ORI GIN AL ARTICLE

Autonomy and Dignity: A Discussion on Contingencyand Dominance

Leen Van Brussel

Published online: 4 July 2012

� Springer Science+Business Media, LLC 2012

Abstract With dying increasingly becoming a medicalised experience in old age,

we are witnessing a shift from concern over death itself to an interest in dying

‘well’. Fierce discussions about end-of-life decision making and the permissibility

of medical intervention in dying, discursively structured around the notion of a

‘good’ death, are evidence of this shift. This article focuses on ‘autonomy’ and

‘dignity’ as key signifiers in these discussions. Rather than being fully fixed and

stable, both signifiers are contingent and carry a variety of meanings within different

discursive projects. The article aims to distinguish the varieties of these signifiers by

elaborating existing theoretical perspectives on autonomy and dignity, and also,

starting from a perspective on mass media as sites of meaning production and

contestation, to study the contingency of autonomy and dignity in Belgian news-

paper coverage of four prominent euthanasia cases. By means of a discourse-the-

oretical textual analysis, this study exposes a dominant—yet contested—articulation

of rational-personal autonomy and of dignity in external terms as something that can

be obtained, retained or lost, rather than in terms of intrinsic human integrity. These

logics of representation reflect a more general late modern dominance of liberal

autonomy and of dignity as being closely connected to self-identity, but at the same

time result in limited visibility of alternative ways of experiencing an autonomous

and dignified death.

Keywords Autonomy � Dignity � Contingency � End-of-life decision making �Discourse-theoretical textual analysis

L. Van Brussel (&)

Communication Studies Department, Vrije Universiteit Brussels (VUB-Free University of Brussels),

Centre for Studies on Media and Culture, Pleinlaan 2, 1050 Brussels, Belgium

e-mail: levbruss@vub.ac.be

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Health Care Anal (2014) 22:174–191

DOI 10.1007/s10728-012-0217-0

Introduction

The identity of the ill and dying individual has been fundamentally re-defined in

today’s late modern societies. Whilst still embedded within a solid medical and

health-care system, the dying patient is increasingly regarded as a competent

individual, capable of making the own (end-of-life) decisions, rather than passively

at the mercy of the medical professional. Arguably, we are experiencing an

increased urge to control the course—i.e. the timing and/or manner—of death, thus

acting upon ‘the moment at which human control over human existence finds an

outer limit’ [14: 162]. The ideal of controlling the dying process is embedded within

a broader cultural framework of individualisation, secularisation and de-tradition-

alisation, in which both minor and major life events—including dying—become

features of self-identity [34]. More and more, dying ‘well’ means dying in accord

with the individual’s personal way of living; joyfully, beautifully, with dignity,

autonomously. The concern with my death is enshrined in the fierce debates among

medical professionals, ethicists, politicians and lawyers, as well as amongst the

general population, on the permissibility of human intervention in dying.

This article focuses on ‘autonomy’ and ‘dignity’ as key signifiers constitutive of

contemporary discussions on end-of-life decision making. Support for privileging

precisely these signifiers can first of all be found in the sociological literature on

death and dying, which considers autonomy and dignity to be crucial aspects of a

‘good’ death (see for instance [12, 18, 20, 34, 48, 49]). Also, several international

Right to Die associations, such as ‘vzw Recht op Waardig sterven’ and the

‘Association pour le droit de mourir dans la dignite’ in Belgium, ‘Dying with

dignity’ in Canada, ‘Derecho a Morir Dignamente’ in Spain and Japan’s society for

dying with dignity, and the resistance to them, bear witness to the centrality of

dignity and autonomy in contemporary conceptualisations of dying well in

medicalised contexts. Finally, a focus on autonomy and dignity is legitimised by

the empirical evidence analysed in the second part of this article, which

demonstrates the centrality of both these signifiers in Belgian newspaper coverage

of end-of-life decision making.1

These three arguments not only legitimise the focus on autonomy and dignity, but

also show that the meaning of these signifiers—in academia, civil society and mass

media—is neither stable nor fixed. The contingency of meaning has been illustrated

for a range of health-care related concepts, including empowerment and quality of

life (see for instance [42], and also applies to the concepts of autonomy and dignity,

which cannot be detached from processes of social construction and the logics of

contingency that lie behind them. Building on the discourse theory of Laclau and

Mouffe [22] in which it is argued that all social phenomena are essentially given

meaning to through discourse, defined as ‘a structure in which meaning is constantly

negotiated and constructed’ [21: 254], autonomy and dignity are considered here to

be ‘floating’ signifiers [22: 171], ‘overflowed with meaning’ [45: 301], because they

can have different meanings within different discursive contexts.

1 The cyclical nature of qualitative research and the interaction between the theoretical framework and

the empirical analysis are crucial features of this study.

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In what follows, I first try to capture theoretically the contingency of autonomy

and dignity through a discursive elaboration of existing perspectives on these two

signifiers. Second, I analyse the contingency of autonomy and dignity in North-

Belgian newspaper coverage of end-of-life decision making. Using discourse-

theoretical analysis, I examine the types of autonomy and dignity that dominate over

others.

