In This Issue

Volume 26, Number 3 Summer 2018

In This Issue Feature Articles Ethical Currents Moral Lessons from the Life of Alfie Evans: PAGE 29 Two Ethical Perspectives PAGE 1 Literature Review Tobias Winright, M.Div., Ph.D. PAGE 36 Jason T. Eberl, Ph.D. Fr. Gerald Coleman, PSS, Ph.D. From the Field U.S. Bishops Revise Part Six of the Ethical and Religious Directives PAGE 12 Fr. Charles Bouchard, OP, S.T.D. Nathaniel Blanton Hibner, Ph.D.(c)

International Perspectives The Effect of the Proposed Euthanasia Legislation on Two of Australia’s Most Vulnerable Groups – Aboriginal Communities and the Elderly PAGE 18 Darryl Mackie, S.T.B., M.Th.

People or Profit: A Comparison of Health Care in Brazil and the United States PAGE 25 Fr. Alexandre A. Martins, MI, Ph.D.

Moral Lessons from the Life of Alfie Evans: Two Ethical Perspectives

Editor’s Note: Even though the Alfie Evans case has been resolved, the ethical issues that it raised are still very much alive. We present two different ethical analyses of this case. One is from Saint Louis University Professors Jason Eberl and Toby Winright, and the other is from Fr. Gerard Coleman, P.S.S. of the University of Santa Clara.

WHO WAS ALFIE EVANS?

Due to an unidentified degenerative condition, Alfie Evans (May 9, 2016 - April 28, 2018) was hospitalized continuously since December 2016 at the Alder Hey Children’s Hospital in Liverpool, England. His physicians described his condition as a “semi-vegetative state,” a relatively new category of disorder indicating that the patient has partial preservation of conscious awareness. This classification, also called a “minimally conscious state” (MCS), is a disorder of consciousness distinct from persistent vegetative state (PVS) which is characterized by absence of responsiveness and awareness due to overwhelming dysfunction of the cerebral hemispheres. A person in MCS sustains some interaction with the environment.1 Alfie missed numerous developmental milestones as his condition lasted for 23 weeks. Alder Hey Children’s Hospital said that Alfie had a “catastrophic and untreatable neurodegenerative condition…, his brain was corrupted by mitochondrial disease,”2and continued treatment was “futile.”3

A decision by a British justice ordering that ventilation be discontinued was upheld by both the UK Court of Appeals and the Supreme Court. A three-judge panel of the European Court of Human Rights determined that there was no evident human rights violation and, thereby, ruled the case inadmissible.4

Tobias Winright, M.Div., Ph.D. Jason T. Eberl, Ph.D. Associate Editor, HCEUSA Professor Mader̈ Endowed Associate Professor Gnaegi Center for Health Care Ethics Gnaegi Center for Health Care Ethics Saint Louis University Saint Louis University St. Louis St. Louis [email protected] [email protected]

Fr. Gerald Coleman, PSS, Ph.D. Adjunct Professor, Pastoral Ministries Santa Clara University Santa Clara, Calif. [email protected]

Tobias Winright and Jason Eberl Prelates in the UK also reflected different Respond levels of moral specificity. One bishop Here we are again. Less than a year after the tweeted, “If there is anything at all that can be plight of 11-month-old Charlie Gard and his done, may the Lord enable us by His love parents generated international attention and and grace to effect it”. The Bishops’ divided opinions among Catholic ethicists,5 Conference of England and Wales offered a the parents of another child in the United more general statement “that all those who Kingdom, 23-month-old Alfie Evans, were are and have been taking the agonizing waging a legal battle against the physicians decisions regarding the care of Alfie Evans act with integrity and for Alfie’s good as they entrusted with his care over whether life- 7 support should be continued.6 For more than see it.” a year, Alfie’s respiration had been supported by mechanical ventilation, and his physicians This moral imperative – to act with integrity viewed continued treatment to be “unkind for Alfie’s good -- is at the heart of the issue. and inhumane.” Alfie’s physicians do not appear to have been intentional violators of the Hippocratic Oath. Alfie’s parents disagreed with his physicians, They and the justices who supported their contending that he was still responsive and decision to discontinue life-support saw that his condition was improving. They themselves as protecting Alfie’s “best sought to have Alfie transferred to the interests.” Alfie’s parents and their Vatican’s Bambino Gesù Pediatric Hospital supporters viewed his continued life, no in Rome, where the medical staff was willing matter the degree of neurodegeneration he to provide continued treatment. The Italian suffered, to be intrinsically valuable and government even granted Alfie honorary worth safeguarding at all costs. citizenship to symbolize the country’s willingness to receive and care for him. In the As with the case of Charlie Gard, Alfie’s midst of their attempt to have Alfie released situation prompted strident responses from from Alder Hey and transferred to Bambino the pro-life community, some of whom styled Gesù, his father, Thomas, traveled to Rome themselves as “Alfie’s Army,” camping outside of Alder Hey and at one point to appeal directly to Pope Francis for 8 assistance and specifically asked for “asylum” attempting to storm the hospital. Both these for his family. Just a few days prior, the pope activists and pro-life scholars viewed Alfie’s had publicly commented on Alfie’s situation plight as another example of a secular in his Sunday Angelus address but did not tendency to emphasize “quality of life” over specify what he deemed the outcome should the inherent dignity of each living human be. He described the case as “delicate … very being, no matter their physical or cognitive painful and complex.” After meeting with status. Such is the perspective of Charles Thomas Evans, Pope Francis was more Camosy, associate professor of theology at specific, appealing via Twitter “that the Fordham University, who accuses physicians suffering of [Alfie’s] parents may be heard – and, particularly, acute care physicians such and that their desire to seek new forms of as those in charge of Alfie’s care – of a “bias” towards valuing the lives of disabled patients treatment may be granted.” 9 less than disabled patients do themselves. Camosy rightly warns against a growing trend

of “systematic ableism,” particularly in levels of pain or suffering he may have been Western nations, as evidenced by increasing experiencing: abortion rates of fetuses diagnosed with Down Syndrome and legalized protocols for It is my opinion (and that of euthanizing children based on quality-of-life my intensive care consultant assessments in Belgium and the Netherlands. colleagues), that Alfie has a He calls for renewed Catholic opposition to poor quality of life. He is this secular ethic analogous to the outspoken completely dependent on stance Clemens August von Galen of Munich mechanical ventilation to and other German bishops took against the preserve his life. He has no Nazi T4 euthanasia program, which led to a spontaneous movements, public outcry that contributed to the Nazis cannot communicate and formally abolishing the program, although it continues to have frequent still persisted in a more limited and secretive seizures. I believe that is it way and was a precursor to the large-scale unlikely that Alfie feels pain systematic killings of the Holocaust.10 or has sensation of discomfort but I cannot be completely It is important to emphasize, contrary to one certain of this since Alfie has critic’s interpretation,11 that Camosy’s no way of communicating… reference to Catholic opposition to the Nazi given Alfie’s very poor euthanasia program does not necessarily prognosis with no possible support a claim that the physicians at Alder curative treatment and no Hey promoting systematic euthanization of prospect of recovery the the disabled. Rather, it draws attention to an continuation of active excessive emphasis on “quality of life” intensive care treatment is considerations and the imperative – futile and may well be causing particularly for Catholics – to witness against him distress and suffering. It it. A key difference between the historical is therefore my opinion that it and contemporary examples is that while the is not in Alfie’s best interests Nazis were concerned about racial “purity” to further prolong the current and ending the lives of those perceived as a invasive treatment. It would, “burden” upon society, those who favored in my opinion, be appropriate discontinuing treatment for Alfie were to withdraw intensive care concerned about the burden for him. Their support and provide palliative primary, if not sole, concern was whether care for Alfie for the allowing his continued neurodegeneration remainder of his life.12 would cause undue pain and suffering to him, as opposed to focusing on any putative costs Justice Hayden’s assessment is a far cry from of his continued support to society. Justice the Nazi determination of Lebensunwertes Anthony Hayden, whose initial judgment lebens (“life unworthy of life”).13 What is determined the outcome of the case, more, he mentions “distress and suffering” affirmed that his concern was Alfie’s “poor that continued treatment may have been quality of life,” defined in terms of what causing Alfie, a rationale consistent with Catholic moral teaching on burdens and

