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The death of the right-to-die campaigners (Respond to this article at http://www.therai.org.uk/at/debate)
Abstract
The ‘right-to-die’ or assisted suicide debate in the UK has recently been dominated by high-profile litigation which has brought to public attention stories of individual suffering. The most recent case is that of Tony Nicklinson who, as a result of his permanent and total paralysis which he said made his life ‘intolerable’, wanted the courts to allow a doctor to end his life. Only six days after a Judicial Review refused his request, Tony died of ‘natural’ causes. This article compares the presentation by the media of Tony's requested death with his actual death and discusses what this reveals more generally about the way in which the right-to-die debate is presented to the public. It argues that in a politicised debate in which the personal stories of the disabled-dying are given airtime because of their didactic or symbolic potential, actual death becomes less important than the rights-rhetoric surrounding death.
... It was necessary to communicate his pain, to make it visible, in order to legitimise a form of suffering that could bring about an effective caring response. This process of recognition invests suffering with political, social and moral meaning, and it can often take place in diverse sites, such as medicine and law (Harper et al. 2015, 21-2) or the media (Richards 2014(Richards , 2017. When Dr Wilson first told me about Paul Lamb, she was rather upset about the outcome of a court case brought by him against the UK government. ...
... His initial involvement with the court case, however, was incidental. It was Tony Nicklinson, a British citizen with locked-in syndrome, who initiated the case at the High Court to challenge the law on assisted suicide and murder, which did not recognise the possibility of euthanasia (Richards 2014;Ward 2015). After Nicklinson's case failed, he refused nutrition and died six days after the High Court ruling. ...
By portraying the circumstances of people living with chronic conditions in radically different contexts, from Alzheimer’s patients in the UK to homeless people with psychiatric disorders in India, Managing Chronicity in Unequal States offers glimpses of what dealing with medically complex conditions in stratified societies means. While in some places the state regulates and intrudes on the most intimate aspects of chronic living, in others it is utterly and criminally absent. Either way, it is a present/absent actor that deeply conditions people’s opportunities and strategies of care.
This book explores how individuals, groups and communities navigate uncertain and unequal healthcare systems, in which inherent moral judgements on human worth have long-lasting effects on people’s wellbeing. This is key reading for anyone wishing to deconstruct the issues at stake when analysing how care and chronicity are entangled with multiple institutional, economic, and other circumstantial factors. How people access the available informal and formal resources as well as how they react to official diagnoses and decisions are important facets of the management of chronicity.
In the arena of care, people with chronic conditions find themselves negotiating restrictions and handling issues of power and (inter)dependency in relationships of inequality and proximity. This is particularly relevant in current times, when care has given in to the lure of the market, and the possibility of living a long and fulfilling life has been drastically reduced, transformed into a ‘reward’ for the few who have been deemed worthy of it.
... Casos icónicos como el de Karen Quinlan, cuyos padres reclamaron a la justicia el retiro de soporte vital que los médicos tratantes se negaban a realizar a mediados de los años 70 en los Estados Unidos, pusieron las decisiones acerca de cuándo prolongar o no la vida de una persona por medios tecnológicos por primera vez bajo el escrutinio público (Rothman 1991). Desde entonces otros casos resonantes continuaron enarbolando los derechos de los pacientes terminales a rechazar tratamiento o a recibir asistencia para finalizar su vida, en los que los medios de comunicación han tenido un gran protagonismo (McInerney 2000;Menezes, 2011;Richards 2014Richards , 2015. En Argentina las controversias en torno a la gestión médica del final de la vida adquirieron gran visibilidad en años recientes, a partir de una serie de casos controversiales que pusieron en la agenda de discusión la forma en que la muerte y el morir eran atendidos en ámbitos médicos, abriendo un debate que culminó con el tratamiento parlamentario y la sanción de la llamada ley de "muerte digna" en el Congreso Nacional en mayo de 2012 (Alonso et al., 2017). ...
