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Who lives? Who dies? Ethical criteria in patient selection
Sot. Sci. Med. Vol. 3 I, No. 10, pp. I 187-I 189, 1990 Pergamon Press pk. Printed in Great Britain
BOOK REVIEWS
Normal Accidents. Living with High-Risk Technologies, by C. F’ERROW. Basic Books, New York, 1987. 386 pages, $29.95.
According to The Devil’s Dictionary an accident is “an inevitable occurrence due to the action of immutable natural laws”. Charles Perrow’s study of Three Mile Island’s reactor fire, Texas City’s conflagrations, the Apollo launch pad fire, the Torrey Canyon oil spill (inter aliu) proves the truth of Amrose Bierce’s sly definition. And Perrow’s autopsies of these disasters are the more compelling because the book appeared before Chernobyl, before Bhopal, before Chullenger, before Folder-yet adumbrates them ail. The devilish paradox of accidents is their inevitability. Unpredictable at the micro level, they become inevitable even ‘normal’-at the macro level: You can’t tell when and what accident will next occur on your own street, but you can tell next year’s U.S. highway death toll give or take a few percentage points. Accidents are ‘normal’ and inevitable when failures interact in unforseen ways, as when one event simultaneously starts a fire and disables the alarm system. DEPOSE is Perrow’s mnemonic for systematic components of normal accidents: design, equipment, procedures, operators, supplies plus materials, and environment. No one alone is causative but failures in two or more components interact in unexpected ways becausse of how the system is tied together; couplings in parallel, as it were, not in series promote accidents. The greater the interactive complexity of a system and the tighter the coupling, the greater the chance of normal accidents. Linear systems oppose such accidents, especially when their components possess spatial separation, ‘dedicated’ (unidirectional, specific) connections, segregated subsystems, easy substitutions of component parts, a minimum of feedback loops, single-purpose/segregated controls, and operators with direct access to information. You probably thought air safety was getting worse, but Perrow is relatively benign about U.S. aviation. Over the years safety procedures have evolved along the linearity and
who Lives? Who Dies? Ethical Criteria in Patient Selection, by JOHN F. KILNER.Yale University Press, New Haven, CT,
1990. 359 pp. f29.95. Both organized medicine and public opinion in the United States have generally denied that scarce resource allocation is a serious enough problem in the distribution of medical services to warrant frank acknowledgement; both, moreover, typically prefer to say nothing of the need for guidelines or rules for distribution. Ail the same, more and more attention is being paid to this matter. The first sustained systematic treatment of this genre of issues was Robert Weir’s Selective Nontreatment of Handicupped Newborns (Oxford University Press, Oxford, 1984, 292 pp.) which received extensive review in Social Science and Medicine (20(11), 1083-i 117, 1985) within a year of its publication. While Weir’s essay dealt with the specific matter of resource allocation to very sick babies, more recent monographs by Robert Blank (Rationing Medicine, Columbia UniversityPress, New York 1988, 273 pp.) and Larry Churchill (Rationing Health Care in America: Perceptions and Principles of Justice, University of Notre Dame
loose coupling guidelines he favors. Relative to the seas, the heavens are quite safe. Perrow provides page after page of eery diagrams of marine collisions, ghastly spirals of two ships toward each other, disaster avoidable at any point along the way but the two captains ‘correcting, correcting’ until-. And if the seas are a mess, reactors and laboratories are invitations to gneo-suicide. Nuclear plants and recombinant DNA labs give Pet-row the creeps. Their inherently tight couplings and low linearity spell vulnerability at every level of DEPOSE. He finds them inherently unseriai, unstable, and mischief-prone (to say the least). Normal Accidents received positive if puzzled reviews when it came out. For the U.S. safety establishment it belabored the obvious, but for the public, it claimed the unbelievable-such is the gulf between the thousands of safety careerists in government, industry, the military, labor, and the non-profits on the one hand and their public on the other. The ordinary citizen persists in stolid, healthy quotidian denial: “Somebody else, not me.” Professional epidemiologists never use the word accident, they study injury, they don’t believe in accident proneness. But the ordinary Joe knows that somebody out there has got to be unluckier and that somebody protects him from accidents closer to home. Normal Accidents is must reading for anybody who wants an inkling of the chasm between the public and the safety establishment; but don’t necessarily expect them to speak your language-the pros never read the Preacher: “I returned, and saw under the sun, that the race is not to the swift, nor the battle to the strong, neither yet bread to the wise. . . but time and chance happeneth to them all.” Where the safety establishment fails is in realizing that human denial is like digitalis: it kills in high doses or the wrong disease. But appropriately administered, it prolongs life and enhances its quality. Harvard Medical School Cambridge MA 02138, U.S.A.
