ObjectiveTo increase knowledge of how doctors perceive futile treatments and scarcity of resources at the end of life. In particular, their perceptions about whether and how resource limitations influence end-of-life decision making. This study builds on previous work that found some doctors include resource limitations in their understanding of the concept of futility.SettingThree tertiary hospitals in metropolitan Brisbane, Australia.DesignQualitative study using in-depth, semistructured, face-to-face interviews. Ninety-six doctors were interviewed in 11 medical specialties. Transcripts of the interviews were analysed using thematic (...) analysis.ResultsDoctors’ perceptions of whether resource limitations were relevant to their practice varied, and doctors were more comfortable with explicit rather than implicit rationing. Several doctors incorporated resource limitations into their definition of futility. For some, availability of resources was one factor of many in assessing futility, secondary to patient considerations, but a few doctors indicated that the concept of futility concealed rationing. Doctors experienced moral distress due to the resource implications of providing futile treatment and the lack of administrative supports for bedside rationing.ConclusionsDoctors’ ability to distinguish between futility and rationing would be enhanced through regulatory support for explicit rationing and strategies to support doctors’ role in rationing at the bedside. Medical policies should address the distinction between resource limitations and futility to promote legitimacy in end-of-life decision making. (shrink)
Over several decades, ethics and law have been applied to medical education and practice in a way that reflects the continuation during the twentieth century of the strong distinction between facts and values. We explain the development of applied ethics and applied medical law and report selected results that reflect this applied model from an empirical project examining doctors’ decisions on withdrawing/withholding treatment from patients who lack decision-making capacity. The model is critiqued, and an alternative “constitutive” model is supported on (...) the basis that medicine, medical law, and medical ethics exemplify the inevitable entanglement of facts and values. The model requires that ethics and law be taught across the medical education curriculum and integrated with the basic and clinical sciences and that they be perceived as an integral component of medical evidence and practice. Law, in particular, would rank as equal in normative authority to the relevant clinical scientific “facts” of the case, with graduating doctors having as strong a basic command of each category as the other. The normalization of legal knowledge as part of the clinician’s evidence base to be utilized in practice may provide adequate consolation for clinicians who may initially resent further perceived incursions on their traditional independence and discretion. (shrink)
The turn to empirical ethics answers two calls. The first is for a richer account of morality than that afforded by bioethical principlism, which is cast as excessively abstract and thin on the facts. The second is for the facts in question to be those of human experience and not some other, unworldly realm. Empirical ethics therefore promises a richer naturalistic ethics, but in fulfilling the second call it often fails to heed the metaethical requirements related to the first. Empirical (...) ethics risks losing the normative edge which necessarily characterizes the ethical, by failing to account for the nature and the logic of moral norms. I sketch a naturalistic theory, teleological expressivism (TE), which negotiates the naturalistic fallacy by providing a more satisfactory means of taking into account facts and research data with ethical implications. The examples of informed consent and the euthanasia debate are used to illustrate the superiority of this approach, and the problems consequent on including the facts in the wrong kind of way. (shrink)
The relationship between evidence-based medicine (EBM) and clinical judgement is the subject of conceptual and practical dispute. For example, EBM and clinical guidelines are seen to increasingly dominate medical decision-making at the expense of other, human elements, and to threaten the art of medicine. Clinical wisdom always remains open to question. We want to know why particular beliefs are held, and the epistemological status of claims based in wisdom or experience. The paper critically appraises a number of claims and distinctions, (...) and attempts to clarify the connections between EBM, clinical experience and judgement, and the objective and evaluative categories of medicine. I conclude that to demystify clinical wisdom is not to devalue it. EBM ought not be conceived as needing to be limited or balanced by clinical wisdom, since if its language is translatable into terms comprehensible and applicable to individuals, it helps constitute clinical wisdom. Failure to appreciate this constitutive relation will help perpetuate medical paternalism and delay the adoption of properly evidence-based practice, which would be both unethical and unwise. (shrink)
The convergence of complementary and alternative medicine (CAM) and evidence-based medicine (EBM) is a prominent feature of healthcare in western countries, but it is currently undertheorised, and its implications have been insufficiently considered. Two models of convergence are described – the totally integrated evidence-based model (TI) and the multicultural-pluralistic model (MP). Both models are being incorporated into general medical practice. Against the background of the reasons for the increasing utilisation of CAM by the public and by general practitioners, TI-convergence is (...) supported and MP-convergence is rejected. MP-convergence is epistemologically and clinically incoherent, and it cannot be regulated. It is also inconsistent with developments in the legal determination of the standard of care for both diagnosis/treatment and disclosure. These claims concerning MP-convergence are justified by the fact that science is not a member of the group of perspectives or world-views which postmodernism treats as equally valid, and this is especially important for healthcare. (shrink)
It is increasingly asserted that the disagreements of abstract principle between adversaries in the euthanasia debate fail to account for the complex, particular and ambiguous experiences of people at the end of their lives. A greater research effort into experiences, meaning, connection, vulnerability and motivation is advocated, during which the euthanasia 'question' should remain open. I argue that this is a normative strategy, which is felicitous to the status quo and further medicalises the end of life, but which masquerades as (...) a value-neutral assertion about needing more knowledge. (shrink)
Shanachie and Norm Content Type Journal Article Category Case Studies Pages 1-2 DOI 10.1007/s11673-012-9356-0 Authors Malcolm Parker, School of Medicine, The University of Queensland, 288 Herston Road, Herston, QLD 4006, Australia Journal Journal of Bioethical Inquiry Online ISSN 1872-4353 Print ISSN 1176-7529.
