Bioethics beyond Borders

Religious Minorities and Justice in Healthcare

The Current Situation in Spain
O ROSANA TRIVIN

Introduction There have been huge changes in the political and social realities of Spain in the last thirty years. The transition to democracy after 1978 replaced the monolithic ideology of the Franco dictatorship with diversity, through democratic processes.1 This catalyst has been joined by another more recent and equally signicant one: immigration. The incorporation of people from different backgrounds brings convictions and worldviews that struggle to coexist with traditional ones. In a short period of time, Spain has evolved from an unequivocal identication with national Catholicism to a mosaic of different realities and expectations. This increasing globalization and the demands of democracy have made it necessary to address hitherto unprecedented situations in the country. Debate about headscarves and crucixes comes up in the schools, and in healthcare equally controversial issues arise in connection with moral or religious beliefs. Patients who request halal or
This work has been possible thanks to the scholarship JAE-PREDOC, given by the National Spanish Research Council (CSIC), and to the Research Project KONTUZ! (FFI 2011-24414), n. I am indebted to directed by Txetxu Aus guez-Arias (Instituto de Filosof a, David Rodr CCHS-CSIC) for his valuable feedback and encouragement, and to Mary V. Rorty (Stanford University) for her generous editing work and suggestions. I thank to Stuart Youngner and Mark Aulisio, from Case Western Reserve University (Cleveland, OH), for very helpful discussions and comments on earlier versions of this paper.
Cambridge Quarterly of Healthcare Ethics (2013), Page 1 of 7. Cambridge University Press 2013. doi:10.1017/S0963180113000091

kosher menus at the hospitals, refuse to be seen by male or female doctors, or reject the standard practice of care are only a few examples of these changes. The right to health protection is one of the fundamental social rights established in the Spanish Constitution of 1978, which founded a state obligation to provide adequate medical care and guaranteed equal access to all healthcare resources nanced with public funds. This constitutional recognition, together with respect for the right to refuse treatment as an expression of autonomy, could ironically lay the grounds for an unexpected outcome: an effective right that entitles patients to specic therapeutic practices of their own choice. This was the issue that arose in a ruling by the Spanish Constitutional Court, the STC 166/1996, on October 28, involving a Jehovahs Witness who refused to undergo a blood transfusion and appealed for the national healthcare system to reimburse him for the expenses he had to pay for an alternative treatment obtained in a private clinic. This court case is worth considering because it constitutes the only legal ruling on reimbursement of healthcare expenses for religious reasons ever issued by the Spanish Constitutional Court. Its importance becomes even greater when one considers the combination of increasing resource scarcity and the number and variety of beliefs found in present-day Spanish society. This article argues that although patients treatment preferences are central

o Rosana Trivin to healthcare ethics, they should be balanced against considerations of distributive justice. Specically, the central question is whether the right to freedom of religion justies lling special healthcare requests. The Case In early 1989 a Jehovahs Witness, Miguel ngel Molina, was admitted to the A Hospital de Estella, where he underwent surgery on January 18. During the postoperative period, on February 3, a second operation was needed, for which a blood transfusion was required. Pleading religious reasons, Mr. Molina refused the transfusion and appealed to the court, which subsequently issued an order authorizing it on February 4. That day he underwent a blood transfusion against his will during a third surgical intervention. On February 19, the family asked for a voluntary discharge, which was granted against medical advice. Just more than a year later, the appellant came back to the same hospital with a hemorrhage prole. He was informed that considering the nature of his illness there was a possibility he would need to be transfused. The patient requested to be discharged to undergo yet another operation, this time at a private clinic, arguing that the public healthcare system was not able to guarantee him treatment without blood transfusions. The plaintiff made a claim for compensation by the National Health Service stating that he had been penalized economically on account of his religious beliefs. The Public Prosecutors Ofce argued that alternative treatments for religious reasons had to be accommodated as part of the right to healthcare. The Constitutional Court acknowledged that the possibility of an alternative treatment constitutes a reasonable exception to the standard of care but decreed that it was not possible to infer from the current legislation that the state was obliged to provide it. The appellant alleged that Article 14 of the Spanish Constitution requires that political institutions guarantee sufcient services and assistance for all, without any discrimination. The Constitutional Court responded that, on the contrary, to modify standard medical practice would require providing exactly the differential, nonequitable treatment forbidden by Article 14 of the Spanish Constitution. On these grounds, the Constitutional Court decided to deny the appeal for legal protection. lez Campos However, Judge Gonza presented a dissenting opinion, giving four reasons for his disagreement with the Chamber. First, he maintained that it should have been determined whether or not the blood transfusion authorized by the court and provided against the appellants will was constitutionally legitimate. Second, he pointed out that it was possible to perform an alternative treatment in a private clinic but not in a public hospital, questioning the difference of criteria supposedly based on the standard of care. Third, he said that religious freedom also entails a state obligation to guarantee that people can act according to their convictions. Finally, he stated that the appellant did not request a healthcare service to which he had no right; rather, he only requested that a service to which he did have a right be delivered in a way compatible with his religious beliefs. Religious Minorities and the Spanish Healthcare System: The Jehovahs Witnesses as a Study Case Cases involving Jehovahs Witnesses represent one of the more frequent and most persistent conicts in Spanish hospitals.2 Currently, there are about 200,000 members distributed throughout the country. That is why their claims, marked with