Jm
E. Gttovm
Press, South Bend, IN, 1987, 177 pp.) have addressed a broader range of complex issues which relate to the distribution of medical care in this country. And currently one western state (Oregon) is considering landmark legislation which would establish operational priorities and limitations for receiving publicly supported medical services. But beyond mere recognition that medical resources are scarce and that medical care has always been rationed in the U.S., these essays, and the politics which carve out responses to these issues demonstrate that scarcity and rationing are hardly novel, and that allocation systems of one or another sort have been in place and operative in this society for a long time. What accounts for the reluctance of organized medicine and the general populace to admit in the public square that there is a problem, and that steps need to be taken to address it? Part of the answer to that question appears to lie in a cherished mythology which is at the heart of the American dream: in this land of opportunity, no bona fide human need ought to go governmentally or socially neglected or unattended because we have resources suB%ent for all; therefore we should not need to worry about who gets how
1187
1188
Book Reviews
much of what, because there is plenty to go around. So it tends to be unthinkable-not inoperative, just indelicatcto most Americans that anyone in any kind of medical need ought to be denied or deprived of the medical service which would meet that need. Scarcity, however, is an artifact of technology; and the advance of medical technology is matched step for step by increases in scarce medical technology. So who-gets-howmuch-of-what-when-there-is-aoftnough-to-go-around has become an increasingly urgent question in the U.S.; and any attempt to identify and address these matters of distributive justice in an environment which otherwise prefers to repress or ignore them ought to be welcomed. John Kilner’s book begins with acknowledgment that various resource scarcities-instruments, machines, drugs, money, er u/.---exist throughout the world; but he concentrates his attention on the problem in the U.S. He prefers “patient selection” to descriptions like triage and rationing, and means to include “any stage at which classes of people. . . are barred from further consideration or individual patients are selected for treatment” (p. xi). He attends specifically to an assessment of 15 “patient selection criteria” which he has identified through a study of U.S. medical directors and which have “significant support”. (‘Sex’ is a criterion identified but not examined owing to lack of significant support from respondents.) These IS criteria fall broadlv into four sets which are identified in an abbreviated form here: social crireriu [social value, favored
group, little of much resources required, and special responsibilities (e.g. parents)]; sociomedicuf benefit [age, psychological ability, and supportive environment]; medical benefr [medical benefit, imminent death, likelihood of benefit, length of benefit and quality of benefit]; personal benefir [willingness to accept responsibility for health, ability to pay, and random selection to reflect egalitarianism]. With each criterion, Kilner considers arguments pro and con, deliberates whether he perceives any common ground between them, and then proceeds to conclude with his own assessment of the public support which this criterion is likely to secure in “today’s pluralistic setting”, together with an illustrative case study. These chapters are the meat of the book and identify the questions and issues deemed relevant by the author for patient selection in the face of scarce medical resources. His arguments chiefly examine the advantages and disadvantages of what he calls “productivity oriented” (otherwise generally familiar as utilitarian) or “person oriented” (otherwise generally familiar as libertarian) ethics, terms which he prefers because he believes them to be less restrictive and “more ethically discerning” than the traditional categories. The penultimate chapter examines issues associated with access to treatment which is frankly experimental, and illustrates many of the lexical and grammatical infelicities which I found to be problematic throughout the book. For example, here is the opening sentence in the “Possible Common Ground” section of this chapter: “The experimental nature of a resource may not justify patient selection criteria that would not otherwise be legitimate, but it may well alter the way in’which otherwise legitimate criteria are applied.” What does-this mean? What can this mean? In the final chapter Kilner undertakes to summarize his major conclusions and make some comparative judgments about how productivity-oriented and person-oriented arguments fare in the U.S. and in Kenya (where he interviewed healers among the Akamba). He believes that seven of his examined criteria [viz., medical benefit, imminent death, likelihood of benefit, resources required, special responsibilities, willingness to accept treatment, and random selection (most often in the first-come, first-served mode)] are widely
