rationing: don't give up

2
T here can be no health reform without health care rationing. There can be no fair health re- form without health care rationing for all. This is my first large point. Second, philosophers can have, and ought to have, a substantial role in achiev- ing health reform, but it will not be as academic scholars or as political shills or as masters of the media sound bite. Rather, it will be as facilitators (honest brokers) of a certain sort of public conversation. The problem of health care rationing will become more painfully acute during this decade, especially because we are likely to see the rapid proliferation of costly “last chance” therapies. I have in mind three examples that have achieved some media prominence in the past year. They are the totally implantable arti- ficial heart (TIAH), the left ventricular assist device (LVAD), and Herceptin, a drug now available to women with metastasized breast cancer, specifically, the 30 percent of such women with HER-2 receptors that have the unfortunate effect of speeding up the metastatic process. For our purposes, the defining fea- tures of these therapies are that they represent the last chance at prolonging life for individuals who other- wise face death in the near future; they are very ex- pensive at the individual level and in the aggregate; and they typically yield what from some social point of view would be judged marginal benefits relative to costs. All the same, they are interventions that pa- tients are very likely to want. Is a just and caring soci- ety, or employer, or managed care plan morally oblig- ated to provide them? To concretize the issue a bit, there is a potential annual need of 350,000 TIAHs at an aggregate cost of $52 billion. If this number seems high, the reader should know that we currently perform about 650,000 bypass surgeries in the United States each year and another 600,000 coronary angioplasties. Projections are that the TIAH will provide an average of five extra years of life expectancy, although the range around that average could be quite large. If we provide the device to anyone at social expense (through Medicare, for example), would justice re- quire that we provide it to someone whose predicted life expectancy with the device might be only one year? This is the “ragged edge” problem that Daniel Callahan has insightfully identified. There will be a potential need of 200,000 LVADs each year for patients with end-stage congestive heart failure, although predicted survival on average for that device might be only one to two years. Herceptin therapy might be needed by 12,000 women each year at a likely cost of $70,000 per case. As reported in the New England Journal of Medicine (15 March 2001), HASTINGS CENTER REPORT 35 March-April 2002 by L EONARD M. F LECK Leonard M. Fleck, “Health Reform Requires Health Care Rationing,” Hastings Center Report 32, no. 2 (2002): 35-36. It’s not only necessary, but possible, if the public can be educated.

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Page 1: Rationing: Don't Give up

There can be no health reform without healthcare rationing. There can be no fair health re-form without health care rationing for all.

This is my first large point. Second, philosophers canhave, and ought to have, a substantial role in achiev-ing health reform, but it will not be as academicscholars or as political shills or as masters of the mediasound bite. Rather, it will be as facilitators (honestbrokers) of a certain sort of public conversation.

The problem of health care rationing will becomemore painfully acute during this decade, especiallybecause we are likely to see the rapid proliferation ofcostly “last chance” therapies. I have in mind threeexamples that have achieved some media prominencein the past year. They are the totally implantable arti-ficial heart (TIAH), the left ventricular assist device(LVAD), and Herceptin, a drug now available towomen with metastasized breast cancer, specifically,the 30 percent of such women with HER-2 receptorsthat have the unfortunate effect of speeding up themetastatic process. For our purposes, the defining fea-tures of these therapies are that they represent the lastchance at prolonging life for individuals who other-wise face death in the near future; they are very ex-pensive at the individual level and in the aggregate;

and they typically yield what from some social pointof view would be judged marginal benefits relative tocosts. All the same, they are interventions that pa-tients are very likely to want. Is a just and caring soci-ety, or employer, or managed care plan morally oblig-ated to provide them?

To concretize the issue a bit, there is a potentialannual need of 350,000 TIAHs at an aggregate costof $52 billion. If this number seems high, the readershould know that we currently perform about650,000 bypass surgeries in the United States eachyear and another 600,000 coronary angioplasties.Projections are that the TIAH will provide an averageof five extra years of life expectancy, although therange around that average could be quite large. If weprovide the device to anyone at social expense(through Medicare, for example), would justice re-quire that we provide it to someone whose predictedlife expectancy with the device might be only oneyear? This is the “ragged edge” problem that DanielCallahan has insightfully identified.

There will be a potential need of 200,000 LVADseach year for patients with end-stage congestive heartfailure, although predicted survival on average forthat device might be only one to two years. Herceptintherapy might be needed by 12,000 women each yearat a likely cost of $70,000 per case. As reported in theNew England Journal of Medicine (15 March 2001),

H A S T I N G S C E N T E R R E P O R T 35March-April 2002

b y L E O N A R D M . F L E C K

Leonard M. Fleck, “Health Reform Requires Health Care Rationing,”Hastings Center Report 32, no. 2 (2002): 35-36.