benefits; he also cites Alfie’s overall disabled Alfie’s continued life, but also in securing any condition by referring to his dependence on reasonable hope of recovery from his mechanical ventilation, lack of spontaneous neurodegenerative condition.16 Noteworthy movements, inability to communicate, and for their analysis is the fact that a February frequent seizures. 2018 MRI scan showed “the almost total destruction of his brain.” As Udo Schuklenk, Camosy’s above-noted critic, points out, “well-meaning people could While Catholic philosophical anthropology, hold different views on cases like this.” For following St. Thomas Aquinas, holds that instance, one could argue that, if Alfie’s one’s self-conscious, intellective functioning is parents or other supporters were willing to inherently immaterial, the actualization of pay for continued care for him, even if it such functioning exists in the brain during offered no reasonable expectation of one’s embodied life.17 We can thus conclude improving Alfie’s overall condition, then they that Alfie had the capacity for such should have been allowed to do so. intellective functioning because his body continued to be informed by his rational This brings us to the central point of debate soul, but that this capacity was irreversibly among Catholic ethicists: whether continued precluded from further actualization in this life-support or other forms of treatment for life due to the material deficiencies of his Alfie would constitute a burden on him brain.18 That Alfie remained a human person disproportionate to the reasonably expected until he succumbed to bodily death on April benefits of such treatment. We have now 28, 2018, is unquestionable within the moved beyond the “culture war” question of Catholic anthropological framework. quality-of-life versus the intrinsic dignity of Whether the condition leading up to his disabled persons to the more pragmatic death held any hope of recovery – spes question of whether continued treatment salutis – is open to question, and even offered Alfie any hope of recovery, or at least doubtful. This is the basis of Wildes’s and continued life, without introducing undue Paris’s assessment that continued support for pain and suffering. This is the crux of the Alfie constituted extraordinary – i.e., morally Catholic tradition’s well-known distinction optional – care. Furthermore, if Alfie had between morally obligatory (“ordinary”) and maintained some degree of sentient morally optional (“extraordinary”) forms of awareness – and thus potentially “could suffer treatment.14 It is the point upon which increased seizures in transit [to Bambino Catholic ethicists have reasonably disagreed Gesù] which have the potential to cause about both the Charlie Gard and the present further brain damage, together with … pain case, as well as others involving the care of and discomfort” – then continued treatment critically ill newborns and babies.15 could certainly have been construed as disproportionately burdensome to him and For Jesuit ethicists Kevin Wildes, president therefore extraordinary. of Loyola University – New Orleans, and John Paris, Michael P. Walsh Professor of Another pertinent question is whether Alfie – Bioethics Emeritus at Boston College, the if allowed to continue living at Alder Hey or question comes down to the effectiveness of to be transferred to Bambino Gesù – would continued treatment, not only in sustaining potentially have benefited from experimental

treatments. Unlike Charlie Gard, for whose the well-being of the newborn and others.”22 diagnosed condition there was initially an As we have noted elsewhere, in cases such as experimental treatment available –– the Charlie Gard’s, both parents and medical unknown etiology of Alfie’s professionals can make mistakes.23 Courts, neurodegeneration meant that there was no too. In the end, even though it is not available experimental treatment that might absolute, priority should arguably be given to have improved his condition. Furthermore, the parents. the nature of any such possible intervention as “experimental” would render it inherently As Stanley Hauerwas notes -- the Alfie extraordinary. This raises questions about a Evanses and Charlie Gards, their families and document issued by Bambino Gesù entitled, their caregivers – need the accompaniment of “Charter for the Rights of Incurable a committed community of virtue, namely, Children” that includes, among its ten points, the Church, as a “suffering presence” a right to “the best experimental cures.”19 especially for the disabled children and the While parents and medical staff certainly dying.24 It might even require a silent have the right to attempt experimental solidarity and, whatever happens, definitely treatments for severely disabled children, it is entails faithful follow up with the family.25 not morally required of them to do so; in other words, a child does not have a right to Fr. Gerard Coleman Responds an experimental treatment that is deemed to Two recent commentaries bring sharp and be either medically futile, disproportionately contrasting focus to the case of Alfie Evans. burdensome, or inordinately expensive – as 20 The international Catholic weekly The Wildes, Paris, and Camosy all acknowledge. Tablet editorialized, “Sometimes the point is reached when further medical intervention, Of course, a key question has to do with who even if it might prolong the life of the patient, decides. As ethicist Michael Panicola notes, becomes disproportionate to any possible parents have the most at stake and are usually benefit. There is no legal or moral obligation motivated by love for their offspring. They to keep a patient alive by extraordinary want what is best for them. At the same time, means, when all hope is gone and treatment they might not understand well the medical is becoming overly burdensome. But considerations, and they might be subjectively knowing when that point has been reached “too involved emotionally to make 21 sometimes requires an unbearably difficult reasonable decisions.” Medical judgment.”26 professionals possess experience and knowledge and may be less emotionally In America’s leading conservative magazine involved and more objective, but they too are National Review, Wesley J. Smith opined human, have feelings, and make decisions that Alfie was “forced off life support by through a moral lens whether they realize it doctors, bioethicists, and judges and denied or not. No facts, including medical ones, are the right to have care decisions made by his self-interpreting. As for the courts, although parents… If Alfie had been a royal baby, “their judgment would be, for the most part, …he’d still be on life support if that was what objective and not rushed,” they may be “too his parents wanted. It is remarkable that distant from the situation and may not be bioethicists and health-care honchos feel the able to respond as quickly as is required for

need to push the relatively few dissenters out almost entirely eroded “leaving only water of the lifeboat.”27 and spinal fluid.”

Two critical issues are at stake: when is Alfie’s parents wanted him moved to another treatment no longer beneficial, and what hospital for further diagnosis and treatment. rights do parents have in making treatment They believed he had shown signs of decisions for their children? improvement as they watched him stretching, coughing, swallowing, and yawning. They Involvement of The Courts wanted to “maintain his life regardless of whether a cure could be found.”30 Alfie’s Knowing of no effective therapy for this father believed that his son’s worsening deteriorating neurological condition, Alfie’s condition was due to his physicians’ decision physicians recommended ending treatment, to reduce his dosage of the anti-epileptic drug while accompanying him with palliative and Clobazam from 14.1 mg to 11.8 mg. He saw compassionate care. In maintaining this, they Alfie as “my healthy young boy, who is followed the teaching of the treatise in the undiagnosed [and] who is certainly not Hippocratic Corpus entitled The Art. There, dying,” despite frequent seizures, a urine medicine is defined as having three roles: infection, and compromised lung doing away with the sufferings of the sick, functioning. lessening the violence of their diseases, and refusing to treat those who are overmastered With the assistance of the Italian ambassador by their disease, realizing that in such a case to England and Wales, Alfie was granted medicine is powerless. Italian citizenship with the hope he might be transferred to the Babino Gesù Pediatric For months, his parents, Thomas Evans and Hospital in Rome.31 Mr. Justice Hayden Kate James, both in their early twenties, had rejected the bid to take Alfie to Italy as “there been locked in a legal battle with United was virtually nothing left of his brain.” When Kingdom (UK) courts that ending treatment his ventilator was removed on April 23, was not in Alfie’s best interest. As in the 2018,32 the hospital issued a statement that its Charlie Gard case,28 the family lost their “top priority remains in ensuring Alfie appeals at all levels including the Court of receives the care he deserves to ensure his Appeals, the Supreme Court, and the comfort, dignity and privacy…”33 European Court of Human Rights. Parental Rights Mr. Justice Anthony Hayden of the High Court of England and Wales endorsed an Perhaps the most agonizing element in this end-of-life-plan for Alfie drawn up by drama concerns Alfie’s “best interest.” hospital specialists. He described Alfie as “a Michael Dougherty argued in the Gard case much-loved little boy”29 but accepted the that the state should “get out of the way of the medical judgment that further treatment was parents trying to act in the best interest of the not in Alfie’s best interest. Hayden wrote that child.”34 This remains a crucial point in this his legal opinions represented “a consensus case.35 In Britain, cases of great importance of medical expertise” that Alfie’s brain had are heard in the High Court whose 108 members are appointed by the Crown from

