a defea- lar loss is also a smaller marginal loss equally to rationing through incon- sible one) in terms of personalization of objective utility for those who have venience. Patients who perceive the of decisions and a form of luck-egali- more dollars. greatest benefits from a treatment will tarian justice. All that said, rationing through similarly have what we could call the inconvenience can remain some- greatest “willingness to suffer” the in- Reducing Regressivity and what regressive. For example, in conveniences that may come with it. Influencing Disparities the United States, the majority of Assuming that central rationers can low-paid workers do not enjoy paid set the level of inconvenience for a n the current discussion, “regressiv- medical leave. Spending many hours given treatment to make it commen- Iity” will designate the concern that in line for health care would impose surate with its cost-benefit profile, a given mode of rationing tends to onerous burdens on them. In some rationing through inconvenience has impose worse health care, health, or cases, wealthier individuals will be the potential to achieve personaliza- overall outcomes on poorer patients. better able to navigate or minimize tion as efficiently as cost sharing (and, Regressivity is, of course, a major an inconvenience. For example, if a as discussed below, without some of concern about financial cost-sharing queue forms when the doors happen cost sharing’s disadvantages). mechanisms of rationing.40 Other to open, wealthier individuals may be The greater patient choice in ra- forms of rationing, such as central- able to use private transportation to tioning through inconvenience may ized allocation and lotteries, avoid get there first.46 Wealthier individu- matter from a certain luck-egalitar- regressivity more easily. als may also afford to live nearer to ian viewpoint as well. According to The regressivity problem is smaller care centers, purchase a plan with a luck egalitarianism, when a person’s in rationing through inconvenience broader provider network,47 or even disadvantage results from her own than in cost sharing.41 Some individu- pay for concierge medicine.48 In avoidable choices, then her disad- als have great wealth, while others are the United States, wealthy patients vantage is somewhat fairer than if poor. But all people have twenty-four spend less time on organ waiting

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Electronic copy available at: https://ssrn.com/abstract=3358604 lists partly because they pay doc- problem in a 2006 U.S. law that found to be adversely affected, ration- tors who list them earlier or, in rare “intended to . . . reduce the num- ing through inconvenience can be cases, because they can indirectly buy ber of illegal immigrants fraudu- coupled with ameliorative measures. their way into multiple organ wait- lently receiving health care through For example, forms can be given in ing lists.49 Even in the more socialized Medicaid [by requiring] Medicaid multiple languages and geared to Swedish public health care system, recipients to provide more stringent low levels of literacy. Social workers the lowest quartile of disposable in- documentation of citizenship, such or specially trained experts can as- come predicts longer waiting times as appearing at government offices sist patients from adversely affected for orthopedic (27 percent longer) with original documents like a birth populations. When feasible, ration- and general surgery (34 percent), as certificate or driving license, rather ing through inconvenience policies compared to the highest quartile.50 than mailing photocopies of such should be calibrated to the realistic Presumably, when lines become very items.”55 But the mandate to docu- abilities of particular profiles of pa- long, the rich opt out of Sweden’s ment citizenship also imposed oner- tients and providers, not as one-size- public system and pay for surgeries ous paperwork burdens on those who fits-all approaches. In some instances, out of pocket. Medical tourism en- were eligible to receive coverage and a hardship waiver would be feasible ables rich Canadians to circumvent health care, driving tens of thousands and appropriate. A poor patient, or a national queues and undergo treat- of Americans off the program.56 This provider in an overburdened commu- ment abroad.51 Finally, wealthier in- requirement was overridden in 2009, nity clinic,59 should not be held to the dividuals can hire administrators to yet similar problems persist: as Patri- same standard of inconvenience as a fill burdensome forms for them. cia Illingworth and Wendy Parmet more privileged person. Yet another Rationing through inconvenience have noted, “[T]he complexity of approach to reducing the adverse can certainly give rise to disparities the Medicaid application process, impact on disadvantaged groups that are not directly income based. which can be daunting even for low- would be to maintain a plurality of Racial and ethnic disparities in wait income, English-speaking applicants optional inconveniences—stand in a times are well-documented in the . . . deters many eligible immigrants long line or fill out a long form, for United States.52 White, educated from enrolling.”57 example. Finally, it may even be pos- (and wealthy) patients have greater While it is clearly alarming when sible to compensate groups dispro- sway on triage officers; their doctors the impact of rationing through in- portionately and unfairly affected by instruct them exactly what to do to convenience is worse for disadvan- inconvenience. If all these corrective meet residential or “seniority” criteria taged populations (as, for example, measures turn out to be infeasible in for transplant eligibility and how to when filling out paperwork is harder a given context, though, and alterna- score other scarce resources that are on patients with lower literacy), ra- tive rationing methods will avoid the being directly rationed.53 In a sur- tioning through inconvenience is disparate impact, then avoiding ra- vey of Zambian HIV patients who sometimes more challenging for ad- tioning through inconvenience may were eligible for antiretrovirals, those vantaged populations. For a busy be better there. who—dangerously—were not on CEO, losing time by being forced antiretrovirals were 50 percent like- to show up in person can