Stewart and DeMarco’s economic theory of patient decision-making applied to the case of diabetes is flawed by clinical inaccuracies and an unrealistic depiction of patients as rational traders. The theory incorrectly represents patients’ struggles to optimize their management as calculated trade-offs against the costs of care, and gives an unrealistic, inflexible account of such costs. It imputes to physicians the view that their patients’ lack of compliance is unreasonable, but physicians are accustomed to the variety of human factors which contribute (...) to suboptimal compliance, and work with patients to minimize their influence. By depicting patients as rational traders rather than human beings with a range of motivations and burdens, the economic theory distorts the proper function of informed consent. (shrink)
Prenatal Diagnosis includes diagnostic procedures carried out during the antenatal period, together with Preconception Screening of prospective parents, and prenatal genetic diagnosis. The purpose of all these procedures is to provide prospective parents with opportunities to decide whether or not to have a child who will be diseased or disabled. Selection decisions determine what kinds of children are brought into existence; the ability to make these decisions is of huge ethical significance. It raises connected questions about discrimination, the social status (...) of disabled people and the medicalisation of disability; patient vulnerability and the power of the medical and counselling professions to influence decision-making; and the conceptualisation of selection as a public health measure and even as eugenic. In this paper, I outline the ethical issues raised by prenatal diagnosis and describe some of the arguments which have been elaborated in relation to the permissibility of selecting against diseases and disabilities. I conclude that there are no good arguments against the prevention of disability through PD but that providing adequate information for decision-making and facilitating uncoerced individual decisions requires further attention. (shrink)
An Anonymous DeathThe comet, a white haired traveller, hauls its tail behind, thereby hangs its tale. Its particulate history swings away into black time as it skirts you.A million times a million fissions, fires in Andromeda, a surge of ice across a steppe, the moon’s impacted skin. Events escape their birth and move out at the roar of light, hurtling endlessly nowhere and everywhere colliding stray worlds, spinning and groping.At night through cat’s eye domes watchmen on the world’s clearest ranges (...) trap the begetting of suns or discern an ancient death when intercepted at the glass when Diplodocus started the journey into strata or when a hairy thing tottered erect and stretched out tool-seeking fingers. The watchers in the domes live half in a past older than the sun.I tended a white haired man and cry out for a lens to map him. His deeds curve short of my time sputting out in a brown river carrying a wiry oarsman in a sepia photograph. The deeds of friends are buried in a beach wir. (shrink)
The recently published BMA Guidelines on Withholding and Withdrawing Medical Treatment encourage a balance between deriving maximal benefit from medical treatment, and achieving as natural a death as possible in the circumstances. I argue that the concepts of burdensomeness, natural death and medicalised death are of greater fundamental importance than that of intention, and do not help constitute a moral distinction between withdrawal of treatment and active assistance to die. Nor should they continue to ground the corresponding legal distinction. In (...) the situations of both treatment withdrawal and active assistance to die, disease causation, human agency and moral responsibility are related in the same way. In both situations, we can intend that a person die for the right reasons, based on a concern for natural death.However, the law is reluctant to impose positive obligations on people, in contrast to the protection of negative rights. For example, the Northern Territory’s Rights of the Terminally Ill Act provided for assisted death as a lawful exception to an otherwise unlawful act, rather than as an enforceable right like the right to refuse unwanted medical treatment. Nevertheless, that the enforceability of a positive right to assisted death is difficult to conceive, is itself the product of a particular historical/moral/religious frame of reference currently under deconstruction. Genuine natural death statutes would consolidate the important principles supported here, and could apply uniform safeguards to all death-hastening decisions. (shrink)
