Desperately Seeking Certainty? The Case of Asylum Applicants and People Planning an Assisted Suicide in Switzerland
by Naomi Richards and Rebecca Rotter
University of Sheffield; University of Edinburgh
Sociological Research Online, 18 (4) 26
Received: 6 Jun 2013 Accepted: 18 Oct 2013 Published: 30 Nov 2013
Uncertainty is often deemed to be a quintessential fact of life. The social scientific literature often references a generalised or 'global' uncertainty, akin to a worldview. Far fewer studies, however, discuss the specific effects of 'event' focused uncertainty: how it is managed by groups and individuals, or how this type of uncertainty relates to the concepts of risk, trust, hope and time. This article seeks to identify and analyse key aspects of the condition of uncertainty through an empirical exploration of two very different case studies: asylum applicants waiting for the state to decide whether to grant them the right to remain in the UK, and people with chronic or life-limiting illness who want to hasten their own death with the help of a Swiss right-to-die organisation. In both cases, participants experienced a heightened state of uncertainty because of specific and substantial threats to their well-being: deportation, and protracted suffering through illness. In both cases, the acquisition of knowledge was considered to aid predictions about future events. However, both sets of individuals encountered barriers to acquiring the right kind of knowledge - knowledge which was trusted to be accurate or which came with a guarantee. While all the individuals were constrained in their ability to act to relieve their uncertainty, they found limited ways of doing so. Knowledge and action are thereby found to be crucial to the condition of uncertainty and to the means of overcoming it through restoring a sense of control.
Keywords: Uncertainty, Trust, Risk, Asylum Seekers, end-of-life, right-to-die
Introduction1.1 In the aftermath of the global financial crisis in 2007, the term 'uncertainty' has featured heavily in the rhetoric of the world's political leaders to describe the present economic situation. The words of Christine Lagarde, head of the International Monetary Fund, are an example of the current ubiquity of the term:
Risks to the global economy are rising, but there remains a path to recovery (…) There are lingering uncertainties, but resolute action will help to dispel doubts.Already in this quote it is evident that uncertainty, when viewed in a negative light, is linked conceptually to risk and that its remedy is perceived to be 'resolute' action of some determinative kind. The term 'risk' addresses situations where there is a perceived threat to something that is deemed to be of value. However, that threat must be uncertain, otherwise there would be no inherent risk to its occurring or not occurring (Boholm 2003: 166). The current risks to the global economy are a deepening and lengthening of the recession and its attendant hardships. Such macro-level risks entail uncertainty because probabilities cannot be properly calculated. At a fundamental level, uncertainty is related to the knowledge we have at our disposal at a particular point in time which enables us to make predictions about the future.
1.2 The idea that we live in an 'age of uncertainty', a historical moment that is uniquely indeterminate, pervades popular culture in the Western world (Gardner 2011). However, the experience of uncertainty is a lasting fact of life. As Barbier (2011: 14-15) writes, 'human life is quintessentially transitory […] uncertainty and contingency are at the heart of the human condition'. Jenkins and colleagues (2005: 12), too, see uncertainty as 'a generic feature, and indeed definitive of, the human condition in general'. Penrod (2001: 241) distinguishes between generalised or 'global' uncertainty, which is akin to a worldview, and specific, event-focused uncertainty. Much of the scholarly literature focuses on the generalised, ubiquitous form of uncertainty, and in doing so, rarely elaborates on or properly defines the term and the experience it relates to. Our intention in this article is to contribute specificity to the discussion by focusing on the more overlooked form of specific, event-induced uncertainty and interrogating how it manifests itself as a particular mode of being, how people cope with it, and how they try to manoeuvre themselves out of it. We refer to this specific uncertainty as a 'heightened state of uncertainty' and offer key insights into how it is experienced for two groups of individuals: people who have applied for asylum and are waiting for the state to decide whether to grant them the right to remain in the UK, and people with chronic or life-limiting illness who want to hasten their own death with the help of a Swiss right-to-die organisation. The state of uncertainty affecting these two sets of individuals was induced not by generalised risks, such as crime, pollution or a failing economy, but rather by one specific and substantial risk: deportation and subsequent persecution, physical harm or even death; and protracted suffering as a result of illness resulting in a 'bad' death.
1.3 Heightened uncertainty can usefully be defined as a state of being which prompts feelings of discomfort and unease but which also can be mediated by feelings of confidence and control (Penrod 2001: 241). It is the opposite of what Giddens (1990: 92) calls 'ontological security' - a state of feeling secure or certain which rests on a sense of the reliability and predictability of the routines of daily living:
the confidence that most human beings have in the continuity of their self-identity and in the constancy of the surrounding social and material environments of action. A sense of reliability of persons and things, so central to the notion of trust, is basic to feelings of ontological security.The concept of ontological security captures the way in which heightened uncertainty is directly linked to the knowledge a person possesses, their trust in others and the world itself, and their ability to act. Crudely put, uncertainty arises when there is a lack of knowledge with respect to future events; an inability to anticipate the actions of others on whom one relies; and a lack of trust that they will behave in a favourable way. Action directed towards accruing knowledge or modifying existing knowledge can be viewed as a remedy for uncertainty. Both the case studies described in this article involve people for whom access to knowledge, trust in others, and the possibility of determinative action was very limited. For the asylum applicants in the first case study, the precarious journeys they made to the UK entailed many risks, and hence uncertainty. Upon arrival in the UK, most of the people in this study did not speak English, had few contacts in the country, and found themselves in a relatively alien and unpredictable environment. Decisions concerning their future immigration status lay with others: initially civil servants working for the Home Office and, later, legal adjudicators who would hear their appeals on initial decisions. Participants perceived themselves to have little control over these decisions and felt alienated by a legal system of which they had no or very limited knowledge.
1.4 In the second case study, people with chronic or life-limiting illness wanted to procure help to die in Switzerland, the only jurisdiction where it is legally permissible to prescribe lethal doses of barbiturates to foreign nationals. The uncertainty experienced by the people in this second study resulted from a lack of knowledge about how long their suffering would continue as well as the risk that it might worsen. In applying to the right-to-die organisation Dignitas, they were attempting to take action in the present to eliminate the uncertainty caused by the risk of protracted suffering in the future and to restore a sense of control to their lives. Once they had made their application to Dignitas, however, their condition of uncertainty often persisted because there remained a risk that they would not meet the criteria to be granted a 'green light' with the organisation.
Conceptualising uncertainty: theoretical and empirical contributions2.1 Much recent theorising on modernity has focused on the interlinked notions of risk and uncertainty (Giddens 1991; Beck 1992; Bauman 2000; Bourdieu 1999; see also Boholm 2003). While earlier scholars such as Knight (1971: 20) tried to distinguish risk from uncertainty by arguing that risk is calculable while uncertainty is not, more recent theorising suggests that the proliferation of risks in late modern societies makes them anything but amenable to realistic calculation. For both Beck (1992) and Giddens (1991), the key distinction between industrial society and 'late' modernity is the intensification of risks arising from the unprecedented pace and scope of scientific and industrial development. Globalisation means that risks now cross national and socioeconomic boundaries, making them more difficult to calculate and control (Tulloch & Lupton 2003:2). Although some commentators have challenged the view that late modernity inherently entails more dangers (Douglas & Wildavsky 1982; Hacking 1990), most would agree that the perception of danger has increased.
