Focus: A moment for dying and death?

Focus: A moment for dying and death?

David Clark

This special issue of Discover Society on Death and Dying is guest curated by David Clark.

Over 20 years ago, one of the contributors to this special edition, sociologist Tony Walter, asserted that the ‘revival of death’ was underway. It seems he was right. A recent newspaper article describes ‘how death got cool’. It features burgeoning examples of contemporary death practices, from funerals as artistic expressions of a life well lived, to conversations taking place around the world in death cafes, the interest of young people in all things mortal, and the rise of a death acceptance collective to promote ‘the good death’. Lists of best-selling books can now include explorations of death, dying and bereavement, illness narratives, pathographies, and reflections by clinicians on how they encounter mortal illness, pain and suffering in the course of their work. Death literature, commentary and representation are pervasive in contemporary culture.

It would seem that what Anthony Giddens called the ‘sequestration of death’ has begun to break down. Dying and death appear to be ‘having a moment’. Modernity’s construction of death as taboo, privatised, suppressed even, seems less convincing these days. We see less support for the argument that death is silenced, hidden, confined to institutions, the work of professionals or even ‘specialists’ in end of life care. There is growing evidence that people want to talk about these things. Former silences are giving way to new narratives, representations, constructions that ‘open up’ discourses about human mortality and promulgate wider interest in the social aspects of dying, death and bereavement.

This special issue of Discover Society contains many facets. It takes as its inspiration the notion from sociologist Peter Berger that human society is, in the last resort, men and women banded together in the face of death. The contributions are from members of the interdisciplinary End of Life Studies Group at the University of Glasgow, together with some of the group’s collaborators from around the world.

The articles come from experienced academics, postgraduate students, as well people working from policy perspectives, in clinical practice, and in areas of end of life care service development. They highlight the uncertainties and unpredictabilities that now surround processes of ageing and dying, and they reveal some of the possibilities that also result.

Erica Borgstrom offers an exploration of dying as a family practice asking not only what families do in the face of death and loss, but also what families are in these contexts. Merryn Gott, drawing on research from New Zealand examines how ‘family carers’, mainly women, face growing and complex demands upon their commitments, skills and resources. She highlights some of the problems that can arise when the ‘co-production’ of care involves family members in situations that are challenging technically, as well as ethically and socially.

Mary Ellen Macdonald, from a Canadian perspective, introduces us to the ghosts that dwell alongside bereaved people. Questioning normative models of grief, she shows how bereaved parents endeavour to keep their deceased children present in their daily lives, despite wider pressures to let them go. Solveiga Zibaite uses the changing world of computer games to illustrate examples of, ‘narrative driven’, death positivity, including the intriguingly titled example of the ‘Mortician’s Tale’.

Naomi Richards challenges the false separation between discourses of active ageing and good dying. In failing to acknowledge that ageing and dying are a continuum, we become culpable of a perverse form of death denial and risk failing to offer the right form of care at the right time, such as palliative care to frail elderly people. Helle Timm explores the many social variations and constraints that surround the otherwise universal experience of death. She shows how in Denmark, the vast majority of the population trust the health care system to take care of their physical symptoms at the end of life, but only a minority trust it with related existential problems. Meanwhile, more than 70% of Danes would like euthanasia to be a possibility.

Lars Johan Materstvedt takes us through the minefield of definitions and terminology relating to assisted dying, explaining the meanings, legalities and practices associated with euthanasia, physician-assisted suicide, and assisted suicide – and the varied jurisdictions in which they apply. Jacqueline Kandsberger explores a related theme in examining the drivers and tensions that promote an interest in advance care planning – a proposition that responds to growing concerns about intensive, but often futile interventions at the end of people’s lives, as well as to worries about rising health and social care costs.

Richard Meade, as policy lead for the Marie Curie charity in Scotland, is advocating for palliative care, but shows the inequities of access and the need for greater integration of palliative care principles within the health and social care system. Research commissioned by the charity suggests that a quarter of people who die in the UK from a terminal illness do not receive the palliative care that could help them. At the same time, using the unlikely example of hip fractures, Fiona Graham shows how older people who are not terminally ill can also require the skills of palliative care and how these can be met by surgeons as well as primary care teams.

Marian Krawczyk gives a perspective on end of life in the hospitals of the global north, especially North America. Here, efforts to intervene to address specific problems, and the medical division of labour that ensues, can create the curious and complex scenario of ‘death without dying’. In the global south other challenges are dominant. Devi Vijay shows how privatization, the legacies of colonial poverty, and social vectors of class, caste, gender and race introduce ‘structural violence’ into illness, suffering, and dying. Here the efforts that have been made in Kerala, India, to promote community engagement in end of life care provision, demonstrate new possibilities when local mobilization is harnessed to compassion and political awareness.

