This paper examines the ethico-legal problems regarding the right to refuse treatment in Turkey's healthcare system. We discuss these problems in the light of a recent case that was directly reported to us. We first summarise the experience of a chronically dependent patient (as recounted by her daughter) and her family during their efforts to refuse treatment and receive palliative care only. This is followed by a summary of the legal framework governing the limits of the right to refuse treatment in Turkey. With the help of this background information on the legal framework, we re-examine the ethico-legal aspects of the case and explain the underlying reasons for the problems the family and the patient experienced. Finally, we conclude that Turkey's legal framework relating to the right to refuse treatment needs to be clarified and amended in accordance with international conventions and fundamental human rights.
- Right to Refuse Treatment
- Elderly and Terminally Ill
- Legal Aspects
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Turkey has been going through a transitional period in the implementation of a patient-autonomy-based approach in healthcare. The beginning of this period can be traced back to the Regulation on Patient Rights of the Ministry of Health issued in 1998. However, concrete steps for the implementation of patient rights in practice, such as widespread efforts to popularise the ‘right to choose a physician’ and establishing patient rights units in healthcare institutions, have been taken more recently.1
Despite these changes, the paternalistic tradition is still strong in Turkey and its influence on certain issues, such as truthful disclosure to patients with cancer2 and the right to refuse treatment, is yet to be challenged.
A letter: a chronically dependent and competent patient refusing treatment in Turkey
A woman (let us call her D) living in France contacted us by email after reading our article on the status of advance directives in Turkey.1 Here is what she said in her own words: (the name of the healthcare institution has been left out; we have added explanations within parentheses to clarify the terms).
“I was born and raised in A (Turkey) but now live in France. My mother and brother live in City X. My mother has been in … Hospital in City X (Turkey) [for many years]. Unfortunately, incontinence and a very limited use of her limbs make her extremely dependent. As she is very willful and independent by nature, her physical state causes her great frustration and distress.
Last week she fell in an attempt to reach her bathroom unaided, and although this time she got away with only bad bruises, she had to accept 2 ECGs (electrocardiograms) and one CK-MB (creatine kinase myocardial band fraction) test, against her choice. This was when she told me with unbearable pleading, helplessness and pain in her eyes, that she desperately hoped to have the courage not to call for help next time she would have an incident. But of course, even if she succeeded in not calling for help, this would not preclude any life sustaining action when they found her, which is exactly what she does not want.
What should we (my mother, my brother and I) do to help her establish Advance Directives that would help the hospital to respect her wishes for palliative and comfort care only? How does one go about establishing a legally binding “Living Will” in Turkey?”i
D's family attempted to construct a living will for D's mother but were unsuccessful.
Below is a more detailed examination of the legal and ethical aspects of this problem, followed by our conclusions and recommendations for avoiding similar problems of patient rights in Turkey.
Legal framework of the right to refuse treatment in Turkey
A detailed examination of the legal status of the right to refuse treatment in Turkey is beyond the scope of this article. However, to be able to examine some of the ethico-legal aspects of the case in Turkey, one first needs to understand the basic legal framework of this right in that country. For this purpose, the examination will be carried out at five different levels, each serving directly or indirectly as the source of the right to refuse treatment in Turkish medical law.
Article 17, paragraph 2 of the 1982 Constitution of the Republic of Turkey states that ‘the physical integrity of the individual shall not be violated except under medical necessity and in cases prescribed by law; and shall not be subjected to scientific or medical experiments without his or her consent’3 and it thus prohibits any violation of the bodily integrity of the individual without her consent. However, interpretation of the scope of this article by authors in the Turkish legal doctrine differs. Some authors accept that this article recognises the right to refuse treatment in general,4 ,5 while others assert that conditions where the practice of this right might lead to the death of the individual are also included within the scope of this article.6 We, on the other hand, consider the reference to the concept of ‘medical necessity’ in the article as a very problematic statement open to a paternalistic interpretation; the fact that this concept is not explained in the article further complicates the issue.
Turkey signed the Oviedo Convention on Human Rights and Biomedicine in 1997 and ratified it in 2004. This entered into force in the same year. In chapter ii (entitled ‘Consent’), Article 5 indirectly defines the right to refuse treatment and explicitly states that ‘the person concerned may freely withdraw consent at any time’. As argued elsewhere,1 article 9 of the same convention also has implications for the right to refuse treatment, and as a country that ratified the convention in question, Turkey has a clear obligation to arrange its legal framework for the right to refuse treatment accordingly. Unfortunately, Turkey's current healthcare legislation does not appear to be entirely compatible with the principles outlined in the aforementioned articles of the convention, as demonstrated below.