2.2 Beck's (1992) view is that the heightened perception of risk has been induced by a loss of the trust in science and progress which dominated the early twentieth century. This has been replaced by the idea that the individual can authoritatively guide his or her own actions and reflexively assess or revise the knowledge of the 'experts'; what Beck terms 'reflexive modernisation'. Ordinary individuals are compelled to reflexively use knowledge about risks and opportunities, calculating and choosing between options, in order to plan their actions. The endless possibilities for revision of knowledge; the notion that specialist information can be reappropriated by lay actors (Giddens 1991: 22); and the suspicion that all knowledge now takes the form of hypotheses because it is so laden with doubt (ibid.: 31), are all aspects of the 'risk society' which are considered to increase the uncertainty experienced by people at all levels of social life (Tulloch & Lupton 2003:3). *
2.3 According to Beck (1992), a facet of the 'risk society' is that people often find placing trust in 'experts' problematic, because their knowledge is seen as being open to revision. Trust has been conceptualised as the confidence a person has that others will behave in a way that is not detrimental to them (Baier 1986; Gambetta 1988). Trust is necessary when there is a lack of full information (Giddens 1990: 33) and relies on an ability to 'anticipate the actions of those with whom one interacts' (Bjornberg 2011: 3.9). O'Neill (2002: 13) disputes Baier's (1986) and Gambetta's (1988) view that in placing trust in others we rely on them having at least minimal good will towards us. Instead, she suggests that in terms of our dealings with professionals, all we can expect is that they will play by the rules and achieve required standards. O'Neill (2002:12) goes on to argue that a total inability to trust others is 'untenable in practice' because it would prevent action entirely. However, as we show in this article, for our participants, action often involved circumventing those who were mistrusted, rather than continuing to place trust where it was not deemed to be warranted.
2.4 Other approaches to risk emphasise the socio-cultural settings in which it is produced and acted upon. In their influential cultural theory of risk perception, Douglas and Wildavsky (1982) suggest that risk is not a matter of calculable probabilities but rather a social process. They argue that different moral frameworks affect the judgment of what dangers should be most feared and what risks are worth taking. Thus, dangers are not self-evident but selected for public concern according to the strength and direction of social criticism (ibid.: 6-7). Risk, then, has a political dimension which can be used to apportion moral responsibility and blame (Douglas 1992; Joffe 1999).
2.5 Ethnographic accounts reveal how people have always tried to use magic, rituals and divination (cf. Evans-Pritchard 1937; Jackson 1978; Malinowski 1965; Turner 1975) to attempt to foretell future events or discover what is unknown; in order to make sense of the unexplained or to create a shield of predictability against the unexpected (Flad 2008; Parish 2005). The relationship between divination and the condition of event-induced, heightened uncertainty has been explored in detail by Whyte (1997; 2005). Her ethnography of the Nyole people in Bunyole, Uganda describes how in the context of widespread HIV/AIDS infection, people continue to appeal to divination as an explanatory idiom, even though it does not offer certainty, because it keeps possibilities open, thereby continuing to offer a way forward (2005: 263). Such accounts highlight the idea that it is not always beneficial to create conditions of certainty because knowledge of a certain negative outcome excludes the possibility of hope for a better outcome. Recent anthropological contributions focus on uncertainty as a product of specific interactional dynamics: inscrutable intentions; knowledge gaps between social actors; and double binds (Berthomé et al. 2012: 129). These collected works argue that such micro-level uncertainty is not a problem to be dealt with but rather a productive social force creating the possibility of interactions and helping to sustain human relationships (ibid. 130, 133).
2.6 Dewey (1930) viewed the precarious character of existence as something to be celebrated because it stimulates the human capacity to imagine, plan and control the processes of nature (Diggins 1994: 223). More recently, Bauman (1997, 2000) finds that a feature of the postmodern condition is a compulsion to keep one's options open and resist fixity, and this is something which uncertainty is seen to aid. Mishel (1990) contends that when there is a high probability of a particularly poor outcome, uncertainty is generally reappraised as 'opportunity' because it is considered a preferable state. Such reappraisals inevitably complicate the more simplistic view of uncertainty as a solely negative condition. They also sharply contrast with psychological studies which show that: 1) pleasure can be generated by uncertainty which stems from not knowing which of a variety of positive outcomes will eventuate (Wilson et al. 2005; Lee & Qiu 2009) and 2) that certainty, even of negative outcomes, is linked to higher levels of well-being (Arntz et al. 1992; Gilbert 2009; Smith et al. 2007). Lupton and Tulloch (2002: 114) have pointed out that people are not always as inherently risk averse as much of the sociological literature would have us believe. Studies of people voluntarily engaged in risky behaviours such as extreme sports (Lyng 1990, Stranger 1999, Hargreaves 1997) and anti-social behaviour (Collison 1996, Canaan 1996) reveal that risk-taking can enable people to: conquer fears; display courage; seek excitement and thrills; achieve a sense of self-actualisation or self-control; and conform to or challenge gender stereotypes (Lupton and Tulloch 2002: 115).
2.7 A vital means of coping with uncertainty is through maintaining hope. Hope has been conceptualised as conviction without any evidence; an openness to the future even if one does not know what it will bring (Hage 2003: 24; Lindquist 2006: 6). Hope may be concrete, directed at specific objects, or transcendent, when unspecific in orientation (Marcel 1951; Smith & Sparkes 2005). It is socially mediated; it may be denied or given legitimacy by others (Hage 2003; Christakis 1999). Hope can help to sustain a focus on favoured outcomes (Eliott & Olver 2007), or more specifically, it can help in the identification of realistic goals and paths towards achieving those goals (Morse & Penrod 1999: 149).
2.8 In the two empirical studies presented here, uncertainty was not regarded as a positive or desirable state. Both sets of individuals were desperately trying to remedy their state of uncertainty. A pertinent question is whether uncertainty of outcome would have been considered preferable to news of a certain negative outcome. During both studies, instances were observed where participants received at least temporary certainty; in the first case, the refusal of the asylum claim and/or appeal, and in the second case, the refusal of access to Dignitas. Both sets of individuals were not content with such outcomes. They hoped for - and continued to take action to achieve - a positive outcome (settlement in the UK; an end to suffering; a good death), not merely a state of certainty.
2.9 The two cases have several shared features which stand out: the magnitude of the risks the individuals faced; the lack of trust in state decision-makers which heightened their uncertainty; and the relatively limited scope of action which was available. Despite the fact that both sets of individuals were living in radically different circumstances, they articulated, and we as researchers observed, similar experiences of uncertainty and approaches to managing it. In the academic literature, both people with chronic and life-limiting conditions (cf. Becker & Kaufman 1995; Mishel 1990, 1999; Heyman & Henriksen 1998), and people forced to become refugees to avoid persecution and torture (cf. Colson 2003; Loizos 2007; Peteet 2005), are judged to exist in a state of uncertainty. In bringing these two case studies together in this article, we reconceptualise the condition experienced by such individuals as a 'heightened state of uncertainty' and we show how the condition is related to notions of risk, trust, hope and time. We do this by identifying 1) why our participants were living in a state of uncertainty and 2) the resources they drew upon and strategies they employed to try to manage or resolve their uncertainty.