For Tony Walter, the social science responses to dying, death and bereavement fall into two categories. First there are those which begin from the notion that death contains existential terrors, against which humans seek in various ways to protect themselves. Second there are those who focus on the practical challenges which death creates for human society – from the delivery of care to the disposal of the dead body.

In the future social science will need to get beyond these broad positions.

It is clear that questions about where, how, when and in what circumstances we die create some rich territory for social analysis. They also create fertile ground for those who want to engage in wider debates, campaigns and strategies in order to forge links between academic research and ‘real world’ problems. Within the End of Life Studies Group we are committed to this sort of public, practice and policy engagement. We are fortunate to have received significant support from the Wellcome Trust to develop this kind of work in all its aspects though an Investigator Award. We look for active ways to engage a wide range of communities of interest and communities of place in the studies we conduct.

Our group is sympathetic to those involved in ways to improve the quality of our lives and the care that we receive at the end of life. Prominent among these are the practitioners and promoters of palliative care. Indeed, I have worked closely with Scottish Government in the formation of it Strategic Framework for Action on Palliative and End of Life Care and we are currently partnering with the Worldwide Hospice Palliative Care Alliance and others to map the global spread and development of palliative care provision in 234 countries of the world.

But we do these things with a degree of caution.

Our contention is that much social science on aspects of death, dying, bereavement and end of life care has polarised in two camps. The first, caught up in obscure language, opaque theorisation and an inclination towards exotic topics, I regard as too detached to be useful to policy or practice. The second, heavily focussed on system and clinically derived questions of short-term relevance and narrowly oriented to issues of little import to the wider context, I consider too embedded to be critical, and unlikely to generate significant change. Hubristically, in our own group, we seek to find a middle path between the extremes. We are attempting an engaged form of social science that can have wider relevance, precisely because it asks new questions and tries to conceptualise these in durable theoretical frameworks.

So, as in this special issue, we argue for a social science research agenda that looks to end of life issues, broadly defined, and does so in a searching as well as problem oriented manner.

It is a good time to be taking such an approach. Around the world there is increasing interest in end of life issues. Driven by population growth and ageing, 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. We have been exploring a range of interventions that are emerging in the face of these challenges.

Our group conceptualizes a comprehensive taxonomy of interventions, defined as ‘organized responses to end of life issues’ and classifies them 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 which primarily construct a shared understanding of an end of life issue) or as ‘instruments’ (organized responses which assume a shared understanding and then move to act in that context).

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.

End of life issues are beginning to figure more strongly in public debate and planning, but we lack understanding of new approaches to these matters, beyond those that sit within the paradigm of hospice, palliative care and related health and social services. There are many other forms of intervention at the end of life that merit policy, practice and research attention. Our goal is to populate a taxonomy of end of life interventions that has four distinct benefits: 1) over-viewing the many forms of organized human endeavour that are oriented to end of life issues 2) mapping the terrain into relatively distinct elements; 3) alerting sectional interests and specific stakeholders involved in end of life interventions to the range of cognate actions that exist and providing opportunities for synergy, partnership or complementarity 4) providing a framework for the macro-evaluation and synthesis of knowledge across the spectrum of interventions.

Notwithstanding this push for consensus, we do not fight shy of serious comment and critique of new orthodoxies as they emerge in the discourse. Using Chakrabarty’s notion of ‘the waiting room of history’ we have set out a searching critique of the assumptions that underpin global health strategies for palliative care and how it should develop around the world. We have a forthcoming piece in the ‘current controversies’ section of the Journal of Medical Humanities in which we explore critically the vogue for seeing ‘compassionate communities’ as the solution to perceived deficits in the health and social care system, particularly relating to care at the end of life. We are also just concluding an analysis of the rise and demise of the Liverpool end of life care pathway, using theories of boundary objects.

There is huge potential for social scientists with interdisciplinary orientations to contribute to work of this kind. Some excellent examples of co-operation exist in the biennial Death, Dying and Disposal Conference and in postgraduate workshops of various kinds. This special edition gives a flavour of the opportunities for public engagement and academic scrutiny, in a context where ‘how we die’ has become a contested space and where dying and death are indeed ‘having a moment’.