be harder Creating Waste and Conflicts lier than those on antiretrovirals to than for a much poorer, unemployed of Interest report that it would be very difficult person without a binding schedule. for them to get to the clinic.54 In this The 2006 U.S. law that required ationing through inconvenience instance, unintended inconvenience citizenship documentation for join- R is wasteful in a number of ways. seemed to create a barrier to service ing Medicaid turned out to harm At the most fundamental level, it utilization and therefore also a dis- Latino patients less, and in two states deliberately wastes time and effort. parity. And the populations affected to benefit them, since they had to As though that were not enough, adversely were geographically, not keep their identity documentation like cost sharing, its impositions are economically, demarcated. Ration- intact anyway.58 When the impact is typically most significant for the sick, ing through inconvenience can also unequal between populations but the who are relatively disadvantaged due be harder on patients with specific winners are socially disadvantaged, to illness. For a health system design- conditions. For patients living with some would not consider the unequal er to intentionally reduce the welfare depression, a long form or wait may impact unfair. of its intended beneficiaries and spe- require too much energy and emo- To reduce the bad disparities, cifically to make care less accessible tional wherewithal. rationing through inconvenience may seem perverse. Trying to erect barriers for some should be employed only carefully. Worse still, from a system per- patients may end up dissuading oth- Formal, periodic assessments should spective, rationing through inconve- ers from claiming their rights. Mike evaluate the impact on different nience is typically more wasteful than Mitka has pointed out this kind of populations. When a population is financial cost sharing. When patients

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Electronic copy available at: https://ssrn.com/abstract=3358604 pay money, it offsets the insurer’s ex- strength of a potential beneficiary’s Special ethical complications arise penditures, enabling either lower in- desire for a health product or service. when the inconvenience is borne by surance premiums and taxes or higher Thus, what could be called “bluff or- third parties beyond the patient and insurer profits and hence stronger deals” avoid the deadweight cost al- the payer, including health care pro- businesses and, ideally, better servic- together. For instance, the emergency fessionals and their other patients.69 es. At the very least, copays and de- room nurse reminds patients who Prior authorization requests can be a ductibles enrich their recipient, thus call in that, unlike their primary care considerable burden for physicians, transferring rather than destroying clinic, the emergency room “usually” for example—“a wasteful adminis- wealth. By contrast, most inconve- has a long wait. The nurse may read trative nightmare” that can consume niences have no “recipient.” In that the same script even when patient “about 20 hours a week per medical respect, they are pure waste. A disad- load is low and the wait short (on practice,” according to a physician vantage of all economic “ordeals” is which occasions her statement is mis- quoted in one story,70—which may the imposition of deadweight costs to leading albeit true), so as to encour- also leave physicians less time for their qualify for a transfer.”60 age a more cost-effective choice. Yet other patients or prod them to move But that doesn’t show that ration- although such bluffs are theoretically out of networks, work fewer hours, ing through inconvenience is ineffi- possible, the lack of transparency will or retire early, exacerbating physician cient overall. Ordeals can remain an frequently make them unethical or shortages. Patients, too, may move efficient rationing tool on balance.61 unsustainable. from networks that inconvenience If, for example, copays to dissuade Rationing through inconvenience them to concierge medicine, with a excessive use of magnetic resonance is wasteful in additional ways. Even potentially adverse effect on public imaging are deemed too regressive, when an inconvenience is enough delivery systems. then the commonly used rationing- through-inconvenience strategy of As a rationing strategy, cost sharing works only if forcing clinicians to fill out an extra individuals weigh costs against benefits, but in American form for MRI approval could save lots of money compared to no ra- health care, costs are often opaque to the patient tioning, and lots of lives compared to crude direct rationing of MRI access. at the time that she is making health care choices. Indeed, the deadweight cost may be trivial when a “micro-ordeal”62 or a Inconvenience is often more salient. very small “effort tax”63 can dramati- cally change behavior. For instance, a to optimize the level of disincentive These burdens can also create con- reimbursable coupon rather than the for the aggregate patient population, flicts of interests. Physicians may pre- product itself can target those likeli- it may result in “false negatives,” fer to minimize the inconvenience to est to use the product.64 Similarly, causing many patients not to get ap- themselves, their family, their office, making a generic drug the easy de- propriate care. That’s because, even and their other patients. But then, fault often suffices to prompt patients among those patients who have equal their primary interest in their im- to use it, saving large amounts over need for the care, some have poor mediate patient’s good care conflicts the branded product. An interesting eyesight, mental or cognitive dis- with their secondary interests in, for question is what level of inconve- abilities, chronic physical pain or less instance, protecting office staff and nience optimizes overall efficiency.65 wherewithal and perseverance, mak- family. These secondary interests may Besides, not every ordeal involves ing it harder to complete complicated all be legitimate yet may also consti- a complete deadweight cost. “Make- forms, and others live farther from tute conflicts of interest.71 And just work” is an inconvenience seeking the clinic or have inflexible work like conflicts that stem from managed partly