It was in the course of one particular clinical encounter that I came to realize the power of narrative, especially for expressing clinically presented ethical matters. In Husserlian terms, the mode of evidence proper to the unique and the singular is the very indirection that is the genius of story-telling. Moreover, the clinical consultant is unavoidably changed by his or her clinical involvement. The individuals whose situation is at issue have their own stories that need telling. Clinical ethics is in (...) this sense a way of helping patients, families, and, yes, health providers to discover and give voice to those stories. In this way, clinical ethics is an evoking of meaning. Kierkegaard understood this well: Indirect communication is the language for the unique and the otherwise inexpressible. (shrink)

Are there some newborn infants whose short- and long-term care costs are so great that treatment should not be provided and they should be allowed to die? Public discourse and academic debate about the ethics of newborn intensive care has often shied away from this question. There has been enough ink spilt over whether or when for the infant's sake it might be better not to provide life-saving treatment. The further question of not saving infants because of inadequate resources has (...) seemed too difficult, too controversial, or perhaps too outrageous to even consider. However, Roman Catholic ethicist Charles Camosy has recently challenged this, arguing that costs should be a primary consideration in decision-making in neonatal intensive care. In the first part of this paper I will outline and critique Camosy's central argument, which he calls the ‘social quality of life (sQOL)’ model. Although there are some conceptual problems with the way the argument is presented, even those who do not share Camosy's Catholic background have good reason to accept his key point that resources should be considered in intensive care treatment decisions for all patients. In the second part of the paper, I explore the ways in which we might identify which infants are too expensive to treat. I argue that both traditional personal ‘quality of life’ and Camosy's ‘sQOL’ should factor into these decisions, and I outline two practical proposals. (shrink)

The four thoughtful commentaries on our feature article draw out interesting empirical and normative questions. The aim of our study was to examine the views of a sample of the general public about a set of cases of disputed treatment for severely impaired infants.1 We compared those views with legal determinations that treatment was or was not in the infants’ best interests, and with some published ethical frameworks for decisions. We deliberately did not draw explicit ethical conclusions from our survey (...) findings, both because of the acknowledged limitations of survey methodology, and because survey conclusions cannot, in themselves, yield answers about what the right threshold should be for providing or withholding treatment.2 In this brief response, we are going to address head-on the important ethical question raised within our survey – when life is worth living for an infant. We follow-up on the suggestion of two commentators that the presence or absence of “relational potential” might be ethically important to report in studies of the outcome of severely impaired infants,3 and to whether parental requests for treatment should be supported.4 The notion of “relational potential” was introduced by John Arras in a 1984 commentary.5 Arras was responding to the Baby Doe Regulations and a …. (shrink)

Life-sustaining treatment is sometimes withdrawn or withheld from critically ill newborn infants with poor prognosis. Guidelines relating to such decisions place emphasis on the best interests of the infant. However, in practice, parental views and parental interests are often taken into consideration.In this paper I draw on the example of newborn infants with severe muscle weakness (for example spinal muscular atrophy). I provide two arguments that parental interests should be given some weight in decisions about treatment, and that they should (...) be given somewhat more weight in decisions about newborns than for older children. Firstly, the interests of the infant and of parents intersect, and are hard to separate. Parents’ views about treatment may be relevant to an assessment of the infant’s interests, and they may also affect those interests. Secondly, the interests of the infant in her future are relatively reduced by her developmental immaturity. In some situations parents’ welfare interests outweigh those of the infant. However, I argue that this would not justify treatment limitation except in the setting of severe impairment. (shrink)

Disability might be relevant to decisions about life support in intensive care in several ways. It might affect the chance of treatment being successful, or a patient’s life expectancy with treatment. It may affect whether treatment is in a patient’s best interests. However, even if treatment would be of overall benefit it may be unaffordable and consequently unable to be provided. In this paper we will draw on the example of neonatal intensive care, and ask whether or when it is (...) justified to ration life-saving treatment on the basis of disability. We argue that predicted disability is relevant both indirectly and directly to rationing decisions. (shrink)

When is it permissible to allow a newborn infant to die on the basis of their future quality of life? The prevailing official view is that treatment may be withdrawn only if the burdens in an infant's future life outweigh the benefits. In this paper I outline and defend an alternative view. On the Threshold View, treatment may be withdrawn from infants if their future well-being is below a threshold that is close to, but above the zero-point of well-being. I (...) present four arguments in favor of the Threshold View, and identify and respond to several counterarguments. I conclude that it is justifiable in some circumstances for parents and doctors to decide to allow an infant to die even though the infant's life would be worth living. The Threshold View provides a justification for treatment decisions that is more consistent, more robust, and potentially more practical than the standard view. (shrink)