Autonomy

Autonomy generally is associated with or even understood as equivalent to liberty,

freedom, self-rule, self-determination and independence. These concepts—especially

since the Enlightenment and the French revolution—have gained significance in

society, including in the interpersonal sphere, the political sphere, the legal sphere and

the medical sphere. Dominant articulations of autonomy in contemporary Western

societies focus on the influence of external forces and the ability to life live from one’s

own perspective [13, 26]. However, this way of thinking, which is grounded in

Kantian and liberal frameworks, is being challenged by alternative articulations. Four

models of autonomy can be distinguished and are discussed in this section: ratio-

restrictivism and ratio-personalism, which are rationalist approaches, and commu-

nicatianism and contextualism, which are emotionalist approaches.

Ratio-Restrictivism and Ratio-Personalism

Restrictive and personal approaches both focus on rationality. However, the latter is

mostly concerned with the moral question of whether or not this is what I ‘ought’ to

do, while the former is guided by individualistic considerations of what I ‘want’ to

do [37: 48]. While the ratio-restrictive view of autonomy proscribes rational self-

legislation, the personal alternative asserts that autonomous agents govern ‘their

own actions in accordance with rules of their own choosing’ (Mappes and DeGrazia

[25] quoted in [37: 48]) and hence is focused strongly on self-determination, self-

control and self-direction.

The concept of autonomy developed by the Enlightenment philosopher

Immanuel Kant (1742–1804) can be defined as ‘ratio-restrictive’. For Kant, the

notion of autonomy points to man’s responsibility to know what is required to act

morally and to man’s determination not to act immorally [41: 47]. In Kantian

articulations in which autonomy includes the property of the will ‘by which it is a

law to itself (independently of any property of objects of volition)’ (Kant [19: 42],

translated by Abbott), rationality restrictively guides autonomous decision making.

Thus, autonomy requires an agent who is self-legislative rather than subject to pre-

determined or other-given laws. However, laws determined by the self are not

arbitrary; they are moral laws, which, rather than promoting and satisfying

individual desires, should be guided by the individual’s ‘practical reason’ [37: 45].

In ratio-restrictive articulations, then, acting free of any influence—except that of

reason and morality—means acting autonomously. Arguably, autonomy consists

only of acting for the sake of reason [39: 10].

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In medical (end-of-life) decision making contexts, the restrictive concept of

autonomy is hardly applicable [9: 105]. It is uncommon for patients to be expected

to act only in accordance with the moral law—for the sake of duty—in the way

proscribed by Kant’s ratio-restrictivism. Such expectation would imply that patients

who act on the basis of personal preferences or desires—for instance by requesting

euthanasia because their quality of life is no longer considered sufficient—do not

meet the criteria of autonomy [37].

Liberal ratio-personalism presents a more concrete alternative to the ratio-

restrictive approach. A ratio-personal account of autonomy is grounded in the

concept of negative freedom, which gradually has become hegemonic alongside the

dominance of liberalism in the West. Ratio-personal articulations of autonomy are

tightly linked to liberal discourses which stress the importance of independence. In

liberalism, autonomy, above all, involves independence of action, speech and

thought and provides the foundations for a series of political, legal, civil and human

rights on the basis of which individuals can reject the interference of external

authorities or powers [1: 1]. In short, liberal discourses centralise the notion of

negative freedom as the right to be left alone [1: 14].

In medical (end-of-life) decision making contexts, a liberal articulation of

autonomy implies that patients have the right to make decisions that do not take

account of the preferences of any other persons. In the liberal model, for instance, a

patient has the right to request an end-of-life solution that does not take account of

any further ethical considerations. Of course, the ratio-personal articulation does not

say anything about the desirability of pure liberal autonomy. Benson [6], for

instance, argues that a fully autonomous man would not be very nice to know and

May [26: 302], whilst acknowledging the right to full liberal autonomy, suggest the

desirability of a more moderate and shared autonomy: ‘While we may encourage a

patient to decide to accept or reject treatment considering the impact of this decision

on community or family, we may not require this’.

Communitarianism and Contextualism

Whilst liberal articulations of autonomy in end-of-life decision making are

increasingly applauded, they are also severely criticised for being too rational and

for neglecting the emotional aspects of interpersonal relationships. Communitar-

ianism and contextualism are alternatives to the rationalist models elaborated above.

Questioning the desirability of rational autonomy, both focus on the emotional

relationships between the individual and his/her social environment. The commu-

nitarian alternative opposes the liberal ratio-personal model by celebrating the

social community, while contextualism attempts to reconcile liberalism with

emotionalist considerations.

In communitarian articulations, the self derives its identity in and through

membership in real communities, which means that individuals can never be

independent, but exist above all through identification with others. Campbell’s [9:

105] re-articulation of (in)dependence as part of the communitarian alternative

states that: ‘To be a creature is to be born of others, to know ourselves through them,

to depend upon them […]’. Hence, the communitarian articulation of autonomy is

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not in terms of independence and negative freedom, but calls for a valorisation of

dependence. Moreover, communitarian articulations of autonomy argue that life is

valuable not because individuals are independent agents who make their own

choices, but because their actions are in accord with the traditions and values of a

certain community. Consequentially, communitarian articulations often encourage

acceptance of the authority of tradition within the community [1: 32].