... Este es un aspecto común en los debates sobre los derechos de los pacientes sobre las decisiones en el final de la vida en diferentes países, a menudo marcado por figuras de alto perfil que buscan provocar intencionalmente discusiones para generar cambios en las políticas (McInerney, 2006). En el Reino Unido, por ejemplo, buena parte del debate público sobre el final de la vida se centra en casos controversiales, y a las decisiones de una litigación estratégica por parte de pacientes y/o familiares que buscan así avances en la regulación de la eutanasia y el suicidio asistido, y que utilizan a los medios para instrumentalizar sus reclamos y apelar a la simpatía del público por estas causas (Richards, 2012(Richards, , 2014. El foco en experiencias individuales puede ser visto como reflejo tanto de una tendencia a la construcción sensacionalista de los casos mediáticos, por el carácter noticiable de estos dramas personales y familiares, como también a una cobertura más emancipadora de las decisiones sobre decisiones en el final de la vida, al darle voz a los sujetos directamente afectados por la problemática (Van Brussel et al., 2014). ...
El objetivo de este artículo es analizar la cobertura periodística de los debates sobre “muerte digna” en la prensa escrita Argentina en el período 2011-2015, en ocasión de la discusión y aprobación de la llamada ley de “muerte digna” en el país. Se realizó un relevamiento de noticias en La Nación, Clarín y Página/12 y se conformó un corpus de 373 artículos periodísticos que fueron analizados a partir de un análisis cuantitativo y de análisis temático. En este artículo mostramos cómo la circulación de ideas en torno a la muerte digna se construye a partir de la preeminencia de tópicos legales y familiares, y el poco espacio de abordajes médicos y/o científicos; la centralidad de los estados vegetativos y de los daños neurológicos como condición de salud asociada a estas discusiones, motivada en parte por los casos que pusieron la temática en el ámbito público; el foco de la cobertura en casos emblemáticos y dramas particulares; y, por último, la casi nula referencia a temáticas como la eutanasia o el suicidio asistido en los debates, dominados por la limitación del esfuerzo terapéutico.
... The legal ruling in the US in 1976 that allowed Karen Quinlan's parents to disconnect her from the respirator that maintained her in a vegetative state first brought the issue to international attention. Other cases such as those of Nancy Cruzan and Terri Schiavo in the US, Vincent Humbert and Chantal Sébire in France and Dianne Terry and Tony Nicklinson in the UK continued to stir up the debate about the rights of terminally ill patients (Rothman 1991;Dworkin 1993;Richards 2014Richards , 2015. ...
In this chapter we describe and analyse the public debates on death with dignity in Argentina, from the first attempts to regulate the rights of terminally ill patients to the political process that resulted in the ‘death with dignity’ Act. Based on documentary sources and sociology of public problems approach we discuss the process of legal change regarding treatment refusal at the end of life. After a short sketch of the history of the debates on death with dignity, we discuss the social and political factors that led to a legal change regarding death with dignity. We posit that the political context and how the debate on end-of-life care was introduced into the public domain explain the legal changes and ethical concerns related to a death with dignity in Argentina.
... After Nicklinson's death in 2012, Brittany Maynard, a 29-year-old diagnosed with a terminal brain tumour, found internet fame when her campaign to have a physician-assisted suicide in California went viral. 12 The global interest in Maynard's story shows the international nature of this social movement and the way in which personal suffering becomes imbued, via the media, with political meaning (Richards, 2014). All forms of media, both old and new, now provide the main battleground for the right-to-die debate whose terms -assisted dying, suicide, euthanasia -and what they signify are being perpetually altered and contested. ...
At the time of writing the average UK funeral costs around £3,500 (Sunlife, 2014). While much is known about the ritual components of a funeral and their purpose (Holloway, 2007), the role of the funeral director in the event (Howarth, 1996) and the benefits associated with funeral participation (O’Rourke et al., 2011), very little is known about how individuals and families determine and plan for the financial costs associated with a funeral, and how they afford them. Moreover, compared with well-established areas of social policy, academic insight into state support for funerals is virtually non-existent. While funeral costs can be a potential source for tension within a family (see Corden et al., 2008), the most comprehensive studies of funeral costs and state provision to date have shown that there are considerable issues with the way in which the state administers its funds in this area (see Drakeford, 1998; Foster and Woodthorpe, 2013; Woodthorpe et al, 2013).
