Ageing and dying are a continuum

No abstract available

Old age rational suicide

In the societal debate surrounding voluntary euthanasia or physician-assisted suicide, there is a concern that older people will be left exposed to any legislation, subject to either faint suggestion or outright coercion from familial or professional carers. Whilst it is critical to take account of older people's potential vulnerability to any current or proposed assisted suicide legislation, there is a parallel strand of research exploring another relationship which older people can have with this debate: one of activism. Sociological research has shown that older people make up the “rank and file” of those active within the right-to-die movement. One of the stated motivations of some older people requesting hastened death has been that, in spite of an absence of life-threatening disease, they feel “tired of life” or that they have lived a “completed life” and feel ready to die. The notion of suicide for reasons of longevity and being tired of life are becoming increasingly significant given the fact of global ageing. This article brings together empirical and theoretical research on the phenomenon of old age rational suicide in order to develop an underexplored area in both the sociology of death and the sociology of ageing

Using Participatory Visual Methods

This toolkit aims to share our experiences of using a variety of participatory visual methods in a project designed to challenge stereotypes of older women, called Representing Self – Representing Ageing (funded by the Economic and Social Research Council [Res-356-25-0040]. See: www.representing-ageing.com for more details)

Structural inequalities and dying at home during COVID-19

No abstract available

What is the cultural value of dying in an era of assisted dying?

Assisted dying is now a lawful and integral component of many societies ‘death system’, orienting individual and collective encounters with death and dying. While only a very small number of people living with terminal illness in these societies will opt for an assisted death, the choice, nevertheless, exists for those who satisfy the legal criteria. Theoretically, in these jurisdictions, this turns dying into an optional part of the human life cycle; a final phase of life that, until now, seemed a universal feature of life except in instances of sudden death. As anthropologists specialising in death and dying, we pose the question of how the various cultural scripts that have sought to give meaning to dying in post-industrial Western societies since the mid-20th century might be affected by the advent of assisted dying. We begin by building on both medical and social science literature to construct a working definition of ‘dying’. We then identify four dominant cultural scripts: psychological growth, preparation for death, the suffering experience and the caring experience. After outlining each script, we discuss how it may (or may not) be affected by the increase in assisted dying legislation. We propose that it is the ‘caring’ script; the notion of affective, intergenerational bonds created through the experience of caring for people specifically in the last few months or weeks of their life, which are likely to be most affected. However, we find that access to these cultural scripts is already limited because of the widespread reluctance to recognise and name ‘dying’, and the challenges of doing so. Consequently, the various cultural scripts we identify are negated not by the increase in assisted dying, but rather by a combination of medical advances and institutional orthodoxies which limit opportunity for people to experience themselves, or others, as ‘dying’

Advanced Care Planning at the End of Life for People with Dementia

In the UK is estimated at around 800,000 people, with 90, 000 people with dementia in Scotland. It’s forecast that by 2025, one in three people over the age of 60 will have dementia when they die. It is not always recognised that dementia is a progressive and life-limiting illness – perhaps because you can die of other things for example cardiovascular disease. However, as a result dementia hasn’t received the same level of attention or professional support as other life-limiting illnesses e.g. cancer. In response, a lot of policies – like the Scottish palliative care strategy want to get us talking about death and dying – but we need to get dementia included in those conversations. Dementia involves complex physical and psychological needs. Symptoms, rate of progression, and longevity are all specific to the individual, and can be unpredictable. People in the more advanced stages typically lose mobility, speech, and the ability to chew and swallow safely. One of the things which can characterise the end of life for people with dementia is that things can end up happening to them which they would not have wanted. We can call this treatment undignified – not the kind of ending they would have wanted involving unnecessary interventions. This is what people are seeking to avoid

Interventions at the end of life – a taxonomy for ‘overlapping consensus’

