Advance Directives

Is it possible to donate unpaired vital organs, foreseeing but not intending one's own death? We argue that this is indeed psychologically possible, and thus far agree with Charles Camosy and Joseph Vukov in their recent paper on 'double effect donation.' Where we disagree with these authors is that we see double effect donation not as a morally praiseworthy act akin to martyrdom but as a morally impermissible act that necessarily disrespects human bodily integrity. Respect for bodily integrity goes beyond (...) avoiding the aim to kill: not all side effects of deliberate bodily interventions can be outweighed by intended benefits for another even if the subject fully consents. It is not any necessary intention to kill or harm another or oneself that makes lethal donation/harvesting illicit but the more immediate intention to accept or perform surgery on an (innocent) person combined with the foresight of lethal harm and no health-related good for him or her. Double effect donation falls foul of the first condition of double effect reasoning in that the immediate act is wrong in itself. We argue further that the wider effects of such donation would be socially disastrous and corrupting of the medical profession: doctors should retain a sense of nonnegotiable respect for bodily integrity even when they intervene on willing subjects for the benefit of others. (shrink)

The use of machine learning, or “artificial intelligence” (AI) in medicine is widespread and growing. In this paper, I focus on a specific proposed clinical application of AI: using models to predict incapacitated patients’ treatment preferences. Drawing on results from machine learning, I argue this proposal faces a special moral problem. Machine learning researchers owe us assurance on this front before experimental research can proceed. In my conclusion I connect this concern to broader issues in AI safety.

A patient is diagnosed with the persistent vegetative state (PVS) when they show no evidence of the awareness of the self or the environment for an extended period of time. The chance of recovery of any mental function or the ability to interact in a meaningful way is low. Though rare, the condition, considering its nature as a state outwith the realm of the conscious, coupled with the trauma experienced by the patient's kin as well as health care staff confronted (...) with painful decisions regarding the patient's care, has attracted a considerable amount of discussion within the bioethics community. At present, there is a wealth of literature that discusses the relevant neurology, that elucidates the plethora of ethical challenges in understanding and dealing with the condition, and that analyses the real-world cases which have prominently featured in the mainstream media as a result of emotionally charged, divergent views concerning the provision of care to the patient. However, there is scarcely anything in the published scholarly literature that proposes concrete and practically actionable solutions to the now widely recognized moral conundrums. The present article describes a step in that direction. I start from the very foundations, laying out a sentientist approach which serves as the basis for the consequent moral decision-making, and then proceed to systematically identify and deconstruct the different cases of discord, using the aforementioned foundations as the basis for their resolution. A major intellectual contribution concerns the fluidity of the duty of care which I argue is demanded by the sentientist focus. The said duty is shown initially to have for its object the patient, which depending on the circumstances, can change to the patient's kin, or the health care staff themselves. In conclusion, the proposed framework represents the first comprehensive proposal regarding the decision-making processes involved in the deliberation on the provision of life sustaining treatment to a patient in a PVS. (shrink)

Default positions, predetermined starting points that aid in complex decision-making, are common in clinical medicine. In this article, we identify and critically examine common default positions in clinical ethics practice. Whether default positions ought to be held is an important normative question, but here we are primarily interested in the descriptive, rather than normative, properties of default positions. We argue that default positions in clinical ethics function to protect and promote important values in medicine—respect for persons, utility, and justice. Further, (...) default positions in clinical ethics may also guard against harm. Where default positions exist, there are epistemic burdens to overturn them. The person wishing to reject the default position, rather than the person endorsing it, bears this burden. The person who bears the burden of meeting the epistemic requirements must provide evidence proportional to the degree of harm the default position protects against. Default positions that protect against significant harm impose significant epistemic requirements to overturn. This asymmetry not only makes medical decision-making more economical but also serves to promote and protect certain values. The identification and analysis of common and recognizable default positions can help to identify other default positions and the conditions under which their associated epistemic requirements are met. The article concludes with considerations of potential problems with the use of default positions in clinical ethics. (shrink)

Goal: To assess public knowledge and attitudes towards the family’s role in deceased organ donation in Europe. -/- Methods: A systematic search was conducted in CINHAL, MEDLINE, PAIS Index, Scopus, PsycINFO, and Web of Science on December 15th, 2017. Eligibility criteria were socio-empirical studies conducted in Europe from 2008 to 2017 addressing either knowledge or attitudes by the public towards the consent system, including the involvement of the family in the decision-making process, for post-mortem organ retrieval. Screening and data collection (...) were performed by two or more independent reviewers for each record. -/- Results: Of the 1482 results, 467 studies were assessed in full-text form, and 33 were included in this synthesis. When the deceased has not expressed any preference, a majority of the public support the family's role as a surrogate decision-maker. When the deceased expressly consented, the respondents' answers depend on whether they see themselves as potential donors or as a deceased's next-of-kin. Answers also depend on the relationship between the deceased and the decision-maker(s) within the family, and on their ethnic or cultural background. -/- Conclusions: Public views on the authority of the family in organ donation decision-making require further research. A common conceptual framework and validated well-designed questionnaires are needed for future studies. The findings should be considered in the development of Government policy and guidance regarding the role of families in deceased organ donation. (shrink)

