Niklas Juth

European Association for Palliative Care (EAPC) framework for palliative sedation: an ethical discussion

BackgroundThe aim of this paper is to critically discuss some of the ethically controversial issues regarding continuous deep palliative sedation at the end of life that are addressed in the EAPC recommended framework for the use of sedation in palliative care.DiscussionWe argue that the EAPC framework would have benefited from taking a clearer stand on the ethically controversial issues regarding intolerable suffering and refractory symptoms and regarding the relation between continuous deep palliative sedation at the end of life and euthanasia. It is unclear what constitutes refractory symptoms and what the relationship is between refractory symptoms and intolerable suffering, which in turn makes it difficult to determine what are necessary and sufficient criteria for palliative sedation at the end of life, and why. As regards the difference between palliative sedation at the end of life and so-called slow euthanasia, the rationale behind stressing the difference is insufficiently demonstrated, e.g. due to an overlooked ambiguity in the concept of intention. It is therefore unclear when palliative sedation at the end of life amounts to abuse and why.ConclusionsThe EAPC framework would have benefited from taking a clearer stand on some ethically controversial issues regarding intolerable suffering and refractory symptoms and regarding the relation between continuous deep palliative sedation at the end of life and euthanasia. In this text, we identify and discuss these issues in the hope that an ensuing discussion will clarify the EAPCs standpoint.

The Ethics of Screening in Health Care and Medicine: Serving Society or Serving the Patient?

Medical or health-oriented screening programs are amongst the most debated aspects of health care and public health practices in health care and public health ethics, as well as health policy discussions. In spite of this, most treatments of screening in the research literature restrict themselves to isolated scientific aspects, sometimes complemented by economic analyses or loose speculations regarding policy aspects. At the same time, recent advances in medical genetics and technology, as well as a rapidly growing societal focus on public health concerns, inspires an increase in suggested or recently started screening programs. This book involves an in-depth analysis of the ethical, political and philosophical issues related to health-oriented screening programs. It explores the considerations that arise when heath care interacts with other societal institutions on a large scale, as is the case with screening: What values may be promoted or compromised by screening programs? What conflicts of values do typically arise – both internally and in relation to the goals of health care, on the one hand, and the goals of public health and the general society, on the other? What aspects of screening are relevant for determining whether it should be undertaken or not and how it should be organised in order to remain defensible? What implications does the ethics of screening have for health care ethics as a whole? These questions are addressed by applying philosophical methods of conceptual analysis, as well as models and theories from moral and political philosophy, medical ethics, and public health ethics, to a large number of ongoing and proposed screening programs which makes this book the first comprehensive work on the ethics of screening. Analyses and suggestions are made that are of potential interest to health care staff, medical researchers, policy makers and the general public.

Challenges for Principles of Need in Health Care

What challenges must a principle of need for prioritisations in health care meet in order to be plausible and practically useful? Some progress in answering this question has recently been made by Hope, Østerdal and Hasman. This article continue their work by suggesting that the characteristic feature of principles of needs is that they are sufficientarian, saying that we have a right to a minimally acceptable or good life or health, but nothing more. Accordingly, principles of needs must answer two distributive questions: when do we have sufficient and how should we prioritise among those who do not yet have a sufficiency? Furthermore, it is argued that Roger Crisp’s theory of need, which combines sufficientarianism with prioritarianism below the threshold of need, is better equipped than alternatives to answer these questions as well as meeting the challenges formulated by Hope, Østerdal and Hasman. However, Crisp’s theory faces two major challenges. First, it has to say something about the currency of distribution: a principle of need must be complemented either with a theory on the human good or a theory about the proper goals of health care. Second, it has to say something about where the threshold should be set. However, any attempt to set a threshold seems morally arbitrary in the light of the sufficientarian idea that those just above the threshold never should be given priority over those just below the threshold.