... After Nicklinson's death in 2012, Brittany Maynard, a 29-year-old diagnosed with a terminal brain tumour, found internet fame when her campaign to have a physician-assisted suicide in California went viral. 12 The global interest in Maynard's story shows the international nature of this social movement and the way in which personal suffering becomes imbued, via the media, with political meaning ( Richards, 2014). All forms of media, both old and new, now provide the main battleground for the right-to-die debate whose terms-assisted dying, suicide, euthanasia-and what they signify are being perpetually altered and contested. ...
The study of death has the capacity to bring together a considerable range of policy areas. How we handle dying, death and bereavement, as individuals, groups, organisations and even society, reflects values about our worth and contribution. It mirrors how we see ourselves and our own fragility (Kellehear, 2007). What is more, death shines a light on how we live our lives. Individuals’ experiences of death and the situation of those ‘left behind’ are the product of decisions made across a life course, not merely as one approaches death. While in some respects, given that death is a universal human experience, it may be seen as a great leveller. However, in other respects it is linked to individual characteristics and experiences. For instance, the age of death is linked to wider social policies which affect health, employment, income, participation and individuals’ overall quality of life. It is linked to social class (Howarth, 2007; Marmot, 2010), gender (Austad, 2006) and ethnicity (Holloway, 2007), all of which shape and contextualise people’s lives. History also plays a role in shaping communities and policies, which in turn impact on the resources and quality of services available to dying individuals and those close to them (Monroe et al., 2011). This is related to the prevailing political ideology and party in power, which has implications for rights and responsibilities, the extent to which support is provided by the state or the market, or indeed whether it is provided at all (Dwyer, 2010). Policy affects not only the way people near the end of life are supported but also the financial circumstances of those left behind (Grenier, 2012). As such, social policy has considerable implications for how death is experienced and our understanding of death in the modern world.
Can ethical choices outlive the people who make them? In order to explore this question, this article draws on ethnographic research on transnational assisted suicide to question afterlife implications of practices of un/naming, particularly the use of anonymisation and pseudonyms. Assisted suicide is organised around a specific politics of naming that animates its fight for social and political recognition but which contradicts anthropology’s once long-standing disposition towards anonymity as a form of protecting research participants. This dissonance creates a situation where one of anthropology’s main tools of protection risks jeopardising the political struggles and fight for recognition of the same people it seeks to protect. Against this background, this reflection argues that empirically researching death and dying requires an additional sensitivity to un/naming practices. Thus, I propose the notion of afterlife reverberations, that is, the affects and expectations that ripple in the aftermath of a research participant’s death from their research choices made in life.
Then I went to the school for librarians and publishers in B, and I was as far as in the third year when this fatal episode with my mother happened, when I actually knifed her to death, and then I spend five month in the prison, and afterwards I was transferred – after the prosecution was suspended on the grounds of insanity – I was transferred here to this institution and here I am for a year and a quarter and I am waiting for what is to come. Josef K 2008 Although it might seem that anyone addressing the notions of crime and insanity, treatment and punishment inevitably finds themselves on Foucaultian territory, my aim in this chapter is not a dialogue with the work of Michel Foucault (1965, 1977), whom I consider a historian of a specific culture of classical France. His studies on the logic and technologies of power certainly have wide resonance and have influenced the ways in which we conceptualise and understand the historicity of contemporary practices, in the areas of both medicine and jurisprudence. However, in this contribution I intend to complement his perspective ‘from above’ with the perspective ‘from within’ and my interest is twofold: first, to understand what it means to interpret specific transgressive acts within specific frameworks – in this case moral, medical, legal and religious; second, to examine assumptions about the nature of such seemingly transgressive acts that allow people to place them in such general categories. As Hans Georg Gadamer demonstrated, meaning is not a quality of a thing as such, but is always derived from its context (Gadamer 1994). In this sense, the interpretative context is constitutive of meaning. I am therefore interested in the law and medicine as a resource for the interpretation of human action and behaviour, and in their normative role in human affairs. These interpretations presuppose as well as constitute the moral dimensions of reality.