acceptable in the U.S. But now, 10 pages from the final page of text, he introduces the suggestion that gaining social consensus “does not necessarily make them right from an ethical perspective” (p. 226). The reason is that “person oriented concerns should be given clear priority over productivity oriented concerns” (p. 227). This is a proposition with which many readers might heartily agree. Yet clear and distinct argument by the author as to why productivity should be subordinated to persons is missing here; and that is unfortunte because such an argument is critical in discussions of distributive justice. His summary conclusions with regard to selecting recipients of limited lifesaving medical resources are that: “1. Only patients who satisfy the medical-benefit and willing-to-accept-treatment criteria are to be considered eligible. 2. Available resources are to be given first to eligible patients who satisfy the imminent-death criterion, and next to eligible patients who satisfy the specialresponsibilities or resources-required criterion. 3. If resources are still available, recipients are to be randomly selected, generally by lottery, from among the remaining eligible patients.” (p. 230) Readers will discover that the text is generously and instructively punctuated with references; they will also discover that the publisher has inconveniently located these notes seriarim between the final chapter and an extensive biblionraohv. Of the book’s total of 359 oaees. I I5 oases are devoteh io *notes and references cited;’ and ‘that -is a rich repast which could be indigestible in only twice as much text. The book’s format allows each criterion to receive individual analysis and assessment; but it does little or nothing to show how various criteria impinge on each other. That seems to me a particularly disabling help to readers who, I imagine, are most likely to be people with some experience in these matters already, and therefore impressed with the subtlety and complexity and inextricable interconnectedness of these issues. Moreover. while Kilner treats each criterion with determination, the book as a whole becomes cumbrous and labored. It is, in fact, rather too wooden, and too severely structured to encourage much moral imagination beyond what the public traffic will bear. The author might have begun with a frank acknowledgment of the ethical assumptions which shape and inform his inquiry, or with the moral grounds on which adequacy and inadequacy are assessed, or with the professional standards of a practice like medicine which give it vocational credibility. He might have started, in other words, with a story, such as he proposes at the end, which would provide the basis for conflict-resolution, which is otherwise lacking when there are no (or minimally) shared notions about what is right and good and true. That would have provided a coherence and cogency which the arguments, overall, want; because Alisdair MacIntyre was right to claim that there can be no rational resolution of moral dispute in the absence of common commitments. But the author’s goal, as it turns out, is not so much to do with ethical analysis or moral theory as it is to discover whether there is a cultural consensus for certain criteria, and thereafter nominate these as acceptable. The attempt to deduce those aspects of a criterion which are most likely to be “widely recognized in society at large as ethically acceptable” (p. xii) constitutes the conclusion to each chapter; and, with the reservations indicated, the author’s final assessment and proposal. The Diviniry School Duke Vniversiry Durham, NC 27706, U.S.A.
HARMONL. SETH
BOOK REVIEWS
Normal Accidents. Living with High-Risk Technologies, by C. F’ERROW. Basic Books, New York, 1987. 386 pages, $29.95.
According to The Devil’s Dictionary an accident is “an inevitable occurrence due to the action of immutable natural laws”. Charles Perrow’s study of Three Mile Island’s reactor fire, Texas City’s conflagrations, the Apollo launch pad fire, the Torrey Canyon oil spill (inter aliu) proves the truth of Amrose Bierce’s sly definition. And Perrow’s autopsies of these disasters are the more compelling because the book appeared before Chernobyl, before Bhopal, before Chullenger, before Folder-yet adumbrates them ail. The devilish paradox of accidents is their inevitability. Unpredictable at the micro level, they become inevitable even ‘normal’-at the macro level: You can’t tell when and what accident will next occur on your own street, but you can tell next year’s U.S. highway death toll give or take a few percentage points. Accidents are ‘normal’ and inevitable when failures interact in unforseen ways, as when one event simultaneously starts a fire and disables the alarm system. DEPOSE is Perrow’s mnemonic for systematic components of normal accidents: design, equipment, procedures, operators, supplies plus materials, and environment. No one alone is causative but failures in two or more components interact in unexpected ways becausse of how the system is tied together; couplings in parallel, as it were, not in series promote accidents. The greater the interactive complexity of a system and the tighter the coupling, the greater the chance of normal accidents. Linear systems oppose such accidents, especially when their components possess spatial separation, ‘dedicated’ (unidirectional, specific) connections, segregated subsystems, easy substitutions of component parts, a minimum of feedback loops, single-purpose/segregated controls, and operators with direct access to information. You probably thought air safety was getting worse, but Perrow is relatively benign about U.S. aviation. Over the years safety procedures have evolved along the linearity and
who Lives? Who Dies? Ethical Criteria in Patient Selection, by JOHN F. KILNER.Yale University Press, New Haven, CT,
