Medical decision-making on behalf of intellectually and developmentally disabled (IDD) patients amounts to a critical challenge, one which has been widely discussed by bioethicists, medical, and le...

It has been argued by disability advocates that supported decision-making must replace surrogate, or substituted, decision-making for people with cognitive disabilities. From a moral perspective surrogate decision-making it is said to be an indefensible form of paternalism. At the heart of this argument against surrogate decision-making is the belief that such paternalistic action expresses something fundamentally disrespectful about those upon whom it is imposed: that they are inferior, deficient or child-like in some way. Contrary to this widespread belief, I will (...) argue that surrogate decision-making sometimes expresses more respect for people with life-long, ‘severe’ or ‘profound’ cognitive disabilities than does the adoption of supported decision-making.. Specifically, I argue that in some cases supported decision-making can arguably express that people with severe or profound cognitive disabilities lack equal moral value. I also argue that supported decision-making for people with profound cognitive disabilities can arguably express that they lack complex and rich inner lives. If our aim is to ensure our behaviour and practices express respect for people with life-long ‘severe’ or ‘profound’ cognitive disabilities, then sometimes surrogate rather than supportive decision-making will be a better option. (shrink)

This paper critically examines whether patients with severe brain injury, who can only communicate through assistive neuroimaging technologies, may permissibly participate in medical decisions. We examine this issue in the context of a unique case study from the Brain and Mind Institute at the University of Western Ontario. First, we describe how the standard approach to medical decision making might problematically exclude patients with communication impairments secondary to severe brain injury. Second, we present a modified approach to medical decision making. (...) We argue that this approach might warrant the inclusion of some patients with severe brain injury in low-stakes decisions, or to express preferences. Third, we present a model of supported decision making to address recalcitrant uncertainty. We conclude by suggesting that the modified approach to decision making and supported decision making might allow a patient with severe brain injury to participate in some medical decisions. Our analysis is provisional and has not yet been implemented in practice. Our discussion is intended to generate further debate on approaches to enhancing autonomy in patients with profound motor and cognitive impairments. (shrink)

Recently, bioethicists and the UNCRPD have advocated for supported medical decision-making on behalf of patients with intellectual disabilities. But what does supported decision-making really entail? One compelling framework is Anita Silvers and Leslie Francis’ mental prosthesis account, which envisions supported decision-making as a process in which trustees act as mere appendages for the patient’s will; the trustee provides the cognitive tools the patient requires to realize her conception of her own good. We argue that supported decision-making would be better understood (...) as a collaborative process, giving patients with intellectual disabilities the opportunity to make decisions in a respectful relationship with trusted others. We offer an alternative account of supported decision-making where the primary constraint is to protect the patient from domination by the trustee. This is advantageous in its preservation of the prospects for genuine collaboration, for the mental prosthesis approach ultimately reinforces a problematic ideal of isolated patient self-determination. (shrink)

This article argues that supported decision making is ideal for people with dynamic cognitive and functional impairments that place them at the margins of autonomy. First, we argue that guardianship and similar surrogate decision-making frameworks may be inappropriate for people with dynamic impairments. Second, we provide a conceptual foundation for supported decision making for individuals with dynamic impairments, which integrates the social model of disability with relational accounts of autonomy. Third, we propose a three-step model that specifies the necessary conditions (...) of supported decision making: identifying domains for support; identifying kinds of supports; and reaching a mutually acceptable and formal agreement. Finally, we identify a series of challenges for supported decision making, provide preliminary responses, and highlight avenues for future bioethics research. (shrink)

Decision-Making Capacity First published Tue Jan 15, 2008; substantive revision Fri Aug 14, 2020 In many Western jurisdictions the law presumes that adult persons, and sometimes children that meet certain criteria, are capable of making their own medical decisions; for example, consenting to a particular medical treatment, or consenting to participate in a research trial. But what exactly does it mean to say that a subject has or lacks the requisite capacity to decide? This question has to do with what (...) is commonly called “decisional capacity”, a central concept in health care law and ethics, and increasingly an independent topic of philosophical inquiry. -/- Decisional capacity can be defined as the ability of subjects to make their own medical decisions. Somewhat similar questions of capacity arise in other contexts, such as capacity to stand trial in a court of law and the ability to make decisions that relate to personal care and finances. However, the history behind the more general legal notions of capacity to stand trial and capacity to manage one’s life is different and operates somewhat differently in law (Roth, Meisel, & Litz 1977; Zapf & Roesch 2005). For the purposes of this discussion the notion of decisional capacity will be limited to medical contexts only; most notably, those where decisions to consent or to refuse treatment or participation in clinical research are concerned. (shrink)

The article introduces readers to the study of disability, both with respect to the interdisciplinary field of disability studies and the field of philosophy of disability. We then offer an overview of three central areas of philosophical inquiry where feminist work in philosophy and disability has made significant contributions: (1) metaphysics and ontology, (2) epistemology and phenomenology, and (3) ethical, social, and political philosophy.

