Abstract
Dependence and Autonomy in Old Age (Cambridge University Press, 2003) grew from work originally begun under a grant from the Personal Autonomy and Long-term Care Initiative of the Retirement Research Foundation (RRF) in 1987. This grant was a surviving part of a larger, collaborative proposal to study the social reality of autonomy in long-term care settings using an ethnographic approach. I was to be involved in this project as a philosopher who brought strength in clinical ethics and bioethics to the project. My task was to articulate a theoretical framework for defining actions and behaviours of individuals as well as institutional practices that enhanced or thwarted autonomy of old people living in nursing homes. The overly ambitious goal of the original proposal was to design intervention strategies to increase awareness of the complex dimensions of human existence that are involved in respecting persons who require various forms of long-term care. Although the original proposal was rejected, RRF invited me to submit an amended proposal to undertake research on the philosophical component that framed the original application. In 1988 I produced a monograph for RRF with the title Autonomy and Long-Term Care. This text formed the basis for the book published by Oxford University Press in 1993 under the same title.
Despite many requests for a paperback edition, Oxford University Press chose to keep the book in print as a hardback. Cambridge University Press (CUP) expressed interest in a paperback version and an arrangement was negotiated permitting a revised edition of the work to be published in paperback by CUP in 2003 under the title Dependence and Autonomy in Old Age: An Ethical Framework for Long-Term Care. A Portuguese translation (Dependência e autonomia na velhice: Um modelo ético para o cuidado de longo prazo) was published by Edições Loyola in São Paulo, Brazil in 2008.
Although this work in gerontological ethics evolved over a long period of time, it was not the primary thrust of my academic research, which is clinical bioethics and philosophy of medicine. I thus came to the topic obliquely, but with a rather unique background for someone working in what was then the fledgling field of bioethics. I had a strong background of work in social phenomenology and had experience with nursing homes as an ethics consultant involving transfers of patients between nursing homes and hospitals, where I provided ethics consultation services. I also had considerable experience in psychiatric health care in a state mental health facility, where I functioned as an ethics consultant. This was one of the duties associated with my joint appointment in the Department of Psychiatry at Southern Illinois University School of Medicine. So I came to the project with familiarity of some of the complexity and challenges associated with caring for people who are dependent in various ways. Perhaps more importantly, as a clinical ethics consultant I had first-hand experience of some of the practical challenges associated with improving the ethics of patient care. As an ethics consultant, I regularly encountered the gap between ethical theories, principles, and concepts and the actual circumstances of ethical deliberation and decision-making in the context of clinical care.
When I received the RRF grant, I did a comprehensive review of the ethics and geriatric/gerontology literature. This literature review showed not only that the ethics of long-term care was largely undeveloped as a field, which probably explains the RRF's initiative on autonomy and long-term care, but also raised questions for me about how poorly standard accounts of autonomy helped to frame the ethical care of dependent persons. I was surprised and intrigued to find that many ethnographic studies and narratives about experiences of care-givers, both professional and family members, and individuals receiving institutionalized long-term care were highly relevant for my project and that these stories resonated with my own (rather limited) experiences of nursing home life and my experiences in doing clinical ethics. It struck me that these observations and narratives expressed concerns and revealed features of the life world within the confines of disability and institutional settings that were ethically important, but typically were overlooked in the ethics literature.
After reviewing the long-term care and gerontology literature at the time, I came to the conclusion that the ethics of caring for dependent individuals was not only relatively undeveloped, but that it nonetheless prominently featured concepts imported from acute care medicine, including the central concept of informed consent. Reading beyond the ‘ethics articles’ showed me that a range of concerns and themes that are critical for understanding and respecting individuals with disabilities were recognized, but not thought to have direct relevance for ethics. The split between the limited salience of conventional applications of the bioethical work on autonomy for addressing the actual ethical challenges involved in long-term care and the rich ethnographic and narrative literature of aging and long-term care suggested that an alternative account of autonomy, one that is grounded in everyday life, was needed.