1990. 359 pp. f29.95. Both organized medicine and public opinion in the United States have generally denied that scarce resource allocation is a serious enough problem in the distribution of medical services to warrant frank acknowledgement; both, moreover, typically prefer to say nothing of the need for guidelines or rules for distribution. Ail the same, more and more attention is being paid to this matter. The first sustained systematic treatment of this genre of issues was Robert Weir’s Selective Nontreatment of Handicupped Newborns (Oxford University Press, Oxford, 1984, 292 pp.) which received extensive review in Social Science and Medicine (20(11), 1083-i 117, 1985) within a year of its publication. While Weir’s essay dealt with the specific matter of resource allocation to very sick babies, more recent monographs by Robert Blank (Rationing Medicine, Columbia UniversityPress, New York 1988, 273 pp.) and Larry Churchill (Rationing Health Care in America: Perceptions and Principles of Justice, University of Notre Dame
loose coupling guidelines he favors. Relative to the seas, the heavens are quite safe. Perrow provides page after page of eery diagrams of marine collisions, ghastly spirals of two ships toward each other, disaster avoidable at any point along the way but the two captains ‘correcting, correcting’ until-. And if the seas are a mess, reactors and laboratories are invitations to gneo-suicide. Nuclear plants and recombinant DNA labs give Pet-row the creeps. Their inherently tight couplings and low linearity spell vulnerability at every level of DEPOSE. He finds them inherently unseriai, unstable, and mischief-prone (to say the least). Normal Accidents received positive if puzzled reviews when it came out. For the U.S. safety establishment it belabored the obvious, but for the public, it claimed the unbelievable-such is the gulf between the thousands of safety careerists in government, industry, the military, labor, and the non-profits on the one hand and their public on the other. The ordinary citizen persists in stolid, healthy quotidian denial: “Somebody else, not me.” Professional epidemiologists never use the word accident, they study injury, they don’t believe in accident proneness. But the ordinary Joe knows that somebody out there has got to be unluckier and that somebody protects him from accidents closer to home. Normal Accidents is must reading for anybody who wants an inkling of the chasm between the public and the safety establishment; but don’t necessarily expect them to speak your language-the pros never read the Preacher: “I returned, and saw under the sun, that the race is not to the swift, nor the battle to the strong, neither yet bread to the wise. . . but time and chance happeneth to them all.” Where the safety establishment fails is in realizing that human denial is like digitalis: it kills in high doses or the wrong disease. But appropriately administered, it prolongs life and enhances its quality. Harvard Medical School Cambridge MA 02138, U.S.A.
Jm
E. Gttovm
Press, South Bend, IN, 1987, 177 pp.) have addressed a broader range of complex issues which relate to the distribution of medical care in this country. And currently one western state (Oregon) is considering landmark legislation which would establish operational priorities and limitations for receiving publicly supported medical services. But beyond mere recognition that medical resources are scarce and that medical care has always been rationed in the U.S., these essays, and the politics which carve out responses to these issues demonstrate that scarcity and rationing are hardly novel, and that allocation systems of one or another sort have been in place and operative in this society for a long time. What accounts for the reluctance of organized medicine and the general populace to admit in the public square that there is a problem, and that steps need to be taken to address it? Part of the answer to that question appears to lie in a cherished mythology which is at the heart of the American dream: in this land of opportunity, no bona fide human need ought to go governmentally or socially neglected or unattended because we have resources suB%ent for all; therefore we should not need to worry about who gets how
1187
1188
Book Reviews
much of what, because there is plenty to go around. So it tends to be unthinkable-not inoperative, just indelicatcto most Americans that anyone in any kind of medical need ought to be denied or deprived of the medical service which would meet that need. Scarcity, however, is an artifact of technology; and the advance of medical technology is matched step for step by increases in scarce medical technology. So who-gets-howmuch-of-what-when-there-is-aoftnough-to-go-around has become an increasingly urgent question in the U.S.; and any attempt to identify and address these matters of distributive justice in an environment which otherwise prefers to repress or ignore them ought to be welcomed. John Kilner’s book begins with acknowledgment that various resource scarcities-instruments, machines, drugs, money, er u/.---exist throughout the world; but he concentrates his attention on the problem in the U.S. He prefers “patient selection” to descriptions like triage and rationing, and means to include “any stage at which classes of people. . . are barred from further consideration or individual patients are selected for treatment” (p. xi). He attends specifically to an assessment of 15 “patient selection criteria” which he has identified through a study of U.S. medical directors and which have “significant support”. (‘Sex’ is a criterion identified but not examined owing to lack of significant support from respondents.) These IS criteria fall broadlv into four sets which are identified in an abbreviated form here: social crireriu [social value, favored