Methodology3.1 Both studies were qualitative, relying on formal life history interviews and descriptive data collected via ethnographic methods, whereby the researchers directly observed and participated in the activities of the individuals concerned (Bryman 2001). Identifying what was of significance to participants themselves was also part of this process. Following Wikan (1996), experience was not treated as though it were transparent and directly accessible through people's narratives. By supplementing interview data with observations, differences could be detected between what was said in narrative and what was done in practice. In the analysis stage, interview transcripts and extensive and detailed field notes about events, meetings and interviews were carefully read and re-read and then coded according to key themes (Scott Jones & Watt 2010: 161).
3.2 The first case study presented is based on research conducted in Glasgow in 2007-2008 with around sixty asylum applicants, their legal representatives, and the staff of voluntary sector organisations. The fieldwork involved: participant observation with individuals in their daily routines; attending meetings with legal representatives; observing asylum appeal hearings; and participating at local community projects, meetings and events. The asylum applicants came from over twenty-four countries in the Maghreb, the Caucasus, West and East Africa, South-Eastern Europe, the Middle East and South Asia. They had fled their countries of origin after being subjected to intimidation, oppression, and in some cases, torture, by the government, government-sponsored militias or non-state actors. Most had been targeted on the basis of their (or family members') political activities, religious practices, or ethnic identities. At the time of the research, the shortest period that any individual had been waiting in the asylum process was one year and ten months, and the longest, nine years.
3.3 The second case study is based on interviews conducted in 2007-2008 with people who wanted to travel to Dignitas in Switzerland to end their life. These interviews formed part of a larger study examining the UK's 'right-to-die' debate, and this in-depth knowledge of the broader political context informs the analysis presented here. Contact was made with the individuals through a Scottish organisation called Friends at the End, which is the UK's main point of call for people wanting to travel to Dignitas. In total, seven formal interviews were conducted, but there was also informal communication with some of these interviewees over the course of several months, and in some cases, years. The three stories included in this case study were selected because each reveals a different aspect of how Dignitas was used as, or came to symbolise, a way of moving out of a state of uncertainty.
3.4 Conducting both studies required great sensitivity to participants' circumstances and psychological states and participation in the research was given thorough ethical consideration in accordance with professional guidelines. In the case of the research with asylum applicants, informed consent was treated as an on-going process of negotiation rather than a discrete act of choice in a given moment of time (Corrigan 2003; Harper & Jimenez 2005: 11). As disclosure of personal information would not only constitute a breach of trust and confidentiality but also potentially threaten the safety of some individuals, all participants and the organisations to which they were affiliated were anonymised in fieldnotes and publications. A decision was made to move 'beyond harm minimisation' towards greater reciprocal benefits for participants. The researcher demonstrated a commitment to upholding the rights and dignity of asylum applicants through long-term volunteering with a refugee advocacy organisation. This also allowed potential participants to get to know the researcher and learn about the research before they were invited to participate. Participation offered individuals a chance to narrate the reasons why they came to the UK, the difficulties of return, and their present circumstances, as well as to make sense of traumatic experiences and have a sympathetic other 'bear witness' to atrocities committed against self or others (Agger 1994; Eastmond 2007; Harrell-Bond & Voutira 2007). Various forms of practical assistance, such as English language tuition, were also offered to participants (cf. Eastmond 2007; Mackenzie et al. 2007; Temple & Moran 2006). It was crucial to clarify verbally throughout the research process the limits of what could be offered and achieved by the research and the researcher, particularly in relation to the ability to influence participants' immigration status.
3.5 In the second case study, the legal position for those accompanying or 'assisting' people to go to Dignitas was, at the time the research was conducted, unclear. What constituted 'assistance' in the eyes of the law was also unspecified. For these reasons, the researcher had to make it very clear to participants throughout the duration of contact that she neither supported nor opposed their actions with respect to trying to secure a hastened death. There was a high degree of confidentiality surrounding all the interviews/meetings with participants, and data were anonymised and kept very secure as soon as they were captured through storage of hard copies in locked facilities and password-protection of electronic files. Some participants had chosen not to inform family members of their intentions which further heightened the need for caution and sensitivity when arranging meetings.
CASE STUDY 1: 'Worrying and thinking too much about the papers': the causes and manifestations of uncertainty for people navigating the asylum process4.1 The participants in this research reported experiencing an initial sense of relief upon arriving at a place of safety in the United Kingdom. However, this was quickly replaced with uncertainty when it became clear that the state might not grant them the protection that, to them, was self-evidently necessary, and worse still, might force them to return to a difficult or dangerous situation in their country of origin.
4.2 At the time of the research, an applicant entered the asylum process by lodging a claim for asylum with the UK Home Office. A screening interview was held with the aim of establishing the individual's identity, nationality and travel route, and determining their eligibility for state support. This was followed by a substantive interview conducted by a Home Office official to ascertain the content of the claim. A decision to either refuse or grant protection was communicated to the applicant in writing. In the case of a refusal, the applicant had the right to lodge an appeal which was heard by the Asylum and Immigration Tribunal (AIT). This appeal could then be allowed or refused, in which case there could be the possibility of further appeal. It was the role of decision-makers to determine whether the claim was 'credible'. In contrast to Beck's (1992) risk society, in which citizens are all presented as risk experts, asylum applicants in this system were subject to the assessments of others. These assessments were made despite significant evidential uncertainty concerning the facts of claims because so little documentary evidence travels with the applicant to the UK (Thomas 2006: 8).
4.3 From the outset, the asylum applicants involved in this research experienced a profound knowledge deficit in relation to this legal-bureaucratic process. As Good notes, the language employed by legal professionals and bureaucrats in refusal letters, legal counsel and appeal hearings is almost certainly unintelligible to the asylum applicant (2007: 112), as it surely is to most lay persons. Visits by the researcher to the homes of the research participants would often involve hours of mulling over documentation, including letters from the Home Office, solicitors and the AIT; articles and reports which could be used as evidence to substantiate claims; and information about rights and regulations regarding housing, work, health care and education. They had little access to information about the asylum categories, legal concepts, case law and human rights discussions in relation to which their cases were being assessed (cf. Shuman & Bohmer 2004: 398; Ordóñez 2008). Correspondence from the Home Office, the AIT and solicitors was often sporadic, sometimes because there was nothing to report, and at other times because of administrative errors. When people did not receive regular updates from these parties, they expressed worry about the status and progress of their cases. As an Algerian woman, Manal, said of the asylum process, 'you don't have full information. You are engaged in something and you don't know what it is'.
