Informed Consent in Medicine

Aryeh Goldberg compellingly argues for a Narrative Coherence Standard (NCS) to bolster existing methods of assessing patients' mental capacity. But his account fails to distinguish between the cognitive abilities of children and adults; consequently, worries may be raised about the scope of the NCS, in particular when we consider child patients. In this article, I argue the NCS cannot plausibly apply to children. Since children's self-conception does not arrive fully formed — but rather is a product of both incomplete cognitive (...) development and socializing factors — I claim children may not possess a sufficiently intimate knowledge of self, and therefore a sufficiently coherent sense of self, as Goldberg demands. Therefore, we should either revise the NCS to accommodate children, adopt an incremental view of consent, or revert to the relevant form of the MacArthur competence criteria to establish children’s capacity to consent. (shrink)

Berger (forthcoming) states that moral intimacy is important in applying the best interests standard. But what he calls moral intimacy requires that someone has overcome epistemic burdens needed to represent the patient. We argue elsewhere that good surrogate decision-making is first and foremost a matter of overcoming epistemic burdens, or those obstacles that stand in the way of a surrogate decision-maker knowing what a patient wants and how to satisfy those preferences. Berger’s notion of moral intimacy depends on epistemic intimacy: (...) the fact that a surrogate's epistemic burdens with respect to the best interests of the incapacitated patient have been adequately surmounted, plus some other feature. Thus, where a particular patient-surrogate relationship fails to be morally intimate, what is lacking is either epistemic intimacy or this second feature. Furthermore, Berger uses the notion of moral intimacy as an explanans for the application of the best interests standard. We argue that the notions of epistemic intimacy and epistemic burdens not only help to explain the notion of moral intimacy, but also better explain the application of the best interests standard. Given the role of epistemic burdens and the epistemic intimacy that overcoming them enables, bioethicists and physicians should consider a surrogate’s epistemic standing relative to the patient’s best interests before pronouncing on the former’s ethical probity. (shrink)

Most people are completely oblivious to the danger that their medical data undergoes as soon as it goes out into the burgeoning world of big data. Medical data is financially valuable, and your sensitive data may be shared or sold by doctors, hospitals, clinical laboratories, and pharmacies—without your knowledge or consent. Medical data can also be found in your browsing history, the smartphone applications you use, data from wearables, your shopping list, and more. At best, data about your health might (...) end up in the hands of researchers on whose good will we depend to avoid abuses of power.2 Most likely, it will end up with data brokers who might sell it to a future employer, or an insurance company, or the government. At worst, your medical data may end up in the hands of criminals eager to commit extortion or identity theft. In addition to data harms related to exposure and discrimination, the collection of sensitive data by powerful corporations risks the creation of data monopolies that can dominate and condition access to health care. -/- This chapter aims to explore the challenge that big data brings to medical privacy. Section I offers a brief overview of the role of privacy in medical settings. I define privacy as having one’s personal information and one’s personal sensorial space (what I call autotopos) unaccessed. Section II discusses how the challenge of big data differs from other risks to medical privacy. Section III is about what can be done to minimise those risks. I argue that the most effective way of protecting people from suffering unfair medical consequences is by having a public universal healthcare system in which coverage is not influenced by personal data (e.g., genetic predisposition, exercise habits, eating habits, etc.). (shrink)

The author examines two proposals to expand legal recognition of individual control over physical integrity. Protections for individual autonomy are discussed in relation to the right to die, euthanasia, medical treatment, and consensual and assaultive sexual behaviours. The author argues that at present, the legal doctrine of consent protects only those individual preferences which are seen to be congruent with dominant societal values; social preferences and convenience override all other individual choices. Under these conditions, more freedom to waive rights of (...) physical integrity can only place socially vulnerable persons at great risk of abuse. (shrink)

In this paper, I answer the following question: suppose that two individuals, C and D, have been in a long-term committed relationship, and D now has dementia, while C is competent; if D agrees to have sex with C, is it permissible for C to have sex with D? Ultimately, I defend the view that, under certain conditions, D can give valid consent to sex with C, rendering sex between them permissible. Specifically, I argue there is compelling reason to endorse (...) the following thesis: -/- Prior Consent Thesis: D, when competent, can give valid prior consent to sex with her competent partner (C) that will take place after she has dementia, assuming that D is the same person as she was when she gave prior consent, meaning that, if D, when competent, gave prior consent to sex with C, then C may permissibly have sex with D. In section I, I explain both the background and the existing literature on this issue. In section II, I outline relevant stipulations about the kinds of cases I will be examining. In section III, I defend the Prior Consent Thesis. And, in section IV, I address objections to the Prior Consent Thesis. (shrink)