Drawing on my experiences in psychiatric settings and visits to nursing homes, which primarily consisted of observations of residents and their encounters with care-givers and families as well as conversations with day-to-day care providers for dependent individuals, I came to the conclusion that if the principle of respect for autonomy in the context of aging and dependency was to have any meaningful role in these settings, then it would have to be reframed in a way that made it practically useful for addressing the wide range of everyday ethical problems that arose. It had, in other words, to be anchored in some phenomenologically sound view of dependence and long-term care. This belief was reinforced by my experience as a clinical ethics consultant, an experience that showed me that too rigid a reliance on theoretical approaches seldom provides much guidance in practical ethics. The paradox or, indeed, contradiction that I saw in the ethics of long-term care was created by dissonance between the idealized or abstract theories of autonomy and the reality of actual autonomy that is laced with a variety of forms of dependence. Standard understandings of autonomy presuppose an independent individual who has an intact set of well-functioning capacities for action, reflection and decision-making. While these theories are problematic in many everyday applications, they are especially so in the settings of dependency that comprise chronic care.
I drew two conclusions from this. First, the actual settings and circumstances for delivering long-term care should be the primary stage for reflection on the meaning of respect for autonomy in long-term care. These concrete features of long-term care, I concluded, should be given priority over the conventional ways that the theories and principles of autonomy were being applied in the emergent ethical writing on long-term care. I regarded the tendency to articulate the ethical importance of a commitment to the liberty rights of individuals who need nursing care services as somewhat beside the point for many individuals who actually require long-term care. Many of these people are too confused, frail or impaired cognitively to be able to express clear preferences or exhibit rational decision-making. The ethical challenge, it seemed to me, was to increase the sensitivity and improve the ethical environment of care for these individuals and not to postulate how they might wish to be treated were their capacities intact. I saw little point in working to create an adversarial mistrust in care-givers by defending the rights of dependent persons by focusing on legal protections.
Second, because the dependencies and disabilities of individuals who need supportive care are exceedingly heterogeneous, involving a wide range of types and degrees of severity, and because the structure of institutional and home care services also varies widely, an adequate ethical approach to the concrete problems of caring for dependent adult individuals would require a shift in perspective or new framework within which to think about dependency and long-term care. To be successful, such a perspective would have to provide a practical advantage for assessing and designing programmes and policies for the care of dependent adults.
During the early course of my grant, the RRF held regular meetings of grantees, which proved incredibly invaluable in establishing a network of individuals with whom to communicate and discuss various aspects of the research. These meetings were critically helpful for me, because they gave me access to some of the best gerontol-ogists with whom I could discuss my emerging ideas and allowed me to benefit from their comments and criticisms. At the first of these meetings, I met Charles Lidz, a distinguished medical sociologist, who had done pioneering empirical research on informed consent and was currently working with Lynn Fischer on a large-scale ethnographic study of autonomy in several nursing homes. I used to tease him that his study was ‘exactly’ what our original application should have been, but alas was not. When I presented some of my early work that showed some serious shortcomings with the standard applications of autonomy and independence in long-term care, he immediately approached me to see if we could work together to develop a clearer framework for interpreting the observations that he and his team were recording. His team shared with me their observations, which provided a very rich basis upon which to test and corroborate the framework that was emerging in my own thought. The first products of this research were a series of papers and a monograph, Autonomy and Long-Term Care, was completed for the RRF in late 1988. This monograph formed the basis for the book with the same title that was published by Oxford University Press in 1993.
It also defined and refined the project's goal that was emerging in my thinking, namely to shape an account that structured a practical framework for thinking about and designing care for dependent individuals rather than as an ethical theory of autonomy under conditions of dependence.