Context: Around the world there is increasing interest in end of life issues. An unprecedented number of people dying in future decades will put new strains on families, communities, services and governments. It will also have implications for representations of death and dying within society and for the overall orientation of health and social care. What interventions are emerging in the face of these challenges? Methods: We conceptualize a comprehensive taxonomy of interventions, defined as ‘organized responses to end of life issues’. Findings: We classify the range of end of life interventions into 10 substantive categories: policy, advocacy, educational, ethico-legal, service, clinical, research, cultural, intangible, self-determined. We distinguish between two empirical aspects of any end of life intervention: the ‘locus’ refers to the space or spaces in which it is situated; the ‘focus’ captures its distinct character and purpose. We also contend that end of life interventions can be seen conceptually in two ways – as ‘frames’ (organized responses that primarily construct a shared understanding of an end of life issue) or as ‘instruments’ (organized responses that assume a shared understanding and then move to act in that context). Conclusions: Our taxonomy opens up the debate about end of life interventions in new ways to provide protagonists, activists, policy makers, clinicians, researchers and educators with a comprehensive framework in which to place their endeavours and more effectively to assess their efficacy. Following the inspiration of political philosopher John Rawls, we seek to foster an ‘overlapping consensus’ on how interventions at the end of life can be construed, understood and assessed

"Readiness is all”: anticipating death in the U.K.

This thesis explores some of the different ways in which people anticipate their dying in the U.K. Through an ethnographic exploration of an arts initiative, a social movement, a legal case, and a new law, this thesis asks the question: how do people seek to gain recognition for their dying in the 21st Century? It is argued here that this recognition is deemed important because it is the last opportunity for people’s unique identity, as they perceive it, to be reflected back at them in the faces of those who witness their dying and who stand alongside them. This witnessing is often performed in public spaces, for example: a hospice day centre; in the media spotlight; at a right-to-die conference; or in a court of law, and it is in these places where people hope that their individualised dying self will be authenticated. This thesis focuses on what happens in these public spaces and asks whether recognition is always possible. It concludes by suggesting that there are some things which are perhaps too private, too particular, and too uncertain to be recognised or authenticated in the way in which people might wish. Section One of this thesis focuses on the activities of an arts charity which works in hospices in the U.K. and tries to elicit testimony from dying patients. Section Two focuses on the right-to-die movement: its history, politics, and the activists which bring it to life. Section Three focuses on the legal regulation of death through careful examination of a legal challenge and a new law which both involve people making anticipatory decisions about how they wish to die. As this thesis shows, people’s dying testimony can take many different forms (artistic, legal, bureaucratic), and it can be represented in terms of suffering or transcendence. But the overwhelming desire of the people who feature in this thesis is to have the particularity of their lives, which is mirrored in the particularity of their deaths, publicly recognised

Classic anthropological theories to help understand caregiving and dying during the COVID-19 pandemic

No abstract available

A critical rejoinder to "Life’s end: Ethnographic Perspectives"

This article stands as a response to Goodwin-Hawkins and Dawson’s (2018 Goodwin-Hawkins, B., & Dawson, A. (2018). Life’s end: Ethnographic perspectives. Death Studies, 42(5), 269–274. [Taylor & Francis Online], [Web of Science ®], , [Google Scholar] ) article “Life’s End: Ethnographic Perspectives” which was published in this journal as an Introduction to a Special Issue of ethnographies about end of life. We address three interwoven fallacies promoted in “Life’s End.” First, we begin by challenging the authors’ central contention that there is no “rigorous body of anthropological work on the issue of dying.” We then problematize the authors’ conflation of anthropology and ethnography. Finally, we deconstruct their argument that there is an “anthropological aversion” to the study of dying stemming from the inherent “intimacy” of ethnographic methods, as well as their assumption that there is something uniquely emotionally challenging about studying dying. We argue that in framing their Introduction to ethnographies of dying as largely one of absence, Goodwin-Hawkins and Dawson ignore a rich history and diversity of research. In challenging the authors’ obfuscation of our subdiscipline, we offer as a corrective a wide range of examples taken from a substantive canon of ethnographic research spanning almost 70 years. We conclude with a broader call for slow academia to ensure that important scholarly contributions are not erased from memory and history rewritten