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Advance Healthcare Directives in Italy and India

Patients’ demand for self-determination through the recognition of their right to die is in the process of being satisfied by states with the introduction of methods executing said right, namely passive euthanasia (PE) (Bhardwaj, 2018). Euthanasia, a Greek term translating to “easy death”, is passive when it entails the withholding or withdrawal of medical treatments executed by a third party leading to the patient’s death (Wilkinson, 2005). Its permissibility in India and Italy came after contrasting interpretations, and it is now based on the belief that the right to refuse medical treatments allows for the protection and exercise of the rights to dignity and self-determination. However, Passive Euthanasia necessitates mental capacity—the state of people who are able to understand information and make and express decisions. This was made evident by notorious Indian and Italian cases and led people to worry about the lack of power to exercise such rights were they to become mentally incapable. In this complex scenario, a crucial role is held by legal declarations known as Advance Healthcare Directives (AHD) regulating one's future intentions to refuse treatments. This essay will focus on the different legal frameworks of India and Italy surrounding AHD, with an attempt to compare the countries' approaches and determine AHD's suitability in answering individuals' concerns regarding future mental incapacity. Firstly, the essay will discuss PE requests for incapacitated patients, with emphasis added on the cases of Englaro and Aruna Shanbaug and the court's role in declaring its admissibility. Finally, this essay will focus on AHD as a whole and their role in providing effective protection of the "right to die".

Self-determination as freedom of choice entails that one must be able to make choices; however, as incapacitated patients in a vegetative state cannot express binding decisions, let alone refuse treatments, their right to dignity is compromised (Wehmeyer, 2010). Judges in India and Italy have been called to deal with the issue, in the absence of action by the legislative body. Indian judges' role as lawmakers is not unusual because of their belonging to the common law tradition where judge-made law is a source of law (Hodge, 2019). Differently, Italian judges are mouths of the law rather than lawmakers, following the principle of separation of powers adopted by Italy and deriving from the civil law tradition Italy is part of (Hodge, 2019). Nevertheless, it is through their judgments that incapacitated patients' rights found protection. In Englaro's case, the father of a patient in a vegetative state who was kept alive by life-sustaining treatments requested to withdraw said treatments because detrimental to her right to live a dignified life (Corte di Cassazione, 2007). The Italian Tribunal rejected the claim, arguing that the choice was personal and only the patient could dispose of her body and make use of the codified right to refuse cures. The petition was refused also on the argument that, when a person is unable to express consent, the tension between the right to self-determination is shadowed by the right to life. However, the Tribunal failed to consider the fundamental status of dignity, also recognized by the Italian Constitutional Court, that the petitioner asked to acknowledge. When the matter reached the Court of Cassation, dignity was finally taken into consideration, and it was held that the guardian should act in the best interest of the patient and demonstrate a well-founded belief that withdrawing treatment would be the patient's desire, as she would have felt her right to dignity and self-determination defended. On these premises, the Court authorized the withdrawal of life-sustaining treatments as a way to respect her dignity and best interest as reconstructed by her legal guardian (Corte di Cassazione, 2007).

Figure 1: Protests in favour of euthanasia (De Melo Moreira, n.d.).

In the case of Aruna Shanbaug, the Indian Supreme Court recognized the right to dignity and self-determination in allowing competent people to request the termination of life-sustaining treatments and extended the reasoning to incapacitated patients (Aruna Shanbaug v. Union of India, 2011). The Supreme Court laid down guidelines in the absence of a law, similar to what the Constitutional Court had done in Englaro. Therefore, life-sustaining treatments of a vegetative incapacitated patient could be suspended at the request of a legal guardian acting in the patient’s best interest and aiming at the protection of the rights to self-determination and dignity. Both countries have a codified law that gives Courts the power to issue authorizations for acts requested by legal guardians. Under the recalled principle by the Supreme Court of Parens Patriae (Parent of the Nation), Courts take on the role of defenders of the benefit of the patient. This is beneficial as it prevents disrespect for the patient's wishes. Yet, as the ultimate decision rests in the hands of judges, a case-by-case approach is used. The result is the recognition of a right that is not equally ensured. Civil law tradition is partially to blame as there is no recognition of the binding role of judicial precedent (Tartuffo, 2016). Differently, in the Common law tradition, precedents have a binding role for future judgments (Tartuffo, 2016). However, as the difference is less sharp than before, the Civil tradition’s disregard for judicial precedents acts as a threat in India as well (Fedynskyj, 1975). The main victims of the fragmented framework are individuals who find their rights not codified and hence subject to interpretation, which could not sufficiently understand the patient’s personal views as it is authorized by judges acting in a paternalistic perspective and ultimate decision-makers.