Actual autonomy is the term I came to use to characterize the non-ideal expressions of autonomy in everyday life. So regarded, the concept of actual autonomy has to account for the fact that, as individuals, we develop relationally and that our actions, beliefs and thoughts are invariably shaped by biological, psychological as well as social factors. These ideas now have greater currency in ethics and bioethics owing largely to feminist approaches to ethics and the ensuing theories of care and relational autonomy. At the time I was doing this work in the mid-1980s, however, this literature was less developed and I decided that a theory of caring or a non-autonomy account of ethics would not help provide the practical framework to guide gerontologists, geriatricians and long-term care providers to rethink their practices and approaches to common patient situations. It also seemed to me that feminist approaches, although compatible with many of my own commitments, harboured other agendas that could distract from my primary focus. Finally and, perhaps, most importantly, I was committed to framing my account in terms of autonomy, given that autonomy in long-term care was the theme under which the grant was funded.
Hence, the book, Autonomy and Long-Term Care published by Oxford University Press in 1993, set out a critique of liberal theories of autonomy based on the claim that the picture of the autonomous agent that provides the normative ground for these theories is too abstract. I proposed an alternative account of autonomy that I characterized less as a theory of ethics than an ethically justified practical framework to critically examine the structures of interaction with persons who are less than ideally autonomous, including care-giving interactions. The account made thematic the phenomenon of autonomy as it exists and is experienced in the social world of everyday life. The account is thus based on a social phenomenology of everyday life and it seeks to identify key features of our social agency that have relevance for the ethics of long-term care in light of the ethnographic and narrative literature of nursing homes and long-term care that I had researched. The work was thus written as a contribution to practical or applied ethics in the sense that offers a way to view autonomy concretely, which, I argued, liberal theories of autonomy tend to obscure. This way of viewing autonomy makes sense of the broad range of dependencies that inevitably accompanies the everyday life of those who need long-term care and, more importantly, provides suggestions for remedial action in improving the quality of care of dependent adults.
While the framework that I developed is philosophical, it was structured from its inception as a practical framework within which care-givers can rethink their approaches to the chronic care of people with disabilities. This framework is conducive to furthering research into problems associated with respecting the autonomy of individuals whose capacities are compromised to such an extent that they require long-term care. The perspective that I adopted is thus committed to the view that concrete manifestations, rather than the abstract constructions of autonomy, should be the primary guide for developing the ethics of long-term care. Theoretical models of autonomy, inspired by liberal theory, produce accounts that exclude many of the conditions of dependence that comprise actual autonomy, and fail to provide a context for defining the complex ethical problems in long-term care.
I identified four thematic dimensions as critical for understanding the ethical problems associated with autonomy of dependent individuals: space, time, communication and affectivity. Much of the second half of the book shows how these dimensions reveal aspects of our autonomy that always occur under concrete conditions of dependence. The work suggests how alterations in social practices and institutional arrangements might better accommodate the concrete expressions of autonomy for individuals whose dependencies require significant degrees and types of reliance on others for activities of daily living and for getting on in the world. Since these dimensions are often overlooked, I applied this analysis by examining a case example of an ethnographic narrative of a long-term care setting. This discussion shows that the critical use of the framework that I developed provides more significant insight into the ethical challenges and problems plaguing that institution than would be achievable through a more standard application of an idealized theory of autonomy.
Dependence and Autonomy in Old Age thus has a complicated history. It reflects, to some extent, my increasing commitment to and work in clinical ethics and ethics consultation. As I elaborated the picture of actual autonomy in old age, my views were shaped by my experiences in complex acute care situations, where ethics has to be first and foremost practical and relevant to the problems and questions that arise within the context of patient care. In these settings, theory has limited use. This work reinforced my growing realization that the phenomenon of and problems associated with autonomy and dependence in the context of long-term care and aging are far more complex than is routinely captured in liberal theories of autonomy. I am confident that many of the elements that make up the picture of actual autonomy that are delineated in this work are central to any philosophical theory that adequately accounts for autonomy as a concrete feature of persons developing, interacting and living in the world of everyday life.
Footnotes
