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Accompanying them home : the ethics of hospice palliative care
Abstract
This inquiry, which employed a narrative research approach, critically explored the ethical dimension of hospice palliative care. Hospice palliative care is the profession specifically developed to care for the dying. The development of this practice has grown significantly since the 1980s in Australia, yet ethical inquiry into this professional practice has largely focused on particular issues, problems or dilemmas, such as euthanasia. Although particular ethical issues are important considerations, a broader investigation of the ethics of hospice palliative care practice has not been given sufficient consideration in the growing accumulation of the research literature in Australia. Jennings (1997) surmises that “systematic reflection on ethics in the hospice field is curiously underdeveloped” (p. 2). This study goes someway towards filling this gap. In building upon the Pallium research by European scholars and integrating a social practice framework (Isaacs, 1998) this inquiry provides an alternative account of the ethical agenda and one which has privileged an internal exploration, rather than assume that the ethics would be the same as any other health care modality or to simply adopt a dominant, principles-based approach. These internal explorations were located in the storied accounts of thirty interdisciplinary hospice palliative care professionals.
This thesis provides a thorough, textual conversation into the realm of ethical caregiving at the end of life. Several key insights were illuminated. Firstly, total care must be central to the philosophy underpinning hospice palliative care practice, but this concept and practice of total care was being eroded and contested. Secondly, a predominantly modernist account of personhood was located in the narrative accounts. This modernist account of personhood was thought to be insufficient for the practice of total care and needed to be reconceptualised. An embedded ontological account was provided which would assist with the understanding and practice of total care. Thirdly, initially it was thought that there was no common, shared understanding of the purpose of the practice. It was suggested that the profession was “wandering in the wilderness” when it came to the aim of its practice. However, the professionals did share a common telos (aim towards a good) and it was overwhelmingly relational. This led to the proposal of a new telos for hospice palliative care practice centered on the creation and maintenance of unique relationships which would assist people in their final stage of life. Lastly, the ethical frameworks which guided practice for the professionals were presented. In these frameworks it was significant values (acceptance of human mortality, total care and honest and open communication) and relationships (how we treat each other) which played the main role in what constituted hospice palliative care ethics. An account of a hospice palliative care ethical relationship was provided which included a proximity stance of in-between. Overall, any ethic for hospice palliative care must have at the heart the relationship between professional caregiver and living-dying person. The relationships in this social practice, between each other, accompanying one another, are our ethical compass.
This thesis concluded that hospice palliative care, as a social practice, has a rich ethical dimension as understood and articulated by its professional members. These insights have resulted in the construction of a new ethical framework reflecting, formalising and adapting the ethical dimension as understood by its professional members. This ethical framework - A Relational Ethic of Accompanying - is needed to help maintain, sustain and protect the unique identity of this profession. This framework adds to the “moral vocabulary” (Jennings, 1997) and “moral specificity” (ten Have & Clark, 2002) of hospice palliative care practice. In addition, it would provide important guidance to palliateurs reflecting on how best to provide quality, compassionate and ethical care at the end of life.
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Proefschrift Radboud Universiteit Nijmegen. Lit.opg. - Samenvatting in het Nederlands.
The Dying Process: Patients' Experiences of Palliative Care. Julia Lawton. London: Routledge, 2000. ix. 229 pp.
Ethnography is advanced as a methodology that links the humanities and social sciences with the health sciences. Ethnography deepens the study of human suffering by refraining the experience of illness as interpersonal processes in a moral context. Because ethnography's validity depends on the skills and training of the ethnographer, medical ethnographers must be effectively prepared to conduct research studies. This will become a serious issue in the development of qualitative research within the health sciences.
This paper aims to describe and analyse the ideology of the 'good death'; an ideology central to the modern hospice movement and underpinning many of the challenges to the medical management of dying and death. The development of the concept of the 'good death' will be traced from the work of the French historian, Ariès, through the influential writings of Kübler-Ross, to the contemporary contributions within the sociology of dying and death. The good death concept now holds a diversity of definitions and meanings that unify around the ideal of dying with dignity, peacefulness, preparedness, awareness, adjustment and acceptance. The paper has as a central concern the dominance of the 'good death' ideology, leading to the labelling of 'good' and 'bad' patients, and consequent attempts by caregivers to shape the lives of dying people. This paper suggests that the ideology of the good death legitimates a new form of social control within which socially approved dying and death are characterized by proscribed and normalized behaviours and choices. This ideology dominates the social management of dying and death within the hospice movement and increasingly within the broader community, and powerfully constrains the choices of dying people.
