Extending the Boundaries of Care

Medical Ethics and Caring Practices

Tamara Kohn, Rosemary McKechnie

• Publisher: Taylor & Francis
• Year: 2020
• eBook ISBN: 9781000181630
• Edition: 1
• Topic: Social Sciences
• Subtopic: Ethics in Medicine
• Index: Social Sciences

How is the concept of patient care adapting in response to rapid changes in healthcare delivery and advances in medical technology? How are questions of ethical responsibility and social diversity shaping the definitions of healthcare?In this topical study, scholars in anthropology, nursing theory, law and ethics explore questions involving the changing relationship between patient care and medical ethics. Contributors address issues that challenge the boundaries of patient care, such as: - HIV-related care and research- the impact of new reproductive technologies- preventative healthcare- technological breakthroughs that are changing personal-caring relationships.Chapters range from a consideration of the practicalities of nursing and family healthcare to a debate about 'universal human needs' and patients' rights.This book is a provocative exploration of the ways in which healthcare models are socially constructed. It will be of interest to policy-makers, medical practitioners and administrators, as well as students of sociology, anthropology and social policy.

PART 1
Embodying Care: Giving Voice to Experience

We can learn a tremendous amount about the relations and contexts of caring practice from the detailed reflexive observations of individuals immersed in a caring relationship. While some analyses of caring practice will make generalized 'sound-bite' reference to individual experience, the way in which that experience is shaped over time by relations of power and personal dynamics between the 'cared for' and different carers tends to remain hidden from view. The first chapter in this volume shows how important the individual narrative of caring experience is for the study of care. It gives a most moving and revealing account of an anthropologist's personal experience of caring for her own mother, who was, unbenownst to all until much later, dying from Creutzfeld-Jakob disease (CJD). It makes us step immediately and completely into the heart of the matter, and gives us an insight into the tenderness and bitterness that are generated through the caring process. By weaving together past anecdotes of a time when her mother was a vibrant young intellectual with a detailed account of her deterioration of memory, Judith Okely's narrative manages to do more than make us feel a tragedy of decline and loss. Indeed, it reveals how the medical community tends to remain oblivious of the intimate knowledge which is so significant for the close family carer. By starting at the experiential heart of the issue, we are compelled to attend closely when more general themes are raised in this and subsequent chapters about the socio-cultural construction of different classes of carers (doctors, nurses, etc.), of the devaluing of the ageing body, of the gendered division of labour in relation to care and of the disjuncture between expert advice and grounded knowledge and intuition.

There are many useful points of comparison to be drawn between Okely's chapter and the one that follows it. Frances Price also deals with very visceral examples of caring, this time embedded in the experience of having triplets as a result of in vitro fertilization treatment. Like Okely, Price highlights the constructed biases of the medical community against a backdrop of personal reflections on experience. In particular, she looks at how the 'problem' of multiple births has been framed by the medical community in terms of the birth process itself, and how it neglects to deal with the great problems the parents are left with in caring for the children afterwards. Larger attitudes about the normality of the child-caring process in the domestic sphere inform a network of social and medical services, which subsequently fail to support parents and stigmatize them as being unable to cope. In both chapters, relations of power in different caring contexts are revealed from the inside out. Both chapters also deal with highly topical subjects in popular and medical professional circles: the 'new' and frightening disease of CJD, in the first instance, and multiple births, which arise from the development of new reproductive technologies, in the second.

1
Love, Care and Diagnosis

Judith Okely

Anthropological fieldwork aims at participation, but, so long as the fieldworker is not an indigenous member, there is some degree of estrangement. This is something which the anthropologist is obliged to confront and work with. There are degrees of involvement and shared understanding. Renato Rosaldo powerfully discusses the links between his personal rage after the tragic loss of his wife, Michelle Rosaldo, in the field and the anger/rage in the huntsmen's tales recorded and previously analysed in earlier fieldwork (1984).

I present a parallel case from Europe, where I had done fieldwork among the aged, but which I had hitherto not related to my ageing mother. I had also read and studied cross-cultural contrasts in healing, death and misfortune. When I found myself as unpremeditated actor rather than researcher, my powers of ethnographic observation were engulfed in the drama of the events. As daughter to mother, a role which I could neither choose nor discard, my relationship with the cared-for subject mixed emotions of love with the practicalities of care and the consequences of medical diagnosis. Only after the drama can I distance myself for some ethnographic description and comprehension.¹

There are several strands to my discussion and ethnography. In one, I explore the experience of care in the case where the anthropologist is one of the carers, and in a decidedly personal context. The 'researcher' writer, in the case presented here, can in no way sustain a detached observer standpoint, even if that had been the preferred stance. Indeed, such a personal experience as the care and death of one's parent is hardly embarked upon as research. Only retrospectively, after the death of Bridget, my mother, did the detailed material present itself as something to interpret and write about. It happens that the sensitivities developed in anthropological fieldwork become part of the anthropologist's being. Indeed, both carer and cared for brought insights along the way from the perspective of social science; my mother had been a university lecturer in sociology and social administration, and before that a social worker with the elderly. The author, as one of the carers, is an anthropologist. We were both making running observations about what was happening. I draw on some of those insights now that the events have run their course.

