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# aƗϗzzE⑫

V@2007/02/10
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last update: 20151224

MS WordŁFhttp://www.ritsumei.ac.jp/acd/gr/gsce/s/ky01/n_e_s.doc

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Renee C. Fox, Experiment Perilous: Physicians and Patients Facing the Unknown (Transaction Publishers, 1959/1998)
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cuu×ϗɂuƎÂ̋ʁv̗jIӋ\\Ĕr̎_vwՏϗxNo.4(2006)
D.A. Hughes et al., 'Drugs for exceptionally rare diseases:
do they deserve special status for funding?', Q J Med 2005; 98; 829-836.
Robert D. Truog, "Dying Patients as Research Subjects",
The Hastings Center Report; Jan/Feb 2003; 33,1
Rebecca D. Pentz et al., "Revisiting ethical guidelines for research with terminal wean and brain-dead participants", The Hastings Center Report; Jan/Feb 2003; 33, 1.
Anna Mastroianni and Jeffry Kahn, "Shifting views of justice in human subjects research", The Hastings Center Report; May/Jun 2001; 31, 3.
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Deborah A. Stone, The Disabled State (Temple University Press, 1984)
Linda Ganzini and Susan Block, "Editorials: Physician-assisted death\\a last resort?", The New England Journal of Medicine, May 23, 2002. Vol.346, Iss.21.
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The New England Journal of Medicine, May 23, 2002. Vol.346, Iss. 21.
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Tom L. Beauchamp, "The Right to Die as the Triumph of Autonomy",
Journal of Medicine and Philosophy, 31: 643-654, 2006.
Herbert Hendin, "Selling Death and Dignity",
Hastings Center Report 25, no.3 (1995): 19-23.
Leon R. Kass, "Is There a Right to Die?",
Hastings Center Report (January-February 1993): 34-43.
ΈUuVlւ̈Â͖Ӗ@sVl̐ے肷u|EL񍐏vvwЉی{x1973 (1998.2.1.)