to reduce applications for un- hours, making it harder to queue up care or relationships with industry, employment benefits and to strength- early in the morning. they may undermine trust in physi- en the incentives of the unemployed That said, wasteful false negatives cians. When a physician recommends to settle into workplaces.66 Yet make- arise in cost sharing as well. Obvious- against a treatment option that would work can also produce social value, ly, some people are short on money, have highly inconvenienced the phy- even if not optimally. Many bridges and cost sharing has been shown to sician, the patient cannot know and and dams have been built as make- deter even worthwhile care.67 Even might wonder whether the recom- work projects. a small financial cost can limit the mendation reflects medical consid- On a conceptual level, note that a number of people who obtain a mos- erations or the physician’s aversion to sheer credible threat of inconvenience quito net in an impoverished malaria- inconvenience. may suffice to serve the purpose of so- endemic area.68 liciting private information about the

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Electronic copy available at: https://ssrn.com/abstract=3358604 Increasing Psychological underuse and because, as discussed Moreover, for patients who know Impact on Consumption below, it can also make rational pri- that they do need that normally cost- Decisions ority setting less acceptable to the ineffective service or pill, rationing ost sharing works as a ration- public. through inconvenience forces them Cing strategy only if individuals to perform a very specific task, such weigh the costs of a procedure against Commodification and Related as standing in a certain line or taking its benefits, but in the contemporary Considerations a bus to a remote point of service.77 American web of health care systems, A bedrock principle of U.S. contract costs are often opaque to the patient ne longstanding worry about law forbids courts from forcing “spe- at the time that she is making health Ousing cost sharing for ration- cific performance” of promised per- care choices.72 When a patient checks ing is commodification: cost shar- sonal services.78 Instead, contract law into a hospital, she agrees to pay “all ing seems to some to put a price cites respect for persons and utilitar- reasonable charges,” and the hospi- on people’s bodies or health or on ian reasons for preferring that courts tals and physicians rarely inform her professional integrity. In a market order money damages to compensate about each procedure’s cost to her.73 regime, patients, their families, and for breach of the contractual promise. The bill that smites her with high co- physicians must weigh the patient’s On similar grounds, one might argue pays arrives only months afterwards, health against money in the stark- that imposing inconvenience—a spe- too late for it to dissuade her from se- est way: Is grandpa’s treatment really cific task—is worse than imposing lecting cost-ineffective services. worth paying that amount of money? cost sharing. Inconvenience is often more sa- Is providing the care that, humanly Nonetheless, for rationing lient in advance. The very idea of and professionally, I feel I should give through inconvenience, it is not clear inconvenience is that it is psycho- this patient worth my losing the dol- what moral weight, if any, to pay logically experienced, and filling out lars that exceed the capitation level? to these alleged problems. Even if paperwork, traveling across town, There may be said to be something respect for persons is in general im- or waiting in line often occur before denigrating74 or corrupting75 about portant, people are torn all the time one opts to receive treatment, rather asking oneself such questions. between wanting one thing for their than after. Information on other in- When the burden is inconve- bodies (food, rest) while having to do conveniences could be made more nience, things may seem different. another (commute, work) in order to perspicuous. Some U.S. hospitals’ Literal commodification objections obtain goods they want. Indeed, even emergency rooms already advertise are clearly moot. Health is weighed without rationing through inconve- their wait times on billboards in or- against time and comfort, not against nience, the health care system often der to attract patients to the hospital dollars. Trade-offs remain, of course, forces patients to perform highly spe- should they later need care. Similarly, but it is not clear whether they are as cific tasks as a precondition of medi- patients could be notified of the wait contentious—as allegedly denigrat- cal interventions to which they are time to see their own physician, and ing or corrupting—as the literal com- fully entitled—for example, to open they could be allowed to switch to a modification of bodies and health for a pill bottle or to undergo a lengthy trainee or nurse practitioner for an money. informed consent process. Concerns expedited visit. Rationing through inconvenience about lack of respect for persons may This modest typical advantage can, however, raise the inverse con- make sense when the inconvenience that rationing through inconvenience cern about respect for persons. Mo- is severe, degrading, and contrived. has over cost sharing comes with bilizing our aversions to standing in As the impositions decrease, the three caveats. First, financial cost is line, to listening to annoying muzak moral objection arguably dissipates, sometimes salient even prior to the on the phone, and jumping out of keeping the minor forms of rationing decision whether to accept care. Pa- bed earlier exploit our bodily vul- through inconvenience that are the tients may be told about copays to see nerability to inconvenience—or our focus of the present article unobjec- a doctor when they enroll in a plan psychological and physical need for tionably acceptable in that respect. or call for an appointment. Second, comfort. One might argue that in- inconveniences and their magnitude conveniences thereby turn us, or our Increasing Public Acceptability are not always transparent in advance, bodies, against ourselves. Addressing while Reducing Transparency either to patients or to clinicians. For more sinister situations, some con- example, a referring clinician might temporary thinkers have interpreted ven if otherwise justified, the be unaware of the parking woes near Kant’s ideal of respect for persons Edeliberate imposition of incon- the referral center. Third, any typical as making such impositions mor- venience may be outrageous to the greater salience of inconvenience as ally problematic.76 Intentional bodily public. Therefore, it may never come compared to cost-sharing is a double- pressure in investigation or punish- to pass, and if it did, it may prove edged sword because it can lead to ment is off limits in civilized societies. politically unstable. Doctors, in par-