Simple acts of kindness that are performed sincerely and with evident good will can also, paradoxically, be perceived as deeply insulting by the people we succeed in benefiting. When we are moved to help someone out of genuine concern for her, when we have no intention to humiliate or embarrass her and when we succeed at benefiting her, how can our generosity be disparaging or demeaning to her? Yet, when the tables are turned, we sometimes find ourselves brusquely refusing assistance (...) from others or accepting it only grudgingly while trying to show that we do not need their charity. People with disabilities often find ourselves in situations of this sort, where we bristle at others who rush to open doors for us, for instance, while our kindhearted benefactors are surprised and hurt by the cold reception they receive for their efforts. My aim is to explain some of the ways in which well-intentioned and effective beneficence can be offensive, with special emphasis on cases in which someone provides assistance to a disabled person. (shrink)

Most theories of parenthood assume, at least implicitly, that a child will grow up to be an independent, autonomous adult. However, some children with cognitive limitations or psychiatric illness are unable to do so. For this reason, these accounts do not accommodate the circumstances and responsibilities of parents of such adult children. Our article attempts to correct this deficiency. In particular, we describe some of the common characteristics and experiences of this population of parents and children, examine the unique aspects (...) of their relationships, review several philosophical accounts of parental obligations, consider how these accounts might be extrapolated to semiautonomous adult children, and provide suggestions about parental obligations to promote autonomy and independence in adult children with cognitive limitations or psychiatric illness. In extending accounts of parental responsibilities to the case of semiautonomous adults, we find that the parental role includes the duty to continue to provide care—indefinitely if necessary—while cultivating autonomy and independence. (shrink)

In this paper I argue from a number of positions that are, while not uncontested, at least common among analytic philosophers of religion for the possibility, and indeed the plausibility, of a doctrine of limbo. The account of limbo that I advocate is substantially different than the element of Catholic speculative theology that goes by the same name. According to that doctrine, the limbus infantium is a place or state of perfect natural happiness for those who, prior to the age (...) of reason, die without baptism. Given the possibility of ‘baptism by desire’, the need for limbo, as I shall develop it, is not based on whether or not an agent has received the sacrament of baptism. Instead limbo is, I argue, a place where individuals who have not had sufficient opportunity to be reconciled to God in the present life will be given the opportunity to do so in the next life. Limbo, so understood, is a place which allows for the post-mortem healing and growth of individuals so that they are able to choose either for or against God in the way required for redemption in this life. On this view, limbo is not a place of ‘second-chances’, but rather a place of first-chances for those who were denied them in their terrestrial life. (shrink)

Unlike his theory of justice as fairness, John Rawls’s political liberalism has generally been spared from critiques regarding what is due to the disabled. This paper demonstrates that, due to the account of the basic ideas of society and persons provided by Rawls, political liberalism requires that the interests of numerous individuals with disabilities should be put aside when the most fundamental issues of justice are settled. The aim is to accommodate within public reason the due concern for the disabled (...) while upholding political liberalism. To achieve this aim, a revision of the basic ideas of persons and society is proposed. The idea of persons should be regarded as more fundamental than that of social cooperation, and persons should be defined in terms of minimal moral powers. (shrink)

In many Western jurisdictions, the law presumes that adult persons, and sometimes children that meet certain criteria, are capable of making their own health care decisions; for example, consenting to a particular medical treatment, or consenting to participate in a research trial. But what exactly does it mean to say that a subject has or lacks the requisite capacity to decide? This last question has to do with what is commonly called “decisional capacity,” a central concept in health care law (...) and ethics, and increasingly an independent topic of philosophical inquiry. (shrink)

Agency is talked about by many as something that people living with dementia lose, once they've lost much else—autonomy, identity, and privacy, among other things. While the language of loss may capture some of what transpires in dementia, it can obscure how people living with dementia and their loved ones share agency through sharing capacities for memory, language, and decision‐making. We suggest that one consequence of adopting a framework of loss is that it makes the default response to changes in (...) agency the substitution of a family member's agency for the purported lost agency of someone living with dementia. We argue for an alternative framework in which sharing agency is recognized as a central feature of living with dementia. Building on the work of relational theorists, we argue for the value of thinking about agency in dementia as fundamentally shared, and explore potential implications for treatment, caregiver support, and building dementia‐friendly environments. (shrink)

McCarthy and Howard (2023) develop an ethical case for supported decision-making in medical contexts, mainly building upon the republican ideal of non-domination. Their theoretical inquiry is of mu...