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u̎Au悢a@⌤ƂȂƁA͐ԎɂȂ܂AłvƁAsmɔOƁAuŌ\vƒm͌ꂽBmƂẮAs܂hȘVla@Ă΁Aꂪ{ƂȂāA͓sႢx̂̂͂Ȃ낤AƂ悤ȐS\ĂBcc{̈Â邩ɂ́As̎ZÂɂȂɌ܂ĂB̂Ƃs̈牭~̍Ԏ̉߂悤ƂA͈Ƃ͌ĎvĂȂBcclɗȂAЉ͕ЕtȂBv(270-271) u͐aɌ炸Aɐ_E_o̗Տ͂ĂAoIɂƂ炦悤ƂĂ̂E邱Ƃ₦ӎĂBႦ΁Aa̎l̂тꊴЂƂĂ݂ĂAUdʂؓd}ȂǂgĂ𖾗ĂɐlAqω邱Ƃ́A܂s\ɋ߂ɂ߂čłB܂X҂ُ̈튴óA΂ɐlA͐}Av̂ɂȂސî̂ł͂Ȃ̂łB @a̎oǂłAuYꂪЂǂvuCȂvu₷vXAȂBAoǂ̑ʐALxApx̍Ȃǂ́Aoǂɔ䂷ׂȂB @AwRȊwƂĂ̂ݔFĂA̎oǂ͈w̑ΏۂƂĂ͒᎟݂̑ƂĈʒutĂBāAw͂ƂARȊwIwAƊg傷ΐȊwA_oȊw̑ΏۂƂāẢl߂AsɒႭ]ĂB̈Ӗł́Aw܂RȊŵЂƂłƂƁARȊwƂ͈̉Ӗ̂ǍE͂ǂ܂łƂlARAサė𓾂ȂBv(274-275) ulԂ̂̎Ԃ݂΁AoǂƑoǂ̗҂𓯂xAiƂĂƂ炦Ă͓̂R̂ƂȂ̂ɁA킪łȂĂ̈włA̓_͌ď\ł͂ȂAꂪwׂ̌̂ЂƂłƍlĂB @t΁A{Aw̍łSɈʒuȂ΂ȂȂ̂ɁAꑱĂ҂́uoǁv̖ANwƗϗ̗̈Ƃ̊֘AɂĖmɂȂAa̖{ɋߕtƂ͂łȂƍlBl\Nȏvɂ炸Aa܂ɐ^̉ɓBĂȂ̂́Â߂ƎvĂȂȂBv(277) gw̒\\_ois؈ޏkǁEwp҂Ƃ50N\\xiXA1999Nj kaAEB\ǁA؈ޏkdǁiA~gj uƂ̐l̎v(22) ua@ŐV̔Ɩ𐿂vua@r[̈pɔ̔v(42) Renee C. Fox, Experiment Perilous: Physicians and Patients Facing the Unknown (Transaction Publishers, 1959/1998) F-Second was an all-male, fifteen-bed metabolic research ward in a small but renowned teaching hospital, affiliated with a prominent medical school, located in one of the major cities of New England. A considerable number of patients hospitalized on Ward F-Second were ill with diseases that are still not well understood and cannot be effectively controlled by present-day medical science. Partly as a consequence, many of these patients had as research subjects for the so-called Metabolic Group of the hospital. This was a team of eleven young physicians: clinical investigators, whose dual responsibility was to care for the patients of F-Second and also to conduct research upon them. (13) In many respects, the period during which the observations of the Metabolic Group and Ward F-Second ware made was an exciting, forward-going time of progress in the history of this clinical research unit. After a half-century of intensive investigation by the medical profession at large, a number of the hormones produced by the adrenal cortex had been discovered and synthesized, and were being tried on a host of diseases, in some instances with what appeared to be dramatic therapeutic effects. Within the framework of these medical-scientific advances, the Metabolic Group itself was engaged in assaying the activity of activity of newly-synthesized steroids that had shown potential usefulness as therapeutic agents when tried on laboratory animals. They were administering these compounds to patients with a wide variety of clinical conditions (primarily metabolic, endocrinological, cardiovascular, renal, and malignant diseases); experiencing with various modes (intravenous, intramuscular, and oral) of administering them; and studying their biochemical, biological, and clinical effects. At the same time, in the laboratory, the Group was making steady progress in developing standardized methods for the quantitative measurement of adrenal response in man. Perhaps the most heartening events which the Metabolic Group experienced during this period were those connected with the diagnosis and treatment of Addison's disease (adrenal cortical insufficiency). The advent of ACTH and cortisone had opened a new chapter in the clinical management of this condition, which until this time had been incapacitating and, in many instances, fatal. The Group had done pioneer work in developing an ACTH test for rapidly and accurately diagnosing this disease, and in evolving a regimen for treating it with cortisone. Largely as a result of their research and experimentation, it had become possible to maintain the majority of such patients in good health, and to restore many of them to an active, normal life. (16-17) The work of the Metabolic Group with total bilateral adrenalectomy, hemodialysis, and kidney transplants was connected with some of the more somber and discouraging aspects of their endeavors. For the period during which the physicians of the Metabolic Group were observed was not simply a time when they were enjoying the triumphs of significant advances in knowledge of adrenal cortical steroids and evidence of their beneficial clinical effects. Quite to the contrary, there were certain respects in which these two years (in the words of one physician) were among the most "grim" and "frustrating" in the history of the Group. Because procedures like adrenalectomy, hemodialysis, and renal transplant were radical and still largely untried, they were attempted only on patients who were acutely, seriously, and often terminally ill. (Many of these were patients, as one physician put it, "who could very well be dead the next day.") (17-18) Chapter IV\\The Patients of Ward F-Second: Some of Their Problems and Stresses