group, little of much resources required, and special responsibilities (e.g. parents)]; sociomedicuf benefit [age, psychological ability, and supportive environment]; medical benefr [medical benefit, imminent death, likelihood of benefit, length of benefit and quality of benefit]; personal benefir [willingness to accept responsibility for health, ability to pay, and random selection to reflect egalitarianism]. With each criterion, Kilner considers arguments pro and con, deliberates whether he perceives any common ground between them, and then proceeds to conclude with his own assessment of the public support which this criterion is likely to secure in “today’s pluralistic setting”, together with an illustrative case study. These chapters are the meat of the book and identify the questions and issues deemed relevant by the author for patient selection in the face of scarce medical resources. His arguments chiefly examine the advantages and disadvantages of what he calls “productivity oriented” (otherwise generally familiar as utilitarian) or “person oriented” (otherwise generally familiar as libertarian) ethics, terms which he prefers because he believes them to be less restrictive and “more ethically discerning” than the traditional categories. The penultimate chapter examines issues associated with access to treatment which is frankly experimental, and illustrates many of the lexical and grammatical infelicities which I found to be problematic throughout the book. For example, here is the opening sentence in the “Possible Common Ground” section of this chapter: “The experimental nature of a resource may not justify patient selection criteria that would not otherwise be legitimate, but it may well alter the way in’which otherwise legitimate criteria are applied.” What does-this mean? What can this mean? In the final chapter Kilner undertakes to summarize his major conclusions and make some comparative judgments about how productivity-oriented and person-oriented arguments fare in the U.S. and in Kenya (where he interviewed healers among the Akamba). He believes that seven of his examined criteria [viz., medical benefit, imminent death, likelihood of benefit, resources required, special responsibilities, willingness to accept treatment, and random selection (most often in the first-come, first-served mode)] are widely
acceptable in the U.S. But now, 10 pages from the final page of text, he introduces the suggestion that gaining social consensus “does not necessarily make them right from an ethical perspective” (p. 226). The reason is that “person oriented concerns should be given clear priority over productivity oriented concerns” (p. 227). This is a proposition with which many readers might heartily agree. Yet clear and distinct argument by the author as to why productivity should be subordinated to persons is missing here; and that is unfortunte because such an argument is critical in discussions of distributive justice. His summary conclusions with regard to selecting recipients of limited lifesaving medical resources are that: “1. Only patients who satisfy the medical-benefit and willing-to-accept-treatment criteria are to be considered eligible. 2. Available resources are to be given first to eligible patients who satisfy the imminent-death criterion, and next to eligible patients who satisfy the specialresponsibilities or resources-required criterion. 3. If resources are still available, recipients are to be randomly selected, generally by lottery, from among the remaining eligible patients.” (p. 230) Readers will discover that the text is generously and instructively punctuated with references; they will also discover that the publisher has inconveniently located these notes seriarim between the final chapter and an extensive biblionraohv. Of the book’s total of 359 oaees. I I5 oases are devoteh io *notes and references cited;’ and ‘that -is a rich repast which could be indigestible in only twice as much text. The book’s format allows each criterion to receive individual analysis and assessment; but it does little or nothing to show how various criteria impinge on each other. That seems to me a particularly disabling help to readers who, I imagine, are most likely to be people with some experience in these matters already, and therefore impressed with the subtlety and complexity and inextricable interconnectedness of these issues. Moreover. while Kilner treats each criterion with determination, the book as a whole becomes cumbrous and labored. It is, in fact, rather too wooden, and too severely structured to encourage much moral imagination beyond what the public traffic will bear. The author might have begun with a frank acknowledgment of the ethical assumptions which shape and inform his inquiry, or with the moral grounds on which adequacy and inadequacy are assessed, or with the professional standards of a practice like medicine which give it vocational credibility. He might have started, in other words, with a story, such as he proposes at the end, which would provide the basis for conflict-resolution, which is otherwise lacking when there are no (or minimally) shared notions about what is right and good and true. That would have provided a coherence and cogency which the arguments, overall, want; because Alisdair MacIntyre was right to claim that there can be no rational resolution of moral dispute in the absence of common commitments. But the author’s goal, as it turns out, is not so much to do with ethical analysis or moral theory as it is to discover whether there is a cultural consensus for certain criteria, and thereafter nominate these as acceptable. The attempt to deduce those aspects of a criterion which are most likely to be “widely recognized in society at large as ethically acceptable” (p. xii) constitutes the conclusion to each chapter; and, with the reservations indicated, the author’s final assessment and proposal. The Diviniry School Duke Vniversiry Durham, NC 27706, U.S.A.
HARMONL. SETH