No full-text available
To read the full-text of this research,
you can request a copy directly from the author.
Bioethics and Disability: Toward a Disability Conscious Bioethics
Abstract
Bioethics and Disability provides tools for understanding the concerns, fears, and biases that have convinced some people with disabilities that the health care setting is a dangerous place and some bioethicists that disability activists have nothing to offer bioethics. It wrestles with the charge that bioethics as a discipline devalues the lives of persons with disabilities, arguing that reconciling the competing concerns of the disability community and the autonomy-based approach of mainstream bioethics is not only possible, but essential for a bioethics committed to facilitating good medical decision making and promoting respect for all persons, regardless of ability. Through in-depth case studies involving newborns, children, and adults with disabilities, Bioethics and Disability proposes a new model for medical decision making that is both sensitive to and sensible about the fact of disability in medical cases. Disability-conscious bioethics will bring together disability experts and bioethicists to identify and mitigate disability bias in our health care systems.
... According to the Helsinki declaration, people with intellectual disabilities have been considered a vulnerable population requiring research protections (General Assembly of the World Medical Association 2014). These protections have sometimes placed limits on the opportunities for self-determination and autonomy of people with intellectual disabilities, preventing them from taking on roles as participants and co-researchers in research projects (Friesen et al. 2023;Ouellette 2011). ...
... It is not yet clear how balancing power regarding ethical considerations in research could impact how inclusive research is implemented. For now, researchers with intellectual disabilities need ethics training that they can understand, access, and possibly interrogate (Wolbring 2003;Milner and Frawley 2019;Ouellette 2011). ...
The development and practice of inclusive research with people with intellectual disabilities is complex, revealing challenges and lessons that inform innovative and novel methodological approaches. In Africa, inclusive research still lags for various reasons. First, due to societal misconceptions that portray people with intellectual disabilities as unable to self-advocate or as lacking agency and self-determination; second, due to a lack of trained researchers and ethics committees on inclusive research practices. This paper critically reflects on and discusses the strategies and methods used to conduct an inclusive research study in Kenya. The focus was on the methodological approach of including people with intellectual disabilities as researchers in Kenya. Two people with intellectual disabilities were trained as research assistants. This paper describes the experiences with Institutional Review Boards, the processes and experiences while training this research assistants using a UK-developed curriculum, and fieldwork experiences while piloting interview guides, conducting interviews, and conducting focus groups with this research assistants. This study findings indicate the need to culturally adapt co-researcher training, the importance of working with support personnel who empower researchers with intellectual disabilities, and the need for greater advocacy to change negative attitudes towards people with intellectual disabilities that hinder their participation in research.
... The relationships between neurodivergent and disabled communities, and healthcare practices are marked by ambivalence. On the one hand, there is a well-documented history of discriminatory and harmful healthcare interventions regarding neurodivergent and disabled people, which will be illustrated below (Chapman & Bovell, n.d.;Ouellette, 2011). On the other hand, healthcare practices also hold beneficial potential and provide necessary services. ...
... Interestingly, a handful of interdisciplinary scholars have started to define the contours of such a disability approach to bioethics, or 'disability bioethics' in short (e.g. Ouellette 2011;Scully 2008;Garland-Thomson 2017;Stramondo 2016). My working definition is the following: disability bioethics are approaches to bioethics conscious of the empirical and theoretical insights offered by disabled (and neurodivergent) ways of living. ...
The relationships between neurodivergent and disabled communities, and healthcare practices are marked by ambivalence. While there is a history of harmful and discriminatory practices, the clinical encounter also holds beneficial and empowering potential for neurodivergent and disabled people. To address this ambivalence, this paper’s central question is whether and how bioethical decision-making in healthcare settings can become more informed by critical insights from neurodiversity and disability studies. The bioethical debate in Western countries on early interventions for young autistic children will be the case animating my theoretical propositions. I provide a working definition of such a ‘disability approach to bioethics’ and review the obstacles in both mainstream bioethics and disability studies this approach has to overcome. Then, the ethical concept of vulnerability, its feminist reinterpretation and its potential for disability bioethics are introduced. Instead of using the concept in its traditional, problematic sense, I propose that vulnerability can be reclaimed, or cripped, by neurodiversity and disability movements to do the exact opposite: to trouble the demarcation between the vulnerable and the invulnerable, to stress structural injustices over individual deficits, and to justify solidaristic, empowering interventions over paternalist ones. Finally, this ‘cripped account of vulnerability’ will be applied to the case of early autism intervention.
... well-documented history of discriminatory and harmful healthcare interventions regarding neurodivergent and disabled people, which will be illustrated below (Chapman & Bovell, n.d.;Ouellette, 2011). On the other hand, healthcare practices also hold beneficial potential and provide necessary services. ...
... Interestingly, a handful of interdisciplinary scholars have started to define the contours of such a disability approach to bioethics, or 'disability bioethics' in short (e.g. Ouellette, 2011;Scully, 2008;Garland-Thomson, 2017;Stramondo, 2016). My working definition is the following: disability bioethics are approaches to bioethics conscious of the empirical and theoretical insights offered by disabled (and neurodivergent) ways of living. ...
The relationships between neurodivergent and disabled communities, and healthcare practices are marked by ambivalence. While there is a history of harmful and discriminatory practices, the clinical encounter also holds beneficial and empowering potential for neurodivergent and disabled people. To address this ambivalence, this paper’s central question is whether and how bioethical decision-making in healthcare settings can become more informed by critical insights from neurodiversity and disability studies. The bioethical debate in Western countries on early interventions for young autistic children will be the case animating my theoretical propositions. I provide a working definition of such a ‘disability approach to bioethics’ and review the obstacles in both mainstream bioethics and disability studies this approach has to overcome. Then, the ethical concept of vulnerability, its feminist reinterpretation and its potential for disability bioethics are introduced. Instead of using the concept in its traditional, problematic sense, I propose that vulnerability can be reclaimed, or cripped, by neurodiversity and disability movements to do the exact opposite: to trouble the demarcation between the vulnerable and the invulnerable, to stress structural injustices over individual deficits, and to justify solidaristic, empowering interventions over paternalist ones. Finally, this ‘cripped account of vulnerability’ will be applied to the case of early autism intervention.
... In the late 1910s, Chicago surgeon Harry J. Haiselden allowed at least six "defective" infants to die, and flagrantly publicized these acts as noble through journalism and film [15]. Similarly, as numerous states in the U.S. implemented eugenic laws and policies throughout the twentieth century, the medical community willfully participated in discriminatory acts of violence such as involuntary sterilization, forced institutionalization, and denial of treatment [14,16]. Notably, these practices targeted women more than men; Black, latinx, and indigenous people of color more than whites; and the poor more than the wealthy [17]. ...
... These attitudes perpetuate healthcare disparities as well as violate the core bioethical principles of autonomy, beneficence, nonmaleficence, and justice [16]. Problematically, PWD lack representation on hospital triage committees and within the larger medical community [34], prompting recent calls for a more disability-inclusive response to the pandemic [6,34]. ...
The COVID-19 era exposes what was already a crisis in the medical profession: structural racism, ageism, sexism, classism, and ableism resulting in healthcare disparities for Persons with Disabilities (PWD). Early research highlights these disparities, but we do not yet know the full impact of this pandemic on PWD. Over the last 20 years, many medical schools have attempted to develop disability competency trainings, but discrimination and inequities remain, resulting in a pervasive distrust of medicine by the disability community at large. In this commentary, we suggest that disability competency is insufficient because the healthcare disparities experienced by PWD are not simply a matter of individual biases, but structural and systemic factors requiring a culture shift in the healthcare professions. Recognizing that disability is a form of diversity that is experienced alongside other systemic disadvantages like social class, race, age, sex, gender identity, and geographic location, we explore the transformative potential of disability conscious medical education, training, and practice that draws on insights from intersectional disability justice activism. Disability conscious medicine is a novel approach, which improves upon competency programs by utilizing disability studies and the principles of disability justice to guide us in the critique of norms, traditions, and institutions to more fully promote the respect, beneficence, and justice that patients deserve.