Problems of Incapacity and Inactivity Problems of Isolation Problems of "Submission to Medical ScienceDDDthe Doctors, and the Hospital" The Tests, the Machinery, and the Drugs Problems of Uncertainty Problems of Not Being Able to Get Better Problems of Meaning a social role In so doing, he [the sick person] becomes a patient. the sick role (115-116) Dr. B.: How do you feel about all the tests? Mr. F.: Well, they are necessary for getting over the operation properly, getting nourishment and fortifying the system against infectionDDDBut I don't think anyone likes intravenous. They tolerate it. They know they have to do it, but\\Well, I'll quote what I said to a doctor up there on the ward. I said, "I don't like these because I feel I'm tied up like a dog!" (121) These, then, were the stressful problems of illness which the patients of Ward F-Second shared: incapacity and inactivity; isolation from the well world; submission to teams of physicians, the apparatus of medical science, the routine of a teaching hospital, and the rigorous demands of experiments; uncertainty as to the nature of their diseases and the outcome of the studies in which they participated; incurability; close contact with death; and the problem of why they had fallen ill in the first place\\what did it all mean? (134-135) [Note 6.] This is not to imply that the patients of Ward F-Second were improperly persuaded or forced to participate in research. We already know that the physicians of the Metabolic Group obtained their voluntary consent for any experimental measures they tried. However, as we shall see, the serious, chronic nature of their diseases, along with certain characteristics of the ward community to which they belonged, and the nature of their relationship to the physicians of the Metabolic Group, made many patients feel that they "ought" to consent to experimentation, and others that they "very much wanted to." (136) Chapter V\\How the Patients of Ward F-Second Came to Terms With Their Problems and Stresses Medical Stardom as a Way of Coming to Terms Function of Stardom Medical Expertise and Interest as a Way of Coming to Terms Functions of Medical Expertise and Interest Laughter From the Cubicles: The Nature and Content of Humor on Ward F-Second The Meaning and Functions of the Humor of Ward F-Second Laughing Prayer: Religion on Ward F-Second A Game of Chance Relationship Between Ways of Coming to Terms of Patients and Physicians Disadvantages of Ward F-Second's Ways of Coming to Terms YEiwlނցI@oCIƃTC{[OZpЂ炭Ռ̋ߖЉxciC^[VtgA2006Nj Ramez Naam, More Than Human: embracing the promise of biological enhancement, 2005 ûƂALS̊SȎÖ@͂ȂBBAFꂽÂƂāu][vƂ܂邪ẢʂȂBAŋ߂̓pɂ΁AqÂs΁Aisx点ė]{ɂ邱Ƃł邩ȂB @ZZONAWYEzvLYw̐_oȊwWFt[EXX^CALSƓ̏Ǐ\}EXɁACVlBq(IGF-1)̈qǉBIGF-1͐lԂ̑̓ŐY镨ŁAɋؓ̐ƏC𑣐ipBv(32-33) B. K. Kaspar et al., "Retrograde Viral Delivery of IGF-1 Prolongs Survival in a Mouse ALS Model", Science 301 (August 8, 2003): 839-42. uIGF-1q̕ψٌ^łMGFi@BIhBqjqv u炭ƏdvȂƂBɂƂȂĕʂɋNؓʂؗ͂̌AÂ̑ΏۂɂȂ邱ƂBccNAEBAEG@YƃA[EBE[[o[OƂl̘VNw҂AuTRyjAiؓƂӖjvƂ̂𓱓Ă̌ۂLqBv(35) W. Evans and I. Rosenberg, Biomarkers (Simon & Schuster, 1991) "Sarcopenia: Origins and Clinical Relevance", review, Journal of Nutrition 127, Suppl. 5 (May 1997): 990-91. uI[XgÃGs^ЁvuFZ܂̗Տv(37) uZpIȖʂ猾΁AqÂ̊{IȎ@͂߂ĊȒPBh̐ݔ΂AZp͑wȂǂłKłx̂̂Bv(39) u{ɌʓIȈSVXeJȂ΁A\͑ړIňip\̂邱ƂF߁A̎̎gp@ɂĂSKChC݂ȂĂ͂ȂȂBv(50) uAJ̃AcnC}[a҂͎l܁Zlɂ̂ڂAɎlZZlقǂ́uyxFmQ(Mild Cognitive Impairment. MCI)v҂B͎É\ȏǌQƂFDAɔF߂ĂBccŋ߂̂ƂAFDÁu֘ALQ(Age-Associated Memory Impairment. AAMI)vÉ\Ȏ̈ƂĔF߂B܁ΈȏŁALeXg̐тN̐l̂ȂŉZ܂ł̐ĺAAAMI悵ĂƂ邪AɊYAJlłZZlƂȂBv(58-59) u݁AjR̎gpʂ͂Ȃ̐ŒቺĂ邪AɑւāA苭͂ȔF͑܂ЉIɗeFABNAAJł̓Af[iAtF^~j⃊^iAtF^~Ɏ\tFjf[gjÂقގ̋܂̏Ⳃ܁ZZȏsꂽÂقƂǂ͒ӌ׉ߊQ(Attention Deficit Hyperactivity Disorder. ADHD)̎×pBv(61) u_jtBvuiuvBWvvuiRvV[̎ÖƂďFꂽtX̖v(62) uvUbNvupLVv ulԂ̔]Ɛ_ςقǂ̑傫ȗ́v(67) u\͑Zpׂ͂ĈŵȂ猻Ăv(74) uׂĂ̔Dw͗rh邢͂̂ق̏oOqff󂯂̂]܂Ƃ_v(155) R. A. Harris et al., "Cost Utility of Prenatal Diagnosis and the Risk-Based Threshold", The Lancet 363 (2004): 276-82. uWj[ECɂ͖ҌPccC̓PlfB̃AhoCXɂA𓮂ƍlBJ[\Ɉړ΍ɁAɈړ΍ɁAƂBCr𓮂ƂƁA]ɖߍ܂ꂽdɂA߂̐{̃j[MsbNAbvāA΂ɂRs[^ɂ𖳐œARs[^J[\𓮂Bׂ͋ƂBlԂl邾ŁARs[^Bv(198) Johnny Ray, "Me, Myself, My Implants, My Micro-processors, and I", http://www.sdmagazine.com/documents/sdm0009a/ P. R. Kennedy et al., "Direct Control of a Computer from the Human Central Nervous System", IEEE Transactions on Rehabilitation Engineering 8, no. 2(June 2000): 198-202. M. 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Kroll(1993), PTSD/Borderlines in Therapy: Finding the Balance (Norton) D. Healy (1993), Images of Trauma (Farber & Farber) M. E. 