An Egalitarian Perspective on Information Sharing: The Example of Health Care Priorities.

In health care, the provision of pertinent information to patients is not just a moral imperative but also a legal obligation, often articulated through the lens of obtaining informed consent. Codes of medical ethics and many national laws mandate the disclosure of basic information about diagnosis, prognosis, and treatment alternatives. However, within publicly funded health care systems, other kinds of information might also be important to patients, such as insights into the health care priorities that underlie treatment offers made. While conventional perspectives do not take this as an obligatory part of the information to be shared with patients, perhaps through viewing it as clinically "non-actionable," we advocate for a paradigm shift. Our proposition diverges from the traditional emphasis on actionability. We contend that honoring patients as equal moral agents necessitates, among other principles, a commitment to honesty. Withholding specific categories of information pertinent to patients' comprehension of their situation is inherently incompatible with this principle. In this article, we advocate for a recalibration of the burden of proof. Rather than requiring special justifications for adding to the standard set of information items, we suggest that physicians should be able to justify excluding relevant facts about the patient's situation and the underlying considerations shaping health care professionals' choices. This perspective prioritizes transparency and empowers patients with a comprehensive understanding, aligning with the ethos of respect for the patient as person.

Responsibility for Funding Refractive Correction in Publicly Funded Health Care Systems: An Ethical Analysis.

Allocating on the basis of need is a distinguishing principle in publicly funded health care systems. Resources ought to be directed to patients, or the health program, where the need is considered greatest. In Sweden support of this principle can be found in health care legislation. Today however some domains of what appear to be health care needs are excluded from the responsibilities of the publicly funded health care system. Corrections of eye disorders known as refractive errors is one such domain. In this article the moral legitimacy of this exception is explored. Individuals with refractive errors need spectacles, contact lenses or refractive surgery to do all kinds of thing, including participating in everyday activities, managing certain jobs, and accomplishing various goals in life. The relief of correctable visual impairments fits well into the category of what we typically consider a health care need. The study of refractive errors does belong to the field of medical science, interventions to correct such errors can be performed by medical means, and the skills of registered health care professionals are required when it comes to correcting refractive error. As visual impairments caused by other conditions than refractive errors are treated and funded within the public health care system in Sweden this is an inconsistency that needs to be addressed.

Co-payment for Unfunded Additional Care in Publicly Funded Healthcare Systems: Ethical Issues.

The burdens of resource constraints in publicly funded healthcare systems urge decision makers in countries like Sweden, Norway and the UK to find new financial solutions. One proposal that has been put forward is co-payment-a financial model where some treatment or care is made available to patients who are willing and able to pay the costs that exceed the available alternatives fully covered by public means. Co-payment of this sort has been associated with various ethical concerns. These range from worries that it has a negative impact on patients' wellbeing and on health care institutions, to fears that co-payment is in conflict with core values of publicly funded health care systems. This article provides an overview of the main ethical issues associated with co-payment, and ethical arguments both in support of and against it will be presented and analyzed.

Temporising and respect for patient self-determination.

The principle of self-determination plays a crucial role in contemporary clinical ethics. Somewhat simplified, it states that it is ultimately the patient who should decide whether or not to accept suggested treatment or care. Although the principle is much discussed in the academic literature, one important aspect has been neglected, namely the fact that real-world decision making is temporally extended, in the sense that it generally takes some time from the point at which the physician (or other health care professional) determines that there is a decision to be made and that the patient is capable of making it, to the point at which the patient is actually asked for his or her view. This article asks under what circumstances, if any, temporising-waiting to pose a certain treatment question to a patient judged to have decision-making capacity-is compatible with the principle of self-determination.

The protection of unrepresented patients in emergency care research.

In emergency care research, it may be the case that neither informed consent nor surrogate consent is possible. In order to nonetheless allow for such research, codes and regulations of research ethics have increasingly incorporated provisions regarding this specific situation. The protection that those provisions offer need to be better understood. This article addresses in what ways they protect individuals, and especially the extent to which the suggested protection compensates for the loss of surrogate consent. The Declaration of Helsinki, the Additional Protocol to the Convention on Human Rights and Biomedicine, and the EU Clinical Trials Regulation serve as the main illustrations.

Surrogate consent to non-beneficial research: erring on the right side when substituted judgments may be inaccurate.

Part of the standard protection of decisionally incapacitated research subjects is a prohibition against enrolling them unless surrogate decision makers authorize it. A common view is that surrogates primarily ought to make their decisions based on what the decisionally incapacitated subject would have wanted regarding research participation. However, empirical studies indicate that surrogate predictions about such preferences are not very accurate. The focus of this article is the significance of surrogate accuracy in the context of research that is not expected to benefit the research subject. We identify three morally relevant asymmetries between being enrolled and not being enrolled in such non-beneficial research, and conclude that when there is a non-negligible probability that surrogates' predictions are wrong, it will generally be better to err on the side of not authorizing enrollment.

Involving children in non-therapeutic research: on the development argument.

