Jennifer Hawkins

We advocate for a change in the way individuals with cognitive impairment are enrolled in minimal risk clinical research. We do so in the hope that such a change will lead to more cognitively impaired individuals being enrolled in research. Our proposal applies only to cases where would-be participants retain some interest in decision-making as well as the ability to express a decision. In these cases, we argue that the common practice whereby researchers either obtain consent from the individual or consent from a surrogate and assent from the individual, is ethically unnecessary. Instead, a process of facilitated decision-making based on SDM (supported decision-making) should be employed. Although it is possible that this process of facilitation will enable some individuals to make a capacitated choice who would not otherwise have done so, this should not be a requirement of getting to choose. In those cases where a would-be participant, despite support, fails to make a capacitated choice, the individual should still have the final say about participation. In this respect, our proposal deviates from standard practice. However, we argue that our proposal offers participants as much ethical protection as the more common procedures involving surrogates.

Existence internalism claims that facts about human psychological responsiveness constrain the metaphysics of value in particular ways. Chapter 5 examines whether some form of existence internalism holds for prudential value (as opposed to moral or aesthetic value). It emphasizes the importance of a modal distinction that has been traditionally overlooked. Some facts about personal good are _facts about realized good_. For example, right now it may be true that X is good for me. Other facts about goodness are facts about what would be good for me in certain possible futures. These are _facts about merely possible good_. Philosophers should be internalists about realized good. The chapter defends a _qualified_ version of the idea that a necessary constraint on something’s being good for a person at a time is that the thing in question elicits some kind of positive psychological response from the person at that time. However, philosophers should be motivational externalists about merely possible good. Facts about the superior future goodness of an option may ground reasons now to choose it. But we should not expect individuals to always recognize such facts, and so there is no reason to think such facts are always motivating.

Chapter 12 explores radical personal change and its relationship to well-being, welfare, or prudential value. Many theorists of welfare are committed to what is here called the future-based reasons view (FBR), which holds (1) that the best prudential choice in a situation is determined by which possible future has the greatest net welfare value for the subject and (2) what determines facts about future welfare are facts about the subject and the world at that future time. Although some cases of radical change are intuitively prudentially good, many cases of really radical change are not. Yet FBR has trouble explaining this. Many people instinctively reach for the notion of identity to solve this problem—arguing that really radical change cannot be good because it alters who someone is. Yet, as the chapter argues, there are reasons to doubt that appeals to identity are appropriate. The chapter ends with the suggestion that prudential facts may explain why and when retaining identity matters, rather than the other way around, and points to a possible way forward for a theorist of welfare committed to FBR.

Most philosophers assume that more matters for well-being than simply mental states. However, there is an important distinction that is routinely overlooked. When it is said that more matters than mental states, this could mean either that certain mind-independent events countwhen it comes to assessing the prudential value of a life (the mind-independent events thesis or MIE), or it could mean that it is prudentially important for individuals to have the right kind of epistemic relation to life events (the positive value of knowledge thesis or PVK). This chapter aims to convince theorists of the importance of the distinction between MIE and PVK, or more precisely, the importance of distinguishing questions about which non-mental objects (or events or facts) have intrinsic welfare value (if any do) and questions about which epistemic relations (knowledge, justified true belief, true belief) have intrinsic welfare value (if any do). This chapter also raises serious doubts about the way in which contemporary desire theories handle the extra-mental components of welfare, and offers some tentative answers to the question: what should a theorist of welfare say about these matters?

This chapter examines the issue of autonomous choice as seen in the film _Million Dollar Baby_ (2004). The film tells the story of Maggie (Hilary Swank), a 31-year-old woman who becomes a boxer with the help of her trainer Frankie (Clint Eastwood). Maggie moves successfully into the world of female boxing but later breaks her neck and becomes paralyzed after being hit by an opponent. She tries to kill herself, and when this fails, she asks Frankie to kill her, which he eventually agrees to do. The film aims to show that sometimes death is the best choice, and that individuals should be allowed to make that choice when they want. The chapter argues that Frankie is a hero because he is the only one who respects her choice to die. It then discusses the importance of autonomous choices in medical ethics, both because people typically want to make choices for themselves and because autonomous choices are more likely to be right.

