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Right to refuse treatment in Turkey: a diagnosis and a slightly less than modest proposal for reform
  1. Nurbay Irmak
  1. Correspondence to Dr Nurbay Irmak, Department of Philosophy, Bogazici University, Bebek Istanbul 34342, Turkey; nurbayirmak{at}gmail.com

Abstract

This paper examines the current state of right to refuse medical treatment in Turkey. Even though there are only a few studies carried out with Turkish physicians on their attitude towards the right to refuse treatment, I argue that recent studies on physicians’ views on informed consent and honest disclosure show that Turkish physicians do not tend to recognise their patients’ right to decline treatment. This is because the refusal of treatment crucially requires that patients be properly informed and asked for their consent before the treatment. Turkish physicians and healthcare providers’ tendency to ignore the right to decline medical treatment cannot be separated from their paternalistic approach to patients and their rights. I argue that part of the problem is the legal framework, which, in essence, is still paternalistic. More specifically, the frequent appearance of the phrase ‘medical necessity’ in the relevant legislation is conveniently used to justify medical intervention against a patient's will. I conclude the paper by proposing reforms in the legal documents defining and regulating patient rights, including the Constitution of the Turkish Republic, and I will argue that these reforms will help enhance patient rights in Turkey. Turkey has been discussing a new Constitution for the past several years, so my proposal should best be understood as contributing to public discussion of the new Constitution by initiating debate about medical paternalism and patient autonomy in Turkish medicine.

  • Right to Refuse Treatment
  • Paternalism
  • Rights
  • Autonomy
  • Regulation

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Right to refuse medical treatment is recognised as an essential patient right. In this paper, I will examine the status of this specific right in Turkey. Turkey, given its geographical and cultural context, presents an interesting case for the discussion of patient rights and the right to refuse treatment, in particular, since if one looks at the evolution of patient rights and the legal framework that regulates physician–patient relationship, one can see that there are, on the one hand, serious efforts both legally and practically to improve and institutionalise patient rights, which place Turkey closer to Western societies, but, on the other hand, the progress is very slow and, more importantly, there is some significant resistance to recognise patient autonomy, which is partly grounded in the predominant culture in Turkish medicine and the values of Turkish society. Current research on Turkish patients and physicians shows that, despite the efforts of the Ministry of Health, Turkish Medical Association and various non-governmental organisations, medical paternalism is still prevalent and a serious obstacle for any progress towards the recognition and practice of patient rights in Turkey.1–3 I will argue that part of the problem is the legal framework, which, in essence, is still paternalistic. More specifically, the frequent appearance of the phrase ‘medical necessity’ in the relevant legislation is conveniently used to justify medical intervention against a patient's will. I conclude the paper by proposing reforms in the legal documents defining and regulating patient rights, including the Constitution of the Turkish Republic, and I will argue that these reforms will help enhance patient rights in Turkey. Turkey has been discussing a new Constitution for the past several years; my proposal should best be understood not merely as redacting some legal documents but as contributing to public discussion of the new Constitution by initiating debate about medical paternalism and patient autonomy in Turkish medicine.

I begin with a discussion on the moral status of right to refuse medical treatment. Then I look at actual medical practice in Turkey to consider how healthcare providers and patients perceive the right to refuse treatment. After examining the legal foundation of patient rights and the right to decline treatment, I discuss how the current situation can be improved by proposing a reform of the relevant legislation.

Refusing medical treatment is a right

The main moral ground for the right to refuse treatment is the principle of respect for autonomy, according to which, in the medical context, the patient has autonomy of thought and action when making decisions about the patient's health or overall bodily integrity and physician should comply with the wishes of a competent patient. There are cases in which patients might choose to refuse a recommended treatment even though this refusal may mean their life expectancy is significantly shortened. For example, some patients with cancer in advanced stages of their illness decline any medical treatment and only consent to palliative care.i Although the principle of respect for autonomy is the primary justificatory premise for the right to refuse treatment, it would be a mistake to think that it is the only one. The principle of beneficence might also provide theoretical support for recognising right to refuse treatment. According to the principle of beneficence in biomedicine, physicians have a duty to provide benefits such as good health to their patients and to prevent or to reduce harm. What constitutes harm or benefit to the patient, however, is partly determined by the values, assessments or choices of the patient. The main reason for this is that what benefits the patient or what is in the patient's best interest depends to some extent on the patient's values and interests in life. In this regard a competent patient is in a unique epistemological and moral position when making medical decisions about one's own health. It is a unique position since the patients have a privileged access to their own values, priorities and preferences, which inform their decision about what is best for them. Even if we agree on some objective list of benefits and harms, different individuals might order or prioritise the items in the list differently. Perhaps most patients value a prolonged life, regardless of the quality of their remaining time. However, it would be wrong to assume that every patient would prefer a longer life, when this is only possible if the patients were willing to spend their remaining days in a hospital bed, living a life that is nothing like their expectations, values and preferences. Therefore, physicians cannot simply act on the premise that the principle of beneficence necessarily implies prolonging life of their patients, because the patient might have a different ordering of values and preferences.ii

