"It is very hard to just accept this" - a qualitative study of palliative care teams' ethical reasoning when patients do not want information.

BACKGROUND: The aim of this study was to explore how palliative care staff reason about the autonomy challenge that arises when a patient who has first said he wants full information appears to change his mind and rejects being informed. METHODS: The study had a qualitative and exploratory design. Participants (physicians, registred nurses, social workers, physiotherapists and occupational therapists) were recruited from palliative care teams in southern Sweden. Six separate focus group interviews with a total number of 33 participants were conducted. The teams were asked to discuss a fictional case of a man who first wants, then rejects, information about his situation. The interviews were audiotaped and transcribed verbatim. Reflexive thematic analysis following Braun and Clarke was undertaken to analyse data. RESULTS: The analysis resulted in three themes: Patients have a right to reject information, Questioning whether this patient WANTS to reject information and There are other values at stake, too. Although participants endorsed a right to reject information, they were unsure whether this right was relevant in this situation, and furthermore felt that it should be balanced against counteracting factors. The effect of such balancing was that participants would aim to find a way to present relevant information to the patient, but in a probing and flexible way. CONCLUSIONS: In their work with dying patients, palliative care staff meet many autonomy challenges. When faced with a choice to withhold information as per a patient's wishes, or to provide information with the patient's best interest in mind, staff find it hard to balance competing values. Staff also find it hard to balance their own interests against a purely professional stance. The overall strategy seems to be to look for caring ways to impart the information.

Smoking and home oxygen therapy: a review and consensus statement from a multidisciplinary Swedish taskforce.

BACKGROUND: Home oxygen therapy (HOT) improves survival in patients with hypoxaemic chronic respiratory disease. Most patients evaluated for HOT are former or active smokers. Oxygen accelerates combustion and smoking may increase the risk of burn injuries and fire hazards; therefore, it is considered a contraindication for HOT in many countries. However, there is variability in the practices and policies regarding this matter. This multidisciplinary Swedish taskforce aimed to review the potential benefits and risks of smoking in relation to HOT, including medical, practical, legal and ethical considerations. METHODS: The taskforce of the Swedish Respiratory Society comprises 15 members across respiratory medicine, nursing, medical law and ethics. HOT effectiveness and adverse risks related to smoking, as well as practical, legal and ethical considerations, were reviewed, resulting in five general questions and four PICO (population-intervention-comparator-outcome) questions. The strength of each recommendation was rated according to the GRADE (grading of recommendation assessment, development and evaluation) methodology. RESULTS: General questions about the practical, legal and ethical aspects of HOT were discussed and summarised in the document. The PICO questions resulted in recommendations about assessment, management and follow-up of smoking when considering HOT, if HOT should be offered to people that meet the eligibility criteria but who continue to smoke, if a specific length of time of smoking cessation should be considered before assessing eligibility for HOT, and identification of areas for further research. CONCLUSIONS: Multiple factors need to be considered in the benefit/risk evaluation of HOT in active smokers. A systematic approach is suggested to guide healthcare professionals in evaluating HOT in relation to smoking.

Challenges regarding informed consent in recruitment to clinical research: a qualitative study of clinical research nurses' experiences.

BACKGROUND: Clinical research nurses (CRNs) have first-hand experience with ethical challenges and play a crucial role in upholding ethical conduct and adherence to the principles of informed consent in clinical research. This study explores the ethical challenges encountered by CRNs in the process of obtaining informed consent for clinical research. METHODS: A qualitative exploratory design. Semistructured interviews (n = 14) were conducted with diverse CRNs in Sweden. These CRNs covered a wide range of research fields, including pharmaceutical and academic studies, interventions, and observational research, spanning different trial phases, patient categories, and medical conditions. The interviews were analysed using inductive qualitative content analysis. RESULTS: The analysis identified three main categories: (i) threats to voluntariness, (ii) measures to safeguard voluntariness, and (iii) questionable exclusion of certain groups. CRNs face challenges due to time constraints, rushed decisions, information overload, and excessive reliance on physicians' recommendations. Overestimating therapeutic benefits in stages of advanced illness emerged as a risk to voluntariness. CRNs outlined proactive solutions, such as allowing ample decision-making time and offering support, especially for terminally ill patients. Concerns were also voiced about excluding certain demographics, such as those with language barriers or cognitive impairments. CONCLUSIONS: In conclusion, upholding ethical research standards requires recognising various factors affecting patient voluntariness. Researchers and CRNs should prioritise refining the informed consent process, overcoming participation challenges, and aligning scientific rigour with personalised care. Additionally, a concerted effort is vital to meet the diverse needs of patient populations, including equitable inclusion of individuals with language barriers or cognitive limitations in clinical studies. These findings have significant implications for enhancing the ethics of clinical research and advancing person-centred care.