Book Review
No Longer Patient: Feminist Ethics and Health Care Susan Sherwin Philadelphia: Temple University Press, 1992, xi + 286 pp.
The North American culture of medicine advocates explicit disclosure of cancer diagnoses to patients and frank planning for end-of-life issues. Despite widespread adherence to these values, however, physicians may be unaware that these values are relatively new to American medicine. They may not see that such values are in fact part of the "culture" of biomedicine as it is practiced here, and as such, may be very foreign or even antithetical to patients and families from other cultures. Likewise, explicit planning for the end of life may be questioned or rejected by North American patients from ethnicities who have felt excluded from American medicine. In this article the author presents several cases to show how the dominant biomedical culture's approach to the end of life becomes problematic for patients from cultures who place a higher value on family connectedness than on individual autonomy and from cultures who may value life at all costs over an easy death. The author suggests ways to step back from the unexamined practice of privileging individual autonomy and offers steps toward a collaborative construction of conversations with patients and families from cultures who define identity in terms of the family. (PsycINFO Database Record (c) 2012 APA, all rights reserved)
In At the Will of the Body, Arthur Frank told the story of his own illnesses, heart attack and cancer. That book ended by describing the existence of a "remission society," whose members all live with some form of illness or disability. The Wounded Storyteller is their collective portrait. Ill people are more than victims of disease or patients of medicine; they are wounded storytellers. People tell stories to make sense of their suffering; when they turn their diseases into stories, they find healing. Drawing on the work of authors such as Oliver Sacks, Anatole Broyard, Norman Cousins, and Audre Lorde, as well as from people he met during the years he spent among different illness groups, Frank recounts a stirring collection of illness stories, ranging from the well-knownâGilda Radner's battle with ovarian cancerâto the private testimonials of people with cancer, chronic fatigue syndrome, and disabilties. Their stories are more than accounts of personal suffering: they abound with moral choices and point to a social ethic. Frank identifies three basic narratives of illness in restitution, chaos, and quest. Restitution narratives anticipate getting well again and give prominence to the technology of cure. In chaos narratives, illness seems to stretch on forever, with no respite or redeeming insights. Quest narratives are about finding that insight as illness is transformed into a means for the ill person to become someone new.
This book is different from the majority of books on methodology in two respects. First, it does not focus exclusively on either quantitative or qualitative approaches to research, but instead aims to discuss recent developments in social research methods across the quantitative/qualitative divide. Second, while it aims to give practical guidance on the techniques for carrying out research, and therefore focuses on methods, it also explores current theoretical, methodological, and epistemological debates that (should) underlie the practice of research.
This paper addresses cultural dimensions of end-of-life care in Canada and the USA. In both countries contemporary health care providers commonly encounter patients with quite variable understandings of what constitutes compassionate end-of-life care. Participation in particular ethnic and religious groups can have a significant effect upon how patients and their families communicate with health care providers, make decisions about treatment alternatives, engage in advance care planning, and frame moral deliberations. Much of the contemporary literature in the field of bioethics emphasizes the importance of truth telling, the principle of autonomy and the significance of patient choice, the value of advance care planning, and the right to have treatment withdrawn or withheld. However, a growing body of scholarship on the cultural dimensions of end-of-life care reveals a plurality of attitudes towards what constitutes appropriate forms of communication and decision making. While there are limits to the kind of social practices and moral claims that should be accommodated in liberal democracies, health care providers should take steps to ensure that they are providing culturally sensitive end-of-life care.
This article considers the role of the dying in negotiating their own after-death identities. Living with a terminal illness has many profound physical and emotional effects on both individuals themselves and family and friend;, it presents the dying with the constant challenge of reassessing and reordering their self-identities as their bodily capabilities decrease. Specifically, this discussion focuses upon respondents' experiences of anticipating and planning for their own deaths. Individuals often spoke of wanting to make life as easy as possible for their loved ones after their deaths. Although primarily intended to help others, it is suggested that such effort also had personal benefits because it meant that respondents actively participated in the process of negotiating the memories they would leave behind. Such work undertaken by the dying could later be developed further by the bereaved in the process of negotiating their loved ones' after-death identities. This article considers the extent to which the dying themselves can be seen as 'co-authors' in their own 'last chapters'.
