Engelhardt Bioethics

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652 p&AT 4: J{.J$?!e E ,,AhaP !-*g&!-?}'{ fi&&S Daniels, N. (rqq6). Reflective equilibrium and justice as political. In Daniels, /asfl ce and lustifcatiort ' Cambridge: Cambridge University Press, pp' 144-75' Danieis, N. (zooo). With Allen Buchanan, Dan W' Brock' and Daniel Wikl er. From Chance to Choice: Genetics and Justice. Cambtidge: Cambridge University Press' Emanuel, E. (tssl). The Ends of Human Lfe: Medical Ethics in a Liberal Polity. Cambridge, MA: Harvard University Press. Engelhardt, Ir.,H.T. (tglD. Disease of masturbation: Values and the concept of disea se. Bulletin of the History of Medicine 48 (z), zz+-q8. Engelhardt, Jr., H.T. (rqqr). Bioethics and Secular Humanism: The Search for a Common Morallfl'' London: SCM Press. Engelhardt, Jr., H.T (rqqq). Freedom and moral diversity: the moral failures of health care in the welfare state ln l' Arras and B. Steinbock (eds.), Ethical Issues in Modern Medicine,5th ed. Mountain View, CA: Mayfield, pp' 642-51. Reprinted from (rqgz). Social Philosophy and Policy 14 (z), r8o-q6. Gutmann, A. (rgs:). The challenge of multiculturalisr:: :-' political ethics. Philosophy and Public Afairs 22 (l - 17 t -206. Gutmann, A. and Thompson, D. (rqq6). Democracy 'i""; Disagreement. Cambridge, MA: Harvard Universir" :-"l Hurowitz, I. (rqs:). Toward a social poiicy for health -\:'' England Journal of Medicine 329 (z ), r3o-33' Maclachian, M. (rssz). Culture and Health Care Nerg 1-:;l* john Wiley. Rawls ). (rqzl). A Theory of lustice. Cambridge, MA: H'=" u-i University Press. Rawls, J. 6qg6). Political Liberalism. New York Colum::: University Press. Rawls, I. (rqqq). The idea ofpublic reason revisited ln Iohn Rawls: Collected Papers. Cambridge' MA: Han'-: University Press, PP. 57 3-615, Sedgwick, P. (rgzz)."Iliness-Mental and Otherwisel' H;-':' r Center Studies 3 (r), r9-4o. Taylor, C. (rqg:). The Politics ofRecognition' In A Guc:-;'r (ed.), Mutticulturalism and the Politics of Recognitit": Princeton, NJ: Princeton University Press' Rights to Health Care, Social Justice, and Fairness in Health Care Allocations: Frustrations in the Face of Finitude H. TRISTRAM ENGELHARDT' JR. Engelhardt asserts that "A basic human secular moral right to health care does not ex- ist-not even to a'decent minimum of health care."' He distinguishes between losses that people suffer because of bad fortune and those due to unfairness.The former do not establish a duty of aid to the unfortunate (there is no moral riSht to such aid), but the latter may constitute claims on others. Out of compassion or benevolence, society may freely consent to help those in need, but there is no forced obligation to do so. The imposition of a single-tier, all-encompassing health care system is morally unjustifiable' It is a co- ercive act oftotalitarian ideological zeal, which fails to recognize the diversity of moral visions that frame interests in health care, the secular moral limits of state authoriry and the authority of individuals over themselves and their own property' It is an act of secular immoralitY. A basic human secular moral right to health care does not exist-not even to a'Aecent minimum of health care'l Such rights must be created' The diliculty with supposed right to health *:" as well as with many claims regarding jusLice or :'- -- ness in access to health care, should be appare:-: Since the secular moral authority for common acLi:' is derived from permission or consent, it is diffi;'-: (indeed, for a large-scale society, materially impos'-- ble) to gain moral legitimacy for the thoroughgo-::i imposition on health care of one among the ma.' views ofbeneficence and justice. There are, after '' as many accounts of beneficence' justice, and ia--- ness as there are major religions.

