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One of the points this book is trying to get across is that beliefs and practices surrounding death and dying are in a state of flux. Possibly one of the areas which is changing most is our approach to marking the end of life. Funerals, and all that surrounds them, are increasingly the subject of comment and debate and it seems that very little is as predetermined as may have been the case for previous generations. In order to make some sense of the burgeoning literature, both scholarly and popular, and to consider the implications of these changes for professionals working alongside people affected by a recent (and maybe not so recent) death, it may be helpful to separate out the various processes and events.
First, we are dealing with a number of public events (even the private ceremony is to some extent a public event), principally the funeral, burial, cremation and memorial service or gathering. Second, these events are controlled by society through legislation, municipal policies and cultural norms. The body must be formally released for burial, and there are controls on where it may be buried and what sort of memorial may be erected.1 The celebrant, whether a religious minister or secular officiant, will be guided by their own tradition and culture as to the content of the funeral. Particular religions may have rules about the timing of burial and preparation of the body. Third, the events through which we mark and deal with the end of life are constructed as social acts and to a large extent circumscribed by a mixture of cultural requirement and social convention.
The social and demographic changes outlined in Chapter One have also created a situation in which dying has become the business of professional services. Very few people now live their lives to the end, in their own homes, without any recourse to formal health or social care services. For the vast majority of people dying in old age, these service providers will be involved to a greater or lesser extent with their lives, and the lives of their families, often intensively in the last few weeks or days. For the younger person who dies suddenly and unexpectedly, perhaps as a result of accident or injury, accident and emergency services will be called upon not only to deal with the medical emergency but also to support the bereaved relatives. Thus the ways in which health and social care services are organised and delivered have a profound effect on the experiences of dying and bereavement and also on the ways in which the individual professional may seek to offer help. These services have themselves been subject to considerable change and challenge in the late twentieth and early twenty-first centuries. In the developed societies of Europe and North America, the pace of national policy change has been rapid and can be seen to reflect common global trends as these societies respond to the overlapping health and social needs of an increasing sector of the population which requires more intensive interventions over a longer period of time (Tester, 1996; Walker and Maltby, 1997). In the developing world, the scale of epidemics, such as the HIV/AIDS crisis in Africa, has required the rapid training of non-professional healthcare workers who deal with death on a daily basis and in large numbers.
If there has to be a reason for another book on death, dying and bereavement, it is this: a subject which is of timeless significance for human beings as individuals, nevertheless is experienced in a social context, and that context is changing rapidly, irreversibly and, some would argue, fundamentally. Health and social care practitioners are both affected by these changes on a personal level and as professionals must negotiate their role and task to take account of this changing scene. It may be true that death is a universal human experience and in this sense the great leveller, but in every other respect it seems that dying and bereavement throw up a complex mesh of issues unique to the individual, yet shaped by prevailing social, political, legal, economic, philosophical, religious and cultural imperatives. The overarching theme of this book is that process of negotiation; its quest is the search for a knowledge base which is relevant and a practice framework which is ‘fit for purpose’ in contemporary health and social care settings. There is one principal limitation concerning the scope of the book which must be acknowledged at the outset. Neither global context nor cultural variation can be covered exhaustively although both are key themes in the argument and international examples and multicultural references are woven throughout. There is admittedly something of a focus on the UK but it is to be hoped that this serves to provide an in-depth starting point rather than exclusive discussion.
In this process of ‘negotiating death’ it is the context of the twenty-first century which determines the prevailing attitudes to death, the practices created to mark its occurrence and the accommodation of the experiences of dying and bereavement.
At first sight, dying in old age presents the most timely and natural of all deaths and the accompanying bereavement the most anticipated and uncomplicated grief. Perhaps for this reason, there has historically been a notable neglect of the topic. Research into ageing, despite its mushrooming in the latter part of the twentieth century, largely ignored the subject of death until it became apparent that the health and social care of older people might merge seamlessly into end- of-life care. The seminal work on dying and grief which we looked at earlier was either based on younger populations, such as younger cancer sufferers or those bereaved through public disaster, or the inclusion of large numbers of older people, such as older widows, was coincidental and the lens of old age did not provide an explicit angle in the theorising. The counselling textbooks continue to pay little attention to the dimension of old age, although, by comparison, new resources for working with children and young people in grief appear all the time. Yet for most of us in the advanced societies of late modernity, our first and only encounters with death will occur in conjunction with old age, as we experience the deaths of grandparents, aged parents, partners, siblings and friends who have reached old age, to finally face our own death. The majority of people in the Anglo-Saxon and North American worlds currently die aged 75 or above and the proportions dying at over 85 years are set to rise. Death is in one sense ever-present for those working with older people, yet at the same time invisible in older people’s services.
Contemporary dying presents a series of questions for the dying person, their family and the professionals who attend them. These questions are embedded in complex ethical debates which have legal, medical, ideological, philosophical and religious ramifications. This situation arises from two features of modern life – the fact that medical advances allow us to control, to a great extent, both the manner and moment of death, and a concern for human rights, which constantly seeks to balance the rights of the individual with the wider interests of society. Woven through are a number of subsidiary issues which pose their own sets of questions. When is a person effectively dead? How do we determine capacity and incapacity and who should take ‘life and death’ decisions on behalf of a person deemed incapable of making their own? How do we determine quality of life? Are some lives more valuable than others when it comes to allocating resources or making treatment choices? Do a person’s wishes and choices voiced at one point in time have currency when the situation changes? These and many more questions about the relationship between life and death face individuals and families in their personal lives and professionals in their daily work. All too frequently individuals find themselves surprisingly ill-prepared when confronted with a particular dilemma, despite increasing public debate, fuelled by some high-profile cases.