In medical (end-of-life) decision making contexts, there are several communi-

tarian critiques on the liberal notion of negative freedom. Secker [37: 50], for

instance, asserts that the celebration of negative freedom results in the equating of

autonomy with independence. She argues that negative freedom or non-interference

is insufficient for a patient who needs the assistance of a medical professional to put

certain decisions into practice. In similar vein, Campbell [9: 106] argues that the

equation of autonomy with independence devalues those who find themselves in a

state of dependence, implying that the fragile and the vulnerable are opposed to ‘the

‘successful’ patient, who ‘is always the one who transcends the state of

patienthood’. Whilst communitarian protections of the fragile and vulnerable have

an obvious emancipating potential, at the same time they tend to result in

straightforward rejection of certain end-of-life decisions, either because they are

‘selfish’ choices that take no account of the feelings of relatives, or because they are

not in accord with the community’s value system.

Agich [1] warns against communitarianism as an alternative to the dominance of

rational-personal articulations. He asserts that both frameworks make the same

mistake of restrictively embracing ultimate sources of authority. While ratio-

personal discourses embrace the individual as the ultimate authority, communitarian

discourses endow the community with this authority. Agich’s critique builds on a

wider tradition of contextualism, in which absolute truths or paradigms are rejected

and knowledge and truth are argued to be subject to circumstantial or contextual

variation (see for instance [51]). Agich applies contextualist reasoning to the field of

health-care, presenting contextualism as the more desirable alternative to both the

ratio-personal model and the communitarian model. Contextualism, he argues,

includes the view that actions and beliefs rationally can be legitimised without

appealing to absolute principles or theories [1: 34]. Agich’s model of contextualism

includes the communitarian emotionalist principle that humans are essentially social

creatures who construct their identities through their emotional relations with others

rather than through independence. At the same time, Agich’s model of contextu-

alism defends the legal protections and rights that liberalism provides [1: 35].

In end-of-life decision making, a contextualist discourse—as developed by

Agich—implies that a wide variety of end-of-life decisions can be legitimised—not

on the basis of the individual or the community as the absolute sources of authority,

but on the basis of a broad context in which a series of motives and beliefs are at

stake—including both personal preferences and interpersonal relationships.

Dignity

Closely connected to autonomy is the notion of dignity. Both concepts were used

politically, as instruments of struggle and resistance, during the French and

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American revolutions, and continue to be exploited in contemporary struggles over

the right to die. While originally autonomy was often attributed to noblemen and

intellectuals, the notion of dignity became the basis for the idea that ordinary

people, too, are capable of making their own choices, and have dignity. In an era

when slavery and aristocrat doctrine said otherwise, the idea of intrinsic human

dignity was quite radical [47: 6]. Of course, the principle of intrinsic human dignity

is only one possible articulation of dignity. In what follows, I discuss a range of re-

articulations of dignity that have emerged in contemporary late-modern societies.

Two models of dignity are distinguished and discussed here: the internal/intrinsic

model, with its religious and non-religious variant; and the external model and its

articulations of dignity as merit, dignity as conduct, and dignity as self-identity.

Religious and Non-religious Articulations of Intrinsic Human Dignity

The concept of dignity gained significant attention after the Second World War

when international instruments of human rights were being developed. In several

human rights declarations, the concept of dignity was explicit. The dominant way of

defining dignity in these human rights declarations was tied to one logic of

articulation in which dignity is seen as intrinsic to every human being [7: 13]. The

idea of intrinsic human dignity is a common feature of monotheistic religions, but

equally is central in non-religious articulations referring to capacities unique to

human beings—their self-consciousness and their capability of autonomous

decision making [30: 78]. The origins of these non-religious discourses are also

found in the work of Immanuel Kant.

The idea of dignity being attributable to all human beings, independent of their

individual characteristics, was developed first by the Ancient Greek Stoic School [4:

78], [30: 73] and was picked up by most monotheistic religions. In religious

discourses, then, the logic of intrinsic human dignity is grounded in the belief that

humans are created after God’s image and, therefore, have equal worth. Whilst

religious articulations of dignity often lead to social inequality (for instance between

men and women) based on the argument that those who most resemble God dispose

of the most dignity, the basic idea persists that all human beings have dignity

because they were created after the image of one God [4: 7], [7: 10], [30: 78].

In the context of end-of-life decision making, religious arguments are often used

to oppose euthanasia and assisted-suicide. Here, religious articulations straightfor-

wardly argue that every human life, whether well or ill, bedridden, conscious or

unconscious, is worth living. Moreover, religious articulations of intrinsic human

dignity reject end-of-life decisions that aim at speeding the dying process, arguing

that only God disposes of life. Choosing euthanasia, it is argued, rejects God’s gift

of life. However, religious articulations are often equally opposed to ‘vitalism’, i.e.

the preservation of biological life using all available technologies [43], [46: 365].

Here, the same celebration of a natural dying process in which the exact moment of

death is in the hands of God, is the argument propounded.

The non-religious articulation of dignity is grounded in Kant’s argument that in

the ‘Kingdom of Ends’, everything has either a price or a dignity; things have a

price, and human beings have dignity. If things have any value at all, Kant argues, it

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is subjective value; things can be regarded as good or valuable only if a human

being desires them. For Kant, the dignity of human beings lies in the fact that only

humans are capable of morality [41: 195]. Unlike things and animals, human beings

should be regarded as having absolute, objective and intrinsic worth, regardless of

whether or not they are desired by others. Therefore, human beings should regard

neither themselves nor other persons as merely objects of desire [7: 52–55], [41:

193–198]. The articulation of intrinsic human dignity developed by Kant has an

emancipating potential because it clearly condemns situations where persons are

treated as if they were not (fully) human [7: 18–20]. At the same time, however,

Kant’s intrinsic human dignity is highly restrictive since as it is not only lack of

respect for the dignity of others that violates human dignity, but also lack of respect

for the own dignity. In short, an intrinsic-restrictive articulation of dignity asserts

that we violate our own dignity whenever we aim immorally to satisfy our

inclinations; when we treat ourselves as mere things with only instrumental value

[7: 65], [41: 200].