... Às mulheres com SMRKH é atribuído um caráter assexual ou até mesmo de incompetência, o que parece ser a regra no tratamento dispensado a quem vive com deficiência 24 . Tal situação reforça o estigma, que pode se converter em formas de violência ou de injustiça epistêmica 25 , e, consequentemente, de exclusão social, elevando-se a potência discriminatória contra uma mulher-útero (tema b) e de uma mulher que deve ser corrigida (tema c) para tentar se adequar aos padrões de normalidade. ...
O objetivo do estudo que fundamenta este artigo foi identificar e compreender a construção do estigma social relacionado à síndrome de Mayer-Rokitansky-Kuster-Hauser (SMRKH), uma condição que afeta exclusivamente mulheres. Analisou-se o conteúdo de 43 narrativas jornalísticas veiculadas eletronicamente. O desenho metodológico permitiu a identificação de três temas: (a) o tratamento anedótico da SMRKH; (b) a fragmentação anatomopatológica: mulher-útero ou mulher-vagina; e (c) a retórica do sofrimento da mulher redimido pela medicina. Cerca de 80% do corpus estavam centrados em questões biomédicas, além de haver um flerte com tecnologias experimentais e uma perspectiva de medicina paternalista. Concluiu-se, numa aproximação bioética centrada na dignidade humana, que há necessidade de rever a forma como a mídia apresenta as mulheres afetadas (mulher-útero), evitando ao mesmo tempo modelos de perfeição ou de normalidade que subsumam a mulher ao habitus mulher-esposa-mãe. As mulheres com SMRKH não são corpos ocos e sem úteros, são plenas e podem vivenciar a diferença.
Este estudo examina os princípios bioéticos envolvidos nas técnicas de reprodução assistida, como a fertilização in vitro e a inseminação artificial, com ênfase em conceitos centrais como dignidade humana, autonomia, consentimento informado, justiça e impacto social. Foi conduzida uma revisão narrativa abrangente, sem delimitação temporal, que incluiu uma variedade de fontes, desde estudos empíricos até análises teóricas, enfocando diferentes perspectivas culturais e religiosas. Cartas ao editor, comentários e editoriais foram excluídos da análise. Os resultados identificam barreiras socioeconômicas, culturais e regulatórias que restringem o acesso a essas técnicas, evidenciando desigualdades regionais significativas. O estudo também destaca desafios éticos relacionados à inclusão de pessoas com deficiência, variações culturais na aceitação das práticas e questões associadas à eugenia. A análise reforça a necessidade de políticas de saúde culturalmente sensíveis e de abordagens éticas que norteiem os serviços de reprodução assistida. pela urgência de implementar políticas equitativas e diretrizes éticas inclusivas. Esses achados têm o potencial de influenciar diretamente a prática clínica e a formulação de políticas de saúde, promovendo um acesso mais justo e respeitoso às tecnologias de reprodução assistida.
Robert Veatch’s The Foundations of Justice: Why the Retarded and the Rest of Us Have Claims to Equality (1986) delves into deep questions of justice through the case of a child with disabilities. I describe what is basically right about this vision, as well as what is problematic from the standpoint of contemporary disability bioethics. From there, I dive into the notion of vulnerability that is at play in his work. He describes disability as necessarily a condition of weakness, lesser-than existence, and neediness. When disability is viewed in this way as an inherently vulnerable state of being, the essential sociopolitical dimensions of disability receive inadequate attention, which, in turn, makes it impossible to identify injustices correctly. I connect these points to concrete challenges faced by disability communities during the COVID-19 pandemic, which have raised profound questions about the just use of scarce critical care resources. Any case drawn from the pandemic is a very different kind of case than that of the child in Veatch’s book, but a commonality is the question of who should get what limited resources when needs and urgency vary.
As a field concerned with improving the lives of disabled people, disability studies has always been a normative field of inquiry. For this reason, Vehmas and Watson (2016) urge disability scholars to engage with normativity more explicitly. This article builds on Vehmas and Watson to consider how disability scholars can ‘do’ normativity so as to arrive at normative insights attuned to the lives of disabled people themselves. The article has two aims. The first is to examine how normativity has been ‘done’ in disability studies research up to the present. Here, the article locates three problems that hinder the pursuit of normative insights that have sufficient bearing on disability experiences. The second is to make some suggestions for more reflexively ‘doing’ normativity in disability studies in a way that does yield insights of this kind. For this latter goal, the article draws on ideas from the field of empirical ethics.
• Points of interest
• This article regards disability studies as a field that seeks to improve the lives of disabled people. It is therefore a ‘normative’ field of study.
• The article asks how disability scholars can gain insights to improve disabled people’s lives in a way that responds to the lived experience of disabled people themselves. The article refers to this as ‘doing normativity’.
• The article finds three problems in how disability scholars usually ‘do’ normativity to gain insights of this kind.
• To work on these problems, the article introduces three insights from a field of research known as ‘empirical ethics’.
In this paper, I argue that, even when disability rights activists are most clearly acting as activists, they can advance the scholarly activity of disability bioethics. In particular, I will argue that even engaging in non-violent direct action, including civil disobedience, is an important way in which disability rights activists directly support the efforts of disability bioethics scholars. I will begin by drawing upon Hilde Lindemann’s work on relational narrative identity to describe how certain damaging master narratives about disability hinder the uptake of arguments from disability bioethics. Then, I will argue that disability activism, especially non-violent direct action and civil disobedience, provides an effective counterstory to some of the worst of these master narratives, thereby laying the groundwork for the scholarly argument s of disability bioethicists to be given more serious consideration. Ultimately, I conclude that the field of bioethics is improved when it abandons the gross grained, generalizations about who disabled people are and how they act put forth by oppressive master narratives in favor of the more nuanced self-descriptions offered by the counterstories being offered by disabled people themselves. So it is that, by challenging these oppressive master narratives that constrain and distort the social meaning of disability, disability activism can improve mainstream bioethics.
This paper considers the continuation of involuntary psychiatric hospitalization during
the COVID-19 pandemic, with a focus on the United States of America. Situating psychiatric
diagnosis and hospitalization within the broader context of decades of social and
historical research, as well as emergent fields such as feminist philosophy of disability,
critical diversity studies (CDS), and mad studies, I argue that a socially mediated
process which is legitimated with appeals to “health” and “safety” should not be maintained
during a pandemic of a readily communicable virus that is especially dangerous for
individuals clustered in inpatient settings. A CDS approach allows the clear identification
of “severe mental illness” as a marked category of social difference which leads to
multiple forms of social oppression. In this paper, I show how involuntary psychiatric
hospitalization is a social process through which marked individuals are dehumanized
and confined. Furthermore, I consider why the maintenance of the status quo, even
under pandemic conditions, demonstrates that involuntary treatment is primarily a
political, rather than a medical, process. Finally, I outline why the politics of
involuntary treatment should concern longstanding disciplines such as public health
and bioethics, as well as emergent disciplines like CDS.
The article assesses contemporary bioethical debates about the uses of the cochlear implant, an expensive clinical intervention which can have a transformative effect on the lives of deaf people, particularly in the case of children: if implanted before the critical period of language acquisition, they are likely to be able to acquire speech with clarity and become integrated into mainstream society. In some countries, where a distinctive Deaf culture based on the use of sign language exists, some deaf parents object the implantation of their own deaf children with the justification that deafness is not necessarily a medical condition, but a meaningful minority cultural identity. The article points out that these debates that revolve around individual versus communitarian arguments are rather particularistic in nature, as they have little to no relevance in the developing regions of the world where typically neither a sign language-based deaf identity nor access to the cochlear implant exists.
Key Concepts
• Hearing loss: an impairment in hearing below 90 decibels, whether permanent or fluctuating.
• Deafness: hearing loss above 90 decibels.
• D/deaf culture: according to the convention in the field, audiological deafness is indicated with a lower case d and cultural Deafness with an upper case D.
• Disability-adjusted life year (DALY): a measure of overall disease burden, expressed as the number of years lost due to ill-health, disability or early death. It was developed in the 1990s as a way of comparing the overall health and life expectancy of different countries.
• Genetic engineering: the direct manipulation of an organism's genes using biotechnology.