It’s not only necessary, but possible, if the public can be educated.

Page 2: Rationing: Don't Give up

the average gain in life expectancy forthis therapy is five months, with somewomen gaining significantly morethan that. This translates to a cost perlife-year saved of about $160,000. Butthere is nothing else that can be of-fered these women, who are doublyunfortunate because they have both aterminal illness and a genetic predis-position to faster progression of thedisease. Is a just and caring societymorally obligated to provide themwith access to this therapy at social ex-pense?

We can imagine “compassionate”legislative mandates that would re-quire Medicare and private insurancecompanies to cover these “lastchance” therapies. But would that bea good thing to do? Should we ap-

plaud such efforts as another incre-mental step on the road to health re-form?

My response to both questionswould be negative, mainly for tworeasons. First, these are the “early” lastchance therapies. There will be manymore, and there will be no morally orrationally obvious place to draw aline. Second, these therapies will dra-matically increase health costs for thealready insured, thereby making it allthe more unlikely that we will havethe political and economic resourcesto address the health needs of theuninsured, which is where the healthreform effort really needs to begin.

What should be the role of thephilosopher in addressing the issues ofhealth reform and health care ra-tioning? There are three critical roles.One is to educate the public, especial-ly community and professional lead-ers, about the urgency and impor-tance of these questions, and to ex-plain that they are moral issues requir-ing their engagement. They are not dis-

cussions best shunted to experts ofone sort or another. It must be em-phasized that this is not a “pure”philosophic role; philosophers, to becredible, must be willing to educatethemselves about the relevant empiri-cal and policy literature so that themoral issues are realistically contextu-alized.

Second, philosophers must be ableto effectively motivate the public toengage in rational democratic deliber-ation about these issues over a sus-tained period of time. I have found anessay by Allen Buchanan to be a near-ly perfect example of the sort of argu-ment that is needed to motivate thepublic. [See “Managed Care: Ra-tioning Without Justice, But Not Un-justly,” Journal of Health Politics, Poli-

cy, and Law 23 (1998).] He calls at-tention to the unceasing cries of un-just treatment by members of man-aged care plans who have had one oranother rationing decision imposedupon them. But he points out thatthere is no shared conception of jus-tice for determining what health careresources a person has a just claim to;their complaints are just rhetoricalfulminations. If they are unhappywith that state of affairs, then theyneed to engage in the public delibera-tions that can create and legitimate ashared conception of health care jus-tice. For such legitimation to occur,the safe and indifferent middle classensconced in managed care plans willhave to address the problem of theuninsured; their conception of healthcare justice cannot (logically) be theirprivate creation.

Third, philosophers ought to serveas facilitators of these rational democ-ratic deliberations about health re-form and health care rationing. Thatmeans philosophers cannot pose as

prophets or experts. Rather, they needto facilitate these conversations in theDeweyan problemsolving mode ofhonest public inquiry, as opposed tolecturing from some point of view.

The basic message that framesthese discussions would be this: Wecannot escape the need to make theserationing decisions, especially the verypainful decisions associated with lastchance therapies. Someday, virtuallyall of us will likely be affected by thisproblem. We can make these ra-tioning decisions collectively in waysthat we judge to be “just enough” and“caring enough,” given that there areno perfectly just options available tous. Or we can allow bureaucrats andadministrators and employers andstockholders to make these decisions

for us on whatever grounds theychoose, moral or nonmoral. There isnothing wise or virtuous in thehealthy segregating themselves fromthe ill.

There are many reasonable andjust rationing choices that we mightmake with respect to TIAHs andLVADs and therapy for metastasizedbreast cancer. But we must in factmake those decisions, and make themon rationally explicit grounds, if wewant to avoid arbitrary and discrimi-natory access and limitation decisions.And we must make those decisions inthe context of a socially endorsed uni-versal package of health benefits.

There are many ways in whichthese public deliberations might besubverted or perverted. The criticalrole of the philosopher is to use herskills to protect them from subversivesocial currents and to help the conver-sation move toward a mutually re-spectful overlapping consensus.Socrates, Dewey, and Rawls would allbe proud.

36 H A S T I N G S C E N T E R R E P O R T March-April 2002

We cannot escape the need to make rationing decisions, especially the very painful decisions associated with

last chance therapies. We can make these rationing decisions collectively in ways that we judge to be “just enough”

and “caring enough,” given that there are no perfectly just options available. Or we can allow bureaucrats and

administrators and employers and stockholders to make these decisions for us.