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Would physician-assisted suicide jeopardize trust in the medical services? An empirical study of attitudes among the general public in Sweden
Anna Lindblad, Rurik Lfmark and Niels Lyne Scand J Public Health 2009 37: 260 originally published online 30 January 2009 DOI: 10.1177/1403494808098918 The online version of this article can be found at: http://sjp.sagepub.com/content/37/3/260

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Scandinavian Journal of Public Health, 2009; 37: 260264

ORIGINAL ARTICLE

Would physician-assisted suicide jeopardize trust in the medical services? An empirical study of attitudes among the general public in Sweden

ANNA LINDBLAD, RURIK LOFMARK & NIELS LYNOE

Medical Ethics Unit, Karolinska Institute, Stockholm, Sweden

Abstract Aim: To investigate the attitudes among the Swedish population towards physician-assisted suicide, with special regard to the possible effects on trust in the medical services of physician-assisted suicide being allowed. Design: A postal questionnaire about physician-assisted suicide under certain conditions and its possible influence on trust in the medical services was distributed to 1206 randomly selected individuals living in the county of Stockholm. Two reminders were distributed, followed by a short version of the questionnaire containing only the question about the attitude towards physician-assisted suicide. Results: The total response rate was 51%, a short-version reminder adding another 7%. Of all participants, 73% were in favour of physician-assisted suicide, 12% were against, and 15% were undecided. They believed that their trust in the medical services would increase (38%) or not be influenced at all (45%) if physician-assisted suicide were to be allowed. However, 75% of those who were against physician-assisted suicide believed that their trust would decrease. As compared to those reporting high trust in medical services (n 492), those with low trust (n 97) stated that their trust would increase, 36% (confidence interval (CI) 3537%) vs. 49% (95% CI 3959%). Thirty-three per cent (95% CI 2838%) of the younger respondents (<50 years), and 43% (95% CI 3749%) of the older respondents believed that their trust would increase. Conclusions: We found no evidence for the assumption that trust in the medical services would be unambiguously jeopardized if physician-assisted suicide were to be legalized. Only among the minority who opposed physician-assisted suicide did a majority of respondents report that their trust would decrease.

Key Words: Physician-assisted suicide, public attitudes, trust

Introduction Physician-assisted suicide (PAS) is allowed in the Netherlands and the US state of Oregon, and will soon be allowed in Luxembourg [1], but the issue is debated in many other countries. In Switzerland, the penal code does not condemn assisted suicide, whether carried out by a medical doctor or by another person, provided that it is not done for selfish reasons [2]. Californian lawmakers have introduced the Compassionate Choices Act, which is based on the Oregon law, but this Act was recently shelved [3]. Similarly, a bill to legalize PAS was recently introduced and defeated in the UK [4]. In Belgium, where euthanasia is allowed, the legal status of PAS is ambiguous [5]. A common argument

against PAS is that it could erode trust in the medical services [6]; however, this apprehension has not been confirmed by any empirical studies from any of the above-mentioned countries [7]. In Sweden, suicide is not a crime, and nor is assisting a person to commit suicide under certain welldefined conditions. However, healthcare professionals are not supposed to prescribe, at the request of a patient, a lethal dose of drugs for self-administration. However controversial, legally this is regarded as negligence, and healthcare professionals can risk losing their licence if they do so [8]. However, in Sweden, PAS is less controversial than euthanasia, which is a criminal offence punishable by at least 1 years imprisonment. In a Swedish context, it thus

Correspondence: Anna Lindblad, Medical Ethics Unit, Karolinska Institutet, SE-171 77 Stockholm, Sweden. Tel: 46 0 8 5248 79 07. Fax: 46 0 8 34 51 28. E-mail: anna.lindblad@ki.se (Accepted 4 September 2008) 2009 the Nordic Societies of Public Health DOI: 10.1177/1403494808098918

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Would physician-assisted suicide jeopardize trust in the medical services? seems reasonable to distinguish between PAS, defined as a physician providing a terminally ill patient with a lethal dose of drugs for self-administration, and euthanasia, defined as a physician deliberately administering a lethal dose of drugs both at the wellconsidered request of a decision-competent patient. Previous studies in Sweden have made no distinction between PAS and euthanasia, and it is therefore not known whether attitudes towards these measures differ. Accordingly, we recently conducted a survey on the attitudes of Swedish physicians towards PAS [6]. The results indicated that one reason for physicians not accepting PAS was the belief that this could jeopardize the general publics trust in the medical services. The present study was therefore conducted in order to investigate whether this apprehension would be confirmed by the general public, as well as to compare attitudes towards PAS among physicians and the general population. Material and methods During the spring of 2007, a postal questionnaire almost similar to that used in the study on physicians attitudes was distributed to 1206 randomly selected individuals of random gender, aged 18 years and living in the county of Stockholm. The participants were asked whether they were for, against or doubtful about PAS, given that certain criteria were met; see Table I. The listed criteria were constructed against the backdrop of the criteria in the Netherlands and in Oregon. The respondents were also asked to prioritize between different fixed arguments for and against PAS, or to supply arguments of their own. Finally, they were asked whether or not PAS if allowed would influence their trust in the medical services. In order to determine whether or not the succession of the provided fixed options influenced the response pattern, we made two versions of the questionnaire, one in which the option Yes came before No, and one in which No came before Yes, with In doubt in the middle of both versions. We distributed these two versions of the questionnaire randomly. Two reminders were sent