Mistrust in interactions with decision-makers and legal professionals5.1 Trust is central to the experience of uncertainty. For asylum applicants mistrust permeated all stages of 'the refugee cycle', from experiences of persecution, to dealings with agents who organised travel documents and routes, to interactions with state officials in the UK and even the solicitors representing them (cf. Hynes 2003).
5.2 Interactions with asylum decision-makers in the UK brought into question what Giddens (Beck et al.1994, Giddens 1998) termed 'abstract' trust: a belief in the intention, ability and obligation of an expert or institution to perform the function that they are supposed to (Edwards et al. 2006: 5.3). Two women who shared the same solicitor specifically spoke of their mistrust of the firm tasked with representing them. Meetings between the women and their solicitor were observed as part of the research. As the solicitor shuffled through the case paperwork, he asked questions which both women later said he would not have needed to ask had he been familiar with their cases. Both had already lost appeals when represented by the firm and both had heard from other asylum applicants that the firm lacked expertise. One woman had been passed between three solicitors (because her primary solicitor could not be present at all meetings) and both had been represented at appeal by a solicitor they had never previously met. One woman expressed a feeling of having been let down by her solicitor:
my lawyer needs to have faith in me and present my case well, be on my side…You can't talk in the court, you can't respond when the Home Office attack you unless your lawyer gives you the chance. Last time my lawyer didn't defend me. When the judge asked if he wanted to respond, he said 'I have nothing to add'. I felt so let down (…) I just felt powerless.Edwards et al. (2006) have shown in their study of people's use of interpreters in the UK that the embodiment of trust requires that the service provider who is relied upon is familiar and demonstrates professional skills, expertise and adherence to professional codes of conduct. Likewise, in the case of the asylum seeking women in the present study, it was difficult for them to place their trust in others they hardly knew, who did not display what they regarded as signs of competence and expertise (Giddens 1990). The fact that they were dependent on these others exacerbated their state of uncertainty about how their appeal hearings would progress.
5.3 While officials were mistrusted, they were also thought to be mistrusting. A universally held view was that Home Office officials and appeal adjudicators were summarily suspicious of asylum applicants' intentions and disbelieving of their accounts. As Manal said with exasperation, 'Immigration are very good at jumping on mistakes. They just look [at] any gap you have left [and]…they jump on it'. Noor referred to the disbelief of decision-makers when she asked in frustration one day 'What can you do to make them believe you? They find a way to refuse everything you say'. Mistrust, then, arises from both the circumstances of seeking asylum and specific interactions with others who possess the power to assist the individual in securing protection. Mutual mistrust creates a perpetual, conscious state of suspicion and uncertainty in terms of the outcome of interactions (Daniel & Knudsen 1995).
The perception of arbitrary decision-making6.1 A related commonly expressed view was that decisions were not reached through an impartial and rigorous consideration of 'the facts' of the case, but were rather informed by the decision-makers' personal character and prejudices. As a result, the law did not offer the type of certainty with which it is often associated and for which reason it is often appealed to (Richards forthcoming).
6.2 Karim, an educated Sudanese man, accounted for the negative determination of his first appeal by referring to the 'racist judge'. He said 'everyone knows her because she's tough and a racist. If you go to court and you see the name of that judge on your case, you will be very upset'. When asked what he thought would be the outcome of his most recent appeal, he said 'I don't know. I have all the evidence to show that I'm a Refugee. If the Tribunal gives me the Refugee Status or if it doesn't depends on the judge on the day'.
6.3 At her appeal hearing, Noor scrutinised the photographs of the AIT staff which hung on the waiting area wall, believing them all to be adjudicators. After consideration, she pointed and said 'I would like to choose that one, because she looks the nicest. Maybe she would give me my Status', thus imputing character traits which would make it more likely that the judge would rule in her favour. This perception was reinforced by some of the advice given by legal professionals, as observed during fieldwork. Noor's solicitor told her that she had been allocated a 'good, moderate judge' on the day of her appeal hearing. Another solicitor advised his young female client to wear makeup and smart clothing as this was deemed more likely to win the adjudicator's favour. In her study of Salvadoran refugees' attempts to achieve legal status in the US, Coutin (2000: 101) similarly found that legal advocates gave the message to their clients that 'there are good judges and bad judges':
such depictions of justice as at least in part a matter of luck suggest that law is arbitrary, that there is some room for play within the system, but that the conditions that determine this play […] are beyond immigrants' control.This combination of belief in and acknowledgement from professionals of subjective elements in the legal process served to present the process as open to chance, reducing the sense of control the individual felt over the outcome and thereby magnifying their state of uncertainty.
Waiting for decisions: attempts to predict the future7.1 The research participants waited for many years in the asylum process. Waiting involves an orientation to the future and the promise of the event-to-come (Bissell 2007: 282): in this case, developments in, and a final outcome on, the asylum claim. However, the asylum applicants faced obstacles to predicting both when an outcome would be delivered and what it would be. This is because the Home Office and the AIT provided no formal information concerning the expediency of decision-making, and applicants had no past experience from which they could make reliable predictions of what would happen in the future (Lingis in Zournazi 2002; Crapanzano 1986). The process of refusal and appeal extended for years, as the system took its time and people slowly worked through the legal options available to them. At the time of the research, some had exhausted all appeal rights and waited for the Home Office to try to remove them; for new evidence to come to light in support of their claims; or for a government amnesty. Their waiting was therefore profoundly uncertain and temporally open-ended (Brekke 2004). They habitually drew on the experiences of others - what Beck (1992: 72) refers to as 'second-hand non-experience' - to try to ascertain what decision they would receive, and when. Unfortunately, others' experiences often represented a poor basis from which to draw comparisons.
7.2 People's accounts were focused on both their fears about what could happen and their inability to predict whether such events would happen. Their fears centred on being removed from their homes and separated from family members, being detained and finally deported. A Zimbabwean woman, Mudiwa, said:
…you end up asking yourself 'Why me?' and 'Is it going to work out? Is it not going to work out?' Yeah, so it's kind of depressing (…) I've tried just to occupy my thoughts with stuff like books or writing or whatever. But then you know, the thing is if something is really in your mind… you can't control it. I might be talking to you but I might be thinking: What's going to happen to me? (...) You can try to sleep but you don't, you stay awake coz you're thinking about what is going to happen. (…) There was this time when I couldn't even play with [my son]. He would come to me and I didn't have any energy at all to play with him coz my mind was just too busy thinking about the possibilities and what's going to happen and how I'm going to…Mudiwa's preoccupation with possible future scenarios appeared to be all-consuming at times, detrimentally affecting her ability to function in the present. Another Zimbabwean woman, Danisa, also described her inability to predict the future. Pointing to a pamphlet about Falun Gong practitioners with the title 'Tortured for their belief', she said:
They say torture. This is torture, waiting, not knowing. I don't know anything. I don't know what will happen to me tomorrow. I don't have a future. I just wake up everyday. I could go to the Home Office tomorrow and be sent back. I pray to God please, please, everyday. I go make friends. I talk to people like you so I don't have to think about it. The more you think, the more stressed you feel.