Transcript of Engelhardt Bioethics

Page 1: Engelhardt Bioethics

652 p&AT 4: J{.J$?!e E ,,AhaP !-*g&!-?}'{ fi&&S

Daniels, N. (rqq6). Reflective equilibrium and justice as

political. In Daniels, /asfl ce and lustifcatiort ' Cambridge:

Cambridge University Press, pp' 144-75'Danieis, N. (zooo). With Allen Buchanan, Dan W' Brock'

and Daniel Wikl er. From Chance to Choice: Genetics and

Justice. Cambtidge: Cambridge University Press'

Emanuel, E. (tssl). The Ends of Human Lfe: Medical Ethics

in a Liberal Polity. Cambridge, MA: Harvard UniversityPress.

Engelhardt, Ir.,H.T. (tglD. Disease of masturbation: Values

and the concept of disea se. Bulletin of the History ofMedicine 48 (z), zz+-q8.

Engelhardt, Jr., H.T. (rqqr). Bioethics and Secular Humanism:

The Search for a Common Morallfl'' London: SCM

Press.Engelhardt, Jr., H.T (rqqq). Freedom and moral diversity:

the moral failures of health care in the welfare state ln l'Arras and B. Steinbock (eds.), Ethical Issues in Modern

Medicine,5th ed. Mountain View, CA: Mayfield, pp'

642-51. Reprinted from (rqgz). Social Philosophy and

Policy 14 (z), r8o-q6.

Gutmann, A. (rgs:). The challenge of multiculturalisr:: :-'

political ethics. Philosophy and Public Afairs 22 (l -

17 t -206.Gutmann, A. and Thompson, D. (rqq6). Democracy 'i"";

Disagreement. Cambridge, MA: Harvard Universir" :-"lHurowitz, I. (rqs:). Toward a social poiicy for health -\:''

England Journal of Medicine 329 (z ), r3o-33'Maclachian, M. (rssz). Culture and Health Care Nerg 1-:;l*

john Wiley.Rawls ). (rqzl). A Theory of lustice. Cambridge, MA: H'=" u-i

University Press.

Rawls, J. 6qg6). Political Liberalism. New York Colum:::University Press.

Rawls, I. (rqqq). The idea ofpublic reason revisited lnIohn Rawls: Collected Papers. Cambridge' MA: Han'-:University Press, PP. 57 3-615,

Sedgwick, P. (rgzz)."Iliness-Mental and Otherwisel' H;-':' rCenter Studies 3 (r), r9-4o.

Taylor, C. (rqg:). The Politics ofRecognition' In A Guc:-;'r(ed.), Mutticulturalism and the Politics of Recognitit":Princeton, NJ: Princeton University Press'

Rights to Health Care, Social Justice, and Fairness inHealth Care Allocations: Frustrations in the Face ofFinitudeH. TRISTRAM ENGELHARDT' JR.

Engelhardt asserts that "A basic human secular moral right to health care does not ex-

ist-not even to a'decent minimum of health care."' He distinguishes between losses

that people suffer because of bad fortune and those due to unfairness.The former do

not establish a duty of aid to the unfortunate (there is no moral riSht to such aid), but

the latter may constitute claims on others. Out of compassion or benevolence, society

may freely consent to help those in need, but there is no forced obligation to do so.

The imposition of a single-tier, all-encompassinghealth care system is morally unjustifiable' It is a co-

ercive act oftotalitarian ideological zeal, which failsto recognize the diversity of moral visions that frameinterests in health care, the secular moral limits ofstate authoriry and the authority of individuals overthemselves and their own property' It is an act ofsecular immoralitY.

A basic human secular moral right to health care

does not exist-not even to a'Aecent minimum ofhealth care'l Such rights must be created'

The diliculty with supposed right to health *:"as well as with many claims regarding jusLice or :'- --

ness in access to health care, should be appare:-:

Since the secular moral authority for common acLi:'is derived from permission or consent, it is diffi;'-:(indeed, for a large-scale society, materially impos'--ble) to gain moral legitimacy for the thoroughgo-::iimposition on health care of one among the ma.'views ofbeneficence and justice. There are, after ''as many accounts of beneficence' justice, and ia---

ness as there are major religions.