Since 2007, social epidemiologist Paula Lantz has repeatedly warned about the dangers of medicalizing public and population health (Lantz et al., 2007). Tracking Zola’s classic definition, she defines medicalization as ‘the expansion of medicine as an institution and the use of a medical lens to view human processes and behavior’ (Ibid. at p. 1254). In a 2019 commentary, she noted specifically that medicalizing public and population health problems risk shrinking the denominator, thereby reducing the scope of the communities who are affected by a given health hazard (Lantz, 2019). Medicalization also shifts the framework of the problem itself away from ‘upstream institutional, systemic, and public policy drivers of population health problems and distributional disparities’ (Ibid. at p. 38). Unsurprisingly, processes of medicalization tend also to emphasize downstream, micro-level (biomedical) interventions to health problems experienced by entire communities.
Medicalization is also damaging from the perspective of global public health. As Vicente Navarro trenchantly remarked in 2004, the dominance of a ‘categorical’ (disease-by-disease) approach to global health that has emphasized ‘silver-bullet-type solutions’ has eroded the ‘infrastructure of public health services … that degrade rather than improve countries’ public health situations’ (Navarro, 2004, at p. 5). This framing is of course pushed by wealthy countries in the Global North—most obviously the USA—in which the forces of medicalization and the capital attached to it are deeply entrenched in all manner of social institutions and structures.
Nesse trabalho, buscamos propor uma resposta alinhada com a bioética feminista à questão da esterilização não-voluntária de mulheres com deficiência. Em um primeiro momento, estabelecemos vias de reconciliação dos estudos feministas com os estudos de deficiência, expondo os “dilemas” mais sensíveis nos encontros entre estes, quais sejam os testes pré-natais, os abortos seletivos e as desigualdades do trabalho de cuidado. Em seguida, tratamos da necessária diferenciação entre os direitos sexuais e os direitos reprodutivos, considerando que, a despeito de sua conexão, estiveram ambos sob o domínio das expectativas sociais sobre as questões de reprodução. Em terceiro lugar, tratamos da questão da esterilização no âmbito da autonomia reprodutiva, considerando o previsto no art. 6º da Lei de Planejamento Familiar (LPF). Utilizando metodologia bibliográfica e documental, exploramos o referencial dos estudos de deficiência, da bioética feminista, da bioética da deficiência e dos direitos sexuais e direitos reprodutivos. Concluímos pela utilização da bioética feminista como via de dissolução do nó da esterilização não-voluntária de mulheres com deficiência, dado que a instrumentalização desse referencial elucida as falsas dicotomias entre ambos os movimentos teóricos e trata adequadamente da interseccionalidade que atravessa a temática.
Background
Decision-making in initiating life-sustaining health technology is complex and often conducted at time-critical junctures in clinical care. Many of these decisions have profound, often irreversible, consequences for the child and family, as well as potential benefits for functioning, health and quality of life. Yet little is known about what influences these decisions. A systematic review of reasoning identified the range of reasons clinicians give in the literature when initiating technology dependence in a child, and as a result helps determine the range of influences on these decisions.
Methods
Medline, EMBASE, CINAHL, PsychINFO, Web of Science, ASSIA and Global Health Library databases were searched to identify all reasons given for the initiation of technology dependence in a child. Each reason was coded as a broad and narrow reason type, and whether it supported or rejected technology dependence.
Results
53 relevant papers were retained from 1604 publications, containing 116 broad reason types and 383 narrow reason types. These were grouped into broad thematic categories: clinical factors, quality of life factors, moral imperatives and duty and personal values; and whether they supported, rejected or described the initiation of technology dependence. The majority were conceptual or discussion papers, less than a third were empirical studies. Most discussed neonates and focused on end-of-life care.
Conclusions
There is a lack of empirical studies on this topic, scant knowledge about the experience of older children and their families in particular; and little written on choices made outside ‘end-of-life’ care. This review provides a sound basis for empirical research into the important influences on a child’s potential technology dependence.
With diatoms—globally abundant single cell algae—as both a model and an extreme example of diversity among a single species, Radical Bioethics examines narrow constructions of human diversity as a failure of imagination and a refusal to recognize disability as another instance of difference. Along with other disciplines, bioethics has been slow to consider its biases, inherited from a history of social constructions, against people with disability. Both desire and desiderata offer an alternative to harms committed against people with disability in matters relating to initiatives that foster their inclusion as critical participants in and rightful recipients of the commonweal.
This paper has two goals. The first is to argue that the field of bioethics in general and the literature on ideal vs. nonideal theory in particular has underemphasized a primary problem for normative theorizing: the role of conditioning principles. I define these as principles that implicitly or explicitly ground, limit, or otherwise determine the construction and function of other principles, and, as a result, profoundly impact concept formation, perception, judgment, and action, et al. The second is to demonstrate that ableism is one such conditioning principle and that it undermines the field of bioethics and the practice of biomedicine from achieving the aim of justice as fairness. After briefly addressing the history of principlism in bioethics and its critiques, I lay out and defend my account of conditioning principles. I then argue that ableism is one such principle and demonstrate it at work through an analysis of a storied debate between Eva Kittay, Peter Singer, and Jeff McMahan. In conclusion, I contend that the ethical and philosophical dangers of conditioning principles are too easily exacerbated by ideal theory frameworks, and I do so by demonstrating how they are especially liable to generate epistemic injustice, especially contributory and hermeneutical injustice.
The health threat posed by the novel coronavirus that caused the COVID-19 pandemic has particular implications for people with disabilities, including vulnerability to exposure and complications, and concerns about the role of ableism in access to treatment and medical rationing decisions. Shortages of necessary medical equipment to treat COVID-19 have prompted triage guidelines outlining the ways in which lifesaving equipment, such as mechanical ventilators and intensive care unit beds, may need to be rationed among affected individuals. In this article, we explore the realities of medical rationing, and various approaches to triage and prioritization. We discuss the psychology of ableism, perceptions about quality of life, social determinants of health, and how attitudes toward disability can affect rationing decisions and access to care. In addition to the grassroots advocacy and activism undertaken by the disability community, psychology is rich in its contributions to the role of attitudes, prejudice, and discriminatory behavior on the social fabric of society. We call on psychologists to advocate for social justice in pandemic preparedness, promote disability justice in health care settings, call for transparency and accountability in rationing approaches, and support policy changes for macro- and microallocation strategies to proactively reduce the need for rationing.
Determining whether it is ethical to withdraw life-sustaining treatments (WOLST) from a patient in the minimally conscious state (MCS) recalls recurring debates in bioethics, including the applicability of precedent autonomy and the usefulness of quality-of-life assessments. This article reviews the new clinical understanding of MCS and the complexities involved in detecting covert awareness in patients. Given the diagnostic and prognostic uncertainty surrounding most MCS determinations, we review the ongoing debates concerning precedent autonomy as they apply to making WOLST determinations for patients in MCS. We also consider the moral obligations clinicians might have to understand an MCS patient’s advance directives, current preferences, and quality of life. We argue that an optimal approach for making WOLST determinations requires weighing patients’ previous wishes against their current circumstances but that even here, factual as well as ethical vagaries and disagreements will be relatively commonplace.
The right to make decisions is important for every individual. It allows us to express ourselves, discover our likes and dislikes, and lead our lives in the way we desire. People with cognitive disability have historically been denied this right in many different ways - sometimes informally by family members or carers, and other times formally by a courtroom or other legal authority. This book provides a discussion of the importance of decision-making and the ways in which it is currently denied to people with cognitive disability. It identifies the human right to equal recognition before the law as the key to ensuring the equal right to decision-making of people with cognitive disability. Looking to the future, it also provides a roadmap to achieve such equality.
Bei dem Argument der schiefen Ebene (slipperyslope-argument; Dammbruchargument) handelt es sich um einen im Alltag und in wissenschaftlichen Diskursen weit verbreiteten Argumentationstyp. Ein Argument der schiefen Ebene kommt meist dann zum Tragen, wenn gegen eine Handlung bzw. Praxis unmittelbar keine moralischen Gründe sprechen. Gegen die Handlung wird dann angeführt, dass sie zu einer Ereignisfolge führe, an deren Ende ein von allen Diskutierenden als moralisch unerwünscht angesehener Zustand steht. Typisch ist ein gradualistischer Übergang von einem eher unproblematischen Anfang zu einem prognostizierten schrecklichen Ende, das mit diesem Anfang in Zusammenhang gebracht wird. Wer etwa behauptet, die Abschaffung des Latinums als Studienvoraussetzung sei für sich genommen akzeptabel, führe jedoch mittelfristig zu schlechteren Grammatikkenntnissen und langfristig zur Abschaffung erst sämtlicher Sprachvoraussetzungen und dann jeglicher Bildung, bringt eine typische Variante des Arguments der schiefen Ebene vor.