Patient preference predictors aim to solve the moral problem of making treatment decisions on behalf of incapacitated patients. This commentary on a case of an unrepresented patient at the end of life considers 3 related problems of such predictors: the problem of restricting the scope of inputs to the models (the “scope” problem), the problem of weighing inputs against one another (the “weight” problem), and the problem of multiple reasonable solutions to the scope and weight problems (the “multiple reasonable models” (...) problem). Each of these problems poses challenges to reliably implementing patient preference predictors in important, high-stakes health care decision making. This commentary also suggests a way forward. (shrink)

Florence Ashley has argued that requiring patients with gender dysphoria to undergo an assessment and referral from a mental health professional before undergoing hormone replacement therapy is unethical and may represent an unconscious hostility towards transgender people. We respond, first, by showing that Ashley has conflated the self-reporting of symptoms with self-diagnosis, and that this is not consistent with the standard model of informed consent to medical treatment. Second, we note that the model of informed consent involved in cosmetic surgery (...) resembles the model Ashley defends, and that psychological assessment and referral is recognised as an important aspect of such a model. Third, we suggest that the increased prevalence of psychiatric morbidity in the transgender population arguably supports the requirement of assessment and referral from a mental health professional prior to undergoing HRT. (shrink)

Animal-derived constituents are frequently used in anaesthesia and surgery, and patients are seldom informed of this. This is problematic for a growing minority of patients who may have religious or secular concerns about their use in their care. It is not currently common practice to inform patients about the use of animal-derived constituents, yet what little empirical data does exist indicates that many patients want the opportunity to give their informed consent. First, we review the nature and scale of the (...) problem by looking at the groups who may have concerns about the use of animal-derived constituents in their care. We then summarise some of the products used in anaesthesia and surgery that can contain such constituents, such as anaesthetic drugs, surgical implants and dressings. Finally, we explore the problem of animal-derived constituents and consent using Beauchamp and Childress’ four principles approach, examining issues of autonomy, beneficence, nonmaleficence and justice. Disclosing the use of animal-derived constituents in anaesthesia and surgery is warranted under Beauchamp and Childress’ four principles approach to the problem. Although there exist systemic and practical challenges to implementing this in practice, the ethical case for doing so is strong. The Montgomery ruling presents additional legal reason for disclosure because it entails that patients must be made aware of risks associated with their treatment that they attach significance to. (shrink)

The Substituted Judgment Standard (SJS) for surrogate decision-making dictates that a surrogate, when making medical decisions on behalf of an incapacitated patient, ought to make the decision that the patient would have made if the patient had decisional capacity. Despite its intuitive appeal, however, SJS has been the target of a variety of criticisms. Most objections to SJS appeal to epistemic difficulties involved in determining what a patient would have decided in a given case. In this paper, I offer an (...) alternative standard for surrogate decision-making that avoids these difficulties. I then offer an account of its theoretical underpinnings which shows that it preserves the central moral justification for SJS, namely, respect for patient autonomy. (shrink)

This article addresses two areas of continuing controversy about consent in clinical research: the question of when consent to low risk research is necessary, and the question of when consent to research is valid. The article identifies a number of considerations relevant to determining whether consent is necessary, chief of which is whether the study would involve subjects in ways that would (otherwise) infringe their rights. When consent is necessary, there is a further question of under what conditions consent is (...) valid or successful in waiving a right. The most influential account of validity conditions is non-moralized, in the sense that the conditions make no essential reference to whether the researcher soliciting consent has obtained it in a way that wrongs the subject. The article examines the implications of this account, and compares it with recent accounts that moralize some of the validity conditions. -/- . (shrink)

What should we do about children and young people who want to be tested for incurable, adult onset, genetic disorders? In particular, what should a general practitioner do if he or she believes the young person is competent to decide, but the regional genetics unit refuses to test anyone under 18? In this article I discuss such a case (drawn from actual practice, but anonymised), and consider the arguments for and against allowing the young person to be tested in terms (...) of good practice, case and statute law, empirical evidence, and ethics. (shrink)

Consensus statement by UK teachers of medical ethics and law.