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654 Fp'.r2ry 4: jU%Vlt* &'r4* *iF:;aLTU* *ga*,*"

care may be provided (r) while containing costs (2)without setting a price on saving lives and prevent-ing suffering when using communal funds and atthe same time (3) ignoring the morally unavoidableinequalities due to private resources and humanfreedom. This false consciousness shaped the decep-tions central to the Clinton health care proposai, asit rvas introduced in 1994. It was advanced to sup-port a health care system purportedly able to pro-vide all with (1) the best of care and (z) equal care,while achieving (:) cost containment, and still (4)allowing those who wish the liberty to purchasefee-for-service health care.' While not acknowledg-ing the presence of rationing, the proposal requiredsilent rationing in order to contain costs by limitingaccess to high-cost, low-yield treatments that a Na-tional Health Board would exclude from the 'guar-anteed benelit package."' In addition, it advancedmechanisms to slow technological innovation so as

further to reduce the visibility ofrationing choices.sOne does not have to ration that which is not avaii-able. There has been a failure to acknowledge themoral inevitability of inequalities in health care dueto the limits of secular governmental authority, hu-man freedom, and the existence of private property,however little that may be. There was also the failureto acknowledge the need to ration health care withincommunal programs if costs are to be contained.It has been ideologicaily unacceptable to recognizethese circumstances. . . .

Justice, Freedom, and lnequalityInterests in justice as benefrcence are motivated inpart by inequalities and in part by needs. That somehave so little while others have so much properlyevokes moral concerns of beneficence. Still, . . . themoral authority to use force to set such inequalitiesaside is limited. These limitations are in part due tothe circumstance that the resources one could use toaid those in need are already owned by other people.One must establish whether and when inequalitiesand needs generate rights or claims against others.

The Natural and Social Lotteries"Naturai lottery" is used to identify changes in for-tune that result from natural forces, not directly fromthe actions ofpersons. The natural lottery shapes the

distribution of both naturally and socially con;,-tioned assets. The natural lottery contrasts rvith ::.:social lottery, which is used to identify changes --fortune that are not the result of natural forces !*.the actions ofpersons. The social lottery shapes :,,.distribution of social and natural assets. The na:--ral and social lotteries, along with one's or{n i:;:decisions, determine the distribution of naturai a:,:sociai assets. The social lottery is termed a lotte:-though it is the outcome of personal actions, ,-.-cause of the complex and unpredictable interplar :

personal choices and because of the unpredicta:-.character of the outcomes, which do not conforn: : -

an ideai pattern and because the outcomes are -,1-,.

results of sociai forces, not the immediate choice. , :

those subject to them.All individuals are exposed to the vicissitudes . :

nature. Some are born healthy and by luck rem.,.so for a long life, free of disease and major sufferi:.Others are born with serious congenital or geni:diseases, others contract serious crippling fatal '

nesses early in life, and yet others are injured a:.maimed. Those who win the natural lottery u-il1 :-most of their lives not be in need of medical ca:They will live full lives and die painless and pea.=ful deaths. Those who lost the natural lotterv rr'il --

in need ofheaith care to blunt their sufferings a-

where possible, to cure their diseases and to resi;:function. There will be a spectrum of losses, rangr,=.

from minor problems such as having teeth with car .

ties to major tragedies such as developing childhcleukemia, inheriting Huntingtont chorea, or de','.oping amyelotrophic lateral sclerosis.

These tragic outcomes are the deliverances oi.,ture, for which no one, without some special r-ier. :

accountability or responsibility, is responsible -,.-1ess, that is, one recognizes them as the results oi-- .