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Hughes et al., 'Drugs for exceptionally rare diseases: do they deserve special status for funding?', Q J Med 2005; 98; 829-836. Introduction orphan disease̒ US: a prevalence of 7 cases per 10,000 population. JP: 2.5 UK: 5 EU͌JxBЂւ̃CZeBB market exclusivity for 10 years, reduction of licensing fees, assistance with marketing applications, direct access to the centralized procedure for marketing authorization, and, in some countries, provision of specific research grants. gpԁEANZXɊւĂ͍ʂɈقȂĂB ex. laronidase (the only treatment for mucopolysaccharidosis type 1 (MPS1)).̓XRbghEI_EgBAEXFjAł̓T|[gĂȂB Special status considerations A key issue around whether public funding should support the provision of ultra-orphan drugs is whether the rarity and gravity of the condition represents a rational basis for applying a different value to health gain obtained by people with that condition. That ultra-orphan drugs are reimbursed at all, illustrates the fact that budget impact, clinical effectiveness and/or equity issues are given precedence over cost-effectiveness in decisions on resource allocation in some countries. The consequence, however, is that the opportunity cost of supporting the use of ultra-orphan drugs necessitates that patients with a more common disease, for which a cost-effective treatment is available, are denied treatment. Methodological issues concerning evidence on effectiveness evidence for safety, efficacy, clinical and cost-effectiveness difficult to obtain good quality comparative effectiveness data for ultra-orphan drugs. 1.ex. A trial of itraconzole for the prevention of severe fungal infection in children and adults with chronic granulomatous disease, for instance, took 10 years to recruit just 39 patients. The FDA granted a licence for 1-carnitine in genetic carnitine deficiency, based on a study of only 16 patients. Lagakos SW. Clinical trials and rare diseases. N Eng J Med 2003; 348:2455-6. iꍇɂtrial͌JRXgƌ邪Ał͂̃RXg͂Ȃ킯łBj 2. clinical diseases is often based on short-term surrogate outcomes rather than long-term effectiveness, and the relationship between the two may not be proven. iނ^ׂ̓RXg-ʂ̕]ɂԂƃGh|CgݒłBj Limited budget impact Given the small number of patients eligible for ultra-orphan drugs, the total cost impact on health services is limited. Equity issues The utilitarian approach to distributive justice A rights-based approach The 'rule of rescue' Options for policy recommendations assigning equity weights risk-sharing and 'no cure, no pay' schemes clinical and pharmacogebetic criteria. ex. Gaucher's disease in Ontario, Canada. funding by research councils Robert D. Truog, "Dying Patients as Research Subjects", The Hastings Center Report; Jan/Feb 2003; 33,1 In this issue of the Report, Rebecca Pentz and colleagues discuss a new frontier for clinical research ethics\\the use of dead and dying patient as research subjects for protocols that cannot ethically be performed on other subjects. Specifically, they propose guidelines that would allow patients who have been diagnosed as brain dead or who are about to undergo a planned withdrawal from mechanical ventilation (with the expectation of rapid and certain death from respiratory failure) to be eligible for certain types of experimentation that offer no benefit to the patient. (3) The procedure developed by Pentz and colleagues employs a two-stage approach. First, patient can be considered as research subjects only if the risks of the research are within an acceptable rangeccIf the first condition is met, then the patients or surrogates are allowed to make a personal choice whether to accept the risks of the research in pursuit of altruistic goals. This two-step approach is very similar to the approach we currently take with living organ donations. Here, too, medicine and society set a threshold for the maximal risk that one individual is allowed to take on behalf of another. (3) These parallel developments in the ethics of organ transplantation and research suggest that ethical norms in the society may be evolving. Whereas the traditional dead-donor rule prevents retrieval of vital organs until after the diagnosis of death, the emerging practices around both living donation and research on dying patients are less restrictive and more nuanced. (3) The provocative proposal described in this article therefore deserves close scrutiny, since it has implications not only for the ethics of research but also for the ethics of organ transplantation and end-of-life care more generally. (3) Rebecca D. Pentz et al., "Revisiting ethical guidelines for