``Requested death'': a new social movement

Fran McInerney*

Anne O'Byrne Centre, Tasmanian School of Nursing, University of Tasmania, 287-291 Charles Street, Launceston, Tasmania 7250,

Australia

Abstract

This paper addresses current developments in the right-to-die arena. While discussion of this area hastraditionally been the province of disciplines other than sociology, including philosophy and bioethics, this paper

o�ers an alternative framework from which to consider the progressive interest in control and choice at life's endwhich has developed this century, principally in the Western world. Taking a largely socio-historical approach, thispaper argues that issues such as euthanasia and physician-assisted suicide can be seen as forming part of an

international social movement, which is dubbed `the requested death movement'.The paper traces the chronology of the movement, placing its framing activities, the emergence of individual

activists and events and its progressive mobilization, within a consideration of so-called `new' social movements,

which have emerged since the 1960s. These are principally concerned with resisting state control of cultural matters,while reclaiming matters of identity, privacy and individual corporeality, which it is argued are at the core of therequested death movement. It is posited that this consideration can contribute to understandings of both the

contemporary social organization of death and dying, and social movement theory more generally. # 1999 ElsevierScience Ltd. All rights reserved.

Keywords: Euthanasia; Physician-assisted suicide; Requested death; Social movements

Introduction

The passage of the Rights of the Terminally Ill Act

(RTI Act) 1996 through the Northern Territory of

Australia's parliament on the 25th of May 1995 and its

proclamation on the 1st of July 1996, marked a most

radical development in the history of contemporary

doctor±patient relationships. For the ®rst time in the

world, a terminally ill person was legally authorized to

request that a physician either assist him or her to end

their life by prescribing a lethal substance, or bring

about his or her death by administering such a sub-

stance, and a physician was legally authorized to com-

ply.

This paper shall argue that the RTI Act 1996 can be

seen as both a logical and signi®cant outcome of a

Western social movement. This movement, which I

have called the `requested death movement', is princi-

pally concerned with the legalization of euthanasia and

physician-assisted suicide. It developed from the latter

part of the nineteenth century and has persisted into

the twentieth, achieving a conspicuous momentum

over the last three decades. This paper will explore the

emergence of the movement via a consideration of gen-

eral characteristics of social movements, with a par-

ticular focus on the so-called `new' social movements

which have emerged since the 1960s. Their emphasis

Social Science & Medicine 50 (2000) 137±154

0277-9536/99/$ - see front matter # 1999 Elsevier Science Ltd. All rights reserved.

PII: S0277-9536(99 )00273-7

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* Corresponding author. Fax: +61-6-324-4007.

E-mail address: fran.mcinerney@utas.edu.au (F.

McInerney)

on identity, individuality and control of one's bodywill be seen to parallel with developments in the right-

to-die arena. The requested death movement in itsvarying intensities, and through various media, actorsand planned and unplanned events will be examined

and be seen to have mobilized with progressive inten-sity and success over this century.Discussion around the end of life has long been the

province of religion, philosophy, law, medicine andmore recently bioethics. However, how a society or-ganizes around the dyings and deaths of its members is

an intensely social concern. Johnson (1985, p. 55) con-tends that ``a culture's large scale shifts in perspectivecan be traced in its shifting perspective of death'',while Aries (1981, p. xvi) elaborates that there is ``a re-

lationship between attitudes towards death in theirmost general and common expression and . . .the senseof individual destiny or of the collective destiny of the

race''. This paper o�ers an alternative, sociologicalframework from which to consider requested death,one which largely eschews the perspectives which have

traditionally dominated this area. Such an examinationhas the potential to contribute to our understandingsof both the contemporary social organization of death

and dying, and social movement theory generally.

Social movements (SMs)

Blumer (1994, p. 60) observes that SMs arise from

``a condition of unrest, and derive their motivepower . . . from dissatisfaction with the current form oflife, and . . . from wishes and hopes for a new scheme

or system of living . . . ''. In the requested death move-ment, a new scheme or system of dying is proposed,speci®cally one allowing the sick, especially thoseexperiencing `pain and su�ering' (Giesen, 1995, p.

202), ``to end their lives, or to have them ended, ifthey so choose'' (Williams, 1989, p. 200). The move-ment promotes the legalization of actions where ``the

death of a human being is brought about on purposeas part of the medical care being given to him''(Keown, 1995, p. 272) at that person's request, the

speci®c actions generally referred to being either `phys-ician-assisted suicide' or `physician-performed euthana-sia' (Miller and Fletcher, 1994).In order to achieve change, a movement must gain

substantial popular acceptance within the society ofwhich it is part. The SM aims ``to mobilize popularsupport for insurgent action'' (Klandermans, 1988, p.

174), which entails convincing people that the goals ofthe movement ``are congruent with . . . [their] . . . inter-ests, values, and beliefs'' (Hunt et al., 1994, p. 191)

and thus both have relevance and o�er bene®ts tothem. To this end it purports to provide ``answer[s] tothe distress, wishes and hopes of the people'' (Blumer,

1994, p. 73). Hunt et al. (1994, p. 191) observe that``for people to take action to overcome a collectively

perceived problem or `injustice', they must develop aset of compelling reasons for doing so''. It is thebusiness of an emerging social movement to develop

and disseminate the notion that a situation is unjust,and both can and should be remedied (Lo¯and, 1996,p. 187). Such an awareness of injustice further gives

rise to ``new conceptions of . . . morality and immoral-ity, or the real and the ®ctitious . . . [and] . . .new con-structions of rights, . . .procedures, . . .norms, . . . [and]

beliefs . . . '' (Gostin, 1993, p. 61).The appearance of new constructions of reality cre-

ates a ``state of choice'', whereby ``what may havebeen unthinkable is now thinkable and possible''

(Gus®eld, 1994, p. 63). At the time of their initialassertion at least, such ``unthinkables'' are su�cientlymarginal to the dominant social view as to be regarded

as (Lo¯and, 1996, p. 3):

improper, implausible, immoral, false, threatening,corrupting, seditious, treasonous, blasphemous,

degenerate, despicable Ð or in some other mannernot respectable or otherwise meriting serious con-sideration.

The possibility of new norms involving physicians'deliberately bringing about patients' deaths at thosepatients' invitation, as ultimately articulated within the

requested death movement and contained within theNorthern Territory RTI legislation, at the leastrequires that one overturn the ``prohibition against

killing . . .embedded within the Hippocratic oath''(Gomez, 1991, p. 14). While many of the tenets of thisoath Ð such as surgery and abortion Ð have been

ignored, and the document itself dismissed for its ``dat-edness'' (Anderson and Caddell, 1993, p. 105), it wasnonetheless the dominant in¯uence in medicine forsome centuries (Emanuel, 1994a, p. 1891). The pro-

spect of physicians killing their patients as an acceptedpart of their professional duties has only recentlybecome ``respectable''; only in the 1990s has any so-

ciety agreed to legally sanction such activity.

Competing views

A number of commentators have noted broad links

between requested death and social movements,although none of them has explored this link at anydepth. Williams (1989, p. 200) has noted the emergence

over ``some decades'' in the English speaking world of``rationalist pressure groups interested in remouldingattitudes to dying'', and MacDonald (1998, p. 73) has

identi®ed requested death activists in Oregon as ``lea-ders of social movement organizations''. Kellehear(1998, p. 288) looks to explain the emergence of phys-

F. McInerney / Social Science & Medicine 50 (2000) 137±154138

ician-assisted suicide by situating it within the so-called

``New Public Health Movement''. While his work doesnot take up the tensions in issues such as how we canexperience health in the moment of death, nor address

how the heavily physician-mediated, exclusively phar-maco-technological and importantly curative (in termsof `curing' the dying process) form of physician-

assisted suicide to which he refers can be reconciledwith a health promotion philosophy, his proposition

contains a larger oversight for the purposes of thispaper.Kellehear's (1998) argument relies heavily on the ex-

perience of Janet Mills, the second person to utilize theprovisions of the Northern Territory's RTI Act. He

depicts her as an assertive, controlling individual initi-ating a request for physician-assisted suicide; ``a ®neindividual example of attitudes and actions which, in

principle, are perfectly aligned with the values of theNew Public Health'' (p. 294). However, as the follow-ing discussion will demonstrate, all successful social

movements have at their core similarly motivated indi-viduals, be they demanding nuclear disarmament,

abortion, environmental protection, sexual freedom orany other issue constructed as in need of redress.While they may have similar origins and general objec-

tives, to subsume one movement within another on thebasis of such similarities is to risk ignoring the speci®cproblems they address, and the various methods used

to encourage mobilization.Taking a diametrically opposite perspective to the

above authors, Glick (1992, p. 53) asserts that ``theright to die was not produced by a mass social move-ment''. He principally bases his claim on both the rela-

tive recency of the issue's coming to prominence in``the mass social agenda'', and the absence of ``a neatand logical ordering of early ideas and

actions . . . [leading] . . . inevitably to Quinlan andbeyond''. He portrays the history of the issue as having

``several separate paths, some more heavily trod thanothers, but all having rough boundaries, detours, andunanticipated intersections'', rather than the ``single

straight line'' of social movements (Glick, 1992, p. 53).Glick's evaluation sits in some contrast with Blumer's1951 (1994, p. 62) description of the women's move-

ment in the ®rst half of the twentieth century as ``epi-sodic in its career, with very scattered manifestations

of activity''. He continues `` . . . its progress [was] veryuneven with setbacks, reverses, and frequent retreadingof the same ground'', closely echoing the depiction

used by Glick to invalidate `the right to die' as a socialmovement.