Children and young people under 18 years old should no longer be regarded as incompetent to give or withhold consent in decisions involving their health care, Recent research suggests a functional test of cognitive and emotional maturity, rather than a strict age cut-off point. However, it is often difficult to implement these recommendations in practice, not least because the law is, if anything, increasingly 'hard-line' about children's autonomy.

Two general ethical problems in psychiatry are thrown into sharp relief by long term care. This article discusses each in turn, in the context of two anonymised case studies from actual clinical practice. First, previous mental health legislation soothed doubts about patients' refusal of consent by incorporating time limits on involuntary treatment. When these are absent, as in the provisions for long term care which have recently come into force, the justification for compulsory treatment and supervision becomes more obviously problematic. (...) Second, Anglo-American law does not normally allow the preventive detention of someone who may be dangerous but has not actually committed any crime. The justification for detaining a possibly dangerous user of mental health services without his or her consent can only be based on risk assessment, but this raises issues of moral luck. Is the psychiatrist who decides not to take out a supervision order for a possibly dangerous patient with an initial psychotic diagnosis morally at fault if that person harms someone in the community, or himself? Or is the psychiatrist merely unlucky? (shrink)

In this article we explore the underpinnings of what we view as a recent "backlash" in English law, a judicial reaction against considering children's and young people's expressions of their own feelings about treatment as their "true" wishes. We use this case law as a springboard to conceptual discussion, rooted in (a) empirical psychological work on child development and (b) three key philosophical ideas: rationality, autonomy and identity. Using these three concepts, we explore different understandings of our central theme, true (...) wishes. These different conceptual interpretations, we argue, help to elucidate important clinical questions in the area of children's informed consent to treatment. For example, how much should a child's own wishes count in making medical decisions? Does it make a difference if the child or young person is undergoing psychiatric treatment?—if in some sense her wishes are abnormal, not "true" expressions of what she really wants? If the child's wishes do not count, why not? If they do matter but count for less, how much less? We conclude by advocating functional tests of a young person's true wishes, applicable on a case-by-case basis, rather than a black-and-white distinction between "incompetent" children and "competent" adults. (shrink)

Anomaly in English law between age of children's permitted consent to treatment and much lower age of criminal responsibility.

A dilemma exists when a doctor is faced with a child or young person who refuses medically indicated treatment. The Gillick case has been interpreted by many to mean that a child of sufficient age and intelligence could validly consent or refuse consent to treatment. Recent decisions of the Court of Appeal on a child's refusal of medical treatment have clouded the issue and undermined the spirit of the Gillick decision and the Children Act 1989. It is now the case (...) that a child patient whose competence is in doubt will be found rational if he or she accepts the proposal to treat but may be found incompetent if he or she disagrees. Practitioners are alerted to the anomalies now exhibited by the law on the issue of children's consent and refusal. The impact of the decisions from the perspectives of medicine, ethics, and the law are examined. Practitioners should review each case of child care carefully and in cases of doubt seek legal advice. (shrink)

What does it mean to respect autonomy and encourage meaningful consent to treatment in the case of patients who have dementia or are otherwise incompetent? This question has been thrown into sharp relief by the Law Lords' decision in R.v Bournewood Community and Mental Health NHS Trust, ex parte L.

This article looks at the question of sin and disease in bioethics with a spiritual-theological analysis from the book of Job. The biblical figure Job is an innocent and just man who suffered horrendously. His dialogues with others—his wife, his friends, and God—can give many valuable insights for patients who suffer and for those who interact with them. Family, friends, physicians, nurses, chaplains, and pastoral workers can learn from Job how to communicate properly with sufferers. The main question for Job (...) was how to maintain the tension between God’s justice and God’s mercy and not yield to the temptation of cursing God but to speak well of Him in moments of difficulties. (shrink)