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Electronic copy available at: https://ssrn.com/abstract=3358604 ticular, are already struggling to cut How ethically important is maxi- More study should be given to administrative chores and may fierce- mal transparency about the intention rationing through inconvenience, ly object to compounding inconve- to ration care and about the intention particularly in order to understand niences to them.79 to ration it through inconvenience? when it works best, how its variants But options for rationing health Maximally transparent rationing compare, and when it should not be care are never popular. No one loves schemes—ones with explicit, public used. Policy on inconvenience may cost sharing either, and no one loves criteria—can help prevent favoritism, seem harder to study and to system- being told flatly that something he is discrimination, and some other forms atize than policy on financial cost ex- seeking will be denied him. In fact, in of bad decision-making. They also posure, which has clear units, such as the United Kingdom, inconvenient facilitate accountability, democratic dollars; but in fact, the experience of queues are widely accepted as a fair control over rationing decisions, and, paying a copay can vary dramatically method of resource allocation. And allegedly, public trust in the system.82 from person to person, depending, even in the United States, measles Nonetheless, “rationing”—the “R” for example, on the person’s wealth vaccination exemptions that are in- word—remains hopelessly unpopular and personal proclivity to loss aver- convenient to obtain and therefore with most Americans,83 its fairness sion. And some inconveniences have reduce nonmedical exemption rates and inevitability notwithstanding.84 units as well. We can discuss the min- seem to encounter less hostile advo- This unpopularity may be thought to utes spent filling forms, for example.86 cacy than does the explicit narrowing justify some obliqueness in resource In short, both approaches merit and of exemption criteria.80 prioritization. In many areas of pub- allow nuanced study and systematic Besides, what the public protests lic life, forgoing maximal transpar- policy analysis. depends on what the public knows, ency may sometimes be the best Questions for future scholarly ex- which depends on transparency. And compromise.85 Whether this is the ploration of rationing through incon- rationing through inconvenience can case for rationing health care through venience include the following: sometimes occur by omission—that inconvenience is a complex question, is, by avoiding interventions that affected by philosophical consider- • Where is rationing through in- would reduce inconvenience as op- ations and context alike. convenience already in use, and posed to actively introducing incon- when do threats of inconvenience venience—and in that form, it is A Research Agenda actually prompt patients and cli- often easy to protect from full scruti- nicians to change consumption ny and protest. This may be what one ur analysis suggests that variants patterns in ways favorable to the health economist meant in explain- Oof rationing through inconve- health system? (Note, however, ing why informal inconveniencing nience have both distinct advantages that readily available data may is “one way to avoid the problem of and distinct disadvantages over direct exclude patients who, foresee- having to choose. And governments rationing and over cost-sharing forms ing inconvenience, forgo filing don’t choose very well. It’s politi- of indirect rationing. The main ad- paperwork.) cally unpopular.”81 For good and for vantages of rationing through incon- ill, rationing through inconvenience venience are that it maintains choice • How much disutility is actu- may escape public scrutiny because it and mobilizes information privy to ally created by each form of in- rarely requires formal legal interven- the patient and her physician better convenience—on average and for tion or high-level political approval. than direct rationing does and that, specific populations and in given All it takes for a public hospital to use compared to cost sharing, rationing situations—and can there be units rationing through inconvenience is through inconvenience is less regres- of inconvenience, such as minutes to intentionally fail to invest in added sive and arguably less commodifying. spent on a form, and of the dis- resources that would have alleviated However, rationing through incon- value of the inconvenience for the long waits for a certain service. A venience has distinct disadvantages, person being inconvenienced? public insurer can easily explain that especially around disparities, waste, processing times for insurance claims and conflicts of interest. Partial so- • For any given intervention that are long because administrators wish lutions may exist for some of these aims to ration through inconve- to ensure accuracy even if the full disadvantages. Ethical judgments nience, what are its effects on in- truth is that the insurer could expe- about other matters, such as the pub- dividual and population health, dite them by hiring more administra- lic acceptability of rationing through on health-related quality of life, tors or by abolishing the entire review inconvenience and its distinctive psy- on health worker attrition to non- process, given the rarity of refusals. chological impact on consumption medical professions, on bad dis- By contrast, any increase in copays decisions, depend on contingent po- parities in health care, on public must be approved and made public, litical circumstances and on broader trust in physicians, and on other as protection against corruption. normative considerations. important indices?