Disability is a contested concept prevalent in many bioethical discussions. This text presents disability as a phenomenon described within the academic tradition of so-called disability studies. This tradition describes disability mainly as a social phenomenon and distinguishes between impairment – the bodily state of someone’s being – and disability. The latter is largely described as the result of social processes such as discrimination and lack of accessibility. As many bioethicists building different arguments have mobilized cases involving the disabled, but at the same time described disability as a mere medical and pathological state of being, there is a tension between some bioethical discourses and disability studies. This text provides some prominent examples of such discourses.
Barbara Gordon, the most fully realized disabled superhero in the genre, was born able-bodied. She debuted in 1967: she led a secret double life as Batgirl and as the able-bodied librarian daughter of Batman’s ally, Gotham City Police Commissioner James Gordon (Misiroglu 55).2 As part of the “Batman family,” Gordon/Batgirl reflected the evolution in female representation in the genre through the late 1960s and into the 1970s, when she served as a congress-woman and even ran for President (Misiroglu 55).
The deeply entrenched, sometimes heated conflict between the disability movement and the profession of bioethics is well known and well documented. Critiques of prenatal diagnosis and selective abortion are probably the most salient and most sophisticated of disability studies scholars’ engagements with bioethics, but there are many other topics over which disability activists and scholars have encountered the field of bioethics in an adversarial way, including health care rationing, growth‐attenuation interventions, assisted reproduction technology, and physician‐assisted suicide .
The tension between the analyses of the disabilities studies scholars and mainstream bioethics is not merely a conflict between two insular political groups, however; it is, rather, also an encounter between those who have experienced disability and those who have not. This paper explores that idea. I maintain that it is a mistake to think of this conflict as arising just from a difference in ideology or political commitments because it represents a much deeper difference—one rooted in variations in how human beings perceive and reason about moral problems. These are what I will refer to as variations of moral psychology. The lived experiences of disability produce variations in moral psychology that are at the heart of the moral conflict between the disability movement and mainstream bioethics. I will illustrate this point by exploring how the disability movement and mainstream bioethics come into conflict when perceiving and analyzing the moral problem of physician‐assisted suicide via the lens of the principle of respect for autonomy. To reconcile its contemporary and historical conflict with the disability movement, the field of bioethics must engage with and fully consider the two groups’ differences in moral perception and reasoning, not just the explicit moral and political arguments of the disability movement .
Neurodiversity, the advocacy position that autism and related conditions are natural variants of human neurological outcomes that should be neither cured nor normalized, is based on the assertion that autistic people have unique neurological differences. Membership in this community as an autistic person largely results from clinical identification, or biocertification. However, there are many autistic individuals who diagnose themselves. This practice is contentious among autistic communities. Using data gathered from Wrong Planet, an online autism community forum, this article describes the debate about self-diagnosis amongst autistic self-advocates and argues for the acceptance of the practice in light of the difficulties in verifying autism as a ‘natural kind.’ This practice can counteract discriminatory practices towards and within the autistic community and also work to verfiy autistic self-knowledge and self-expertise. This discussion also has important implications for other neurocommunities, neuroethical issues such as identity and privacy, and the emerging field of critical autism studies.
Clinical whole-genome sequencing (WGS) promises to deliver faster diagnoses and lead to better management of care in the NICU. However,several disability rights advocates have expressed concern that clinical use of genetic technologies may reinforce and perpetuate stigmatization of and discrimination against disabled persons in medical and social contexts. There is growing need, then, for clinicians and bioethicists to consider how the clinical use of WGS in the newborn period might exacerbate such harms to persons with disabilities. This article explores ways to extend these concerns to clinical WGS in neonatal care. By considering these perspectives during the early phases of expanded use of WGS in the NICU, this article encourages clinicians and bioethicists to continue to reflect on ways to attend to the concerns of disability rights advocates, foster trust and cooperation between the medical and disability communities, and forestall some of the social harms clinical WGS might cause to persons with disabilities and their families.
The central claim of this paper is that American states' use of so-called "triggering conditions" to regulate surrogate decision-making authority in end-of-life care leaves unresolved a number of important ethical and legal considerations regarding the scope of that authority. The paper frames the issue with a case set in a jurisdiction in which surrogate authority to withdraw life-sustaining treatment is triggered by two specific clinical conditions. The case presents a quandary insofar as the clinical facts do not satisfy the triggering conditions, and yet both the appropriate surrogates and the care team agree that withdrawal of life-sustaining treatment is in the best interest of the patient. The paper surveys applicable law across the 50 states and weighs the arguments for and against the inclusion of such triggering conditions in relevant legal regimes. The paper concludes by assessing the various legal and policy options states have for regulating surrogate decision-making authority in light of the moral considerations (including epistemic difficulties), and notes the possibility for conflict within ethics teams arising from the potential tension between prudence, risk-aversion, and moral obligation.
This Paper explores the interrelationship between U.S. and EU disability discrimination law in terms of founding principles, implementation and practice. It addresses the evolution of a "civil rights" model (broadly based on a social construct of disability) which underpins discrimination law in the United States, and its subsequent adaptation in the EU context to fit with a broader European social model. This Paper also examines the role of the UN Convention on the Rights of Persons with Disabilities in furthering the shift from civil rights approaches to locating disability rights within a broader theory of social justice, and the significance of the EU's conclusion of procedures necessary to ratify the Convention. Finally, it offers some perspectives on the future of a transatlantic dialogue on ensuring that people with disabilities are viewed as rights-holders, supported, and enabled to exercise their rights.
Over the past twenty-five years, a significant number of surrogate decision makers have demanded that a health care provider use medical technology to prolong a patient's life beyond the point thought medically appropriate. These surrogates want to continue life-sustaining medical treatment (LSMT) that providers want to stop. While most of these futility disputes are resolved informally inside the hospital, dozens have now been litigated in U.S. courts. Because the judicial treatment of these disputes casts a long, dark shadow on the informal resolution of all the others, it is important to ascertain exactly what guidance these court cases provide. In assessing the judicial treatment of futility cases, most of the medical, legal, and bioethical literature concludes that courts have generally disfavored providers. But these assessments are based on limited and outdated sets of cases. In this article I offer a comprehensive review of futility cases from 1983 to 2007. Based on this review, I argue that courts have generally neither prohibited nor punished the unilateral refusal of LSMT. Providers have regularly obtained both ex ante permission and ex post forgiveness for stopping LSMT without consent.
Publication of an account of growth attenuation with high-dose estrogen in a child with profound physical and cognitive disability brought widespread attention to a common and complex issue faced by families caring for similarly affected children, namely, the potentially negative effect of the increasing size of a child on the ability of his or her family to provide independent care, which in turn makes it more difficult for parents to keep the child in the home and involved in family activities. In this article we explore the scientific rationale for, effectiveness and safety of, and ethical considerations bearing on growth-attenuation treatment of children with profound and permanent cognitive disability. Informed responses to key clinically relevant questions are proposed. Our analysis suggests that growth attenuation is an innovative and sufficiently safe therapy that offers the possibility of an improved quality of life for nonambulatory children with profound cognitive disability and their families. Pediatricians and other care providers should include discussion of these options as part of anticipatory guidance around the age of 3 years so that, if elected, potential clinically meaningful benefits of growth-attenuation therapy can be realized. Because of the publicity and debate surrounding the first reported case, ethics consultation is recommended.