Introduction Current treatments for pain have limited benefits and worrying side effects. Some studies suggest that pain is reduced when clinicians deliver positive messages. However, the effects of positive messages are heterogeneous and have not been subject to meta-analysis. We aimed to estimate the efficacy of positive messages for pain reduction. -/- Methods We included randomized trials of the effects of positive messages in a subset of the studies included in a recent systematic review of context factors for treating pain. (...) Several electronic databases were searched. Reference lists of relevant studies were also searched. Two authors independently undertook study selection, data extraction, risk of bias assessment, and analyses. Our primary outcome measures were differences in patient- or observer-reported pain between groups who were given positive messages and those who were not. -/- Results Of the 16 randomized trials (1703 patients) that met the inclusion criteria, 12 trials had sufficient data for meta-analysis. The pooled standardized effect size was −0.31 (95% confidence interval [CI] −0.61 to −0.01, p = 0.04, I2 = 82%). The effect size remained positive but not statistically significant after we excluded studies considered to have a high risk of bias (standard effect size −0.17, 95% CI −0.54 to 0.19, P = 0.36, I2 = 84%). -/- Conclusion Care of patients with chronic or acute pain may be enhanced when clinicians deliver positive messages about possible clinical outcomes. However, we have identified several limitations of the present study that suggest caution when interpreting the results. We recommend further high-quality studies to confirm (or falsify) our result. -/- FUNDING -/- Alexander Mebius research has been funded through the ERC grant "Philosophy of Pharmacology: Safety, Statistical Standards, and Evidence Amalgamation" (GA: 639276). (shrink)

In states where Physician Assisted Dying (PAD) is legal, physicians occasionally receive requests for this form of end-of-life care. Here, I describe the ethically ambiguous sphere and why PAD falls into it. I argue that, given the ethical ambiguity of PAD, physicians should consider patient autonomy as the highest value in the four principles approach and act as informers and educators.

According to many of its proponents, shared decision making ("SDM") is the right way to interpret the clinician-patient relationship because it respects patient autonomy in decision-making contexts. In particular, medical ethicists have claimed that SDM respects a patient's relational autonomy understood as a capacity that depends upon, and can only be sustained by, interpersonal relationships as well as broader health care and social conditions. This paper challenges that claim. By considering two primary approaches to relational autonomy, this paper argues that (...) standard accounts of SDM actually undermine patient autonomy. It also provides an overview of the obligations generated by the principle of respect for relational autonomy that have not been captured in standard accounts of SDM and which are necessary to ensure consistency between clinical practice and respect for patient autonomy. (shrink)

We discuss the role of prior authorization (PA) in supporting patient-centered care (PCC) by directing health system resources and thus the ability to better meet the needs of individual patients. We begin with an account of PCC as a standard that should be aimed for in patient care. In order to achieve widespread PCC, appropriate resource management is essential in a healthcare system. This brings us to PA, and we present an idealized view of PA in order to argue how (...) at its best, it can contribute to the provision of PCC. PA is a means of cost saving and as such it has mixed success. The example of the US demonstrates how implementation of PA has increased health inequalities whereas best practice has the potential to reduce them. In contrast, systems of universal coverage, like those in Europe, may use the cost savings of PA to better address individuals' care and PCC. The conclusion we offer therefore is an optimistic one, pointing towards areas of supportive overlap between PCC and PA where usually the incongruities are most evident. (shrink)

Despite the lack of evidence for their effectiveness, the use of physical restraints for patients is widespread. The best ethical justification for restraining patients is that it prevents them from harming themselves. We argue that even if the empirical evidence supported their effectiveness in achieving this aim, their use would nevertheless be unethical, so long as well known exceptions to informed consent fail to apply. Specifically, we argue that ethically justifiable restraint use demands certain necessary and sufficient conditions. These conditions (...) are that the physician obtain informed consent for their application, that their application be medically appropriate, and that restraints be the least liberty-restricting way of achieving the intended benefit. It is a further question whether their application is ever medically appropriate, given the dearth of evidence for their effectiveness. (shrink)

Deep Brain Stimulation is currently being investigated as an experimental treatment for patients suffering from treatment-refractory AN, with an increasing number of case reports and small-scale trials published. Although still at an exploratory and experimental stage, initial results have been promising. Despite the risks associated with an invasive neurosurgical procedure and the long-term implantation of a foreign body, DBS has a number of advantageous features for patients with SE-AN. Stimulation can be fine-tuned to the specific needs of the particular patient, (...) is relatively reversible, and the technique also allows for the crucial issue of investigating and comparing the effects of different neural targets. However, at a time when DBS is emerging as a promising investigational treatment modality for AN, lesioning procedures in psychiatry are having a renaissance. Of concern it has been argued that the two kinds of interventions should instead be understood as rivaling, yet “mutually enriching paradigms” despite the fact that lesioning the brain is irreversible and there is no evidence base for an effective target in AN. We argue that lesioning procedures in AN are unethical at this stage of knowledge and seriously problematic for this patient group, for whom self-control is particularly central to wellbeing. They pose a greater risk of major harms that cannot justify ethical equipoise, despite the apparent superiority in reduced short term surgical harms and lower cost. (shrink)