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Electronic copy available at: https://ssrn.com/abstract=3358604 718-24; C. P. Morley et al., “The Impact 12. D. Boushy and I. Dubinsky, “Prima- Once the impact of rationing of Prior Authorization Requirements on ry Care Physician and Patient Factors That through inconvenience is more fully Primary Care Physicians’ Offices: Report Result in Patients Seeking Emergency Care understood and refined, policy-mak- of Two Parallel Network Studies,” Journal in a Hospital Setting: The Patient’s Perspec- ers should compare it to alternative of the American Board of Family Medicine tive,” Journal of Emergency Medicine 17, no. rationing mechanisms. In certain 26, no. 1 (2013): 93-95; L. P. Casalino et 3 (1999): 405-12; J. E. Coster et al., “Why al., “What Does It Cost Physician Practices Do People Choose Emergency and Urgent instances, rationing through incon- to Interact with Health Insurance Plans?,” Care Services? A Rapid Review Utilizing a venience will turn out to be ethically Health Affairs 28, no. 4 (2009): w533-43. Systematic Literature Search and Narrative worse and should be avoided. In oth- 4. S. M. Erickson et al., “Putting Patients Synthesis,” Academic Emergency Medicine ers, it may turn out to be the best First by Reducing Administrative Tasks 24, no. 9 (2017): 1137-49; A. Mehrotra mechanism for the inevitable, ratio- in Health Care: A Position Paper of the et al., “Retail Clinics, Primary Care Phy- American College of Physicians,” Annals of sicians, and Emergency Departments: A nal, and fair task of rationing health Internal Medicine 166, no. 9 (2017): 659- Comparison of Patients’ Visits,” Health Af- care. 61; American Medical Association, “H- fairs 27, no. 5 (2008): 1272-82; R. Penson 160.919 Principles of the Patient-Centered et al., “Why Do Patients with Minor or Acknowledgments Medical Home,” June 9, 2014, accessed Moderate Conditions That Could Be Man- Earlier versions of this paper were January 16, 2018, https://archive.li/7dtJo. aged in Other Settings Attend the Emer- 5. P. Dupas et al., “Targeting Health gency Department?,” Emergency Medicine presented at Roskilde University’s Phi- Subsidies through a Nonprice Mechanism: Journal 29, no. 6 (2012): 487-91. losophy Department; the American A Randomized Controlled Trial in Kenya,” 13. J. Scott Ashwood et al., “Retail Clinic Society for Bioethics and the Humani- Science Magazine 353, no. 6302 (2016): Visits for Low-Acuity Conditions Increase ties 2016 annual conference; the Uni- 889-95. Utilization and Spending,” Health Affairs versity of Arizona’s Clinical Bioethics 6. X. Ma et al., “Ordeal Mechanisms 35, no. 3 (2016): 449-55. and Training in the Provision of Subsidized 14. D. Mangan, “Clinics May Not Low- Committee; Harvard Law School’s Products in Developing Countries,” un- er Health Insurance Costs,” CNBC, March Petrie Flom Center for Health Law, published manuscript, 2014, Mimeo, Stan- 7, 2016. Policy, Biotechnology, and Bioethics; ford University; but see X. Ma et al., “Effect 15. C. Constable, N. R. Blank, and A. and Harvard’s Edmond. J. Safra Center of Providing Free Glasses on Children’s L. Caplan, “Rising Rates of Vaccine Exemp- for Ethics. We thank the participants Educational Outcomes in China: Cluster tions: Problems with Current Policy and Randomized Controlled Trial,” BMJ 349 More Promising Remedies,” Vaccine 32, for detailed comments. (2014): g5740. no. 16 (2014): 1793-97; S. B. Omer, “How We also wish to thank Maryanne 7. E. L. Bogdan-Lovis and Margaret to Handle the Vaccine Skeptics,” New York Chege, Michael Gill, Kasper Lippert- Holmes-Rovner, “Prudent Evidence-Fet- Times, February 6, 2015; L. O. Gostin, Rasmussen, Holly Fernandez-Lynch, tered Shared Decision Making,” Journal “Law, Ethics, and Public Health in the Vac- Margaret McConnell, Ole Norheim, of Evaluation in Clinical Practice 16, no. 2 cination Debates: Politics of the Measles (2010): 376-81. Outbreak,” Journal of the American Medical Thomas Søbirk Petersen, Leah Price, 8. D. King et al., “Approaches Based on Association 313, no. 11 (2015): 1099-1100. Jesper Ryberg, Richard Zeckhauser, Behavioral Economics Could Help Nudge 16. Ibid. and audiences at the American Society Patients and Providers toward Lower 17. M. Hall, Making Medical Spending for Bioethics and the Humanities 2016 Health Spending Growth,” Health Affairs Decisions (New York: Oxford University annual conference; the Clinical Bio- 32, no. 4 (2013): 661-68; M. S. Patel, K. Press, 1997); D. W. Brock, “Health Care G. Volpp, D. A. Asch, “Nudge Units to Resource Prioritization and Rationing: ethics Committee at University Medi- Improve the Delivery of Health Care,” Why Is It So Difficult?,” Social Research cal Center, Tucson, Arizona; Harvard New England Journal of Medicine 378, no. 74, no. 1 (2007): 125-48; R. D. Truog, Law School’s