Honour-related threats and human rights: A qualitative study of Swedish healthcare providers’ attitudes towards young women requesting a virginity certificate or hymen reconstruction

Abstract Objectives To investigate the preferred actions of healthcare staff, as well as their reasoning and attitudes about young females’ requests for a virginity certificate or hymen restoration. Method A qualitative study, consisting of semi-structured interviews of healthcare providers from different parts of Sweden and from different medical specialties and professions, who had experience of women who asked for a virginity certificate or a hymen repair. Results Using content analysis, ten themes emerged regarding healthcare personnels attitudes and reasoning about young female patients and their requests for demonstration of virginity. The themes logically were categorised as values, beliefs, and cultural affiliation. Conclusions Responders had a more pragmatic and permissive view than the restrictive, official Swedish policy opposing hymenoplasties within the public healthcare system. There were degrees of willingness to accommodate such requests, due, for example, to different moral beliefs and medical concerns. Responders expressed frustration over the difficulty of following up patients, a situation likely due to the restrictive policy. The patient-centred approach adopted by a Dutch team of health professionals would probably better enable quality assurance.

How to reveal disguised paternalism

In a Swedish setting physicians are unlikely to give explicitly paternalistic reasons when asked about their attitudes towards patients’ involvement in decision-making. There is considerable risk that they will disguise their paternalism by giving ‘socially correct answers’. We suggest that disguised paternalism can be revealed with the help of indexes based on certain responses in postal questionnaires. The indexes were developed using material from a study examining attitudes of Swedish physicians to physician-assisted suicide (PAS). Apart from being asked about their attitudes, they were asked to prioritise between different arguments for and against PAS. One argument for PAS was: “PAS should be permitted out of respect for patients’ autonomy”. One argument against PAS was: “PAS should not be permitted since the non-maleficence principle in this case takes precedence over respecting patients’ autonomy”. Responses to the latter argument formed the cornerstone of a disguised-paternalism index, while an autonomy index was based on answers to the former argument. Applying our indexes to data from the PAS survey, we found that female GPs, surgeons, and older male physicians were least paternalistic. Among female physicians one finds both the most autonomy-respecting groups (female surgeons and GPs) and the least autonomy-respecting groups (female oncologists and psychiatrists); together with older male physicians in general, female GPs are the group displaying least disguised paternalism. We suggest that questionnaires exploring paternalism might be improved by including case-specific questions or statements by which to explore disguised paternalism. Here our indexes might be useful tools.

Zero tolerance against patriarchal norms? A cross-sectional study of Swedish physicians’ attitudes towards young females requesting virginity certificates or hymen restoration

Many countries, Sweden among them, lack professional guidelines and established procedures for responding to young females requesting virginity certificates or hymen restoration due to honour-related threats. The purpose of the present survey study was to further examine the attitudes of the Swedish healthcare professionals concerned towards young females requesting virginity certificates or hymen restorations. The study indicates that a small majority of Swedish general practitioners and gynaecologists would accommodate these patients, at least given certain circumstances. But a large minority of physicians would under no circumstances help the young females, regardless of speciality, years of practice within medicine, gender, or experience of the phenomenon. Their responses are similar to other areas where it has been claimed that society should adopt a zero tolerance policy against certain phenomena, for instance drug policy, where it has also been argued that society should never act in ways that express support for the practice in question. However, this argument is questionable. A more pragmatic approach would also allow for follow-ups and evaluation of virginity certificates and hymen restorations, as is demonstrated by the Dutch policy. Hence, there are some obvious advantages to this pragmatic approach compared to the restrictive one espoused by a large minority of Swedish physicians and Swedish policy-makers in this area.

The concept of free will and forensic psychiatry.