Under the current Mental Health Act of England and Wales, it is lawful to perform deep brain stimulation in the absence of consent and independent approval. We argue against the Care Quality Commission's preferred strategy of addressing this problematic issue, and offer recommendations for deep brain stimulation-specific provisions in a revised Mental Health Act.

contents -/- i. short review: The Intern -/- ii. the confusion of Chinatown -/- iii. we'll remember water, in Theology -/- iv. Respironics versus ResMed -/- v. i'd bet my life, my home and happiness -/- vi. hypothetic as a deaththreat -/- vii. the Mad Max deity -/- viii. they'd kill my rat, not heal him .

According to what Douglas calls ‘the consent requirement’, neuro-correctives can only permissibly be provided with the valid consent of the offender who will undergo the intervention. Some of those who endorse the consent requirement have claimed that even though the requirement prohibits the imposition of mandatory neurocorrectives on criminal offenders, it may yet be permissible to offer offenders the opportunity to consent to undergoing such an intervention, in return for a reduction to their penal sentence. I call this the neurocorrective (...) offer. In this chapter I consider the coercion-based objection to the neurocorrective offer, which claims that offenders cannot provide valid consent to undergoing a neurocorrective on the basis of this offer because it is inherently coercive. Having outlined early formulations of this argument, I point out that there are in fact two different versions of this objection, which appeal to different understandings of the concepts of coercion, consent and voluntariness. (shrink)

Deep brain stimulation has been of considerable interest to bioethicists, in large part because of the effects that the intervention can occasionally have on central features of the recipient’s personality. These effects raise questions regarding the philosophical concept of authenticity. In this article, we expand on our earlier work on the concept of authenticity in the context of deep brain stimulation by developing a diachronic, value-based account of authenticity. Our account draws on both existentialist and essentialist approaches to authenticity, and (...) Laura Waddell Ekstrom’s coherentist approach to personal autonomy. In developing our account, we respond to Sven Nyholm and Elizabeth O’Neill’s synchronic approach to authenticity, and explain how the diachronic approach we defend can have practical utility, contrary to Alexandre Erler and Tony Hope’s criticism of autonomy-based approaches to authenticity. Having drawn a distinction between the authenticity of an individual’s traits and the authenticity of that person’s values, we consider how our conception of authenticity applies to the context of anorexia nervosa in comparison to other prominent accounts of authenticity. We conclude with some reflections on the prudential value of authenticity, and by highlighting how the language of authenticity can be invoked to justify covert forms of paternalism that run contrary to the value of individuality that seems to be at the heart of authenticity. (shrink)

In this paper, I argue that deceptive placebo use can be morally permissible, on the grounds that the deception involved in the prescription of deceptive placebos can differ in kind to the sorts of deception that undermine personal autonomy. In order to argue this, I shall first delineate two accounts of why deception is inimical to autonomy. On these accounts, deception is understood to be inimical to the deceived agent’s autonomy because it either involves subjugating the deceived agent’s will to (...) another’s authority or because it precludes the agent from acting effectively in pursuit of their ends. I shall argue that providing an agent with false beliefs is not inimical to their autonomy if they are only able to effectively pursue their autonomously chosen ends by virtue of holding those particular false beliefs. Finally, I show that deceptive placebo use need only involve this latter sort of deception. (shrink)

Mitochondrial replacement therapy requires oocytes of women whose mitochondrial DNA will be transmitted to resultant children. These techniques are scientifically, ethically and socially controversial; it is likely that some women who donate their oocytes for general in vitro fertilisation usage would nevertheless oppose their genetic material being used in MRT. The possibility of oocytes being used in MRT is therefore relevant to oocyte donation and should be included in the consent process when applicable. In present circumstances, specific consent should be (...) obtained. However, once MRT becomes more routine, such consent could be incorporated into the general consent process for oocyte donation. The reported lack of proper consent for MRT from the oocyte donor in the first baby born via the technique is an ethical failing and should be corrected in any future practice of MRT. (shrink)

A properly programmed artificially intelligent agent may eventually have one duty, the duty to satisfice expected welfare. We explain this claim and defend it against objections.