among the most respected lawyers in Ashley and O’Rourke reach the same England and Wales. In the Evans case, under conclusion: “…only in cases of conflict where British law, disputes between families and one of the parties believes that the rights of physicians are not to be resolved on the the [incompetent] patient are imperiled personal predilections of the presiding judge should there be recourse to the courts. or the reasonableness of the arguments put Ordinarily … the physician should counsel forth by family or the physicians, but on “the [the parents] by giving a medical opinion as independent and objective judgement of the to risks and benefits, and the [parents] should court” on the best interest of the non- make the decision on the basis of the competent patient. patient’s best interest, that is, to decide what is beneficial for the patient, given the In the United States, there is no such circumstances that prevail.”40 uniform norm. As seen in the well- documented case of Jahi McMath,36 Disproportionate Means of Treatment American courts are unwilling to order cessation of life-sustaining treatment over the The Declaration on Euthanasia presents the protests of a caring family. The UK’s church’s authoritative statement on care of approach is different, vesting overriding the dying: “For such a decision to be made, control in the court exercising its account will have to be taken of the independent and objective judgment in a reasonable wishes of the patient and the child’s best interest. This approach is patient’s family, and also the advice of designed to safeguard infants and children doctors who are specially competent in the from the possibility that parents regarded matter [italics added]. The latter may in their children as possessions, or when particular judge that the investment in sentimentality overshadowing objectivity.37 instruments and personnel is disproportionate to the results foreseen; they Respected bioethicist John Paris, S.J. notes may also judge that techniques applied that in the United States “it is the best impose on the patient strain or suffering out interests of the patient, not the desires of the of proportion with the benefits which he or family or the personal predilections of the she gains from the techniques.”41 physician, which ought to prevail… Infants … are patients in their own right [and] it is the This is a summary of centuries of consistent child’s best interests, and those alone, that Catholic moral analysis on the care of the are to be the focus and goal of medical sick and dying, and finds reiteration in St. treatment decisions made on behalf of John Paul II’s Evangelium Vitae: “To forego children.”38 This judgment respects the role extraordinary or disproportionate means is of parents in making critical decisions about a not the equivalent of suicide or euthanasia.”42 medically compromised child, while insisting When Pope Francis met with Alfie’s father that their decisions, based on the physician’s on April 18, 2018, he expressed diagnosis and prognosis, be based on the best “admiration” and “courage” for Mr. Evans interest of their child as a sacred and and likened him to “the love that God has for inviolable human being.39 human beings in that he never gives them up for lost.” The Pope’s pastoral expression is not a redirection of the church’s traditional

teaching on the appropriate medical limitations of what can be done.”47 This treatment of the dying, but a prayer for Alfie judgment was repeated in the official and those who at the hour of death are in statement issued by Archbishop Paglia for need of God’s compassionate mercy, and an the Vatican’s Academy for Life: “The proper expression of support for parents treated as question raised in this and any other bystanders by the law. This should not be unfortunate similar case is this: What are the confused with doctrinal teaching. best interests of the patient? We must do what advances the health of the patient, but The Catechism of the Catholic Church we must also accept the limits of medicine provides helpful guidelines: “Discontinuing and … avoid aggressive medical procedures medical procedures that are burdensome, that are disproportionate to any accepted dangerous, extraordinary, or results or excessively burdensome to the disproportionate to the expected outcome patient or family.”48 These statements are also can be legitimate; it is the refusal of ‘over- applicable to the Alfie Evans case. zealous’ treatment. Here one does not will to cause death; one’s inability to impede it is Adverse Responses merely accepted. The decisions should be made by the patient if he is competent and One commentator claims that Alfie’s case able or, if not, by those legally entitled to act caused a “sense of outrage.” This sentiment for the patient, whose reasonable will and needs necessary contextualization. In mid- legitimate interest must always be respected.” April, Alfie’s father encouraged supporters to (no. 2278, italics added)43 Clearly, Catholic gather at the hospital for a protest, suggesting teaching highlights the limits on what medical that they call themselves “Alfie’s Army.” treatments must be provided to patients for This wave of protests in and around the whom there is no realistic medical hospital caused the hospital to restrict the expectation of benefit.44 number of visitors due to the hostile atmosphere created. The Chief Nurse Renowned Jesuit moralist Gerald Kelly claimed that they “caused significant thoroughly surveyed the church’s long- disruption, stress and anxiety to other standing teachings on care for the dying. families and the staff.” This disruption Kelly found that approved authors held that included people entering the Pediatric “no remedy is obligatory unless it offers a Intensive Care Unit (PICU) without reasonable hope of checking or curing a permission, shouting, filming patients and medical condition.” He concluded that “no visitors without their consent and generally one is obliged to use any means if it is does creating a “threatening, intimidating, and not offer a reasonable hope of success in unsafe environment.” The hospital restricted overcoming that person’s condition.”45 This visitors mainly to Alfie’s parents. The same conclusion is reiterated by Benedict hospital’s Trust Chair Sir Henry Henshaw Ashley and Kevin O’Rourke.46 said in an open letter that the “staff had been the subject of unprecedented personal abuse In light of this moral tradition, the that has been hard to bear.”49 The Conference of Catholic Bishops of England Conference of Catholic Bishops of England and Wales wrote in the Gard case, “We do, and Wales released a statement fully sometimes, however, have to recognize the supporting Alder Hey Children’s Hospital

and “those who are and have been taking the professionalism and dignity” and expresses agonizing decisions regarding the care of gratitude to “Alfie’s Army,” but asks them Alfie Evans.”50 now “to go home.” Sadly, some interpreted this statement as written by the hospital and When Alfie’s ventilator was removed, amounted to nothing more than a “hostage acrimonious reaction ensued. Alfie’s father note.” called it an “execution,” saying that “doctors hate us and treat us like criminals,51 the Italian A positive note was sounded by Steven ambassador named it “murder,” a prolife Woolfe, British Member of the European advocate described it as “legalized killing, Parliament, and the group “Parliament euthanizing Alfie as one would a pet dog,” Street” that plan to initiate changes in UK law and Priests for Life issued a prayer saying to help children and their parents in the that Alfie’s doctors are “blind, “pretend to be future in the hope of preventing parents from God,” and are “misguided.” The prayer being “sidelined” in government-funded made the astonishing statement that “death hospitals. “We demand a change in the law could [never] be in the best interest of a to restore the rights of parents in such child,” a clear contradiction to the church’s decisions… Now is the time to act. We moral tradition about disproportionate and cannot have another baby, another family … futile treatment. The President of go through the struggle and torment the LifeSiteNews charged that the hospital with Evans family have. It’s time for Alfie’s Law.”54 “murder of an innocent child” and claimed that their statements about Alfie were 1 https://merckmanuals.com-vegetativestate 2 “diabolical,” and likened to a “lunatic.”52 See Gerald D. Coleman, “Guarding Charlie Gard, “Health Progress November-December 2017, 54-58. 3 https://www.liverpoolecho.co.uk.alfie-evans These reactions demonstrate a remarkable 4 For an overview of Alfie’s case, see “Who Was Alfie ignorance of the Church’s moral tradition Evans and What Was the Row over His Treatment?” about disproportionate treatment. BBC News (28 April 2018): http://www.bbc.com/news/uk-england-merseyside- 43754949. Conclusions 5 Tobias Winright, “On Charlie Gard,” Health Care Ethics USA 25, no. 3 (Summer 2017): 1-11. On April 25, 2018, a dramatic change 6 For an overview of Alfie’s case, see “Who Was Alfie occurred when Mr. Evans, after a meeting Evans and What Was the Row over His Treatment?” with Alfie’s doctors, read a message on behalf BBC News (28 April 2018): http://www.bbc.com/news/uk-england-merseyside- of himself and his wife, “We are very grateful 43754949. and we appreciate all the support we have 7 Charles Collins, “Pope Francis Asks that Alfie Evans received from around the world… We would Be Allowed to ‘Seek New Forms of Treatment,’” now ask you to return back to your everyday CRUX (23 April 2018): https://cruxnow.com/church- lives and allow myself, Kate and Alder Hey in-uk-and-ireland/2018/04/23/pope-francis-asks-that- alfie-evans-be-allowed-to-seek-new-forms-of-treatment/. to form a relationship, build a bridge and 8 “Alfie Evans: Claims Protest Makes Hospital Visits walk across it… In Alfie’s interests we will ‘Scary,’” BBC News (16 April 2018): work with his treatment team on a plan that http://www.bbc.com/news/uk-england-merseyside- provides our boy with the dignity and 43781041; “Alfie Evans: Protesters Try to Storm comfort he needs.”53 The statement thanks Alder Hey Hospital,” BBC News (23 April 2018): the staff of the hospital “for their