Religious Minorities and Justice in Healthcare milestones like the ruling by the Constitutional Court described previously, are useful examples to study the evolution of Spains treatment of religious minorities, clinically, ethically, and legally. Clinical Perspective Sociologically speaking, increasing population diversity generates the need for new therapeutic approaches adequate to meet new needs. The novelty of these claims, together with the recent shift in the emphasis given to consideration of the patients autonomy,3 helps explain two important facts: the scarcity of specic responses from a healthcare structure oriented to a culturally homogeneous population4 and the lack of studies showing the real situation of the Spanish healthcare system users. In the absence of systematic information, we can only observe some mismatches between the established mechanisms and the current reality, as is made clear by the signicant number of rulings by the courts of justice. 5 Despite increasing respect for patients right to decide, in practice, decisions by Jehovahs Witnesses to refuse blood transfusions lead to situations of conict in the health service. It is still common to nd situations in which both the attitudes toward and the measures taken to respect the patients beliefs vary, depending on the sensitivity of the individual professional in charge. Some hospitals do have protocols for the care of Jehovahs Witnesses, which state how they should be treated and the circumstances that might occur during the care process. Yet the same thing cannot be said about all the healthcare institutions in the country. As a result, there can be cases in which paternalistic inertia determines that blood transfusions be given to Jehovahs Witnesses against their will.6 In other cases, practitioners have raised conscientious objections to concurring in their patients life-threating decisions.7 This kind of paternalistic behavior might be reinforced for two reasons. First, if the transfusion is imposed, rather than chosen, it might serve as a sort of moral exoneration for the Jehovahs Witness, because his or her religious precepts are overridden by the doctors decision. This argument is not unreasonable if one considers the strong social pressure and the high heteronormative level in such communities.8 The second reason is the lack of unanimity in the judicial resolutions. Currently most judges support professional performances that respect decisions of competent adult patients. Still, case resolutions vary according to the ideologies and legal interpretations of the individual judge. If life and health are considered as absolute values, the patients will is replaced by professional judgments on how best to preserve them. But if freedom is seen as a value worth preserving, and if life and health protection are viewed as rights but not obligations, then there is no room for a blood transfusion against the patients will. As a result, these divergent judgments could contribute to encouraging the practice of defensive medicine.9 Regulatory Framework The 1978 Constitution established Spain as a nondenominational state. However, during the transition to democracy, a system of agreements was required to meet the demands of the Catholic Church to facilitate the continuity of the democratic process. Other Judeo-Christian religions have been increasingly incorporated into that system of agreements, but none of them have reached the level of privilege enjoyed by Catholicism. From its very origin, this mechanism of cooperation favors the majority faith and excludes other religious groups that are minorities in the country, such as Jehovahs Witnesses. In 2006, the socialist