research with terminal wean and brain-dead participants", The Hastings Center Report; Jan/Feb 2003; 33, 1. In order to address these challenges, we suggest that trials may include two populations not frequently used in research: brain-dead individuals, whose circulatory and ventilatory systems are being maintained mechanically, and "terminal wean" patients, whose life support equipment or drugs will imminently be withdrawn. In this article, we describe such a clinical trial and propose ethical guidelines for the use of this research population. The advantages of including these populations are several: it avoids giving participants false hope, minimizes the harmful effects on their health and quality of life, and can advance their values and enhance their own and their surrogates' search for meaning in the face of the tragedy of terminal illness, while offering scientific opportunities that are otherwise unavailable. (20-21) The Protocol In early 2000, investigators at The University of Texas M.D. Anderson Cancer Center described an innovative research protocol to the institution's Clinical Ethics Service and inquired about an ethically appropriate pool of research participants. The investigators explained that if peptides\\short sequences of amino acids\\are genetically attached to a simple virus known as a phage, the phage will bind to the vasculature of specific organs depending on the peptides they contain. Further, certain peptides selectively home to the vasculature of tumors, making possible the delivery of targeted cancer therapies. Having demonstrated this homing phenomenon in mice, the investigators sought to validate the feasibility of this approach in humans, with the ultimate goal of developing mechanisms for the targeted delivery of cancer therapies, gene therapies, and imaging agents. (21-22) In our institution, brain-death is exceedingly rare. Considerably more potential participants could be found among cancer patients who are on life support and for whom a terminal wean from mechanical ventilation or vasopressor support is planned. (22) Guidelines for Research Involving Terminal Wean and Brain-Dead Subjects 1. Conditions for the research proposal a. Addresses an important clinical problem b. Has a low possibility of death during the protocol c. Includes only procedures that can be completed within a limited time, defined in advance. d. Is approved by a properly constituted Institutional Review Board. 2. Eligibility requirements a. Terminal wean participants must not be expected to survive the terminal wean. b. Participants must have indicated to the health care team or surrogates that they have end-of-life altruistic goals consistent with such research. c. Candidates for organ donation or autopsy are excluded. d. Informed consent is obtained from next of kin, and when obtaining consent, attention is given to any possibility of death, the time frame for completing the protocol, and the effect on the body. 3. Protocol implementation guidelines a. Investigators are not involved in declaring brain death, and the declaration is unequivocal. Investigators are not involved in the decision to terminal wean. b. Provisions are made for adequate analgesia or anesthesia as indicated. c. Research participants are not resuscitated. d. The dignity and humanity of the body is not violated. e. Any charges for time and resources spent on life support during research procedures are paid by the investigators. (23) Three individuals (two terminal wean patients and one brain-dead subjects) participated in the phage protocol. (24) Anna Mastroianni and Jeffry Kahn, "Shifting views of justice in human subjects research", The Hastings Center Report; May/Jun 2001; 31, 3. Since the early 1990s, however, justice as applied in research ethics has emphasized the need to ensure access to the potential benefits that research has to offer. (21) Further, therer was a sense that the risks and benefits of research were split apart\\the risks were borne by subjects, the benefits accrued to others. (22) From Protection to Access The HIV/AIDS advocacy Women's health groups (cancer) NIH Guidelines on the Inclusion of Women and Minorities as Subjects in Clinical Research, Federal Register 59 (28 March 1994): 14508 Thus an overemphasis on the benefits of research participation can undermine the reality that research inherently carries risk and very often holds no benefits to the subject. 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Deborah A. Stone, The Disabled State (Temple University Press, 1984)