http://www.bbc.com/news/uk-england-merseyside- 21 Panicola, “Care of Critically Ill Newborns,” 136. 43867132. 22 Ibid., 137. 9 Charles C. Camosy, “Alfie Evans and Our Moral 23 Winright, “On Charlie Gard.” Crossroads,” First Things (25 April 2018): 24 Stanley Hauerwas, Suffering Presence: Theological https://www.firstthings.com/web- Reflections on Medicine, the Mentally Handicapped, exclusives/2018/04/alfie-evans-and-our-moral- and the Church (Notre Dame, IN: University of Notre crossroads . Dame Press, 1986), 190. See also Hauerwas, 10 For further information on the Nazi euthanasia “Salvation and Health: Why Medicine Needs the program, see Michael S. Bryant, Confronting the Church,” in Theology and Bioethics: Exploring “Good Death”: Nazi Euthanasia on Trial, 1945-1953 Foundations and Frontiers, Earl Schelp, ed. (Boulder: University Press of Colorado, 2005), ch. 1. (Dordrect: D. Riedel Publications, 1985) 205-225. 11 Udo Schuklenk, “Bioethics Culture Wars – 2018 25 In a recent presentation for my (Tobias Winright’s) Edition: Alfie Evans,” Bioethics 32 (2018): 270-1. students at Saint Patrick’s College in Maynooth 12 https://www.judiciary.gov.uk/wp- Ireland, Catholic priest and ethicist Michael Shortall content/uploads/2018/02/alder-hey-v-evans.pdf. spoke about Hauerwas’s notion of “suffering 13 Pace the assessment proffered by Matthew Shadle, presence” in connection with the initial seven days and “The Fatal Flaw in the Alfie Evans Decision,” Catholic nights of silence from Job’s friends, “for they saw that Moral Theology (27 April 2018): his suffering was very great” (Job 2:11-13), that is, https://catholicmoraltheology.com/the-fatal-flaw-in-the- before they ruined it by subsequently trying to explain alfie-evans-decision/. why and attribute blame. 14 For elucidation of this distinction, see Congregation 26 “Parents’ Rights Must be Recognized,” The Tablet, for the Doctrine of the Faith, Declaration on April 28, 2018, 2. Euthanasia (5 May 1980), §IV: 27 https://www.nationalreview.com/corner/alfie-evans- http://www.vatican.va/roman_curia/congregations/cfait case-medical-authoritarianism h/documents/rc_con_cfaith_doc_19800505_euthanasi 28 See Coleman, “My Name if Charlie Gard,” Ethics a_en.html. and Medics 42:11 (2017), 1-4. 15 See Michael Panicola, “Care of Critically Ill 29 LifeSiteNews, April 11 and 12, 2018. Newborns,” in Health Care Ethics: Theological 30 https://www.nationalreview.alfie-evans. Foundations, Contemporary Issues, and Controversial 31 Hospitals in Milan, Munich and Poland also offered Cases, rev. ed. (Winona, MN: Anselm Academic, to take Alfie. His father made a personal plea to Pope 2011), 124-155, at 138-143. Francis who named Bishop Francesco Cavina of Carfi 16 Kevin Clarke, “The Case of Alfie Evans: What Does as his intermediary with the family. Subsequently, Catholic Tradition Say?” America (26 April 2018): Vatican-linked Bambino Gesu Pediatric Hospital in https://www.americamagazine.org/politics- Rome stated its willingness to receive the baby. Cavina society/2018/04/26/case-alfie-evans-what-does-catholic- stated that Alfie’s move to the hospital in Rome tradition-say. “should not be impeded” and Italian newspaper La 17 See Jason T. Eberl, “Aquinas on the Nature of Nuova Busola Quatidiana reported that the Pope Human Beings” Review of Metaphysics 58, no. 2 opened diplomatic channels for Alfie’s transfer. Alfie’s (2004): 333-65. father met personally with Pope Francis on April 18, 18 For further elaboration of this argument in the 2018 and told him that the courts had called his son’s context of patients in a properly-diagnosed persistent life futile. In fact, however, the courts, following the vegetative state, see Jason T. Eberl, “Extraordinary hospital’s assessments, judged his ongoing treatment Care and the Spiritual Goal of Life: A Defense of the futile, not his life. View of Kevin O’Rourke, O.P.” The National 32 Before the ventilator was removed, Alfie was given Catholic Bioethics Quarterly 5:3 (2005): 491-501. two drugs, Midazolam (and anxiolytic) and Fentanyl 19 Claire Giangravé, “Losers in Charlie Gard, Alfie (an analgesic). Evans Cases Look to the Future,” CRUX (29 May 33 Professor Dominic Wilkinson, consultant 2018): https://cruxnow.com/global- neonatologist at the John Radcliffe Hospital and church/2018/05/29/losers-in-charlie-gard-alfie-evans- director of medical ethics at the Oxford Uehiro cases-look-to-the-future/. Centre for Practical Ethics at the University of Oxford, 20 See Charles C. Camosy, Too Expensive to Treat? supported the hospital’s decision: “Given the nature of Finitude, Tragedy, and the Neonatal ICU (Grand Alfie’s condition, the doctors have wanted to provide Rapids: Eerdmans, 2010). him with palliative care, focused on his comfort, and Copyright© 2018 CHA. Permission granted to CHA‐member organizations and Saint Louis University to copy and distribute for educational purposes. Health Care Ethics USA | Summer 2018 10