The celebration of thirty years of publication of The Journal of Medicine and Philosophy provides an opportunity to reflect on how medical ethics has evolved over that period. The reshaping of the field has occurred in no small part because of the impact of branches of philosophy other than ethics. These have included influences from Kantian theory of respect for persons, personal identity theory, philosophy of biology, linguistic analysis of the concepts of health and disease, personhood theory, epistemology, and political (...) philosophy. More critically, medicine itself has begun to be reshaped. The most fundamental restructuring of medicine is currently occurring - stemming, in part, from the application of contemporary philosophy of science to the medical field. There is no journal more central to these critical events of the past three decades than The Journal of Medicine and Philosophy. (shrink)

The paper analyses the application of the best interest standard in the medical care of extremely preterm babies. It proposes that as long as the parents base their decision on a well-founded medical opinion regarding the neonate’s diagnosis and prognosis and are not victims of superstition or prejudice, medical professionals are obligated to respect the parents’ informed consent, even if the professionals disagree with the parents’ opinion. In their assessments of the neonate’s interest, medical professionals can be primarily guided by (...) their judgment regarding its diagnosis and prognosis. By contrast, the personal involvement of the parents in the decision-making process, their values and the family-specific context of the infant’s possible future makes their opinion regarding the infant’s interests significantly more convincing than the opinions of other persons involved. (shrink)

(2010). Ashley's Interests Were Not Violated Because She Does Not Have the Necessary Interests. The American Journal of Bioethics: Vol. 10, No. 1, pp. 52-54.

It may seem paradoxical to speak of the ‘goodlife’ for demented elderly. Many people consider dementia to be a life-wrecking disease and nursing homes to be terrible places. Still, it is relevant to ask how we can make life as good as possible for demented nursing home residents. This paper explores what three standard philosophical accounts of well-being — subjective preference theory, objectivist theories, and hedonism — have to say about the good life for demented people. It is concluded that (...) the relevant differences between the various philosophical theories manifest themselves not so much in their general account of the substantial content of ‘the good life’ but in a number of specific controversies. These concern the nature of well-being, the necessity of endorsement by the patient, the value of experience and the need for experiences to be rooted in reality. Moreover, it is argued that further research should pay detailed attention to the process of dementia and to the effects of this process on patients' identities, self-conceptions, capacities, preferences, values and the like, and that a narrative approach which incorporates the factor time may offer a more comprehensive account of the good life for demented elderly. (shrink)

One recurring criticism of the best interests standard concerns its vagueness, and thus the inadequate guidance it offers to care providers. The lack of an agreed definition of ‘best interests’, together with the fact that several suggested considerations adopted in legislation or professional guidelines for doctors do not obviously apply across different groups of persons, result in decisions being made in murky waters. In response, bioethicists have attempted to specify the best interests standard, to reduce the indeterminacy surrounding medical decisions. (...) In this paper, we discuss the bioethicists’ response in relation to the state's possible role in clarifying the best interests standard. We identify and characterise two clarificatory strategies employed by bioethicists —elaborative and enumerative—and argue that the state should adopt the latter. Beyond the practical difficulties of the former strategy, a state adoption of it would inevitably be prejudicial in a pluralistic society. Given the gravity of best interests decisions, and the delicate task of respecting citizens with different understandings of best interests, only the enumerative strategy is viable. We argue that this does not commit the state to silence in providing guidance to and supporting healthcare providers, nor does it facilitate the abuse of the vulnerable. Finally, we address two methodological worries about adopting this approach at the state level. The adoption of the enumerative strategy is not defeatist in attitude, nor does it eventually collapse into (a form of) the elaborative strategy. (shrink)

The recent ruling from England on the case of M is one of very few worldwide to consider whether life-sustaining treatment, in the form of clinically assisted nutrition and hydration, should continue to be provided to a patient in a minimally conscious state. Formally concerned with the English law pertaining to precedent autonomy (specifically advance decision-making) and the best interests of the incapacitated patient, the judgment issued in M's case implicitly engages with three different accounts of the value of human (...) life, which respectively emphasise its self-determined, intrinsic and instrumental value. The judge appeared to be most persuaded by the intrinsic value of life and he concluded that treatment ought to continue. Assessing whether his approach or conclusion were ethically appropriate involves significant substantive and evidential questions regarding where the burden of proof should lie and what standard of proof should be required when decisions are to be made about the fates of patients inhabiting ‘twilight worlds’. (shrink)