Physicians in Turkey and the right to refuse treatment

Medical paternalism can be defined as overriding, restricting or interfering with patient's’ freedom, autonomy or decision for their own well-being. Paternalism is still quite prevalent among healthcare providers in Turkey. There are various manifestations of Turkish physicians' paternalistic relations with patients, but their resistance to recognise the right to refuse medical treatment highlights the importance of efforts to change their attitude towards this particular right in order to counteract and, eventually, to overcome medical paternalism in Turkey.

One might think that, because there is no large number of cases reported in Turkey where the patients are treated against their will, the above claim about Turkish physicians' dismissal of the right to refuse treatment is either false or even if true it is insufficiently important to address it, in view of the size and the number of other significant issues in Turkish medical practice, such as difficulties of obtaining informed consent, problems about truth-telling or the absurdly limited time allocated for examining individual patients and so forth.iii How, it might be asked, can physicians force their cancer patients to accept chemotherapy? I take this concern very seriously, so I begin with the first part of the claim by discussing briefly some of the recent studies that document Turkish physicians' views about the right to refuse treatment and then support the second part of the claim by arguing that physicians employ various methods, ranging from concealing truth to outright coercion, to evade or dismiss their patients' right to decline treatment.iv

Only a few studies directly address the question, how Turkish physicians view the right to refuse medical treatment. There are two cases I want to examine briefly. The first is reported by Sert and Guven where an old woman suffering from a disease that significantly diminishes her ability to use her limbs and therefore makes her extremely dependent on others, fell badly in an attempt to reach her bathroom and was taken to a hospital.1 She was forced to accept two tests (ECG and creatine kinase-MB) against her will. Her experience in the hospital was so very unacceptable to her that the next time something like this happens, she told her daughter, she would not call for help. She demanded to use her right to reject life-saving treatment and was only willing to accept palliative care; her clear and expressed demands were repeatedly ignored by her attending physicians. This case clearly illustrates the unwillingness of her physicians to accept her right to refuse medical treatment. The second case, reported by Ersoy, concerns a 72-year-old male farmer who had been suffering from colon cancer, who was not informed about what kind of treatment his doctors were planning.8 Without his consent they performed colostomy, leaving him with a hole in his abdomen. Shocked and frustrated by this invasive surgery he asked his surgeons how they could operate on him without his permission. Not expecting a reaction from their patient, the doctors explained to him that they informed his son about the procedure, to which he responded in anger, “Who was to be operated on and have a hole in his abdomen? Is it me or my son? How dare you perform that without asking me? I will sue all of you!” The practice of obtaining consent from relatives although the patients are competent and able to make a decision on their own is quite common in Turkish medicine.9 Examples like this demonstrate the paternalistic attitude of Turkish physicians, especially when they think the patient is unable to make the ‘right’ decision.

One might think that even if such individual cases are informative, in the absence of more compelling evidence, it is not warranted to claim that Turkish physicians do not recognise the patient's right to decline treatment. I argue that by looking at recent studies regarding Turkish physicians' views on informed consent and honest disclosure, we can make a very credible inference about how they perceive the right to refuse treatment. This inference is grounded on the fact that in order for the patients to refuse or accept a proposed treatment, they first need to be properly informed and asked for their consent. Thus, patients can exercise their right to refuse treatment, only if informed consent and truth-telling are institutionally well-established practices in medicine. Recent studies indicate, to the contrary, that despite significant improvements achieved as a consequence of legal and institutional efforts in the past 15 years, as concerns patient rights, healthcare practice in Turkey is still struggling against a pervasive paternalistic approach to informed consent and truth-telling (accurate and complete disclosure).