focused on making his remaining time as good as 48 possible.” http://en.radiovaticana.va/news/2017/06.29/vaticans_ac 34 ademy_for_life_issues_statement_on_charley_gard/13 http://www.nationalreview.com/article/449159/vaticans 22138. -charlie-gard-statement-sides-statye-over-family. 49 http://www.bbx.com/news/uk-england-merseyside- 35 See J Paris, J Ahluwalia, B Cummings, M Moreland, 4391259. D Wilkinson, “The Charlie Gard Case: British and 50 LifeSiteNewsonline, April 12, 2018. American Approaches to Court Resolution Over 51 https://www.mirrow.co.uk-news/live-updates- Medical Decisions, “Journal of Perinatology 37 toddlers-alfie-evans-12416526. (2017), 1268-1271. 52 LifeSiteNewsonline, April 25, 2018. 36 Winkfield v Children’s Hospital Oakland et al. US 53 http://www.bbc/news/uk-england-merseyside- District Court for Northern California, December 30, 43914259. 2013. 54 https://www.express.co.uk/news/uk/9516890/Alfie- 37 Evans-update-news-baby-release-free-Adler-Hey- https://publications.parliament.uk/pa/cm198889/cmha Hospital-Liverpool. nsrd.1989-11-16/Debate-1.html. 38 Paris, 1270. 39 B Ashley, J Deblois, and K O’Rourke, Health Care Ethics, Washington: Georgetown University Press, 5th ed., 2006, 191-192. 40 Benedict M. Ashley and Kevin D. O’Rourke, Health Care Ethics, Washington, D.C.: Georgetown University Press, 4th ed., 1997, 429. 41 Congregation for the Doctrine of the Faith, Declaration on Euthanasia, 1980, section 4. 42 John Paul II, Evangelium Vitae, March 25, 1995, no. 65 43 This same teaching appears in the Ethical and Religious Directives for Catholic Health Care Services, nos. 56 and 57. 44 See J Paris, M Moreland, B Cummings, “The Catholic Tradition on the Due Use of Medical Remedies: The Charley Gard Case,” Theological Studies 79:1 (2018), 165-181. 45 Gerald Kelly, “The Duty of Using Artificial Means of Preserving Life,” Theological Studies 11 (1950), 203-220. 46 Benedict M. Ashley and Kevin D. O’Rourke, 417- 431. 47 https://www.catholic-ew.org.uk/Home/News/Baby- Cahrlie-Gard-Final-Ruling. A large number of Brazilian Bishops released a video and letter on April 21, 2018: “Life is sacred and inviolable, such that it may not, on any pretext, be vilified or suppressed.” The United States Conference of Catholic Bishops asked for prayers that Alfie’s family be allowed “to seek new forms of treatment” and that “the dignity of Alfie’s life and all human life, especially those who are most vulnerable, be respected and upheld.”

U.S. Bishops Revise Part Six of the Ethical and Religious Directives An Initial Analysis by CHA Ethicists1

On June 15, 2018 following several years of to a question it had received from the U.S. discussion and consultation, the United bishops in April 2013. The full text can be States Bishops discussed and approved the found here. Sixth Edition of the Ethical and Religious Directives for Catholic Health Care Services. As Peter Cataldo, Ph.D., senior vice The vote was nearly unanimous. president of theology and ethics at Providence-St. Joseph Health, said at the Revisions are all found in Part Six, time, “While the CDF did not directly “Collaborative Arrangements with Other respond to the question, seeing it as a Health Care Organizations and Providers.” concrete application of established moral This title differs slightly from the title used in principles, it forwarded to the USCCB a set the Fifth Edition, which was “Forming New of 17 principles to guide the forming of Partnerships with Health Care Organizations partnerships with non-Catholic organizations” and Providers.” [and] intended to be of assistance to the bishops of the United States. (Health Care The revision had two primary purposes. The Ethics USA, “CDF Principles for first was to update the Directives to reflect the Collaboration with Non-Catholic Health growing number and complexity of Care Entities: Ministry Perspectives,” collaborative arrangements taking place Summer 2014). Dr. Cataldo’s analysis can throughout health care. The revisions are in be found here. clear continuity with previous editions of the ERDs and with the Catholic moral tradition. The Sixth Edition went through several In our view, they do not contain any new drafts. During the drafting process, the teaching. Rather they are an attempt to USCCB through its Committee on Doctrine provide clarification and more explicit sought input from CHA, system ethicists and direction to those who are considering other stakeholders. The Sixth Edition collaborative ventures in order to increase contains a few minor changes in language, as efficiency, quality, range of services or access well as five new Directives. Here is a to health care. The revised Directives summary with comments in italics. New continue to support the value of collaborative Directives are shaded. arrangements in general. The Introduction The second goal of the revisions is to reflect “Principles for Collaboration” that were The Introduction to Part Six is an overview issued by the Congregation of the Doctrine of of the content. It is much longer than the the Faith on February 17, 2014 in response Introduction to Part Six in the Fifth Edition.

The new Introduction differs in several arrangements should be assessed to important ways: reflect the principle of cooperation.

 It is more positive in tone. The new Directives Introduction begins by highlighting

“the unique and vitally important #67. Each diocesan bishop has the ultimate opportunities” collaborative responsibility to assess whether collaborative opportunities present. arrangements involving Catholic health care providers operating in his local church  It expresses preference for involve wrongful cooperation, give scandal, collaborative arrangements among or undermine the Church’s witness. In Catholic organizations which is fulfilling this responsibility, the bishop should mentioned in Vatican Principle #7. consider not only the circumstances of his local diocese, but also the regional and  It is clear about the possibility of national implications of his decision. scandal, but essentially maintains that #68. When there is a possibility that a some risk is appropriate for the sake prospective collaborative arrangement may of the opportunities, especially the lead to serious adverse consequences for the common good. identity or reputation of Catholic health care services or entail a risk of scandal, the  Cites the common good as a reason diocesan bishop is to be consulted in a timely for collaborative arrangements three manner. In addition, the diocesan bishop’s times. The term did not appear at all approval is required for collaborative in the Fifth Edition. arrangements involving institutions subject to his governing authority; when they involve  Includes a fuller introduction to institutions not subject to his governing formal and material cooperation and authority but operating in his diocese, such as explains the difficulty of those involving a juridic person erected by distinguishing licit from illicit material the Holy See, the diocesan bishop’s nihil cooperation. Allows that there may obstat is to be obtained.

be legitimate disagreements among Comment: Numbers 68 and 69 experts in calculating what level of affirm the unique role of the bishop cooperation is acceptable. The in assessing cooperation, scandal, description of cooperation differs integrity of the Church’s witness and somewhat from other descriptions. the importance of consulting the We will explore this more fully in a bishop about arrangements that affect later column. Catholic identity or reputation of the ministry “in a timely manner.” This  Stresses the fact that collaboration seems to mean sooner rather than with those who do not share our later and also regularly as negotiations moral conviction offers many proceed. opportunities but always carries a risk of scandal. Both new and existing

The Directive also distinguishes headquarters is located to “initiate between approvals given for collaboration” and seek consensus institutions under his control from among bishops affected by new those pertaining to institutions of arrangements. This reflects language pontifical right (i.e., those established in Vatican Principle #17. by the Holy See). #67 introduces the phrase “undermine the Church’s #70. Catholic health care organizations are witness” as a negative criterion for the not permitted to engage in immediate first time. It appears twice in #71 and material cooperation in actions that are again in #76. The phrase is not intrinsically immoral, such as abortion, found in the Fifth Edition, which cites euthanasia, assisted suicide and direct only scandal (#71) but it appears in sterilization. Vatican Directive #10, when it describes uses of authority that Comment: #70 reiterates the “diminish the entity’s – and the prohibition on immediate material Church’s – prophetic witness to the cooperation in acts that are deemed Faith.” to be intrinsically evil. The list of examples is the same as in previous #69. In cases involving health care systems editions. Accompanying footnote that extend across multiple diocesan #48 is exactly the same as #44 in the jurisdictions, it remains the responsibility of Fifth Edition. the diocesan bishop of each diocese in which the system’s affiliated institutions are located #71. When considering opportunities for to approve locally the prospective collaborative arrangements that entail collaborative arrangement or to grant the material cooperation in wrongdoing, Catholic requisite nihil obstat, as the situation may institutional leaders must assess whether require. At the same time, with such a scandal2 might be given and whether the proposed arrangement, it is the duty of the Church’s witness might be undermined. In diocesan bishop of the diocese in which the some cases, the risk of scandal can be system’s headquarters is located to initiate a appropriately mitigated or removed by an collaboration with the diocesan bishops of explanation of what is in fact being done by the dioceses affected by the collaborative the health care organization under Catholic arrangement. The bishops involved in this auspices. Nevertheless, a collaborative collaboration should make every effort to arrangement that in all other respects is reach a consensus. morally licit may need to be refused because of the scandal that might be caused or Comment: This new directive because the Church’s witness might be recognizes the fact that many systems undermined. have ministries in a number of dioceses and tries to balance the Comment: #71 notes the risk of rights and responsibilities of the local scandal even in cases of licit ordinary where the collaboration cooperation. It allows that in some actually occurs with the “regional and instances the possibility of scandal national” implications mentioned in can be reduced by explanation and #67. It directs the bishop of the draws on language used in Vatican diocese in which the system’s Principle #10. As in #67, this