The ongoing demographic changes discussed in Chapter One have resulted in many of these issues seeming to crystallise in the care of older people. These are separately discussed in Chapter Six.
The approach of this book has been to examine the theoretical contributions from the different academic disciplines engaged in the study of death, dying and bereavement, and to set this alongside the professional context and issues faced by the different practitioners delivering health and social care. What is missing so far is any attempt to integrate these perspectives across disciplines and professions. The ‘caring professions’ have long but separate traditions of working with people who are dying or bereaved. Some, such as nursing and pastoral care, trace their whole tradition back to care of the sick and dying and are currently key members of the multidisciplinary palliative care team. Others, such as social work, found their niche in working with loss as they professionalised before Cicely Saunders, herself a one-time medical social worker, incorporated social work into her original vision of holistic care in the hospice. Psychotherapists from Freud onwards have dealt with the business of attachment and loss and the modern professions of psychiatry and clinical psychology continue to work with people who experience complicated grief. Psychiatry and psychology spawned the original formulations of grief counselling and grief therapy and continue to be active in its development, as Chapter Four explored. Clinical psychiatrists and psychologists tend to be less integrated into multidisciplinary palliative care teams, but in the forefront of dealing with suicide risk and post-traumatic stress disorder arising from disasters and other forms of traumatic loss.
Modern medicine has been rather more concerned with cure than care of the dying, but the development of palliative medicine as a specialism is spawning doctors who look outside of bio-medical models to address the wider needs of the dying person.
Once regarded as taboo, it is now claimed that we are a death-obsessed society. The face of death in the 21st century, brought about by cultural and demographic change and advances in medical technology, presents health and social care practitioners with new challenges and dilemmas.
By focusing on predominant patterns of dying; global images of death; shifting boundaries between the public and the private; and cultural pluralism, the author looks at the way death is handled in contemporary society and the sensitive ethical and practical dilemmas facing nurses, social workers, doctors and chaplains. This book brings together perspectives from social science, health-care and pastoral theology to assist the reader in understanding and negotiating this ‘new death’.
End-of-life care and old age, changing funeral and burial practices, new stigmas such as drug-related bereavements, are highlighted, and theories of dying and bereavement re-examined in their context. The concluding chapters incorporate recent case studies into an exploration of the meanings and shape of holistic and integrated care.
Students interested in death studies from a sociological and cultural viewpoint as well as health and social care practitioners, will benefit from its critical appraisal and application of the established knowledge base to contemporary practices and ethical debates.
The sociological study of death which began in the mid-twentieth century spawned what for a long time was the dominant area of academic interest – the study of grief. Geoffrey Gorer’s classic work on death in modern Britain took as its starting point the observation that the restriction of public mourning and reduction in ritual which had come about in post-war Britain had deprived individuals of support in their grieving, and, moreover, created an atmosphere in which mourning was treated as ‘a weakness, a self-indulgence, a reprehensible bad habit, instead of as a psychological necessity’ (Gorer, 1965, p 113). In the death-denying societies of the mid-twentieth century, grief as a problematic phenomenon began to be theorised and interventions developed and refined on that basis. In fact, long before ‘modern death’ was discovered, Freud had been interested in the importance for psychoanalysis of loss of a love object, and the intra-psychic processes set in motion by significant loss. Thus, right from the start, attempts to better understand grief went hand-in-hand with attempts to help those whose grief looked problematic.
Guidance of those professionals who care for people who are dying and bereaved continues to be one of the chief stimulators of the study of bereavement. Yet the application of theoretical underpinnings has not been unproblematic and much of the more recent revision is concerned with the assertion of lay experience of bereavement over the professional discourse on grief. Tony Walter, using the term ‘policing grief ’, looks at the many ways in which the over-regulated use of models of grief by professionals has led to dissonance between their attempts to help and the actual and varied experiences of bereaved people (Walter, 1999).
Death, dying and bereavement have been the subject of considerable interest to scholars since the middle of the twentieth century, despite the message that we are a ‘death-denying’ society. These attempts to understand how death is handled in societies and its impact on individuals and communities become ever more complex as one dominant approach supersedes another, or new refinements in relation to particular categories of bereavement are suggested. Despite differences in emphasis and divides in opinion, at the heart of these developments lies the widely accepted assumption that dying and bereavement are experiences which are both individually and socially mediated. Thus, as societies change, it is likely that dying and bereavement will be experienced differently by individuals, yet the psychological phenomena of attachment and loss may remain essentially unchanged. In fact, we still know remarkably little about the interaction between the individual subjective experience of loss and the particular social system to which that individual belongs.
A number of disciplines have contributed to this theorising and each makes its own contribution at the same time as it has something to say about the whole picture. So, for example, in the early part of the twentieth century, it was social anthropology which turned its attention to the rituals and symbols which societies construct to manage death, first through the examination of primitive societies but then shifting focus to search for the patterns in modern society. The degree to which social ritual is present or absent around death has been taken up by sociologists as a key indicator of whether or not death is denied, hidden or open in a given society.
