Italy's New Advance Directive Law When in Rome…

Opinion

VIEWPOINT Italy’s New Advance Directive Law When in Rome…

Daniel P.Sulmasy, MD, Although all human beings share the same biology,the manent vegetative state, and conservative elements PhD political context of medical practice, like all politics, is no- within the Church have pushed for a declaration that hy- Departments of toriously local. So, while some might be surprised to learn dration and nutrition can never be forsworn in any af- Medicine and that Italy only adopted its first advance directive legis- fliction. Many theologians, however, think this is a dis- Philosophy, Pellegrino Center, and Kennedy lation in the closing days of 2017,such surprise would re- tortion of Church teaching, and Pope John Paul II, who Institute of Ethics, flect a kind of naive parochialism. Rome, Italy, is not suffered from Parkinson disease, had his own nasogas- Georgetown University, Washington, DC. The bill, which passed the Italian Sen- tric feeding tube (which had been inserted during his fi- Washington, DC. ate in December 2017 after 3 decades of debate, as- nal hospitalization) removed when he returned home to sumed the force of law on January 6, 2018. The law es- die in the Vatican in 2005. tablishes a right to refuse tests and treatments, a right In a broader context, the Church may have staked to palliative care, and provides for living wills and the out a very conservative position on issues such as feed- naming of medical proxies; assisted suicide and eutha- ing tubes and advance directives as a political strategy nasia remain illegal.1 The protracted legislative course re- to stave off the legalization of assisted suicide. The po- flects a complex amalgam of culture, religion, lan- litical wisdom of the stance has been questioned,4 but guage, politics, ethics, and medicine. it may help to explain why the Church’s rhetoric about this bill has seemed so discordant with its own theol- Culture ogy. Nonetheless, it is not unreasonable for the Church In approaching the end of life, Americans, generally to suspect that many of those who propose advance di- speaking, share much in common with Northern Euro- rective legislation actually do have assisted suicide and peans, Canadians, Australians, and the British— euthanasia in mind. For example, the major political or- focusing on individual rights, autonomy, consumerism, ganization that promotes assisted suicide laws in the direct speech, and outcomes. Southern Europeans (and United States today—Compassion and Choices—grew most of the rest of the world) tend to emphasize social from precursor groups that were frustrated when the solidarity, the duty to care, indirect and symbolic com- Euthanasia Society of America morphed into the Soci- munication, and an emphasis on process. These differ- ety for the Right to Die and settled for championing ad- ences are reflected in care. In 2003, Sprung et al2 dem- vance directive legislation in the 1970s and 1980s.5 onstrated that, when compared with their Northern European colleagues, intensive care physicians in South- Language ern Europe were 3 times more likely to engage in unsuc- Italians no longer use the term “extraordinary means” cessful cardiopulmonary resuscitation, more likely to (mezzi straordinari) when describing the moral limit on withhold than to withdraw life-sustaining treatment, and treatment. Rather, they use the term accanimento tera- only one-tenth as likely to take steps that would ac- peutico (“therapeutic fury”). This linguistic shift, owing tively shorten the dying process.2 This cultural reluc- to a less than faithful translation from the French acha- tance to forgo treatment has continued, partially ex- rnement thérapeutique (“therapeutic obstinacy”), has plaining the long path to passage of Italy’s law. found a welcome place in a culture that generally leans toward more treatment. Yet the term “therapeutic fury” Religion sets a very high bar for stopping treatment, suggesting Although weekly church attendance is low, the vast ma- that unless the treatment is actively harming the pa- jority of Italians consider themselves Roman Catholic, tient it needs to be continued. By contrast, in the 1400s, and the Church is highly influential. While consistently a doctor’s recommendation of a diet of partridge rather opposingeuthanasiaandassistedsuicide,theChurchhas than chicken could be considered a morally optional, ex- long permitted the forgoing of life-sustaining treat- traordinary means of treatment if the family could not ments. Catholic theologians invented the phrase “ex- afford the finer meat. Eating partridge hardly amounts traordinary means” 500 years ago, and Pope Pius XII ap- to “fury.” Thus, the very language used to describe the 3 Corresponding plied this to ventilators in the 1950s. Yet Church officials moral standard for forgoing life-sustaining treatment has Author: Daniel P. strenuously opposed most versions of the advance di- shifted in Italy in a direction that makes it more difficult Sulmasy, MD, PhD, rectives bill, often denouncing it as euthanasia in dis- to stop.6 The linguistic milieu may have contributed to MACP, Pellegrino Center for Clinical guise. How can one explain this opposition when the bill resistance to a law that might seem innocuous in other Bioethics, 4000 seemed perfectly consistent with Catholic teaching? One sociolinguistic contexts. Reservoir Rd, reason is that the bill did not differentiate between for- Room 238, Bldg D, going artificial hydration and nutrition and forgoing other Politics Washington, DC 20007 (sulmasyd treatments. In 2004, Pope John Paul II singled out hy- Italian politics are highly fractious. Since 1945, Italy has @georgetown.edu). dration and nutrition as required in cases such as the per- had 61 governments, and a dozen parties presently