One study conducted in 2001 with 128 patients staying on the medical and surgical wards at a state hospital in Ankara reveals that 38% did not know their own diagnosis and, among all surgery patients, 68% were not informed about the type of medical procedure they underwent.10 Another study conducted with 240 physicians working at a university hospital in Izmir found out that 47.8% of the participants said it was necessary to take informed consent in all cases, whereas 51.3% said informed consent is only necessary for surgical operations.2

Studies about truth-telling are more revealing. One such study was conducted in 2006 with 131 cancer specialists. The striking result was that the percentages of the physicians who never, rarely, generally or always prefer to disclose the full truth about their patients' diagnosis were, respectively, 9%, 39%, 45% and 7%.11 Thus, nearly half the physicians who participated in this study conceded that they either never or only rarely tell their patients the full truth about their diagnosis or prognosis. If concealing truth from patients is still so prevalent in Turkey, then it is simply not credible to think that the majority of Turkish physicians respect and follow the requirements of informed consent. In the absence of informed consent, there can be no effective patient right to refuse treatment, as this right crucially depends on being properly informed and requested to make a decision regarding the proposed treatment.

These studies support my first claim that the right to refuse treatment is not commonly recognised by Turkish physicians and healthcare providers. Turning now to the second part of my above claim, even if true, its significance remains unclear. More specifically, it may be unclear how physicians can coerce their patient to submit to a proposed medical treatment. If patients are not willing to accept the treatment, for example, chemotherapy, cannot they simply ignore their physician's recommendation and not show up for the following treatment sessions? Even if this were true for non-surgical treatments, which I argue it is not, for life-saving urgent surgical treatments, like the second case mentioned above, physicians are in a position to coerce patients to accept treatment or simply they do not ask for their permission and operate on the patient. Ignoring patients' right to refuse treatment can take various forms, from subtle methods of persuasion to deception or even outright coercion. As some of the studies cited above demonstrate, a significant number of physicians in Turkey do not feel obligated to inform their patients about their disease or the proposed treatment. These same studies clearly show that properly informed consent is not yet instituted within Turkish healthcare. Since accurate and full disclosure is not yet the norm in Turkish medicine, physicians see little moral problem with manipulating their patients into accepting treatment. According to a study conducted in 1994 with 118 physicians, 61% of the participating physicians claimed that the physicians always know what is the best decision for their patients.3 An even a larger number of those physicians, over 65%, admitted that when there is disagreement with their patients, they use pressure, fear and even coercion to convince the patient. These participating physicians reported that sometimes they do not even inform the patient about the procedure. Granted, the study belongs to a period prior to implementation of major regulations governing patient rights by the Turkish Ministry of Health in 1998.12 Nevertheless, it still illustrates some of the ways in which physicians can ignore their patients' right to refuse treatment.

The legal framework governing patient rights in Turkey

The first comprehensive legislation defining patient rights in Turkey is the Regulation on Patient Rights, introduced into the Turkish healthcare system in 1998. The legislation was prepared and enforced by the Turkish Ministry of Health and complied to some degree with international regulations on patient rights.v To improve implementation of that legislation, in 2003, the Ministry of Health published the Patients' Rights Implementation Directive, with a revised edition in 2005.14 Both regulations define fundamental patient rights, including informed consent, privacy, basic access to healthcare and so forth. The patient's right to refuse or to withdraw from treatment is also defined in these regulations. However, I shall argue that current legislation is far from clear or consistent regarding the right to refuse life-saving treatment. Article 25 defines the right to refuse or withdraw from treatment as follows:Except in cases mandated by law and given that the patient is willing to take responsibility for the negative consequences, the patient has a right to refuse and demand withdrawal of planned or ongoing treatment. Under these conditions, the patients, or their legal representatives, or their relatives should be informed about the possible consequences of withdrawal of treatment and a written document explaining the situation should be acquired.12

This article appears adequately to recognise the right to refuse treatment. However, this apparent clarity vanishes when one considers a fundamental principle undergirding the regulation. These principles are stated in Article 5 and introduced with this instruction: “The following principles must be followed in the utilization of health care services”. Article 5d is relevant to our present discussion, which states as follows:Except in medically necessary cases and cases mandated by law, without the consent of the individual their bodily integrity and other personal rights are inviolable.12

The crucial point here is the exception made for medical necessity. Now the phrase ‘medical necessity’ is open to widely different interpretations. However, in cases where the patients demand using their right to reject a life-saving treatment, the article provides strong legal prerogative to any physician who disregards, evades or dismisses that right. A particular life-saving treatment, for example chemotherapy, is the physician's prescription in response to a medical necessity. The patient's right to refuse life-saving treatment is exactly the right to reject a medically necessary intervention. Because this article is expressly introduced as one of the fundamental principles undergirding the regulations as a whole, it would follow that in cases where they conflict, the fundamental principle trumps any particular, subsidiary article, such as Article 25, which defines the patient's right to refuse medical treatment.