7.3 Manal, an Algerian woman who had exhausted her rights of appeal, highlighted her similarly stunted attempts to think about the future and of feeling trapped in the present when she stated:
Sometimes when I say to my husband, he always stop me to dream: 'Please, it's not time to dream. We don't know' (…) We don't plan. We think about tomorrow, what happens tomorrow. We will be here tomorrow? Sometimes I do shopping but I don't buy a lot because I thought maybe I don't eat them all. I will leave them in here. Maybe we will be deported…All three women felt that they were ignorant and powerless vis-a-vis their futures, and that they were waiting passively for things to happen to them. Their uncertainty did not entail a positive embracing of the unknown opportunities that might lie ahead, but rather a focus on the worst possible outcomes.
Coping with uncertainty8.1 Some studies have found that for asylum applicants, uncertainty about the future is married with a reluctance to invest in the present place and time. Fuglerud (1997) acknowledges that the state of permanent uncertainty resulting from an insecure immigration status caused many Sri Lankan Tamils in Norway to withdraw from participation in the wider society. Similarly, Atfield et al. (2007) found that for some asylum applicants in the UK, not knowing what might happen next made them feel that there was little point in making friends or investing in their futures here. In their study of Vietnamese refugees in a Hong Kong refugee camp, Chan & Loveridge (1987) found that the liminal state of waiting induced 'emotional hibernation' in which the individual refugee lost track of 'who s/he is, where s/he is, and why s/he is there'. Individuals often turned to the past and isolated themselves from the surrounding community, creating a 'cocoon' where it could be denied that anything had changed (ibid.: 750).
8.2 In contrast, most of the research participants in the present study demonstrated two strategies for coping: conjuring hope and taking action. Hope enabled people to identify and orient themselves to the imagined positive and thus desired future, in contrast to present unwanted circumstances they wished to change or a negative potential future they wished to avoid (Eliott & Olver 2007: 144). People routinely shared stories of the success of other applicants’ cases in an effort to identify evidence and bolster the view that they too would soon receive positive outcomes. Despite being restrained and powerless in many ways, particularly with regard to their asylum cases, people were engaged in emotional, social, material and financial forms of investment and action. A group of asylum-seeking women were one day talking about asylum applicants who, they claimed, had problems because they were 'worrying and thinking too much about the papers'. One woman from the Maghreb said: 'you just can't think about it because it drives you crazy. Thinking about it doesn't change anything, it just makes you feel worse. You got to find other things to do.' Regular ongoing involvement with and volunteering for community organisations was widespread and allowed people to: access a variety of leisure activities; develop familiarity with the local community; build social networks; and establish a regular routine. Most adults enrolled in part-time courses and were committed to developing their English and gaining vocational qualifications. People decorated their flats and purchased electrical goods such as televisions, DVD players, and computers. Some families opened bank accounts so that small sums of money could be saved. They were thus countering the ever-present uncertainty of their situations by attempting to generate a sense of security and homeliness in the present. In as much as was possible, they were living 'as if' they had control over their futures and a greater degree of certainty. As Jenkins et al. (2005: 11) point out, it is people's ability to 'obstinately create and find some continuity in their lives, in the face of hostile circumstances and their own vulnerability, [that is] perhaps the most significant story.'
CASE STUDY 2: Uncertain death at an unknown time: hastening one's death in order to bring an end to uncertainty9.1 Mortality, at least in the abstract, seems one of the least uncertain elements of human existence, hence the expression, attributed to Benjamin Franklin, that 'the only things which are certain in life are death and taxes.' Rather, what is more likely to induce a state of uncertainty in the approach to death is not knowing what kind of death one is likely to face or when one is likely to face it. In their study of dying hospital patients, Glaser and Strauss (1968) identified four types of 'death expectations': (1) certain death at a known time; (2) certain death at unknown time; (3) uncertain death but at a known time when certainty will be established; and (4) uncertain death at an unknown time. In this case study, it is the fourth type of death expectation which people face: uncertain death at an unknown time.
9.2 Although scientific advances have dispelled many of the uncertainties regarding disease aetiology, and multiple and varied treatment options exist for many illnesses, doctors continue to struggle to diagnose or to predict the trajectory of many medical conditions (Fox 2000). For the individuals whose stories are described here, heightened uncertainty resulted from an inability to predict the rate or effects of their illness trajectory, or their ability to compensate for, or to adapt to, a worsening state of health. As others have shown, living with chronic illness prompts continual questions about recurrence or exacerbation (Mishel 1999) and is known to disrupt the structures of everyday life and the forms of knowledge which underpin them, often causing 'biographical disruption' (Bury 1982).
9.3 As a type of death, the one chosen at a Swiss right-to-die organisation offers certainty in many respects: it is located at a specific time and place (a person is given an appointed time to arrive at the apartment where the lethal dose is self-administered); it is foolproof (the sodium pentobarbital which is ingested is guaranteed to kill); and it is painless (it induces a deep coma after five minutes and the patient dies after 30 minutes). Knowledge of the possibility of this type of guaranteed death offered the people in this study the assurance they actively sought at a time when they felt they had little control over their illness trajectory and little trust in the medical establishment's ability to ameliorate their suffering. In addition, securing the 'green light' from Dignitas in itself seemed to provide comfort to those who feared the unknown aspects of waiting for 'natural' death. It acted as a form of insurance, arming people against ill fortune and helping them to discipline the future (Ewald 1991: 207).
9.4 Requests for a medically hastened death come from a very small proportion of people who face life-limiting or chronic illness. Even fewer people make the journey to Dignitas. In May 2013 it was reported that 33 Britons had died at Dignitas in 2012, pushing the overall total of British deaths at Dignitas 'close to' 250 (Stevens 2013). The small proportion of people who choose to make their death certain through this artificial procurement suggests that it is an 'extraordinary' rather than an 'ordinary' response to the uncertainties of living with chronic or life-limiting illness. The limited appeal of assisted suicide is often thought to be due to an innate human instinct towards corporeal self-preservation (Hobbes 1971: 116-7). Another reason for its limited appeal is likely to be how far it is socially sanctioned. In the UK, for example, surveys (Park & Clery 2008) have consistently shown that while around 80% of people support the idea of a doctor assisting a terminally ill person to die, far fewer (around 45%) support the practice if the person's illness is not terminal, or if the help comes from a relative or by their own hand.
9.5 A third reason that assisted suicide is thought to appeal to such small numbers of people is that intentionally hastening one's death demonstrates the loss or end of hope, and this is often pathologised and associated with depression, suicidal ideation or sociopathic disorders (Farran et al. 1995: 38). The dominant medical construal of hope centres on the possibility of cure or at least remission and delayed death (Eliott & Olver 2007; Good et al. 1990). Medical professionals, who are seen as responsible for and capable of providing treatments aimed at cure, have the power both to conjure and to dispel hope as well as to give it legitimacy (Christakis 1999). Hope can therefore function to encourage patient participation in or compliance with a medical regime (Eliott & Olver 2007).
9.6 However, as we attempt to show, it is not just a simple equation of: no hope equals death (Eliott & Olver 2007: 142). In actual fact, the drive to gain the 'green light' from Dignitas offered people a different object towards which they could direct their hope. As Morse & Penrod (1999: 148) state, while the outcome is still uncertain, hope is engendered when a goal and a path towards achieving that goal are identified.