This entry discusses the anthropological study of death. It traces the history of this study from early engagements with funeral symbolism, through mourning and melancholia, to contemporary concerns with thanatology, biomedicine, organ harvesting, and euthanasia. The entry thus suggests that death continues to provide substance for the cutting edge of anthropology.
Resumen: El artículo examina la producción legislativa sobre derechos de los pacientes terminales en Argentina en dos momentos: los primeros intentos de regular los derechos en el final de la vida (1996) y la sanción de la ley de “muerte digna” en el Congreso Nacional (2011-2012). El análisis comparativo permite observar variaciones en torno a las personas y situaciones incluidas en la legislación, la forma en que se conceptualiza la autonomía y las intervenciones que se considera legítimo rechazar. El contexto político y la forma diferencial en que la “muerte digna” ingresó en la agenda legislativa en cada periodo determinaron la construcción pública del problema y con ello los alcances y el resultado de los debates.
Law and medicine can be caught in a tight embrace. They both play a central role in the politics of harm, making decisions regarding what counts as injury and what might be the most suitable forms of redress or remedy. But where do law and medicine converge and diverge in their responses to and understandings of harm and suffering? Using empirical case studies from Europe, the Americas and Africa, The Clinic and the Court brings together leading medical and legal anthropologists to explore this question.
This paper addresses the judicialization of end of life medical decision-making, as part of the advance of the justice system in the regulation of medical practice and the rise of recognition of patient autonomy. The article analyzes, from a sociological standpoint, legal decisions regarding treatment refusal at the end of life produced by the Argentine courts between 1975 and 2015. Based on a qualitative design, 38 sentences collected from jurisprudential databases using key terms were analyzed. First, judicialized cases during the period are described; these are characterized by a high proportion of claims presented by health institutions, a pro-treatment bias in the legal actions requested, and a high percentage of unnecessary litigation in the absence of conflicts or in situations that do not require court intervention. Second, legal and extralegal factors affecting the justiciability of decisions to refuse or withdraw medical treatments, such as changes in the law and processes of politicization of claims, are analyzed.
Rehabilitation is the official goal of the German penal system. As stated in the Criminal Legal Code, amended on 16 March 1976, rehabilitation aims ‘to enable prisoners to live in the future a life of social responsibility without illegalities; it should also serve to protect the general public from further criminal acts’. In pursuit of these ends, a 2002 federal law (which went into effect on 1 January 2003) mandates that individuals sentenced for sexual abuse to more than two years of imprisonment have not only a duty but also a right to Behandlung, therapy/treatment. Consequently, key to the rehabilitation of such offenders has become therapy, which is seen as the primary means for die Aufarbeitung der Tat, reckoning with the act or deed. Among those categorised as sexual criminals, child sex offenders encounter an additional demand in their rehabilitation. To reckon with the act means also to find a mode of relating to, and modifying, a set of assumptions about psychological predispositions and sexual identifications that construct them as ‘paedophiles’. In Foucauldian terms, the act risks making the offenders into a distinct ‘sexual species’ (Foucault 1978: 43). Definitions of paedophiles include a wide variety of intentions and behaviours, which vary considerably by time and place, as well as by the speech community to which any person belongs. As a working definition, I will follow popular use and construe a paedophile to be an individual with any sexual interest in children. In contemporary European legal systems, the criminalisation of paedophiles is generally restricted to people who have sexually engaged children or youth, in most cases up to the age of 18. In Germany, the legal age of consent (the right to ‘sexual self-determination’) is 14, but 16 for youths to have sex with an individual over 21. This chapter addresses not whether therapy is successful in the rehabilitation of paedophiles but how it can be and often is successful.