Petrie-Flom Center; and 3 (2018): 214-16. “Screening Mammography and the ‘R’ the Edward J. Safra 30th Anniversary 9. C. R. Sunstein, The Ethics of Influence: Word,” New England Journal of Medicine conference at Harvard University. Nir Government in the Age of Behavioral Science 361, no. 26 (2009): 2501-03. (New York: Cambridge University Press, 18. C. R. Sunstein and R. H. Thaler, Eyal’s work was partly funded by the 2016). Nudge: Improving Decisions about Health, Rector’s award from Roskilde Univer- 10. K. Davis et al., “Mirror, Mirror on Wealth, and Happiness, 1st ed. (New Haven, sity, Denmark. the Wall: How the Performance of the U.S. CT: Yale University Press, 2008). Health Care System Compares Internation- 19. T. A. Smith, B.-H. Lin, and J.-Y. Notes ally,” The Commonwealth Fund, 2014, at Lee, “Taxing Caloric Sweetened Bever- 1. G. W. Grumet, “Health Care Ration- http://www.commonwealthfund.org; A. M. ages: Potential Effects on Beverage Con- ing through Inconvenience: The Third Par- Garber and J. Skinner, “Is American Health sumption, Calorie Intake, and Obesity,” in ty’s Secret Weapon,” New England Journal Care Uniquely Inefficient?,”Journal of Eco- USDA Economic Research Report, July 2010, of Medicine 321, no. 9 (1989): 607-11. nomic Perspectives 22, no. 4 (2008): 27-50. https://www.ers.usda.gov/webdocs/publica- 2. D. W. Light, “Life, Death, and the In- 11. National Public Radio, Robert Wood tions/44732/8310_err100_reportsumma- surance Companies,” New England Journal Johnson Foundation, and Harvard T. H. ry_1_.pdf?v=41056; T. Andreyeva, M. W. of Medicine 330, no. 7 (1994): 498-500. Chan School of Public Health, “Patients’ Long, and K. D. Brownell, “The Impact of 3. Grumet, “Health Care Rationing Perspectives on Health Care in the United Food Prices on Consumption: A Systematic through Inconvenience”; J. L. Raper et al., States: A Look at Seven States & the Na- Review of Research on the Price Elasticity “Uncompensated Medical Provider Costs tion,” National Public Radio, February of Demand for Food,” American Journal of Associated with Prior Authorization for Pre- 26, 2016, at https://www.npr.org/assets/ Public Health 100, no. 2 (2010): 216-22. scription Medications in an HIV Clinic,” img/2016/02/26/PatientPerspectives.pdf. 20. A. L. Nichols and R. J. Zeckhauser, Clinical Infectious Diseases 51, no. 6 (2010): “Targeting Transfers through Restrictions

20 HASTINGS CENTER REPORT January-February 2018

Electronic copy available at: https://ssrn.com/abstract=3358604 on Recipients,” American Economic Review Economic Security,” Yale Journal of Health (2010): 1467-1567. Undergoing an opera- 72, no. 2 (1982): 372-77. Policy, Law, and Ethics 14, no. 2 (2014): tion abroad is also a hassle and potentially 21. G. Tinghög et al., “Horizontal In- 239-95. a form of rationing through inconvenience, equality in Rationing by Waiting Lists,” 41. Nichols and Zeckhauser, “Targeting however. International Journal of Health Services 44, Transfers through Restrictions on Recipi- 52. Ray et al., “Disparities in Time Spent no. 1 (2014): 169-84; Kristin N. Ray et al., ents”; B. A. Olken, “Hassles versus Prices,” Seeking Medical Care in the United States”; “Opportunity Costs of Ambulatory Medi- Science 353, no. 6302 (2016): 864-65. C. Y. Park, M. A. Lee, and A. J. Epstein, cal Care in the United States,” American 42. P. Dupas et al., “Micro-ordeals, Tar- “Variation in Emergency Department Wait Journal of Managed Care 21, no. 8 (2015): geting, and Habit Formation,” working pa- Times for Children by Race/Ethnicity and 567-74. per, September 12, 2103, accessed January Payment Source,” Health Services Research 22. S. L. Burton et al., “The Ethics of 16, 2018, https://economics.columbian. 44, no. 6 (2009): 2022-39; D. S. Carr, Y. Pharmaceutical Benefit Management,” gwu.edu/files/downloads/Trade%20-%20 Ibuka, and L. B. Russell, “How Much Time Health Affairs 20, no. 5 (2001): 150-63. Micro-ordeals%2009.16.13.pdf. Do Americans Spend Seeking Health Care? 23. Ibid. 43. D. Baron, “Zambia: Rationing Racial and Ethnic Differences in Patient Ex- 24. L. Greenhouse and R. Siegel, “Casey Health by Queue,” Rationing Health— periences,” in The Impact of Demographics and the Clinic Closings: When ‘Protecting Who Lives? Who Decides?, PRI’s The World, on Health and Health Care: Race, Ethnicity Health’ Obstructs Choice,” Yale Law Jour- Public Radio International, December and Other Social Factors, ed. J. J. Kronenfeld nal 125, no. 5 (2015): 1428-80. 16, 2010, at https://www.pri.org/series/ (Bingley, U.K.: Emerald Group Publishing, 25. J. R. Teagarden et al., “Influence of rationing-health. 