Introduction: Disability in the Welfare State

Thus, this book focuses on disability as an administrative category in the welfare state, a category that entitles its members to particular privileges in the form of social aid and exemptions from certain obligations of citizenship. (4)

Medical certification has become the core administrative mechanism for a variety of redistributive policies. (4)

Many puzzling questions remain.
Why should the expansion of disability programs be such a pervasive phenomenon? ccAre we really to believe that, on balance, life in the 1980s is more disabling than life in the 1930s or even the 1950s?
If disability is a medical phenomenon, why should there be so much variety in the definition of disability in public programs, both from country to country and from program to program within the same country? cc
Why is there a trend toward the medicalization of social problems? cc
And finally, how can we explain the political backlash against the disabled (in the form of wholesale cuts in the disability rolls) when benefits for the handicapped would seem to be a classic "motherhood issue", one that no politician could afford to oppose? What could be lower than picking on a group of people unable to defend themselves? Why is the Reagan administration treating many disabled citizens as cheaters and subjecting them to much the same treatment as that given to AFDC mothers in the seventies? (12)

The answer to these questions is to be found neither in the details of program administration nor in population characteristics, but rather in the underlying concept of disability-based benefit programs. The very notion of disability is fundamental to the architecture of the welfare state; it is something like a keystone that allows the other supporting structures of the welfare system and, in some sense, the economy at large to remain in place. At the same time, the notion of disability is highly problematic. The problem, in brief, is that we are asking the concept of disability to perform a function it cannot possibly perform. We ask it to resolve the issue of distributive justice. (12-13)

The critical distributive problem for all societies is how to decide when people are so poorly off that the normal rules of distribution should be suspended and some form of social aid\\be it from kin, neighbors, church, or state\\should take over. In the modern societies with which we are familiar, this problem appears, crudely drawn, as a conflict between work and need as the basis of claims on resources. The essence of modern welfare state's approach has been to establish categories of need in order to determine who should be allowed to make need-based claims, and to provide for people in these categories out of public monies administered by state agencies. Thus childhood, old age, sickness, and disability became legally recognized as conditions entitling individuals to social aid. (13)

1 The Distributive Dilemma

The tension between the two systems based on work and need is the fundamental distributive dilemma. To resolve it, society must develop a set of rules to determine the boundaries of the two systems, rules that specify who is subject to each distributive principle and what is to be distributed within each system. There is no natural boundary between the two systems, no inherent definition of what constitutes need or who "belongs" in one system or the other. (17)

Disability is a formal administrative category that determines the rights and privileges of a large number of people. (27)

5 The Pressures for Expansion

Now, in the 1960s, 1970s, and 1980s, the fundamental economic conditions have changed; many welfare states are faced with a surplus rather than a shortage of labor. Rates of unemployment are relatively high, and the economies are incapable of accommodating the entire working age population in the labor force. Yet an ideology of work-based distribution persists and perpetuates a public ethic that "everyone should work".
In such situation, when ideology mandates that everyone should work but society cannot provide employment for large segments of its population, the dilemma can be reconciled by defining a higher proportion of the population as disabled. Because disability is the most flexible of the categories of the need-based system, it is the one most available for use in this fashion. An expansion of the definition of disability can reduce the pressures of unemployed workers on the work-based distributive system and at the same time preserve the legitimacy of the work ideology. (168)

6 The Political Dynamic of Disability Expansion

Who Benefits from a Flexible Disability Category?

The conventional analysis of disability expansion sees the program recipient as the prime beneficiary and presumably the instigator of program expansion. But there is a strong case that indeed much more powerful organizational interests benefit from flexibility and even expansion of the category: the state, employers, legislators, disability program agencies, and rehabilitation agencies all benefit from having a disability category they can manipulate. Thus, reforms aimed at curbing the use of programs by individuals would hardly seem to be an effective solution to the disability expansion problem. One has to question whether anyone other than budget officers and taxpayers\\two notably diffuse constituencies\\has any real interest in restraining the growth of the disability phenomenon. If disability expansion is really problem, one is hard put to say whose problem it is. (186)

Linda Ganzini and Susan Block, "Editorials: Physician-assisted death\\a last resort?", The New England Journal of Medicine, May 23, 2002. Vol.346, Iss.21.

During the past decade, patients with the uncommon disease amyotrophic lateral sclerosis (ALS) have had a prominent role in the debate about physician-assisted suicide and voluntary active euthanasia. In Canada and Great Britain, patients with ALS have challenged legal bans on physician-assisted death. A widely viewed videotape of a patient in the Netherlands choosing euthanasia generated considerable controversy. In the United States, millions watched Jack Kevorkian euthanize Thomas Youk, a patient with ALS, on the CBS news program 60 Minutes.

Physician-assisted death may be an acceptable option of last resort for a very small number of terminal ill patients. At this point, we do not know what rates of physician-assisted death are appropriate. High rates would suggest that the procedure is not just being used as a humane approach to eliminating intractable suffering at the request of the patient. Rather, high rates could reflect deficiencies in the competence of health care practitioners, lack of access to suitable services, devaluation of the dying, or even pressures from others to end life prematurely. Judging from our clinical and research experience with patients with ALS and cancer, the rates of physician-assisted death that Veldink et al. report\\10 percent among patients with cancer and 20 percent among patients with ALS\\are unacceptably high.

Jan H Veldink et al., "Euthanasia and physician-assisted suicide among patients with amyotrophic lateral sclerosis in the Netherlands", The New England Journal of Medicine, May 23, 2002. Vol.346, Iss. 21.

Death is usually caused by respiratory failure unless ventilatory support is provided. Approximately 4 percent of patients agree to undergo a tracheostomy for long-term mechanical ventilation6.
[Reference]
6 Albert SM et al., "Prospective study of palliative care in ALS: choice, timing, outcomes", J Neuro Sci, 1999;169: 108-13.