Glick's conclusions appear to be based on a some-what limited appreciation of the complex character ofSMs, predicated on a not uncommon ``error of false

unity'' (Melucci, 1988, p. 19) in relation to their for-mation. Such errors are frequently situated in under-

standings drawn from the so-called ``old'' socialmovements of earlier this century, speci®cally the

working-class and party political movements, withtheir more ``hierarchical, centralized organization''(Johnston et al., 1994, p. 9) which, particularly with

hindsight, made them easier to identify. By contrast totheir ``old'' counterparts, contemporary or ``new'' SMsare more di�cult to characterize (Johnston et al.,

1994, p. 7), frequently exhibiting elements such as amembership drawn from a broad class base, ¯uctuat-ing alliances, and an ``anti-bureaucratic, egalitarian,

and communal'' structure (Plotke, 1995, p. 130).

New social movements (NSMs)

In addition to their general lack of readily identi®-able structure, NSMs are concerned with somewhat

di�erent issues from their predecessors. Rather thanthe preoccupation with the ``economic-industrial sys-tem'' that characterized older movements (Melucci,

1994, p. 109), they tend away from ``accept[ing] thepremises of a society based on economic growth''(Klandermans and Tarrow, 1988, p. 7). Melucci (1994,p. 109) contends that the con¯icts with which contem-

porary movements concern themselves have shifted ``tothe cultural sphere . . . [to] . . . focus on personal identity,the time and space of life, and the motivation and

codes of daily behavior . . . '' NSMs are more overtlyinvolved with ``personal and intimate aspects ofhuman life'' including concerns such as ``what we eat,

wear, and enjoy; how we make love, cope with per-sonal problems, or plan or shun careers'' (Johnston etal., 1994, p. 8), and indeed in this instance, how we

die. The requested death movement is, like other con-temporary social movements, concerned with rede®n-ing both the individual's identity and their relationshipwith and control of their body (Johnston et al., 1994,

p. 8; Klandermans and Tarrow, 1988, p. 7) as itapproaches death.NSMs which ``extend into arenas of daily life''

(Johnston et al., 1994, p. 8) are said to have arisen inresponse to an ``unprecedented state penetration intovarious . . .spheres'' (McAdam 1988, p. 132) that have

been ``traditionally regarded as private'' (Melucci,1994, p. 102). Touraine (1985, p. 774) observes thatNSMs' preoccupation with ``cultural and especiallyethical problems'' derives from con¯ict over the con-

trol of ``the production of symbolic goods, that is, ofinformation and images, of culture itself''. He(Touraine, 1985, p. 778) contends that because contem-

porary society is ``able to transform our body, oursexuality, our mental life . . . the ®eld of social move-ments extends itself to all aspects of social and cultural

life''. Turner (1986, p. 91) suggests that NSMs high-light ``the whole question of the domination of naturenot only by capitalism but by modern industrial so-

F. McInerney / Social Science & Medicine 50 (2000) 137±154 139

ciety generally''; certainly state control of medical de-cisions at life's end and the domination of the human

body by medicine more generally are, rhetorically atleast, centrally at issue in the requested death move-ment.

Several authors (Taylor, 1989, p. 763; Eyerman andJamison, 1991; McAdam, 1994, p. 42) argue that newsocial movements have their ideological origins in the

American civil rights movement, drawing understand-ings of being ``victims of discrimination'' and makingassociated demands for expanded rights under the law

from that movement's framing of reality (McAdam,1994, p. 41). Turner (1994, p. 87) had suggested in1969 that the ``injustice'' de®ned by the era that gaverise to ``new social movements'' Ð the 1960s Ð was

``the lack of a sense of personal dignity or a clearsense of identity''; new social movements have beensaid to arise ``in defense of identity'' as individuals

struggle to ``name'' themselves (Johnston et al., 1994,p. 10) and ®nd a sense of ``personal worth'' and indivi-duality (Turner, 1994, p. 87). This ideological under-

pinning thus links movements as seemingly diverse asthe women's, gay rights, abortion, alternative health,peace, environmental Ð and I argue the requested

death Ð movements (Touraine, 1985, p. 773;McAdam, 1988, p. 132, 1994, p. 42; Johnston et al.,1994, p. 8), as they struggle over ```cultural rights'. . . the right to one's own lifestyle, the right to be

di�erent, the protection of the individual againstentirely new kinds of risks'' (Kriesi, 1988, p. 358).

Social movement organizations (SMOs)

Social movement organizations are ``associations ofpersons'' (Lo¯and, 1996, p. 2) who identify with theideals of the movement, see themselves as a part of it,

and typically campaign on its behalf (Marwell andOliver, 1993). They are one of the major constitutiveelements of a social movement. Unlike the broader cat-

egory of social movement, where it is often di�cult toisolate its precise origin, ``SMOs can commonly betraced to speci®c days, places, and persons'' (Lo¯and,

1996, p. 176).According to resource mobilization theorists of

social movement formation (Oberschall, 1973;McCarthy and Zald, 1987, 1977; McAdam, 1982;

Jenkins, 1983; Taylor, 1989; Tarrow, 1994) ``politicalopportunities . . .are [a] major factor in the rise anddecline of movements'' (Taylor, 1989, p. 761).

Emanuel (1994a, p. 1892) and others (Lauter andMeyer, 1984, p. 91) identify the rise of Darwinism andindividualism in the latter half of the nineteenth cen-

tury as providing just such an opportunity for theearly requested death movement. Such a climateallowed for a frank discussion of ending the lives of

``incurables'' and ``hideously deformed or idiotic chil-

dren'' that might otherwise have been condemned asrepugnant (Emanuel, 1994b, p. 796). A Bill introducedinto the Ohio legislature in 1906 to legalize such ac-

tivity was poorly timed however. It coincided with anemerging critique of social Darwinism (Hofstandter,1955 in Emanuel, 1994b, p. 796) and was soundly

defeated, after which the issue of requested deathlapsed from the public agenda.

The 1930s was the next important decade for therequested death movement. Emanuel (1994a, p. 1892)suggests that it was the onset of the depression, with

its contraction of social support for the vulnerable,that provided the political opportunity for this revival.