2010), 71-98. Pharmacy Benefit Practices on Off-Label 44. D. Carpenter, “The Real Standing 53. Institute of Medicine, Unequal Dispensing of Drugs in the United States,” Problem in the Marriage Cases,” The Volokh Treatment: Confronting Racial and Ethnic Clinical Pharmacology and Therapeutics 91, Conspiracy (blog), March 30, 2013, http:// Disparities in Health Care (Washington, no. 5 (2012): 943-45. www.volokh.com/2013/03/30/misbehav- D.C.: National Academies Press, 2003); 26. Ibid. ior-at-the-court/; V. Alatas et al., “Self-Tar- D. J. Lederer et al., “Racial and Ethnic 27. G. A. Cohen, “On the Currency of geting: Evidence from a Field Experiment Disparities in Survival in Lung Transplant Egalitarian Justice,” Ethics 99, no. 4 (1989): in Indonesia,” Journal of Political Economy Candidates with Idiopathic Pulmonary Fi- 906-44. 124, no. 2 (2016): 371-427. brosis,” American Journal of Transplantation 28. See Hall, Making Medical Spending 45. I. O. Kuye, R. G. Frank, and J. M. 6, no. 2 (2006): 398-403; G. Thabut et al., Decisions. McWilliams, “Cognition and Take-up of “Geographic Disparities in Access to Lung 29. Burton et al., “The Ethics of Phar- Subsidized Drug Benefits by Medicare Ben- Transplantation before and after Imple- maceutical Benefit Management,” 152-53. eficiaries,” JAMA Internal Medicine 173, mentation of the Lung Allocation Score,” 30. See Gostin, “Law, Ethics, and Public no. 12 (2013): 1100-07. American Journal of Transplantation 12, no. Health in the Vaccination Debates.” 46. Alatas et al., “Self-Targeting.” 11 (2012): 3085-93; Ray et al., “Disparities 31. J. S. Mill, On Liberty, ed. Curry V. 47. K. N. Ray et al., “Disparities in Time in Time Spent Seeking Medical Care in the Shields (New York: Liberal Arts Press, 2017 Spent Seeking Medical Care in the United United States.” [1869]), 93. States,” JAMA Internal Medicine 175, no. 54. M. P. Fox et al., “Barriers to Ini- 32. Ibid., 62. 12 (2015): 1983-86; Agency for Healthcare tiation of Antiretroviral Treatment in 33. Dupas et al., “Targeting Health Sub- Research and Quality, “Timeliness,” in Na- Rural and Urban Areas of Zambia: A sidies through a Nonprice Mechanism.” tional Healthcare Disparities Report (Rock- Cross-Sectional Study of Cost, Stigma, 34. R. G. Frank and R. J. Zeckhauser, ville, MD: AHRQ, 2013), chapter 5. and Perceptions about ART,” Journal of “Custom-Made versus Ready-to-Wear 48. M. Stillman, “Concierge Medicine: the International AIDS Society 13 (2010): Treatments: Behavioral Propensities in Phy- A ‘Regular’ Physician’s Perspective,” An- 10.1186/1758-2652-13-8. sicians’ Choices,” Journal of Health Econom- nals of Internal Medicine 152, no. 6 (2010): 55. M. Mitka, “Proving Citizenship Dif- ics 26 (2007): 1101-27. 391-92. ficult,” Journal of the American Medical As- 35. P. Cox, “United Kingdom: Ration- 49. B. S. Quon et al., “Disparities in Ac- sociation 298, no. 10 (2007): 1153; D. C. ing Health by Cost,” Rationing Health— cess to Lung Transplantation for Patients Ross, “Medicaid Documentation Require- Who Lives? Who Decides?, PRI’s The World, with Cystic Fibrosis by Socioeconomic ment Disproportionately Harms Non- Public Radio International, December Status,” American Journal of Respiratory and Hispanics, New State Data Show: Rule 15, 2011, at https://www.pri.org/series/ Critical Care Medicine 186, no. 10 (2012): Mostly Hurts U.S. Citizen Children, Not rationing-health. 1008-13; J. L. Hook and D. J. Lederer, Undocumented Immigrants,” Center on 36. This is perhaps demonstrated by “Socioeconomic Barriers to Lung Trans- Budget and Policy Priorities, July 10, 2007, the United States’ backlog of hundreds of plantation: Balancing Access and Equity,” accessed January 16 2018, at https://www. thousands of Medicare appeals. See M. J. American Journal of Respiratory and Critical cbpp.org/research/medicaid-documen- B. Lawrence, “Procedural Triage,” Fordham Care Medicine 186, no. 10 (2012): 937-39; tation-requirement-disproportionately- Law Review 84 (2015): 79-130. P. Ubel, “Your New Liver Is Only a Lear- harms-non-hispanics-new-state-data. 37. Cox, “United Kingdom: Rationing jet Away: Part 1 of 3,” Forbes, June 24, 56. Mitka, “Proving Citizenship Health by Cost.” 2015, http://www.forbes.com/sites/peteru- Difficult.” 38. J. Wolff, “Fairness, Respect and the bel/2015/06/24/your-new-liver-is-only-a- 57. P. Illingworth and W. Parmet, The Egalitarian Ethos,” Philosophy & Public Af- learjet-away-first-of-three-parts/. Health of Newcomers: Immigration, Health fairs 27 (1998): 97-122. 50. Tinghög et al., “Horizontal Inequal- Policy, and the Case for Global Solidarity 39. Cohen, “On the Currency of Egali- ity in Rationing by Waiting Lists,” 177. (New York: NYU Press, 2017). tarian Justice”; L. S. Temkin, “Egalitarian- 51. M. Z. Bookman and K. R. Bookman, 58. Ross, “Medicaid Documentation Re- ism Defended,” Ethics 113, no. 4 (2003): Medical Tourism in Developing Countries quirement Disproportionately Harms Non- 764-82. (London: Palgrave Macmillan, 2007); I. G. Hispanics, New State Data Show.” 40. C. T. Robertson, “Scaling Cost- Cohen, “Protecting Patients with Passports: 59. Ray et al., “Disparities in Time Spent Sharing to Wages: How Employers Can Re- Medical Tourism and the Patient-Protective Seeking Medical Care in the United States.” duce Health Spending and Provide Greater Argument,” Iowa Law Review 95, no. 5