Fall or as divine chastisements). The circumstar.:.that individuals are injured by hurricanes, stor:,'and earthquakes is often simply no oneb fault. \t-::.no one is to blame, no one may be charged n-ith :--.:responsibility of making whole those who lose :--:natural lottery on the ground of accountabiiin' :

the harm. One will need an argument dependent . *a particular sense offairness to show that the react:,of this volume should submit to the forcible redrs::.'bution of their resources to provide health care : :

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Page 5: Engelhardt Bioethics

656 YP^W"{ 4: }t}*-{2{-*. $Lt'at} *4fr&'L:{?'4 {:{43'X'

goods to others will not be whether such a redistri-bution will not prove onerous or excessive for theperson subjected to the distribution, but whether theresources belong to that individual. Consider thatyou may be reading this book next to a person ingreat need. The test of whether a third person maytake resources from you to help that individual inneed will not be whether you will suffer from thetransfer, but rather whether you have consented-atleast this is the case if the principle of permissionfunctions in general secular morality. . . ' The prin-ciple of permission is the source of authority whenmoral strangers collaborate, because they do notshare a common understanding of fairness or of thegood. As a consequence, goal-oriented approaches toihe lust distribution of resources must be restrictedto commonly owned goods, where there is authorityto create programs for their use.'

Therefore, one must qualify the conclusions ofthe 1983 American President's Commission for theStudy of Ethical Problems that suggest that exces-

sive burdens should determine the amount of taxpersons should pay to sustain an adequate level ofhealth care for those in need.5 Further, one will have

strong grounds for morally condemning systems

that attempt to impose an all-encompassing healthcare plan that would require "equality of care [in thesense ofavoidingl the creation ofa tiered system Iby]providing care based only on differences ofneed, notindividual or group characteristicsl'6 Those who are

rich are always at secular moral liberty to purchase

more and better health care.

Drawing the Line Between the Unfortunateand the UnfairHow one regards the moral significance of the natu-ral and social lotteries and the moral force of privateownership will determine how one draws the linebetween circumstances that are simply unfortunateand those that are unfortunate and in addition un-fair in the sense of constituting a claim on the re-

sources of others.Life in general, and health care in particular, re-

veal circumstances of enormous tragedy, suffering'and deprivation. The pains and sufferings of illness,

disabitity, and disease, as well as the limitaiions of de-

formity, call on the s)nnpathy of all to provide aid and

give comfort. Injuries, disabilities, and diseases due tothe forces ofnature are unfortunate. Injuries, disabili-ties, and diseases due to the unconsented-to actions ofothers are unfair. Still, outcomes of the unfair actionsof others are not necessarily societyt fault and are inthis sense unfortunate. The horrible injuries that comeevery night to the emergency rooms of major hospi-tals may be someone's fault, even if they are not thefault of sociery much less that of uninvolved citizens'Such outcomes, though unfair with regard to the rela-

tionship of the injured with the injurer, may be simplyunfortunate with respect to society and other citizens(and may licitly be financially exploited)' One is thusfaced with distinguishing the dillicult line betweenacts of God, as well as immoral acts of individualsthat do not constitute a basis for societal retributionon the one hand, and injuries that provide such a basis

on the other.A line must be created between those losses that

will be made whole through public funds and thosethat will not. Such a line was drawn in rg8o by Pa-

tricia Harris, the then secretary of the Departmentof Heaith, Education, and Welfare, when she ruledthat heart transplantations should be considered ex-

perimental and therefore not reimbursable throughMedicare.T To be in need of a heart transplant andnot have the funds available would be an unfortu-nate circumstance but not unfair. One was not eli-gible for a heart transplant even if another personhad intentionally damaged one's heart. From a moraipoint of view, things would have been different if thefederal government had in some culpable fashioninjured one's heart. So, too, if promises of treatmenthad been made. For example, to suffer from appen-dicitis or pneumonia and not as a qualifying patientreceive treatment guaranteed through a particulargovernmental or private insurance system would be

unfair, not simply unfortunate.Drawing the line between the unfair and the un-

fortunate is unavoidable because it is impossible ingeneral secular moral terms to translate all needsinto rights, into claims against the resources of oth-ers. One must with care decide where the line is tobe drawn. To distinguish needs from mere desires,one must endorse one among the many competingvisions of morality and human flourishing' One isforced to draw a line between those needs (or de-

Page 6: Engelhardt Bioethics

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alqelre^EJo lsrl peururrelapa-rd e uror; dluo eJeJqlpeq pelas o1 spnpr,r.rpur SurmolleJo asues eql