This chaotic scenario urged the introduction of methods that would prevent the need to ask judges to authorize Passive Euthanasia in incapacitated patients and provide suitable protection for their rights to self-determination and dignity. If self-determination can defeat death through wills empowering individuals in the imposition of their future intentions, it is logical that it should do the same with regard to mental incapacity (Schouler, 1892). The answer was found in the so-called living will that differentiates from mortis causa will on the fact that its content will be enforced in case of mental incapacity rather than death, but are equally defined as legal declarations of intent (Sneddon, 2014). Mortis causa wills are in fact enforced only after the death of the testator and ensure that the intention of the person is enforced even after death. Italian legislators crafted a law, Law 219/2017, aiming to provide certainty and protection to the rights that found clear recognition in the Courts’ judgments (Gristina et al., 2019). Indian legislators, despite the proposals of Bills, have not taken any action yet. The recognition of living wills, better referred to as Advance Healthcare Directives, finds its legal basis in the Supreme Court’s judgment in the Common Cause case (Choudhary, 2019). The Court thought it to be its constitutional obligation to provide protection to the rights to self-determination and dignity and issued guidelines on the regulation of AHD as an instrument to provide said protection. These guidelines and Law 219/2017 regulate the matter through similar legal concepts that will be discussed in the following paragraphs.

Figure 2: Indian Supreme Court (Supreme Court of India, n.d.).

Since the content of the AHD concerns the right to refuse medical treatments amounting to the exercise of Passive Euthanasia, the need to ensure its validity and personal value are of paramount importance (Leuzzi, 2021). Indian guidelines and Italian law both specify that mental capacity and legal age are essential for the expression of the individuals' consent to refuse medical treatments, as they are, for instance, in the formation of a contract. As AHD attempt to regulate future incapacity that prevents the expression of consent, the underlining idea is that a precedent expression will be binding on guardians and physicians only when said consent is the will of a mentally capable person able to understand and choose. As a result, the prior expression of consent will be considered valid and will replace not only the role of legal guardians but also of the Courts. The mental capacity allows for consent to travel from the past into the present when the patient is not able to express it anymore.

Indian guidelines refer to the way an AHD should be crafted by providing they must be written declarations signed by the executor before witnesses and countersigned by the Judicial Magistrate of First Class (JMFC) (Common Cause v. Union of India, 2018). In addition to authenticated written declarations before a notary and written declarations registered by the local competent authorities, Italian law provides additional methods, showing more flexibility on the formality of the document (Italian Law 219/2017). Special regard is given to the condition of physically incapacitated patients who are allowed to videotape their declarations. The explanation for such difference could derive from the fact that the Supreme Court's guidelines are intended to be enforced temporarily until a codified law regulates the matter and, therefore, concentrates less on secondary elements. However, Indian judges have shown that, as Common law judges, they have the power to regulate even in the absence of a codified law. The lack of attention to the matter cannot be justified by the fact that there is no codified law provided by the legislator (Hodge, 2019). The nature of the topic should alone suggest particular attention to the physical conditions of patients. Furthermore, the involvement of a judge, particularly the JMFC, to give effect to the declarations acts as a striking note that limits the ADH's practical enforceability in India (Choudary, 2019). This does not find a reasonable explanation, as mortis causa wills do not need the involvement of the judicial body to be enforced, and their validity is guaranteed by the presence of witnesses at the time they are written. Whereas in the Common Cause case, the Supreme Court failed to overcome the involvement of judges that was first introduced in Aruna Shanbaug and declared it essential for the validity and enforcement of AHD. This entails that an Indian citizen needs to seek approval from a judge in order to make their intentions binding in case of future mental incapacity. As a result, the Supreme Court’s intention to protect the rights to self-determination and dignity does not emerge sufficiently from the complex procedure outlined (Choudary, 2019). Furthermore, the concerns about the possibilities of lack of mental capacity or coercion by others, which could have led the Indian judges to provide a rather strict procedure, do not justify such complexity as the presence of witnesses is already mandatory. Thus, it seems redundant to ask for both witnesses and a judge to verify the validity of ADH and the different treatment provided for mortis causa wills and living wills does not find a rational or compelling explanation.

Turning once again to Italy, the scenario seems more encouraging, as there is more flexibility allowing patients physically unable to resort to different methods in order to make their intentions known. However, the general rule is to create AHD through written declarations that must be authenticated by a notary. The rule certainly aims at ensuring the validity of the documents. Yet, a concern circulating among academics is the possible burden that bureaucratic obligations entail (Calvo, 2018). The need to assess and confirm the validity of the document is a well-founded principle that ensures that the document reflects the true intentions of the mentally capable adult but the technical and formal burdens placed on the individual could lead to a scarce application (Calvo, 2018). On another note, the noble intention to allow physically incapacitated patients to make AHD is not supported by sufficient protections for the validity of their declarations, which could be the result of third-party pressures. A common ground between flexibility and formality is desirable.