There are no specific statements about the right to refuse treatment in private law; the issue is usually examined through general provisions and particularly within the scope of the Civil Code's Article 23, which protects the personal rights of the individual and states that such rights are indefeasible. While there appears to be a consensus that the right to life and bodily integrity and its indefeasible status are recognised in Article 23, whether the refusal of life-saving treatment is against the provisions in this article is open to debate. Because the right to life is a personal right of the individual, some would argue that it is indefeasible; it cannot be waived. Some authors defending this thesis would assert that the life and the bodily integrity of the individual is under protection against the individual's own acts as well,7 ,8 and others assert that the individual has the duty to protect her bodily integrity.4 ,9 On the other hand, authors who argue against this thesis think that the right to self-determination has an over-riding status and that the right to refuse treatment should be recognised even when such a decision might lead to the death of the individual.6
In addition, at least one author refers to the Article 5 of the Oviedo Convention, noting that this article does not place any limits on the use of the right to refuse treatment and that it implies no exceptions for situations where the individual might die as result of using this right.10
On the other hand, it should also be noted that the prohibition of the approval of any document that involves ‘the right to life’ of any individual is consistent with the content of Article 23 of the Civil Code mentioned above. Therefore, this article's content probably lies at the heart of the problem that arose during the family's attempts to state the patient's wishes in a ‘living will’ formalised by a notary.
The essential role of consent for ensuring the lawfulness of medical intervention is a well-established topic in Turkish criminal law. However, it is not clear whether the right to refuse treatment (particularly where such refusal might cause the death of the individual) is synonymous with waiving the right to live. Some authors in the Turkish legal doctrine claim that it is and thus they assert that the right to refuse treatment in such a context cannot be defended.11 From this perspective, the healthcare professional would be criminally liable if accepting the right to refuse treatment resulted in the death of the patient.11 However, some authors reject this approach and insist that there is a difference between these two; because the patient who refuses treatment does not say ‘kill me’, she says ‘do not treat me’.5 ,12
The Regulation on Patient Rights
This regulation is the only document that openly refers to the right to refuse treatment. Unfortunately, its provisions are inconsistent and problematic, as already examined in our previously mentioned paper.1 One article of the regulation (Article 25) clearly recognises the right, whereas another (Article 24) provides serious limitations.13 In this latter article, the final sentence states that in the case of an already initiated treatment, consent can be withdrawn on condition that no ‘medical drawbacks’ exist, whereas the penultimate sentence states that consent can always be withdrawn except for situations where ‘emergency situations threatening the life or one of the vital organs (of the patient)’ exist. Furthermore, Article 13, which opens with the statement ‘Euthanasia is forbidden’ also states that the right to life cannot be waived for medical or other reasons.13
Owing to the problematic statements listed above, the limits of the right to refuse treatment appear to be rather poorly defined in the Regulation on Patient Rights and the limits implied are clearly incompatible with aforementioned Article 5 of the Oviedo Convention, which states that ‘the person concerned may freely withdraw consent at any time’. It should be noted, however, that the problematic provisions of this regulation cannot be amended within the current legal framework of the right to refuse treatment. Because, despite the historical and social significance of the regulation for the concept of patient rights in Turkey, its normative status in the hierarchy of norms of Turkish law is rather low; the regulation is a document issued by the Ministry of Health (and not by parliament) to provide an administrative framework within which healthcare service can be regulated in accordance with patient rights. This means that the provisions of higher norms (such as the Constitution, the Civil Code, the Penal Code) have to be clarified accordingly before the regulation can be amended. This would also apply to the prohibition regarding the approval by notaries of any documents concerning the right to life.
Ethical and legal issues
The first and probably the most problematic ethical issue of the case is the paternalistic response by hospital staff to the refusal of investigations by D’s mother when no guarantee could be obtained that her refusal would be respected. This paternalistic attitude is also a legal issue: there is no clear legal basis for violating the bodily integrity of patients against their will in Turkey. Unfortunately, in the absence of clear definitions and guidelines about the right to refuse treatment, paternalistic intervention becomes implicitly justified. The situation is further complicated by the presence of provisions (such as those in the Regulation on Patient Rights) where emergency situations are counted among the exceptional situations for which informed consent of the patient is not considered necessary for medical intervention. Such provisions are probably intended to facilitate life-saving interventions in emergency room services. Unfortunately, these provisions are also prone to a paternalistic interpretation in Turkey. Combined with the vague situation of the issue in Turkish criminal law summarised above, it is not hard to see why healthcare professionals might prefer to err on the side of caution and try to avoid irreversible consequences, such as death.
