Background Patient education and dialogue are important when choosing a future treatment strategy for patients with chronic kidney disease. To support patients in their decision-making process, it is critical to provide information in a way that patients can understand. This study was conducted to understand how nephrologists view the goals of information sharing, the challenges involved, and the strategies used as part of treatment planning. Methods This study had a qualitative design using semi-structured interviews with 14 practicing nephrologists working in different hospitals in Sweden and with experience in providing information to patients approaching the need for dialysis. The interviews were conducted in 2022. The data were analyzed using qualitative content analysis. Results The results are presented thematically under the headings Objectives, Content, Challenges, and Strategies. Participants tried to find common ground with patients, in terms of shared knowledge, shared views on the appropriate decision-making process, and ultimately also agreement on which treatment option was best. There was a tension between allowing patients to make their own decisions and guiding patients to make decisions with the best outcomes as judged by the nephrologist. Achieving common ground was not always possible, both because of factors related to the patient’s preferences or limited capacity, and because of boundaries set by the physician to protect the patient from unwarranted or harmful information. Dealing with competing sources of information was seen as challenging. The nephrologists felt a professional responsibility for their treatment recommendations, combined with uncertainty about which patient would benefit from dialysis and when to start. Conclusions Planning future treatment for patients with chronic kidney disease involves a complex information process that leaves room for both paternalism and respect for autonomy. Nephrologists face many competing challenges when discussing treatment options with patients. These challenges should be taken into account in the development of support for nephrologists in the area of information sharing.

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.

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.

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.

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.

Introduction: The transgender population is a marginalized group in society and research suggests that they experience significant barriers when accessing health care. However, little is known about transgender and gender-diverse people and their experiences of encounters with healthcare professionals in Sweden. Aim: To explore transgender and gender-diverse people's experiences of accessing health care in Sweden. Method: Semi-structured interviews with 12 self-identified transgender or gender-diverse individuals were analyzed in a latent thematic analysis. Results: Participants experienced difficulties in having their gender identity acknowledged in encounters with healthcare staff. Most healthcare professionals were believed to lack knowledge about transgender people, and participants felt they needed to take a lot of responsibility themselves to ensure they received adequate care. Due to negative experiences, or fear of them, some participants delayed seeking health care or they chose to withhold their transgender identity during healthcare consultations. Discussion: Participants' experiences suggest that healthcare professionals in Sweden may be insufficiently equipped to provide competent and gender affirming care for transgender individuals. There appears to be an urgent need for interventions specifically designed to improve the quality of health care for these individuals. Further research is needed to determine what specific interventions would be most effective, and to elucidate the specific needs of differing groups within the transgender community to promote optimal care for each person.

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.

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.

At the end of life, when cure or meaningful prolongation of life is no longer available, relief of suffering is the overriding goal. In certain circumstances standard treatments may fall short of this goal, and palliative sedation (PS) to unconsciousness can be applied as a ultimum refugium.We cared for a 4-year old boy with a brain-stem tumor. In spite of all curative treatment efforts the tumor slowly but steadily progressed. All tumor-directed therapy was eventually abandoned, and together with the family efforts were focused on comfort. The child lost his ability to speak and communication became very difficult, he had difficulties swallowing, got a noisy breathing and was believed to have pain. The child was admitted for titration of pain medication and assessment of any breathing problems. In the course of a few days his condition deteriorated with noisier breathing and signs of continuing pain. The child seemed distressed and anxious, but the degree of symptoms was very difficult to assess with certainty. PS to unconsciousness is begun a week after admission, and continues for 2 weeks before he dies.The literature concerning PS for children is very sparse, and we want to explore the scope of indication and implementation, from an ethical point of view, for this small but vulnerable population. In what regard, and to which degree, does it matter that the child is not decision competent? Which symptoms, and how severe need they be, to allow PS? For how long can it be given? Can hydration and nutrition be foregone? How stringent need the indication be – or on which side would one prefer to err – in giving or withholding PS? How should the patient be monitored during PS, and why? (Less)

Etikprovningslagen bor skarpas pa en rad punkter och det rattsliga ansvaret utstrackas fran forskningshuvudman till att aven innefatta forskningsledaren, skriver docenter, professorer med flera i en slutreplik.

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.

General rights Unless other specific re-use rights are stated the following general rights apply: Copyright and moral rights for the publications made accessible in the public portal are retained by the authors and/or other copyright owners and it is a condition of accessing publications that users recognise and abide by the legal requirements associated with these rights. • Users may download and print one copy of any publication from the public portal for the purpose of private study or research. • You may not further distribute the material or use it for any profit-making activity or commercial gain • You may freely distribute the URL identifying the publication in the public portal

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.

General rights Unless other specific re-use rights are stated the following general rights apply: Copyright and moral rights for the publications made accessible in the public portal are retained by the authors and/or other copyright owners and it is a condition of accessing publications that users recognise and abide by the legal requirements associated with these rights. • Users may download and print one copy of any publication from the public portal for the purpose of private study or research. • You may not further distribute the material or use it for any profit-making activity or commercial gain • You may freely distribute the URL identifying the publication in the public portal