Law’s processes are likely always to be needed when particularly intractable conflicts arise in relation to the care of a critically ill child like Charlie Gard. Recourse to law has its merits, but it also imposes costs, and the courts’ decisions about the best interests of such children appear to suffer from uncertainty, unpredictability and insufficiency. The insufficiency arises from the courts’ apparent reluctance to enter into the ethical dimensions of such cases. Presuming that such reflection is warranted, this article (...) explores alternatives to the courts, and in particular the merits of specialist ethics support services, which appear to be on the rise in the UK. Such specialist services show promise, as they are less formal and adversarial than the courts and they appear capable of offering expert ethical advice. However, further research is needed into such services – and into generalist ethics support services – in order to gauge whether this is indeed a promising development. (shrink)

Medical ethics would be better if people were taught to think more clearly about well-being or the concept of what is good for a person. Yet for a variety of reasons, bioethicists have generally paid little attention to this concept. Here, I argue, first, that focusing on general theories of welfare is not useful for practical medical ethics. I argue, second, for what I call the “theory-without-theories approach” to welfare in practical contexts. The first element of this approach is a (...) focus on examining important and relatively uncontroversial constituents of welfare as opposed to general theories. The second key element is a framework for thinking about choice in relation to welfare, a framework I refer to as “the mild objectivity framework.” I conclude with illustrations of the way in which the “theory without theories approach” can improve thinking in medicine. (shrink)

The principle of beneficence directs healthcare practitioners to promote patients’ well-being, ensuring that the patients’ best interests guide treatment decisions. Because there are a number of distinct theories of well-being that could lead to different conclusions about the patient’s good, a careful consideration of which account is best suited for use in the medical context is needed. While there has been some discussion of the differences between subjective and objective theories of well-being within the bioethics literature, less attention has been (...) given to the questions of what work a theory of well-being needs to do in bioethics and which standards of success ought to be used in selecting a theory of well-being for use in medicine. In this article, I argue that traditional theories of well-being developed in philosophy are not well suited to meet the needs of the medical context. For the principle of beneficence to be most useful, the underlying account of well-being should satisfy two conditions: first, it needs to lead to a concrete, action-guiding determination of the patient’s good; and, second, any recommendations it offers need to be justifiable to patients. Standard accounts of well-being have difficulty satisfying both conditions. Exploring the limitations of these theories when applied to treatment dilemmas helps point the way toward the development of an account of well-being better suited to healthcare. (shrink)

Volume 20, Issue 3, March 2020, Page 71-73.

Volume 20, Issue 3, March 2020, Page 73-74.

This essay examines the fundamental role of veterinarians in companion animal practice by developing the idea of veterinarians as strong advocates for their nonhuman animal patients. While the practitioner-patient relationship has been explored extensively in medical ethics, the relation between practitioner and animal patient has received relatively less attention in the expanding but still young field of veterinary ethics. Over recent decades, social and professional ethical perspectives on human-animal relationships have undergone major change. Today, the essential role of veterinarians is (...) not entirely clear. Furthermore, veterinarians routinely face pressure, often insidious, to refrain from pursuing their patients’ vital interests. In exploring the concept of strong patient advocacy, this essay investigates the increasingly common suggestion that veterinarians have ‘primary obligation’ and ‘first allegiance’ to their animal patients rather than to other parties, such as their clients or employers. The related concept of a fiduciary duty, which is sometimes encountered in medical ethics, is similarly explored as it applies to companion animal practice. The resultant idea of a strong patient advocate places companion animal veterinarians conceptually and ethically close to human health professionals, not least pediatricians. (shrink)

In this paper, I outline a proposal for assigning liability for autonomous machines modeled on the doctrine of respondeat superior. I argue that the machines’ users’ or designers’ liability should be determined by the manner in which the machines are created, which, in turn, should be responsive to considerations of the machines’ welfare interests. This approach has the twin virtues of promoting socially beneficial design of machines, and of taking their potential moral patiency seriously. I then argue for abandoning the (...) retributive approach to machine crime in favor of prioritizing restitution. I argue that this shift better conforms to what justice demands when sophisticated artificial agents of uncertain moral status are concerned. (shrink)

