Critical Interventions in the Ethics of Healthcare

Challenging the Principle of Autonomy in Bioethics

Dave Holmes, Stuart J. Murray

• Publisher: Routledge
• Year: 2016
• eBook ISBN: 9781317157267
• Topic: Medicine
• Subtopic: Law Theory & Practice

Critical Interventions in the Ethics of Healthcare argues that traditional modes of bioethics are proving incommensurable with burgeoning biotechnologies and consequently, emerging subjectivities. Drawn from diverse disciplines, this volume works toward a new mode of discourse in bioethics, offering a critique of the current norms and constraints under which Western healthcare operates. The contributions imagine new, less paternalistic, terms by which bioethics might proceed - terms that do not resort to exclusively Western models of liberal humanism or to the logic of neoliberal economies. It is argued that in this way, we can begin to develop an ethical vocabulary that does justice to the challenges of our age. Bringing together theorists, practitioners and clinicians to present a wide variety of related disciplinary concerns and perspectives on bioethics, this volume challenges the underlying assumptions that continue to hold sway in the ethics of medicine and health sciences.

PART I
Clinical Interventions

Chapter 1
My Life? My Choice? Ethics, Autonomy, and Evidence-Based Practice in Contemporary Clinical Care

Kim Walker

We pass our days on the surface of a little star which drifts aimlessly through endless skies, inventing such fictions as we require to make it through the day and persuade ourselves of our significance and meaning. Until at last, weary of its peculiar little local experiment, the cosmos draws another breath and moves on. Then we disappear without a trace. “Knowledge,” “obligation,” “justice”—these are so many obsolete inventions of the little animals, now useless vapours dissipating in interstellar space. (Caputo 1993, 17)

On Life and Our Lucky Stars

True to form and function, they kept us waiting in the waiting room. Women came and went from the door leading to the clinics behind the receptionist’s desk. Time was stalled. At last, Donna was called by a cheery middle-aged woman who had clearly met her before. When we got into the examination room, she asked my sister to disrobe and don the hospital gown, “the surgeon won’t be long,” she said. We waited, and then waited some more again. The woman, a nurse, it turns out, popped in a couple of times to tell us the surgeon “shouldn’t be too much longer.” The waiting was excruciating; institutionalized torture masquerading as business as usual. Suddenly, all at once, a trio of women burst into the room. The surgeon looked as if she was on her way to the beach, so casual was her attire; the other two were uniformed in the modern anonymous fashion. Brief introductions all-round; an awkward pause. And then: “I’m afraid it is cancer, Donna.” A gush and rush of muted grief and tattered belief as tears welled and Donna grabbed my hand as if to steady herself. Disaster had struck; Donna’s guiding star vanished in that ugly, jagged moment and she was cast asunder, bereft.1 The abyss yawned and invited her into its infinite murk. At once we knew—beyond all doubt—her life was forever to be changed. My sister could no longer indulge the long-held and hard won delusion that she was the main author of her life. The omniscient and omnipotent one had snorted with contempt; in this moment He gave Donna a nasty reminder of her precarious mortality, of the sheer contingency of life and, ultimately, the truth for each and every one of us that our being-in-the-world is irretrievably a “Being-towards-death” (Heidegger 1987, 235–67). Donna’s self, her sense of herself as invincible and “in control,” was no longer something she could happily take “for granted.” It was—fleetingly at least—suspended in that truly appalling chasm between faith and fate; being and not-being; presence and absence. And for me, her older brother who had insisted he be there with her for “the moment of truth” and who now sat alongside this suddenly shattered soul, the brute being of Being—our always and only living-in-the-moment—was made mightily all too real. The evidence was in (but not the worst of it), autonomy was out (my life? my choice?), and ethics (the deeply moral dimension posed by what was soon to be re-diagnosed as an incurable cancer) posed its founding questions: What ought she to do? What ought we to do?