References and further reading:
Clark, D., Inbadas, H. , Colburn, B., Forrest, C., Richards, N. , Whitelaw, S. and Zaman, S. (2017) Interventions at the end of life – a taxonomy for ‘overlapping consensus’. Wellcome Open Research,2,7. (doi:10.12688/wellcomeopenres.10722.1)
Richards, N. (2017) Old age rational suicide. Sociology Compass, 11(3), e12456. (doi:10.1111/soc4.12456)
Walter, T The Revival of Death. London: Routledge, 1994.
Zaman, S Inbadas, H Whitelaw, A Clark, D (2017) Common or multiple futures for end of life around the world? Ideas from the ‘waiting room of history’. Social Science and Medicine, Vol 17: 72-79.

 

David Clark, FAcSS, OBE is a Wellcome Trust Investigator and Professor of Medical Sociology at the University of Glasgow. His interests are in the history and development of palliative care and other end of life movements, and in the conceptualisation and evaluation of multiple forms of intervention at the end of life. His latest book Cicely Saunders – a life and legacy will be published by Oxford University Press in June 2018.

2 Comment responses

  1. Avatar

    Love this article and your point of view is so very much appreciated (at least from this patient’s point of view) As a layperson who’s become passionate about the nuances of end of life conversations and decisions, I did an experiment: In the spirit of Candy Chang (whose ‘before I die’ concept you have as your pix) I took a whiteboard to the health conferences I attended last year. On it was written, I want to _______ until I die. The reception gobsmacked me (in the most positive way 🙂 I have dozens of ‘completes’…Motivated me to revamp my website (bestendings.com) but more importantly, I witnessed the ‘tude change: prompting think about the small things that give joy, pleasure, meaning to life. Most of which can be achieved – albeit sometimes requiring creative thinking: many want to be by the ocean until they die. Perhaps tech – virtual reality or an audio loop – can be called upon to deliver.

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  2. Avatar
    March 13, 2018

    My dad was horrifically failed by the NHS in so many ways. Combine that with an unbelievably and extremely aggressive type of renal cancer. He was stage 4 before he even got a diagnosis, thanks to his biopsy being ‘lost’ for four weeks. A fortnight after his diagnosis, he died.
    We didn’t discuss death. It was the hugest white elephant. His obvious avoidance regarding the subject left my mom, my brother and I respecting his way of dealing with it, which was not dealing with it at all.
    We knew that his extreme privacy regarding his death was a final trademark act of a selfless man; a man who always put his wife and children’s wellbeing before his own, unassumingly and with stealth. Any praise in such matters would be politely rebutted.
    Time had simply run out for matters of business to be dealt with; accept that a. if he hadn’t of ignored blood in his pee 18 months prior b. if he’d just mentioned it to my mom that c. he
    wouldn’t be about to die and d. wouldn’t be about to do the unspeakable (literally) deed of breaking our hearts by dying (which was in the interim avoidable).
    Absolutely the worst got worse.
    He died without any of us there.
    And because his impending death was not discussed, we had no way of knowing if it was his wish to not put us through that, if he viewed his own death as ultimately a final and private journey.
    The alternative ending is just as possible; he died on his own, in a ward side room because the hospital staff dropped the ball, demonstrated yet again, in such an incomprehensibly incompetent manner.
    The fact my mom was told of my Dad’s death over the PHONE by the Sister in charge (many years of working within the NHS as a Pharmacy Technician across three different Trusts makes that scenario scream red flag) seem knee-jerk reactive in hindsight. Combine that with zero palliative care plan in place, he died with nothing more than a Fentanyl patch as pain control. Thirdly, I now know he obviously had not been dead for two hours when I went to see him in situ deceased. I know so because I have since lost my mom and I was there with her when she died. And I went back to see her a couple of hours after she died, after the nurses had washed her and removed all life support paraphernalia etc before they took her body to the morgue. My mom had a mixture of flesh pink and greyish hues to her face. Her lips had greyed. There was a slight warmth to her skin, albeit clearly fading away.
    My dad was waxy skinned, blue lipped and cold to the touch.

    I’ll be honest.
    The whole journey of my Dad’s demise and ultimately the way in which he died, and MORE importantly, the way he should NOT have died has killed me.
    An already awful and difficult loss by default has been compounded into a psychological torture that in my weaker moments has me thinking about my dad dying on his own, his last conscious moments knowing we are not there, in an amount of pain that we wouldn’t even let an animal endure or suffe! And, possibly extremely scared, totally forgotten about and dying alone.
    It kills me to think such a loving and brilliant human being died like that.
    My dad didn’t deserve that; to die like he didn’t matter.

    Moral of my story; avoiding the subject of death has taken away all sign posting for how to be able to grieve.

    No matter how scary the prospect of breaking down in front of the person who is dying or role reversal for the person who is dying to break down in front of those they’re leaving behind, please! BE COURAGEOUS!

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