I distinguish and assess three separate arguments utilized by the opponents of cochlear implants: that treating deafness as a medical condition is inappropriate since it is not a disability; that so treating it sends a message to the Deaf that they are of lesser worth; and that the use of such implants would signal the end of Deaf culture. I give some qualified support to the first and second claim, but find that the principal weight of the argument must be borne by the third argument: that use of the cochlear implants is impermissible because Deaf culture is intrinsically valuable. I show that this claim is, in practice, incompatible with the claim that deafness is not a disability: that the significant disadvantages suffered by the hearing impaired can only be corrected by measures that would end Deaf culture. Since the potential recipients of cochlear implants are, in the main, the prelingually deaf children of hearing parents, the burden of banning the implants would be borne by people who are not members of Deaf culture, and who owe that culture nothing over and above what we all owe cultures in general. I conclude that we cannot ask the parents of these children to sacrifice the interests of their children for the sake of Deaf culture.
Opponents of a right to physician-assisted suicide rely heavily on the results of several empirical studies, particularly data concerning physicians and other health professionals. This commentary on C. J. Gill's article examining the suitability of people with irreversible disabilities to be candidated for assisted suicide (see record 2001-17060-021 ) concludes that values, not empirical data, must ultimately determine the legality of assisted suicide. Studies cannot resolve the fundamental issue.
Applying the Americans with Disabilities Act (ADA) to denials of treatment by assisted reproductive technology (ART) practitioners raises particularly challenging legal and ethical issues. On the one hand, the danger that physicians will inappropriately deny treatment to patients with disabilities is especially worrisome in the context of ARTs, given the widespread stigma associated with reproduction by individuals with disabilities. On the other hand, patients' disabilities may sometimes have potentially devastating implications for any child resulting from treatment, including the possibility that the child will be born with life-threatening or seriously debilitating impairments. Some physicians have strong ethical objections to helping patients become pregnant in the face of such risks. In this Article, Professor Coleman develops a framework for applying the ADA to disability-based denials of ARTs that addresses these competing considerations. In recognizing risks to the future child as a potential defense to a disability discrimination claim, Professor Coleman rejects the view of some commentators that such risks are relevant to reproductive decisions only if the child is likely to suffer so much that he or she would prefer not to exist. Instead, he proposes that, when a patient's disabilities create significant risks to the future child, the question should not be whether the child's life is likely to be so awful that nonexistence would be preferable, but how the risks and benefits of the requested treatment compare to those associated with other available reproductive and parenting options. Professor Coleman provides a theoretical justification for adopting this comparative framework, and examines how ADA precedents developed in other contexts should be applied to decisions about ARTs.
perspective ust as with Terri Schiavo’s case, I have wondered how Ashley’s case came to be framed as a “disability rights” issue. As is now well known, Ashley is a profoundly cognitively and developmentally impaired nine year old whose parents obtained medical and surgical interventions to limit her growth and prevent sexual maturation. Her parents sought (at least in part) to more easily take care of her at home. But the modification of Ashley’s body touched a nerve among those who have fought against the “medical model” of disability. In the medical model, those who cannot attain “speciesnormal” functioning (seeing, hearing, walking, and the like) are considered disabled. Attempts are made to normalize them by surgical repair, rehabilitation, or adaptive aids. In Ashley’s case, the interventions went beyond attempts to “normalize” her, and many disability rights activists found them morally unjustifiable. In contrast, the “social model” of disability locates the problem not with the individual who is impaired, but with the society that oppresses, stigmatizes, and isolates that person. A paralyzed woman may ambulate with a wheelchair; she becomes disabled only when she must rely on others to open a door or help her maneuver over a curb. According to the social model, we should strive to remove attitudinal and structural barriers that prevent all people from participating in society to the best of their abilities, and we should do this in a way that maximizes individual autonomy and dignity. The social model of disability originated from individuals with physical disabilities. Some contend that it is biased against those with intellectual impairments, and this has led to other models such as the “People First” movement, which endorses accommodating the needs of those with physical or intellectual impairments by focusing on their abilities rather than their impairments—seeing them as valued persons first and foremost. Even within this movement, however, disabled persons are assumed to have some level of cognitive capacity. The beliefs posted on the Illinois “People First” Web site reflect this: “We believe every person should go to a regular school,” “We believe that people have a right to speak for themselves and make their own decisions,” and “We believe everyone should have the opportunity to live in the community and to have REAL jobs for REAL pay.” Does the disability rights discourse tend to exclude people with severe neurological impairments? Or is “disabled” perhaps a misnomer in such cases? Advocating for Ashley’s “rights” as a disabled person seems to misread the principle of “respect for persons,” which requires that persons who can make their own decisions should be allowed to do so (within limits), and that those who cannot make their own decisions should be protected from harm. In the latter case, others must make decisions for them based on a best interest standard. That those who are disabled and have decisionmaking capacity feel threatened and frustrated by others’ false assumptions about their rights, worth, and abilities is understandable. But projecting such frustrations onto all impaired persons leads to leaps of logic, as when a pediatrician, quoted in the Salon essay “Behind the Pillow Angel,” declared, “What they did to [Ashley] takes away her personhood. She’s a human being and with that comes all the same rights as you or I have to experience normal development and sexual pleasure.” This comment does not apply to Ashley, who cannot experience normal development or consensual sexual pleasure. In her book Waist-High in the World: A Life among the Nondisabled, Nancy Mairs wrote, “People who act on principle are likely to sacrifice the individual for the agenda, which is frequently shaped by their own, often deeply buried, presuppositions about what constitutes an acceptable life.” Ironically, objecting to “the Ashley treatment” because it sets a dangerous precedent for decisions about less-disabled individuals does just what Mairs, a disability rights advocate, bemoans—it sacrifices Ashley for the disability rights agenda. I think we can do better. The ethics committee deliberating Ashley’s case was right to keep its focus on Ashley. Perhaps one way to consider the downstream effects of such precedent-setting cases is by communicating mindfully with the media. Prompting an informed and...
This article offers clinicians a legal perspective on how to decide which of their patients should receive medical assistance to reproduce. Part I discusses how infertility clinics in the United States and Europe screen their patients with the use of a child welfare standard that encompasses concerns ranging from whether the applicants possess minimal parenting competency to whether it would be in the best interests of the child that the applicants become parents. This Part notes that although there has been extensive scholarly treatment of procreative liberty, discrimination in the provision of medical services, and physicians' prerogative to refuse treatment, clinical gatekeeping on the whole is a topic that the legal academy has neglected. Part II examines doctrines from constitutional law, family law, and trust law in an attempt to locate legal support for clinical screening practices. This Part first locates assisted reproduction along a regulatory continuum ranging from unassisted reproduction on the one extreme to adoption on the other and finds justification, despite the Constitution's solicitude for procreative liberty, for a certain level of governmental oversight of access to infertility treatment. With this justification as a background, Part II challenges the best-interests-of-the-child standard from family law as an appropriate standard for clinical screening, since that standard contemplates an identifiable, living child, not one that has yet to be conceived. The parental-fitness standard may apply however, since infertility clinics may properly express a legal and ethical interest in preventing harm to others by not serving those who possess below a minimal competency to parent. The doctrine of virtual representation from trust law supports this view in its tendency to presume that potential parents will act in the best interests of their prospective children in the absence of strong evidence to the contrary. Part III's recommendations assert that, although the best-interests-of-the-child standard has no place in the clinical screening of applicants for assisted reproduction, clinics should be permitted, if they choose, to perform fitness screening on their applicants.
Gunther and Diekema1 present a unique case report of a child with profound disabilities whose parents requested an active intervention to arrest growth to facilitate caregiving at home. More common is a child with profound disabilities whose annual growth rate is subnormal. In an otherwise healthy child, a workup would include growth hormone (GH) function studies, whereas with this child, the parents and physicians may choose not to test for GH function. In fact, I would argue that it is ethical for the physician to not even suggest a GH workup in this setting. It is not in the child's interest to undergo daily injections to attain larger stature both because of the child's inability to understand the need for the injections and the low likelihood of benefiting from the increased growth. If GH deficiency testing is offered by a physician, one could argue that the parents should refuse the intervention because of the lack of benefit to this child and because the smaller size may facilitate the parents' ability to care for their child.