Certainly there was a rash of parents' mercy killings oftheir ``idiot'' and ``imbecile'' children reported duringthis period (Triche and Triche, 1975) Ð perhaps as-

sociated with the economic crisis of the time Ð which,while not about requested death per se, nonethelesslent further impetus to the movement. The decade saw

the ®rst `Voluntary Euthanasia Society' founded inLondon in 1935 (VESS, 1998) by a group of ``British

doctors, Protestant theologians, teachers, . . . prominentintellectuals and writers'' (Glick, 1992, p. 54). ThisSMO was followed by the `American Euthanasia

Society' which modeled itself on its British counter-part, and was established in New York in 1938(ERGO!, 1998). These societies were principally con-

cerned with legalization of voluntary euthanasia forthe terminally ill, with unsuccessful Bills to this e�ect

introduced during the late 1930s in both countries(Glick, 1992, pp. 54±55).While Melucci (1994, p. 127) has identi®ed that

``contemporary movements display a two-pole patternof functioning'', these being ``latency'' and ``mobiliz-ation'', Taylor (1989, p. 761) has re®ned the former

concept, coining the term ``abeyance'' to describe ``aholding process by which movements sustain them-

selves in nonreceptive political environments and pro-vide continuity from one stage of mobilization toanother''. The nascent British and American euthana-

sia SMOs su�ered a signi®cant strategic blow to theirpotential to mobilize public opinion with the onset ofWorld War Two (WWII) and the holocaust (Emanuel,

1994a, p. 1892), which brought the notion of euthana-sia (however much the German experience may not

have been about `requested death' as such) into disre-pute. Following this time the requested death move-ment momentum dissipated, with for example the

Euthanasia Society of America abandoning its e�ortsto bring about legislative support for active euthanasiain 1952 (Glick, 1992, p. 57), and in an important sym-

bolic and strategic move, jettisoning its overt associ-ation with euthanasia in renaming itself `The Society

for the Right to Die' in 1974 (ERGO!, 1998).Indeed, the hiatus following WWII and the ``heavy

F. McInerney / Social Science & Medicine 50 (2000) 137±154140

baggage'' of Nazism (Glick, 1992p. 58) was such thatthe ®rst international meeting of right-to-die groups

was not held until 1976, when six groups met in Tokyo(ERGO!, 1998). By 1980 however, at the formation ofthe `World Federation of Right to Die Societies' in

Oxford, 27 groups from 18 nations were represented(ERGO!, 1998). These organizations have as their prin-ciple objective the legalization of euthanasia on an in-

ternational scale. In the interim they are supportive ofpeople choosing whatever manner of death is availableto them, including suicide (Humphry, 1992, p. 147).

The surge of the requested death movement in the latetwentieth century has been such that in 1998 theWorld Federation of Right to Die Societies claims 33groups in 20 nations (ERGO!, 1998).

Emerging from Abeyance

The event or events that give rise to ``movement mo-bilization'' or groups of insurgents' ``coming out into

the open'' (Melucci, 1994, p. 127) to challenge the sta-tus quo may be ``more or less accidental and so givethe impression that movements develop [or reemerge]spontaneously'' (Kriesi, 1988, p. 366); the reality how-

ever, is much more complex. During the periodbetween the end of WWII and 1976, a number ofevents had taken place that contributed to the issue of

requested death overcoming its holocaust associationsand ®nding a more sympathetic climate. In terms of``political opportunities'' (Taylor, 1989, p. 761), it is

interesting to note Emanuel's observation that, particu-larly the latter period during which these events tookplace, coincided with a peculiarly receptive political

milieu in the West. The ascendance of Reaganism andThatcherism, while socially conservative regimes, para-doxically reintroduced some elements previouslyencountered during the rise of Darwinism and the

onset of the depression which were conducive to thereemergence of the requested death movement, namely``raw individualism, unfettered capitalistic competition

for survival . . . and curtailment of social `safety net'programs for the poor, old and sick'' (Emanuel,1994b, p. 800).

One of the major developments that promoted therequested death movement's progressive mobilizationwas the post-WWII escalation of biomedicine.Biomedical technology and hospitalization for all man-

ner of health care advanced apace following WWII(Parker, 1998, p. xxvii), creating hitherto unheard ofpossibilities for sustaining life. So radical were these

advances that new de®nitions of life and death had tobe invented, with the concept of ``brain death'' beingdeveloped in 1968 (Glick, 1992, p. 23). The very con-

cept of death had thus been revolutionized; the histor-ian Aries (1981, p. 585) commenting that by virtue ofadvanced biomedicine, ``the time of death can be

lengthened to suit the doctor''. This newly protractedcourse of dying gave rise to individuals' experiencing

``problems of lingering death'' (Beisser, 1991, p. 142).The medicalization of death further lead to its privati-zation, institutionalization, and removal from social

life (Blauner, 1966; Sudnow, 1967; Aries, 1974, 1981;Fulton, 1977), which arguably reduced the individual'sability to respond to and cope with their own and

others' dying and death.Deliberately inducing death as a response to such

medical developments is not the only concept to have

inspired interest however, hospice being another socialmovement response that emerged in the West from thelate 1960s (Seibold, 1992). In terms of the reemergenceof the requested death movement, hospice was a comp-

lementary in¯uence; another voice in the growing cri-tique of medicine's omniscience in relation to death,and of the situation for many individuals at life's end.

It further introduced the notion of choice in mode Ðif not timing Ð of dying. In this respect, it was bothillustrative of and contributing to the more receptive

terrain on which euthanasia SMOs were also mobiliz-ing.

Lone proponents of the movement

In addition to SMOs, Lo¯and (1996, p. 11) identi®esanother ``main social organizational form [that] has

continuity and is organized but is only the smallest ofscale''. He calls this the ``lone proponent, who perhapshas a loose band of supporters and sympathizers''.

While often not connected to a particular SMO, suchindividuals nonetheless share many of the movements'ideological frames, and act in ways supportive ofmovement mobilization. Some remain outside of the

organized movement, others join an SMO, work along-side such a body or establish new social movement or-ganizations. The requested death movement has had a

number of such proponents working to further itsobjectives; consciously and e�ectively acting in supportof mainstream SMOs. These include Derek Humphry

and Dr. Timothy Quill in the US, and MarshallPerron and Dr. Philip Nitschke in Australia, howeverDr. Jack Kevorkian in the US has arguably been themost in¯uential.

Kevorkian participated in his ®rst act of physicianassisted suicide in May 1990, when he assisted 54-year-old Janet Adkins, suspected of having early

Alzheimer's disease, to die in Michigan, US. Heinserted into her vein a line connected to substances Ðprincipally potassium chloride Ð injectable by a ma-

chine, which she then activated in order to cause herown death. The technology which enabled whatKevorkian (1991) calls ``medicide'' to take place is his

F. McInerney / Social Science & Medicine 50 (2000) 137±154 141

own invention, which he has dubbed the ``thanatron''

or ``mercitron''. After Adkin's death Kevorkian wasstruck o� the medical register. Unable to purchase pot-assium chloride because of the loss of his license to

practice, he expanded his apparatus to include a devicethat administers carbon monoxide via a face mask(Lessenberry, 1994). Reportedly 130 individuals had

been assisted to die by Kevorkian to November 1998(DeathNET 1999). His dramatic framing of events, as

taken up and disseminated by the media, ``makesalternative modes of behavior accessible to wide audi-ences'' (Gus®eld, 1994, p. 74) and broadens the scope

of the movement in the process.Kevorkian's activities have been allowed to develop

because Michigan, unlike many US states, has had``no statute criminalizing assisted suicide'' (Smith,1993, p. 505). While Kevorkian has frequently been

charged with murder or manslaughter for his activities,he has until recently had e�ective immunity from con-viction. Although he has connected the person to the

`mercitron', it is they who have initiated the mechan-ism to bring about death Ð that is, either the ¯ow of

intravenous potassium or inhaled carbon monoxide Ðand thus Kevorkian has been judged as only `assisting'.He has successfully exploited the ``political opportu-

nities'' so important to movement development(Taylor, 1989, p. 761) that are available in that state.

In response to both the publicity attendant onKevorkian, and the problematic nature of his assist-ance, particularly in relation to the depressed

(Daugherty, 1996), the non-terminally ill (Betzold,1996), those with an uncertain diagnosis (McKee,1996) or in the 1993 case of Mr. Gale, the strong sus-

picion that the person had in fact changed their mindabout wanting to proceed (Kaplan, 1997, p. 169),

Michigan has recently passed a law makingKevorkian's actions illegal, taking e�ect fromSeptember 1st 1998 (ERGO!, 1998). Several other US

states have also responded to Kevorkian's activities bymaking assisted suicide illegal, including Illinois,Indiana and Tennessee (NYSTF, 1994, p. 56).

In March 1999, Kevorkian was sentenced to 10±25years' imprisonment after being found guilty of sec-

ond-degree murder following his admitting to eutha-nazing one Thomas Youk, an individual with theincurable and progressively degenerative condition

amyotrophic lateral sclerosis (ALS, also known as LouGehrig's disease) (DeathNET, 1999). In his most dra-

matic challenge to Michigan law to date, Kevorkianvideo-taped himself giving the man the lethal injection,in deliberate contrast to his previous `assisting' role.

He subsequently made the tape available to theAmerican CBS television network's ``60 Minutes'' toensure its widespread publicity. CBS aired the video in

November 1998. Following his conviction, and in afurther theatrical gesture, Kevorkian vowed to embark

on a hunger strike, a course of action designed as he

put it, to ``raise . . . [the issue of euthanasia] . . . to the

level where it is ®nally decided'' (DeathNET, 1999).