Pickering et al. argue that judgments of competence should in part be based on the harm that could result from the decision. The centerpiece of their reasoning is that it is inconsistent...

In this paper, I argue that, contrary to what some critics suggest, political liberalism is not exclusionary with regards to the rights and interests of individuals with cognitive disabilities. I begin by defending four publicly justifiable reasons that are collectively sufficient for the inclusion of members of this group. Briefly, these are the epistemic uncertainty that inevitably exists about individuals’ actual capacities, the political liberal duty to treat parents fairly, the social framework that is required for the fulfilment of parental (...) duties, and the necessity of cultivating certain emotions that are strongly associated with reasonableness. These reasons show why a more inclusive reading of political liberalism is plausible, and how this can be achieved without abandoning or revising the theory’s commitment to public reason, the political conception of the person, and the role of social cooperation. I then turn to the question of what a more inclusive political liberalism would look like. More specifically, I argue that, although it would not require the participation of individuals with cognitive disabilities in the practice of legitimation, it would require their full inclusion in the realm of justice as equal rights-bearers. (shrink)

Health care insurance schemes, whether private or public, are notoriously unaccommodating to individuals with disabilities. While most nonelderly nondisabled persons in the U.S. are insured through private sources, coverage sources for nonelderly persons with disabilities have traditionally been a mix of private and public coverage. For all age groups, the employment-to-population ratio is much lower for persons with a disability than for those with no disability. Moreover, employed persons with a disability were more likely to be self-employed than those with (...) no disability. As a group, therefore, nonelderly people with disabilities have not been as well positioned as others to obtain private health care insurance because in the U.S., acquiring such coverage usually is employer based. (shrink)

Novel neurotechnologies, like deep brain stimulation and brain‐computer interface, offer great hope for treating, curing, and preventing disease, but raise important questions about effects these devices may have on human identity, authenticity, and autonomy. After briefly assessing recent narrative work in these areas, we show that agency is a phenomenon key to all three goods and highlight the ways in which neural devices can help to draw attention to the relational nature of our agency. Drawing on insights from disability theory, (...) we argue that neural devices provide a kind of agential assistance, similar to that provided by caregivers, family, and others. As such, users and devices participate in a kind of co‐agency. We conclude by suggesting the need for developing relational agency‐competencies—skills for reflecting on the influence of devices on agency, for adapting to novel circumstances ushered in by devices, and for incorporating the feedback of loved ones and others about device effects on agency. (shrink)

Historically, philosophers have had little to say about justice and disability. However, in recent years and in response to disability rights movements, philosophers have started to consider the claims to justice of persons with mental and physical impairments. Importantly, some have charged that without extensive revision, social contract accounts of justice – which enjoy immense popularity among political philosophers – cannot address the needs and interests of persons with disabilities. In this article, I explain why social contract accounts are thought (...) to flounder when it comes to justice for persons with disabilities. Then I assess the merits of recent attempts to construct theories of justice inclusive of persons with disabilities. In particular, I consider Nussbaum’s capabilities approach, Kittay’s justice as caring, and various restatements of the social contract. (shrink)

The mental prosthesis model (Silvers and Francis 2009) suggests that interpersonal “prosthetic” thinking could support decision making for people with limited cognitive capacities, and positions th...

This essay explores various roles that philosophers occupy in relation to intellectual disability. In examining how philosophers define their object of inquiry as experts and gatekeepers, it raises critical questions concerning the nature of philosophical discourse about intellectual disability. It then goes on to consider three alternate positions, the advocate or friend, the animal, and the “intellectually disabled,” each of which points to new ways of philosophizing in the face of intellectual disability.