The Ethical Relevance of "Alternatives" in Health Care Priority Setting - The Case of Preexposure Prophylaxis (PrEP) of HIV.

Preexposure prophylaxis for HIV is a drug that reduces the risk for an HIV-negative person to acquire HIV if taken prior to sex. It has been suggested that it is important for resource allocation decisions that there are alternatives (such as abstinence, masturbation, etc.) for individuals potentially benefitted by this prophylaxis. In this paper we explore this idea from an ethical perspective in relation to three notions often discussed in priority setting ethics, namely responsibility, outcomes, and severity of disease. While the relevance of alternatives may be explained in terms by responsibility-sensitive priority setting, such a view comes with several challenges. We then discuss two other ways in which this intuition could be better explained: (a) in terms of total outcome of health, and (b) in terms of severity of the condition.

Personal responsibility for health? A phenomenographic analysis of general practitioners' conceptions.

OBJECTIVE: To analyse and describe general practitioners' perceptions of the notion of a 'personal responsibility for health'. DESIGN: Interview study, phenomenographic analysis. SETTING: Swedish primary health care. SUBJECTS: General Practitioners (GPs). MAIN OUTCOME MEASURES: Using the phenomenographic method, the different views of the phenomenon (here: personal responsibility for health) were presented in an outcome space to illustrate the range of perceptions. RESULTS: The participants found the notion of personal responsibility for health relevant to their practice. There was a wide range of perceptions regarding the origins of this responsibility, which was seen as coming from within yourself; from your relationships to specific others; and/or from your relationship with the generalized other. Furthermore, the expressions of this responsibility were perceived as including owning your health problem; not offloading all responsibility onto the GP; taking active measures to keep and improve health; and/or accepting help in health. The GP was described as playing a key role in shaping and defining the patient's responsibility for his/her health. Some aspects of personal responsibility for health roused strong emotions in the participants, especially situations where the patient was seen as offloading all responsibility onto the GP. CONCLUSION: The notion of personal responsibility for health is relevant to GPs. However, it is open to a broad range of interpretations and modulated by the patient-physician interaction. This may make it unsuitable for usage in health care priority settings. More research is mandated to further investigate how physicians work with patient responsibility, and how this affects the patient-physician relationship and the physician's own well-being.Key PointsThe notion of personal responsibility for health has relevance for discussions about priority setting and person-centred care.This study, using a phenomenographic approach, investigated the views of Swedish GPs about the notion of personal responsibility for health.The participants found the notion relevant to their practice. They expressed a broad range of views of what a personal responsibility for health entails and how it arises. The GP was described as playing a key role in shaping and defining the patient's responsibilities for his/her health.The notion was emotionally charged to the participants, and when patients were seen as offloading all responsibility onto the GP this gave rise to frustration.

Better in theory than in practise? Challenges when applying the luck egalitarian ethos in health care policy.

Luck egalitarianism, a theory of distributive justice, holds that inequalities which arise due to individuals' imprudent choices must not, as a matter of justice, be neutralized. This article deals with the possible application of luck egalitarianism to the area of health care. It seeks to investigate whether the ethos of luck egalitarianism can be operationalized to the point of informing health care policy without straying from its own ideals. In the transition from theory to practise, luck egalitarianism encounters several difficulties. We argue that the charge of moral arbitrariness can, at least in part, be countered by our provided definition of "imprudent actions" in the health area. We discuss the choice for luck egalitarianism in health care between ex ante and ex post policy approaches, and show how both approaches are flawed by luck egalitarianism's own standards. We also examine the problem of threshold setting when luck egalitarianism is set to practise in health care. We argue that wherever policy thresholds are set, luck egalitarianism in health care risks pampering the imprudent, abandoning the prudent or, at worst, both. Furthermore, we claim that moves to mitigate these risks in turn diminish the normative importance of the ethos of luck egalitarianism to policy. All in all, our conclusion is that luck egalitarianism cannot be consistently applied as a convincing and relevant normative principle in health care policy.