Commentators often claim that medical research subjects are coerced into participating in clinical studies. In recent years, such claims have appeared especially frequently in ethical discussions of research in developing countries. Medical research ethics is more important than ever as we move into the 21st century because worldwide the pharmaceutical industry has grown so much and shows no sign of slowing its growth. This means that more people are involved in medical research today than ever before, and in the future even more will be involved. However, despite the pressing need for reflection on research ethics, it is important to carefully identify the concerns we have about research. Otherwise we run the risk that the moral language we use, and which we hear other people use, may do our moral thinking for us. We argue that many recent claims about the occurrence of coercion in medical research are misguided and misuse the word "coercion." We try to identify the real problems, and urge people to attend carefully to the implications of their descriptions of moral problems in research.

The dominant approach to assessing decision-making capacity in medicine focuses on determining the extent to which individuals possess certain core cognitive abilities. Critics have argued that this model delivers the wrong verdict in certain cases where patient values that are the product of mental disorder or disordered affective states undermine decision-making without undermining cognition. I argue for a re-conceptualization of what it is to possess the capacity to make medical treatment decisions. It is, I argue, the ability to track one’s own personal interests at least as well as most people can. Using this idea, I demonstrate that it is possible to craft a solution for the problem cases—one that neither alters existing criteria in dangerous ways (e.g. does not open the door to various kinds of abuse) nor violates the spirit of widely accepted ethical constraints on decision-making assessment.

What is the best way to account for the badness of pain and what sort of theory of welfare is best suited to accommodate this view? I argue that unpleasant sensory experiences are prudentially bad in the absence of contrary attitudes, but good when the object of positive attitudes. Pain is bad unless it is liked, enjoyed, valued etc. Interestingly, this view is incompatible with either pure objectivist or pure subjectivist understandings of welfare. However, there is a kind of welfare theory that can incorporate this view of the badness of pain and which is very, very close to being a form of subjectivism. Moreover, this hybrid account of welfare is entirely compatible with the deep motivations of subjectivism. I therefore argue that those who lean towards welfare subjectivism should adopt this account of pain, and that we should revise our understanding of subjectivism to count such theories as subjective.

The dominant approach to assessing decision-making capacity in medicine focuses on determining the extent to which individuals possess certain core cognitive abilities. Critics have argued that this model delivers the wrong verdict in certain cases where patient values that are the product of mental disorder or disordered affective states undermine decision-making without undermining cognition. I argue for a re-conceptualization of what it is to possess the capacity to make medical treatment decisions. It is, I argue, the ability to track one’s own personal interests at least as well as most people can. Using this idea, I demonstrate that it is possible to craft a solution for the problem cases—one that neither alters existing criteria in dangerous ways (e.g. does not open the door to various kinds of abuse) nor violates the spirit of widely accepted ethical constraints on decision-making assessment.

Most adult persons with anorexia satisfy the existing criteria widely used to assess decision-making capacity, meaning that incapacity typically cannot be used to justify coercive intervention. After rejecting two other approaches to justification, Professor Radden concludes that it is most likely not possible to justify coercive medical intervention for persons with anorexia in liberal terms, though she leaves it open whether some other framework might succeed. I shall assume here that the standard approach to assessing decisionmaking capacity is adequate.1 The question then is whether we can justify—within a liberal framework—coercive intervention with the decision of a competent...

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.

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.

This chapter explores radical personal change and its relationship to well-being, welfare, or prudential value. Many theorists of welfare are committed to what is here called the future-based reasons view (FBR), which holds (1) that the best prudential choice in a situation is determined by which possible future has the greatest net welfare value for the subject and (2) what determines facts about future welfare are facts about the subject and the world at that future time. Although some cases of radical change are intuitively prudentially good, many cases of really radical change are not. Yet FBR has trouble explaining this. Many people instinctively reach for the notion of identity to solve this problem—arguing that really radical change cannot be good because it alters who someone is. Yet, as the chapter argues, there are reasons to doubt that appeals to identity are appropriate. The chapter ends with the suggestion that prudential facts may explain why and when retaining identity matters, rather than the other way around, and points to a possible way forward for a theorist of welfare committed to FBR.

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

Existence internalism claims that facts about human psychological responsiveness constrain the metaphysics of value in particular ways. Chapter 5 examines whether some form of existence internalism holds for prudential value. It emphasizes the importance of a modal distinction that has been traditionally overlooked. Some facts about personal good are facts about realized good. For example, right now it may be true that X is good for me. Other facts about goodness are facts about what would be good for me in certain possible futures. These are facts about merely possible good. Philosophers should be internalists about realized good. The chapter defends a qualified version of the idea that a necessary constraint on something’s being good for a person at a time is that the thing in question elicits some kind of positive psychological response from the person at that time. However, philosophers should be motivational externalists about merely possible good. Facts about the superior future goodness of an option may ground reasons now to choose it. But we should not expect individuals to always recognize such facts, and so there is no reason to think such facts are always motivating.