In the context of end-of-life decision making, Kant’s intrinsic-restrictivism

results in a highly ambiguous logic. Kant says that suicide and euthanasia are

fundamental violations of human dignity that reduce the person to a mere ‘thing’

that has value only when its ‘quality of life’ is considered sufficient [23: 184]. At the

same time, Kant argues that not recognising oneself as a moral agent, capable of

autonomous decision making, violates one’s self-esteem. In the context of his

protest against the class-consciousness of eighteenth-century Germany for instance,

Kant says: ‘Be no man’s lackey—Do not let others tread with impunity on your

rights’ (cited in [52: 172]). If Kant’s restrictive reasoning is applied strictly in the

end-of-life decision making context, the question naturally arises as to what extent

those not capable of autonomous ‘reasonable’ decision making—including severely

brain damaged patients and patients with Dementia or Alzheimer—possess dignity.

External Dignity: Merits, Conducts, and Self-Identity

Contrasting with articulations of intrinsic human dignity is the articulation of

dignity as connected to a person’s conduct, social status and identity. Several

authors make the distinction between these two categories of dignity. Somerville

[38] and Aranda and Jones [2], for instance, write about human dignity as opposed

to social dignity, and Sandman [33] refers to the latter as contingent dignity.

Before the Enlightenment, a person’s ‘external’ dignity foremost depended on his

or her social rank; kings and nobles, for instance, were generally considered men of

great dignity [7: 50]. Whilst the trajectory of the Enlightenment directed the

tendency away from hierarchy towards ‘equal recognition of individual human

dignity’ [28: 7], dignity as merit—referring to a person’s merits and social positions

[30, 31]—continues to constitute one articulation of external dignity. A related

articulation of external dignity is connected not so much to people’s individual

merits, but to their (moral) conduct. Long before the Enlightenment, Aristotle [3]

famously wrote about dignity as one of the 14 virtues constitutive of a good life.

Traditionally, to ‘act with dignity’ is defined as acting with self-control and integrity

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[7: 50, 58] and excessive bodily behaviour—for instance excessive drinking and

eating—is regarded as ‘undignified’.

In contemporary societies, dignity is not only connected to human merit,

behaviour and conduct, it is also tightly linked to feelings of identity. Here, dignity

is articulated as a feature of self-identity. According to Nordenfelt [30: 78], ‘dignity

of identity’ refers to the way we see ourselves as integrated and autonomous persons

who have relationships with other human beings and is tied to the autonomy of both

the subject’s mind and body [31: 30]. The articulation of dignity as identity seems

vital in contexts of medical end-of-life decision making. Indeed, lack of autonomy,

Nordenfelt [30: 76] argues, increases the risk of intrusion into the private sphere of

the sick, old and dying who depend on the care of others. Kearl [20: 437] supports

Nordenfelt’s argument, saying that dignity cannot be asserted if one is totally

institutionalised and loses control over one’s own fate. Lamm (cited in [20: 437])

argues in similar vein, referring to a terminally ill old woman asking ‘Who owns my

body, Medicare, the hospital, the state, or me?’

For Nordenfelt, dignity of identity is often related also to our self-image [31: 30];

the way we experience the (embodied) ‘self’. When we feel that our ‘authentic’ self

is violated and we have ceased to be who we were, we often experience violation of

dignity:

The beautiful woman, whose identity has literally consisted of her beauty, is

through age gradually transformed into a much less attractive person. Likewise, the

athlete, whose fame is wholly dependent on achievements on the track, is over time

gradually transformed into a weak, disable person who is left out of the community

of old days [30: 76].

While, above all, it is the notion of dignity as self-identity that is relevant in

contexts of medical end-of-life decision making, articulations of external dignity in

terms of merit and conduct should not be neglected. First, it is perfectly feasible that

the medical professional is sensitive to a patient’s social status and/or merits, and

that a member of the royal family, for instance, will be treated with considerable

privileges. Second, and more relevant, the articulation of dignity as a conduct is

significant in contexts of ageing, illness and dying. Particularly in the context of

end-of-life decision making, this articulation would seem vital; because of the

contingency that accompanies the definition of dignity as a particular way of

behaving—as a particular way of dealing with dying—the notion can be used by

opposing social projects—either advocating or challenging (the legalisation of)

euthanasia.