o Rosana Trivin government recognized the signicance of the latter, and they received an upgraded status as a religious group, but this has not been translated into any change in their material conditions. Consequently, although there is a legal protection of the right to freedom of worship,10 it is more difcult for some communities to exercise it than others. Formal rights and their exercise are coincident for the Catholic majority, but the same cannot be said for those of other beliefs. As for the right to health protection, recognized under Article 43 of the Constitution and developed in the Ley General de Sanidad and the Ley de n y calidad del Sistema Nacional cohesio de Salud, it has been established as a responsibility of public institutions to organize and protect public health through preventive measures, benets, and services. Yet the law does not recognize a right to choose between private and public healthcare, nor a right to receive whatever services individuals may desire. The obligation of the state extends to available resources, but not to claims to include other special benets. The general rule is that reimbursement of medical expenses is not allowed because individuals will be taken care of within the public system. However, there are legal exceptions to this rule: cases of emergency that have been treated outside the public system when the circumstances did not allow the use of the services provided, and when the services applied do not constitute an abuse of that exceptional situation.11 Case Law (Non)Evolution Judges opinions have almost unanimously tended to reject recognition of claims for compensation for private medical expenses, as in the ruling by the Constitutional Court cited previously.12 The courts have held that obtaining healthcare with the most advanced medical techniques cannot be accommodated in a system characterized by limited resources and universal coverage. Accordingly, it has been established that private medical care is the exception, rather than the rule, and its use must be strongly justied to avoid paying for any healthcare that might otherwise be available through public resources. They recognize that patients have the right to refuse a treatment and to choose between public or private services, but that does not imply they will be reimbursed by the state when their choice is the latter. Citizens religious beliefs must be respected, but there is no obligation to fund the specic aspects of their convictions that differ from the standard practice. Consequences deriving from the observance of religious creeds must be assumed by those who follow them. That said, some exceptions to the general rule have occurred.13 In these cases, the reimbursement was authorized by considering the refusal of a provider to perform surgery without blood transfusion as a case of unjustied refusal to offer medical care. The courts decisions were based on the implementation of the right of freedom to worship, whose limitations are related to public safety, protection of public order, protection of public health or morality, or protection of others rights and freedoms.14 It can be argued that conscious and voluntary rejection of blood transfusion by Jehovahs Witnesses is not a practice contrary to such limitations. Nonetheless, the judges in those cases still considered that this exception does not imply an obligation of the state to provide an alternative treatment that exceeds the state services but instead concluded that the surgery could have been done without cost increase while respecting the patients wishes by avoiding the blood transfusion. Following these arguments, it is possible to go a step further and distinguish

Religious Minorities and Justice in Healthcare between requests for specic treatments not included in the public services and things that can be done under the conditions of the system that, at the same time, are respectful of the patients wishes.15 In this regard, the appeal to the standard of care has been challenged as a defensive argument. It can hide fears, ignorance, and excessive caution on the part of practitioners when they are asked to perform a procedure without a transfusion.16 In fact, there are services within the public health system in which it is possible to perform minimally invasive surgery successfully without blood transfusions, even in cardiac operations or transplants.17 If the intervention needed in the Jehovahs Witness case described previously could have been performed in a minimally invasive way, it could have been provided within the system. Otherwise, he could have been reimbursed on the basis of a claim that the case was an unjustied refusal of medical care. The preceding assumptions would leave some room for attending to Jehovahs Witnesses demands while accommodating their right to both healthcare and freedom of religion. As argued in the dissenting opinion by lez Campos, the nancial Judge Gonza argument should not justify decisions allegedly based on other grounds. There are some doctors in public hospitals who are willing to respect Jehovahs Witnesses religious objection,18 and there are several private clinics, some of which have public funding, where they practice surgery without blood transfusions. This implies that there is some scientic evidence for the safety and clinical efcacy of these medical techniques. Therefore, it is questionable why the public system does not articulate alternative means to comply with this provision, at least in general terms and within budgetary constraints.19 Policy Options The signicant number of appeals by Jehovahs Witnesses to the Spanish courts throughout the last thirty years has shown that this problem needs political responses more than judicial interventions. Jehovahs Witnesses are not the only people who refuse transfusions. The social demand for bloodless surgery is growing and can have multipleand not just religious motivations. When feasible, it should be available to all patients, regardless of their beliefs.20 On the other hand, the Jehovahs Witnesss demand that alternatives to therapies using transfusions be funded by the public healthcare system could give rise to an increase in costs that would inevitably affect healthcare for the rest of the population.21 From the perspective of public policy, differing responses to this problem can be offered: 1) Because the required treatment exceeds the cost of the services that are publicly funded, the costs need not be assumed by the state, as the Constitutional Court ruled. This response seems reasonable so long as there really is a cost differential. 2) If Jehovahs Witnesses choose not to undergo a blood transfusion, they could be offered alternative therapy within the public healthcare system. In my opinion, this would be acceptable if the alternative treatment fullls the following conditions: it is a medically indicated procedure, and its costs are not higher than the default treatment supplied by the system. An example might be less invasive surgical procedures with a lower risk of bleeding. When possible, this solution seems to be the most advantageous for all parties. Yet,