Directive cites both “scandal” and calls for automatic re-evaluation of “because the Church’s witness might existing arrangements but only be undermined” as reasons to avoid routine periodic review as is our collaboration. It is not clear whether practice now. It seems the bishop these two are the same or if may ask for a new review of an undermining the Church’s witness existing arrangement, or a provision implies a new criterion. It seems to of an existing arrangement. us that scandal has a negative effect on someone else (e.g., leads an #73. Before affiliating with a health care observer into sin), whereas entity that permits immoral procedures, a “undermining the Church’s witness” Catholic institution must ensure that neither harm’s the Church’s integrity, its administrators nor its employees will whether or not there is any direct manage, carry out, assist in carrying out, effect on others. make its facilities available for, make referrals for, or benefit from the revenue generated by This Directive omits mention of immoral procedures. some of the specific justifications for cooperation in Vatican Principle #5, Clarifies the responsibility of the viz., “the institution must be under Catholic entity to assure that illicit grave pressure to cooperate.” It says cooperation is avoided at all levels of that gaining financial advantage or organization and specifies in greater financial stability do not constitute detail what the Fifth Edition referred grave pressure, but the ability of the to in #72 as “what is in accord with institution to survive and carry out its the moral principles governing mission do. cooperation.” Reference to administrators and employees reflects #72. The Catholic party in a collaborative Vatican Principle #1, which says that arrangement has the responsibility to assess cooperation “is ultimately about the periodically whether the binding agreement is actions of individual human beings,” being observed and implemented a way that and #9, which specifically mentions is consistent with the natural moral law, administrators and employees. The Catholic teaching and canon law. prohibition on referrals needs to be carefully explained so that we do not Comment: This Directive states the abandon patients. need to periodically reassess cooperative agreements for #74. In any kind of collaboration, whatever consistency with “natural moral law, comes under the control of the Catholic Catholic teaching and canon law.” institution – whether by acquisition, This differs from #72 in the Fifth governance, or management – must be Edition, which required only operated in full accord with the moral consistency “with Catholic teaching.” teaching of the Catholic Church, including We do not believe that this Directive these Directives. nor the mention of “arrangements that already exist” in the Introduction Requires “full accord” with moral is more restrictive than the Fifth teaching and the ERDs for Edition, and we do not believe that it organizations under the control of the

Catholic institution, whether they ethical principles regarding health care acquire, govern or manage them. The articulated by the Church should make their term “full accord” does not appear in opposition to immoral procedures known the Fifth Edition, but seems clearly and not give their consent to any decisions implied in #72 “in a way that is proximately connected with such procedures. consistent with Catholic teaching” and Great care must be exercised to avoid giving in #69 “in accord with the moral scandal or adversely affecting the witness of principles governing cooperation.” the Church. We believe this is a reiteration of the teaching in the Fifth Edition rather Comment: This new Directive clarifies the than something new. At least in some responsibility of representatives of a Catholic cases, if there was “full accord” with institution on governing boards of non- the ERDs, there would be no issue of Catholic organizations and stipulates that they cooperation. must distance themselves from actions that are immoral or that may appear to be so. #75. It is not permitted to establish another Vatican Principle #11 says that the statutes of entity that would oversee, manage, or such an institution must “isolate” the perform immoral procedures. Establishing representatives of the institution from such such an entity includes actions such as policy decisions. Board members would drawing up the civil bylaws, policies, or need to decide about whether they should procedures of the entity, establishing the cast a negative vote, abstain, or recuse finances of the entity, or legally incorporating themselves from the discussion entirely. the entity. #77. If it is discovered that a Catholic care Comment: #75 prohibits any institution might be wrongly cooperating with involvement in the creation of immoral procedures, the local diocesan another entity that would perform bishop should be informed immediately and immoral procedures. This Directive the leaders of the institution should resolve reflects Vatican Principle #12, which the situation as soon as reasonably possible. says that a system or institution engages in formal cooperation with Comment: This new Directive seems evil by “setting up an administrative to allow anyone to discover wrongful body” that will oversee the provision cooperation and report it. This of immoral services or by setting up possibility was not mentioned in the “an entity such as a clinic” that will be Fifth Edition, but may allude to some engaged in immoral procedures. We cases in which a physician, nurse or must also be aware that even if we do media outlet alleges illicit not participate in the establishment of cooperation. such an entity, we would have to explain to those who do what the The language differs from that found limitations on our involvement are. Vatican Principle #14, which says the institution must “extricate itself from #76. Representatives of Catholic health care this situation at the earliest institutions who serve as members of opportunity.” The Directive does not governing boards of non-Catholic include language from Vatican organizations that do not adhere to the Principle #16 which says that if a

Catholic institution extricates itself from the direction of another system, it must “do what it can to ensure that the system is left adhering as closely as possible to the principles of the natural moral law.”

Conclusion

The Conclusion is identical to the Conclusion in the Fifth Edition. It places these directives in a Scriptural and eschatological light by reminding the reader that Jesus healed, that this healing was a sign of our final healing and that the special “guests” of Jesus’ attention were the poor, the crippled, the lame and the blind.

C.B. and N.H.

1 We do not consider this analysis to be either exhaustive or definitive. We invite others to submit additional comments, analyses, or questions about the revised Part Six. We will publish them in the Fall issue. 2 See Catechism of the Catholic Church: “Anyone who uses the power at his disposal in such a way that it leads others to do wrong becomes guilty of scandal and responsible for the evil that he has directly or indirectly encouraged” (no. 2287).

“The Effect of the Proposed Euthanasia Legislation on Two of Australia’s Most Vulnerable Groups – Aboriginal Communities and the Elderly.”

This is a version of a presentation given at the 2018 Ethics Colloquium on Vulnerability and Health Care.

Darryl Mackie, S.T.B, M.Th. Mission Integration Manager St. Vincent’s Private Hospital Sydney Chaplain Aboriginal Catholic Ministry Archdiocese of Sydney [email protected]

Introduction Roman Catholic. Due to extreme temperatures, 70 percent of the population Like most Western countries in the world, chose to live along the eastern seaboard.2 Australia is also facing challenges around the Today, the lifestyle in Australia reflects both question of the right to die through its Western origins and multiculturalism, euthanasia.1 Euthanasia calls us to reflect on having been enriched by settlers from over the meaning of life and care for the sickest 200 nations. Over the years, Australia’s and most vulnerable within our society. It lifestyle and attitudes to faith, life, dying and further challenges us to see how society will death have undergone cultural protect them. For our predominately still transformation. These form part of the shift Christian country, when reflecting upon the in attitude towards euthanasia. meaning of life, we are reminded in In November 2017, Victoria, the second Scripture, “I came that they may have life, largest populous state of Australia, was and have it abundantly.” (John 10:10b) What successful in passing a Conscience Bill is life? What is death? What is its meaning through Parliament entitled, “The Voluntary and value? What environment allows for full Assisted Dying Bill 2017”.3 A similar Bill had human flourishing in the context of family not been successful since the Northern and community? Territory Parliament passed legislation back in 1995. However, due to a legal technicality Australia Today this Bill was overturned in 1997.4 At the time of writing, other states are currently In the last census of 2016, Australia was attempting to emulate Victoria. So far, none estimated to have a population of 23.4 has been successful but it is only a matter of million people, with 52 percent identifying as time before other states follow suit. Christian and 22.6 percent identifying as