Non-therapeutic research on children raises ethical concerns. Such research is not only conducted on individuals who are incapable of providing informed consent. It also typically involves some degree of risk or discomfort, without prospects of medically benefiting the participating children. Therefore, these children seem to be instrumentalized. Some ethicists, however, have tried to sidestep this problem by arguing that the children may indirectly benefit from participating in such research, in ways not related to the medical intervention as such. It has been argued, for example, that non-therapeutic pediatric research does not instrumentalize the children enrolled since it has the prospects of furthering their moral development. We argue that this argument is far too undeveloped to be taken seriously.

Empirical fallacies in the debate on substituted judgment.

According to the Substituted Judgment Standard a surrogate decision maker ought to make the decision that the incompetent patient would have made, had he or she been competent. This standard has received a fair amount of criticism, but the objections raised are often wide of the mark. In this article we discuss three objections based on empirical research, and explain why these do not give us reason to abandon the Substituted Judgment Standard.

Does peer benefit justify research on incompetent individuals? The same-population condition in codes of research ethics.

Research on incompetent humans raises ethical challenges, especially when there is no direct benefit to these research subjects. Contemporary codes of research ethics typically require that such research must specifically serve to benefit the population to which the research subjects belong. The article critically examines this "same-population condition", raising issues of both interpretation and moral justification. Of particular concern is the risk that the way in which the condition is articulated and rationalized in effect disguises or downplays the instrumentalization of incompetent individuals.

Having to focus on doing rather than being-nurse assistants' experience of palliative care in municipal residential care settings.

BACKGROUND: Palliative care should be provided, irrespective of setting to all patients facing a life-threatening illness and to their families. The situation and needs of older people differ from those of younger people since they often have several co-existing diseases and health complaints. This implies an extensive need for care and for longer periods of palliative care. The main providers of palliative care for older people are nurse assistants, who are also those with the shortest education. AIM: The aim of this study was to illuminate nurse assistants' experience of palliative care for older people in residential care. DESIGN: The study had an explorative, descriptive design. SETTINGS: Thirteen residential care units in three different districts in a large city in southern Sweden. PARTICIPANTS: Twenty-five nurse assistants selected to represent variations in age, gender workplace and work experience. METHODS: Data were collected from six focus-group interviews and subjected to content analysis to gain an understanding of the phenomenon. RESULTS: The nurse assistants described palliative care as a contrast to the everyday care they performed in that they had a legitimate possibility to provide the care needed and a clear assignment in relation to relatives. Palliative care also meant having to face death and dying while feeling simultaneous that it was unnatural to talk about death and having to deal with their own emotions. They emphasised that they were in need of support and experienced leadership as invisible and opaque, but gained strength from being recognized. CONCLUSION: In order to support nurse assistants in providing high quality end-of-life care, more focus is needed on the trajectory of older peoples' dying, on the importance of involving relatives throughout the period of care provision, and on support when encountering death and dying. There is also a need for engaged care leaders, both registered nurses and managers, to recognize the work of nurse assistants and to support care provision for older people within the framework of palliative care philosophy.

Counterfactual reasoning in surrogate decision making -- another look.

Incompetent patients need to have someone else make decisions on their behalf. According to the Substituted Judgment Standard the surrogate decision maker ought to make the decision that the patient would have made, had he or she been competent. Objections have been raised against this traditional construal of the standard on the grounds that it involves flawed counterfactual reasoning, and amendments have been suggested within the framework of possible worlds semantics. The paper shows that while this approach may circumvent the alleged problem, the way it has so far been elaborated reflects insufficient understanding of the moral underpinnings of the idea of substituted judgment. Proper recognition of these moral underpinnings has potentially far-reaching implications for our normative assumptions about accuracy and objectivity in surrogate decision making.

Turning failures into successes: a methodological shortcoming in empirical research on surrogate accuracy.

Decision making for incompetent patients is a much-discussed topic in bioethics. According to one influential decision making standard, the substituted judgment standard, a surrogate decision maker ought to make the decision that the incompetent patient would have made, had he or she been competent. Empirical research has been conducted in order to find out whether surrogate decision makers are sufficiently good at doing their job, as this is defined by the substituted judgment standard. This research investigates to what extent surrogates are able to predict what the patient would have preferred in the relevant circumstances. In this paper we address a methodological shortcoming evident in a significant number of studies. The mistake consists in categorizing responses that only express uncertainty as predictions that the patient would be positive to treatment, on the grounds that the clinical default is to provide treatment unless it is refused. We argue that this practice is based on confusion and that it risks damaging the research on surrogate accuracy.

"What the patient would have decided": a fundamental problem with the substituted judgment standard.

Decision making for incompetent patients is a much-discussed topic in bioethics. According to one influential decision making standard, the substituted judgment standard, the decision that ought to be made for the incompetent patient is the decision the patient would have made, had he or she been competent. Although the merits of this standard have been extensively debated, some important issues have not been sufficiently explored. One fundamental problem is that the substituted judgment standard, as commonly formulated, is indeterminate in content and thus offers the surrogate little or no guidance. What the standard does not specify is just how competent one should imagine the patient to be, and what else one ought to envision about the patient's hypothetical outlook and the circumstances surrounding his or her decision making. The article discusses this problem of underdetermined decision conditions.