Lennard Davis’s Biocultural Critique of the alleged certainty of diagnosis (Davis Journal of Bioethical Inquiry 7:227−235, 2010) makes errors of fact concerning psychiatric diagnostic categories, misunderstands the role of power in the therapeutic relationship, and provides an unsubstantiated and vague alternative to the management of psychological distress via a conceptually outdated model of the relationships between physical and psychological disease and illness. This response demonstrates that diagnostic knowledge vouchsafes legitimate power to physicians, and via them relief to patients who suffer (...) from psychological distress. The history of medicine and psychiatry demonstrates that psychiatric diagnosis shares many features with physical diagnosis, while there is also reason to believe that the two types will continue to be distinct in some respects. Diagnostic categories in psychological medicine, like those in physical medicine, are provisional, probabilistic, and often uncertain. These features do not detract from the dependence on diagnosis of therapeutic efficacy in both domains. (shrink)
The Australian Health Ethics Committee’s National Statement on Ethical Conduct in Research Involving Humans expanded the health and medical focus of preceding statements by including all disciplines of research. The Statement purports to promote a uniformly high ethical standard for this expanded range of research, and is endorsed by, inter alia, the Australian Academy of the Humanities, the Australian Academy of Science, and the Academy of Social Sciences in Australia.High ethical standards should apply to all research involving humans. However, uniformity (...) in the review processes of disparate research endeavours is not a necessary condition for uniformly high ethical standards. Bringing the ethical review of all research under a model which has developed within the context of health and medical research ethics for over thirty years may be inappropriate and at times incoherent. The language, methods, nature and products of research in areas such as the Humanities are often very different from those of health, medical and other sciences.The Behavioural and Social Sciences Ethics Review Committee at The University of Queensland had, since the mid-1980s, considered that the guidelines of the time did, in fact, cover all aspects of human experimentation. We describe the ways in which this position was implemented, how issues raised by the new wording in the National Statement have been recently managed by UQ’s research ethics committees, and point to outstanding questions. (shrink)
The United Nations Convention on the Rights of Persons with Disabilities urges and requires changes to how signatories discharge their duties to people with intellectual disabilities, in the direction of their greater recognition as legal persons with expanded decision-making rights. Australian jurisdictions are currently undertaking inquiries and pilot projects that explore how these imperatives should be implemented. One of the important changes advocated is to move from guardianship models to supported or assisted models of decision-making. A driving force behind these (...) developments is a strong allegiance to the social model of disability, in the formulation of the Convention, in inquiries and pilot projects, in implementation and in the related academic literature. Many of these instances suffer from confusing and misleading statements and conceptual misinterpretations of certain elements such as legal capacity, decision-making capacity, and support for decision-making. This paper analyses some of these confusions and their possible negative implications for supported decision-making instruments and those whose interests these instruments would serve, and advises a more incremental development of existing guardianship regimes. This provides a more realistic balance between neglecting the real limits of those with mental disabilities and thereby ignoring their identity and particularity, and continuing to bring them equally and fully into society. (shrink)
In that Case Content Type Journal Article DOI 10.1007/s11673-010-9261-3 Authors Malcolm Parker, School of Medicine, University of Queensland, Brisbane, Australia Journal Journal of Bioethical Inquiry Online ISSN 1872-4353 Print ISSN 1176-7529.
I found a manin a roomsprawl awkwardat a dying angletickingat his bed’s endat his life’s endpast the end of his witsand his wife’sin a roomround the end of their lives.He trembled his vows againheld his cachectic bellepast her life’s endtheir last toast the mercy kill.I found himticking slowlyshe colddeliveredwaiting on his life.His survivalobliging inquiryof motiveof methodI hurriedhim off to hergentlest of homicides.Two mounds in a room, coolingpast fear, post suicide.