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have seats in its 315-member Senate. Despite support for advance Second, there is something sensible about the internal ratio- directives from both the left and the right, it was always very easy nality and ethics of medicine that does seem to transcend geogra- to block passage of the other side’s version of the bill to prevent phy, culture, and political regime. The suffering wrought by sick- others from claiming victory. Moreover, during the many years of ness and dying is universal. Good physicians strive to mitigate that debate, successive sensational end-of-life cases dominated the suffering within the bounds of the profession’s methods, goals, and headline-hungry Italian media. Piergiorgio Welby, a poet with mus- ethical standards, no matter where they practice. Despite the lack cular dystrophy, was a leading leftist figure and proponent of of a legal basis for advance directives during the entire course of the euthanasia. In 2006, both sides in the debate characterized his legislative debate, most Italian patients, families, and physicians con- public discontinuation of his ventilator, after years of political agi- tinued to make sensible bedside decisions about care at the end of tation on the subject of euthanasia, not as forgoing life-sustaining life. Italy is 1 of 15 European nations recognizing palliative care as a treatment but as euthanasia.7 In 2009, Eulana Englaro, a woman medical specialty. There are fewer patients per capita in the perma- in the permanent vegetative state, died after the discontinuation nent vegetative state in Italy (0.5 to 4 per 100 000) than in the of her feeding tube in the wake of an Italian media firestorm United States. (5 to 13 per 100 000).10 equivalent to that surrounding the case of Theresa Schiavo in the Third,medicineisalwayspracticedinparticularcultural,religious, United States, who also suffered from the permanent vegetative linguistic,andpoliticalcontexts,andthesecontextsimpactbedsidede- state and had her tube removed in 2005.8 Even as the law was cisions.AlthoughItaliansdotendtobemoreconservativeaboutwith- being debated, Marco Cappato, an Italian radical, was being tried drawinglife-sustainingtreatmentsthanisthecaseinNorthernEurope for having assisted in the suicide of disc jockey Fabiano Antoniani and the United States, the approach to care at the end of life has been (who had been paralyzed in an auto accident), by having taken compassionateandcompetent.Althoughwecanlearnfromeachother, him to Switzerland, where the practice is legal.9 Although assisted we must also respect our differences. suicide remains illegal in Italy after the law, such cases dominated Fourth, we should not be so quick to judge other cultures as the media and influenced the debate. Sound bites and bitter backward or misguided. Italy got there, in an especially Italian way, recriminations supplanted reasoned argument, forestalling legisla- and good physicians generally made sure that political wrangling did tive progress on advance directives. not interfere with good care. So, whether in Rome or Washington, DC, a physician is first and Lessons Learned foremost a physician, and should be guided by the rationality and First, medicine is best practiced by physicians and not by legisla- ethics of the profession. The medieval aphorism that the goals of tors or reporters. Sometimes laws are needed and can facilitate good medicine are to cure sometimes, relieve often, but to comfort al- care, but at other times they result from political sausage-making, ways holds across time and space. Nonetheless, when in Rome, phy- are unsuited to the vagaries of individual cases, and are fraught with sicians tend to practice like Romans. And when in Washington, phy- unintended consequences. sicians, like everyone else, are trapped hopelessly inside the Beltway.

ARTICLE INFORMATION 3. Pius XII. The prolongation of life. The Pope 2012;12(2):Article 3. http://scholarship.law Published Online: March 12, 2018. Speaks. 1958;4.4(Spring):393-398. .marquette.edu/elders/vol12/iss2/3. Accessed doi:10.1001/jamainternmed.2018.0462 4. Cahill LS. Catholicism, death and modern January 26, 2018. Conflict of Interest Disclosures: None reported. medicine. America (NY). 2005;192(15):14-17. 9. Poletti F. Dj Fabo, Cappato a processo: “Era mio dovere aiutarlo a morire.” Il leader radicale è Additional Information: Dr Sulmasy is the André 5. Lewy G. Assisted death in Europe and America. New York, NY: Oxford University Press; 2011:4-5. accusato di “aiuto al suicidio.” La Stampa. Hellegers Professor of Biomedical Ethics at the The December. 13, 2017. http://www.lastampa.it/2017 Pellegrino Center for Clinical Bioethics, as well as a 6. Sulmasy DP. The clinical decision making process /12/13/italia/cronache/dj-fabo-cappato-a-processo- Senior Research Scholar at the Kennedy Institute of for the elderly patient at the end of life: upholding era-mio-dovere-aiutarlo-a-morire- Ethics. the tradition. In: Carrasco de Paula I, Pegoraro R, h1w138hNwag8yyNBHu77FI/pagina.html. eds. Assisting the elderly and palliative care: Accessed January 26, 2018. REFERENCES proceedings of the 21st General Assembly of 10. Pagani M, Leonardi M, Covelli V, Giovannetti 1. Senato della Repubblica. Norme in materia Members, Pontifical Academy for Life. Vatican; 2015:83-99. AM, Sattin D. Risk factors for mortality in 600 di consenso informato e di disposizioni anticipate patients in vegetative and minimally conscious di trattamento. December 14, 2017. http://www 7. Fisher I. Italian poet dies with help from a doctor. states. J Neurol. 2014;261(6):1144-1152. doi:10.1007 .senato.it/service/PDF/PDFServer/BGT/01062643 New York Times. Dec. 22, 2006:A3. /s00415-014-7309-8 .pdf. Accessed January 26, 2018. 8. Cerminara KL, Pizzetti FG, Photangthum WH. 2. Sprung CL, Cohen SL, Sjokvist P, et al; Ethicus Schiavo revisited? the struggle for autonomy at the Study Group. End-of-life practices in European end of life in Italy. Marquette’s Elder Advisor. intensive care units: the Ethicus Study. JAMA. 2003;290(6):790-797.

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