Articulations of ‘Autonomy’ and ‘Dignity’ in Belgian Newspaper Coverage

Drawing on ‘existing ways of making sense of the world’ [27: 46], media texts are

important cultural resources that tell us something about the broader discursive

framework in which they operate. This is not to say that media either represent or

reflect an objective world of existence; rather, they are embedded within a particular

culture, which, in itself, is a system of representation [16]. It would be possible, of

course, to look at any externalisation or materialisation of meaning, including

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personal communication, infrastructure, laws, etc. The capital earned by the mass

media from bringing meaning into wide circulation, i.e. to be constituted by a

broader reality, but equally to be constitutive of that reality, legitimises the choice to

analyse media material. As Gurevitch and Levy [15: 19] assert; mass media serve as

sites where ‘various groups, institutions, and ideologies struggle over the definition

and construction of reality’. Arguably, due to their ubiquity in late modern societies,

mass media can be regarded as one of the key channels delivering the material that

allow people to understand and construct their social realities, including the reality

of end-of-life decision making. Whilst the purpose of this study is to analyse

meaning-making practices related to autonomy and dignity in mass media coverage

of end-of-life decision making, the way that these signifiers are articulated cannot be

isolated from the tendency of media to privilege the extraordinary over the ordinary,

the personal over the abstract, and the conflictual over the consensual (see for

instance [17, 35, 36]). These logics—which fall outside the scope of this article, but

which certainly require further research—potentially entail specific codes of

representing the social reality of end-of-life decision making.

Sample and Corpus

Belgium, as one of the few countries where euthanasia is legalised, presents an

interesting case study. In the empirical section of this article, four prominent

euthanasia cases that attracted considerable media attention in Belgium are

analysed. A first case is the euthanasia of Mario Verstraete, who worked for the

Flemish socialist party sp.a,2 and was relatively unknown before his public

announcement of his wish to die and request for euthanasia. Verstraete was

suffering from the non-terminal, but incurable neuro-disease Multiple Sclerosis. He

became a key actor in debates on the establishment of the euthanasia law in

Belgium. He was the only patient voice heard on the topic in the Belgian federal

parliament and, in 2002, was the first person ‘legally’ to opt for euthanasia, a

decision that provoked serious societal upheaval in the country.

In 2008, the euthanasia of the well-known Belgian writer, Hugo Claus, resulted

in considerable societal debates. Claus, the second case analysed, was not terminally

ill, but chose death because he was suffering from an early form of Alzheimers

disease. The debate on euthanasia was further inflamed by a third case a few months

later. This was the Belgian politician, Marcel Engelborghs, who had incurable and

terminal cancer and chose euthanasia.

In 2009, the 93 year old, non-terminally ill Amelie Van Esbeen, who was

suffering from a range of geriatric ailments, requested euthanasia. Her struggle for

her right to die stirred up debate on end-of-life decision making and the (limits to)

patient autonomy. Her request for euthanasia was rejected on the grounds that she

was neither incurably ill nor suffering unbearably; her response was to go on hunger

strike to protest the decision, as a result of which she eventully died ‘naturally’.

2 The sp.a is the Flemish socialist party which played a significant role in the legalisation of euthanasia in

2002.

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Using the online database Mediargus,3 every news item, from three newspa-

pers—Het Laatste Nieuws (HLN), De Morgen (DM) and De Standaard (DS)—that

referred to any of these four cases was selected. While HLN is considered a popular

newspaper, the other two could be described as ‘quality broadsheets’ that generally

appeal to a well educated audience. The analysis also includes a number of ‘press

genres’ [5: 13]: regular news items, commentary, reportage, and letters to the editor.

This allows us to include the newspapers’ ‘official voices’, which ‘express an

opinion, sum up the issues and make a moral judgment or decision upon the issue’

[24: 148], as well as a diverse—although edited—variety of opinions from the

newspapers’ audiences. The final corpus comprises 167 articles; 35 articles on the

case Verstraete, 84 articles on the cases Claus and Engelborghs,4 and 42 articles on

the case Van Esbeen.

Discourse-theoretical analysis (DTA) is used to examine dominant and alterna-

tive constructions of autonomy and dignity [10, 11]. DTA combines the basic

principles of qualitative analysis—captured for instance by grounded theory—with

the conceptual framework of discourse theory developed by Laclau and Mouffe

[22].

Methods: From Discourse Theory to Discourse-Theoretical Analysis

In the introduction to this article, it was argued that ‘autonomy’ and ‘dignity’

function as nodal points in contemporary constructions of dying well, while at the

same time remaining ‘floating signifiers’ [22: 171], ‘overflowed with meaning’ [45:

301], and with different meanings in different discursive contexts. The present

discourse-theoretical analysis examines the research question: ‘How are the

signifiers ‘autonomy’ and ‘dignity’ articulated in North-Belgian newspaper

coverage of four prominent euthanasia cases and how do these articulations relate

to the theoretically elaborated discursive variations of autonomy and dignity?’

Textual analysis is often considered a ‘messy method’ [44: 250], and more

analytical direction is needed for a successful study of the different articulations of

autonomy and dignity and how they attempt to attain, maintain or dislocate

dominant positions. It is necessary to determine a series of ‘sensitizing concepts’

[32: 7] to support the translation of discourse theory into discourse-theoretical

analysis [10]. Sensitizing concepts ‘provide starting points for building analysis’ [8:

259] and form the basis for a discourse-theoretical analysis [10, 11]. For this textual

analysis, the notion of discourse becomes a primary sensitizing concept, strength-

ened by the more specific discourse-theoretical concepts of articulation and nodal

points as secondary sensitizing concepts and the case-specific concepts of autonomy

and dignity as tertiary sensitizing concepts. In reality, the above theoretical

elaboration allows the discourse-theoretical analysis to look for frames of presence

and absence; for keywords, phrases, syntax, and other textual features that indicate

the presence or absence of specific discursive articulations of autonomy and dignity.