[A common ethical dilemma in the clinical setting concerns the trade-off between beneficence and respecting patients' autonomy]. / När patienten vill ha behandling som vi inte tror är den optimala - En allt viktigare etisk avvägning i kliniken ­ göra gott och respektera patientens autonomi och samtidigt vara rättvis.

This article highlights a special subtype of this dilemma, in which the patient requests a treatment that the physician judges to be substandard. Reasons for and against providing substandard treatment in the name of patient autonomy are presented and discussed. It is suggested that physicians carefully consider the risk of crowding out of other patients if substandard treatment is provided.

"Right to recommend, wrong to require"- an empirical and philosophical study of the views among physicians and the general public on smoking cessation as a condition for surgery.

BACKGROUND: In many countries, there are health care initiatives to make smokers give up smoking in the peri-operative setting. There is empirical evidence that this may improve some, but not all, operative outcomes. However, it may be feared that some support for such policies stems from ethically questionable opinions, such as paternalism or anti-smoker sentiments. This study aimed at investigating the support for a policy of smoking cessation prior to surgery among Swedish physicians and members of the general public, as well as the reasons provided for this. METHODS: A random sample of general practitioners and orthopaedic surgeons (n = 795) as well as members of the general public (n = 485) received a mail questionnaire. It contained a vignette case with a smoking 57-year old male farmer with hip osteoarthritis. The patient had been recommended hip replacement therapy, but told that in order to qualify for surgery he needed to give up smoking four weeks prior to and after surgery. The respondents were asked whether making such qualifying demands is acceptable, and asked to rate their agreement with pre-set arguments for and against this policy. RESULTS: Response rates were 58.2% among physicians and 53.8% among the general public. Of these, 83.9% and 86.6%, respectively, agreed that surgery should be made conditional upon smoking cessation. Reference to the peri-operative risks associated with smoking was the most common argument given. However, there was also strong support for the argument that such a policy is mandated in order to achieve long term health gains. CONCLUSIONS: There is strong support for a policy of smoking cessation prior to surgery in Sweden. This support is based on considerations of peri-operative risks as well as the general long term risks of smoking. This study indicates that paternalistic attitudes may inform some of the support for peri-operative smoking cessation policies and that at least some respondents seem to favour a "recommendation strategy" vis-à-vis smoking cessation prior to surgery rather than a "requirement strategy". The normative reasons speak in favour of the "recommendation strategy".

Is healthcare providers' value-neutrality depending on how controversial a medical intervention is? Analysis of 10 more or less controversial interventions.

BACKGROUND: Swedish healthcare providers are supposed to be value-neutral when making clinical decisions. Recent conducted studies among Swedish physicians have indicated that the proportion of those whose personal values influence decision-making (the value-influenced) vary depending on the framing and the nature of the issue. OBJECTIVE: To examine whether the proportions of value-influenced and value-neutral participants vary depending on the extent to which the intervention is considered controversial. METHODS: To discriminate between value-neutral and value-influenced healthcare providers, we have used the same methods in six vignette based studies including 10 more or less controversial interventions. To be controversial was understood as being an intervention where conscientious objections in healthcare have been proposed or an intervention that is against law and regulations. RESULTS: End of life decisions and female reproduction issues are associated with conscientious objection and more or less against regulations, and also resulted in the highest proportions of value-influenced participants. Following routines, which is not in conflict with official values, were associated with one of the lowest proportion of value-influenced participants. The difference between the highest and lowest proportions of value-influenced participants among the 10 examined interventions was significant (81.8% (95% confidence interval: 78.1-85.5) versus 34.7% (95% confidence interval: 29.2-40.2)). CONCLUSION: The study indicates that the proportions of value-neutral participants decrease the more controversial an issue is, and vice versa. In some cases, however, framing effects may potentiate or obscure this association. As a bold hypothesis, we suggest the proportion of value-neutral or value-influenced might indicate how controversial an issue is.