More importantly, Article 5d is grounded on Article 17 of the Constitution of the Republic of Turkey (1982), which states that, “the corporal integrity of the individual shall not be violated except under medical necessity and in cases prescribed by law”.15 Therefore, the real source of this tension lies in the Constitution, and the Constitution itself provides substantive, material legal justification for medical paternalism regarding the patient's right to refuse medical treatment in Turkey.vi

Conclusion

I argued that a significant proportion of Turkish physicians don't recognise the patient's right to refuse medical treatment. Their attitude is not restricted to this particular right; Turkish medical practice in general is quite paternalistic. Therefore, any step towards instituting an effective patient's right to refuse treatment, therefore, must substantially alter physicians' paternalistic perception and attitude—because overcoming paternalism requires accepting patient rights, especially the right to refuse treatment and, more importantly, because whenever physicians follows their patient's request not to be treated, the physician is required to concede and respect that (a) the patients have autonomy over their body and a final say about their medical decisions, (b) the physician does not necessarily know what is best for the patient and (c) that regardless of expert physician knowledge, the competent patient must assess and decide the appropriate use of that medical expertise.

In the past 20 years Turkish medical practice has significantly improved its institutional mechanisms to ensure and improve proper implementation of patient rights. Some changes made in the Regulation on Patient Rights in 2014 should be regarded as improvements upon the previous version in many respects. These revisions further clarify certain crucial concepts such as ‘consent’, ‘competence’ and ‘medical intervention’ (Article 2), the procedures for acquiring informed consent (Article 24) and emphasise that information should be disclosed to the patient, unless she explicitly designates someone else for this purpose (Article 18).18 More specifically, Article 24 in the previous version of the Regulation severely limited the right to withdraw critical medical treatment. According to that provision, a patient could withdraw a treatment that had already been initiated only on condition that there are no medical drawbacks.vii That condition has been removed from the Regulation with the recent revisions in 2014. Its removal demonstrates genuine effort to improve patient rights in Turkey, in particular the rights to refuse or withdraw treatment. I have argued, however, that these efforts are not yet sufficient, because the tension noted above between some of the articles within the Regulation and its underlying provisions within the Constitution shows that further improvement in Turkish legislation regulating patient rights is still required. In particular, Article 5 must be revised so as to avoid paternalistic interpretations. This can be accomplished by removing the indeterminate and thus problematic notion ‘medical necessity’. Removing or properly specifying Article 5, however, first requires that Article 17 of the Constitution is revised accordingly. This makes my proposal rather less than modest, yet because Turkey has been debating a new Constitution for several years, this proposal is nevertheless timely.19 My present point is not simply about redacting a legal document, but is also concerned to open an explicit discussion of one of the fundamental principles of that Regulation, the Constitution and its underlying paternalism. I do not wish to suggest that my proposed revision would solve all problems about the patient's right to refuse treatment or about paternalism in Turkey; it cannot. However, this step is important, because it is one of the most important legal documents defining patient rights. Thus the revision proposed here would have important implications for the medical practice in Turkey.

Acknowledgments

I would like to thank Kenneth R. Westphal and two reviewers of the Journal of Medical Ethics for their valuable comments and suggestions.

References

Footnotes

  • Funding The Scientific and Technological Research Council of Turkey (114C130).

  • Competing interests None declared.

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

  • i For such examples, see van Kleffens and van Leeuwen.4

  • ii For a similar line of argument, see Macklin.5

  • iii For a discussion on some of these issues in Turkish medicine, see Aydin.6

  • iv I leave aside two extraordinary cases where physicians are legally obliged to treat their patients even against their will. The first are cases where the patient, if untreated, poses a threat to public health. The second more controversial cases concern hunger strikes and duties of attending physicians (see Irmak,7 for a discussion on this matter).

  • v For a comparative evaluation of the legislation with different examples from the world see Ş. Görkey.13

  • vi It should be noted that the Regulation has a provision that forbids euthanasia (Article 13). One might think that prohibition on euthanasia places further barriers on the right to refuse medical treatment. As a response, although I agree that euthanasia and right to refuse life-saving treatment are deeply connected issues, I do think that they are separate enough to have different legislations on them as we see examples in countries like the US and the UK.16 Due to the limited space I will not be able to discuss the matter here but for a comprehensive examination of this question see Lowe.17

  • vii For a similar discussion of this provision see Sert and Guven.1