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Erich Auerbach, Literatursprache und Publikum in der lateinischen Spaetantike und im Mittelalter (Francke, 1958)

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BEECHER, Henry K., et al., 1969, "Procedures for the Appropriate Management of Patients Who May Have Supportive Measures Withdrawn," The Journal of the American Medical Association 209 (3, July 21).
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WEIR, Robert F., 1989, Abating Treatment With Critically Ill Patients: Ethical and Legal Limits to the Medical Prolongation of Life, Oxford University Press.
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JENNET, Brian, and PLUM, Fred, 1972, "Persistent vegetative state after brain damage. A syndrome in search of a name," Lancet 1 (7753, Apr 1).
JENNET, Brian, 2002, The Vegetative State: Medical Facts, Ethical and Legal Dilemmas, Cambridge University Press.
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LEBIT, Lynn E., 1992, "Compelled Medical Procedures Involving Minors and Incompetents and Misapplication of the Substituted Judgment Doctrine," Journal of Law and Health 7: 107-130.

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Cf., FILENE, Peter C., 1998, In the Arms of Others: A Cultural History of the Right-to-Die in America, Ivan R. Dee. P. 33.
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HYLAND, William F., and BAIME, David S., 1976, " In Re Quinlan: A Synthesis of Law and Medical Technology," Rutgers Camden Law Journal 8: 37-64.
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COLLESTER, Donald G., Jr., 1977, "Death, Dying and the Law: A Prosecutorial View of the Quinlan Case," Rutgers Law Review 30: 304-328.
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ANNAS, George J., 1990, "Mapping the human genome and the meaning of monster mythology," Emory Law Journal 39 (3): 629-64.

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Cf.,WEIR, Robert F., 1989, Abating Treatment With Critically Ill Patients: Ethical and Legal Limits to the Medical Prolongation of Life, Oxford University Press. Pp. 79-80.
FLORIDA DISTRICT COURT OF APPEAL (Fourth District), Satz v. Permutter, in (Contemporary, 256-8).
BEAUCHAMP, Tom L., and WALTERS, LeRoy (eds.), 1989, Contemporary Issues in Bioethics, Third Edition, Wadsworth Publishing Company.

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Tom L. Beauchamp, "The Right to Die as the Triumph of Autonomy", Journal of Medicine and Philosophy, 31: 643-654, 2006.

The right to die has been as central and as enduring a topic as any to emerge since the term "bioethics" was coined. Physician involvement in hastening the death of a patient\\now often pejoratively styled "physician-assisted suicide"\\is one dimension of a much larger struggle over patients' rights and physician control. (643)

Some scholars have argued that developments in physician involvement in hastening death are part of a much older set of concerns about euthanasia that constitutes a continuous history over the last one hundred years or so(1). In this account, the right to die in its most prominent forms today derives from the same values, objectives, and movements found in the early and middle decades of the twentieth century, down to the present time. A competing thesis\\and one I think far more promising\\is that the history of the right to die since roughly 1972 is more discontinuous than continuous with earlier discussion of the role of physicians in helping patients or surrogates hasten death. In re Quinlan (1976) and its aftermath, in my judgment, pushed far beyond previous issues and social movements, giving rise to new ethical ideas and legal doctrines only dimly anticipated in the past. Here begins a trail of very different ideas about the right to die and about decision-making rights for seriously ill or injured patients(2). If I am right, the 1970s and early 1980s brought such widespread change that the worn-out proposals in the "euthanasia movement" were replaced by a different set of issues, perspectives, and proponents.
Some writers in bioethics seem to believe that the right-to-die movement has today been stalled by the joint emergence of fears that vulnerable patients will be abused, and hopes of improved palliative care at the end of life. To the contrary, I believe that there has been a steadily escalating momentum in the direction of strengthening in the right to die since the 1970s. ccThe right to die, much like the right to give an informed consent, is an impressive example of the triumph of autonomy in bioethics. (643-644)

(1)
Ian Dowbiggin (2003), A Merciful End: The Euthanasia Movement in Modern America (Oxford University Press)
(2)
Alan Meisel (1996), "The "right to die": A case study in American lawmaking", European Journal of Health Law, 3, 49-74.
Marcia Angell (1993), "The legacy of Karen Ann Quinlan", Trends in Health Care, Law & Ethics, 8, 17-19.

Initially the right to die was framed more as a right to refuse life-prolonging "treatment" than as a right to die. (645)

The Oregon law
The cutting edge of the history of the right to die shifted, with passage of this law, from refusals of medical technologies to requests for aid in hastening death. (648)
Tersely put, this is where cases such as Quinlan, Cruzan, and Glucksberg brought us. (648)

Gostin, L. O. (1997), "Deciding life and death in the courtroom: From Quinlan to Cruzan, Glucksberg, and Vacco\\A brief history and analysis of constitutional protection of the "Right to Die", Journal of the American Medical Association, 278, 1523-1528.