Mindfulness exercises are presented as being compatible with almost any spiritual, religious or philosophical beliefs. In this paper, we argue that they in fact involve imagining and conceptualising rather striking and controversial claims about the self, and the self’s relationship to thoughts and feelings. For this reason, practising mindfulness exercises is likely to be in tension with many people’s core beliefs and values, a tension that should be treated as a downside of therapeutic interventions involving mindfulness exercises, not unlike a (...) side effect. Clients ought to be informed of these metaphysical aspects of the exercises, and mental health providers ought to take them into account in assessing which course of treatment to recommend. Given these concerns, the casual way in which mindfulness exercises are presently distributed by mental health providers to the general public is inappropriate. (shrink)

In this issue, Elizabeth Shaw and Gulzaar Barn offer a number of replies to my arguments in ‘Criminal Rehabilitation Through Medical Intervention: Moral Liability and the Right to Bodily Integrity’, Journal of Ethics. In this article I respond to some of their criticisms.

It is widely accepted among medical ethicists that competence is a necessary condition for informed consent. In this view, if a patient is incompetent to make a particular treatment decision, the decision must be based on an advance directive or made by a substitute decision-maker on behalf of the patient. We call this the competence model. According to a recent report of the United Nations (UN) High Commissioner for Human Rights, article 12 of the UN Convention on the Rights of (...) Persons with Disabilities (CRPD) presents a wholesale rejection of the competence model. The High Commissioner here adopts the interpretation of article 12 proposed by the Committee on the Rights of Persons with Disabilities. On this interpretation, CRPD article 12 renders it impermissible to deny persons with mental disabilities the right to make treatment decisions on the basis of impaired decision-making capacity and demands the replacement of all regimes of substitute decision-making by supported decision-making. In this paper, we explicate six adverse consequences of CRPD article 12 for persons with mental disabilities and propose an alternative way forward. The proposed model combines the strengths of the competence model and supported decision-making. (shrink)

The notion of respect for autonomy dominates bioethical discussion, though what qualifies precisely as autonomous action is notoriously elusive. In recent decades, the notion of autonomy in medical contexts has often been defined in opposition to the notion of autonomy favoured by theoretical philosophers. Where many contemporary theoretical accounts of autonomy place emphasis on a condition of “authenticity”, the special relation a desire must have to the self, bioethicists often regard such a focus as irrelevant to the concerns of medical (...) ethics, and too stringent for use in practical contexts. I argue, however, that the very condition of authenticity that forms a focus in theoretical philosophy is also essential to autonomy and competence in medical ethics. After tracing the contours of contemporary authenticity-based theories of autonomy, I consider and respond to objections against the incorporation of a notion of authenticity into accounts of autonomy designed for use in medical contexts. By looking at the typical problems that arise when making judgments concerning autonomy or competence in a medical setting, I reveal the need for a condition of authenticity—as a means of protecting choices, particularly high-stakes choices, from being restricted or overridden on the basis of intersubjective disagreement. I then turn to the treatment of false and contestable beliefs, arguing that it is only through reference to authenticity that we can make important distinctions in this domain. Finally, I consider a potential problem with my proposed approach; its ability to deal with anorexic and depressive desires. (shrink)

A common critique of nudges is that they reduce someone's of choices or elicit behavior through means other than rational persuasion. In this paper, I argue against this form of critique. I argue that, if there is anything distinctively worrisome about nudges from the standpoint of morality, it is is their tendency to hide the amount of social control that they embody, undermining democratic governance by making it more difficult for members of a political community to detect the social architect’s (...) pulling of the strings. This concern is particularly salient as to choices where it is important for people to directly engage with a certain set of values, “big personal decisions” (to use a simplifying phrase). Many healthcare decisions are exactly these kinds of choices. (shrink)

While several tests and strategies are recommended for colorectal cancer (CRC) screening, studies suggest that primary care providers often recommend colonoscopy without providing information about its risks or alternatives. These observations raise concerns about the quality of informed consent for screening colonoscopy.

Patients should not always receive hard data about the risks and benefits of a medical intervention. That information should always be available to patients who expressly ask for it, but it should be part of standard disclosure only sometimes, and only for some patients. And even then, we need to think about how to offer it.