Figure 3: Artistic representation of euthanasia (Luccosu, 2012).

Once declarations are made, they need to be known in order to be respected and enforced. In India, AHD must be preserved by the JMFC and transmitted to competent local officers, relatives, and family physicians (Common Cause vs. Union of India, 2018). Law 219/2017 does not make similar efforts in establishing the methods of disclosure, as it leaves the broad possibility for the individual to leave copies and related instructions. The Supreme Court’s clarity on the matter is to be applauded as, in this instance, the overregulation is instead an effective way to ensure that AHD will not go unnoticed. The lack of specification by the Italian legislators led to the opposite case in which relatives and physicians could simply ignore the existence of AHD as there are no efficient methods of disclosure as of today (Cloug, 2006). The only proposed methods refer to registration of the AHD in databases of the local territorial authority or National Health Service or by the notary that has authenticated the document. However, an ambiguous interpretation derives from the legislators’ acceptance that those databases could not yet be implemented and the fact that the individual can lawfully choose not to refer to a notary. Even if registered, the legislator fails to impose efficient mechanisms of public disclosure that could make individuals’ voices silenced in the same way their rights are ignored in the absence of regulation of Passive Euthanasia for mentally incapacitated patients. A scenario in which the physician is a bureaucrat instead of a medical practitioner.

Indian guidelines offer a suitable method of disclosure that should be inspiring for foreign legislators. However, the matter could be solved through the nomination of a trusted guardian who will act in place of the patient when mentally incapacitated and ensure the application of AHD. The Supreme Court requests the nomination of the guardian as an essential element, whereas the Italian law allows for its absence. On the one hand, the Italian legislators' approach gives centrality to the individual in a personalistic perspective, also codified under Article 2 of the Constitution. It suggests that the sole intention of the individual should be enough to give application to the document. On the other hand, practical concerns such as the one discussed regarding the lack of public disclosure make the presence of a guardian a guarantee that the patient's intentions will be respected alongside self-determination and dignity (Ministry of Foreign Affairs, 2016).

Figure 4: Italian Constitutional Court (Pingstone, 2007).

If the document is valid because compliant with the above-mentioned procedures, its content can produce effects, but additional elements are attached to consent. AHD in India contains “the decision relating to the circumstances in which withholding or withdrawing of medical treatment can be resorted to” (Common Cause v. Union of India, 2018, para. 191). In Italy, ADH are also vehicles for expressing consent to refuse medical treatments. The Italian law finally recognizes the right to refuse medical treatments deriving from judicial interpretation, also an expression of the rights to dignity and self-determination, and clarifies that when consent is valid because informed and free from interferences, it acts as an element of validity for the exercise of the right. The same elements of freedom and information are also recalled by the Supreme Court as essential elements for the validity of consent (Common Cause v. Union of India, 2018). These elements are also equally codified in Indian and Italian contract law, entailing that consent must be the expression of a mentally capacitated individual and free from mistake and coercion (Civil Code, art. 1425; Indian Contract Act, S. 11, 14). As for the essential lack of third-party interferences, entailing that the declarations are free from external coercion and thus the expression of one's own wishes, these are guaranteed through the formal elements of AHD attesting that the document was a free exercise of consent (Common Cause v. Union of India, 2018; L. 219/2017).

Consent is set to change the relationship between physician and patient as it becomes the central element of medical treatment with binding effects on the physician (Bolcato et al., 2020). Law 219/2017 specifies that the medical relationship is based on consent and, thus, its absence distinguishes between a lawful and unlawful treatment with criminal consequences for the physician disregarding the patient's consent. On the contrary, despite consent being enhanced by the Supreme Court, the patient is not elevated to an equal position in the relationship with the physician, not even if consent is informed, perhaps due to the spread assumption of the doctor's superiority (Jacob, 1991). That is evident from the restricted scope of effects of AHD that are given due weight by doctors, but no binding effect is mentioned. The disregard of consent leads to a scenario in which the opinion of others has primacy over the decision a person has taken for themselves. The opposite scenario is found in Italy where consent is given a priority role as it is necessary to make self-determination possible. However, concerns about its outdatedness arise. Consent that has been expressed years prior to its practical execution could lose the element of validity because it lacks a temporal connection: a patient’s intention to accept life-sustaining treatments could change during their lifespan and not be a truthful representation of the person’s beliefs regarding how they wish to be cured. The problem is partially solved with the possibility, given by both the Supreme Court and Italian legislators, to modify AHD with no restrictions other than compliance with formal procedures. Moreover, methods of periodical updating could be implemented to avoid situations of ambiguity that could invalidate AHD's effects. As consent must be informed, information takes the shape of both an element of validity and a right. This entails that the patient has a claim to be informed about their medical condition and the related treatments, and only when the patient is made aware the consent will be valid. The result is an obligation placed on the physician who has to take on the role of informer when the patient is capable of understanding, but as for incapacitated patients, the informed consent will be preventative and there is no guarantee that the individual's knowledge is sufficient. In fact, there is no involvement of the physician in the crafting of AHD that helps transform free consent into informed consent. The concern is, once again, that incapacitated patients will find lower protection due to a lack of knowledge and assistance (Vadeyar et al., 2013).

