In this section, we will offer some interpretations of the respondents’ answers to each question and make clear on which points the results suggest that the opinion of the Norwegian lay populace is either in conflict or in line with national law, the CRPD and the Oviedo Convention.
Q1 shows a majority of the respondents agreeing (completely or somewhat) that the patient, in both cases presented as having competence to consent, should have the right to refuse treatment in serious cases like acute myocardial infarction and acute psychosis. As it stands today the case of acute myocardial infarction would fall under the duty of emergency health care and the patient would not have the right to refuse treatment, which would be in conflict with the opinion of the majority of respondents in this survey. In the case of acute psychosis there is not described a situation of great danger for the patient’s own life or the life and health of others, and the case therefore does not fulfil the requirements for compulsory mental health care. This is in line with the opinion expressed by the majority of respondents. There was greater support for the patient’s right to refuse treatment in the case of serious somatic illness than serious mental illness. This is somewhat counterintuitive in regards to the particular cases since the case of myocardial infarction has a higher probability of imminent death than that of psychosis, and has a higher probability of regaining health if given treatment. One possible explanation of the difference is that, even though the mental health care patient is presented as being “able to understand the situation and make her own decisions”, laypersons can nonetheless have a strong association between mental illness, psychosis specifically, and not having competence to consent. The respondents’ prejudices may overshadow the information given about the patient’s competence to consent. Dependent on the impact of this suggested effect, the responses to Q1 may suggest some support for treating cases of serious somatic illness and serious mental illness differently, or suggest the existence of prejudices against the possibility that persons with psychosis may be competent to consent.
A majority of the respondents supports the patient’s rights to refuse information (Q2), with only minor differences between the somatic and mental illness cases. This is in contrast with the current national law. As it stands today, the strict criteria for the possibility to refuse information would not be met in either of these situations, and the health care professionals would have a duty to give information in spite of the patient’s preference. Here the intuitions of the respondents seem to favor the principle of patient autonomy and could therefore be taken as support for a change in legislation.
Q3 shows that a majority of the respondents supports the patient’s rights to refuse treatment based on earlier expressed preferences, both for somatic and mental illness, if the patient presently lacks competence to consent. This is supported in national law, both for somatic and mental health care, but is not clearly regulated.
Q4 and Q5 show the respondents giving far greater support for the proposition that the closest next of kin should have decision-making authority regarding treatment, if in accordance with the patient’s earlier expressed preference, than for the proposition that the doctor should have the deciding role regarding treatment. One possible explanation of this difference is that Q4 was posed before Q5 and that without being aware of other possibilities, or the implications the proposition, Q4 immediately seemed reasonable to the respondents. Then being presented with Q5 they had already committed to the reasonableness of Q4, and then saw Q5 as less reasonable. This could be an instance of the effects of question order widely recognized in survey psychology . The rise in the percentage of respondents who neither agreed nor disagreed supports this hypothesis by indicating a rise in uncertainty presented with an option of a contrary perspective. This effect could be reduced or avoided if we had randomized the order of Q4 and Q5 in the study design. Another possibility is, of course, that the respondents genuinely tend to think that the next of kin should in some cases have the deciding role and not the doctor. If so, then this is significant since it suggests that opinions may go against current national law and practice which clearly assign ultimate decision-making authority to the doctor. Further inquiry is needed to settle this.
The respondents’ answers to Q1-Q5 suggest that the majority of the Norwegian lay populace may put greater emphasis on patient autonomy than the current Norwegian health legislation, and align very well with the provisions in the Oviedo convention .
Q6 shows a clear majority of the respondents agreeing with the proposition that next of kin should have the right to information about the patient when the patient is dependent on care from next of kin. One could argue that the isolated focus on care and the role of next of kin as carer would prompt the respondents to agree with the proposition. Had the respondents also been presented with a situation where a patient preferred to decide what kind of information that should be shared with next of kin, or had reasons for this, it is possible that a significant part of the respondents would have answered otherwise. The response to Q6 is nonetheless interesting because it goes against current law and practice, where the next of kin does not have any right to information, and can only get information with the explicit consent of the patient, given that the patient has competence to consent, which in turn can serve as an obstacle to provide necessary support and information to the next of kin, and thus for the informal care given to the patient.
Q7 shows a clear majority of the respondents agreeing with the proposition that the use of coercion against nursing home patients should be allowed if necessary to secure the safety of other patients. This finding is significant because the use of coercion due to the safety of others is illegal in the current regulation of somatic health care, which is the regulations most often used in cases of dementia . If the case were to go under the regulations of mental health care, which in some cases take into account the safety of others, it would not allow the use of coercion since dementia is generally not considered a serious mental disease.