3 Mediargus is the digital media platform of the Flemish daily printed press.4 Because they occurred in the same time period, the cases of Claus and Engelborghs are regularly

reported in the same article. For this reason, the articles on Claus and Engelborghs are counted together.

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In addition to the specificity of discourse-theoretical analysis, the analysis follows

the more general methodological-procedural principles of qualitative-interpretative

content analysis [50], including openness of interpretation and the cyclical nature of

the relation between the theoretical framework and the empirical analysis [29:

320–321], [40: 588–594].

Ratio-Personal Autonomy and the Celebration of Dying Bravely

In the newspaper coverage of all four euthanasia cases, the frequently recurring

signifiers of ‘self-determination’, ‘choice’ and ‘freedom’ point to the dominance of

liberal ratio-personal articulations of autonomy at the expense of alternative models

and articulations of autonomy.

First, there are no indications of the presence of a ‘ratio-restrictive’ discourse as

developed by Kant, which would imply that autonomy is limited to acting only for

the sake of duty. Instead, ratio-personal articulations—concerned with the ‘rational’

pursuit of personal wishes and desires—are dominant in the newspaper coverage. In

the selected articles, the ideal of patient autonomy is most explicitly voiced by the

readers of the newspapers. For instance:

The most important thing about euthanasia is not death itself, it is knowing

that as a human being, you have the choice, the possibility, the freedom. (Het

Laatste Nieuws [Asse], 3 August 2008) (Letter to the editor, Hugo Claus)

Not only do letters to the editor construct an autonomous death as desirable;

similar, yet often more subtle constructions, are present in regular news items and

commentary pieces. The construction of dying autonomously—according to one’s

preferences—as heralding the possibility of a ‘good’ and even ‘joyful’ death, is an

example of this more latent celebration of autonomy in its liberal ratio-personal

form:

He left us in the way he wanted to. When he fixed the date of his death, he

didn’t say goodbye, but he ‘celebrated’ goodbye. (De Morgen [Brussel] 31

March 2008) (Regular news item Hugo Claus)

However, such subtle constructions often go hand in hand with a reductive

articulation of what autonomous decision making includes and—more impor-

tantly—what it does not include. When stating that ‘But the main issue remains that

Mario used his right to self-determination, his right to die with dignity, in a calm,

rational way’ (De Morgen [Brussel] 10 April 2002) (Regular news item Mario

Verstraete), for instance, autonomy—the right to self-determination—is indirectly

equated with the choice of euthanasia, which, in turn, is equated with ‘dying with

dignity’. In this way, the ‘choice’ not to choose euthanasia is constructed as

‘choosing’ an undignified death. Choice and choosing are put between quotation

marks because they are discursively constructed as non-choice; a passive

postponing of death, not an active choice for a dying process that does not include

euthanasia. In this fashion, alternative ways to encounter death—including the

choice not to opt for euthanasia—are discursively delegitimized:

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They could have postponed the moment of death, but they did not want to. To

not lose anything of awareness, life enjoyment and dignity. (Het Laatste

Nieuws [Asse] 21 March 2008) (Regular news item Hugo Claus & Marcel

Engelborghs).

More remarkable than the absence of ratio-restrictive articulations of autonomy,

are the suppression and marginalisation of emotionalist models of autonomy, which

result from an ambiguity in the construction of euthanasia in the analysed coverage.

On the one hand, the practice of autonomy, in the form of euthanasia, is constructed

as a brave, courageous and exceptional act. In the case of Hugo Claus, this

exceptionality is created through the construction of an identity of the ‘rebel artist’.

For instance, by combining the statement ‘He has always made his own decisions,

until the last goodbye’ (Het Laatste Nieuws [Asse] 20 March 2008) (Commentary

piece), with an appreciative, admiring description of Claus (‘A universal artist,

painter, sculptor, director, and cineaste’), autonomous end-of-life decision making is

constructed not only as desirable, but as a noble deed. Because of Claus’s celebrity,

his autonomous choice of euthanasia is represented as unusual and not reserved to

everybody. Rather, euthanasia requires the existence of ‘an autonomous mind’, ‘an

example’, a master’, ‘a rebel’ (Het Laatste Nieuws [Asse] 31 March 2008 (Regular

news item); (De Morgen [Brussel] 21 March 2008) (Commentary); (De Morgen

[Brussel] 20 March 2008) (Reportage). In the cases of Mario Verstraete and Marcel

Engelborghs, a sense of extraordinariness is created by articulating their dying

identities with the identities of ‘an epicure’ or ‘a bon-vivant’ (Het Laatste Nieuws

[Asse] 5 March 2008, 3 August 2008 and 2 October 2002) (Traditional news items and

commentaries). Engelborghs is described as always enjoying life, and as having the

‘great courage’ (Het Laatste Nieuws [Asse] 3 August 2008) (Letter to the editor) to

make the autonomous end-of-life decision that allows him to ‘continue enjoying life

until the very last moment’ (Het Laatste Nieuws [Asse] 21 March 2008) (Regular

news item). Similarly, Verstraete’s choice for euthanasia is legitimised through the

use of economic rhetoric and reference to his culturally epicurean self: ‘If I cannot go

to concerts and operas anymore, my life quality is over. Then I want to be withdrawn

out of circulation professionally’ (Het Laatste Nieuws [Asse] 10 January 2002).