BackgroundDecisions about withdrawal of life support for infants have given rise to legal battles between physicians and parents creating intense media attention. It is unclear how we should evaluate when life is no longer worth living for an infant. Public attitudes towards treatment withdrawal and the role of parents in situations of disagreement have not previously been assessed.MethodsAn online survey was conducted with a sample of the UK public to assess public views about the benefit of life in hypothetical cases (...) similar to real cases heard by the UK courts. We then evaluated these public views in comparison with existing ethical frameworks for decision-making.ResultsOne hundred and thirty participants completed the survey. The majority agreed that an infant’s life may have no benefit when well-being falls below a critical level. Decisions to withdraw treatment were positively associated with the importance of use of medical resources, the infant’s ability to have emotional relationships, and mental abilities. Up to 50% of participants in each case believed it was permissible to either continue or withdraw treatment.ConclusionDespite the controversy, our findings indicate that in the most severe cases, most people agree that life is not worth living for a profoundly disabled infant. Our survey found wide acceptance of at least the permissibility of withdrawal of treatment across a range of cases, though also a reluctance to overrule parents’ decisions. These findings may be useful when constructing guidelines for clinical practice. (shrink)

Background Best interests is a ubiquitous principle in medical policy and practice, informing the treatment of both children and adults. Yet theory underlying the concept of best interests is unclear and rarely articulated. This paper examines bioethical literature for theoretical accounts of best interests to gain a better sense of the meanings and underlying philosophy that structure understandings. Methods A scoping review of was undertaken. Following a literature search, 57 sources were selected and analysed using the thematic method. Results Three (...) themes emerged. The first placed best interests within the structure of wider theory, noting relationships with consequentialism, deontology, prudential value theory, rights and political philosophy. The second mapped a typology of processes of decision-making, among which best interests was ambiguously positioned. It further indicated factors that informed best interests decision-making, primarily preferences, dignity and quality of life. The final theme considered best interests from a relational perspective. Conclusions Characterisation of best interests as strictly paternalist and consequentialist is questionable: while accounts often suggested a consequentialist basis for best interests, arguments appeared philosophically weak. Deontological accounts, found in law and Kantianism, and theories of political liberalism influenced accounts of best interests, with accounts often associating best interests with negative patient preferences (i.e. individual refusals). There was much more emphasis on negative interests than positive interests. Besides preference, factors like dignity and quality of life were held to inform best interests decisions, but generally were weakly defined. To the extent that preferences were unable to inform decision making, decisions were either made by proxy authority or by an intersubjective process of diffuse authority. Differing approaches reflect bifurcations in liberal philosophy between new liberalism and neo-liberalism. Although neither account of authority appears dominant, bias to negative interests suggests that bioethical debate tends to reflect the widespread ascendancy of neo-liberalism. This attitude was underscored by the way relational accounts converged on private familial authority. The visible connections to theory suggest that best interests is underpinned by socio-political trends that may set up frictions with practice. How practice negotiates these frictions remains a key question. (shrink)

A growing number of bioethics papers endorse the harm threshold when judging whether to override parental decisions. Among other claims, these papers argue that the harm threshold is easily understood by lay and professional audiences and correctly conforms to societal expectations of parents in regard to their children. English law contains a harm threshold which mediates the use of the best interests test in cases where a child may be removed from her parents. Using Diekema9s seminal paper as an example, (...) this paper explores the proposed workings of the harm threshold. I use examples from the practical use of the harm threshold in English law to argue that the harm threshold is an inadequate answer to the indeterminacy of the best interests test. I detail two criticisms: First, the harm standard has evaluative overtones and judges are loath to employ it where parental behaviour is misguided but they wish to treat parents sympathetically. Thus, by focusing only on ‘substandard’ parenting, harm is problematic where the parental attempts to benefit their child are misguided or wrong, such as in disputes about withdrawal of medical treatment. Second, when harm is used in genuine dilemmas, court judgments offer different answers to similar cases. This level of indeterminacy suggests that, in practice, the operation of the harm threshold would be indistinguishable from best interests. Since indeterminacy appears to be the greatest problem in elucidating what is best, bioethicists should concentrate on discovering the values that inform best interests. (shrink)

In the western healthcare, shared decision making has become the orthodox approach to making healthcare choices as a way of promoting patient autonomy. Despite the fact that the autonomy paradigm is poorly suited to paediatric decision making, such an approach is enshrined in English common law. When reaching moral decisions, for instance when it is unclear whether treatment or non-treatment will serve a child’s best interests, shared decision making is particularly questionable because agreement does not ensure moral validity. With reference (...) to current common law and focusing on intensive care practice, this paper investigates what claims shared decision making may have to legitimacy in a paediatric intensive care setting. Drawing on key texts, I suggest these identify advantages to parents and clinicians but not to the child who is the subject of the decision. Without evidence that shared decision making increases the quality of the decision that is being made, it appears that a focus on the shared nature of a decision does not cohere with the principle that the best interests of the child should remain paramount. In the face of significant pressures toward the displacement of the child’s interests in a shared decision, advantages of a shared decision to decisional quality require elucidation. Although a number of arguments of this nature may have potential, should no such advantages be demonstrable we have cause to revise our commitment to either shared decision making or the paramountcy of the child in these circumstances. (shrink)