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2 weeks and 4 weeks later, respectively. A short version, including only the same background information and the question about whether or not to accept PAS, was finally mailed a few weeks later. The data were registered and analysed using Epi Info 6; regression analyses were run using the SPSS software. When calculating p-values, we used chisquare tests, and when comparing proportions, we used 95% confidence intervals (CIs); CIs that do not overlap each other indicate that if a hypothesis test had been conducted, the p-value would have been <0.001. The present study was approved by the Regional Research Ethical Committee in Stockholm (Dnr 2007/310-31). Results Participants Thirteen of the 1206 questionnaires were returned as undeliverable. The total response rate was 51%, with a short-version reminder, displaying only attitudes towards PAS and personal data, adding another 7%. As compared to those who responded initially, those who answered the last, short version of the questionnaire tended to be more in doubt (14%; 95% CI 1117%) vs. 23% (95% CI 1432%). There was no difference in response pattern with regard to which of the response options, Yes or No, came first or last. The mean age of the respondents was 49 years, ranging from 16 to 100 years. There was a slight majority of women (male/female 46%: 54%), which might be compared to the male/female ratio in the original group of randomly selected individuals (male/female 47%: 53%). The overall male/female ratio in the County of Stockholm was 49%: 51% [9]. Among non-respondents, the balance of the genders was the same. Main outcome Of the 698 respondents, 72.1% were in favour of PAS, 11.5% were against, and 15.0% were undecided; 10 individuals did not respond to the question at all. No age- or gender-related differences were

Table I. Criteria used by the respondents in deciding about their attitude towards physician-assisted suicide (PAS). The prescription of a lethal drug must be legally accepted by the authorities The patient must be at the end of life and regard his/her suffering as unbearable The patient must be decision-competent and well-informed about alternative palliative measures The patient must be asking for PAS by him/herself and there must be no influence from others The patient must be capable of administering the drug by him/herself The patient must not be suffering from any treatable psychiatric disorder The treating physician must have known the patient for a considerable period of time A second physician must verify that the listed criteria are fulfilled

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A. Lindblad et al. Arguments for and against PAS We provided certain fixed arguments for and against PAS. The most prioritized arguments for PAS were respect for patients autonomy, chosen by 56%, followed by the purpose is to alleviate the suffering of a human being, not primarily to hasten death, chosen by 32%. The most prioritized arguments against PAS were that the non-maleficence principle should take precedence over the autonomy principle, chosen by 34%, followed by risk of pressure from relatives, chosen by 30% (Table III). The doubtful group did not display the same priority setting of arguments as proponents and opponents of PAS; among the two most prioritized arguments were one against and one in favour of PAS (Table III). One per cent of the proponents, 4% of the opponents and 4% of the undecided prioritized their own arguments.

found in the response pattern for this question. The group replying to the last version of the questionnaire (n 86) tended to have a larger proportion of doubtfuls than those replying earlier: 23% (95% CI 1432%) vs. 14% (95% CI 1117%). The respondents current trust in the healthcare system was reported as 83% having very high or fairly high trust and 17% as having rather low or very low trust. On the question of the possible effect on trust if PAS were to be allowed under the given criteria, on average 17% believed that their trust would decrease, whereas 38% believed that their trust would increase and 45% that their trust would not be influenced at all. As compared to those displaying high trust in the healthcare system (n 492), more of those who displayed low trust (n 97) believed that their trust would increase if PAS was legalized, 36% (95% CI 3537%) vs. 49% (95% CI 3959%). There was a correlation between attitude towards PAS and influence on trust (Table II). As compared with the group of younger respondents (<50 years), significantly more among the older respondents (449 years) expected a growth of trust (p 0.04).