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Page 7: Engelhardt Bioethics

658 ?&nT 4: jLJbTXt'fr' h'?4* ?41"&LSW tk?'fr'

resources. In this understanding, it is assumed that

societally based entitlements have moral priority'Nozick, in contrast, advances a historicai account ofjust distributions within which justice depends on

what individuals have agreed to do with and for each

other. Nozick holds that individually based entitle-

ments are morally prior to societally based entitle-ments. In contrast with Rawls, who argues that one

can discover a proper pattern for the allocation of

resources, Nozick argues that such a pattern cannot

be discovered and that instead one can only identiflithe characteristics of a just process for fashioning

rights to health care. . . .

The differences between N ozick of Anarchy' State'

and tltopia and Rawls of A Theory oflustice express

themselves in different accounts of entitlements and

ownership, and in different understandings ofnon-principled fortune and misfortune' For Rawls' one

i-rus lurtifiable title to goods if such a titie is part of a

systlm that ensures the greatest benefit to the least

advantaged, consistent with a just-savings principle'

and witt offices and positions open to all under con-

ditions of fair equality and opportunity' and where

each person has an equal right to the most extensive

total iystem of equai tasic liberties compatible with

u ,irnilu, system of liberty for all' In contrast' for

Nozick, one simply owns things: "Things come into

the world already attached to people having entitle-ments over theml'" If one really owns things' there

will be freedom-based limitations on principles of

distributive justice. One may not use people or their

property without their permission or authorization'ft-r. tt..at of others will not erase one's propertyrights. The readers of this book should consider that

th"ey may be wearing wedding rings or glltt jtY:kynot essential to their lives, which could be sold to

buy antibiotics to save identifiable lives i'n the thirdworld. Those who keep such baubles may in part

be acting in agreement with Nozick's account and

ciaiminglhat "it is my right to keep my wedding ring

fo, -y.l.f, even though the proceeds from its sale

could save the lives of individuals in dire needl'

Nozicks account requires a distinction between

someone's secular moral rights and what is right'good, or proper to do' At times, selling some (per-

ilaps all) ofo".t Property to support the health care

ofiho.. in need will be the right thing to do' even

though one has a secular moral right to refuse tc "'-"This contrast derives from the distinction \c;.:"makes betwee n freedom as a side constraint' zs -'- -

very condition for the possibility ofa secular n:t:'community, and freedom as one value among ott:t*:This contrast can be understood as a distinction ::-tween those claims of justice based on the verr pt '-sibilrty of a moral community, versus those clai::-'oflustice that turn on interests in particular got-:'and values, albeit interests recognized in the orieir ''position. For Nozick, one may not use innocent lree

p.rron, without their consent, even if that use rni-

save lives by providing needed health care or secur-

ing equality of opportunity' Even if such would be a

go;a ihhg to do (e.g., in this sense of saving lives '

io ot. ha-s a right to do it' Because for Nozick one

needs the actual consent of actual persons in order

to respect them as free persons, their rights can mor-

ally foreclose the pursuit of many morally worthrgoals. In contrast, Rawls treats freedom or liberq- as

a value. As a consequence, in developing just institu-tions, Rawls does not require actual consent ofthoseinvolved. As a result, Rawls would allow rights to self-

determination to be limited in order to achieve im-portant social goals. .. '

This contrast between Rawls and Nozick can be

appreciated more generally as a contrast between

two quite different principles of justice' each ofwhich has strikingly different implications for the

allocation of health care resources'

r. Freedom- or permission-based justice is

concerned with distributions of goods made

in accord with the notion of the secular moralcommunity as a peaceable social structurebinding moral strangers, members of diverse

.or-t...t. moral communities' Such justice wilitherefore require the consent ofthe individu-als involved in a historical nexus ofjustice-regarding institutions understood in conformity*it ttt. ptit-t.iple of permission' The principleof beneficence may be pursued only withinconstraints set by the principle of permission'

z. Goals-based justice is concerned with the

achievement of the good of individuals insociety, where the pursuit ofbeneficence is notconstrained by a strong principle of permis-

Page 8: Engelhardt Bioethics

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-SIUIJaT

JOU Sr OlUur slraqt I

.UOISSITU.

uIrllI-\'aldr:uud..Qnuro-1u,.