In this article, I present an argument that suggests neuroscience should inform judgments of decision-making capacity. First, I review key behavioral and neurocognitive data to demonstrate that neuroscientific tests might be predictive of decision-making capacity, and that these tests might inform clinical judgments of capacity. Second, I argue that, consistent with the principles of autonomy and justice, such data should inform judgements of decision-making capacity. While the neuroscience of decision-making capacity still requires time to mature, there is strong reason to (...) believe that neuroscience might assist clinicians in adjudicating difficult cases in the future. This article focuses on the assessment of capacity in brain injury patients who have profound communication impairments, however, the overarching aim of the article is to highlight the potential use of neuroscience to improve our understanding of the relationship between cognition and decision-making capacity. (shrink)

This paper considers how a number of particular disabilities can impact agency primarily by affecting what psychologists refer to as ‘executive function.’ Some disabilities, I argue, could decrease agency even without fully undermining it. I see this argument as contributing to the growing literature that sees agency as coming in degrees. The first section gives a broad outline of a fairly standard approach to agency. The second section relates that framework to the existing literature, which suggests that agency comes in (...) degrees. The third section considers the psychological literature on executive function with a particular focus on how aspects of executive function contribute to agency. I then consider, in sections 4 and 5, two disabilities that have an impact on an agent’s executive function. Other disabilities will likely involve comparable impacts, although I don’t have time to explore additional disabilities in the present paper. (shrink)

There is a view that what we owe to other people is explained by the fact that they are human beings who share in a common human life. There are many ways of construing this explanatory idea, and I explore a few of these here; the aim is to look for constructions that contribute to an understanding of what we owe to people with profound and multiple learning difficulties and disabilities. In exploring the idea of sharing in a common life (...) I construe ‘sharing’ as ‘participating in’, and ‘common life’ as the social life characteristic of the environment that someone lives in. My principal purpose is to render the idea of sharing in a common life in terms that help explain its eligibility as a ground for establishing the moral status of people with PMLD. The participatory options I examine each make some call on agency, if only as something hoped for in the future, including when hope flies in the face of expectation. Accordingly I look at conceptions of actual and potential participation in social life, and at the idea of treating people as if they have the potential to participate, even when the existence of any such potential is unlikely. I conclude with some thoughts on the relation between participation and the moral status of profoundly disabled people, and about how much, and how little, the argument has achieved. (shrink)

The increasing focus on disability rights—as found, for instance, in the U.N. Convention on the Rights of Persons with Disabilities —challenges philosophical imaginaries. This article broadens the philosophical imaginary of freedom by exploring the relation of dependence, independence, and interdependence in the lives of people with disabilities. It argues that traditional concepts of freedom are rather insensitive to difference within humanity, and that the lives of people with severe disabilities challenge philosophers to argue and conceptualize freedom not only as independence (...) and interdependence but also as dependence. After tracing this need through a Hegelian understanding, via Julia Kristeva's work on disability, and finally the CRPD, it concludes that a unified solution might not be possible. Hence, it argues that disability issues necessitate philosophical modesty. (shrink)

Abstract:The ethical principle of autonomy requires physicians to respect patient autonomy when present, and to protect the patient who lacks autonomy. Fulfilling this ethical obligation when a patient has a communication impairment presents considerable challenges. Standard methods for evaluating decision-making capacity require a semistructured interview. Some patients with communication impairments are unable to engage in a semistructured interview and are at risk of the wrongful loss of autonomy. In this article, we present a general strategy for assessing decision-making capacity in (...) patients with communication impairments. We derive this strategy by reflecting on a particular case. The strategy involves three steps: (1) determining the reliability of communication, (2) widening the bandwidth of communication, and (3) using compensatory measures of decision-making capacity. We argue that this strategy may be useful for assessing decision-making capacity and preserving autonomy in some patients with communication impairments. (shrink)

Severe brain injury is a leading cause of death and disability. Following severe brain injury diagnosis is difficult and errors frequently occur. Recent findings in clinical neuroscience may offer a solution. Neuroimaging has been used to detect preserved cognitive function and awareness in some patients clinically diagnosed as being in a vegetative state. Remarkably, neuroimaging has also been used to communicate with some vegetative patients through a series of yes/no questions. Some have speculated that, one day, this method may allow (...) severely brain-injured patients to make medical decisions. Yet, skepticism is rife, due in part to the inherent difficulty of assessing decision-making capacity through neuroimaging communication. In this thesis, I provide the first systematic analysis of this problem. I present and defend a strategy for assessing decision-making capacity in brain-injured patients who can only communicate through neuroimaging. (shrink)