Discussion Validity aspects One of the objectives of the study was to investigate whether the general publics trust in the medical services would be affected if PAS were to be allowed. The method used was that of asking the respondents what they assumed would happen to their own trust. This does not answer the question of what in fact would happen to peoples trust if PAS were to be allowed, but rather what they believe would happen. Currently, this hypothetical scenario seems to be a reasonable way to study the issue. Another aim was to study the general publics attitudes towards PAS, given that certain criteria were met; possibly, other criteria would have resulted in other answers. The purpose of the short version of the questionnaire was to examine whether the original response pattern of non-responders regarding the main outcome differed from those who had answered the

Table II. Correlation between attitude towards physician-assisted suicide (PAS) and the reported influence on trust; proportions are shown with a 95% confidence interval (CI), and non-overlapping intervals indicate that if a hypothesis test had been conducted, p-values would have been <0.001. Trust would Attitudes towards PAS (n 583) Accepting (n 437) Doubtful (n 82) Negative (n 64) Not be influenced % (95% CI) 50 (4555) 37 (2747) 17 (826)

Decrease % (95% CI) 3 (15) 46 (3557) 75 (6486)

Increase % (95% CI) 47 (4252) 17 (925) 8 (115)

Table III. Respondents prioritization of arguments; the internal dropout rate was 7%; prioritization is displayed in relation to the response in terms of Yes (n 407), In doubt (n 148) or No (n 50) with regard to physician-assisted suicide (PAS). Arguments Respect for patient autonomy The aim is to minimize suffering, not to shorten the patients life The principle of autonomy should precede the principle of doing no harm The patient may resort to other, more painful methods of suicide The principle of non-maleficence should override the principle of autonomy Patients who perceive themselves as burdens may experience pressure to ask for PAS Patients in these situations do not know what is best for them Patients trust in physicians may be put at risk Own arguments Yes (%) 56 32 7 4 1 In doubt (%) 18 20 5 4 11 21 10 7 4 No (%) 34 30 20 12 4

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Would physician-assisted suicide jeopardize trust in the medical services? original one. We found a tendency for those answering the last version to be more in doubt. Being undecided might have been a possible reason for not participating in the study. The question is how this might influence the interpretation of trust in healthcare. When compared to the proponents of PAS, those in doubt are more likely to foresee a decrease of their trust; but when compared to the opponents, those in doubt are more likely not to be influenced. Accordingly, if we extrapolate these proportions to the group of non-responders, we may still expect that a great majority would increase their trust or at least not be influenced if PAS was to be legally accepted. When estimating the response pattern regarding the attitudes towards PAS, we included those responding to the short version of the questionnaire, thereby increasing the response rate by 7%. An explanation for the rather low response rate may be that the questionnaire clearly specified a list of six criteria for accepting or rejecting PAS; even though the criteria were listed in order to minimize the risk of misinterpretation, the questionnaire may have seemed difficult to answer. Furthermore, participants were selected from all over the county of Stockholm, including areas with many newly immigrated residents. Some of the non-respondents may thus have been unable to answer because of language problems. On the other hand, the population in the county of Stockholm generally has a higher level of education as compared to the national average, and is therefore not entirely representative. Summing up, the short version of the questionnaire not only increased the total response rate, but probably also promoted the responses from participants in doubt concerning PAS. Trust in the medical services Among physicians, a common argument against PAS is that it is believed to have a negative influence on patients trust in the medical services [6]. As reported in another study on physicians attitudes towards PAS, 48% stated as their belief that the populations trust in healthcare would decrease, 16% that it would increase, and 36% that it would not be influenced at all [6]. This can be compared to the populations actual belief (17% believed that their trust would decrease, 45% that their trust would increase, and 38% that their trust would not be influenced at all), which contrasts significantly with physicians estimations. Accordingly, there seems to be no support for the physicians assumption that allowing PAS under certain conditions would jeopardize the populations trust. Similar findings have been reported from the USA, where a majority of the general public disagrees

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with the claim that PAS would undermine trust in physicians [10]. We do not know what the results would become if PAS was actually legalized and the same questions were asked after legalization. In the Netherlands, public trust in healthcare was monitored between 1997 and 2004, but no specific trend was seen [7]. Unfortunately, we have found no other published results from either the Netherlands or the state of Oregon, from which such knowledge might have been available if surveys had been conducted. An interesting spin-off result was that those who reported their current trust to be low also stated that their trust would actually increase if PAS were to be legalized. One explanation for these results might be that people see physicians as representatives of potentially patronizing authorities who question patients capacity for self-determination, ideas that might result in decreased trust. This interpretation indicates that actions stressing patients autonomy would result in an increased trust in the medical services, and actions restraining patients autonomy would lead to decreased trust. In line with this reasoning, we might also note the fact that, as compared to the younger respondents, significantly more of the older respondents reported that their trust would increase if PAS was allowed. The older respondents are closer to the end of life, and as autonomy is gradually chipped away by illness and age, the prospect of PAS may be a comforting one, as it may secure the individuals sense of life.