In her impressive book, looking at the philosophy and science of well-being, Anna Alexandrova argues for the strong claim that we possess no stable, unified concept of well-being. Instead, she thinks the word “well-being” only comes to have a specific meaning in particular contexts, and has a quite different meaning in different contexts. I take issue with (1) her claim that we do not possess a unified, all-things-considered concept of well-being as well as with (2) her failure to consider why we might want a unified concept. I grant that Alexandrova is probably correct that the word “well-being” is used differently in different contexts. But this only shows that one word can come to be used to express different concepts. Moreover, noting that several concepts exist that are picked out by “well-being” doesn’t establish that we lack altogether a notion of all-things-considered well-being. I believe we have such a concept, even though it is not always the concept in play. Moreover, I think we need such a concept. The conceptual muddles Alexandrova highlights—muddles that result from a single word being used to express multiple ideas—remind us how important it is to be able to distinguish different concepts from one another, as well as how important it is to periodically remind ourselves of how various forms of specialist dialogue relate back to the broader, more general notion of “well-being.”

In this article I explore various facets of Nozick’s famous thought experiment involving the experience machine. Nozick’s original target is hedonism—the view that the only intrinsic prudential value is pleasure. But the argument, if successful, undermines any experientialist theory, i.e. any theory that limits intrinsic prudential value to mental states. I first highlight problems arising from the way Nozick sets up the thought experiment. He asks us to imagine choosing whether or not to enter the machine and uses our choice (or rather the choice he assumes most people will have) as evidence against experientialist theories. But for this strategy to succeed it must be possible to distinguish between self-interested and non-self-interested reasons for declining to enter the machine, and there is no obvious way to do this without begging the question against the hedonist. In successive sections I then (a) consider a common misconception of Nozick’s conclusion (that he thinks machine life is the worst life), (b) consider different intuitions about what is important to well-being but missing from machine life, and finally (c) explain what “the experience requirement” is, and describe its relationship to debates about experientialist theories.

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.

What is the relationship between negative experience, artistic production, and prudential value? If it were true that (for some people) artistic creativity must be purchased at the price of negative experience (to be clear: currently no one knows whether this is true), what should we conclude about the value of such experiences? Are they worth it for the sake of art? The first part of this essay considers general questions about how to establish the positive extrinsic value of something intrinsically negative. The second part emphasizes the importance of various distinctions within the realm of the negative. We must distinguish between adversity (which is non-mental) and negative mental states, and between negative thoughts (or attitudes) and negative affect. Within the realm of negative affect, we must distinguish between negative emotions and moods, on the one hand, and negative affective perspectives on the other, and then between mildly negative affective perspectives and severely negative ones (for which I reserve the term ‘suffering’). These distinctions matter greatly, since different types of negative experience have very different degrees of prudential disvalue. Although many types of negative experience may be “worth it”—because their positive extrinsic value outweighs their negative value—this is rarely true of severe suffering.

Most philosophers these days assume that more matters for well-being than simply mental states. However, there is an important distinction that is routinely overlooked. When it is said that more matters than mental states, this could mean either that certain mind-independent events count when it comes to assessing the prudential value of a life (the mind-independent events thesis or MIE), or it could mean that it is prudentially important for individuals to have the right kind of epistemic relation to life events (the positive value of knowledge thesis or PVK). This chapter first aims to convince theorists of the importance of the distinction between MIE and PVK, or, more precisely, the importance of distinguishing questions about which non-mental objects (or events or facts) have intrinsic welfare value (if any do) and questions about which epistemic relations (knowledge, justified true belief, true belief) have intrinsic welfare value (if any do). This chapter also raises serious doubts about the way in which contemporary desire theories handle the extra-mental components of welfare, and offers some tentative answers to the question: what should a theorist of welfare say about these matters?

Commentators often claim that medical research subjects are coerced into participating in clinical studies. In recent years, such claims have appeared especially frequently in ethical discussions of research in developing countries. Medical research ethics is more important than ever as we move into the 21st century because worldwide the pharmaceutical industry has grown so much and shows no sign of slowing its growth. This means that more people are involved in medical research today than ever before, and in the future even more will be involved. However, despite the pressing need for reflection on research ethics, it is important to carefully identify the concerns we have about research. Otherwise we run the risk that the moral language we use, and which we hear other people use, may do our moral thinking for us. We argue that many recent claims about the occurrence of coercion in medical research are misguided and misuse the word "coercion." We try to identify the real problems, and urge people to attend carefully to the implications of their descriptions of moral problems in research

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