Some experts have argued that patients should routinely be told the specific magnitude and absolute probability of potential risks and benefits of screening tests. This position is motivated by the idea that framing risk information in ways that are less precise violates the ethical principle of respect for autonomy and its application in informed consent or shared decisionmaking. In this Perspective, we consider a number of problems with this view that have not been adequately addressed. The most important challenges stem (...) from the danger that patients will misunderstand the information or have irrational responses to it. Any initiative in this area should take such factors into account and should consider carefully how to apply the ethical principles of respect for autonomy and beneficence. (shrink)

It is sometimes argued that autonomous decision-making requires that the decision-maker’s desires are authentic, i.e., “genuine,” “truly her own,” “not out of character,” or similar. In this article, it is argued that a method to reliably determine the authenticity (or inauthenticity) of a desire cannot be developed. A taxonomy of characteristics displayed by different theories of authenticity is introduced and applied to evaluate such theories categorically, in contrast to the prior approach of treating them individually. The conclusion is drawn that, (...) in practice, the authenticity of desires cannot be reliably determined. It is suggested that authenticity should therefore not be employed in informed consent practices in healthcare. (shrink)

Despite being assailed for decades by disability activists and disability studies scholars spanning the humanities and social sciences, the medical model of disability—which conceptualizes disability as an individual tragedy or misfortune due to genetic or environmental insult—still today structures many cases of patient–practitioner communication. Synthesizing and recasting work done across critical disability studies and philosophy of disability, I argue that the reason the medical model of disability remains so gallingly entrenched is due to what I call the “ableist conflation” of (...) disability with pain and suffering. In an effort to better equip healthcare practitioners and those invested in health communication to challenge disability stigma, discrimination, and oppression, I lay out the logic of the ableist conflation and interrogate examples of its use. I argue that insofar as the semiosis of pain and suffering is structured by the lived experience of unwelcome bodily transition or variation, experiences of pain inform the ableist conflation by preemptively tying such variability and its attendant disequilibrium to disability. I conclude by discussing how philosophy of disability and critical disability studies might better inform health communication concerning disability, offering a number of conceptual distinctions toward that end. (shrink)

BACKGROUND: Little is known about how hospitalized patients share decisions with physicians. METHODS: We conducted an observational study of patient-doctor communication on an inpatient medicine service among 18 hospitalized patients and 9 physicians. A research assistant (RA) approached newly hospitalized patients and their physicians before morning rounds and obtained consent. The RA audio recorded morning rounds, and then separately interviewed both patient and physician. Coding was done using integrated analysis. RESULTS: Most patients were white (61%) and half were female. Most (...) physicians were male (66%) and of Southeast Asian descent (66%). All physicians explained the plan of care to the patients; most believed that their patient understood. However, many patients did not. Physicians rarely asked the patient for their opinion. In all those cases, the decision had been made previously by the doctors. No decisions were made with the patient. Patients sometimes disagreed. CONCLUSIONS: Shared decision-making may not be the norm in hospital care. Although physicians do explain treatment plans, many hospitalized patients do not understand enough to share in decisions. When patients do assert their opinion, it can result in conflict. PRACTICE IMPLICATIONS: Some hospitalized patients are interested in discussing treatment. Improving hospital communication can foster patient autonomy. (shrink)

A high level of confidence in the identity of individuals is required to let them die as ordered by an advance directive. Thus, if we are animalists, then we should lack the confidence required to apply lethal advance directives to the cheerfully demented, or so I argue. In short, there is consensus among animalists that the best way to avoid serious objections to their account is to adopt an ontology that denies the existence of brains, hands, tables, chairs, iced-tea, and (...) lemonade. The adoption of such an ontology reduces the justificatory force of commonsense, which is key in arguing that we are animals and that we persist as long as we are biologically alive. With this loss of justification comes the loss of a high level of confidence that Quinn-pre-dementia’s lethal advanced directive applies to Quinn-post-dementia, via identity. If we do not have a high level of confidence that Quinn-pre-dementia’s advanced directive applies to Quinn-post- dementia, then it is not enough (on its own) to let Quinn-post-dementia die. (shrink)

In this paper we analyze the non-coercive ways in which researchers can use knowledge about the decision-making tendencies of potential participants in order to motivate them to consent to research enrollment. We identify which modes of influence preserve respect for participants’ autonomy and which disrespect autonomy, and apply the umbrella term of manipulation to the latter. We then apply our analysis to a series of cases adapted from the experiences of clinical researchers in order to develop a framework for thinking (...) through the ethics of manipulating people into research participation. All manipulation disrespects autonomy and is therefore pro tanto wrong. However, only deceptive manipulation invalidates the consent that results from it. Use of the other forms of manipulation can be permissible, but only if the outcome of using manipulation is sufficiently good and if the research cannot be carried out using ethically preferable means to obtain consent. (shrink)