In medically advanced countries, voluntary euthanasia and assisted suicide are hotly debated issues across all strata of society. Legislation permitting the practice of hastening your own death with help from a third party has now been passed or is pending in a number of US states, Canada, Switzerland, Belgium, Luxembourg, and the Netherlands. Parliamentary bills which would legalise a form of assisted suicide were also debated by the UK and Scottish parliaments in 2015. The beliefs that people hold about the practice are hugely influenced by their own first-hand experiences of illness and death (Hendry et al., 2013; Judd and Seale, 2011), as much as by any pre-existing moral code stemming from religious and cultural teachings or otherwise. The social and legal sanctioning of voluntary euthanasia and assisted suicide may divide opinion, but the fact that so many people appear to hold and are prepared to vocalize strong opinions about an issue relating to death and dying is unusual, given that a number of social taboo which still operates to regulate discussions about the end of life more generally (Walter, 1991). In many ways, the high profile occupied by the voluntary euthanasia and assisted suicide debate has facilitated public discussion of broader issues to do with the ways in which people die in the twenty-first century.
Should assisted suicide be legalised? This is a topic of debate in the UK once again. The House of Lords and the Judiciary indicate that legislation must be enacted by the Government to make assisted suicide a reality. This article highlights some important historical cases involving assisted suicide, and explores the ethical, legal and professional issues assisted suicide presents for nurse prescribers.
Law and medicine can be caught in a tight embrace. They both play a central role in the politics of harm, making decisions regarding what counts as injury and what might be the most suitable forms of redress or remedy. But where do law and medicine converge and diverge in their responses to and understandings of harm and suffering? Using empirical case studies from Europe, the Americas and Africa, The Clinic and the Court brings together leading medical and legal anthropologists to explore this question.
Since the late 1960s torture has increasingly been understood as involving a distinct form of suffering. In 1976, for example, the European Court of Human Rights ruled that the use of forced standing, hooding, subjection to noise, deprivation of sleep and deprivation of food and drink by British security forces on Republican prisoners in Northern Ireland did not amount to torture because they did not ‘occasion suffering of the peculiar intensity and cruelty implied by the word torture’ Similarly, the 1984 UN Convention Against Torture, for example, defines torture as involving ‘severe pain or suffering, whether physical or mental’. Even more recently, when the George W. Bush administration was trying to provide legal cover for its treatment of prisoners in Guantanamo Bay, Abu Ghraib and Bagram, one of its lawyers infamously defined torture as an act that caused pain equivalent to major organ failure. In Britain, UK Border Agency Guidance states that in order to count as an Article 3 violation, the incident must ‘involve actual bodily injury or intense physical or mental suffering’ (UKBA no date, 3). As such, torture is widely seen as being distinguished from other types of ill-treatment by the amount of pain and suffering it causes. As a specific category of harm, the precise meanings and implications of the word ‘torture’ stand at the uneasy interface of law and clinical medicine. It is lawyers who have led the way, since the last third of the twentieth century, in defining what does and does not count as torture (Kelly 2012). Legal conventions, decisions and definitions have proliferated. However, given the focus on pain and suffering, clinicians – especially medical doctors but also psychologists and psychoanalysts – have increasingly become central to attempts to understand torture and its implications. In the early 1970s, there were no specialised centres that provided medical or psychotherapeutic care to torture survivors.
Social death denotes a loss of personhood. The concept of social death is engaged with in English end-of-life care policy that sees social death before physical death as a problem. Policy-makers posit that dying persons are likely to be subject to a social death prior to their physical death unless they play an active and aware role in planning their death, facilitated through communication and access to services. Such a view foregrounds a vision of agency and does not address Sudnow's critique of how care of the dying focuses on the body.
Two sociological views of death in modernity are currently dominant. They are that death is not acknowledged in public, and that a public discourse does exist, the discourse of medicine. The article criticises both these views in the light of how news media portray the extraordinary deaths of otherwise ordinary UK citizens. The news media focus in particular on the emotions of survivors - of considerable interest to British people unsure of proper grieving behaviour. When it comes to death, journalists and photographers are in the forefront of psychological `instruction' - something students of both death and the media have failed to notice, let alone research.