Sara: seeking an insurance policy in the face of medical uncertainty10.1 Sara was interviewed for approximately one hour over the telephone. It was not possible to conduct the interview in person because she had hidden the fact that she had applied to Dignitas from her husband.
10.2 Sara was 51 when she sustained a spinal cord injury as a result of a fall. She underwent three operations on her spine to try to repair the damage but none was successful. After the first operation she contracted spinal meningitis which worsened her symptoms dramatically. Sara spoke of the unremitting pain that she had been living with for the two years since the accident: 'it feels like I am being electrocuted all the time' and 'it's like being tortured'. She described how the first thing she did when she woke up in the morning was take morphine and that the only time she was free of pain was in her dreams. In this way, her pain was both constant and certain. Her movements were restricted to getting from the bedroom to the toilet and back and carers came to assist her every day. Sara was married but had no children. After the failure of the first operation and its complications, Sara applied to become a member of Dignitas. She subsequently applied for permission to end her life at the organisation. She considered Dignitas a preferable option to procuring the means to take her own life in the UK because it would make her death, in her words, 'civilised and certain'.
10.3 Sara's initial application to die at Dignitas was rejected on the grounds that she had not explored all the medical options available. However, after two further unsuccessful operations she applied again and was given the 'green light'. She said this news and the chance it gave her to bring an end to her chronic pain was 'the best gift I could have.'
10.4 When Sara requested a short medical report from her doctor for her application to Dignitas, he refused; telling her that he wanted 'nothing to do with it.' She felt that he had denied her any 'basic' compassion for her 'intolerable' situation:
They have never held my hand and said 'sorry things are like this' (…) They don't like people who are chronically sick because they are persistent and can never be cured.The hope which the 'gift' of Dignitas represented for Sara was not recognised by her doctor, and his refusal to legitimate this course of action was perhaps a factor in her decision to opt for a fourth operation. Despite a loss of trust in the medical profession and being unconvinced from past experiences of the efficacy of yet another operation, Sara continued to opt for a medical solution to a state of heightened uncertainty, all the while keeping Dignitas as an insurance policy.
Gwen: the uncertainty of 'slow dying'11.1 Gwen was formally interviewed twice in her home. Informal contact also took place at public events, in her home, and over the telephone.
11.2 Gwen was 87 when she travelled to Switzerland to die. For many years, she had been living with the effects of osteoarthritis, an illness characterised by remissions and exacerbations (Mishel 1990: 270): 'I find it extremely painful to do anything', she said. She feared a prolonged period of increasing disablement or what she called 'slow dying', accompanied by a growing dependency on others: 'My children would look after me, they are very kind children. But it doesn't mean that I would want them to.' Gwen likened old age to a car running down. She said that she felt her own body was 'packing in' on her and expressed a preference for a 'sudden death'. She said she didn't see anything to be gained from pain and suffering at the end of life:
Most people hang on to life. I can't understand it myself. I'm the exception. I've always wanted to be in control and I've always hated pain. I'm a terrible coward.
11.3 Gwen made every effort to reduce the uncertainty she was experiencing as a result of her inability to predict the likely trajectory of her ageing process. She executed an Advance Decision refusing all treatment apart from comfort care in the event of a stroke or a heart attack. She carried a laminated 'Do not attempt resuscitation' card in her purse and she had repeatedly informed her doctors of her wish not to be hospitalised in the event of the onset of acute illness. She had even managed (illegally) to procure a bottle of sodium pentobarbital (the lethal drug used by Dignitas to bring about death). All these self-directed actions can be considered pragmatic attempts to 'hedge against' (Dewey (1930) the risks she perceived in the ageing process and having her suffering prolonged through the application of unwanted biomedical interventions.
11.4 Gwen lacked trust in the medical professionals responsible for her care, unconvinced that they would act in her interests: 'it is unbelievably difficult to ensure you are going to get a comfortable death.' Gwen's mistrust was so pervasive, in fact, that at one point she spoke of having 'Do Not Attempt Resuscitation' (DNAR) tattooed on her chest in the hope that, were she to end up in hospital and unable to communicate, her wishes might still be respected. Her mistrust was not without factual basis given official reports showing that cardiopulmonary resuscitation is often attempted despite patients having explicit DNAR orders in their medical notes (NCEPOD 2012).
11.5 Notwithstanding her possession of sodium pentobarbital, Gwen's state of heightened uncertainty persisted. She worried about being prevented from opening the bottle due to a stroke or an exacerbation of her arthritis. Had the drug passed its sell by date and lost its efficacy? The future took on overriding significance for Gwen, an aspect of living with a progressive disease which, according to Toombs (1995: 20), causes an individual to project into the future rather than live in the present. As her general health deteriorated and her arthritis became more painful, she decided to eliminate altogether the increasing risk of a bad death, and opt instead for an artificially induced death with the help of a Swiss right-to-die organisation. Only this brought a certain end to her daily preoccupation with her anticipated future suffering and the prospect of not having her wishes respected by the medical establishment.
Phillip: the uncertain path to Dignitas12.1 Phillip was interviewed once in his own home. Informal contact also occurred at public events over the course of the year preceding his death.
12.2 Phillip was 86 and lived with his wife. Like Gwen, Phillip was very aware of his body deteriorating with age and he was preoccupied with trying to anticipate the form his decline would take. Phillip was an émigré to Britain just before the outbreak of World War II. He had experienced a great deal of uncertainty at that time in his life, travelling overland from Poland with his older brother:
I was alive to see people who were 30, 35, 40 who were caught by the Gestapo and didn't get to live the full life that I have done. They were caught up in the wheels of what was happening at that time, which I was lucky enough to escape.
12.3 In his early eighties, Phillip developed prostate cancer and elected to have an operation to remove his prostate. However, he subsequently declined the option of chemotherapy. Like Gwen, he too wanted to resist excessive biotechnological interventions, and was also suspicious about whether medical professionals would act in accordance with his preferences: 'I always resist the argument that just because a person has a medical qualification they know better what is for my best advantage.' When he was interviewed, Phillip said that he wanted to go to Dignitas either if his cancer became worse, or if his mental faculties deteriorated further, which was becoming increasingly likely. He said that he was already experiencing vertigo, memory loss, and a feeling of disorientation. These were most likely the early stages of dementia. While in some respects the progressive nature of dementia lends it a predictable trajectory, Phillip's ability to cope with it, and its duration, caused him uncertainty.
12.4 In discussions with Phillip some months after this interview, he reported that increasing fears about the acceleration of his mental deterioration had persuaded him to try to secure a 'green light' from Dignitas. However, his application had been declined because his cancer was now in remission and the organisation did not accept people without proof of mental capacity. Phillip appeared distressed by this news. A course of action which he had taken in order to remedy the uncertainty of his symptoms was no longer itself certain.