Finally, in reporting Van Esbeen’s dying process, a sense of extraordinariness is

created through an identity-construction of an ordinary hero; a ‘brave lady’ (Het

Laatste Nieuws [Asse] 25 December 2009) (Regular news item) struggling against the

medical and political system for her right to die.

On the other hand, however, the practice of patient autonomy in the form of

euthanasia is discursively normalised as the ultimate act of self-determination which

every rational, independent human being should pursue. Such an—again liberal ratio-

personal—construction goes hand in hand with a discursive marginalisation of a

palliative care-based death as a passive way of dying, preserved for those who lack the

courage to use their ultimate self-determination right. In representing palliative care in

this way, the dying patient is reduced to a ‘suffering’, ‘dependent’ burden’. For instance:

Then I can go to palliative care and be dependent, continue to suffer and

deteriorate and be a burden to the whole society. (Het Laatste Nieuws [Asse] 3

July 2008) (Reportage Marcel Engelborghs)

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By negatively evaluating states of dependence, emotionalist articulations of

autonomy are excluded from the coverage, and when they are represented, they are

marginalised by a depreciation of palliative care and contexts of dependence.

It is only rarely the dominant ratio-personal articulation of autonomy equating

dying ‘bravely’ with the choice for euthanasia, is challenged. The most obvious

objection is the communitarian view voiced by representatives of the religious field

who argue that ‘God disposes in death, not men’ (Het Laatste Nieuws [Asse] 25

March 2008) (Commentary Hugo Claus), suggesting that it is God not the individual

who has the ultimate authority to decide about life and death.

A more interesting - but less frequent—challenge includes an emancipating ‘de-

othering’, opposing the construction of antagonistic articulations of dying auton-

omous. Such an articulation of autonomy is close to the emancipating contexualist

alternative presented by Agich [1]. In the quote below, the right actively to

intervene in one’s own dying process and the right not to are implicitly positively

acknowledged:

Either you raise a toast on your death with apparent insouciance or you wait,

sometimes in intolerable pain, for the releasing end. In the first scenario you

are brave, in the second scenario passive. But should it be so black and white

in the face of death? (Het Laatste Nieuws [Asse] 28 March 2008)

(Commentary Hugo Claus & Marcel Engelborghs)

External Dignity and Avoiding the ‘Shameful’ Death

Closely connected to the construction of autonomy in terms of dying ‘bravely’, the

analysis reveals a construction of dignity as opposed to a ‘shameful’ and ‘messy’

death. This construction is grounded in the dominance of articulating dignity as an

external value rather than as an intrinsic human integrity. Specifically, two modes of

articulating external dignity, i.e. the articulation of dignity as conduct, as a way of

dealing with one’s dying process, and the articulation of dignity as self-identity,

result in a dominant construction of dying with dignity as opposed to a shameful and

messy death.

First, in defining dignity in terms of a ‘mode of dying’, a dying process in which

the dying patient avoids a ‘messy’ and ‘shameful’ dying process is applauded, and is

in opposition to the articulation of dignity as intrinsic integrity. The dying patient

who is not giving into the fear of death, but is choosing to die before being reduced

to becoming a burden, is celebrated:

Demented people are very often a burden to others, also to their own family. If

I ever get the chance to opt for euthanasia before I don’t know I exist, I would

immediately do so. (Het Laatste Nieuws [Asse] 22 March 2008) (Letter to the

editor Hugo Claus)

Similar articulations can be found in articles representing the voices of dying

patients stating that ‘The certainty that I will get euthanasia and that I will die with

dignity, is sane, has given me the peace of mind’ (Het Laatste Nieuws [Asse] 8

March 2008) (Regular news item Marcel Engelborghs). Hugo Claus is argued to

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have dealt with his dying process in a dignified way; not giving into the fear of

death, but leaving us ‘as a shining star, just in time, before he collapsed into a

clumsy black hole’ (Het Laatste Nieuws [Asse] 23 March 2008) (Commentary). The

coverage of Claus en Engelborghs makes it clear how the identity construction of an

‘extraordinary’ man, of people whose political or artistic merits endow them with

‘great dignity’, comes with certain assumptions about the way ‘great men’ die—

with dignity; i.e. before being affected by illness and deterioration.

When looking at how the choice for euthanasia is legitimised and even

celebrated, the articulation of dignity as self-identity comes to the fore. In the

newspaper coverage, it is the degradation of autonomy and independence that

threatens the dignity of the dying person and results in a shameful dying process.

