"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.

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.

"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".

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.

'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.