Law and medicine can be caught in a tight embrace. They both play a central role in the politics of harm, making decisions regarding what counts as injury and what might be the most suitable forms of redress or remedy. But where do law and medicine converge and diverge in their responses to and understandings of harm and suffering? Using empirical case studies from Europe, the Americas and Africa, The Clinic and the Court brings together leading medical and legal anthropologists to explore this question.
What value does death acquire when body organs are pledged for transplantation? Deaths may be made public by a stated desire to donate, and a matter of public debate precisely because the desire is denied. This essay explores two case studies from India of attempts to donate organs: one of a condemned prisoner, and the other of a former Marxist chief minister of West Bengal. One of these attempts was idealized and exalted, the other thwarted; both gave rise to considerable public conversation. We treat the public nature of these deathbed wishes as moral dramas, for at the heart of each is a quite wrenching contest over the donor’s soul—or its this-worldly equivalent, his legacy—that serves equally as an opportunity to reignite projects of social reform and (re)educate different social constituencies. We thus focus on the didactic functions of donation, where the principal issue at stake is the intention of the dying person to gift his or her organs. We ask, what does organ donation mean at the point of death? We argue that there is more at stake than just the possibilities of saving lives. Rather, these unfolding moral dramas become opportunities for, among other things, Brahminism to be rejected, superstition to be transcended, the values of a modernizing state to be reaffirmed, and a broad spectrum of civic virtues to be inculcated. Pledging one’s body when death is imminent and inevitable becomes the final chance to rewrite the course of a life, to make a worthy biographical statement, and to turn the intimately personal into something of public value. How does the dying donor speak? As murderer, Marxist—or more?
What value does death acquire when body organs are pledged for transplantation? Deaths may be made public by a stated desire to donate, and a matter of public debate precisely because the desire is denied. This essay explores two case studies from India of attempts to donate organs: one of a condemned prisoner, and the other of a former Marxist chief minister of West Bengal. One of these attempts was idealized and exalted, the other thwarted; both gave rise to considerable public conversation. We treat the public nature of these deathbed wishes as moral dramas, for at the heart of each is a quite wrenching contest over the donor's soul - or its this-worldly equivalent, his legacy - that serves equally as an opportunity to reignite projects of social reform and (re)educate different social constituencies. We thus focus on the didactic functions of donation, where the principal issue at stake is the intention of the dying person to gift his or her organs. We ask, what does organ donation mean at the point of death? We argue that there is more at stake than just the possibilities of saving lives. Rather, these unfolding moral dramas become opportunities for, among other things, Brahminism to be rejected, superstition to be transcended, the values of a modernizing state to be reaffirmed, and a broad spectrum of civic virtues to be inculcated. Pledging one's body when death is imminent and inevitable becomes the final chance to rewrite the course of a life, to make a worthy biographical statement, and to turn the intimately personal into something of public value. How does the dying donor speak? As murderer, Marxist - or more?
PUBLIC AND scholarly debates on legalizing physician-assisted suicide (PAS) and voluntary active euthanasia (VAE) have increased dramatically in recent years.1-5 These debates have highlighted a significant moral controversy between those who regard PAS and VAE as morally permissible and those who do not. Unfortunately, the adversarial nature of this controversy has led both sides to ignore an alternative that avoids moral controversy altogether and has fewer associated practical problems in its implementation. In this article, we suggest that educating chronically and terminally ill patients about the feasibility of patient refusal of hydration and nutrition (PRHN) can empower them to control their own destiny without requiring physicians to reject the taboos on PAS and VAE that have existed for millennia. To be feasible, this alternative requires confirmation of the preliminary scientific evidence that death by starvation and dehydration need not be accompanied by suffering.DEFINITIONS
Before proceeding, we will
“Public” life once meant that vital part one’s life outside the circle of family and close friends. Connecting with strangers in an emotionally satisfying way and yet remaining aloof from them was seen as the means by which the human animal was transformed into the social – the civilized – being. And the fullest flowering of that public life was realized in the 18th Century in the great capital cities of Europe.