In 1957 Cicely Saunders wrote her first paper on the care of the dying. Two years later the vision of the hospice she was to found, St Christopher's, was already highly developed and had been set down in detail. There followed a lengthy period of lobbying, organizing, fundraising and planning before the first patients entered the hospice in the summer of 1967. This paper explores some of the key events and circumstances of this important decade and shows that, even before St Christopher's Hospice had begun operational life, it had already become a source of inspiration, not only to others elsewhere in Britain, but also to individuals and groups overseas, particularly in the United States. A narrative is revealed in which faith, reason and practice are closely intertwined and where the discourses of medicine and religion are at times in tension. A clear picture emerges of strategic intent, wherein the endorsement of key figures in the British establishment plays an important part. Linking 'vision' and 'strategy' is an assiduous attention to detail, accompanied by prodigious personal energy. Commentators frequently ignore the enormous achievements and the extent to which the 'hospice movement' was taking form even before St Christopher's was operational. Analysis of developments in the decade 1957-67 reveals further insight into the complex interplay between the charismatic influence of Cicely Saunders and the wider environment in which her work is located.
This book defends an expressive-collaborative model of morality that challenges common assumptions in philosophical ethics. Morality is best revealed in practices of responsibility that express shared understandings about who we are, what we value, and to whom we are accountable for what we do. Morality is collaborative as we reproduce or shift our moral understandings together in many daily interactions of social life. For this reason, moral practices cannot be separated from other social practices, nor moral identities from social roles and institutions in particular ways of life; morality is not socially modular. But not everyone has the same power to set or change moral terms, and differently valued social-moral identities with different responsibilities and privileges are the rule in human societies. This book argues for empirically informed and politically critical ethics that aims for transparency about the moral significance of social differences including, but not only, gender differences. The book responds to the work of major philosophers of the 20th century, such as Bernard Williams, John Rawls, Robert Goodin, Charles Taylor, and Alasdair MacIntyre, while putting the tools of feminist epistemology and ethics to use. It also challenges uncritical assumptions in academic ethics about what we are in a position to know and for whom we are in a position to speak. This text is the second edition and contains an updated view of the state of moral philosophy, a new chapter on the moral and epistemological significance of public projects of truth-telling, and a concluding response to some common questions about the book.
It is argued that palliative medicine may be in danger of developing into a specialty of 'symptomatology'. Such a specialty would be confined by the limits of the medical model and its particular view of illness. The potential for physicians working in palliative medicine to go beyond symptom control to creating conditions where healing at a deep personal level may occur for the individual patient, and the practical and personal implications of this, are discussed.
This is a qualitative exploration of non-professional perceptions of 'good' death. Hospice patients and the relatives of deceased patients provided story examples of 'good'/'not good' deaths which had happened to people known to them. Contributions were analysed in order to identify perceptions of what were the core features of 'good' death and how 'good' death was formulated in real life contexts. Patients provided a more limited range of features in their contributions than did relatives, suggesting divergent expectations. Of particular interest was how those 'good' death 'ingredients' were mixed in the crucible of the dying experience. Three frames of reference were identified within which participants understood death and dying—an acknowledgement of tension and paradox, contextualiztion within the life lived and an attitude of flexible realism. What emerged was a dynamic process whereby participants portrayed attempts to get as near as possible to what is desired within the often changing limitations of life. 'Good' death terminology fails to convey adequately the pragmatism and complexity of this process. 'Good enough' death may convey more appropriately that preferred goals do exist but that preferences often have to be negotiated in a context of limitation and contingency.
This paper focuses upon the emergence of a new phenomenon in the late nineteenth century: institutional provision for the 'respectable poor' medically certified as 'dying'. For the first time this group was identified as having special medical, nursing and spiritual needs, which could only be provided by trained staff through an institutional medium. Through a comparative study of three institutions founded in London - St Joseph's Hospice, the Hostel of God and St Luke's House - this paper aims, firstly, to consider why it is important to look at late nineteenth century homes for the dying; secondly, to understand why they were set up during this period; and thirdly, to explore their foundation and development up to 1914. It argues that the homes were essentially a response to perceived deficiencies in medical, domiciliary and spiritual care for the dying 'respectable' poor: as religious and philanthropic institutions, the homes were profoundly influenced by wider developments in these areas. Within the homes, spiritual care was viewed as the most important part of their work. Although they professed to be non-sectarian, the distinct denominational basis of each home (Catholic, Anglo-Catholic and Methodist) had a profound impact on perceptions of death and dying. Particularly significant are the accounts of patients, written by various members of the homes, which reconstruct the patients' deathbed experiences in certain ways.