Fulford has argued that (1) the medical concepts illness, disease and dysfunction are inescapably evaluative terms, (2) illness is conceptually prior to disease, and (3) a model conforming to (2) has greater explanatory power and practical utility than the conventional value-free medical model. This ‘reverse’ model employs Hare's distinction between description and evaluation, and the sliding relationship between descriptive and evaluative meaning. Fulford's derivative ‘Values Based Medicine’ (VBM) readjusts the imbalance between the predominance of facts over values in medicine. VBM (...) allegedly responds to the increased choices made available by, inter alia, the progress of medical science itself. VBM attributes appropriate status to evaluative meaning, where strong consensus about descriptive meaning is lacking. According to Fulford, quasi-legal bioethics, while it can be retained as a kind of deliberative framework, is outcome-based and pursues ‘the right answer’, while VBM approximates a democratic, process-oriented method for dealing with diverse values, in partnership with necessary contributions from evidence-based medicine (EBM). I support the non-cognitivist underpinnings of VBM, and its emphasis on the importance of values in medicine. But VBM overstates the complexity and diversity of values, misrepresents EBM and VBM as responses to scientific and evaluative complexity, and mistakenly depicts ‘quasi-legal bioethics’ as a space of settled descriptive meaning. Bioethical reasoning can expose strategies that attempt to reduce authentic values to scientific facts, illustrating that VBM provides no advantage over bioethics in delineating the connections between facts and values in medicine. (shrink)
Plural democratic societies encourage and require the tolerance of disparate views. However, in relation to contentious areas like assisted reproductive technologies and destructive embryo research, tolerance is strained by the normative force of our fundamental beliefs about the moral status of early human forms. Yet in the continuing debates, spokespersons for different positions often do not concede all the implications of their arguments, may sidestep the real moral issues, and can fail to be clear about the foundations on which their (...) arguments and policy advice ultimately rely. Guidelines and statutes can be rendered incoherent by the desire to balance and satisfy opposing values, rather than honestly reflecting the primary values they espouse.I call for greater clarity and honesty as these issues continue to be debated. An uncritical adherence to pluralism will encourage strategic obfuscation, but citizens of democracies need to be clearly informed about all the premises of opposing positions. Decisions about ethically and legally acceptable reproductive technologies ultimately depend on support for one metaphysical grounding at the expense of another. This should be acknowledged, as should its implications for policy. (shrink)
The materials consist of a co-authored, peer-reviewed book, a co-authored, peer-reviewed book chapter, 30 single authored peer-reviewed journal papers, and 15 co-authored peer-reviewed journal papers, of which I was the lead author on 8 papers. There are 32 papers from Australasian journals, at least two of which are also regarded as international. 22 papers are published in international journals. The co-authored book was favourably described in his foreword by Justice Michael Kirby of the High Court of Australia. The refereed chapter (...) is contained in an issue of the Australian Legal Monographs series. The papers constitute a body of work in Australasian and international contexts in a field which is relatively new to academic achievement, broadly understood as philosophy of medicine, medical ethics and health law. The journals in which the papers are published include two of the most highly regarded bioethics journals in the world, Australia’s leading medical journal, the two leading world medical education journals, Australia’s leading journal for health and medical law, and the Torts Law Journal, an Australian journal which is recognized as one of the world’s leading journals in the field of tort law. (shrink)
Republication: In That Case Content Type Journal Article DOI 10.1007/s11673-010-9264-0 Authors Malcolm Parker, School of Medicine, University of Queensland, Brisbane, Australia Journal Journal of Bioethical Inquiry Online ISSN 1872-4353 Print ISSN 1176-7529.
SenilityCalled from pleasuresI go tap-tapping down an old man’s backdown the skin of eighty summers wastingon a rib-ladder closingon a history of heart and lungs.These narrowly contracting bags I find, proclaim“Today his chest is clear as yours or mine.”This is the news requiredas the tide of vigilancelaps his sheets each surfacing dawn.“He’s doing very well.”He leans his gaze to the voice dintingthe routine of his roombut slides the focal point towards infinitypast those gatheredto the motes of memoryto wherepinned in the (...) windthrough their age and bondher sacrificial flags go flutteringbattered and fastened into the room’s cornerhinged haggard to his unhinging.In this too a workless son and centrelessclock-bound slaveto the incontinent brain and its seepage.Two tight-wire walkerswell talked out by nine each bed-wet daythe backyard hoist their prayer-wheel creaking.The sheets flap up the scent of their detentions.Time in its time will track them round their modest cornernovice at the f. (shrink)
A crescendo of panting to her stiff-lunged yearspressed in on her for three days and a bit before the succumbingno word could be wedged between gasps.A knife twist in her life’s two year tail two years’witness to others’ ministerings at her flesh-raw chestturned outward to the airenforced fluency in the language of lint.From nests of treason in her breastat night the insurgency pushed outinto the bloodlinesoutriders of a black hostthe dreadful propaganda of cellsbridgeheads locked down in bone and braina Reichstag (...) fire flowering in her backherstory crumblingmidnight dominoes along her spine.At the endat the panting postin the room curtained for deathher body spat and crackled with a foreign fevereven past the last breath and her eyes drying.In the bare room a malignant hum.When they came for her a thin smoke hung. (shrink)
They enterin curves and stoopslimping and tappinga file of bare armscreased faces upliftedred eyelids poutingeyes curtained in cataract.The syringes are magazined at his hip.A pinch of skinin a chill autumn morninga stinging spreads outat the borders of shouldersthe grim supplicationfor all his attentionthe trembling smileon his remembering a name.Swabs spent in bucketsthe names all collecteda shifting and amblingacross the lawns to their liveson small porchesand in dim echoing cells.Washing his handsof the short easy morningthose bird-bone armsgrow stars of Davidin the (...) injected whealsand the upturned headspull at his neckfor a sparklet of mercyhe prodding them downinto the frostfrom the stinking trainsat the point of more serious weaponry.They are a herdfanning out to their winding down daysdark-eyed ones shuffling blindto other deaths, gassed and limed. (shrink)