Advance directives are intended to extend patient autonomy by enabling patients to prospectively direct the care of their future incapacitated selves. There has been much discussion about issues such as whether the future incompetent self is identical to the agent who issues the advance directives or whether advance directives can legitimately secure patient autonomy. However, there is another important question to ask: to what extent and in what conditions is it ethically appropriate for one to limit the liberty or agency (...) of one’s future incompetent self by issuing an advance directive? -/- In this paper, I use a virtue-ethical approach to explore this question, focusing on the case of an advance directive for the future self with moderate dementia. First, I examine virtuous attitudes with regard to autonomy and argue that one can manifest vices or ethically undesirable character traits in trying to intervene in the future self’s life. In particular, I argue that this case can manifest vices such as disdainfulness, intellectual arrogance, and self-dictatorship, which is the vice of trying to control one’s life to an excessive degree, and that a self-dictator fails to give due moral consideration to the future self’s liberty or agency. I then introduce the Daoist idea of wu-wei, which recommends embracement of what happens in one’s life, as one of the possible remedies for the overemphasis on the value of autonomy and control. (shrink)

Thought experiments that concoct bizarre possible world modalities are standard fare in debates on personal identity. Appealing to intuitions raised by such evocations is often taken to settle differences between conflicting theoretical views that, albeit, have practical implications for ethical controversies of personal identity in health care. Employing thought experiments that way is inadequate, I argue, since personhood is intrinsically linked to constraining facts about the actual world. I defend a moderate modal skepticism according to which intuiting across conceptually incongruent (...) worlds constitutes ‘invalid intuitioninferences’—i.e., carrying over intuitions gathered from facts about possible worlds that are at odds with facts about the actual world, for the purpose of making claims about real-life persons and their identity, leads to conceptual incongruences. Such a methodological fallout precludes accurate, informative judgments about personal identity in the actual world, calling into question the adequacy of thought experimental considerations for potential real world applications in medical ethics. (shrink)

Summary Background Self-binding directives instruct clinicians to overrule treatment refusal during future severe episodes of illness. These directives are promoted as having potential to increase autonomy for individuals with severe episodic mental illness. Although lived experience is central to their creation, service users’ views on self-binding directives have not been investigated substantially. This study aimed to explore whether reasons for endorsement, ambivalence, or rejection given by service users with bipolar disorder can address concerns regarding self-binding directives, decision-making capacity, and human (...) rights. Methods This study used qualitative data from an internet-based survey distributed to the mailing list of the UK charity Bipolar UK, which contained multiple closed and open questions on advance decision-making in bipolar disorder. Quantitative analysis of a closed question about self-binding directives had already demonstrated endorsement amongst a very high proportion of participants with bipolar disorder who completed the survey. We conducted thematic analysis of responses from those participants who answered a subsequent open question about reasons for their view. Research was co-produced within a multi-disciplinary team, with clinical, legal, and ethical expertise, and lived experience of bipolar disorder. Ideas and methodologies associated with all these areas of expertise were used in the analysis of these reasons and to gain insight into the thoughts of individuals with bipolar disorder about self-binding directives and associated issues. Findings Between Oct 23 and Dec 5, 2017, 932 individuals with a self-reported clinical diagnosis of bipolar disorder completed the internet survey, with 565 (154 men; 400 women; 11 transgender or other) providing free text answers to the open question. A large majority of respondents endorsed self-binding directives, nearly all describing a determinate shift to types of distorted thinking and decision-making when unwell as their key justification. Responses indicating ambivalence were dominated by logistical concerns about the drafting and implementation of self-binding directives, while those who rejected self-binding directives also cited logistical concerns, validity of their thinking when unwell, and potential contravention of human rights. Interpretation This study is, to our knowledge, the first large study of reasons why mental health service users might endorse or reject the use of self-binding directives. The findings provide empirical support for introducing self-binding directives into mental health advance decision-making practice and policy and may help to address enduring ethical concerns surrounding possible implementation of the directive while a person retains decision-making capacity. The opinions expressed here in responses given by multiple service users with bipolar disorder challenge a prominent view within international disability rights debates that involuntary treatment and recognition of impaired mental capacity constitute inherent human rights violations. Funding The Wellcome Trust . (shrink)