And from this mise-en-scène of a woman—but not just any woman—struck a terrible blow to my musings. For this once private and personal tale is the same but different from countless many in which every one of you will hear an echo in your own lives. A deep sonority with our shared humanity is what I strive for in this text, so what better way to utter a call to the other but through a tale of the wounded other; she whose life has been shipwrecked against desire and need, just when it seemed it could only get better. And I have begun with this tale to open the way for an exploration of a new—or perhaps not so new—mode of ethical comportment in contemporary clinical care, a mode in which the special and local are prioritized over the general and the universal. Most people’s lives are parochial in the extreme, and, mostly, their universe is tiny and incestuous, peopled with only a few that really matter, and many more that matter only a little, if at all. This reality underpins much of what follows.

My thinking winds around three premises (none of which are final, all of which can be contested): first, I am against Ethics (or Bioethics, Medical Ethics, Clinical Ethics) as the originary moral ground on which clinicians should, indeed must, stand. Rather, I am for an ethic(s) of care without an E, devoid of its piety and stripped of its philosophical profundity. Because I too share Komesaroff’s concern that “there appears to have been no study showing that bioethical theory has produced a beneficial impact on medical decision making, or indeed that it has produced valuable effects in other working ways for doctors (and nurses) or their patients” (1995, 67). With Ramsey I believe that ethics in the clinical field must “deal as competently and exhaustively as possible with the concrete features of actual moral decisions of life and death and medical care” (2002, xxii). And I side with Elliot when he notes that “we have become accustomed to writing and talking in bioethics, where relationships between strangers are in some ways the paradigm for our moral language. The impersonality of conventional bioethics writing also emerges in its (implicit) view of moral agency” (1999, xxix). Feminist writer Shildrick captures neatly for me the central problem: “the field of morality in which biomedicine roots itself has tended to be a fairly restricted one in which the emphasis is on those theories most likely to yield relatively clear guides to action” (1997, 73). Unfortunately, the sorts of actions arising from such theories tend to diminish, rather than elevate, the ontological uniqueness and the exquisite specificity of every individual “patient’s” moral condition.

Secondly, I am also against Autonomy as the liberal humanist and political ideal our patients should emulate, and that our health professionals should expect of them (and of themselves). The notion of the human agent as autonomous and sovereign—the liberal individualist—is deeply appealing to modern man and, in fact, defines him (Grosz 1995, 51–2; Johnson 1994, 5–15; Mansfield 2000, 13–24). Instead, I see the subject “as neither sovereign nor autonomous but as always caught up in a network of responsibilities to others” (Elam 1994, 105). I want to run against the grain of much conventional wisdom in healthcare that always positions the patient as endowed with relatively inviolable rights or equally problematically situates the doctor or nurse as a self-defining and regulating professional also endowed with rights. Rather, why can’t we move beyond the idea of an autonomous individual and work, instead, with the vulnerable, needy he or she who seeks our help and wants our care? I urge us to recognize the “heteronomic force of the other” (after Caputo 1993) whereby our obligation to each other, each palpable, enfleshed, mortal, and fragile other, is something we cannot sequester or abjure in the name of an autonomous, universal, disembodied, “rugged” individualism. I suppose I yearn for times now past, times perhaps no longer possible in our clinical settings beset as they are by rapidity of throughput and diminution of contact, as sheer force of volume and need stretch capacity to its limits. The treadmill that is healthcare today degrades the sense of community and ethos of care that once pervaded even the busiest, largest, and most austere and auspicious of hospitals; the industrialization and commoditization of health has much to atone for.