Where a decision has been made to stop futile treatment of critically ill patients on an intensive care unit – what is termed withdrawal of treatment in the UK – yet no doctor is available to perform the actions of withdrawal, nurses may be called upon to perform key tasks. In this paper I present two moral justifications for this activity by offering answers to two major questions. One is to ask if it can be in patients' best interests for (...) nurses to be the key actors in withdrawal of life‐sustaining treatment. The other is to ask if there is any reason that the nursing profession should not undertake such tasks if this is so. Both these questions require the resolution of weighty moral and philosophical issues. Thus, while offering a serious attempt to provide moral justifications for nurses undertaking withdrawal, this paper also invites debate over both the aim of task division between nurses and doctors, and how we might decide what is in the best interests of patients. (shrink)

The substituted judgement principle is often recommended as a means of promoting the self-determination of an incompetent individual when proxy decision makers are faced with having to make decisions about health care. This article represents a critical ethical analysis of this decision-making principle and describes practical impediments that serve to undermine its fundamental purpose. These impediments predominantly stem from the informality associated with the application of the substituted judgement principle. It is recommended that the principles upon which decisions are made (...) about health care for another person should be transparent to all those involved in the process. Furthermore, the substituted judgement principle requires greater rigour in its practical application than currently tends to be the case. It may be that this principle should be subsumed as a component of advance directives in order that it fulfils its aim of serving to respect the self-determination of incompetent individuals. (shrink)

I will consider how we can assess the interests of critically ill children who will survive only while aggressive medical support is continued. If aggressive medical support is withdrawn, the child will die shortly afterwards. This is important because when the courts are asked to decide treatments, the standard is that decisions should be made in the best interests of the child. My claim is that this is not a coherent way to consider how some children in this situation should (...) be treated. I will consider two separate aspects of this problem. First, I will argue that there is no objective best interests test and no immediate prospect that we will be able to develop one. Secondly, I will argue that best interests are not a coherent way to consider the interests of children who will die shortly after treatment is withdrawn. To reinforce this claim, I will describe an example of two children where acting in the child's best interests produces counter-intuitive conclusions. (shrink)

In an earlier paper I argued that we do not have an objective conception of best interests and that this is a particular problem because the courts describe that they use an ‘…objective approach or test. That test is the best interests of the patient’ when choosing for children. I further argued that there was no obvious way in which we could hope to develop an objective notion of best interests. As well as this, I argued that a best-interest-based approach (...) was a particular problem around the time of death of some children. A response from a legal perspective argued that, while there is not a clear conception of objective best interests, the courts have a well-described approach to finding a child's objective best interests. In this paper, I argue that without clear agreement on an objective conception of best interests, the courts are unable to locate an objective sense of best interests and that the solutions do not solve the problems that were identified in the initial paper ‘Death and best interests’. (shrink)

From a clinical ethics perspective, I explore several traditional arguments that deem deception as morally unacceptable. For example, it is often argued that deception robs people of their autonomy. Deception also unfairly manipulates others and is a breach of important trust-relations. In these kinds of cases, I argue that the same reasons commonly used against deception can provide strong reasons why deception can be extremely beneficial for patients who lack mental capacity. For example, deception can enhance, rather than impair, autonomy (...) in certain cases. I argue that deception ought to only be used after considering several key morally relevant factors and provide a practical and morally justifiable framework for exploring these issues. (shrink)

The past few years has seen a resurgence in the public interest in space flight and travel. Spurred mainly by the likes of technology billionaires like Elon Musk and Jeff Bezos, the topic poses both unique scientific as well as ethical challenges. This paper looks at the concept of generation ships, conceptual behemoth ships whose goal is to bring a group of human settlers to distant exoplanets. These ships are designed to host multiple generations of people who will be born, (...) live, and die on these ships long before it reaches its destination. This paper takes reproductive ethics as its lens to look at how genetic enhancement interventions can and should be used not only to ensure that future generations of offspring on the ships, and eventual exoplanet colonies, live a minimally good life but that their births are contingent on them living genuinely good and fulfilling lives. The paper makes the further claim that if such a thesis holds, it also does so for human enhancement on Earth. (shrink)