Development of the “Euthanasia Mentality” patient therefore represent interferences with the right to privacy.”8 A number of other influences have developed and nurtured what I would call a The Power of Language: In a postmodern “Euthanasia mentality,” a societal change of world, language is often reality. Use of such view on killing someone which runs parallel words as poison, suicide, and homicide to a wider acceptance of suicide. These carry enormous emotional and social include: stigma. Support seems to vary for Euthanasia on what language is used, and Lack of Palliative Care: Palliative care has consequentially driven a move to the focuses on improving the quality of life and more politically correct term Voluntary alleviating pain for those who are dying. Assisted Dying.9 In the U.S. the former Good palliative care is holistic care of the Hemlock Society is now known as psychological, social, spiritual and physical “Compassion and Choices.” needs of the individual and their family, which should mean that euthanasia is Trust in Health Services and Physicians: unnecessary. Due to the size of the country Trust is a powerful healing tool when you and limited resources, palliative care in are sick. To ask medical teams to go against Australia lags most other countries. Access their role as healers would undermine trust to good palliative care services remains within the community. As the Australian largely dependent on patient location and Medical Association (AMA) in its socioeconomic status. Many rural areas rely submission to the inquiry on euthanasia on general practitioners and community stated, “This conflicted with the basic nurses for care, where a large proportion ethical principles of medical practice…such are not appropriately trained in the a [changing of the] law would undermine provision of palliative care. Some services the healing reputation of the medical have been described as being akin to those profession and trust in them not to hurt or in the 1960s.5 A recent positive step has damage their patients, as espoused by the been testing the use of medical cannabis in ancient Hippocratic Oath.” The AMA palliative care. recommendation is for increased funding for palliative care as this would reduce the Human Autonomy / Subjectivism: perceived demand for assisted suicide and Autonomy is defined as the capacity to be euthanasia. Some doctors see euthanasia as valued in so far as its exercise makes for the a great temptation to a cash strapped health well-being and flourishing of the human department.10 beings who possess it.6 Australians pride themselves in their autonomy in life and in Malthusian Theory: This theory outlines their health care decisions. It is common to that if the natural tendency was for hear the statement that “no one has the populations to grow without end, food right to tell me what I should do with my supply would run out against the limit of life or my body and it’s my right to die with finite land.11 Recent government policy in dignity.”7 The recent Australian Human Australia has alluded to this principle with Rights Commission report on euthanasia thoughts that large arrivals of refugees by states that society’s “obligation to protect boat escaping war-torn areas of Syria and life must be balanced against the right to Afghanistan would mean less food supplies personal autonomy which is contained for the Australian population. This within the right to privacy… and any refusal principle is also reflected in the recent to allow passive Euthanasia or assisted movie Downsizing by Paramount Pictures. suicide despite the express wishes of the Pope Francis’ ongoing conversations allude

to neo-Malthusianism, which he sees as a ownership of what was considered selfish and irresponsible response of the uninhabited by a recognisable people with world's rich toward their poor brothers and any recognisable structure or laws (Terra sisters. In Pope Francis' view, population- Nullus).16 This event was to change control programs are nothing more than an Aboriginal history forever. It created attempt to eliminate poverty by eliminating intergenerational trauma, mistrust and the people.12 death of many. Intergenerational trauma and mistrust is a result of the colonisation Church Is Losing Moral Authority: The which saw disease and policies of “kill the Australian Census of 2016 saw a significant savages” reducing the population. The first decline from formal religious traditions with half of the twentieth century involved the a third of the population claiming to be forcible removal of children into either spiritual or having no religion (a rise government and church missions for the of 8%). Catholics are still at 22 percent of perceived sake and benefit of assimilation. 13 the population. Between 2016 and 2017, a This is known to us as the Stolen Royal Commission was held in Australia Generation.17 For many years we only saw into Institutional Sexual Abuse. The results Aboriginal People with colonial eyes. of this Royal Commission damaged the credibility of the Catholic Church by Change was happening in the 1960s when suggesting as many as seven percent of Aboriginal people were first acknowledged priests or religious leaders either committed as persons and given the right to vote. In some form of abuse, covered it up, or failed 1992, the term Terra Nullus was abolished to protect children in years past. The with the much-celebrated Mabo Case.18 In Church’s credibility and the effectiveness of 2008, the Australian Parliament offered a its arguments are so poor that in the same- National Apology to those of the Stolen sex marriage debate, it no longer had a Generation. This has led to a ten-year 14 voice. program entitled Closing the Gap, which seeks to improve the life expectancy (which Australian Aboriginals is 17 years below that of the non-indigenous population), education and employment For over 60,000 years, Australia has been outcomes for Aboriginal People.19 In the occupied by what is regarded as the oldest recent census, 600,000 people were living people and culture in the world, identified as Aboriginal or Torres Strait known as the Australian Aboriginal. They Islander20 or three percent of the are a very spiritual people believing in the population. This figure is however highly Dreaming which created all things around inaccurate given that identifying as us, and because of these beliefs, Aboriginals Aboriginal carries a certain stigma and have a special spiritual connection to land, discrimination and identifying is often seen community and time. Connection of land as a barrier to proper services and care. (often referred to as country) where it feeds, nourishes, provides and is the life-giving Euthanasia and Its Effect on Aboriginal spirit; connection to a community where People you can’t speak about the well-being of individuals without their connection to the Aboriginal Australians suffer from complex community and to the land; and finally, the and higher rates of disease than the general connection to time, for Aboriginal people population including cancer, diabetes and 15 time is all one - past, present and future. cardiovascular disease. These are often left undiagnosed because of the On arrival in 1788, the British classified intergenerational trauma and mistrust of Australia as a new colony, assuming hospitals, as they are perceived as places of

death. It’s the place where you say goodbye to your loved ones. If euthanasia legislation Any legalization on euthanasia would is approved, this would again create further require a large amount of resources to bring mistrust among Aboriginal peoples, as attitudinal change. This would need to be highlighted in the findings of the 1995 achieved by educating Aboriginal people, in introduction of legislation in the Northern order to alleviate mistrust in doctors. This Territory. During the two-year period of the money would have been better spent on legislation, there was a major decrease in preventing diseases in this vulnerable seeking medical advice and a significant population.22 increase in sexual diseases (some causing sterilization) because of the mistrust that a Australia’s Elderly needle could end a life. The following comments were made in testimony to the Australians are living much longer lives, Senate Legal and Constitutional Committee with 3.7 million Australians or 15 percent in 1996. of the population over 65 years of age.23 With this growth, has come a higher  “We are all really frightened…They proportion of elder abuse. It is expected to reckon the government is going to become more common as there is a wealth round up all the real sick people divide between generations. The World and those with V.D. and things like Health Organization defines elder abuse as that and finish them off. That’s not "a single, or repeated act, or lack of the Aboriginal way. People are appropriate action, occurring within any frightened to go to hospital now.” relationship where there is an expectation  “It was not ‘the Aboriginal way’ or of trust which causes harm or distress to an that it was contrary to Aboriginal older person". Elder abuse can be physical, Law.” psychological or emotional, sexual or 24  “We strongly believe that natural financial. Recent reports released from an death is the best way. Even if the elder abuse hotline saw 2,130 calls received person is suffering and is in pain, in 2016-17, with the most common form the person knows and the family being psychological and financial abuse. knows that the person will finish The financial abuse was mainly incurred by soon. The brothers and cousins other family members to what is known as they have the final conversation with inheritance abuse. the person who is dying and all other family members sit around FORMS OF ABUSE the person in a big circle.” Physical 13% Psycholo  “Our spirit goes away when we die gical Neglect 44% naturally but it won’t if we get the 14% needle.”  “Because of our strong preservation of life, to kill someone is an evil act Financial and therefore that evil must be 29% destroyed.”21