Whether or not the issue is resolved, Kevorkian

appears determined to maintain his public campaign

for the legalization of requested death in whatever

manner is available to him, indeed it would appear, to

the point of martyrdom.

Although Kevorkian can be seen as a relatively

rogue operator in the requested death movement, he

has nonetheless been a powerful force in its develop-

ment, albeit as what Benford and Hunt (1995, p. 96)

refer to as an ``overinvolved'' player of the movement.

His activities have directly and openly challenged exist-

ing laws in a way not generally characteristic of

requested death SMOs, and which further, have threa-

tened ``to discredit movement attempts to sustain a

uni®ed image'' (Benford and Hunt, 1995, p. 96). In

recognition of this, and perhaps in an attempt to ``neu-

tralize [his] discreditable actions'' (Benford and Hunt,

1995, p. 97), the Hemlock Society has dubbed him

``the loose cannon of the euthanasia movement''

(Humphry, 1992, p. 40), spoken against his plans for

America-wide suicide centers (Humphry, 1992, p. 148)

and critiqued his practice of campsite and hotel room

deaths as ``hardly death with dignity'' (Humphry,

1992, p. 142). Notwithstanding the above however,

Hemlock has privately worked in concert with

Kevorkian, referring individuals to him for suicide as-

sistance (Kastenbaum, 1995, p. 175).

While Kevorkian's dramatic and `outrageous' activi-

ties are potentially discrediting to the wider requested

death movement, its construction of him may have

worked in a contrary manner; by condemning him and

keeping their association relatively covert, the move-

ment as represented by organizations such as Hemlock

can appear comparatively conservative. In an example

of this paradoxical e�ect, Kevorkian's activities as a

lone proponent inspired the emergence of another

requested death SMO, `Merian's Friends'. Forming

out of a sense of ``deep anger'' that Merian Frederick,

for whom the organization is named, was unable to

access physician-assisted suicide from her ``family

physician'' but was ``forced'' to resort to Kevorkian

(Merian's Friends, 1998), this SMO recently placed an

unsuccessful initiative on the Michigan ballot designed

to reverse that State's new prohibition against assisted

suicide (IAETF, 1998). Kevorkian's essentially anon-

ymous assistance of individuals with a variety of term-

inal and non-terminal conditions has thus been the

impetus for another SMO to call for legalization of

more `personal' assistance speci®cally for those diag-

nosed with a terminal illness, and made such calls

more modest by comparison with his practices.

F. McInerney / Social Science & Medicine 50 (2000) 137±154142

`Victim' proponents

Utilizing a dramaturgical framework to depict social

movement dynamics, Benford and Hunt (1995, p. 89)

observe that movement protagonists or ``supporting

cast members are frequently recruited from audiences''.

In order to achieve any degree of `success', a social

movement's depiction of an issue and the objectives

designed to redress it must resonate on some level with

the experiences of its audience (Snow and Benford,

1988, p. 210); while not essential for its survival,

attracting large numbers of supporters or members

speaks to a movement's relevance.

The requested death movement depicts the plight of

su�ering individuals who seek direct medical assistance

to die as its major issue requiring redress. These indi-

viduals are cast as ``victims'' of an impersonal medico-

legal system which subjects the dying person to ``a

form of medically sancti®ed torture'' (Chapman, 1995,

p.41) involving such elements as unrelieved pain and

su�ering and unwanted and invasive treatment.

Victims are very important to social movements;

indeed ``without victims there would be no social

movement dramas'' (Benford and Hunt, 1995, p. 87).

Further to this, McAdam (1994, p.46) notes that it is

important for a social movement to be seen to ``actua-

lize . . . the kind of social arrangements deemed prefer-

able to those the group is opposing''. The presence

within the requested death movement of both individ-

uals willing to assist another to die, and crucially of

those desiring such assistance, is thus central to the

movement's credibility and relevance.

In his discussion of funerals as an occasion for

movement mobilization, Tarrow (1994, p. 39) observes

that owing to ``death's moment . . . [being] . . .brief'', it is

``seldom the source of a sustained social movement''.

Due to their being near death, the active engagement

in the requested death movement of individuals such

as Elizabeth Bouvia in the US (Lanham, 1993), John

McEwan in Australia (Tonti-Filippini, 1992), `Nancy

B' and Sue Rodriguez in Canada (Ogden, 1994), those

who have died under RTI Act in Australia and

Oregon's Death with Dignity Act in the US and those

assisted to die by Kevorkian and Humphry, was

necessarily short-term. However, one of this move-

ment's central arguments is that the `moments' leading

up to death, while perhaps temporally brief, are phe-

nomenologically unbearably protracted. This argu-

ment, combined with the cumulative impact of the

deaths of its `victims' and their sustained identity

beyond life, whether they be ``immortalized'' in

`Merian's Friends', `Jean's Way' (Humphry and

Wickett, 1978), `It's Over, Debbie' (Anonymous,

1988), or otherwise `present' in the popular media and

elsewhere, both mitigates the brevity of the moment of

death and facilitates the continuity of the movementover time and its relevance to the still living.

Galvanizing events

McAdam (1994, p. 41) refers to Walsh's 1981 con-

cept of ``suddenly imposed grievances'' as an importantelement in framing perceptions of and responses to anissue. These grievances incorporate ``those dramatic,

highly publicized, and generally unexpected events Ðhuman-made disasters, major court decisions, o�cialviolence Ð that increase public awareness of andopposition to previously accepted societal conditions''

(McAdam, 1994, p. 40). While not necessarily deliber-ately functioning in this way, since the 1920s at least(Humphry, 1992, p. 127) there have been literally doz-

ens of cases of assisted suicide and mercy killing ofterminally ill or severely disabled close friends orfamily members that have served as such galvanizing

events.

Mercy killings

Those involved in mercy killing have generally actedindependently of each other and frequently for inten-sely personal reasons, but all have served, with the

enthusiastic assistance of the media, to ``keep publicinterest high in active euthanasia'' (Glick, 1992, p. 82).The courts have generally been lenient to individuals

carrying out mercy killing or the assisted suicide of aloved one, and, as with lone proponents, the vast ma-jority of those coming to trial have received acquittals

or suspended sentences (Triche and Triche, 1975, pp.37±61; Lanham, 1993, pp. 174±175. Rare cases such asthose of Roswell Gilbert, who served ®ve years in amaximum security prison following the mercy killing

of his wife, are held up by requested death advocatesas unjust, and as further justi®cation for legalizedeuthanasia (Humphry, 1992, p. 124).

Presumably by virtue of the combined in¯uence oftheir exposure to su�ering and their access to potent,often lethal substances, physicians too have not infre-

quently been involved in killing their patients or assist-ing them to suicide. These cases have been subject tointense media notice, focussed as it is on ``brutal orunusual crimes'' (Glick, 1992, p. 82). What they also

demonstrate is both the di�culty in establishing causa-tion in matters of suspected physician homicide andalso the general leniency with which physicians charged

with such an o�ence are treated by the courts. Indeed,Gostin's (1993, p. 97) search of US records found noevidence of any health care professional being con-

victed of ``causing, inducing or assisting'' in the deathof a patient in that nation Ð a pattern evident else-where. As occasional public performers in the

F. McInerney / Social Science & Medicine 50 (2000) 137±154 143

requested death movement, physicians are fascinatingto the media, objects of sympathy to the public, and

handled with conspicuous generosity at law.

Dr. Gertruida Postma

Two years before In re Quinlan (to be discussedbelow), a key event had taken place in the NorthernHemisphere, this time in The Netherlands. While not

as attractive to a world-wide English speaking audi-ence as the protracted dying of a young Americanwoman in the prime of life, in some respects theLeeuwarden case was of greater signi®cance to the

requested death movement than the experiences of theQuinlans. In large part as a result of Postma's actions(Gomez 1991, p. 13), euthanasia now takes place in an

Ð if not precisely lawful Ð essentially legally sanc-tioned manner on an ongoing basis in TheNetherlands. The knowledge of this situation is wide-

spread, making the `hitherto unthinkable' not onlythinkable but a reality, at least in that country.In 1971, Dr. Gertruida Postma had been charged

under Article 293 of the Dutch Penal Code with killing

her mother. Article 293 states (Gomez 1991, p. 19):

He who robs another of life at his express and

serious wish is punished with a prison sentence ofat most 12 years or a ®ne of the ®fth category.