The coverage of Mario Verstraete’s euthanasia is an example. Due to the physical

deterioration of his body, Verstraete is argued to be experiencing a very shameful

illness- and dying process. No longer being under autonomous control is evaluated

negatively as an aspect of an ‘ugly’, and ‘messy’ dying process in which the body

becomes a source of shame:

When he went through the most awful things at the most unexpected moments,

when he lost control over his primary functions and he had to relieve himself

in a friend’s car. How for many years he had carried a doctor’s note saying

that he was allowed to urinate in public places if necessary. He was terminally

ashamed (De Morgen [Brussel] 28 December 2002) (Reportage)

Also the medical institutionalisation of the dying process is represented as a

threat to the dying person’s integrity. The medicalisation of aspects of life that were

always part of the private sphere is represented as affecting the dying person’s

dignity. Mario Verstraete’s mother tells us that:

For months, when he was still a little bit better, Mario figured out how to live

his life in a relatively joyful manner. He visited institutions, palliative

services. Everything, he returned head shaking. He wouldn’t be able to play

his music, friends would have to visit at certain times, he wouldn’t be able to

do what he want, smoking a cigarette at his room wasn’t allowed, let alone that

he could play those loud aria’s in his room (De Morgen [Brussel] 28

December 2002) (Reportage)

Similarly, the political and legal institutionalisation of death is represented as a

threat to the dignity of the dying patient because it reduces the person’s right to

claim his or her body and make autonomous end-of-life decisions. In the newspaper

coverage of Van Esbeen’s dying process, the emphasis is on the intrusiveness of the

medial and legal systems into Van Esbeen’s private experience of dying. The

medicalised and legalised categorisation of Van Esbeen’s body as suffering ‘from

all sorts of geriatric ailments’, ‘but not terminally ill’ (Het Laatste Nieuws [Asse] 2

April 2009 (Regular news item), labels the dying patient’s body as not qualifying for

euthanasia and thus prevents Van Esbeen from ‘claiming’ her own body.

Another aspect of dignity that is as linked to self-identity is revealed when

dignity is articulated with notions of the ‘self’. It is particularly eminent in the

coverage of Amelie Van Esbeen’s dying process, in which the dying person’s

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declining and deteriorating body is constructed as a threat to a dignified death

because the body can no longer represent the ‘authentic self’—that of a proud and

independent woman who ‘lived alone until the age of 88 and did everything for

herself’ (De Morgen [Brussel] 2 April 2009) (Reportage). Indeed, the weakened

body means that Van Esbeen increasingly depends on the care of other people,

which is constructed not only as incompatible with her former self, but also as

deeply shameful: ‘[…] decreased vision, hearing disorders, incontinence, and a

limited independence. And all of that for a woman who had been extremely

independent and very well surrounded during her whole life’ (De Standaard [Groot-

Bijgaarden] 6 April 2009) (Opinion Article). Similarly, dementia, the illness that

Claus suffered from and which made him unable to ‘mould his words into clear

phrases, create the right expressions and metaphors’, is constructed as threatening

his former and authentic eloquent and intellectual self. (Het Laatste Nieuws [Asse]

23 March 2008) (Commentary).

Conclusion

Autonomy and dignity as key signifiers constitutive of contemporary conceptuali-

sations of dying well in medicalised contexts, cannot be detached from processes of

social construction. The logics of contingency that lie behind these processes are

demonstrated in the theoretical and empirical discussions in this article. At the same

time, particular articulations of autonomy and dignity are shown to dominate over

others, with the result that some attempts to fix the meaning of both signifiers are

more successful than others.

Ratio-personal articulations of autonomy are dominant over ratio-restrictive

articulations and emotionalist articulations of autonomy. This logic is tied to the

contemporary hegemony of the liberal ideals of negative freedom and indepen-

dence. The dominance of the liberal model is reflected in the newspaper coverage

analysed, in which the dying patient who autonomously, with no interference from

external forces, makes his or her own end-of-life decisions, is celebrated. This

celebration results in autonomy being equated with euthanasia; in a construction of

a ‘brave’ death where the patient uses his ultimate right to self-determination. The

celebration of liberal autonomy, and the accompanying construction of the brave

death, drowns out emotionalist articulations, which are silenced or at least

marginalised. However, the rare appearance of contextualist articulations that go

beyond a ‘euthanasia versus palliative care’ dichotomy demonstrate the instability

of meaning and the incapability of a discourse to entirely fix elements of

signification.

In relation to the key signifier ‘dignity’, it has been argued that the model of

intrinsic human dignity is challenged by articulations of external dignity. In the

context of end-of-life decision making in particular, articulations of dignity as self-

identity gain increasing significance, at the expense of models of intrinsic human

dignity. In the newspaper coverage analysed, dignity as intrinsic human integrity is

almost invisible and it is the articulation of dignity as self-identity that is dominant.

Here, the individual’s dignity is represented as under threat when deterioration

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affects the ‘authentic’ self, and when the institutionalisation of the dying process

intrudes into the private sphere. Moreover, not giving into the fear of death, but

rationally choosing to die before one is reduced merely to being a ‘burden’, is

celebrated as a desirable way to manage the dying process. At the same time,

resistance to these dominant models of dignity can be found in religious

articulations of intrinsic human dignity.

In brief, the media articulations of autonomy and dignity presented in this

analysis, accord with a more general late modern dominance of the liberal ratio-

personal models of autonomy and external dignity, in which dignity is articulated as

something that can be lost or obtained. At the same time, as in every attempt to fix

meaning, these dominant articulations are not absolute and can be challenged by

emotionalist articulations of autonomy and articulations of intrinsic human dignity.

In taking heed of specific media logics of individualisation and dramatisation, it is

crucial to note that the set of representations of autonomy and dignity revealed by

this analysis, is likely to be more reduced and more limited than in other spheres of

meaning-making, including, for instance, contexts of caring and nursing. We need

further research to study the contingency of autonomy and dignity in other spheres

of the social.

Acknowledgments The author is funded by the FWO (the Flemish independent agency for funding of

scientific research).

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