Empirical and philosophical analysis of physicians' judgments of medical indications.

BACKGROUND: The aim of this study was to investigate whether physicians who felt strongly for or against a treatment, in this case a moderately life prolonging non-curative cancer treatment, differed in their estimation of medical indication for this treatment as compared to physicians who had no such sentiment. A further aim was to investigate how the notion of medical indication was conceptualised. METHODS: A random sample of GPs, oncologists and pulmonologists (n = 646) comprised the study group. Respondents were randomised to receive either version of a case presentation; in one version, the patient had smoked and in the other version she had never smoked. The physicians were labelled value-neutral (65%) and value-influenced (35%) on the basis of their attitude towards the treatment. RESULTS: In the 'value-influenced' group, there was a significant difference in the estimation of medical indication for treatment depending upon whether the patient had smoked (50% (95% CI: 41-59) or never smoked (67% (95% CI: 58-76) (Chi-2 = 5.8, df = 1; p = 0.016)). There was no such difference in the 'value-neutral' group. CONCLUSION: This study shows that compared to value-neutral physicians, value-influenced physicians are more likely to base decisions of medical indication on medically irrelevant factors (in this case: the patient's smoking status). Moreover, medical indication is used in an ambiguous manner. Hence, we recommend that the usage of 'medical indication' be disciplined.

[Physicians see both pros and cons of health care financial management. Questionnaire study provides more insights--with starting point in controversial DN-article series]. / Läkare ser både för- och nackdelar med vårdens ekonomiska styrning - Enkätstudie ger fler nyanser - med avstamp i omdebatterad DN-artikelserie.

In the spring of 2013, the Swedish journalist Maciej Zaremba wrote a series of articles criticizing the impact of NPM (New Public Management) on Swedish health care. The present study examines the views of experienced Swedish physicians (general practitioners and internal medicine speclialists) on the problems focused in Mr Zaremba's article series. The respondents (51 general practitioners and 61 internal medicine specialists) mention advantages as well as disadvantages with NPM in Swedish health care. The majority agrees that with NPM, physicians loose influence over health care governance to other professional groups. The majority disagree with the charge made by Mr Zaremba that NPM has had the effect of manipulating Swedish physicians away from the standards of good medical care.

'Are smokers less deserving of expensive treatment? A randomised controlled trial that goes beyond official values'.

BACKGROUND: To investigate whether Swedish physicians, contrary to Swedish health care policy, employ considerations of patient responsibility for illness when rationing expensive treatments. METHODS: A random sample of oncologists and pulmonologists made up the main study-group (n = 296). A random sample of GPs (n = 289) and participants from the general population (n = 513) was used as contrast group. The participants randomly received one version of a questionnaire containing a case description of a terminally ill lung cancer patient. The two versions differed in only one aspect: in one version the patient was a smoker and in the other a non-smoker. The main questions were whether to offer a novel, expensive and marginally life-prolonging treatment and whether the patient could be held responsible for her illness. The quantitative data was analysed using Chi2-tests and comments were analysed using content analysis. RESULTS: Among oncologists and pulmonologists, 78% (95% CI: 72-85) would offer the treatment to the non-smoker and 66% (95% CI: 58-74) to the smoker (Chi-2 = 5.4, df = 1, p = 0.019). Among the GPs, 69% (95% CI: 61-76) would treat the non-smoker and 56% (95% CI: 48-64) the smoker (Chi-1 = 4.9, df = 1 and p = 0.026). Among the general population the corresponding proportions were 84% (95% CI: 79-88) and 69% (95% CI: 63-74). CONCLUSION: This study indicates that applying an experimental design allowed us to go beyond the official norms and to show that, compared to a smoking patient, both the general population and physicians are more inclined to treat a non-smoking patient. This clearly runs counter to the official Swedish health care norms. It also seems to run counter to the fact that among the physicians studied, there was no association between finding the patient responsible for her disease and the inclination to treat her. We think these paradoxical findings merit further studies.