While Leeuwarden District Court found that Dr.

Postma's actions had been unlawful, and aimed atdirectly killing her mother, the statutory sentence wasnot imposed. On the basis of her ``purity of motive'',

she was given a Ð largely symbolic Ð sentence of oneweek's imprisonment, to be suspended if after 1 yearshe had engaged in no other criminal act (Gomez1991, p. 31).

What the above and other related cases overwhel-mingly demonstrate is both the di�culty in establishingcausation in matters of suspected physician homicide,

and also the general leniency with which physicianscharged with such an o�ence are treated by the courts.Indeed, Gostin's (1993, p. 97) search of US records

found no evidence of any health care professionalbeing convicted of ``causing, inducing or assisting'' inthe death of a patient in that nation; a pattern evidentelsewhere. As occasional public performers in the

requested death movement, physicians are again fasci-nating to the media, objects of sympathy to the publicand handled with conspicuous generosity at law.

Klandermans (1988, p. 177) observes that ``much ofthe mobilization potential of a movement comes fromthe unplanned formation of consensus.

Moreover . . .agents other than the organization cancontribute to the consensus''. Either by accident or de-sign, physicians engaged in mercy killing function as

consensus-forming agents for the movement. Theyserve to keep the issue in the public eye and highlight

the presence of dissent within the elite of medicine.Such internal dissent has been identi®ed as creating aclimate ``conducive to insurgency'' (Klandermans,

1988, p. 174) by commentators on social movementmobilization (Klandermans, 1988; Tarrow, 1988).Another group of individuals has also functioned as

a mobilizing force in the requested death movement,albeit largely accidentally. The movement has had sev-eral ``medical celebrities'' (Hilgartner and Bosk, 1988,

p. 64) seeking requested death or having it sought forthem, including Karen Quinlan, Elizabeth Bouvia, andNancy Cruzan in the North America, John McEwanin Australia, `Nancy B' and Sue Rodriguez in Canada

and Tony Bland in the UK. However, perhaps thesingle greatest ®llip to the cause of requested deathcame in the form of the 1976 New Jersey Supreme

Court's ruling in the matter of Karen Ann Quinlan. Inthat year, 22-year-old Karen Quinlan's parents success-fully petitioned the New Jersey Supreme Court to dis-

connect their daughter's respirator following herentering a persistent vegetative state (PVS).

In re Quinlan

It had been anticipated that Karen Quinlan would

not be able to breathe independently of the mechanicalrespirator, so in that respect her death was anticipatedfollowing its withdrawal. Her death was not sought

however, as indicated by her being ``slowly and care-fully weaned'' from the respirator (Hill and Shirley,1992, p. 101), a practice which maximizes the chances

for independent survival in such circumstances. Whenshe did continue to breathe on her own, other life-sus-taining e�orts, particularly feeding, were continued.The suggestion that her intravenous line might be

removed (a far more unambiguous action in terms ofresulting in death) prompted her father to reply ``Ohno, that is her nourishment'' (Callahan, 1983, p. 22);

hardly the response of someone actively seeking thedeath of his child. While noteworthy for a number ofreasons, including allowing substituted judgement in

such a decision, the case was crucially about the modeof Karen's living and dying; the respirator was intoler-able to the Quinlans, but the gastrostomy tube wasnot. Karen was sustained in this manner Ð that is,

receiving `arti®cial nutrition' Ð until her death 9 yearslater (Lanham, 1993, p. 66), further suggesting the lackof commitment of either her family or the courts to

mandating her `right to die'.Despite the equivocal nature of the motivations of

those involved, the circumstances of In re Quinlan

have been held up as a ``watershed'' in the right-to-diecampaign (Berger 1990, p. 144; Humphry 1992, p.165). Cranford (1993, p. 64) notes the ``consciousness

F. McInerney / Social Science & Medicine 50 (2000) 137±154144

raising'' e�ects of this decision and that in cases suchas that of Nancy Cruzan, while Dickens (1993, p. 84)

contends that this in¯uence has extended far beyondthe shores of the US. Tierney (1997, p. 52) hasobserved that ``physician-assisted suicide has . . .recently

surfaced as a highly contested issue in the realms ofjuridico-political discourse''. The Quinlan decision wasthe beginning of this contestation in the West (Glick,

1992, p. 146); additionally she made an impact on ourcollective psyche, precisely what a ``suddenly imposedgrievance'' is argued to do.

Cases such as Quinlan, Cruzan, Bouvia and so onfunction as a `gift' of sorts to the requested deathsocial movement, removing the need for it to stagedeliberately Ð as do other SMOs Ð what Turner

(1986, p. 91) has termed ``episodic socio-dramas'' inorder to gain public attention (Gus®eld, 1994, p. 74).While there have been many other cases of a

`requested death' nature embodying ultimate humandilemmas, those mentioned above have become causescelebre; particularly attractive to the media and captur-

ing the imagination of the community. This hasoccurred not only because of any substantive ethico-legal issues they might deal with, but also because they

have primarily involved young people, supposedly atthe peak of their physical and social potential, `cutdown' in their prime, and `trapped inside' their non-functioning bodies. They thus readily ®t the mold of

``innocent victim'' so important to the formation ofsocial movements (Hunt et al. 1994, p. 193) and res-onate with the popular conception, advanced by many

other social movements, that the individual shouldhave ultimate control over their own body. The very`unnaturalness' of the situations of such young people,

with its associated pathos and drama, has been at leastas signi®cant to the overall development of therequested death movement as has a general societalintrigue with death and dying, or the more thoughtful

deliberations of philosophers and legislators.

Opinion polls

If a social movement is to be successful in achievingsocial change, it is desirable that it develop a publicopinion in favor of its particular agenda (Blumer, 1995

[1951], p. 75). The uncommitted or ``bystander public''is an important focus of a social movement, and withthis in mind, publicizing the results of public opinion

polls is a speci®c method used in movement mobiliz-ation (Lo¯and, 1996, p. 53). Various requested deathSMOs not only publicize results, but also regularly

commission such polls (Humphry, 1992, p. 135;ERGO!, 1997). Such activity keeps the issue in thepublic eye, and this alone reinforces its possible realiz-

ation. However, polls serve a number of other import-

ant functions.While Pollard (1996, p. 82) asserts that opinion polls

``are used to test change, or suspected change, in the

political environment'', polls also, in de®ning a prop-osition with which people choose to agree or disagree,

have a further normative function. This function is fa-cilitated by their presentation in the mass media, itselfcontended by Gamson (1989, p. 360) to be ``the insti-

tutional mechanism through which normalization ismost e�ectively disseminated''. Hunt et al. (1994, p.191) cite the importance of ``diagnostic and prognostic

framing'' in generating social movement consensus andmobilization, where the former term identi®es the issue

``in need of amelioration'' and the latter outlines the``plan for redress'' of the problem identi®ed. Polls per-form both these functions, and thus directly support

social movements by articulating their issues andobjectives. Turner and Killian (1987, p. 198) observethat to fail to conform to the de®nitions Ð the cogni-

tive framework Ð o�ered by pollsters, is to be ``pun-ished by exclusion from discussion''. Thus the very act

of engaging with a poll question Ð be that as a polledindividual or as one reading the reports of opinionpolls in the media or elsewhere Ð requires that that

question become ``thinkable'', which as noted earlier isa central prerequisite for a successful social movement.Asher (1988, p. 152) cites Ginsberg's 1986 conten-

tion that polling works against movement mobilizationin that it changes ``public opinion from a behavior,

such as letter writing or demonstrating, to an attitude,as revealed in a verbal response to a poll question''.However Ð and this is particularly relevant for a

movement such as `requested death' that does notcommonly engage in large scale public demonstrationsÐ what this argument overlooks is that to engage with

a poll, and respond to its framing of events, is itself aform of action. In recognition of this, Turner and

Killian (1987, p. 197) note that public opinion pollingand its reporting operate ``like . . . [a] . . .di�use crowd'',serving to ``link people and groups who are not in

direct interaction''.It has been argued (Asher, 1988, p. 152) that polling

takes little or no account of the intensity with whichindividuals hold a particular opinion. Nonetheless, pollresults ``acquire substance and gravity'' (Nieburg,

1984, p. 3) and create an opportunity for ``focus[ing]of attention as a basis for organizing the public''(Turner and Killian, 1987, p. 197). SMOs can thus

plausibly Ð rightly or wrongly Ð claim both broadengagement with and support for its issues on the

basis of poll results. For the requested death move-ment, which does not mobilize its members in tra-ditionally ``public'' ways such as street marches and

protests, polls have become a major strategy, servingas ``public displays of unitary will'' (Tilly, 1985, p.