In 1990, a neonatologist resuscitated a severely premature infant against the wishes of the parents. The child survived with severe disabilities. The parents sued the hospital for battery and negligence. In 2003, the Texas Supreme Court ruled in favor of the physicians and hospitals. According to the ruling, physicians who are faced with split-second, life-or-death decisions do not need parental consent to provide life-sustaining treatment to minors.
Bioethics has a founding story in which medical paternalism, the interference with the autonomy of patients for their own clinical benefit, was an accepted ethical norm in the history of Western medical ethics and was widespread in clinical practice until bioethics changed the ethical norms and practice of medicine. In this paper I show that the founding story of bioethics misreads major texts in the history of Western medical ethics. I also show that a major source for empirical claims about the widespread practice of medical paternalism has been misread. I then show that that bioethics based on its founding story deprofessionalizes medical ethics. The result leaves the sick exposed to the predatory power of medical practitioners and healthcare organizations with only their autonomy-based rights to non-interference, expressed in contracts, to protect them. The sick are stripped of the protection afforded by a professional, fiduciary relationship of physicians to their patients. Bioethics based on its founding story reverts to the older model of a contractual relationship between the sick and medical practitioners not worthy of intellectual or moral trust (because such trust cannot be generated by what I call 'deprofessionalizing bioethics'). On closer examination, bioethics based on its founding story, ironically, eliminates paternalism as a moral category in bioethics, thus causing bioethics to collapse on itself because it denies one of the necessary conditions for medical paternalism. Bioethics based on its founding story should be abandoned.
The case of Ashley X involved a young girl with profound and permanent developmental disability who underwent growth attenuation using high-dose estrogen, a hysterectomy, and surgical removal of her breast buds. Many individuals and groups have been critical of the decisions made by Ashley's parents, physicians, and the hospital ethics committee that supported the decision. While some of the opposition has been grounded in distorted facts and misunderstandings, others have raised important concerns. The purpose of this paper is to provide a brief review of the case and the issues it raised, then address 25 distinct substantive arguments that have been proposed as reasons that Ashley's treatment might be unethical. We conclude that while some important concerns have been raised, the weight of these concerns is not sufficient to consider the interventions used in Ashley's case to be contrary to her best interests, nor are they sufficient to preclude similar use of these interventions in the future for carefully selected patients who might also benefit from them.
In 2004, the parents of six-year-old Ashley, who has profound cognitive disabilities, asked Seattle Children's Hospital to provide three unusual procedures that aimed, not at treating an illness, but at improving the child's and her parents' quality of life. The parents argued that by attenuating Ashley's growth with high-dose estrogen, they would keep her easy to lift and move, and thus readily integrated into their loving family life. By removing Ashley's uterus, they would spare her the distress associated with monthly bleeding that girls with cognitive disabilities can experience especially intensely, as well as remove the possibility of impregnation by a sexual predator. And by removing her breast buds, they would reduce the chances of breast cancer, which runs in the family, and minimize discomfort from the harness needed to lift her in and out of bed.1
The Ashley case prompted heated debate about acceding to parental requests for medical treatment to cope with nonmedical problems. Children like Ashley cannot share in decision making. The parents have to choose, relying on their understanding of what is best for their child and family. To gain a sense of how various their views can be, it helps to listen to competent children with physical disabilities talk about their experiences. The more I have listened to them, the more I have come to grasp the (in retrospect unsurprising) diversity of views they have about using medical means to achieve social purposes. It has made me ever more committed to the boring but fundamental ideal of truly informed decision-making.
Over the years, many of the people I have spoken with have said things much like what therapist and disability rights activist Harilyn Rousso said when she described growing up with multiple physical disabilities:
[My mother] made numerous attempts over the years of my childhood to have me go for physical therapy and to practice walking more "normally" at home. I vehemently refused all her efforts. . . . My disability, with my different walk and talk and my involuntary movements, having been with me all of my life, was part of me, part of my identity. With these disability features, I felt complete and whole. My mother's attempt to change my walk, strange as it may seem, felt like an assault on myself, an incomplete acceptance of all of me, an attempt to make me over.2
Ms. Rousso argued powerfully that her disabling features were part of her identity. She was not going to change her body to reduce anyone else's discomfort.
I am not proud to confess that when I first heard people with disabilities say such things, I practiced some armchair psychoanalysis: "Yes, yes, that's very nice. You say that the problem is social responses to your disability, not your disability. But let's be honest; you're in denial." The more I heard people like Ms. Rousso say that the most difficult thing about having a disability was the way temporarily able-bodied people like me treated them, however, the more I began to take them at their word. I became convinced that if, after a process of truly informed decision-making, someone with a disability refuses the use of medical means to improve her social experience, then there is no good alternative to respecting her decision, no matter how surprising I might find it.
Frankly, however, showing respect in this way didn't turn out to be a stretch. I love the idea of learning to let healthy bodies be. I'm naturally inclined to prefer changing minds with words to changing bodies with scalpels. Using social means like words requires us to engage each other and reminds us that we are the sort of animals whose minds can change with the giving and taking of reasons. As wonderfully efficient as they can be, medical means can emphasize our growing understanding of ourselves as mechanisms to be fixed.
The real challenge was listening to children like an elementary school-age girl I'll call Isabelle, deciding whether to have surgery to make her face look more normal:
I want to [have surgery] because I...
We should not always expect parents to put their children first.
The findings reported in this article are based on a nationwide survey of the attitudes and practices of pediatric surgeons and pediatricians with respect to some of the difficult ethical choices confronting them in medical practice. Four hundred fifty-seven physicians completed a questionnaire in the spring of 1975 in which they reacted to a wide range of issues that have been of increasing concern to the public, as well as to the medical profession. The survey attempts to identify some areas of physician consensus as well as some of the factors, personal and professional, influencing physicians' attitudes. The survey and its statistical analysis are intended to provide current sociological data and are not intended by the authors as an endorsement of any particular point of view or course of action.
In using quality of life as a guide to rationing health services, Oregon laid itself open to charges of bias against the disabled—charges that cannot be dismissed out of hand.
The question of whether or not to give intravenous fluids to cancer patients who are in the last stages of their illness is one that has become problematic to health professionals, particularly those working in terminal-care settings. This article attempts to give a better understanding of the subject by unraveling some of the issues involved. The different types of dehydration and the signs and symptoms that may be experienced by dying patients who are dehydrated are defined. Some of the beneficial effects, as well as the ill effects, that such dehydration may cause are delineated. An analysis is made of health professionals' attitudes to dehydration in dying cancer patients and the special ethical problems associated with the question. There is then a practical synthesis of these facts into the formation of guidelines to facilitate the decision-making process related to the initiation of parenteral fluids in dying patients, and a discussion on the law as it pertains to the treatment of dehydration in such patients.
Since the Quinlan decision in 1976, courts and legislatures have made substantial progress in defining rules to govern nontreatment of dying and debilitated patients. For example, the right of the competent patient to refuse necessary care is now widely established, and the legality of withdrawing respirators and even nutrition and hydration from permanently unconscious patients is increasingly recognized.
More difficult questions arise, however, when the patient is neither competent nor permanently unconscious, but instead is in a conscious, severely demented and debilitated state, with experiences that appear quite limited. Thousands of patients in this condition are cared for in private homes, hospitals, and nursing homes, the victims of stroke, senility, Alzheimer's disease, and other illnesses. Even though they usually require only low-tech, minimally supportive care, such patients can impose great stress on their families and high financial costs on the health care system.
A retrospective review of 399 cardiopulmonary resuscitation (CPR) efforts in 329 veterans was performed to evaluate the observation that few geriatric patients were discharged alive after they underwent CPR. Cardiopulmonary resuscitation efforts with witnessed arrests were more frequently successful than efforts with unwitnessed arrests (47.7% vs 29.9%) and resulted in live discharge more often than efforts with unwitnessed arrests. Cardiopulmonary resuscitation efforts that resulted in a live discharge were more brief and involved a lower mean number of medication doses. Of the 77 CPR efforts in patients 70 years of age or older who had arrests, 24 (31%) were successful, and in 22 (92%), patients were alive after 24 hours. None lived to discharge. There were 322 CPR efforts in the younger cohort; 137 (43%) were successful, in 124 (91%) of these 137 efforts, patients were alive after 24 hours, and in 22 (16%), patients were discharged alive. Older patients were significantly less likely to live to discharge both at the time of arrest and 24 hours after successful resuscitation. When a multivariate analysis was used, the presence of sepsis, cancer, increased age, increased number of medication doses administered, and absence of witness were all "predictive" of poor outcome. Cardiopulmonary resuscitation should be administered only to those who have the greatest potential benefit from this emotionally and physically traumatic procedure.