Another important issue that needs to be considered in these kinds of cases is that health professionals in Turkey often do not seem to make a distinction between ‘end-of-life care’ and the use of invasive treatments and heroic measures (‘doing everything possible’). This may be a serious problem in Turkey and it also appears to be influenced by the unclear legal status of the right to refuse treatment at the end of life, and also by the lack of well-organised and professional institutions providing hospice care in the country.14
Last but not least, the cross-cultural nature of this issue should also be noted. D's thinking on the issue clearly reflects an autonomy-based perspective, as seen in her email excerpt below:
… I have always been convinced that our death belongs to us, just as much as our life does, and that we should not be obliged to suffer and die by other people's beliefs and/or principles, for the sake of their consciences. In my view, this is a grave infringement of human rights.
This perspective is probably alien to the average Turkish healthcare professional, who usually does not involve patients in decision-making at the end of life. Speaking about death with patients at the end of life still appears to be taboo among healthcare professionals in Turkey; they usually choose to communicate with the family instead of the patient and anecdotal evidence shows that families may have a tendency to demand heroic measures. This suggests that healthcare professionals may have difficulty in managing end-of-life issues, particularly when they face patients with preferences based on individual autonomy.
There is now a systemic effort to move to a more patient-autonomy-centred healthcare service in Turkey, as shown by the recent efforts of the Ministry of Health to implement patient rights in healthcare practice.1 With these efforts, it is not hard to predict that the concept of patient autonomy will soon become increasingly popular. In addition, as we have argued elsewhere,1 the paternalistic approach of professionals and their desire to involve the family instead of the patient in decision-making are not always approved by patients. While Turkish patients’ interpretation of the concept of autonomy may differ from that of their European or American counterparts, we think the practice and the authority of the healthcare professionals will nevertheless be criticised and challenged far more often than it was in the past. Therefore, if Turkey's healthcare professionals fail to realise the problems of the paternalistic paradigm, problems in refusing treatment at the end of life may occur more and more frequently. Indeed, recent empirical evidence indicates that patients’ expectations are not always met adequately during the provision of healthcare services.15 ,16
Experience suggests that the right to refuse treatment, particularly for patients at the end of life, may be seriously limited in practice in Turkey. One of the possible factors contributing to this problem is the lack of clear provisions and guidelines. The problem is magnified as there is no ‘landmark’ or court decision about the right to refuse treatment at the end of life; in the absence of a precedent-setting verdict, the issue is mostly dealt with at the doctrinal level by law scholars. However, there may be serious gaps between theory and practice. If certain practical issues, such as the impossibility of getting notary approval for any advance directive (or a similar document involving the refusal of invasive treatment measures at the end of life) are not recognised or acknowledged, one might mistakenly think that Turkey's current legal framework on the right to refuse treatment is adequate. However, considering the problematic aspects we have noted in the legal framework, we think that such a view would be unrealistic, if not entirely wrong.
If similar problems are to be avoided in the near future, Turkey first needs to amend and clarify the legal framework for the right to refuse treatment. The ideal solution would be to outline the basic framework of all patient rights in a new and specific law enacted by parliament. Patient rights involve fundamental human rights and liberties; therefore, their limits should not be determined by regulations issued by administrative authorities (such as the Ministry of Health).
Last but not least, the difference that ethically sensitive healthcare professionals can make in similar conflicts must not be overlooked. The resolution of ethical conflicts may be possible even in the absence of clear legal guidelines, provided that there is trust and good communication between the parties. However, although such efforts may be effective in the short run, the need for a clear legal framework will eventually be felt, as is proved by the case already examined. Therefore, if arbitrary and paternalistic decision-making in healthcare service is to be entirely avoided, attempts to increase the ethical awareness of healthcare professionals must be accompanied by proper legislative and regulatory efforts that aim to improve the implementation of patient rights.
We thank Professor Ray Guillery for reviewing the grammar and style of an earlier draft of this article. We also thank Professor Julian Savulescu and the editorial team of JME for their support and contributions.
Contributors We declare that both people designated as authors qualify for authorship.
Competing interests None.
Provenance and peer review Not commissioned; externally peer reviewed.
↵i D's mother no longer has the capacity to consent to publication. That consent has been given by her family, on the basis that publication is in her best interests.
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