F. McInerney / Social Science & Medicine 50 (2000) 137±154 145

736). Calls for the legalization of death on request arefrequently justi®ed on the basis of community demand

(Orentlicher, 1996, p. 666), as the disembodied `public'of opinion polls are cast as `virtual activists' of themovement.

Public views

Glick (1992, p. 84) and Blendon et al. (1992, p.

2659) note that in the 40 years between 1947 and 1990,US public support for active, voluntary, physician-administered euthanasia for those su�ering from term-inal illness who request death increased from two-

thirds opposed to two-thirds in favor. Support hassince risen to 75% in 1996 (ERGO!, 1998), re¯ectingthe requested death's emergence from abeyance after

WWII. Australian ®gures show a similar trend, with a®gure of less than 50% in favor in 1962 steadilyincreasing to three-quarters in 1996 (Hassan, 1996, p.

535). Canadian support too has increased, from 45%in 1968 to 76% in 1995 (Robinson, 1998). British®gures were ®rst obtained in 1937, with polling show-ing 69% in favor (re¯ecting the importance of that

decade for the movement), falling to 55% in 1950 (cor-responding to the period of abeyance the movementexperienced post-WWII), and then rising again to 69%

in 1976 (Williams, 1989, p. 204) and 75% in 1989(Helme, 1992, p. 71).The understandings and de®nitions of those polled

has not been decisively determined, however. EvenTimothy Quill, an advocate of physician-assistedsuicide, notes that (Quill et al., 1998, p. 553):

. . .public opinion polls are probably confoundedbecause the public may not adequately understandeither the e�cacy of palliative care or their right to

refuse unwanted treatment. Similarly, the desires ofhealthy persons for control over the circumstancesof their deaths may bear little relation to the desires

and needs of terminally ill patients. In our view,public opinion alone is not a rational basis for thelegalization of physician-assisted suicide.

Dickens (1993, p. 80) rejects the notion that the gen-eral populace might be ignorant in matters of hospiceand other medical care. He suggests that such reason-ing ``discounts the extent to which viewers of movies

and particularly television programs gain understand-ing of and familiarity with medical decision dilem-mas''. Indeed, as Fulton and Markusen (1979, p. 10)

have observed, owing to the removal of death from theprivate to the public sphere, ``in American societytoday our attitudes toward death are likely to come

from the mass media rather than from a direct con-frontation with death''. The experiences of critically-and terminally-ill individuals and their families as rep-

resented within television and other media, may indeedserve to educate the general public, and provide them

with an accurate, if vicarious, experience of issues atlife's end. However, contrary to Dickens' (1993, p. 80)contention that for example, popular television series

``transmit reality in an adequately representative way'',Kelner and Bourgeault's (1993, p. 757) assertion thatthere is a ``growing sophistication'' of the community

owing to ``the strong in¯uence of the media in popu-larizing and disseminating medical information'', andRisley's (1992, p. 366) suggestion that such media

merely ``re¯ect'' prevailing attitudes and realities,Windschuttle (1988, p. 292) argues that the ``relation[of media portrayals] to the overall reality of death inour society is tenuous''. This latter argument had been

made some time earlier by Gerbner (1980 in Fox,1981, p. 54), and has more recently been supported byCrayford et al.'s (1997, p. 1652) study, which found

characters in British television series, in contrast todemographic trends, to be depicted as dying bothyounger and from ``a variety of obscure and often vio-

lent causes''. Thus popular media vehicles work in theinterests of the requested death movement by their ten-dency to frame death in dramatic, albeit not necess-

arily accurate, ways.

Studies of professional attitudes and practices

One might reasonably assume that the understand-ings of health workers are more informed than those

of the general populace, and that surveying these indi-viduals might provide a more reliable estimate of thisgroup's position in relation to euthanasia. Certainly,

there has been no shortage of attitudinal studies of avariety of health workers. As in opinion polling, SMOactivists are not uncommonly involved in conductingsuch studies, with for example, Kuhse a past President

of both the Victorian Voluntary Euthanasia Societyand the World Federation of Right to Die Societies,and Baume Patron of the New South Wales Voluntary

Euthanasia Society. In a frequently cited Australianpiece, Kuhse and Singer (1988) found 60% of medicalpractitioners responded ``yes'' to the question ``Do you

think it is sometimes right for a doctor to take activesteps to bring about the death of a patient who hasrequested the doctor to do this?'', a ®nding supportedin the replication study of Baume and O'Malley

(1994). Stevens and Hassan (1994) found 45% in favorof a similar proposition in their study of SouthAustralian physicians. The surveys on which these

®ndings are based have some considerable methodo-logical problems however, common to surveys of com-plex issues such as euthanasia.

The above surveys contain an early question whichreads ``In the course of your medical practice, has apatient ever asked you to hasten his or her death

F. McInerney / Social Science & Medicine 50 (2000) 137±154146

(whether by withdrawing treatment or by taking active

steps to hasten death)?'' While Stevens and Hassan

(1994) assert that ``no confusion should exist'' because

``the meaning was implicit in the juxtaposition of the

term [`active treatment'] with the phrase `withdrawal of

treatment'``, this question could well be argued to

equate treatment withdrawal and ``active steps'', and

further to link them as actions designed to ``hasten

death'', e�ectively rendering subsequent survey ques-

tions regarding euthanasia and intention equivocal. As

Emanuel (1998, p. 664) contends, ``logically, practi-

cally, and ethically, declining unwanted intervention is

di�erent from demanding any wanted intervention''.

Such survey design which ignores these distinctions

supports Pollard's (1996, p. 83) contention that polls

on euthanasia, even of professional groups, may func-

tion as ``distractors'', and of questionable utility. As

the understandings of those surveyed are not assessed,

the possibility is left open that among other things,

de®nitions of euthanasia may vary.

The passage of the Medical Treatment (Enduring

Power of Attorney) Act 1988 in Victoria Australia,

which placed on statute the o�ence of ``medical tres-

pass'', prompted one of the earliest studies of physician

experiences with requested death (Kuhse and Singer,

1988). Forty percent of respondents reported having

been requested to hasten death, of whom 29% claimed

to have taken ``active steps'' to bring such death about

(623, 624). Baume and O'Malley's (1994, pp. 140, 142)

replication study generated ®gures of 46 and 28% for

these respective questions. A number of other studies

have been undertaken to ascertain physician involve-

ment in acceding to their patients' requests for death.

Back et al. (1996, p. 923±924) found that 26% of

Washington State physicians had received a request for

euthanasia or assisted suicide in their careers, with

24% of these being granted. Meier et al. (1998, p.

1195) discovered 29% of US physicians had been

asked to hasten death, with 21% complying. Surveys

assessing requested death practices would seem to suf-

fer from similar design ¯aws as those addressing atti-

tudes however; Quill (1993, p. 130) observing that

``[d]ata about the frequency of physician-assisted death

are fraught with imprecisely worded questions that can

be variably interpreted . . . '' Meier (1994, p. 20) con-

curs, concluding that such data are problematic:

. . .because of di�erent study designs, including vari-

able wording and de®nition of questions, geo-

graphic locations, year of conduct, and conduct by

advocacy organizations vs more objective sources.

Further . . .the questionable validity of the

data . . .and the lack of questions on certain key

areas . . . indicate a scarcity of the type of data

needed to inform debate on physician aid in

dying . . .

In spite of such concerns, the above and other ®nd-ings are regularly claimed, by social movement organ-

izations and others, as ``evidence'' of practitioneractions, their desirability and their morality. Forexample, the ®ndings of Kuhse and Singer (1988) and

Baume and O'Malley (1994) have been cited as ``over-whelming evidence of participation by Australiandoctors in active euthanasia'' (Otlowski 1995, p. 43)

and prompted calls for legal review. Proponents of therequested death movement contend that such surveysprovide a clear picture of health professionals' regular

practice of euthanasia and assisted suicide, whichshould become available to all. Such studies however,as Nieburg (1984, p. 1) notes, turn complex issues``into numbers . . .which are regarded as a special

truth''. This `special truth' can then be used to con-struct reality in a way supportive of the social move-ment agenda.

