Trends in Swedish physicians' attitudes towards physician-assisted suicide: a cross-sectional study.

AIMS: To examine attitudes towards physician-assisted suicide (PAS) among physicians in Sweden and compare these with the results from a similar cross-sectional study performed in 2007. PARTICIPANTS: A random selection of 250 physicians from each of six specialties (general practice, geriatrics, internal medicine, oncology, surgery and psychiatry) and all 127 palliative care physicians in Sweden were invited to participate in this study. SETTING: A postal questionnaire commissioned by the Swedish Medical Society in collaboration with Karolinska Institute in Stockholm. RESULTS: The total response rate was 59.2%. Slightly fewer than half [47.1% (95% CI 43.7-50.5)] of the respondents from the six specialties accepted PAS, which is significantly more than accepted PAS in the 2007 study [34.9% (95% CI 31.5-38.3)]. Thirty-three percent of respondents were prepared to prescribe the needed drugs. When asked what would happen to the respondent's own trust in healthcare, a majority [67.1% (95% CI 63.9-70.3)] stated that legalizing PAS would either not influence their own trust in healthcare, or that their trust would increase. This number is an increase compared to the 2007 survey, when just over half [51.9% (95% CI 48.0-55.2)] indicated that their own trust would either not be influenced, or would increase. CONCLUSIONS: The study reveals a shift towards a more accepting attitude concerning PAS among physicians in Sweden. Only a minority of the respondents stated that they were against PAS, and a considerable proportion reported being prepared to prescribe the needed drugs for patient self-administration if PAS were legalized.

Genetic testing for breast cancer risk, from BRCA1/2 to a seven gene panel: an ethical analysis.

BACKGROUND: Genetic testing is moving from targeted investigations of monogenetic diseases to broader testing that may provide more information. For example, recent health economic studies of genetic testing for an increased risk of breast cancer suggest that it is associated with higher cost-effectiveness to screen for pathogenic variants in a seven gene panel rather than the usual two gene test for variants in BRCA1 and BRCA2. However, irrespective of the extent to which the screening of the panel is cost-effective, there may be ethical reasons to not screen for pathogenic variants in a panel, or to revise the way in which testing and disclosing of results are carried out. MAIN TEXT: In this paper we discuss the ethical aspects of genetic testing for an increased risk of breast cancer with a special focus on the ethical differences between screening for pathogenic variants in BRCA1/2 and a seven gene panel. The paper identifies that the panel increases the number of secondary findings as well as the number of variants of uncertain significance as two specific issues that call for ethical reflection. CONCLUSIONS: We conclude that while the problem of handling secondary findings should not be overstated with regard to the panel, the fact that the panel also generate more variants of uncertain significance, give rise to a more complex set of problems that relate to the value of health as well as the value of autonomy. Therefore, it is insufficient to claim that the seven gene panel is preferable by only referring to the higher cost effectiveness of the panel.

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.

Heed or disregard a cancer patient's critical blogging? An experimental study of two different framing strategies.

BACKGROUND: We have examined healthcare staff attitudes of toward a blogging cancer patient who publishes critical posts about her treatment and their possible effect on patient-staff relationships and treatment decisions. METHODS: We used two versions of a questionnaire containing a vignette based on a modified real case involving a 39-year-old cancer patient who complained on her blog about how she was encountered and the treatment she received. Initially she was not offered a new, and expensive treatment, which might have influenced her perception of further encounters. In one version of the vignette, the team decides to put extra effort into both encounters and offers the expensive new cancer treatment. In the other version, the team decides to follow the clinic's routine to the letter. Subsequently, blog postings became either positive or negative in tone. We also divided participants into value-neutral and value-influenced groups (regarding personal values) by asking how their trust in healthcare would be affected if the team's suggestion were followed. RESULTS: A total of 56 % (95 % CI: 51-61) of the respondents faced with a team decision to 'do something-extra' in encounters would act in accordance with this ambition. Concerning treatment, 32 % (95 % CI: 28-38) would follow the team's decision to offer a new and expensive treatment. A large majority of those who received the "follow-routine" version agreed to do so in encountering [94 % (95 % CI: 91-97)]. Similar proportions were found regarding treatment [86 % (95 % CI: 82-90)]. A total of 83 % (95 % CI: 76-91) of the value-neutral participants who received the "do-something-extra" version stated that they would act as the team suggested regarding encounters, while 57 % (95 % CI: 47-67) would do so in regard to treatment. Among the value-influenced participants who received the "do-something-extra" version, 45 % (95 % CI: 38-51) stated that they would make an extra effort to accommodate the patient and her needs, while the proportion for treatment was 22 % (95 % CI: 16-27). Among those who had received the "follow-routine" version, a large majority agreed, and no difference was indicated between the value-neutral and the value-influenced participants. CONCLUSION: The present study indicates that healthcare staff is indeed influenced by reading a patient's critical blog entries, largely regarding encounters, but also concerning treatment is concerned. Value-neutral healthcare personnel seem to exhibit a pragmatic attitude and be more inclined to heed and respond to a patient whose criticism may well be warranted. The study also indicates that healthcare staff is partly positive or negative to future blogging patients depending on how the issue has been framed. For future research we suggest as a bold hypothesis that the phrase "clinical routine" might conceal power aspects masquerading as adopted ethical principles.

'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.

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.

Are there morally relevant differences between hymen restoration and bloodless treatment for Jehovah's Witnesses?

