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When enough is enough; terminating life-sustaining treatment at the patient's request: a survey of attitudes among Swedish physicians and the general public
  1. Anna Lindblad1,
  2. Niklas Juth1,
  3. Carl Johan Fürst2,
  4. Niels Lynöe1
  1. 1LIME, Karolinska Institutet, Stockholm, Sweden
  2. 2Stockholms Sjukhem, Mariebergsgatan, Stockholm, Sweden
  1. Correspondence to Dr Anna Lindblad, Centre for Healthcare Ethics, LIME, Karolinska Institutet, Stockholm 171 77, Sweden; anna.lindblad{at}ki.se

Abstract

Objectives To explore attitudes and reasoning among Swedish physicians and the general public regarding the withdrawal of life-sustaining treatment at a competent patient's request.

Design A vignette-based postal questionnaire including 1202 randomly selected individuals in the county of Stockholm and 1200 randomly selected Swedish physicians with various specialities. The vignettes described patients requesting withdrawal of their life-sustaining treatment: (1) a 77-year-old woman on dialysis; (2) a 36-year-old man on dialysis; (3) a 34-year-old ventilator-dependent tetraplegic man. Responders were asked to classify the act of terminating treatment and to prioritise arguments for/against.

Results A majority in both groups prioritised arguments in favour of terminating treatment and classified the act as defensible in all vignettes. However, among the general public, 16% classified the act as euthanasia in all vignettes; among physicians this view was most expressed regarding ventilator treatment (26%). Some who classified the act as euthanasia prioritised arguments in favour of terminating treatment: among physicians 18% in vignette 1, 19% in vignette 2 and 34% in vignette 3; among the general public 35% in vignette 1, 20% in vignette 2 and 48% in vignette 3.

Conclusion There is a widespread consensus regarding competent patients' right to abstain from life-sustaining treatment. An association between the hastening of death, caused by the withdrawal of life-sustaining treatment and the concept of euthanasia is proposed. The results also suggest that classifying the withdrawal of life-sustaining treatment as ‘euthanasia’ does not necessarily mean that the act is interpreted as ethically unacceptable.

  • Care of the dying patient
  • mechanical/attitude/ethics
  • medical
  • prolongation of life and euthanasia
  • right to refuse treatment
  • suicide/assisted suicide
  • withholding treatment/euthanasia/dialysis/ventilators
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Modern medicine holds a range of life-sustaining treatments through which severely ill or injured patients may survive for years. However, these medical technologies also make it possible to prolong life beyond the point where it is far from obvious that continued survival is in the best interests of the patient. Although existing guidelines allow for terminating life-sustaining treatment in such circumstances, it may be psychologically difficult for physicians, who have been trained to preserve life, to forego life-sustaining treatment, as this most likely leads to the hastening of the patient's death.1–5

In Sweden, a competent patient has a legal right to refuse life-sustaining treatment and a physician may not give a treatment against a competent patient's will.1 If the patient's decision to decline or discontinue treatment may foreseeably lead to suffering, adequate palliation should be offered.3 Nevertheless, a recent case illustrates that patients in Sweden cannot be certain of having their wishes respected: A few years ago, a competent, ventilator-dependent tetraplegic man asked for the withdrawal of his ventilator treatment. The request was not granted, and the patient, supported by his family, travelled to Switzerland, where he died through physician-assisted suicide.6 This event was followed by a debate about patients' rights at the end of life in general, and the right to forego life-sustaining treatment in particular. It appeared that many understood the termination of ventilator treatment as euthanasia, which is forbidden in Sweden, and as being against the Swedish Medical Association's ethical guidelines. According to these guidelines, doctors are never allowed to participate actively in hastening a patient's death.7

These different ways of interpreting the withdrawal of life-sustaining treatment constituted the starting-point for the current study. Previous research on attitudes and reasoning towards the withdrawal of life-sustaining treatment in Sweden has generally focused on incompetent patients in hospital settings.8–11 We chose a less investigated angle, namely the withdrawal of life-sustaining treatment at the request of a competent patient. The aim was to elucidate attitudes and reasoning among physicians and the general population regarding the discontinuation of different types of life-sustaining treatments, with special focus on the following questions: how is the withdrawal of different types of life-sustaining treatment understood by physicians/the general public, and which arguments are considered most important?