Measures of success

Gus®eld (1994, p. 70 asserts that success for socialmovements is determined ``not only by victory ordefeat in legislative, bargaining or legal arenas but also

in how the movement has changed the rules that areadmissible in public arenas''. As noted, the requesteddeath movement's ultimate aim is the legalization ofrequested death, speci®cally physician-assisted suicide

and euthanasia. While the institutional responses to bediscussed below could at best be described as uneven,containing many setbacks and outright rejections,

nonetheless the presence on such national agendas ofmovement issues serves to maintain movement momen-tum and collective potential.

Plotke (1995, p. 134) notes that new social move-ments, owing to their `` . . .elaboration of apoliticalconceptions of autonomy and identity; . . . [their] e�orts

to place new movements beyond equality and welfare;and in the sharp opposition posed between culturaland political-economic issues'', are in some respectsapolitical. However, as noted above, NSMs arise at

least in part in response to state penetration into for-merly private spheres (Touraine, 1985; Turner, 1986;McAdam, 1988; Melucci, 1994). They therefore cannot

a�ord to dismiss the political, as they frequently ®ndtheir grievances enmeshed in such instances of statecontrol. Plotke (1995, p. 134) acknowledges this,

asserting that:

Movements and interest groups are political Ð con-cerned with shaping social relations Ð at the level

of the state and elsewhere. They politicize pre-viously uncontested relations, or repoliticize pre-viously settled relations.

F. McInerney / Social Science & Medicine 50 (2000) 137±154 147

Gus®eld (1994, p. 66) observes that ``the institutionallevel of a movement is found in the e�orts to change

the rules and procedures of organizations and insti-tutions'', while Mueller (1994, p. 238) notes that move-ments become visible ``when they confront the state''.

Gus®eld (1994, p. 69) further contends that ``in onesense, a social movement exists when members of a so-ciety share the recognition that speci®c social rules are

no longer taken for granted''. The requested deathmovement has achieved progressive visibility over thelast two decades, a visibility nowhere more evident

than in parliamentary and legislative responses.

The Remmelink inquiry

As noted above, euthanasia, while still o�cially ille-gal, is nonetheless sanctioned in Holland. The 1973

Postma decision gave rise to general guidelines, whichwere built on in the Rotterdam decision of 1981 andthe Alkmaar decision in 1982±1984 (Gomez 1991, pp.

32±39), involving euthanasia by a non-physician andphysician respectively. In 1984, the Royal NetherlandsAssociation for the Promotion of Medicine (KNMG)

produced its own guidelines for euthanasia (Lagerwey1988; Gomez 1991, p. 40) which included that(Lagerwey 1988, p. 431±433; Gomez 1991, p. 41):

. the request be the patient's and be voluntary;

. the request be informed;

. the request be consistent and stable;

. there be ``persistent, unbearable and hopeless su�er-ing''; and that

. the physician consult with ``at least one colleagueabout the request''.

In 1990±1991 Professor Jan Remmelink, the thenattorney general of the Dutch Supreme Court, chaireda governmental committee which commissioned Paul

van der Maas, Professor of Public Health and SocialMedicine at the Erasmus University, Rotterdam(Keown, 1996, p. 177) and others to undertake a

nationwide study into euthanasia and other ``medicalpractices related to the ending of life'' (van der Maaset al., 1996, p. 1699). The results of this commission

are known as the Remmelink Report. Despite a ®ndingof 1000 cases Ð or 0.8% of all deaths Ð of individ-uals euthanized without their request (van der Maas etal., 1996, p. 1700) and a noti®cation of euthanasia rate

of only 18% (van der Wal et al., 1996, p. 1710) Ðboth in direct contravention of the guidelines Ð theCommittee determined that the practice of euthanasia

was ``careful'', and categorized such cases as ``care forthe dying'' (Jochemsen 1994, p. 212; Keown 1996, p.180). A second nationwide study enabling some com-

parison was made in 1995±1996 (van der Maas et al.,1996, p. 1699). This showed the ®gure for non-volun-tary euthanasia to have fallen slightly, to 0.7% of all

deaths in 1995 (van der Maas et al., 1996, p. 1700),while noti®cations had increased to 41% (van der Wal

et al., 1996, p. 1710). These ®ndings have been used byboth those supporting legalization of requested death(Kuhse 1996) and those opposed (Jochemsen 1994;

Keown 1996). What they do demonstrate is that theNetherlands as a nation is clearly sympathetic to theframing of the requested death movement; to all

intents and purposes, euthanasia is legal there.

Bills, bills, bills . . .

Attempts to introduce legislation designed to legalizeeuthanasia and assisted suicide are not new, with the

®rst attempt taking place in Ohio in 1906 (Emanuel,1994b, p. 796). As noted, among the ®rst actions ofthe early British and American euthanasia societies

was to introduce such euthanasia Bills into their re-spective parliaments in the late 1930s (Glick, 1992, pp.54±55; Emanuel, 1994b, pp. 796±797). Owing to the

abeyance period following WWII, more than 30 yearselapsed before the next e�orts were made, in 1967 inCalifornia (Glick, 1992, pp. 104±105) and in Britain in1969 (Emanuel, 1994b, p. 797). A further unsuccessful

voluntary euthanasia Bill failed in the Idaho legislaturein 1969 (ERGO!, 1998). The 1990s have seen no fewerthan 10 legislative attempts across the US, with the

movement showing no signs of abating. Britain hashad a further ®ve bills supporting assisted suiciderejected by Parliament, the most recent in 1997

(ERGO!, 1998).Australia has seen considerable interest in legislating

for voluntary euthanasia during the 1990s. The

Australian Capital Territory's Legislative Assemblyhas been the focus of much of this activity, with anindependent member, Michael Moore, unsuccessfullyputting forward no fewer than three such Bills since

1993 (Moore, 1997, p. 1). In the state of New SouthWales a euthanasia Bill lapsed in 1996 (Moore, 1997,p. 1), while the state of South Australia saw the

Voluntary Euthanasia (Referendum) Bill 1996 and theVoluntary Euthanasia Bill 1996 Ð this latter allowingfor advance directives for euthanasia in the event of

loss of consciousness or competence (Cordner andEttershank, 1996) Ð lapse in 1997, with a Bill referredto committee in 1998 (SAVES, 1998). The VictorianState government has examined the Northern

Territory's RTI Act 1996, however it has so far madeno legislative moves (Cordner and Ettershank, 1996).While interest in legalized euthanasia is primarily

one of the Western world, the Philippines has alsorecently considered a Bill to render some requesteddeaths lawful, however the precise nature of the acts

being considered are unclear (Wallerstein, 1997, p.1641). Further, Colombia voted to legalize euthanasiain May 1997, however constitutional appeals seem

F. McInerney / Social Science & Medicine 50 (2000) 137±154148

likely to prevent its implementation for the time being(Ogilvie, 1997, p. 1849).

Washington and California ballots

The 1990s has been particularly active in the US and

elsewhere in terms of proposed legislation, and hasseen perhaps the most concerted political campaigningby a number of requested death SMOs. In 1988 in

California one such SMO, Americans Against HumanSu�ering, unsuccessfully attempted to raise su�cientsignatures to place an initiative on that State's Ballotthat would legalize euthanasia and physician-assisted

suicide (Quill, 1993, p. 151). Within 3 years, further in-itiatives were more successful, at least in terms ofobtaining enough signatures to reach a public vote.

These ballots, again designed to legalize physician-assisted suicide and euthanasia (NYSTF, 1994, p. 3),were voted on in referenda in Washington and

California in November 1991 and November 1992, re-spectively. Both were heavily ®nanced and promotedby another SMO, the Hemlock Society; it portraysitself as ``the nucleus and catalyst'' for the initiatives

(Humphry, 1992, p. 41). The California proposal,Proposition 161, was placed on the State ballot by thenewly-renamed SMO, Americans for Death with

Dignity, which had previously been Americans AgainstHuman Su�ering (ERGO!, 1998). Dr Timothy Quillalso took to the hustings to support the Washington

proposal, Initiative 119 (Humphry, 1992, p. 42), main-taining his role as a movement activist.Both the Washington and California initiatives were

defeated by a margin of 54 to 46 percent, in some con-trast to the ®gures regularly obtained in opinionpolling.Emanuel (1994a, p. 1898)) notes this discre-pancy, and remarks that:

[the] con¯ict between polling data and ballot resultsmakes it unclear precisely how people are thinking

about euthanasia. Is their favorable response toeuthanasia in a poll genuine? Or does it re¯ect con-cerns about death that really are not addressed bylegalizing euthanasia? Are the respondents confused

by the terms and questions being asked?