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aLI] roJ su

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JapJo ur sr

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IuJoru IPI:.eql s€ 'll1ir

{rrzoN u-']las ol as:_

Page 9: Engelhardt Bioethics

660 ?&?^{ 4: }W*7|fi*, &'?4t} ?4*"&L:{t4 {&3"8'

be determined by people expressing their valuesthrough social and political processes as well as

in the marketplacei'u The Commission, however,also suggested that the concept of adequacy couldin part be discovered by an appeal to that amountof care that would meet the standards of soundmedical practice. 'Adequacy does require thateveryone receive care that meets standards ofsound medical practice."'a But what one meansby "sound medical practice" is itself dependenton particular understandings within particularcultures. Criteria for sound medical practice are

as much created as discovered. The moral inevita-bility of multiple tiers of care brings with it multi-ple standards ofproper or sound medical practiceand undermines the moral plausibiiity of variousobiter dicta concerning the centralized allocationof medical resources. . . .

NOTESr. The White House Domestic Policy Council, The President's

Health Security Plcn (New York: Times Books, 1993)'

z. The White House Domestic Policy Council, The President\Health Security Plan, p. 43.

3. Innovation would be discouraged as drug prices are

subject to review as reasonable. The White House DomesticPolicy Council, The President\ Health Security Plan, p' 45'

4. In considering how to respond to the plight of the impe-cunious, one might consider the story Iesus tells of the richman who fails to give alms to "a certain beggar named Laza-

rus, ful1 of sores, who was laid at his gate, desiring to be fed

with the crumbs which feil from the rich man's table" (Luke

t6.zo-zr). The rich man, who was not forthcoming with alms'was condemned to a hell of excruciating torment.

5. President's Commission for the Study of Ethical Problemsin Medicine and Biomedical and Behavioral Research, Secur-

ing Access to Health Care (Washington, DC.: U.S. Govern-ment Printing Ofice, 1983), vo1. t, pp. $-46'

6. The White House Domestic Policy Council. "EthicalFoundations of Health Reforml' ln The President\ HealthSecurity Plan,p. u.7 H. Newman, "Exclusion of Heart Transplantation Pro-

cedures from Medicare Coverage," Federal Regkter 45 (Atg'6, r98o): 522,96. See also H. Newman, "Medicare Program:Solicitation of Hospitals and Medical Centers to Participatein a Study ofHeart Transplants." Federal Register 46 (Ian. zz'

198r):7o72-75.8. The reader should understand that the author holds that

almsgiving is one of the proper responses to human suffering(in addition to being an appropriate expression of repentancean act of repentance to which surely the author is obligated)'It is just that the author acknowledges the limited secularmoral authority of the state to compel charity coercively.

9. President's Commission, Securing Access to Health Care,

vol. t, pp. r8-t9.ro. john Rawls, A Theory of Iustice (Cambridge, Mass.:

Harvard University Press, r97l), and RobertNoz\ck, Anarch"State, and Ufopla (New York: Basic Books, 1974).

rr. Nozick, Anarchy, State, and Utopia, p. t6o.rz. Flavius Petrus Sabbatius |ustinianus, The Institutes of lustinian,trans. Thomas C. Sandars (r9zz;repr. Westport, ConnGreenwood Press, r97o), r.i P. 5.

r:. President's Commission, Securing Access to Health Care'

vo1. r, p.3zr+. Ibid.

Ration i ng Fai rly: Program matic ConsiderationsNORMAN DANIELS

Daniels explores four Problems of iustice that arise in health care rationinS-Problemsthat afflict the Oregon rationing plan and that bioethics is still unsure how to solve'

These are rhe problems of ( l ) fair chances/best outcomes, (2) priorities, (3) aggrega-

tion, and (4) democracy. He concludes with a plea against provincialism:"Being provin-

cial about health care rationing will prevent us from seeing relationships among these

rationing problems."