Figure 5: Beppino Englaro, father of Eluana (Nappi, 2011).

AHD produce their effects when the individual is in a state of incapacity, as provided by both Law 219/2017 and the Supreme Court’s guidelines. However, India has further conditions for the exercise of its content, the right to refuse treatments, as the patient must “be terminally ill and undergoing prolonged medical treatment with no hope of recovery” (Common Cause v. Union of India, 2018, para. 191). The recognition of Passive Euthanasia by the Italian Constitutional Court for incapacitated patients provided for the same conditions as the vegetative state must be irreversible, but the codification of the principle by Law 219/2017 expanded its scope of application and removed those conditions, making the binding effect of consent immediate. It is by virtue of Law 219/2017 that the preventive expression of valid consent spares incapacitated patients from undergoing years of life-sustaining treatments that they consider damaging to their dignity and self-determination. It is not the same rationale followed by the Supreme Court in India. Despite the recognition of the right to refuse treatments for competent patients, the Supreme Court still prevents its full practical exercise as it does not effectively change the guidelines laid down in the prior case of Aruna Shanbaug. As a result, incapacitated patients who have expressed their consent through AHD will still have to wait years before the effect of their informed decisions will be enforced and respected. If the Supreme Court accepts self-determination and dignity as fundamental rights that are exercised through medical consent in refusing treatments, it is not clear why those rights can be suppressed once consent is in fact present (Sahni, 2018). Consequently, the right to die with dignity is still subject to conditions in India; conditions that are instead considered irrelevant in Italy in the existence of valid AHD. Furthermore, Indian guidelines continue to include an active involvement of the judicial power as AHD's effects will have to be authorized, not only by a Medical Board but also by the JMFC. Consequently, AHD's effects are limited by third-party considerations, showing once again the firm belief India has in the application of the Parens Patriae principle, not only attributed to judges, but also physicians. Whereas, in Italy, the judge is given only an exceptional and residual role in solving eventual conflicts between the physician and the guardian because the binding effect of consent leaves little space for disapplication and discretion.

The long-awaited recognition of the right to refuse life-sustaining treatments for incapacitated patients was the result of action by Italian Courts, an unnatural position considering their belonging to the Civil law tradition, and Indian Courts, in a less unusual position. The guidelines for Passive Euthanasia requests by legal guardians were regulated by judges who acted paternalistically as supervisors of the patient's best interest. The fragmented framework left by judgemade regulation urged a change. Law 219/2017 marked the end of the role of judges, whereas AHD were regulated in India through a Supreme Court’s judgment. India and Italy appear similar as they both aim at the protection of the right to refuse medical treatments as the embodiment of the rights to protection and self-dignity. The content is, therefore, the same, but the methods of implementation and their consequences are not always similar, despite the resort to traditional legal concepts of mental capacity, formality, public disclosure, consent, and legal effects. On the one hand, it appears that the path to the application could be burdensome due to complex procedures in both Italy and India; however, the same complexity seems necessary in assessing the validity of AHD, entailing that they are the declaration of a mentally capacitated adult and should be ensured even in more flexible AHD forms. As for the content, consent is the essential element that allows one to lawfully refuse medical treatments, and attached to it are the elements of information and freedom deriving from contract law. Consent has greater effects on Italian physicians, who are bound by it in their relationship with the patient. The same cannot be argued for India, where the patient's consent does not hold equal value to the physician's opinion, creating concerns that it will not be given due respect and threatening patients' rights. It appears that Indian judges are reluctant to give up their paternalistic role, which is instead almost non-existent in Italy after the legislators have taken up the courage to replace judges in the bioethics debate. Overall, it seems that the Italian regulation of AHD will provide for better recognition of consent and, therefore, of fundamental rights of dignity and self-determination. Nevertheless, Indian judges' involvement in AHD regulation is to be looked upon as a striking example of judge-made law in the absence of legislators' intervention. The right to die by preventive refusal of treatments is still far from being a practical reality.

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Sofia Grossi

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