Humphry (1992, pp. 40±41) attempts to explain theWashington defeat by suggesting that the campaigners'

failure to use words such as ``suicide'' and ``euthana-sia'', preferring the term ``aid-in-dying'', was toovague, particularly as the former terms were used

``with relish'' by the media and other commentators.He further suggests that the Bill was painted ``with abroad brush'' that failed to include adequate safe-

guards, as these were to be ``hammered out . . .after vic-tory''. Quill (1993, p. 153) submits that oppositionfrom national religious organizations, and Kevorkian's

assisting two women to suicide in the week before thevote were additional factors that damaged the Bill's

prospects. Presumably there were other reasons for thefailure of the California Ballot, however a dramaticnew development occurred with the next Ballot

attempt, Measure 16 in Oregon.

Oregon Death with Dignity (DwD) Act

The Oregon Senate Bill 1141 was introduced in1991, sponsored by the Hemlock Society (ERGO!,1998). It was designed to enable voluntary euthanasiafor those with less than six months to live

(CSSSCEAS, 1995, Appendix P), however it ``died'' inthe committee stages of the Oregon Legislature(ERGO!, 1998). In 1993 a draft of `Measure 16', which

was to become the Oregon DwD Act, was written byCheryl Smith, former legal advisor to the HemlockSociety and at that time working with the SMO

`Oregon Right to Die' (Marker and Smith, 1996, p. 4).This draft was to allow for both euthanasia and phys-ician-assisted suicide. In 1994 a revised `Measure 16',drawn up with the assistance of Barbara Coombs Lee,

head of the SMO `Compassion in Dying' and againheavily sponsored and supported by the HemlockSociety, which has its international headquarters in

this State, was ®led by yet another closely relatedSMO, ERGO! (its President is Hemlock's founderDerek Humphry). The Bill (Measure 16) to be placed

on the 1994 ballot was thus the product of the collab-oration of a number of SMOs, who were mobilizing ina highly collective fashion.

Unlike Bill 1141, its ®rst incarnation, and itsWashington and California predecessors, whichallowed speci®cally for euthanasia and physician-assisted suicide, in its ®nal form the Oregon DwD Act

allows for an attending physician to comply with a``written request for medication to end one's life in ahumane and digni®ed manner'' (Oregon DwD Act

1994, s.2). While such a phrase appears synonymouswith physician-assisted suicide, the Act later speci®es(Oregon DwD Act 1994, s.3.14, my emphasis):

Nothing in this Act shall be construed to authorizea physician or any other person to end a patient'slife by lethal injection, mercy killing or active eutha-

nasia. Actions taken in accordance with this Act shallnot, for any purpose, constitute suicide, assistedsuicide, mercy killing or homicide, under the law.

Section 4.01(1) of the legislation further allows forthe physician to be ``present when a quali®ed patienttakes the prescribed medication to end his or her life

in a humane and digni®ed manner''. That a physicianis enabled under the Act to provide a lethal prescrip-tion and then be present when the patient takes the

F. McInerney / Social Science & Medicine 50 (2000) 137±154 149

substance, but that this not be construed as legalizedassisted suicide seems confusing, to say the least. It

demonstrates the power of framing the legislation in abenign fashion, avoiding words such as ``euthanasia'',``killing'' and ``suicide'' and casts some doubt on

Humphry's rationale for the failure of the earlierWashington ballot.`Measure 16' was passed on November 8th 1994 by

a margin of 51 to 49%. In December of that year atemporary restraining order against the Act was suc-cessfully ®led by James Bopp, an attorney for the

requested death-opposing SMO `National Right toLife' (O'Neill, 1997), representing a group of phys-icians, patients and residential care facilities whoclaimed the Act was unconstitutional (Lee v. State of

Oregon 1994, 1994). The order was rescinded inFebruary 1997 (O'Neill, 1997), making the Death withDignity Act legal. It was not acted upon however,

until after November 1997, when Oregon votersrejected `Measure 51', which had been designed tooverturn the DwD Act, by a margin of 60 to 40%

(Roberts, 1997, p. 1253). The signi®cantly strongervote against `Measure 51' than the earlier vote for`Measure 16' has been attributed to a number of fac-

tors outside of increased support for assisted suicide,including ``voter anger'' at being required to voteagain on an existing Act (Roberts, 1997, p. 1253). The®rst lawful assisted deaths in Oregon occurred early in

1998 (Josefson, 1998; VESS, 1998).

Northern Territory Rights of the Terminally Ill (RTI)Act 1996

As noted, the RTI Act 1996 has been the most far-reaching of all legislative developments in therequested death movement to date. From July 1996

until March 1997, for the ®rst and only time in theworld, individuals were able to access lawful euthana-sia or physician-assisted suicide. While the four to die

under the Act, aided by Dr. Philip Nitschke, availedthemselves only of its assisted suicide provisions, thelegislation also provides for more direct assistance.

Under the Act (Northern Territory RTI Act 1996 s.3,my emphasis):

``assist'', in relation to the death or proposed death

of a patient, includes the prescribing of a substance,the preparation of a substance and the giving of asubstance to the patient for self administration, and

the administration of a substance to the patient.

While the Act does not use words such as `euthana-sia', `assisted suicide', or `mercy killing', preferring

instead ``assistance to voluntarily terminate life'' and``to terminate . . . life in a humane and digni®ed man-ner'' (Northern Territory RTI Act 1996 s.4 and

Schedule), it nonetheless is far more overt in itslanguage than the Oregon DwD Act, there being no

doubt as to what the legislation intends.During its operation, the RTI Act 1996 provoked

unprecedented interest. The Australian Federal

Parliament utilized its Constitutional powers to renderthe Northern Territory Act inoperative by passing theEuthanasia Laws Act 1997. This action, as McNamara

(1998, p, 180) observes, demonstrates that ``the man-agement of dying and death is highly contested''. Inthis instance, the requested death movement's aims

were thwarted and the status quo preserved, howeverthis by no means suggests that the movement `failed'on this occasion. Gus®eld (1994, p. 70) notes that:

[m]ovements may achieve stated, formal goals withlittle e�ect on the everyday behavior they seek totransform (Handler 1978), just as they may fail to

achieve major political goals while deeply a�ectingeveryday behavior . . .

The Northern Territory legislation stands as evi-

dence of the requested death movement's achieving amajor political goal in addition to deeply a�ectingeveryday behavior, at least insofar as requested death

was accessed by a number of individuals and attractedenormous public attention in the process. While theendurance of its in¯uence on understandings, attitudesand behaviors generally is unknown, during its oper-

ation it o�ered a major alternative to how a societymight organize around the deaths of its members.Given the dynamic state of the requested death move-

ment at the end of the twentieth century, it seemshighly likely that further successful mobilizations willbe forthcoming.

Conclusion

This paper has established the existence of a newsocial movement concerned with the ultimate controlof one's body at life's end, the `requested death move-

ment'. Taking a largely chronological approach, thepaper has traced the movement from its origins at ap-proximately the turn of the century, through a majorperiod of abeyance following WWII, to its reemergence

and advancing mobilization from the 1970s, and ®nallyto its progressive success during its comparatively hec-tic activity over the last decade. The paper has moved,

as has the movement itself, from a consideration of theframing of its issues and the emergence of individualactivists and events, to a consideration of the larger

impact of the movement as it has become more visibleand taken its challenge of existing ways of dying into awider socio-political arena.

F. McInerney / Social Science & Medicine 50 (2000) 137±154150

In common with most new social movements, therequested death movement is principally a phenom-

enon of the Western world. It has placed the mannerof death Ð its mode and timing Ð as experienced byindividuals of the late twentieth century centrally at

issue. It is perhaps the quintessential new social move-ment, having taken the preoccupation with resistingstate control of cultural matters and reclaiming matters

of identity, privacy and individual corporeality to theirultimate level. Kellehear (1998, p. 297) notes that thecurrent interest in euthanasia is not limited to ``a small

but vocal sectional interest in society''; indeed, theabove consideration demonstrates it is rather the out-come of an enduring and progressively dynamic andsuccessful new social movement.

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