What also emerges are the shifts in the relationship between mother and daughter. The mother/parent was the original carer. She had breastfed, changed the baby's nappies, washed, clothed and guided the child. The mother had intimate knowledge and control of the infant's body and character. She had chosen to continue to be a carer in loving, subtle ways through most of the daughter's adult life. Then in a series of stark incidents, the daughter was confronted with the frailty, vulnerability and increasing helplessness of the parent. In this case, my mother's illness, although never diagnosed in her lifetime, began imperceptibly, but lurched from the bizarre to total disintegration.

Other daughters have written autobiographical accounts of aspects of their relations with their mothers (e.g. Stanley 1992; Brettell 1997). De Beauvoir wrote a pioneering essay in 1964 (1980). This was something from which I remained somewhat detached when I wrote my own study of de Beauvoir (Okely 1986a). But my book was dedicated to my mother, and there are now some resonances, although my mother was a very different person from Madame de Beauvoir and our relationship did not bear the same history of conflict and incompatibility.

Another strand of this ethnography reveals how there are consequences for diagnosis arising from the different relationships with the 'patient' or cared for. Those involved in day-to-day, time-extended contact will have detailed knowledge of nuanced changes which are inaccessible to a distant doctor and consultant. The 'expert', trained in largely generalizable techniques, may fail to comprehend the importance of individual personality and the grounded knowledge of others. Deemed unqualified, these 'others' are not called upon for information relevant to diagnosis. The scientistic dismissal of 'anecdotal' evidence is embedded in Western medical orthodoxy. Where a premium is placed on the generalizable from statistical thousands, then the contrasting and supreme relevance of the anecdote for the diagnosis of one individual's affliction and illness is scandalously cast aside. Yet anthropologists and others have recognized the crucial significance of individual narrative and experience among the afflicted (Good 1994), as well as among those who surround them.

My detailed and incidental perceptions of others' grounded knowledge are consistent with recent debates about the flawed power of experts who either deny or appropriate, without acknowledgement, the grounded knowledge of those who live a daily, informed context. For example, it was the local farmers who first expressed concern about the long-term effects of Chernobyl nuclear pollution for sheep in Cumbria. But the experts, with hopelessly scientistic tests, at first dismissed the farmers' working knowledge of pasture and grazing patterns. Similarly, it was the parents who first suggested children's leukaemia clustering around the Windscale nuclear power station. Eventually, an official government report claimed to have 'discovered' the information.

Brian Wynne brilliantly explores these contexts in an article (1996) published after I had tentatively recognized the disparity between grounded knowledge of close associates or carers of a potential patient and the experts. His critique is based, likewise, on the rupture between generalizable positivist science and local, specific knowledge. As Wynne suggests, 'farmers' specialist knowledge of local environment conditions and sheep behaviour was ignored by the experts. . . The scientific knowledge constructed out of field observations began life as highly uncertain and uneven' (ibid.: 66) Yet this 'was obliterated by the time knowledge returned to the same public as formal scientific knowledge in official statements' (ibid.). The conflicts 'centred on the standardisation built into routine structures of scientific knowledge' when the farmers 'knew and could articulate various significant differences' (ibid.). There was a conflict 'between central administration and bureaucracy and a more informal, individualistic adaptive culture' (ibid.).

There are parallels among farmers and individual sceptics who raised questions about bovine spongiform encephalopathy (BSE), long before the British government took the matter seriously. By a strange and hideous twist, I discovered, ten months after my mother's death, that our family tragedy was interconnected with those very agricultural questions. I wrote the sections of this chapter about nursing, carers and grounded knowledge after the death of my mother in 1992, but before I learned of the correct diagnosis of her illness, namely Creutzfeld-Jakob disease (CJD). I had merely been sensitive to the brutal intellectual and social inadequacies of the medical profession.

The detached expert, whether in agriculture, nuclear power or medicine, has been 'trained' to eradicate difference and to seek the Holy Grail of generality, cleansed of all specificity, in the name of a hopelessly inappropriate and unknowledgeable definition of science. The gulf between generalizable detachment and grounded indigenous knowledge based on practice is found between Ministry scientists and Cumbrian farmers, between medical experts and day-to-day carers, and between positivist social scientists, addicted to quantifiable generalities, and anthropologists, who privilege ethnographic knowledge grounded in participant observation.

This chapter also raises the question of the need, especially in recent times in Britain, to find blame and then acknowledgement by some original perpetrators of an apparently avoidable death. If there is a suspicion that the death was caused by negligence, financial stringency or prejudice, be it racism, sexism or ageism, then those closest to the deceased are compelled to follow through the chain of causation back to the originating perpetrators. Although many may seek financial compensation for loss and suffering, sometimes a simple acknowledgement of responsibility and apology may best satisfy the bereaved. The rational argument in the modern world that death may be accidental, an inevitable statistical event for some rather than others at a specific time and place, is not experientially convincing at the individual level.