It is a common misunderstanding that health promotion and palliative care are opposite initiatives when, in fact, they can and should enjoy a complementary relationship. This paper discusses the core ideals of health promotion and outlines the nature and shape of these as they might appear in palliative care practice. The work of the health-promoting palliative care unit at La Trobe University is provided as an example of this public health practice. Current and future problems are identified.
This book brings together a diverse group of scholars who share valuable qualitative research techniques and rich case examples. Qualitative methodologies and the paradigms that guide them can be seen as both an alternative and a complementary approach to quantification and positivism in social, personality, developmental, health, clinical, counseling, community, and school psychology. Qualitative methodology seen as an alternative approach seeks to answer questions that cannot be answered through quantification, random sampling, probability testing, and other measures, which seek to control the environment of the participant. Viewed as a complementary approach to research, qualitative methodology can be utilized alongside quantitative methods, bringing a new depth and riches to data analysis. The wide variety of innovative techniques and theoretical perspectives offered in this volume will challenge readers to think about and expand on their understanding of qualitative research and its continually emerging applications. (PsycINFO Database Record (c) 2012 APA, all rights reserved)
Michael Kearney Mercier, £9.99, pp 191 ISBN 1 86023 033 4This is a moving journey through the fears that face our patients and lie beneath our everyday surface. Kearney feels we live increasingly separated from the intuitive side of our nature and that our “fix it” approach fails when faced with deep fears. He believes that only by helping patients to give space to those deep fears will they achieve the dignity of accepting help. He describes how he uses imagery to help them reach down into those fears and illustrates this …
INTRODUCTION We all know what Kant means by autonomy: “the property of the will by which it is a law to itself (independently of any property of the objects of volition)” (G, 4:440), or, since any law must be universal, the condition of an agent who is “subject only to laws given by himself but still universal” (G, 4:432). Or do we know what Kant means by autonomy? There are a number of questions here. First, Kant’s initial definition of autonomy itself raises the question of why the property of the will being a law to itself should be equivalent to its independence from any property of objects of volition. It is also natural to ask, how does autonomy as Kant conceives it relate to more familiar notions of freedom. For example, consider Locke’s conception of freedom as the condition of a person “to think, or not to think; to move, or not to move, according to the preference or direction of his own mind,” rather than according to the preference or direction of any other person. What is the relation between autonomy and this traditional conception of freedom as the liberty of an agent? And what is the relation of autonomy to the traditional conception of freedom of the will; that is, the condition that obtains, as G. E. Moore puts it, if, “wherever a voluntary action is right or wrong … it is true that the agent could, in a sense, have done something else instead,” or in Kant’s own terms, “freedom in the transcendental sense, as a special kind of causality … namely a faculty of absolutely beginning a state, and hence also a series of its consequences” (PureR, A 445/B 473)?.
This paper focuses on the circumstances of death and dying in old age. It considers the ways in which social policies and social gerontology reflect the values of independence, autonomy and citizenship, and it considers the implication of these values for older people who are dependent on others for care and support at the end-of-life. It discusses the complexity of the relationship between ageing and dying, by exploring recent research from the fields of social gerontology and the sociology of death and dying. Arguing that a long-term perspective is required to understand fully the circumstances of older people's deaths, it analyses the third age/fourth age dichotomy as a conceptual model. The task of developing knowledge about the links between ageing and dying requires consideration of moral and ethical principles. The article examines the conceptual frameworks developed by feminists who argue for an ethics of care as a central analytic referent in social policy. The feminist ethics-of-care approach provides a powerful critique of the moral framework of independence and autonomy as characterised in contemporary policies and practices. Feminist ethicists argue that the inter-relatedness of human beings and the importance of the social context have been overlooked in the preoccupation with individual rights – as reflected more generally in policies and social life. It is argued in the paper that the need for care at the end-of-life highlights these shortcomings. The feminist ethics of care has considerable potential to illuminate our understanding of dependency and care, and to generate both new approaches to policy and practice in health and social care and theoretical perspectives in gerontology.
The Kantian Conception of AutonomyProcedural Theories of AutonomyNeo-Kantian TheoriesPsychological ApproachesThe Implications for Health Care EthicsReferences
Narrative and identity in the closing chapterAuthoring the end: suicide and advance directives