This text examines how conceptions of free will impact on legal systems and forensic psychiatry: free will is generally regarded as a prerequisite for responsibility, criminal responsibility included, while forensic psychiatry to a large extent deals with the limits imposed on responsibility by mental disorder. First we discuss the question of whether there is and has been such an impact. The answer is yes: different conceptions of free will have inspired different systems of law and forensic psychiatry, as becomes clear when looking at the accountability doctrine as compared to the unique Swedish system rejecting this doctrine. However, there is no necessary connection between doctrines of responsibility and conceptions of free will, since the former primarily says something about when someone should be held responsible and the latter says something about when someone really is free in a sense relevant to responsibility. This leads to the second question: should conceptions of free will have an impact on law and forensic psychiatry? We argue: that they should not, given the implausibility the normative theory retributivism, which posits a direct connection between free will and punishment. More importantly, questions of free will are complicated and unresolved philosophical issues that are better left out of the everyday decision-making incumbent on the legal and psychiatric systems. Instead, we recommend using an empirically useful and gradual conception of autonomy to facilitate the determination of legal responsibility. This autonomy conception, being neutral on the question of free will, eliminates the need to take a stand on it.

Autonomy-based arguments against physician-assisted suicide and euthanasia: a critique

Respect for autonomy is typically considered a key reason for allowing physician assisted suicide and euthanasia. However, several recent papers have claimed this to be grounded in a misconception of the normative relevance of autonomy. It has been argued that autonomy is properly conceived of as a value, and that this makes assisted suicide as well as euthanasia wrong, since they destroy the autonomy of the patient. This paper evaluates this line of reasoning by investigating the conception of valuable autonomy. Starting off from the current debate in end-of-life care, two different interpretations of how autonomy is valuable is discussed. According to one interpretation, autonomy is a personal prudential value, which may provide a reason why euthanasia and assisted suicide might be against a patient’s best interests. According to a second interpretation, inspired by Kantian ethics, being autonomous is unconditionally valuable, which may imply a duty to preserve autonomy. We argue that both lines of reasoning have limitations when it comes to situations relevant for end-of life care. It is concluded that neither way of reasoning can be used to show that assisted suicide or euthanasia always is impermissible.

Values at stake: autonomy, responsibility, and trustworthiness in relation to genetic testing and personalized nutrition advice

Personalized nutrition has the potential to enhance individual health control. It could be seen as a means to strengthen people’s autonomy as they learn more about their personal health risks, and receive dietary advice accordingly. We examine in what sense personalized nutrition strengthens or weakens individual autonomy. The impact of personalized nutrition on autonomy is analyzed in relation to responsibility and trustworthiness. On a societal level, individualization of health promotion may be accompanied by the attribution of extended individual responsibility for one’s health. This constitutes a dilemma of individualization, caused by a conflict between the right to individual freedom and societal interests. The extent to which personalized nutrition strengthens autonomy is consequently influenced by how responsibility for health is allocated to individuals. Ethically adequate allocation of responsibility should focus on prospective responsibility and be differentiated with regard to individual differences concerning the capacity of adults to take responsibility. The impact of personalized nutrition on autonomy also depends on its methodological design. Owing to the complexity of information received, personalized nutrition through genetic testing (PNTGT) is open to misinterpretation and may not facilitate informed choices and autonomy. As new technologies, personalized nutrition and PNTGT are subject to issues of trust. To strengthen autonomy, trust should be approached in terms of trustworthiness. Trustworthiness implies that an organization that develops or introduces personalized nutrition can show that it is competent to deal with both the technical and moral dimensions at stake and that its decisions are motivated by the interests and expectations of the truster.

Early stopping of clinical trials : Charting the ethical terrain

The decision to terminate a clinical trial earlier than planned is often described as ethically problematic, but it is rarely systematically analyzed as an ethical issue in its own right. This paper provides an overview of the main ethical considerations at stake in such decisions and of the main tensions between these considerations. Arguments about informed consent and the impact of early stopping on research and society are explored. We devote particular attention to a familiar conflict that arises with special urgency when early data suggest that the experimental treatment is superior. Should the trial be stopped so that participants in the control group will not be allocated a seemingly inferior treatment, or should it continue in pursuit of evidence conclusive enough to improve the care of future patients? We scrutinize three ways to address this problem. Rather than dissolving the tension, they represent different trade-offs between the respective welfare interests of subjects and future patients.