BACKGROUND: Hymen reconstruction is a controversial measure performed to help young females under threat of honour-related violence. Official guidelines often reject offering hymen reconstructions. On the other hand, extraordinary measures in order to enable operations of Jehovah's Witnesses who want a bloodless operation in order to avoid religiously related sanctions are often considered praiseworthy. The aim is thus to examine whether or not there are relevant differences between these two measures. DISCUSSION: We identified twelve potential differences. One difference could be considered relevant (patient-safety), but in favour of hymenoplastic operations. SUMMARY: Since we did not identify enough relevant differences to justify offering bloodless operations to Jehovah's Witnesses but not offering hymen reconstruction due to honour-related norms, we conclude that these two groups of patients should be treated equally. This means that neither of the patient groups should be offered these extraordinary operations or that both groups of patients should be offered such operations. Similarly, there are no reasons for judging those who perform the operations differently.

Are physicians' estimations of future events value-impregnated? Cross-sectional study of double intentions when providing treatment that shortens a dying patient's life.

The aim of the present study was to corroborate or undermine a previously presented conjecture that physicians' estimations of others' opinions are influenced by their own opinions. We used questionnaire based cross-sectional design and described a situation where an imminently dying patient was provided with alleviating drugs which also shortened life and, additionally, were intended to do so. We asked what would happen to physicians' own trust if they took the action described, and also what the physician estimated would happen to the general publics' trust in health services. Decrease of trust was used as surrogate for an undesirable action. The results are presented as proportions with a 95 % Confidence Interval (CI). Statistical analysis was based on inter-rater agreement (Weighted Kappa)-test as well as χ (2) test and Odds Ratio with 95 % CI. We found a moderate inter-rater agreement (Kappa = 0.552) between what would happen with the physicians' own trust in healthcare and their estimations of what would happen with the general population's trust. We identified a significant difference between being pro et contra the treatment with double intentions and the estimation of the general population's trust (χ(2) = 72, df = 2 and p < 0.001). Focusing on either decreasing or increasing own trust and being pro or contra the action we identified a strong association [OR 79 (CI 25-253)]. Although the inter-rater agreement in the present study was somewhat weaker compared to a study about the explicit use of the term 'physicians assisted suicide' we found that our hypothesis-physicians' estimations of others' opinions are influenced by their own opinions-was corroborated. This might have implications in research as well as in clinical decision-making. We suggest that Merton's ideal of disinterestedness should be highlighted.

End-of-life decisions and the reinvented Rule of Double Effect: a critical analysis.

The Rule of Double Effect (RDE) holds that it may be permissible to harm an individual while acting for the sake of a proportionate good, given that the harm is not an intended means to the good but merely a foreseen side-effect. Although frequently used in medical ethical reasoning, the rule has been repeatedly questioned in the past few decades. However, Daniel Sulmasy, a proponent who has done a lot of work lately defending the RDE, has recently presented a reformulated and more detailed version of the rule. Thanks to its greater precision, this reinvented RDE avoids several problems thought to plague the traditional RDE. Although an improvement compared with the traditional version, we argue that Sulmasy's reinvented RDE will not stand closer scrutiny. Not only has the range of proper applicability narrowed significantly, but, more importantly, Sulmasy fails to establish that there is a morally relevant distinction between intended and foreseen effects. In particular, he fails to establish that there is any distinction that can account for the alleged moral difference between sedation therapy and euthanasia.

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.

Moral differences in deep continuous palliative sedation and euthanasia.

In palliative care there is much debate about which end of life treatment strategies are legitimate and which are not. Some writers argue that there is an important moral dividing-line between palliative sedation and euthanasia, making the first acceptable and the latter not. We have questioned this. In a recent article, Lars Johan Materstvedt has argued that we are wrong on two accounts: first, that we fail to account properly for the moral difference between continuous deep palliative sedation at the end of life and euthanasia, and, second, that we fail to account properly for the difference between permanent loss of consciousness and death. Regarding the first objection, we argue that Materstvedt misses the point: we agree that there is a difference in terms of intentions between continuous deep palliative sedation and euthanasia, but we question whether this conceptual difference makes up for a moral difference. Materstvedt fails to show that it does. Regarding the second objection, we argue that if nothing else is at stake than the value of the patient's life, permanent unconsciousness and death are morally indifferent.

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 prioritize 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.

Insurance companies' access to genetic information: why regulation alone is not enough.

The background of this paper is the ongoing dismantling of the social insurance systems in favour of commercialisation and privatisation of insurances needed for illness, old age and premature death. This combined with the increased possibility of using genetic testing for differentiating personal insurance premiums has the potentiality of creating a 'genetic proletariat'--an uninsurable high-risk population. The common way of handling this problem in Sweden, and many other developed countries around the North Atlantic, has been to regulate insurance companies' right to ask for and use genetic information in various ways. There is a distinction between partial regulation (that allows insurance companies access to genetic information from genetic tests already made, sometimes only above a specified amount, but not to demand new tests) and total regulation (that forbids insurance companies to ask for or use any genetic information). I will argue that these forms of regulation probably will have adverse consequences given the dismantling of collective social insurance systems. If this is convincing, a better way to solve the problem of an uninsurable high-risk population (and other problems) is to resurrect the collective, obligatory insurance systems in which the individual risk profile does not constitute a basis for premium determination. Both arguments cast in terms of consequences and justice render support for this conclusion.