A growing number of studies show that a significant proportion of patients, who meet the clinical criteria for the diagnosis of the vegetative state (VS), demonstrate evidence of covert awareness through successful performance of neuroimaging tasks. Despite these important advances, the day-to-day life experiences of any such patient remain unknown. This presents a major challenge for optimizing the patient’s standard of care and quality of life (QoL). We describe a patient who, following emergence from a state of complete behavioral unresponsiveness and a clinical diagnosis of VS, reported rich memories of his experience during this time. This case demonstrates the potential for a sophisticated mental life enabled by preserved memory in a proportion of patients who, similarly, are thought to be unconscious. Therefore, it presents an important opportunity to examine the implications for patient QoL and standard of care, both during the period of presumed unconsciousness and after recovery.

The recent increased prevalence of diseases related to unhealthy lifestyles raises difficulties for healthcare insurance systems traditionally based on the principles of risk-management, solidarity, and selective altruism: since these diseases are, to some extent, predictable and avoidable, patients seem to bear some responsibility for their condition and may not deserve full access to social medical services. Here, we investigate with objective criteria to what extent it is warranted to hold patients responsible for their illness and to sanction them accordingly. We ground our analysis on a series of minimal conditions for ‘practical’ and for ‘moral’ responsibility attribution. By applying these criteria consistently, we highlight that individual responsibility applies to risk-taking life choices rather than stigmatized sickness. We explain that responsibility is a matter of degree, that it varies across life-history, and can be affected by factors beyond the patients’ grasp. We point out that scientific knowledge about the effect of these factors generates responsibilities for other parties such as public health agencies and private industry. The upshot of our analysis is that health policies targeting the ‘liable’ undeserving sick are mostly unwarranted, and tend to increase unequal treatment of already vulnerable groups: the unlucky sick.

When talking about decisionmaking for children with a life-threatening condition, the death of children with brain tumors deserves special attention. The last days of the lives of these children can be particularly harsh for bystanders, and raise questions about the suffering of these children themselves. In the Netherlands, these children are part of the group for whom a wide range of end-of-life decisions are discussed, and questions raised. What does the end-of-life for these children look like, and what motivates physicians and parents to make decisions that may affect the life and death of these children? This article highlights the story of the parents of the sisters Roos and Noor. When both their daughters were diagnosed with a hereditary brain tumor, they had to make similar decisions twice. Their story sheds light on the suffering of children in the terminal phase, and how this suffering may motivate parents and physicians to make decisions that influence the end of life of these children’s lives.

We argue that complete knowledge about suffering in the terminal phase of children with brain tumors is impossible. However, by collecting experiences like those of Roos and Noor, we can move toward an experienced-based understanding and better guide parents and physicians through these hardest of decisions.

Marije Brouwer et al. contend that collecting treatment experiences of newborns with life-threatening conditions can support both caregivers and parents in making difficult end-of-life decisions. They illustrate the importance of that understanding by narrating the heartbreaking story of the sisters Roos and Noor, two newborns in the last stage of their lives.1

Christine Clavien and Samia Hurst1 (henceforth C-H) make at least three valuable contributions to the literature on responsibility and healthcare. They offer an admirably clear and workable set of criteria for determining a patient's degree of responsibility for her health condition; they deploy those criteria to cast doubt on the view that patients with lifestyle-related conditions are typically significantly responsible for their conditions; and they outline several practical difficulties that would be raised by any attempt to introduce responsibility-sensitive healthcare funding. I am sympathetic to the general thrust of their argument, share—at least tentatively—their policy conclusions, and was persuaded by much of the detail of their argument. However, I do have three critical comments.

Patients with disorders of consciousness after severe brain injury need surrogate decision makers to guide treatment decisions on their behalf. Formal guidelines for surrogate decisionmaking generally instruct decision makers to first appeal to a patient’s written advance directive, followed by making a substituted judgment of what the patient would have chosen, and lastly, to make decisions according to what seems to be in the patient’s best medical interests. Substituted judgment is preferable because it is taken to preserve patient autonomy, by using a patient’s past wishes and values to reconstruct what they would have chosen for themselves. In this paper, the author argues that for a certain population of patients, the standard interpretation of substituted judgment cannot ensure the preservation of patient autonomy. Patients with “covert awareness” may continue to have values and an authentic sense of self, which may differ from their past values and wishes. Accordingly, surrogate decision makers should make decisions based on how the patient is likely to experience their condition in the present, rather than their past wishes and values.

Human and animal research both operate within established standards. In the United States, criticism of the human research environment and recorded abuses of human research subjects served as the impetus for the establishment of the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, and the resulting Belmont Report. The Belmont Report established key ethical principles to which human research should adhere: respect for autonomy, obligations to beneficence and justice, and special protections for vulnerable individuals and populations. While current guidelines appropriately aim to protect the individual interests of human participants in research, no similar, comprehensive, and principled effort has addressed the use of (nonhuman) animals in research. Although published policies regarding animal research provide relevant regulatory guidance, the lack of a fundamental effort to explore the ethical issues and principles that should guide decisions about the potential use of animals in research has led to unclear and disparate policies. Here, we explore how the ethical principles outlined in the Belmont Report could be applied consistently to animals. We describe how concepts such as respect for autonomy and obligations to beneficence and justice could be applied to animals, as well as how animals are entitled to special protections as a result of their vulnerability.

This paper begins with a simple illustration of the choice between individual and population strategies in population health policy. It describes the traditional approach on which the choice is to be made on the relative merits of the two strategies in each case. It continues by identifying two factors—our knowledge of the consequences of the epidemiological transition and the prevalence of responsibility-sensitive theories of distributive justice—that may distort our moral intuitions when we deliberate about the choice of appropriate risk-management strategies in population health. It argues that the confluence of these two factors may lead us to place too much emphasis on personal responsibility in health policy.

Since the advent of neuroimaging technologies, their limits and possibilities have captivated scientists and philosophers. Thus far, the debate has largely concerned technical limits of our capacity to “read minds.” This paper extends the discussion concerning the limitations of neuroimaging to issues that are not dependent on technical issues or on our understanding of the complexity of brain activities. The author argues that there is a serious chance that brain scanning cannot replace usual intentional assertions, and that neuroimaging has principled limits. The information that people usually receive by neuroimaging is different in kind from the information they hear from what others tell them. To assert something is to act in a certain way, and scanners do not usually scan actions, but brain activities and the neural correlates of actions. Although it is possible to scan “mental assertions,” our usual assertions are not accompanied by separate “mental assertions.”