If something is to be done about doctors' widespread ignorance of the special needs of disabled people then medical school is the logical place to start. It is there that tomorrow's doctors need to develop positive attitudes to disability and begin to understand the medical and social problems of impairment. At present the attention that medical schools pay to the topic varies widely and is generally inadequate.
Medical Education on Disabilities reviews the current state of play.1 Produced by University College London Medical School and the Prince of Wales's Advisory Group on Disabilities, the report lists …
LAST year, when the Bush administration rejected Oregon's plan to ration medical care, it surprised observers with its reliance on the Americans With Disabilities Act (ADA) as the basis for the rejection.1 When limitations in health care coverage have been challenged under other laws protecting the disabled, courts have not been sympathetic. In addition, in concluding that quality of life and functional status should not be taken into account at all in making rationing decisions,2 the Bush administration called into question any serious attempts to ration health care (Am Med News. November 9, 1992:1).
Nevertheless, there were problems with the Oregon plan. For example, there was unfair discrimination in Oregon's decision to deny liver transplants to rehabilitated patients with alcoholic liver disease but not to patients with other causes of liver failure.3 Oregon modified its plan in response to the rejection and in response to further objections
Cancer patients in the terminal phase of their disease often experience fluid deficits. This is mainly due to their inability to ingest adequate amounts of oral fluids to meet the body's physiological demands. In order to correct this deficit, intravenous (i.v.) fluid programs are often instituted. This pilot study was conducted on a group of terminal patients hospitalized in an oncology unit who died while receiving i.v. fluids. It sought to assess the effects of these fluids on their level of thirst. Data were collected on 30 patients in the last 24 hours of life. However, of the 30 patients only 19 were sufficiently alert to be able to verbally evaluate their thirst intensity. Of the 19 patients, six experienced mild thirst, eight moderate thirst, and four severe thirst. This was in spite of IAV hydration regimens which ranged from 500 mL to 3000 mL. Little relationships was found between level of thirst and the amount of i.v. fluids received, blood urea nitrogen (BUN), or sodium blood levels. In addition, although 70% of the patients had fluid retention signs, there was little correlation between these signs and the amount of fluids received. Since the pilot study's sample was small, definitive conclusions could not be drawn. However, our results highlight the need for future research in this area.
In theory, cochlear implants hold out the possibility of enabling profoundly prelingually deaf children to hear. For these children's parents, who are usually hearing, this possibility is a great relief. Yet the decision to have this prosthetic device implanted ought not to be viewed as an easy or obvious one. Implant efficacy is modest and the burdens associated with them can be great. Moreover, the decision to forgo cochlear implantation for one's child, far from condemning her to a world of meaningless silence, opens the child up to membership in the Deaf community, which has a rich history, language, and value system of its own.
This article has no abstract; the first 100 words appear below.
The Supreme Court has unanimously ruled that there is no constitutional right to physician-assisted suicide.¹,² Unexpectedly, however, the Court did much more than simply uphold the New York and Washington statutes prohibiting assisted suicide. A Court majority effectively required all states to ensure that their laws do not obstruct the provision of adequate palliative care, especially for the alleviation of pain and other physical symptoms of people facing death. The plaintiffs in these cases demanded a “right to die” with physician assistance, not a right to adequate palliative care. The defendant states — Washington and New York — countered . . .
Robert A. Burt, J.D.
Yale Law School, New Haven, CT 06520
Recent interpretations of laws prohibiting discrimination against persons with disabilities indicate that these laws will play a greater role in health care decision making than previously anticipated. This article employs lessons from other areas of antidiscrimination law to examine these developments and to provide a framework for making health care decisions that are consistent with these new legal interpretations. This article addresses decisions in individual cases, treatment policies adopted by health care providers, and coverage programs of third-party payers, both public and private.
KIE
The author examines current practices and attitudes of Australian neonatologists regarding the treatment of low birth weight infants. One intensive care unit adheres to criteria of treatment based on weight and its perceived connection with prognosis even when there are available beds and equipment. Another unit treats infants of much lower weight with poorer prognoses. A survey of Australian neonatologists revealed that although most knew of varying practices, over half were opposed to disclosing this knowledge to parents. The physicians were also queried on allocation of resources among infants of varying weights in the units, and on prevention of prematurity. Singer discusses the QALY (quality adjusted life year) and its application in comparing the benefits of resource allocation to neonatal intensive care and to adult care.
The case discussed in this Essay is presently making its way through the Pennsylvania courts. It involves Daniel Joseph Fiori, a man who has been unconscious since the mid-1970s. At stake are decisions concerning life-sustaining procedures. As the case has unfolded, Mr. Fiori's other, his caregivers, judges, and public officials have been struggling over the relative merits of different views, and over whose view shall finally prevail. Both the procedural and substantive aspects of this case offer a disturbing, personal, and very tangible illustration of several of the issues examined in this symposium.
This article examines the role a physician's values and judgment plays in the jurisprudence of medical decision-making. Essentially, the article attempts to answer the question: "If a patient demands treatment that the physician believes will be of no medical benefit to the patient, does the physician have a duty to provide such treatment" This question is of increasing concern to all who participate in our health care system, given society's concerns about escalating health care costs and increased attention on allocation of resources. The article surveys the common law as well as selected statutes that address the rights of a physician to decline to follow a patient's orders based on an objection of conscience. This survey reveals that our current system is unable and at times unwilling to accommodate the physician's beliefs about the proper course of treatment, a phenomenon that greatly endangers the patient/physician relationship. As a remedy, this article proposes that health care facilities set up treatment evaluation boards which would serve to mediate and resolve conflicts between doctors and patients who clash at the bedside.
Because I reject the notion that physical characteristics constitute
cultural membership, I argue that, even if the claim were persuasive
that deafness is a culture rather than a disability, there is no reason
to fault hearing parents who choose cochlear implants for their deaf
children.
This paper examines ethical issues related to medical practices with children and adults who are members of a linguistic and cultural minority known as the DEAF-WORLD. Members of that culture characteristically have hearing parents and are treated by hearing professionals whose values, particularly concerning language, speech, and hearing, are typically quite different from their own. That disparity has long fueled a debate on several ethical issues, most recently the merits of cochlear implant surgery for DEAF children. We explore whether that surgery would be ethical if implants could deliver close to normal hearing for most implanted children, thereby diminishing the ranks of the DEAF-WORLD. The ethical implications of eugenic practices with the DEAF are explored, as are ethical quandaries in parental surrogacy for DEAF children, and their parallels in transracial adoption.
Evidence of physician attitudes favoring the withholding of needed medical treatment from infants infected with HIV compels a reassessment of the applicability and adequacy of existing law in dealing with selective nontreatment. Although we can hope to have learned some lessons from the Baby Doe controversy of the mid-1980s, whether the legislation emerging from that controversy, the Child Abuse Amendments of 1984, has ever adequately dealt with the problem of nontreatment remains far from clear. Today, the medical and social characteristics of most infants infected with HIV introduce new variables into our assessment of that legislation. At stake are the lives of infants who, for reasons of class, race, and HIV infection, are both particularly vulnerable to having their lives devalued and relatively likely to have decisions regarding their medical treatment made by someone other than their parents. These factors, when combined with the prognostic uncertainty characteristic of perinatally transmitted HIV infection, are likely to diminish further the Child Abuse Amendments’ ability to assure an effective response to nontreatment of these infants.The Americans with Disabilities Act, by contrast, offers great promise as an adequate legal response to nontreatment based on HIV infection. Although the ADA’s applicability to individual medical treatment decisions is unclear from the statute’s face and legislative history, normative considerations amply justify interpreting the ADA as covering such decisions. Applying the ADA to treatment decisions pursuant to the medical effects approach proposed by this Article respects the legitimate complexity of the medical decision-making process, but prohibits the interjection of illegitimate considerations of disability into that process. Use of the medical effects approach would not create new burdens, unanticipated by Congress, for medical decision-makers; rather, the approach simply would harmonize legal protection with existing ethical standards. Although using the medical effects approach to judge the legitimacy of treatment decisions for infants infected with HIV doesn’t promise easy answers in hard cases, it does offer a sensitive way of ensuring that the ADA’s revolution reaches infants infected with HIV and all patients with disabilities.