Methods

The study was conducted in the autumn of 2007. A postal questionnaire was distributed to 1202 randomly selected individuals in the county of Stockholm and 1200 randomly selected Swedish physicians with six different specialities (200 in each): internal medicine; surgery; anaesthesiology; subspecialities of internal medicine; general practice and psychiatry. The selection of specialities was based on the likelihood of these physicians having experience of questions regarding end-of-life decision-making. Two reminders were distributed to non-responders. The questionnaire consisted of three vignettes, here presented in brief:

  1. A 77-year-old woman, who as a result of to type 2 diabetes and chronic renal insufficiency is dependent on dialysis three times a week. In recent months she has repeatedly expressed a wish to terminate the dialysis treatment. The woman is tired of life, but cognitively clear and not suffering from any mental illness.

  2. A 36-year-old man, who 5 years earlier attempted to commit suicide. He was saved without brain injuries, but as a result of a persistent chronic kidney disorder he is still dialysis dependent. Initially he also received psychiatric treatment. The patient is in line for a kidney transplant. During the past 6 months he has repeatedly expressed a wish to decline the kidney transplant and to terminate the dialysis treatment. A psychiatric examination does not reveal any mental illness.

  3. A 34-year-old competent man who is tetraplegic and ventilator dependent as the result of a car accident 5 years ago. There is no chance of improvement, but the patient may live for many years in his current state. During the past 6 months, the patient has repeatedly asked for the ventilator treatment to be discontinued. Neither the physician, who knows the patient well, nor a consulting psychiatrist regard the patient as clinically depressed.

Each vignette was followed by four identical statements; two in favour of terminating treatment and two against. Responders were also given the opportunity to state arguments of their own, as well as personal remarks. This article will explore which of the arguments the responders considered the most important and how the act of terminating treatment was classified: as a defensible act, assisted suicide, euthanasia, manslaughter or murder.

The data were registered and analysed using Epi 6 and Epi Info version 3.3.2 software. The present study was approved by the Regional Ethical Review Board in Stockholm (Dnr 2007/650-31/3).

Participants

Physicians

The total response rate was 57% (internists and surgeons 59%, respectively, anaesthesiologists 67%, subspecialists of internal medicine 53%, general practitioners 51% and psychiatrists 55%). There were no significant differences in attitudes, age or sex between early and late responders. Mean age was 53 years (ranging from 30 to 90 years). Male physicians were overrepresented, male/female 67/33%. A majority reported having high/rather high trust in the medical services (94%, CI 92 to 96).

General public

The total response rate was 48%. There were no significant differences in attitudes, age or sex between early and late responders. Mean age was 49 years (ranging from 19 to 86 years). The male/female ratio was 49/51%. A majority reported having high/rather high trust in the medical services (89%, CI 87 to 91).

Results

Main outcome

A majority of the responders in both groups classified the withdrawal of life-sustaining treatment as defensible in the three vignettes. However, approximately 16% of the general public interpreted the act as a type of euthanasia in all of the vignettes; among physicians this view was most expressed regarding the termination of ventilator treatment (26%), see table 1.

Table 1

A display of how the responders classified the termination of life-sustaining treatment in either vignette

Pro arguments were prioritised by a majority of the responders in both groups, see table 2.

Table 2

A display of how the arguments were prioritised by physicians and participants from the general public

Generally, those classifying the act as euthanasia also prioritised an argument against the withdrawal of treatment as the most important. However, there were also responders in both groups who perceived the act as euthanasia, but prioritised an argument in favour of terminating treatment. This was especially the case in vignette 3, see table 3.

Table 3

A presentation of the selection of physicians and responders from the general public who classified the withdrawal of life-sustaining treatment as euthanasia, and the type of arguments they prioritised as the most important

Background variables

Among physicians classifying the withdrawal of life-sustaining treatment as defensible, attitudes were associated with sex and speciality, see table 4. In vignette 1, significantly fewer psychiatrists and general practitioners classified the act as defensible compared with surgeons and anaesthesiologists. There was also a significant difference between psychiatrists and subspecialists of internal medicine. In vignette 2, there were significant differences in response pattern between male and female physicians, psychiatrists versus surgeons, anaesthesiologists and subspecialists of internal medicine and general practitioners versus anaesthesiologists. In vignette 3, the response pattern among physicians was not associated with sex, age or speciality.