Attitudes and arguments When compared to a recent study of physicians attitudes, significant differences between the attitudes of physicians and the general public are revealed; physicians take a more restrictive view of PAS (34% in favour, 25% in doubt, and 39% against) [6]. Similar results have been found in international research studies [1114]. The question is why the general public is much more accepting of PAS than physicians are. One possible explanation is that potential patients believe that their selfdetermination is at stake, and PAS may be a symbol of preserved autonomy even during severe illness, when the sense of control has been lost. It is likely that a patient would prefer to have the right to decide when the suffering physical and/or psychological is unbearable, or no quality of life remains. This explanation is in line with the fact that a majority of the participants in this study prioritized respect for patients autonomy as their main reason for accepting PAS. Those doubtful about or against PAS had a greater spread of priorities, not putting particular

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A. Lindblad et al. restraining patients autonomy and leading to decreased trust; we suggest that there should be further research regarding this hypothesis.

emphasis on any special argument, indicating that autonomy is not of prime importance to them. Another possible explanation for the difference between professional and popular attitudes towards PAS may be that, as compared to the general public, the physicians have more knowledge about palliative measures. However, confidence in the possibilities of palliative treatment may also turn into blindness, preventing physicians from seeing when patients have reached the end of their tether. In the Netherlands, physician-assisted death is practised in addition to high-quality end-of-life care such as continuous deep sedation. Requests for physician-assisted death often originate in existential suffering and physical deterioration, whereas sedation is requested for alleviation of physical suffering [15]. The number of physician-assisted deaths in the Netherlands has decreased slightly during the past few years, possibly reflecting a development of palliative measures [15]. However, euthanasia and PAS still account for 1.8% of all deaths in the Netherlands, indicating that there is nevertheless suffering related to terminal illness that cannot be sufficiently relieved by palliative measures. Another reason why physicians, as compared to the population, are more restrictive may be the burden of responsibility associated with PAS: some might find it difficult to decide whether the patient meets the given criteria, and thus fear to assist someone who could actually benefit from other treatment. Possibly, physicians also have a paternalistic view, not trusting patients to know what is best for them.

References
[1] Ponthus J. Luxembourg parliament adopts euthanasia law. 2008. Available at: http://in.reuters.com/article/worldNews/ idINIndia-32054520080220. [2] Burkhardt S, La Harpe R, Harding TW, Sobel J. Euthanasia and assisted suicide: comparison of legal aspects in Switzerland and other countries. Med Sci Law 2006; 46:28794. [3] Rietjens JA, van der Heide A, Onwuteaka-Philipsen BD, van der Maas PJ, van der Wal G. A comparison of attitudes towards end-of-life decisions: survey among the Dutch general public and physicians. Soc Sci Med 2005; 61:172332. [4] Dyer C. UK House of Lords rejects physician assisted suicide. BMJ 2006;332:1169. [5] Nys H. Physician assisted suicide in Belgian law. Eur J Health Law 2005;12:3941. [6] Lindblad A, Lofmark R, Lynoe N. Physician-assisted suicide a survey of attitudes among Swedish physicians. Scand J Public Health 2008;36:7207. [7] Van der Schee E, Groenewegen PP, Friele RD. Public trust in health care: a performance indicator? J Health Organ Manag 2006;20:46876. [8] Materstvedt LJ, Kaasa S. Euthanasia and physician-assisted suicide in Scandinavia with a conceptual suggestion regarding international research in relation to the phenomena. Palliat Med 2002;16:1732. [9] Statistiska, c. 2008. Available at: http://www.scb.se/ [10] Hall M, Trachtenberg F, Dugan E. The impact on patient trust of legalising physician aid in dying. J Med Ethics 2005;31:6937. [11] ONeill C, Feenan D, Hughes C, McAlister DA. Physician and family assisted suicide: results from a study of public attitudes in Britain. Soc Sci Med 2003;57:72131. [12] Pasterfield D, Wilkinson C, Finlay IG, Neal RD, Hulbert NJ. GPs views on changing the law on physician-assisted suicide and euthanasia, and willingness to prescribe or inject lethal drugs: a survey from Wales. Br J Gen Pract 2006;56:4502. [13] Ryynanen OP, Myllykangas M, Viren M, Heino H. Attitudes towards euthanasia among physicians, nurses and the general public in Finland. Public Health 2002;116:32231. [14] Kmietowicz Z. Doctors favour legalising assisted suicide for dying patients. BMJ 2004;329:939. [15] van der Heide A, Onwuteaka-Philipsen BD, Rurup ML, Buiting HM, van Delden JJ, Hanssen-de Wolf JE, et al. End-of-life practices in the Netherlands under the Euthanasia Act. N Engl J Med 2007;356:195765.

Conclusions The results of this survey indicate that there is no empirical support for the argument that PAS would have a negative influence on the general publics trust in the medical services; on the contrary, the majority of the respondents claim that their trust would not be influenced or would actually increase if PAS was allowed under the given criteria. The study also suggests a hypothesis that there might be a correlation between, on the one hand, actions stressing patients autonomy resulting in increased trust in the medical services, and on the other hand, actions

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