Among the most important developments in bioethics in the last thirty years is the growing body of literature recommending that we abandon the distinction between "killing" and "letting die" altogether, on grounds that it is a misleading distinction, can be a wholly irrelevant distinction, and is not a reliable way to distinguish impermissible from permissible acts(18). The killing/letting die distinction suggests that the autonomous choice of a patient (a refusal or request) is not the relevant consideration in deciding whether to comply with a patient's preference; it suggests that only the type of action (a killing or a letting die) is important. (649)

(18)
Orentlicer, D. (1988), "The alleged distinction between euthanasia and the withdrawal of life-sustaining treatment: Conceptually incoherent and impossible to maintain", University of Illinois Law Review, 837-859.
Beauchamp, T. L. (ed), Intending Death, (Prentice Hall).
Malm, H. M., (1989), "Killing, letting die, and simple conflicts", Philosophy and Public Affairs, 18, 238-258.

Many in bioethics seem now to be coming to the acceptance of two important conclusions. First, they would like to see the law preserve a range of options for patients, including last-resort remedies such as refusal of nutrition and hydration and ingestion of a fatal medication. This is the logical extension of a primary commitment to patient autonomy. Second, many are coming to the view that physicians who provide assistance in hastening death are adhering to a legitimate interpretation of the physician's traditional commitment to the patient: to care for and meet the needs and preferences of the patient in all stages of the patient's life. They note that the activities a physician undertakes in providing assistance in hastening death are the same as those carried out by a physician who oversees a withdrawal of treatment. Under many circumstances in medicine a request by patients for aid authorizes assistance by a physician. For example, a request for help in reducing pain warrants interventions to meet the request. Why is a favorable response by a physician to a request for assistance in facilitating death by hastening it through fatal medication different from a favorable response to requests for assistance in facilitating death by easing it through removal of life-prolonging technology or use of coma-inducing medications? The two acts of physician assistance appear to be morally equivalent as long as there are no other differences in the cases. That is, if the disease is relevantly similar, the request by the patient is relevantly similar, etc., then responding to a request to provide the means to hasten death seems morally equivalent to responding to a request to ease death by withdrawing treatment, sedating to coma, and the like. In effect, these are all ways to hasten death. (651)

Herbert Hendin, "Selling Death and Dignity", Hastings Center Report 25, no.3 (1995): 19-23.

Death on Request (Dutch television, 1994): Cees van Wendel, ALS.
New York Times Magazine (1993): Louise, an unnamed, degenerative neurological disease.

In the selling of assisted suicide and euthanasia words like "empowerment" and "dignity" are associated only with the choice for dying. But who is being empowered?......The patient, who may have said she wants to die in the hope of receiving emotional reassurance that all around her want to live, may find that like Louise she has set in motion a process whose momentum she cannot control.

By rushing to "normalize" euthanasia as a medical option along with accepting or refusing treatment, we are inevitably laying the groundwork for a culture that will not only turn euthanasia into a "cure" for depression but may prove to exert a coercion to die on patients when they are most vulnerable. Death ought to be hard to sell.

Leon R. Kass, "Is There a Right to Die?", Hastings Center Report (January-February 1993): 34-43.

And, on both philosophical and legal grounds, I am inclined to believe that there can be so such thing as a right to die\\that the notion is groundless and perhaps even logically incoherent.

A right, whether legal or moral, is not identical to a need or a desire or an interest or a capacity.

This analysis of current usage shows why one might be properly confused about the meaning of the term "right to die". In public discourse today, it merges all the aforementioned meanings: right to refuse treatment even if, or so that, death may occur; right to be killed or to become dead; right to control one's own dying; right to die with dignity; right to assistance in death.

Equally puzzling is the question, Against whom or what is a right to die being asserted?

Efear of prolongation of dying due to medical intervention; hence, a right to refuse treatment or hospitalization, even if death occurs as a result;
Efear of living too long, without fatal illness to carry one off, hence, a right to assisted suicide;
Efear of the degradations of senility and dependence; hence, a right to death with dignity;
Efear of loss of control; hence, a right to choose the time and manner of one's death.

I would confess a strong temptation to remove myself from life to spare my children the anguish of years of attending my demented self and the horrible likelihood that they will come, hatefully to themselves, to resent my continued existence. Such reasons in favor of death might even lead me to think I had a duty to die\\they do not, however, establish for me any right to become dead.

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