12.5 Phillip was determined not to be deflected from the one outcome which he thought would give him certainty in terms of the quality of his death. His hope resided in the identification of a goal (an assisted suicide) which, ironically perhaps, enabled him to envisage a future as he directed actions towards that goal (Morse & Penrod 1999). Phillip had heard about another Swiss right-to-die organisation which gave assistance to non-nationals. This time he needed to submit psychiatric reports. He visited many psychiatrists in different parts of the country and, through sheer dogged persistence, found one who was sympathetic to his situation and was willing to write him a carefully balanced report confirming his mental capacity while at the same time diagnosing early stage dementia. Two years after first contemplating an assisted suicide, Phillip travelled to another right-to-die organisation in Switzerland to end his own life.
Hedging through action to bring an end to uncertainty13.1 These three accounts of individuals' lives show different aspects of the process by which people with chronic or life-limiting illness make the decision to travel to Switzerland for help to die. While one could argue that there are other reasons for a person wanting to hasten their own death (not wanting to become a burden to others, being depressed etc), fear of an uncertain future, including the potential for unrelieved pain, remains a commonly reported reason (Hudson et al. 2006).
13.2 The heightened uncertainty experienced by Sara, Gwen and Phillip stemmed from a lack of trust in their bodies not to cause them pain and suffering in the future, coupled with a lack of trust in the medical establishment to either recognise and ease their suffering or act in accordance with their end-of-life preferences. For Sara, her pain was in fact predictable in that she experienced it constantly. Instead, her uncertainty arose from not knowing whether her pain could ever be cured and how long she could continue to endure it. Although Dignitas represented one avenue of action, further surgical operations represented another. At the time the research was undertaken, Sara had opted for the latter, a course of action which was in accord with the dominant medical construal of hope (Eliott & Olver 2007; Good et al. 1990).
13.3 In contrast, both Gwen and Phillip eventually determined that medical science held no promise for them in terms of relief of their present or anticipated future suffering. Both reached a 'tipping point' along their disease trajectory when they felt that further deterioration had become inevitable, and this was something they were unwilling to endure. Gwen took many ameliorative actions, none of which successfully eased her uncertainty, prior to her final act of travelling to Switzerland. Phillip, on the other hand, while convinced that an assisted suicide was the certain end he hoped for, experienced uncertainty about whether or not his application would be accepted, causing him further unease.
13.4 Penrod (2001: 241) argues that the experience of event focused uncertainty is mediated by feelings of confidence and control: 'confidence is the perception of being able to handle the uncertain event, while control is the perception of being able to influence the outcome.' Both feelings help a person to reduce or manage the uncertainty they experience. For the people in this case study, travelling to Switzerland for help to end their own life was a goal which, through their own determined efforts, they could move towards. This is undoubtedly a hedging strategy for maximising control. It enabled them to become less preoccupied with present suffering and to envisage a future end to suffering; an end which they felt would preserve some of the essential character or quality of their lives.
Discussion14.1 In both of our case studies we have treated heightened uncertainty as a state of being, the opposite of the condition which Giddens (1990: 92) calls 'ontological security', the confidence people have in 'the constancy of the surrounding social and material environments of action'. Heightened uncertainty was experienced by our participants as a prolonged cognitive and affective state (Loizos 2007: 293; Peteet 2005; Al-Rasheed 1994: 209) caused by an inability to predict or foresee which future events and states of being were likely to eventuate from those which were deemed possible. Both sets of individuals were unsettled and preoccupied by the perceived high probability of a negative outcome: deportation or a continuation or exacerbation of suffering resulting from chronic illness. The asylum applicants described their state of uncertainty with reference to metaphors of imprisonment and torture, and conveyed a sense of paralysis and exhaustion at their futures being unpredictable and largely determined by unknown decision-makers. The people trying to secure their 'green light' from Dignitas spoke of their distress about not knowing how they would be able to cope with their illness tomorrow, or in a year's time.
14.2 A state of heightened uncertainty arose for both groups due to fundamental doubts about the future integrity and well-being of their body and self, and, in the case of asylum applicants, family members and dependants. Uncertainty in these contexts was not experienced as a vague and open-ended existential condition (Barbier 2011; Bauman 1997, 2000; Gardner 2011; Jenkins et al. 2005) but rather existed within specific parameters (Whyte 1997: 19) and with an acute awareness of what possibly or probably would eventuate. This confirms Taylor-Gooby's (2005) argument that people's uncertainty is influenced more by specific factors such as a person's status or resources than it is by a generalised 'new consciousness' of risk.
14.3 In both cases, uncertainty was not a static, but rather a dynamic state (Penrod 2001: 241), which people could move into and out of. In the case of people seeking to end the uncertainty of chronic or life-limiting illness, Dignitas represented a goal towards which intentional action could be directed, offering them hope (Morse & Penrod 1999) and potentially a departure from a state of uncertainty. For the asylum applicants, acting to acquire information to remedy their knowledge deficit, albeit often through second-hand non-experience (Beck 1992: 72), was a way of fostering hope in a desirable future free from the threat of deportation. For both groups, the object of their hope was not just to achieve certainty, but to achieve the best outcome possible given their circumstances.
14.4 In both case studies, the power of state employees - Home Office officials or medical professionals - was central to participants' perception of their situation. Home Office bureaucrats and lawyers largely determined the knowledge which was made available to the asylum applicants and on which they based their predictions. Bourdieu (1999: 228) states that:
absolute power is the power to make oneself unpredictable and deny other people any reasonable anticipation, to place them in total uncertainty by offering no scope to their capacity to predict.
14.5 While he concedes that this is an extreme form of power, it nonetheless highlights the kind of power exercised through the asylum determinations process, where a lack of knowledge of legal process and the apparent subjective and arbitrary nature of the decision-making process left the applicants unable to reasonably predict outcomes. By contrast, in the case of participants who were living with chronic or life-limiting illness, the medical professionals with whom they came into contact held the power, not so much to make themselves unpredictable but rather to confer legitimacy on participants' suffering and inspire confidence that they would act in accordance with participants' stated preferences. As O'Neill (2002: 17) identifies, the relationship between doctor and patient can no longer be categorised as a one-to-one 'disinterested, long-lasting, intimate, and trusting' relationship. Instead, it is a relationship between a patient and a complex organisation staffed by many professionals, and is thereby constrained, formalised and regulated in ways that can erode patients' reason for trusting (O'Neill 2002: 39).
14.6 For both sets of individuals, trust in these powerful 'experts' or decision-makers was low. As other commentators have highlighted (Edwards et al. 2006), trust mediates uncertainty to the extent that in situations where full knowledge is lacking, trust can sustain a person's confidence that others will act in a way which is predictable and which adheres to the rules (O'Neill 2002: 13). The fact that our participants actively mistrusted the experts in charge of their case/care served instead to heighten their state of uncertainty.