Thirdly, and finally, I am also against Evidence-Based Practice (EBP) as the governing “episteme” and the shining light for better outcomes in clinical care. Of course these days I am most certainly not alone here as an avalanche of writings has been launched in the last decade, with one journal alone charting over no less than ten editions the rise and rise of EBP and enlisting critique from its antagonists.2 The scholarly debate in the halls of academe about the place of EBP is fecund indeed; yet it summons barely a flicker of interest amongst most clinicians in the hurly-burly of daily clinical life. Consequently, the idea and practice of EBP suffer from some rhetorical tensions, and in recognizing this I want to play a little deconstructive manoeuvre and reverse the order of its terms (after Rolfe and Watson 2008). Doing this inverts the violent top-down hierarchy—where evidence is imposed on practice—and gives us the idea of practice-based evidence. While this might seem like mere sleight of hand, it is much more. Both evidence and practice as terms coexist in a mutually binding relationship (like theory and practice and other masterly binaries). But the order in which they appear sets up a tension between them that never quite manages to resolve neatly in terms of letting one have the upper hand because the one without the other is nothing. Prioritizing practice—everyday, ordinary (or extraordinary) clinical practice—as the basis for evidence for future practice opens up a re-appraisal and reinstatement of casuistry: case-based healthcare decision-making.

This approach fully recognizes the ineffable uniqueness of every clinical encounter with each irrepressibly singular human being; it deeply appreciates the unquenchable need each and every one of us has when we are “laid low” to be held in someone else’s regard and be offered a “helping hand” out of care—in the Heideggerian (1987, 191–200) sense of concern, solicitude, being-alongside—rather than simply “being nice” (Walker 1997) or just doing our job. Tonelli (2006) and colleagues (Borry et al. 2006; Montgomery Hunter 1989; Mykhalovskiy 2003; Porta 2006; Tannenbaum 2006) call too for a return to casuistry as a response to the limitations of EBP. As Montgomery Hunter reminds us, “the individual case is the touchstone of knowledge in medicine [and I would add nursing and the allied health professions]” (1989, 194). But as she also cautions, “[d]espite an enormous number of reliable, well worn diagnostic and therapeutic paths, there is never enough certitude” (1989, 195).

This “will to certitude” has been the mission of EBP, and it underwrites much of the current obsession in healthcare with risk aversion and containment, as well as the quality and safety agenda and industry both of which consume far more energy and resources than they warrant in my observations. Indeed, they tend to shift clinicians’ focus and energies away from care and the ethics of care, much to the detriment of all.

A Disquiet

All this is well and good, you might say to me (even as I say it to myself). But I have misgivings that the intellectual substance of the scholarly debates around each of these weighty words—ethics, evidence, and autonomy—falls mostly on those who have laboured hard to construct the debates in the first instance; they largely fail to reach those who could and should most benefit by them: the clinicians at the sharp and dangerous point of care. I am excruciatingly aware that the vast majority of my colleagues whose quotidian lives are consumed with the busyness of work on the clinic floor will never read this anthology and neither will they care much at all that it has been written. Clinical hospital culture is stained with a perennial anti-intellectualism (Walker 1997; 2000) which disallows substantive analysis and debate about many issues that matter much in clinical care. Such debate is perceived by many clinicians—and perhaps rightly so—not to be oriented around the pragmatic, the mundane, and the everyday. This is something of a shame, both in the sense of our colleagues “missing out,” but also in the sense that we ought (those of us who write) to feel shamed if we cannot find ways to better engage our colleagues in such debate. Thus my return to the local in pursuit of the general; a focus on the present-at-hand (Heidegger 1987) at the expense of the “from on high”; a concern with material, contemporary realities, rather than abstract concepts (although clearly the abstract underwrites even the most trivial and concrete instance of the real).

Thus we are headed toward imagining a new form of ethics for contemporary healthcare that, in effect, is a return to an old, if not old-fashioned and even slightly nostalgic notion of “care for and obligation to the other.” This concern with obligation arises out of nothing less profound than our being-in-the-world with others (after Heidegger 1987 again); those without whom there would not be a world at all. After all, healthcare is through and through a human service; human beings are both the object and subject of our concerns. In these postmodern times it is salient to remind ourselves that the ethical life is perhaps even harder to define, negotiate, and evaluate than it ever has been, so much have we and our world changed over the last century.