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Electronic copy available at: https://ssrn.com/abstract=3358604 60. Nichols and Zeckhauser, “Target- Journal of Medicine 329, no. 8 (1993): 80. Omer, “How to Handle the Vaccine ing Transfers through Restrictions on 573-76. Skeptics”; Gostin, “Law, Ethics, and Public Recipients.” 72. U. E. Reinhardt, “The Pricing of Health in the Vaccination Debates.” 61. Ibid.; Olken, “Hassles versus Prices.” U.S. Hospital Services: Chaos behind a Veil 81. Baron, “Zambia.” 62. Dupas et al., “Micro-ordeals, Target- of Secrecy,” Health Affairs 25, no. 1 (2006): 82. N. Daniels and J. E. Sabin, Setting ing, and Habit Formation.” 57-69. Limits Fairly: Learning to Share Resources for 63. Sunstein, The Ethics of Influence. 73. P. A. Ubel, P. Abernethy, and S. Health, 2nd ed. (Oxford, New York: Oxford 64. Dupas et al., “Targeting Health Sub- Yousuf Zafar, “Full Disclosure—Out-Of- University Press, 2008). sidies through a Nonprice Mechanism.” Pocket Costs as Side Effects,” New England 83. Truog, “Screening Mammography 65. Ma et al., “Ordeal Mechanisms and Journal of Medicine 369, no. 16 (2013): and the ‘R’ Word.” Information in the Provision of Subsidized 1484-86. 84. Brock, “Health Care Resource Priori- Health Goods in Developing Countries”; 74. M. J. Radin, “Property and Person- tization and Rationing.” Alatas et al., “Self-Targeting.” hood,” Stanford Law Review 34, no. 957 85. O. O’Neill, “Trust and Transpar- 66. Nichols and Zeckhauser, “Targeting (1983): 971-90. ency,” lecture 4 in Reith Lectures 2002, “A Transfers through Restrictions on Recipi- 75. M. Sandel, What Money Can’t Buy: Question of Trust,” BBC Radio 4, at http:// ents”; Olken, “Hassles versus Prices.” The Moral Limits of Markets (New York: www.bbc.co.uk/radio4/reith2002/lectures. 67. Robertson, “Scaling Cost-Sharing to Farrar, Straus and Giroux, 2012). shtml; L. Lessig, “Against Transparency: Wages.” 76. D. Sussman, “What’s Wrong with The Perils of Openness in Government,” 68. P. Dupas, “What Matters (and What Torture?,” Philosophy & Public Affairs 33, The New Republic, October 9, 2009; C. T. Does Not) in Households’ Decision to In- no. 1 (2005): 1-33. Robertson and Aaron S. Kesselheim, eds., vest in Malaria Prevention?,” American Eco- 77. Ma et al., “Ordeal Mechanisms and Blinding as a Solution to Bias: Strengthen- nomic Review 99, no. 2 (2009): 224-30. Information in the Provision of Subsidized ing Biomedical Science, Forensic Science, and 69. Baron, “Zambia.” Health Goods in Developing Countries.” Law (London: Academic Press, 2016). 70. J. Pfeffer, “Why Health Insurance 78. R. E. Barnett, “Contract Remedies 86. J. S. Lubbers, “Paperwork Redux: Companies Are Doomed,” Fortune, Octo- and Inalienable Rights,” Social Philosophy The (Stronger) Paperwork Reduction Act of ber 20, 2014. and Policy 4, no. 1 (1986): 179-202. 1995,” Administrative Law Review 49, no. 1 71. D. F. Thompson, “Understanding Fi- 79. Erickson et al., “Putting Patients (1997): 111-21. nancial Conflicts of Interest,”New England First by Reducing Administrative Tasks in Health Care.”

Another Voice Rationing Care through Collaboration and Shared Values by james e. sabin

lthough “rationing” continues to be a dirty word nience” as a justifiable allocational technique. And they for the public in health policy discourse, Nir Eyal wisely call for research on the effectiveness and fairness of and colleagues handle the concept exactly right this approach and other methods of rationing. A 1 in their article in this issue of the Hastings Center Report. I fully agree with their approach to rationing and with They correctly characterize rationing as an ethical require- their argument that the process they provocatively label ment, not a moral abomination. They identify the key “rationing through inconvenience” should not be rejected health policy question as how rationing can best be done, out of hand. But I believe they have underestimated two not whether it should be done at all. They make a cogent ways in which the practical impacts of rationing through defense of what they call “rationing through inconve- inconvenience limit its potential usefulness: the asymme- try of its effect on patients and physicians and the way in James E. Sabin, “Rationing Care through Collaboration and Shared Val- which it reduces the capacity of health systems to learn ues,” Hastings Center Report 48, no. 1 (2018): 22-24. DOI: 10.1002/ from experience. hast.807

22 HASTINGS CENTER REPORT January-February 2018

Electronic copy available at: https://ssrn.com/abstract=3358604