Table 4

A display of the response pattern among physicians who classified the withdrawal of life-sustaining treatment as a defensible act

Among the physicians prioritising a pro argument, attitudes were correlated to age (<54 years vs >53 years), sex and speciality, see table 5. In vignette 1, fewer older physicians (>53 years) prioritised a pro argument compared with younger physicians (<54 years). Similarly, fewer psychiatrists and general practitioners prioritised a pro argument compared with surgeons, anaesthesiologists and subspecialists in internal medicine. There was also a significant difference between psychiatrists and internists. In vignette 2, fewer female physicians prioritised a pro argument compared with male colleagues, and fewer psychiatrists compared with surgeons, anaesthesiologists and subspecialists in internal medicine. In vignette 3, the response pattern among physicians was not associated with sex, age or speciality.

Table 5

A display of the response pattern among physicians prioritising an argument in favour of terminating life-sustaining treatment

The response pattern in the general public regarding the classification and prioritisation of pro arguments was not associated with sex or age (<49 years vs >48 years).

Responders' own arguments

The analysis of the arguments provided by the responders is based on pro arguments from approximately 69 different physicians and 68 different participants from the general public, and contra arguments from 123 different physicians and 77 different responders from the general public. Concerning the patients on dialysis in vignettes 1 and 2, the most common pro arguments focused on the patient's right to autonomy. Regarding the ventilator-treated patient, autonomy arguments were still frequent in both groups, but so also were arguments expressing empathy for the patient's situation and quality of life, that is ‘Lying there like a vegetable is no life’ and ‘A meaningless existence for a mentally sound person’.

Most of the contra arguments concerned vignettes 1 and 2, with doubts about the patient's decision-making competence (eg, suspected depression), the possibility that the patient may change his/her mind, alternative medical treatments (at hand or perhaps to be developed in the future), and in vignette 2, the patient's age being the commonest. In vignette 3, physicians stressed the possibility of the patient changing his mind, whereas the general public focused on the chances of improvement through the development of medical treatments.

Discussion

Validity aspects

To achieve the objectives of the study, we chose a vignette-based questionnaire, as it encourages participants to engage in ethical reasoning. The typical examples were designed to be easily understood, regardless of the responders' level of medical knowledge. However, the form was time consuming to fill out, which may have contributed to the somewhat low response rate. We found no significant differences in attitudes, age or sex between early and late responders, suggesting that a higher response rate would not significantly influence the response pattern.

We wanted to include some of the most frequently used arguments for/against the withdrawal of life-sustaining treatment in the questionnaire. In ethical discussions about this issue, the main arguments usually concern the right to autonomy versus the wrongness of killing. As the form became rather extensive, we reduced the number of pre-formulated arguments to leave room for responders' own arguments; a possibility that many made use of. However, another set of arguments could have given more information and possibly the selection of arguments directed the participants, thereby making them more likely to be singled out as important. That the withdrawal of treatment could be interpreted as euthanasia was used as a contra argument, although classifying an act as euthanasia does not necessarily imply that the act is considered morally wrong. However, the wording of the statement made it clear that, in this particular case, perceiving the act as euthanasia meant being against the termination of treatment. Moreover, respondents were allowed to classify the action as euthanasia in later questions, even if they prioritised a pro argument, as some did. Nevertheless, the wording of the statements may have influenced the participants' interpretations and responses. However, as it is the comparison of the cases that is in focus, the procedure might nevertheless be defensible. The alternatives for classification—a defensible act, assisted suicide, euthanasia, manslaughter, murder—were not explained, because they are widely used in public debate.

The group of physicians was randomly selected from all over Sweden. Male physicians were overrepresented (male/female 67/33%), also when compared with the demographic data of the average male/female ratio of physicians (male/female 60/40%).12 The age range of physicians (30–90 years) included 38 individuals over 67 years (pensionable age in Sweden). Whether these physicians were clinically active is unknown, but possibly some have continued to practice on a private basis. The representatives from the general public were randomly selected from the county of Stockholm, where Karolinska Institute is located. Geographical nearness can have a positive influence on the response rate, as many in the general public may have a relationship with the university, and therefore be more motivated to participate in the study. The balance of the sexes (49/51%) matched the demographic data of the average male/female ratio in the population in the county of Stockholm as well as in Sweden as a whole (49/51%, age group 18–100+ years).13 However, the population in the county of Stockholm is generally better educated compared with the national average, and therefore is not entirely representative. It could also be argued that people in major cities such as Stockholm are generally more liberal in their moral views; possibly, including representatives of the general public from a broader section of Sweden could have given more restrictive attitudes.