Sennett shows how our lives today are bereft of the pleasures and reinforcements of this lost interchange with fellow citizens. He shows how, today, the stranger is a threatening figure; how silence and observation have become the only ways to experience public life, especially street life, without feeling overwhelmed ; how each person believes in the right, in public, to be left alone. And he makes clear how, because of the change in public life, private life becomes distorted as we of necessity focus more and more on ourselves, on increasingly narcissistic forms of intimacy and self-absorption. Because of this, our personalities cannot fully develop: we lack much of the ease, the spirit of play, the kind of discretion that would allow us real and pleasurable relationships with those whom we may never know intimately.
This essay reviews recent anthropological attention to the “beginnings” and “endings” of life. A large literature since the 1990s highlights the analytic trends and innovations that characterize anthropological attention to the cultural production of persons, the naturalization of life, and the emergence of new life forms. Part I of this essay outlines the coming-into-being, completion and attenuation of personhood and how life and death are attributed, contested, and enacted. Dominant themes include how connections are forged or severed between the living and the dead and the socio-politics of dead, dying, and decaying bodies. The culture of medicine is examined for its role in organizing and naming life and death. Part II is organized by the turn to biopolitical analyses stimulated by the work of Foucault. It encompasses the ways in which the biosciences and biotechnologies, along with state practices, govern forms of living and dying and new forms of life such as the stem cell, embryo, comatose...
This article is the second in a two-part series examining media depiction of individuals who are dying from cancer. The first focused on how television documentary film represents individuals with the disease; this second, and complementary, study explores the development and evolution of textual accounts. It begins by charting the history of auto/biographical books, based on the individual cancer experience, and locates the root of this form of document as far back as the Medieval era. It then draws on appropriate examples to conduct a comparison between models from the mid-nineteenth and late twentieth centuries. The paper argues that, although temporal shifts may appear to exert significant change, these differences are largely superficial, as detailed scrutiny of these texts suggests that the essence and needs of the core self remain unchanged. To afford a comprehensive understanding of why these texts continue to be written and sell well within an aggressive market, the paper presents extracts from interviews held with the author of one of these books, a journalist, the late John Diamond. Drawing upon these conversations as evidence, the paper concludes by suggesting that the socio-temporal conditions prevalent in present-day Western society still lack sufficient strength to countenance an open confrontation with the very real traumas involved in dying.
Abundant in books, on television, in film, on the internet, and in newspapers and magazines, in the twenty-first century death is hugely accessible. Within recent years, sociologists have responded to this visibility by examining death in the media, including its role and status in popular culture and ‘public mourning’, seen for example following the death of Diana, Princess of Wales in 1997. This article considers a third strand of death in the media that requires sociological attention: public dying. Drawing on the extensive media coverage of reality TV personality Jade Goody’s dying and subsequent death in early 2009, the article examines the way in which Goody’s dying illustrated how it can be commodified.
The locked-in syndrome (LIS) is a very severe condition caused by a primary vascular or traumatic injury to the brainstem, normally corresponding to a ventral pons lesion due to an obstruction of the basilar artery, and characterized by upper motor neuron quadriplegia, paralysis of lower cranial nerves, bilateral paresis of horizontal gaze and anarthria, and with preserved consciousness. Patients who have suffered this pontine lesion generally have preserved vertical eye movements and movement of the eyelids (blinking), this being their only means of responding to the outside world. A survey was conducted of 44 people diagnosed with LIS, all of them belonging to the Association of Locked-in Syndrome (ALIS) of France. Results of this survey showed that LIS was equally frequent in men and women (51.2% vs. 48.1%) and had occurred at any age between 22-77 years of age (normally between 41-52 years, the mean age being 46.79 years). The average time that transpired post-insult was 71.35 months. The principal cause of LIS was stroke (86.4%), with traumatic brain injury (TBI) being a distant second cause with an incidence of only 13.6%. The diagnosis of LIS was usually made around the middle of the second month after onset (mean of 78.76 days). The principal treatments, when present, were pharmacological and physiotherapy. However, 47.1% of the patients were not receiving treatment of any kind at the time of the survey. Neuropsychologically, 86% had a good attentional level, 97.6% were temporally oriented and 76.7% could read; 18.6% reported memory problems and 24% showed visual deficit (found mainly in patients with LIS originated by TBI); 47.5% reported a good mood state and 12.5% reported feeling depressed; 61.1% reported having sexual desire, but only 30% maintained sexual relations; 78% were capable of emitting sounds and 65.8% could communicate without technical aid; 73.2% enjoyed going out and 81% met with friends at least twice a month. Only 14.3% participated in social activities and 23.8% watched television regularly. Nearly 100% of the patients reported being sensitive to touch to any part of their bodies. This survey suggests diagnostics and rehabilitation procedures.