Mackenzie Graham has made an important contribution to the literature on decisionmaking for patients with disorders of consciousness. He argues, and I agree, that decisions for unresponsive patients who are known to retain some degree of covert awareness ought to focus on current interests, since such patients likely retain the kinds of mental capacities that in ordinary life command our current respect and attention. If he is right, then it is not appropriate to make decisions for such patients by appealing (...) to the values they had in the past, either the values expressed in an advance directive or the values recalled by a surrogate. There are two things I wish to add to the discussion. My first point is somewhat critical, for although I agree with his general conclusion about how, ideally, such decisions should be approached, I remain skeptical about whether his conclusion offers decisionmakers real practical help. The problem with these cases is that the evidence we have about the nature of the patient’s current interests is minimal or nonexistent. However—and this is important—Graham’s conclusion will be extremely relevant if in the future, our ability to communicate with such patients improves, as I hope it will. This leads to my second point. Graham’s conclusion illustrates a more general problem with our standard framework for decisionmaking for previously competent patients, a problem that has not been adequately recognized. So, in what follows, I explain the problem I see and offer some brief thoughts about solutions. (shrink)

Several European countries are approving legislative reforms moving to a presumed consent system in order to increase organ donation rates. Nevertheless, irrespective of the consent system in force, family's decisional capacity probably causes a greater impact on such rates. In this contribution we have developed a systematic methodology in order to analyse and compare European organ procurement laws, and we clarify the weight given by each European law to relatives' decisional capacity over individual's preferences (expressed or not while alive) regarding (...) the destination of his or her organs after death. In this sense, the results constitute the first comprehensive and comparative legislative mapping on European transplantation laws. (shrink)

In this commentary, I critique three aspects of Emily Walsh's proposal to reduce the moral and legal weight of advance directives: (1) the ambiguity of its initial thesis, (2) its views about the ethics and legality of clinical practice, and (3) its interpretation and application of Ronald Dworkin’s account of advance directives and L.A. Paul's view on transformative experience. I also consider what Walsh’s proposal would mean for people facing the prospect of dementia. I conclude that our reasons to honor (...) many advance directives survive the move to a transformative experience framework. (shrink)

We aim to establish the following claim: other factors held constant, the relative weights of the epistemic burdens of competing treatment options serve to determine the options that patient surrogates pursue. Simply put, surrogates confront an incentive, ceteris paribus, to pursue treatment options with respect to which their knowledge is most adequate to the requirements of the case. Regardless of what the patient would choose, options that require more knowledge than the surrogate possesses (or is likely to learn) will either (...) be neglected altogether or deeply discounted in the surrogate’s incentive structure. We establish this claim by arguing that the relation between epistemic burdens and incentives in decision-making is a general feature of surrogate decision-making. After establishing the claim, we draw out some of the implications for surrogate decision-making in medicine and offer philosophical and psychological explanations of the phenomenon. (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)

This paper takes a novel approach to the active bioethical debate over whether advance medical directives have moral authority in dementia cases. Many have assumed that advance directives would lack moral authority if dementia truly produced a complete discontinuity in personal identity, such that the predementia individual is a separate individual from the postdementia individual. I argue that even if dementia were to undermine personal identity, the continuity of the body and the predementia individual’s rights over that body can support (...) the moral authority of advance directives. I propose that the predementia individual retains posthumous rights over her body that she acquired through historical embodiment in that body, and further argue that claims grounded in historical embodiment can sometimes override or exclude moral claims grounded in current embodiment. I close by considering how advance directives grounded in historical embodiment might be employed in practice and what they would and would not justify. (shrink)

In this bioethical poem, the narrator reflects on the experience of their father's degenerative illness, and decisions that must be made about whether to continue life support technologies such as ventilation and nutrition/hydration. What is it that is owed to family and patient at the end of life? What must no one who loves anyone ever do to the one they love?

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)

Ever since the debate concerning euthanasia was ignited, the distinction between active and passive euthanasia – or, letting die and killing – has been marked as one of its key issues. In this paper I will argue that a) the borderline between act and omission is an altogether blurry one, and it gets even vaguer when it comes to euthanasia, b) there is no morally significant difference between active and passive euthanasia, and c) if there is any, it seems to (...) favor active instead of passive euthanasia. Therefore, while the distinction between active and passive euthanasia might be meaningful in terms of description, if it is considered to be endowed with moral weight and used on purpose of justifying one type of euthanasia instead of the other, it becomes morally problematic and misleading. (shrink)