o Rosana Trivin paradoxically, it has not always been offered. It is not easy to change protocols, routines, and value judgments when the demand to do so comes from religious beliefs that are considered eccentric.22 3) The state could adopt a policy of reimbursing patients for the difference between the cost of the private treatment received and the public treatment refused.23 I disagree with this option, because it could endanger a bigger and more valuable interestthe social good of universal publicly funded healthcareand might set a dangerous precedent. Appealing to the same rationale, parents could ask for an equivalent of the cost of the free public school they do not use, to pay for a private religious school of their choice, or the difference of costs between the two institutions. 4) The state could include procedures requested by minorities in the list of services covered by the public system. This alternative, although it best accommodates respect for diversity, would be inextricably related to the availability of resources. Yet might it be possible to meet this or other special requests from people with different convictions without allowing inequality? Social achievements such as free public healthcare or free education have been one of the most important successes in European societies, and they are valuable goods to be preserved. At the same time, the recognition of difference, and its accommodation, constitutes important facts that should not be ignored. This may require a change not only in ethnocentric attitudes and disrespectful behaviors but also in the inclusion of measures in the political agenda to consider the interests of the whole citizenry. Multicultural accommodation has not been a priority in Spain, and currently it is even less so. With the economic downturn, when much more attention is being paid to cuts in services, the inclusion of new provisions seems to be a fantasy. When the recognition of diversity comes into conict with conditions of material equality, the duty of justice leads one to consider the individual as a part of a larger whole, the interests of which must be considered. It is under this premise that it has been possible to achieve more egalitarian societies, and this concept is the main reason to be committed to the common good when it comes to healthcare. As some of the possible policy options discussed previously suggest, however, this priority need not be incompatible with some accommodation to individual differences.

Conclusions Universal and free healthcare systems ` were not designed to fund treatments a la carte. Nevertheless, globalization has given rise to new challenges when the two values of diversity and material equality are in conict. As we have seen, if some peoples religious requirements are not congruent with commonly accepted health needs, it can be argued that their status as a minority is prejudicial to their interests, and therefore, requirements to respect both their freedom of religion and their right to healthcare are not guaranteed.

Notes
1. Tarodo Soria S. Restricciones a la libertad de creencias durante el periodo franquista en mbito de la sanidad. In: Souto B, ed. el a Libertad de creencias e intolerancia en el franquismo. Madrid: Universidad de Alicante y Marcial Pons; 2008:141220. a Izaguirre C. Situacio n actual 2. Barroso P, Garc tica Asistencial en los s de E de los Comite