14.7 This mistrust of experts relates to Beck's (1992) theorising of the 'risk society', in which experts are no longer deemed to have a monopoly on making rational judgements or predictions. Instead, people are expected, through their 'reflexive politicisation' (Beck 1992: 77), to be able to assess and manage their own risks and revise the knowledge which has been made available to them. For the people who wanted to bring an end to their uncertain illness trajectories, their 'reflexive politicisation' took the form of applying to Swiss right-to-die organisations. Gwen and Phillip, unlike Sara, resisted the need for professional legitimisation of their demands and opted for a death outside of the medical model. As Beck (1992: 59) argues, because science is the originator of many of the risks we face - in this case the risk of being subject to unwanted biotechnological interventions at the end of life - it is no longer able or trusted to react appropriately to mitigate those risks. Both Gwen and Phillip abandoned any residual belief they had that the medical establishment would be able to limit their exposure to a 'bad death' and elected instead to undertake a particular course of action, one of the few that was available to them. These acts stand in marked contrast with our first case study, in which the asylum applicants, while aware of the risks to which they were exposed, had even fewer means available to actively avoid them, bar going 'underground' or moving to another jurisdiction, options which were perceived to entail further uncertainty. 'Risk consciousness' was a cause of anxiety, owing to the lack of choices available to them when interacting with a powerful state bureaucracy. While they did seek to gain knowledge of the system by finding out about other people's cases and about judges' personal traits, ultimately they remained subject to the assessments of others and lacked the substantive knowledge required to become their own 'risk managers'.
14.8 However, despite the limited scope for action, the asylum applicants in this study did manage to reduce their uncertainty by electing to live 'as if' they had a certain future in the UK. Like the participants in the second case study, they too saw action as a remedy for uncertainty: 'You got to find other things to do,' such as home-making, participating in community projects or enrolling in courses. Hoping for the positive outcome of settlement in the UK and acting 'as if' this had been achieved was a coping strategy the asylum applicants had available to them which enhanced their perception of control over their futures. Similarly, the hope which was engendered through the identification of the goal of Dignitas - 'the best gift I could have' - gave the chronically ill people who participated in this study the perception of control over their future bodily deterioration and death. Both of these types of action meant that participants' negative preoccupation with an unknown future could cede to a more concrete vision of an alternative future; a future over which they had more control. For the Dignitas applicants, it was perhaps ironic that the action which enabled them to hope and to envisage an alternative future in fact entailed a foreshortening of that future through a hastening of their death.
15.1 Since the global financial crash of 2007 the term 'uncertainty' has become ubiquitous, along with grand claims that we are living in a uniquely uncertain historical era (cf. Gardner 2011). In the sociological literature, it is often this same global or generalised form of uncertainty which is identified as an effect of grand narratives and truth claims becoming destabilised in the late modern era. In this article, we looked instead at how uncertainty is experienced as a particular ontological state induced by specific life events or situations (Penrod 2001: 241), and we label this a 'heightened state of uncertainty'. We selected for our case studies two groups of individuals who are often acknowledged in the academic literature as being particularly susceptible to uncertainty because of their inability to predict their future well-being: asylum applicants (cf. Colson 2003; Loizos 2007; Peteet 2005) and people with chronic or life-limiting illness (cf. Becker & Kaufman 1995; Mishel 1990, 1999; Heyman & Henriksen 1998). As we have sought to show, these case studies bear key similarities: the magnitude of the risks faced (deportation, protracted suffering, a bad death); the limited scope for action available to them to remedy their state of uncertainty; and their dependence on professionals whom they did not trust. For asylum applicants, lack of knowledge about the legal-bureaucratic process and the seemingly arbitrary nature of the decision-making process left them with an inability to clearly predict which of a number of anticipated outcomes would eventuate, and when. For the individuals contemplating hastening their death in Switzerland, it was their pain and bodily deterioration which seemed arbitrary to them and they were unable to predict whether they would feel the same, or worse, tomorrow. For both sets of individuals, the future became amplified in importance. Unlike other studies (Toombs 1995; Chan & Loveridge 1987), however, we suggest that our participants' condition of heightened uncertainty did not paralyse them in the present. While both sets of individuals had few actions available to them, they worked pragmatically within the limited means at their disposal to minimise their uncertainty and increase their perception of control, which could be taken as a signal of the individual capacity and potential to deal with situations of crisis (Jenkins et al. 2005: 10). However, the acts taken by our participants to relieve the suffering caused by their heightened state of uncertainty – living 'as if' one had leave to remain or travelling to Switzerland for help to die - should not be interpreted as a sign of the 'opportunity' which uncertainty offers for people to creatively seek alternatives (Dewey 1930), but rather as indicative of the desperation of those who feel powerless to control their futures.
Notes1'Global Risks Are Rising, But There Is a Path to Recovery': Remarks at Jackson Hole, 27 August, 2011 http://www.imf.org/external/np/speeches/2011/082711.htm
2In this politically contentious debate it is difficult to find a neutral, purely descriptive term so we have used the term ‘right-to-die organisation’ because that is how Dignitas describes itself.
3The Home Office is the government department responsible for immigration and asylum affairs in the UK.
4Once a person has submitted the necessary documentation and is deemed to fulfil all the criteria, Dignitas notifies them that the next stage is to meet with a Swiss doctor who will assess them in person before writing them a lethal prescription. This is known as the provisional 'green light'.
5Subsequent contact and visits were also maintained during the following years.
6The Association of Social Anthropologists Ethical Guidelines for Good Research Practice.
7In this article, pseudonyms have been used for all participants in both case studies.
8The position of those who 'assist' a person in making the arrangements to travel to Dignitas and/or accompany them to Switzerland has been clarified since the publication of the Crown Prosecution Service's Policy for Prosecutors in Respect of Cases of Encouraging or Assisting Suicide (2010). This policy outlines the factors which the Director of Public Prosecutions is likely to take into account when determining whether or not to prosecute an 'assistor' (for an analysis of this policy, see Richards 2014).
9Statistics from the US state of Oregon where physician-assisted suicide is legal, for example, suggest that about 1% of dying patients will make a specific request for physician-assisted suicide and of these patients, approximately 1 in 10 (0.1% of all dying patients) will die by physician-assisted suicide (Hedberg et al. 2002).
10We use the term ‘assisted suicide’ throughout the article, as opposed to ‘assisted dying’. The reason for this distinction is that, according to Dignity in Dying the UK’s main pro-legalisation organisation, ‘assisted dying’ is defined as assisting a terminally ill, mentally competent adult to shorten the dying process at their request, while ‘assisted suicide’ is where the person asking for help is chronically, but not terminally ill. While this terminological distinction is not widely adhered to by those in the right-to-die movement, we regard it as a useful distinction to make. Dignitas helps people who are not terminally ill and the three individuals discussed in this paper were not terminally ill. For this reason we use the term ‘assisted suicide’.
11The 'Advance Decision' provision within the Mental Capacity Act 2005 gives citizens in England and Wales the right to refuse life-prolonging treatment in advance of the onset of mental incapacity.
12 An older woman named Joy Tomkins recently made the national news when she had a similar tattoo made: http://www.dailymail.co.uk/news/article-2034647/Joy-Tomkins-81-resuscitate-tattoo-chest-PTO-inked-back.html.
AcknowledgementsWe would like to thank all of the participants who took part in the two projects discussed in this article, and the intermediaries who introduced us to participants. We are grateful for the constructive feedback of two anonymous reviewers.
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