I consider the current best interests of patients who were once thought to be either completely unaware (to be in PVS) or only minimally aware (MCS), but who, because of advanced fMRI studies, we now suspect have much more “going on” inside their minds, despite no ability to communicate with the world. My goal in this chapter is twofold: (1) to set out and defend a framework that I think should always guide thinking about the best interests of highly cognitively (...) compromised patients, and then (2) to defend a particular conclusion that applies to this specific patient population. The framework requires us to ask two questions: Is the individual suffering? Is the individual gaining any benefit from life? There must be benefit of some sort for life to be worth preserving, and the benefit must outweigh any suffering (if there is suffering present). I then argue it would be best overall to allow these patients to die. Either these patients are not really very aware at all, in which case they are most likely not suffering, but not benefiting from life either, or they are mentally intact enough to make benefit a theoretical possibility, but in fact they are not benefiting because they cannot communicate with anyone. Such patients would most likely suffer. As there is no way currently to address their suffering, we should allow them to die. No matter the truth about their cognitive lives, death would either be a neutral event, or a blessing. (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)

Although advance directives are widely believed to be a key way to safeguard the autonomy of incompetent medical patients, significant questions exist about their moral authority. The main philosophical concern involves cases in which an incompetent patient no longer possesses the desires on which her advance directive was based. The question is, does that entail that prior expressions of medical choices are no longer morally binding? I believe that the answer is “yes.” I argue that a patient’s autonomy is not (...) respected by honoring the desires she used to have but no longer does. I also consider and reject the view that honoring an advance directive that reflects the patient’s previous values must be in that patient’s best interests. If that is correct, then advance directives in the kind of case at issue are not morally binding. (shrink)

For people with Bipolar Affective Disorder, a self-binding (advance) directive (SBD), by which they commit themselves to treatment during future episodes of mania, even if unwilling, can seem the most rational way to deal with an imperfect predicament. Knowing that mania will almost certainly cause enormous damage to themselves, their preferred solution may well be to allow trusted others to enforce treatment and constraint, traumatic though this may be. No adequate provision exists for drafting a truly effective SBD and efforts (...) to establish such provision are hampered by very valid, but also paralysing ethical, clinical and legal concerns. Effectively, the autonomy and rights of people with bipolar are being 'protected' through being denied an opportunity to protect themselves. From a standpoint firmly rooted in the clinical context and experience of mania, this article argues that an SBD, based on a patient-centred evaluation of capacity to make treatment decisions (DMC-T) and grounded within the clinician-patient relationship, could represent a legitimate and ethically coherent form of self-determination. After setting out background information on fluctuating capacity, mania and advance directives, this article proposes a framework for constructing such an SBD, and considers common objections, possible solutions and suggestions for future research. (shrink)

The connections between medicine and well-being are myriad. This paper focuses on the place of well-being in clinical medicine. It is here that different views of well-being, and their connection to concepts like “autonomy” and “authenticity”, both illuminate and are illuminated by looking closely at the kinds of interactions that routinely take place between clinicians, patients, and family members. -/- In the first part of the paper, I explore the place of well-being in a paradigmatic clinical encounter, one where a (...) competent patient interacts with a clinician. The main question here is how, or even whether, the pursuit of patient well-being – however we construe it – figures into a paradigmatic clinical encounter. In the second part of the paper, I consider what I will call a marginal clinical encounter – one where the patient is, as Agnieska Jaworska (1999) puts it, at the “margins of agency” – to theorize about the nature of well-being and to show how different theories of well-being can have dramatic consequences for clinical decision-making. (shrink)

Philosophers concerned with what would be good for a person sometimes consider a person’s past desires. Indeed, some theorists have argued by appeal to past desires that it is in the best interests of certain dementia patients to die. I reject this conclusion. I consider three different ways one might appeal to a person’s past desires in arguing for conclusions about the good of such patients, finding flaws with each. Of the views I reject, the most interesting one is the (...) view that prudential value is, at least partly, concerned with the shape of a life as a whole. (shrink)

The paper investigates whether it is plausible to hold the late stage demented criminally responsible for past actions. The concern is based on the fact that policy makers in the United States and in Britain are starting to wonder what to do with prison inmates in the later stages of dementia who do not remember their crimes anymore. The problem has to be expected to become more urgent as the population ages and the number of dementia patients increases. This paper (...) argues that the late-stage demented should not be punished for past crimes. Applicable theories of punishment, especially theories with an appropriate expressivist, or communicative element, fail to justify the imprisonment of the late-stage demented. Further imprisonment would require a capacity for comprehension on the part of the punished, and, under certain narrowly specified conditions, even a capacity to be at least in principle capable of recalling the crime again. (shrink)

This paper discusses (in German) an idea enshrined in the recent (2012) revision of the German transplantation law. The law allows family members to make claims about what the deceased would have wanted to happen to his/her organs/tissue even though he/she never has voiced any relevant opinions. I argue that this is illegitimate.

Advance directives typically have two defects. First, most advance directives fail to enable people to effectively avoid unwanted medical intervention. Second, most of them have the potential of ending your life in ways you never intended, years before you had to die.