Factors influencing attitudes

In Sweden, a decision-competent patient has the right to refuse a life-sustaining treatment; however, not all participants recognised this right. For some, this may be because they mistakenly conceived the act as criminal (eg, euthanasia, manslaughter, murder). Others may have inferred that the patients in the vignettes were not competent due to psychiatric illness and that their requests should therefore not be respected. This may be the case especially in vignette 2, in which the patient had a history of depression. Such an interpretation is compatible with generally recognising the right of competent patients to forego life-sustaining treatments. Responders using a broad definition of suicide could also have understood the request for termination of the life-sustaining treatment as suicidal behaviour.14–16

The vignettes were appraised differently by physicians and the general public, but also by responders within the same group. This may be explained by the ethically relevant factors varied in the vignettes (ie, type of treatment, patients' age and competence), but also by background variables such as age, sex and speciality.

Type of life-sustaining treatment

Previous research has indicated that physicians have preferences regarding what type of life-sustaining treatment to withdraw; when asked to rank their preferences for the withdrawal of different treatments, haemodialysis was chosen before mechanical ventilation.17 18 A similar preference may explain why more physicians perceived the termination of dialysis in vignettes 1 and 2 as a defensible act, compared with the withdrawal of ventilator treatment in vignette 3. Why may the type of treatment to be withdrawn affect physicians' attitudes? A possible hypothesis is that death is imminent when terminating mechanical ventilation, as opposed to terminating dialysis. Also, dialysis may be terminated by the patient alone, simply by not showing up at the dialysis department. Withdrawing the ventilator treatment is different; to do so will cause severe foreseeable suffering in terms of suffocation, and therefore palliative measures such as sedation must be initiated even before symptoms arise—thereby requiring a physician's active involvement. Therefore, it may feel as if it is oneself as the physician, rather than the patient's condition, that is the direct cause of shortening the patient's life. As the Swedish Medical Association's ethical guidelines forbid doctors to participate actively in hastening a patient's death, the termination of ventilator treatment could be understood as being contrary to these guidelines.7 No matter how natural such feelings are, it is difficult to see the moral relevance of the time frame or the use of palliative sedation itself. As it is also difficult to see any other differences between terminating ventilation and dialysis that could be relevant for judging the one as more ethically defensible than the other, more exploration into the motivations underlying the differing judgements is needed in order to answer the question.

Contrary to physicians' reports, the response pattern among the general public does not suggest that the type of life-sustaining treatment is of importance. The proportion of the general public interpreting the withdrawal of life-sustaining treatment as euthanasia was constant in all three cases. Significantly fewer from the general public categorised vignette 2 as a defensible act compared with vignettes 1 and 3, indicating that attitudes are influenced by factors other than merely the type of life-sustaining treatment. This hypothesis finds some support in a study by Singer et al,19 in which end-of-life practice had only a moderate effect on the public's opinion towards end-of-life decisions.

Patient characteristics

It is likely that patient characteristics such as age, prognosis and competence influenced the attitudes. Significantly more physicians considered the withdrawal of dialysis in vignette 1 to be a defensible act compared with the other vignettes. In vignette 1 the patient was older, competent and capable of independently formulating her will. Although tired of life, she was not regarded as depressed. The patient was not a candidate for a kidney transplant and the dialysis treatment was therefore lifelong. The idea of patient characteristics affecting physicians' attitudes is supported by a Swedish study, in which the most important factors considered in the decision to withdraw life support in intensive care units were found to be the patient's likelihood to survive the current episode, patient advance directive, patient age and the likelihood of long-time survival.11

Why did fewer responders classify the termination of treatment in vignette 2 as a defensible act compared with the other scenarios? The analysis is complicated by the fact that the patient differed from the others in several ways. First, the history of depression created doubt regarding the patient's competence. Second, as a candidate for a kidney transplant, the prognosis was better than in the other vignettes. Third, the patient was much younger than the one in vignette 1. The arguments against the termination of dialysis in vignette 2 provided by the responders include: doubt regarding the patient's competence, young age, the risk of the patient changing his mind and the possibility of alternative medical treatments. However, the material does not allow us to determine whether these factors influenced attitudes.