A review of the scientific literature on locked-in syndrome (LIS) is offered. The clinical features, diagnosis and prognosis of LIS are reviewed, and methods regarding the differential diagnosis of LIS with severe disorders of consciousness are considered. Effective treatment, physiotherapy, and methods of communication are reviewed. Although progress in the field of communication for patients with LIS is promising, it is concluded that there are new possibilities to be pursued and that a more positive outlook in the area of professional care of the patients, as well as more extensive imaginative research will facilitate new and positive strategies for this syndrome.
To determine the long-term outcome of patients with stable locked-in syndrome.
The community.
Retrospective phone survey. This study was further follow-up on a previously reported cohort.
Twenty-nine persons with locked-in syndrome were included in an initial cohort 11 years prior to the current study. Records or contact with family showed that 16 were deceased. Telephone interviews were made with 1 living patient and the caregivers of 11 others. Public records documented survival of 1 nonrespondent.
Survival, codified responses regarding functional activities, social activities, and satisfaction with life.
Five-, 10-, and 20-year survival were 83%, 83%, and 40%, respectively. Ten subjects had not been hospitalized in the previous year. Eight lived with family. Little change in impairment occurred, but care was simplified. Improvements in communication related to technology, including computer and Internet access. Eleven left home at least monthly. Caregivers reported seven expressed satisfaction with life; five were occasionally depressed. No deaths could be attributed to euthanasia and no survivor had a "no code" status. One patient wished to die, seven had never considered euthanasia, six had considered and rejected it.
Persons with initially stable locked-in syndrome can have prolonged survival, can live in the community if there is enough support, and have some measure of quality of life.
This paper focuses on a critical development in the life of the requested death movement [McInerney, F. (2000). "Requested Death": A new social movement. Social Science & Medicine, 50(1), 137-54.], that being the passage of the Northern Territory of Australia's Rights of the Terminally Ill (ROTI) Act 1995. This legislation, for the first time anywhere in the world, allowed for lawful euthanasia and physician-assisted suicide, thereby fulfilling key requirements of the movement. Taking a constructionist perspective, I analyzed discursive representations of dying, death and medicine in selected Australian print media during this time period (1995-1997). The media's predilection for reporting dramatic and unusual death coincided with the movement's construction of contemporary dying as horrific, intractable, and intolerable. Across all analyzed publications and genres, an heroic discourse was found to be a dominant influence, couched within a dramatic framing that served to reinforce many of the claims of the requested death movement. The framing of requested death activists as heroes, and of requested death itself as a redeeming and transforming act for those seeking it, were preeminent in press portrayals. The dominance of this heroic discourse suggests that such media and movement frames worked in tandem to both resonate with and reinforce popular Australian notions of terminal illness and dying in the late 20th century.
Switzerland for an assisted suicide, with his wife Wynn in 2003. Fig. 9. Dianne Pretty with her husband, Brian, at the European Court of Human Rights The anthropology of the beginning and ends of life
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Reginald Crew, the first Briton known to have travelled to Switzerland for an assisted suicide, with his wife Wynn in 2003. Fig. 9. Dianne Pretty with her husband, Brian, at the European Court of Human Rights, Strasbourg, 2002. MARK THOMAS/REX REX JULIAN HAMILTON/REX ADRIAN SHERRATT/REX SIPA/REX SIPA/REX Kaufman, S. & L. Morgan 2005. The anthropology of the beginning and ends of life. Annual Review of Anthropology 34: 317-41.
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