Q8 shows that a majority of 58% of the respondents agreed (somewhat or completely) that patients with competence to consent should have the same right to refuse treatment independently of whether the illness is mental or somatic. This is in line with article five of the CRPD, which requires non-discrimination and equality for all persons under the law independent of the type of disorder. Interestingly, the respondents who were presented with the mental illness vignette were, as mentioned in the results, more likely to agree than those who were presented with the somatic vignette. One possible explanation of this difference is that mental illness may be a stronger reminder of possible discrimination than somatic illness or that those presented with the somatic case were not presented with a particular case of a mentally ill patient with competence to consent and may therefore be less likely to see this as a possibility. That a majority of the respondents supports equal regulations can give rise to a paradox in relation to the findings of Q1, where the answers suggested that a significant portion of the respondents supports that the cases should be treated differently. It may be that posing the question in a principled manner, instead of particular cases, elicits other intuitions based on more general views of equal rights. It could also be the case that since key principled information is presented together with Q8 than Q1 it is easier to think principled and avoid bias.
Q9 shows that a majority of 55% of the respondents agreed (somewhat or completely) with the proposition that the criteria for the use of coercion and regulations regarding the role of next of kin should be the same for mental health care and somatic health care (against 23% who disagreed somewhat or completely and 22% who neither agreed nor disagreed). The percentages mirror the ones in Q8 and show that a majority of the respondents supports these forms of equality of rights and regulations between somatic and mental health care.
The results suggest that the opinions of the populace diverge from the current regulations on several points. Whether this should be taken as justification for a change in regulations is dependent on the validity of the results (discussed under Limitations) and the validity of the proposed interpretations. It is also dependent on whether and to what extent popular opinion in general should influence the regulation of health care. The fact that everyone in the population is a potential patient, and therefore is directly concerned, speaks in favor of this. The fact that medicine and ethics is a field of expertise, where the health care professional or ethicist is arguably in the best position to know and evaluate all the relevant factors and implications for such regulations speaks against this view. Ideally, good reasons or arguments alone should decide regulations, and not opinions or intuitions. One could object that reasons, or the reasoning of experts, is always ultimately based on intuitions, but these intuitions would be significantly more basic and better informed than the intuitions of laypeople presented with complex cases that they have not previously reflected on or had experience with. Nevertheless, laws are established as part of a democratic process, and if the opinions of the populace are in concordance with well thought out reasons and principles, they can, and perhaps should, serve as a support for developing laws in accordance with these reasons and principles and secure more democratic regulation of health care.
According to the belief-sampling model of survey response, the attitudes tested by such surveys are seen as “a kind of memory structure that contains existing evaluations, vague impressions, general values, and relevant feelings and beliefs” . Thus, answers based on this “memory structure”, from respondents presumed to be largely unfamiliar with these particular ethical questions, are more “intuitions” than they are considered moral judgments. The results of the survey should be interpreted in this light.
It is also the case that there could be several important factors related to the clinical context which are left out in these simplified thought experiments. There could, for example, be different circumstances relating to the reliability of next of kin’s account of the patient’s past verbal expressions of preferences, potential conflict of interest, financial or otherwise, between the patient and next of kin, or between next of kin. As the cases in this study do not include such factors, the responses can be taken to represent the broad attitudes of the population towards some of the principles involved in these ethical questions not including complicating factors.
The low response rate of 8.5% raises the question of the validity of the findings. With such a low response rate there is a potential for non-response bias, i.e. that there is a significant difference between the people who chose to participate in the study and those who declined, so that the results become less representative of the population in general. There are, however, some reasons to believe that a non-response bias does not affect the results of this study to a significant degree (some of which are also discussed in greater depth in an earlier article from the 2017 NOBAS study ).
Most importantly, the randomization of respondents to receive either one of two different vignettes counteracts any sample biases. Randomization will have distributed relevant factors equally among the two groups. There is a high correspondence between the demographic characteristics of the national average and that of the respondents, and the answers from underrepresented groups were given more weight to further increase this correspondence. Furthermore, there is evidence that non-response bias poses less problems in surveys about respondents’ attitudes than those involving respondents’ self-reported activities . Fourthly, the invitation email did not disclose the nature of the topics of the survey. The survey was presented as a «survey on attitudes towards ethical questions», and could therefore lead to respondents with high interest in ethical questions in general to be more likely to participate. Nevertheless, since there is no reason to believe that a higher interest in ethical questions would correlate with a preference for certain views, this would not likely lead to any bias effects on the results (perhaps with the exception of a lower level of indifferent answers) . The survey also consisted of different parts, of which all had to be completed, which further reduces bias towards a particular topic.
The problem of low response rate is a general problem in population survey-research, and detailed analyses indicate that, although a survey has a very low response rate, the survey may nevertheless be representative of the population [21, 22]. There are therefore several reasons why non-response bias does not significantly affect the results of this survey. Thus, even though the results must be taken to contain a certain degree of uncertainty, they can still be seen as good indications of the true opinions of the populace.