That prognosis might be of importance is suggested by Singer et al,19 who found that patient prognosis had a major effect on the public's opinion towards end-of-life decisions. However, according to Singer et al19 the decision-making process only had a minor effect on the public's attitudes, a result that cannot be validated in the present study.

Background variables

Whereas age and sex were generally insignificant within the general public, they tended to influence physicians' responses. There was also an association between physicians' attitudes and the type of speciality. Psychiatrists classified termination of dialysis as defensible—or prioritised arguments in favour of this—less often compared with other specialities. A possible explanation may be that attitudes are influenced by previous experience of terminal care. Psychiatrists are fairly seldom directly involved in end-of-life decision-making. This hypothesis is supported by a large European study, according to which physicians who attended more than five terminal patients during 1 year agreed more with the duty to comply with a patient's request to withhold/withdraw a life-sustaining treatment than physicians who had attended fewer terminally ill patients.20 However, this does not explain why psychiatrists were more hesitant than physicians from other specialities in vignettes 1 and 2, but not regarding the ventilator-dependent patient in vignette 3. Nor is it a plausible explanation for why general practitioners—who are often involved in the care of chronically ill and/or dying patients—less often classified termination of dialysis as defensible, or prioritised arguments in favour of this, compared with other specialities. Possibly, differences in the care relationship between physician and patient may be of importance here; in general medicine and psychiatry it may be more common with long-term relationships compared with the other specialities included in the study. A more long-term relationship may influence the decision-making process, making it harder for the physician to accept a termination of life-sustaining treatment.

Hastening death and euthanasia

The statement that the withdrawal of treatment could be interpreted as euthanasia was used as a contra argument. Nevertheless, there were responders in both groups who classified the act as euthanasia, but still prioritised an argument in favour of terminating the treatment as the most important. This suggests that even a value-charged label such as ‘euthanasia’ does not necessarily mean the act being found ethically unacceptable. However, the result could also indicate that many responders are unaware of how euthanasia is usually defined in the medical field, that is as a doctor intentionally killing a person by the administration of drugs, at that person's voluntary and competent request.21 The fact that some responders in both groups classified the withdrawal of life-sustaining treatment as euthanasia in all three cases also suggests an association between the hastening of death, caused by the withdrawal of life-sustaining treatment, and the concept of euthanasia. The idea of an unawareness of how euthanasia is defined is supported by results from a Canadian study, in which opinions towards euthanasia differed significantly depending on the wording of the question.22 The implications of this explanation not only touch on the design of future studies, but also illustrate the need for clarity in public debate. With a unitary terminology, the misunderstandings frequently occurring in current discussions about end-of-life decisions may be prevented, thus enabling a constructive ethical discussion of the questions.

Conclusion

There is a widespread consensus among physicians and the general public regarding decision-competent patients' right to abstain from life-sustaining treatment. However, some responders in both groups classified the withdrawal of life-sustaining treatment as euthanasia, thus proposing an association between the hastening of death, caused by the withdrawal of life-sustaining treatment, and the concept of euthanasia. Some of those who classified the act as euthanasia also prioritised an argument in favour of terminating the treatment as the most important. This suggests that even a value-charged label such as ‘euthanasia’ does not necessarily mean the act being found ethically unacceptable.

The results also indicate that attitudes are influenced by factors such as the type of treatment to be withdrawn, patients' characteristics and to some degree also by background variables such as age, sex and medical speciality; however, these issues need further exploration, especially regarding their possible significance for the decision-making process in real-life clinical situations.

References

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Footnotes

  • Funding This study was funded by the Swedish National Board of Health and Welfare, Socialstyrelsen, 106 30 Stockholm, Sweden.

  • Competing interests None.

  • Ethics approval This study was conducted with the approval of the the Regional Ethical Review Board in Stockholm.

  • Provenance and peer review Not commissioned; externally peer reviewed.

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