The American Journal of Bioethics 1.3 (2001) 55-56
Mark Kuczewski (2001) rightly calls on bioethicists to become more familiar with the perspectives of people with disabilities and to enter into dialogue with them. But we should reject the view that "the field of bioethics must itself develop a conscience and dedicate itself to advocacy for those who have no money or power to offer this new profession." Bioethics, as a field or discipline, should not dedicate itself to advocacy for anyone. Its only commitment, as a field, is to pursue knowledge and understanding with integrity and respect for the views of other scholars in the field. It should serve neither those with money and power nor those without it—or rather, it serves all of us best by preserving its independence and freedom of opinion, encouraging open debate and the free exchange of ideas.
Individual bioethicists who come across something that they regard as wrong may choose to dedicate themselves to advocacy for the cause of those who they see as wronged, but if they become mere partisans, dismissing without adequate consideration the views of others who are not advocates for the same group, they risk becoming propagandists rather than scholars. The difference between propaganda and scholarly argument lies in the readiness to consider and perhaps even be moved by good arguments that count against a position one has previously held. For the entire field to take up an advocacy stance would imply that bioethicists who do not share the party line should be excluded or dismissed from the field. I can't really imagine that Kuczewski wants that.
In any case, as Kuczewski reminds us toward the end of his article, there is no such thing as "advocacy for those who have no money or power," because this is not a single group with a single set of views about what ought to be done. "People with disabilities" is not a single body of people with one point of view, but a disparate group, among which we find a variety of views. Consider, for example, the deep divisions within the deaf community between those who support cochlear ear implants, which enable some of their children to integrate more easily into the community of hearing people, and those who describe such implants as "genocide" because they threaten the viability of deaf culture. There has been a similar discussion among people with achondroplasia, or dwarfism, about prenatal genetic testing for this condition. Many, but not all, people with genetically-based disabilities are keen to use prenatal testing to avoid having children with those disabilities. Some in the disability community believe that they have been indoctrinated by the prevailing bias against disability, but it is patronizing to assume that people who seek to avoid having children with a disability that they themselves have inherited are unable to think critically about prevailing social conceptions. We should listen to these people, as well as to the vocal disability organizations that deny that life with a disability is in any way less desirable than life without a disability.
There are real issues here that bioethicists need to explore together with the full range of people who are affected by disability. It is not simply a matter of being an advocate for people with disabilities or of opposing wrongful discrimination against people with disabilities. The existence of disability, and our ability to prevent, overcome, or ameliorate it, leads to such fundamental questions as whether responsible parents have the right to deny their child a treatment that makes it possible for the child to understand what people are saying. If parents were deliberately to deafen their child, we would most likely see this as a form of child abuse. Is the deliberate refusal of medical technology that enhances hearing so different? If so, why? In this situation, who are the ones without money and power? The disabled parents, who fear that their children will not be part of the community in which they live? Or the children themselves? Asking that question leads to another fundamental issue: what makes one kind of life better than another? Is it, other things being equal, better to hear than...
Although deeply committed to the model of nondirective counseling, most genetic counselors enter the profession with certain assumptions about health and disability—for example, that it is preferable to be a hearing person than a deaf person. Thus, most genetic counselors are deeply troubled when parents with certain disabilities ask for assistance in having a child who shares their disability. This ethical challenge benefits little from viewing it as a conflict between beneficence and autonomy. The challenge is better recast as a conflict between parental autonomy and the child's future autonomy.
To explore assisted reproductive technology (ART) programs' beliefs about and practices for screening program candidates for the use of ART services.
An anonymous, self-administered, mailed questionnaire.
U.S. ART programs.
Directors of U.S. ART programs.
Screening practices and beliefs, agreement with statements about screening rights and responsibility, information collected about candidates, and likelihood of turning away hypothetical candidates.
The majority of programs do not have a formal policy for screening candidates. The majority of program directors agree that they have a right and responsibility to screen candidates. On average, programs turn away 4% of candidates each year. The majority of programs report being very to extremely likely to deny treatment to the couples described in various scenarios, such as physical abuse, positive HIV status, and single parenthood. Significant variation was seen across programs in their likelihood of turning away various hypothetical candidates.
There is substantial variation in ART programs' screening practices. These results highlight the need for increased debate over what constitutes inappropriate denial of access to services, and what are prudent, social, ethical, and medical judgments.
24 HASTINGS CENTER REPORT May-June 2005 And why beholdest thou the mote that is in thy brother’s eye, but considerest not the beam that is in thine own eye? . . . Thou hypocrite, first cast out the beam out of thine own eye; and then shalt thou see clearly to cast out the mote out of thy brother’s eye. —MATTHEW 7:3-5 The law of bioethics has been the law of cases. Inter-preting the common law and the Constitution,judges have written the law of informed consent, abortion, and assisted suicide. Reacting to causes célèbres, legislatures have written the law of advance directives and end of life decisions. The long, sad death of Terri Schiavo eclipsed even the long, sad deaths of Karen Ann Quinlan and Nancy Beth Cruzan in the duration and strength of the attention and passions it evoked. What are Schiavo’s lessons? Hard cases, lawyers say, make bad law. Why? First, hard cases are atypical cases. They present abnormal situations that normal rules do not anticipate and cannot handle. Schiavo is egregiously atypical. Persistent vegetative states are unusual. Few families fight so implacably and repellently. Courts— and even less legislatures, governors, and presidents—rarely encounter cases about withdrawing treatments. Decisions usually take days, not decades. Second, hard cases make bad law because hard cases force tragic choices—choices where walking toward one blessing means walking away from another. The interests of the Schiavos and the Schindlers were irreconcilable. Ms. Schiavo’s interests in living and dying clashed. The menace of hard cases is that they invite response. But no rule can resolve tragic conflicts well. Even could such a rule be imagined, the law that can manage the hard case mishandles ordinary ones. Thus the best response to hard cases is usually no response. No system of rules ever produces uniformly good results; the goal of legislation is therefore to devise the system that yields the fewest bad results. The course of wisdom is to learn when bad results must be tolerated. But who thinks Schiavo a hard case? It has primarily provoked righteous vindication: Had you but listened to me, all would be well. The conventional bioethical and medical wisdom is that the internecine strife that ignited Schiavo would have been extinguished had Ms. Schiavo done her duty and prepared an advance directive. This is a triumph of faith over reason: First, as Rebecca Dresser has noted, a court long ago granted Mr. Schiavo the authority to act for his wife. Second, early on a court found “clear and convincing evidence” that Ms. Schiavo would have wanted to forego food and water in her circumstances. Both rulings did what advance directives would presumably have done, but neither ended her travail. But suppose Ms. Schiavo had—despite her youth—written a living will. Suppose—heroically—that it accurately and lucidly described a careful decision to refuse food and water in a persistent vegetative state. The Schindlers would still have presented medical evidence that Ms. Schiavo was not in that condition. For that matter, bitter and obdurate litigants don’t need a good case to protract litigation endlessly. Indeed, as Ms. Schiavo’s guardian ad litem notes in this issue, the Schindlers “stated that even if Theresa had executed a formal, written living will, they would have fought to have it voided because they did not believe it was consistent with their and her beliefs.” And they would have had a point. Living wills call for greater powers to predict circumstances and preferences than most of us can muster. Ms. Schiavo would not only have had to imagine the unimaginable about her physical circumstances, she would also have had to anticipate the ways her social circumstances would affect her medical choices. For instance, had Ms. Schiavo anticipated her parents’ inconsolable distress at her death, would she have been willing to perdure? Far from demonstrating the merit of living wills, Schiavo demonstrates their danger. We are insistently admonished that our wishes will be followed if we make living wills. How? Often, just by signing a form from the internet. But many of us cannot actually read those forms. Few of us understand what...