This has unexpected parallels with Azande witchcraft practice (Evans-Pritchard 1937). For these people of Central Africa, there is no 'natural' death. Coincidence as cause is not sufficient explanation. It is important to ascertain who (involuntarily) caused the death through witchcraft. Once located through the witch doctor, the person responsible simply apologizes, and there's an end of the matter. The 'witch' may have felt envy or anger towards the victim, but is not accused of deliberately causing the discomfort or death (ibid.). Similarly, it could be the case in Britain that the quest for the perpetrators might be in part be assuaged if there were an admission of involvement, when ultimate loss of life was never intended. A simple and genuine apology eases the pain, whether among the Azande or among the inhabitants of the UK. The relatives of victims of the Lockerbie plane crash, the capsizing of the ferry Herald of Free Enterprise, medical errors, food poisoning and other disasters may be seeking financial compensation. But as important to these people is a public admission that the deaths were not freak accidents or some 'act of God' (according to insurance parlance), but locatable to human agency.

In the case of my mother, I found myself caught up in the chain of causation of CJD. It went all the way back to the Conservative government. Sometimes I felt like the journalists listening to 'deep throat' in the underground car park in the film All the Presidents ' Men. One botched burglary, they were told, led all the way to the White House. One seemingly inevitable and almost natural death of a woman in her early seventies, it seemed, went all the way back to political and economic decisions and commercial greed in the meat-rendering business and the intensive industrialization of agriculture, with the blessing of the notorious Ministry of Agriculture, Fisheries and Food (MAFF). The illness turned out to be a topical and politically specific one which linked all the way back to the government in power.²

The 1978/9 Labour government had received a report which recommended that offal etc. for animal feed in the meat-rendering industry be heated at a higher temperature, which would have ensured the destruction of the BSE virus. When Thatcher came to power, the rendering lobby asked for and obtained the right to have a lower and hence cheaper temperature, thus ensuring the survival of the virus. Herbivorous animals fed with concentrates which consisted of recycled animal cadavers contracted BSE. The human equivalent is CJD. My mother regularly ate beef and Cornish pasties. Fortunately, I have been a vegetarian since 1984. For years, the government denied any possible links and failed to regulate the beef industry and abattoirs. Unavoidable attention is being devoted to links with the new variant of CJD, notably in the 1998 BSE Labour government inquiry. To date, it seems that the link between the classical CJD, BSE and beef consumption and production is still being 'rendered' invisible, even though the numbers of classical CJD victims also rose during the 1990s.

I may be in search of witches. Like others, the quest is not so much for financial compensation, but for acknowledgement of negligence, if not responsibility. In the case of CJD and the 'accidents' outlined above, recognition of agency by specific persons, however symbolic and ritual the act, is partly precluded by powerful commercial and political interests. As with others who have been bereaved, pain is diverted into thinking of the possibility that one's actions may in some small way lessen the chances of the same events being repeated in future.

Finally, the chapter focuses on the disparity between the perception and therefore treatment of the aged and, by implication, those of younger age categories. In mainstream Britain, an older woman's death could be passed over as just another demographic inevitability among the aged. There is a suspicion raised in this chapter and ethnographic evidence given to show that illness among the over-sixties can pass as 'natural'. Dramatic signs of sickness are systematically overlooked and even deleted without professional consequence, as was the case with my mother.

It appears that fatal illnesses receive more care and attention if suspected among the young. In 1996, the government and the media responded most dramatically to the diagnosis of a new variant of CJD, not only because it was a recent discovery, but, I contend, because it had been located among 'young persons'. The fatal consequences of Escherichia coli (E Coli) and Salmonella have had less ruinous consequences for food production than BSE and CJD for the British beef industry because, I suggest, the victims of the former have been largely persons of retirement age. The aged are, I can only conclude, more disposable in a society which privileges youth and where the aged are perceived as an economic burden. The years of financial contributions to the welfare state through the working lives of the aged are deleted from public memory and discourse. More importantly, the aged's continuing supportive place in the social and emotional lives of their friends, neighbours and descendants is obliterated in an ideology that cannot cost in financial terms the love and care which the aged give back to those who surround them. The aged are witness to our pasts and sometimes, with time on their hands, they give informed ...

Table of contents

• Cover
• Half Title
• Title Page
• Copyright Page
• Contents
• Acknowledgements
• Notes on Contributors
• Introduction: Why Do We Care Who Cares?
• Part 1 Embodying Care: Giving Voice to Experience
• Part 2 Controlling Care: Rights and Responsibilities
• Part 3 Framing Care: Alternative Visions in Dialogue
• Part 4 Nursing Care: Theory and Practice
• Index