Religious Minorities and Justice in Healthcare

blicos y privados de Comunihospitales pu nomas de Espan tica a. Revista de Bioe dades Auto y Ciencias de la Salud 2000;4(1):122, at 3. Certain important rulings by the Constitutional CourtSTC 120/1990, STC 119/2001, and STC 154/2002and legal initiativessuch as the a del paciente, which was Ley de autonom passed only in 2002, or the recent bill on Derechos as de la dignidad de la persona en el y garant proceso de la muerte, which was passed in 2010are indicative of this. Exceptions to this are documents such as Generalitat de Catalunya. Guia per al ` mbit respecte a la pluralitat religiosa en la General hospitalari. Barcelona: Direccio dAfers Religiosos; 2005; available at https:// www20.gencat.cat/ docs/Departament_de_ la_Vicepresidencia/Arees%20d%20actuacio_ N/Afers%20religiosos/Direccio%20General% 20d%20afers%20religiosos/Recursos/guies_ respecte/Guia_pluralitat_religiosa_ambit_ hospitalari.pdf; or Observatorio del Pluralismo a de gestio n de la a. Gu Religioso en Espan diversidad religiosa en los centros hospitalarios. tica Madrid: Ministerio de Sanidad y Pol Social-SESCAM; 2011; available at http:// sescam.jccm.es/web1/ciudadanos/elSescam/ ch_descarga_Guia_Hospitales.pdf. Examples include, among others, the ruling by the Constitutional Court chosen as a study case (STC 166/1996, October 28) or the STC 154/2002, July 18. ` tica Opinion Group of the Observatori de Bioe i Dret. Declaration of the Refusal of Jehovahs Witnesses to Accept Blood Transfusions. Barcelona: c-Observatori de Bioe ` tica i UB-Parc Cient Dret; 2005, at 356; available at www.pcb.ub. edu/bioeticaidret/archivos/documentos/ Testigos_de_Jehova.pdf. metro de la objecio n de Seoane JA. El per dica. InDret 2009;4; available at conciencia me www.indret.com/pdf/682_es.pdf. There are some testimonies from ex-members who report the serious consequences of this environment. For example, A los Testigos les sale un grano. Pu blico 2009 de Jehova July 31; available at www.publico.es/espana/ 241905/a-los-testigos-de-jehova-les-sale-un-grano rez Ferrer A, Gredilla E, de Vicente J, Pe a Ferna ndez J, Reinoso Barbero F. Garc n Fundamento del rechazo a la transfusio nea por los Testigos de Jehova . Aspectos sangu tico-legales y consideraciones aneste sicas en e a ola de Anestesiolog su tratamiento. Revista Espan n 2006;53:3141. y Reanimacio Article 16 of the Spanish Constitution, Ley nica 7/1980, de 5 julio, de Libertad Orga Religiosa. 11. Articles 17 and 102 of the Ley 14/1986, de 25 de abril, General de Sanidad. 12. See, among others, Sentencia del Tribunal Supremo 529/1990, de 22 de noviembre; Sentencia del Tribunal Supremo de 14 abril mero de recurso 1446/1992); Sentencia 1993 (nu del Tribunal Supremo de 3 de mayo de 1994 mero de recurso 2710/1993); Sentencia del (nu Tribunal Superior de Justicia de Galicia 23/ 2008, de 22 febrero; Sentencia del Tribunal Superior de Justicia de Madrid 633/2008, de 9 de junio; and Sentencia del Tribunal Superior a 4982/2008, de 13 de de Justicia de Catalun junio. 13. Sentencia del Tribunal Superior de Justicia de Castilla la Mancha de 15 de abril de 1991 mero de recurso 183/1991); Sentencia del (nu Tribunal Superior de Justicia de Navarra 356/1993, de 3 de julio de 1993. The latter one was nally overturned by the Supreme Court (Sentencia del Tribunal Supremo de 3 de mero de recurso 2710/1993). mayo de 1994, nu nica 7/1980, de 5 julio, 14. Article 3.1, Ley Orga de Libertad Religiosa. n del 15. Arruego G. El rechazo y la interrupcio tratamiento de soporte vital en el derecho ol. InDret 2009;2:127, at 13. espan mez ME, Simo n P, coords. Recomendaciones 16. Go n de protocolos de atencio n para la elaboracio sanitario a personas que rechazan la terapia con sangre o hemoderivados. Sevilla. Junta de Andaa; 2011, at 44. luc 17. Leal R, coord. Documento Sevilla de con n de senso sobre alternativas a la transfusio nica. Medicina Cl nica 2006;127 sangre aloge a cardiaca Suppl 1:320; Reyes G, et al. Cirug : resultados sin sangre en testigos de Jehova ola de frente a grupo control. Revista Espan a 2010;60(7):72731. Cardiolog 18. Examples include, among others, Hospital s de Valdecilla (Santander), Universitario Marque Hospital Universitario de La Princesa (Madrid), e (Burgos). and Hospital General Yagu n C. El reintegro de gastos me dicos 19. Gala Dura y el derecho fundamental a la libertad religiosa: . Civitas: Revista el caso de los Testigos de Jehova ola de Derecho del trabajo 2001;105:34164, Espan at 3567. mez, Simo n 2011, at 7. 20. See note 16, Go 21. Savulescu J. The cost of refusing treatment and equality of outcome. Journal of Medical Ethics 1998;24:2316. 22. Turner L. Bioethics in pluralistic societies. Medicine, Health Care and Philosophy 2004;7: 2018, at 203. 23. Llamazares D. Libertad de conciencia, identidad personal y solidaridad. Madrid: Civitas; 2007, at 407.

3.

4.

5.

6.

7.

8.

9.

10.