Against Ethics as Merely “Making Things Safe,” Toward an Ethos of Obligation as a “Duty of Care to the Other”

As Caputo has suggested:

Ethics makes safe. It throws a safety net under the judgements we are forced to make, the daily, hourly decisions that make up the texture of our lives. Ethics lays the foundations that force people to be good; it clarifies concepts, secures judgements, provides firm guardrails along the slippery slopes of factical life. It provides principles and criteria and adjudicates hard cases. Ethics is altogether wholesome, constructive work, which is why it enjoys a good name. (1993, 4)

A good name indeed. For to speak against Ethics is perhaps erring too much on the side of the heretic. Leeder suggests similarly (albeit in a very different context to Caputo) that ethics is “soft and warm” (2004, 437). But this Ethics, which Caputo (1993) reminds us is “philosophy,” is also tightly and heavily wrapped in piety and profundity, as I suggested at the outset. And this is why it has difficulty resonating with those closest to the ethical fabric of clinical care. There is little that is pious and profound in the day-to-day world of the clinician (in the sense that mostly only superficial regard is given to the religious and deeply humanitarian consequences of being sick in an acute care hospital; there simply isn’t time or resources to attend to them any other way). Neither would most clinicians think of their work in these terms; the majority of clinicians are pragmatists with much “work” to be done, and the fact that, without doubt, it is profound work would nevertheless figure little in their imaginations. This is, in part, the reason why we need to cast aside Ethics and consider instead something much more humble, rather less obscure, and certainly much more relevant and meaningful to those at the sharp and potentially dangerous point of care.

Ethics as Institution: The Origins of the Problem

As Borry et al. (2005, 50) remind us, the term, the institution, and traditions of “bioethics” received their canonical status only in the 1970s. So significant has the field of bioethics become that over the last 30 years we have seen the establishment and proliferation of international, transnational, and national bioethics bodies, as well as a World Congress on Bioethics (Dodds and Thomson 2006). A global community of ethics scholars and practitioners of various kinds now generate an enormous body of literature. In fact, as one commentator has observed, “it is perhaps not too much of an exaggeration to say that bioethics now constitutes a substantial academic industry” (Komesaroff 1995, 63). Furthermore, bioethics inserts itself in healthcare policy, procedure, and all manner of protocols and regulations common among which are the all too familiar rituals in hospitals around the gaining of informed consent, the preservation of patients’ privacy and confidentiality, discussions about the pros and cons of not-for-resuscitation orders, and similar so-called “ethical dilemmas.” Notably, in clinical practice the terms “ethical” and “dilemma” are all but inseparable, and together they frame much of the debate that is conducted in this domain (Komesaroff 1995, 65). McGrath points to a growing critique of a “philosophy based, predominantly abstract, rationalistic, mode of reasoning in bioethics, known as principlism” (1998, 516). As Hunter notes well, “[n]o sure answer is to be found in even the clearest principles … the particularities of human illness … inevitably resist satisfyingly complete abstraction” (1989, 202). Charon (in Frank 1997, 132) and Komesaroff (1995, 64) suggest that this focus on the abstract and principles in clinical ethics is inherently reductive and instrumental.

Why Principlism? Toward a Critique of Autonomy

Beauchamp and Childress’s (1994) four founding principles of autonomy, nonmalificence, beneficence, and justice prevail in and underpin most of what passes for ethical discussion in the clinical setting (Borry et al. 2005, 59). But the four principles do not necessarily share equal footing when it comes to clinical and ethical decision making as “[w]e live in the time of the triumph of autonomy in bioethics” (Schneider 1998, xi). Wolpe (1998) and Lupton and Williams (2004) affirm this ascendency. More to the point here, though, the former argues that “autonomy” has become the “default” position when the other principles conflict. This is so, he argues, because...

Table of contents

• Cover Page
• Title Page
• Copyright Page
• Contents
• List of Figures
• List of Tables
• Notes on Contributors
• Acknowledgements
• Introduction: Towards a Critical Bioethics
• PART I CLINICAL INTERVENTIONS
• PART II BIOPOLITICAL INTERVENTIONS
• PART III GENDERED INTERVENTIONS
• PART IV CULTURAL INTERVENTIONS
• Index