Euthanasia and Its Effect on Australia’s Secondly, there are emerging discussions Elderly on changing the education of health care providers. Part of this change is to provide With elder abuse on the rise, as well as the training for all interns in palliative care growing costs of health care for the aging departments, prior to the practice of their euthanasia could become a great immersion in emergency departments. This temptation. As Sydney surgeon Robert move would have doctors well trained in Claxton writes, “Medically assisted suicide understanding palliative care to help cover would be a great temptation to a cash the shortfall in regional areas. With greater strapped health department and an education in palliative care for all relevant irresistible temptation to those seeking to health professionals, and palliative care inherit money from relatives.”25 training modules in universities, a far better treatment in palliative care is highly likely.29 Current proposals have safeguards in place, but what happens when the slippery slope Finally, we can learn from Indigenous occurs and laws become more relaxed? Wisdom. Aboriginal people have taught us What about cases like that of the scientist about connection with land, community David Goodall, who at 104 was in and time. Aboriginal people speak of the reasonably good health, declared that he need of human memory and the spirits of had just had enough?26 What happens to the great, great, great grandfather in order those who are old or live with disabilities, or to look forward to the great, great, great even just perceive themselves as a burden grandchild through imagination when we on their families? Religion used to carry the are making important collective decisions. respect for life in society but will law and For Aboriginal and Torres Strait Islander medicine carry this forward?27 people, health is a holistic notion; it is considering not just the well-being of Australian Responses individuals, but also that of communities, time and country. The question must The Catholic Church in Australia is the always be asked, how do we want our future largest health care provider outside of the grandchildren to die? 30 government with over 75 hospitals (21 public and 54 private) and over 550 Conclusion residential and aged care facilities. Catholic Health Australia (CHA) which represents Catholic health care in Australia like most these facilities has responded by declaring countries has a long history of caring for the that euthanasia will not take place in poor and vulnerable. As the Australian Catholic hospitals. In its submissions to Parliament continues to debate current government, CHA wrote that its members euthanasia legislation, Catholic health care are committed to providing the best will continue to advocate for the vulnerable, possible compassionate care, and that especially its First People and the elderly. governments should divert funding into In a growing secular world, we are palliative care programs where we can challenged by Jesus’ words of fullness of life compassionately protect and dignify a and the parable of the Good Samaritan. patient’s life rather than hasten their death.28 That is the mission entrusted to us, to There may be some uncertainty on the continue to be that voice for the voiceless. future impact on our Catholic public To lose compassion is to lose what it means hospitals by taking this stand if we are to to be human. When St. Paul wrote to the continue to receive government funding. people of Rome that the life and death of each of us has its influence on others (Romans 14:7-12), he recognized the most

fundamental fact: We are relational beings 13 See http://theconversation.com/census-2016- and for us Australians, our Aboriginal shows-australias-changing-religious-profile-with- more-nones-than-catholics-79837 people show us this truth. We have much 14 See Dan Fleming, “We need better Ethical to learn from our Aboriginal people and Arguments when the Stakes are So High”, Health those in end-of-life care, for they teach us Matters, Catholic Health Australia, Autumn 2018, how to care, they teach us how to let go, p.33 15 and they teach us how to live and how to Catherine Liddle, “Why a connection to country is so important to Aboriginal communities. 3 August die. 2017 ______https://www.sbs.com.au/nitv/article/2015/10/22/why- 1 In Australia, voluntary assisted dying / suicide is connection-country-so-important-aboriginal- more commonly referred to as Euthanasia. communities. See also Cynthia Ganesharajah, 2 Census of Population and Housing: Nature and “Indigenous Health and Well-being: The Content, Australia 2016. www.abs.gov.au Importance of Country”, AIATSIS, April 2009. 3 16 History has shown us that Aboriginal People have https://www.parliament.vic.gov.au/publications/resea a complex kinship which does not allow for rch-papers/send/36-research-papers/13834- intermarriage and with over 500 nations and over voluntary-assisted-dying-bill-2017 4 280 languages spoken, an understanding of working Australia consists of 6 States and 2 Territories. The the land and strict mores that were governed by the Territories are much smaller in population with laws Elders of the community. governed by the Commonwealth of Australia. The 7 1 For more on the Stolen Generations refer to 1995, the Euthanasia Bill was overturned in 1997 when the Northern Territory was ruled not have the https://www.australianstogether.org.au/discover/austr power to make such laws. alian-history/stolen-generations. 18 5 See Professor Rod MacLeod, “More Palliative For information on Mabo refer to Care Services needed for Rural and Regional https://aiatsis.gov.au/explore/articles/mabo-case Australia”, Hammond Report, April 10, 2017 and 19 For more on Closing the Gap refer to the latest the “NSW Palliative Care the Subject of Scathing reports https://closingthegap.pmc.gov.au. Auditor-General Report”, ABC News, 17 August 20 To be recognised as Aboriginal requires 2017. verification of Aboriginal descent, self-identification, 6 John Keown, The Law and Ethics of Medicine, and community recognition to which a Certificate of Oxford University Press, Oxford, 2012, p.26 Aboriginal identity is issued. See 7 The recent death of well-known Australian scientist www.antidiscrimination.justice.nsw.gov.au 104-yearold David Goodall who travelled to 21 “Aboriginal Issues”, Senate Legal and Switzerland to end his life was quoted as saying. If Constitutional Legislation Committee Euthanasia one choses to kill oneself, then that should be fair Laws Bill 1996, March 1997 p. 39-55. Euthanasia enough. I don’t think anyone else should interfere. also raises issues of security for medical teams who See Guy Birchall, “What We Waiting For?”, The will administer when in Aboriginal Culture to th Sun 10 May 2018. deliberately kill someone can cause a payback 8 Manfred Novak, “UN Covenant on Civil and situation.“ p.55 nd Political Rights: CCPR Commentary” (NP Engel, 2 22 Julia Medew, “Euthanasia: A Question of Trust”. rev. ed, 2005) as quoted in Australian Human Rights Sydney Morning Herald November 12, 2014. Commission, Euthanasia, Human Rights and the 23 Australian Institute of Health and Welfare, “Older Law, May 2016 pages 30-34. 9 Australia at a Glance”, 21 April 2017 see Karl Quinn, “Language as a Battlefield: How we https://www.aihw.gov.au/reports/older-people/older- got from Euthanasia to Voluntary Assisted Dying”, australia-at-a-glance/contents/demographics-of-older- Sydney Morning Herald, 12 October 2017. 10 australians/australia-s-changing-age-and-gender- Julia Medew, “Euthanasia: A question of Trust”, profile Sydney Morning Herald November 12, 2014. 24 11 Refer to World Health Organisation: Thomas Malthus, “An Essay on the Principle of http://www.who.int/ageing/projects/elder_abuse/en/ Population” as quoted in Prateek Agarwa, 25 “Intelligent Economist” April 2, 2018. Julia Medew, “Euthanasia: A Question of Trust”. https://www.intelligenteconomist.com/malthusian- Sydney Morning Herald November 12, 2014. theory/ 26 Guy Birchall, “What We Waiting For?”, The Sun 12 See Robert Mickens, “Learning to Get Real by 10th May 2018. Pope Francis”, NCRonline.org, Jan 26, 2015 27 (Unpublished paper) Margaret Somerville, https://www.ncronline.org/blogs/roman- Unaddressed Issues in the Australian Euthanasia observer/learning-get-real-pope-francis. Debate, p.12

28 CHA Australia, Voluntary Assisted Dying Bill Discussion Paper. https://cha.org.au/images/CHA_Submission_Victori an_assisted_April_10_2017_FINAL.pdf 29 Professor Rod MacLeod, “More Palliative Care Services needed for Rural and Regional Australia”, Hammond Report, April 10, 2017. 30 Margaret Somerville, “The Ethical Imagination, Human Memory and Proposed Victorian Euthanasia Legislation.” Address to the Annual Dinner for the Victorian Catholic Doctors and Catholic Lawyers, 17 June 2017. (Unpublished) See also National Aboriginal Community Controlled Health Organisation “Aboriginal health means not just the physical wellbeing of the individual but refers to the social, emotional and cultural wellbeing of the whole community in which each individual is able to achieve their full potential as a human being thereby bringing about the total wellbeing of their community.” http://www.naccho.org.au

People or Profit: A Comparison of Health Care in Brazil and the United States

Fr. Alexandre A. Martins, MI, Ph.D. Assistant Professor, Department of Theology Marquette University Milwaukee [email protected]

This essay offers a reflection about the (Sistema Único de Saúde), a public health increasing influence of profit in Catholic system of universal coverage grounded on health care. Based on Jesus’ teaching that three pillars: universality, integrality and shows that the need of the wounded person equity. These principles are embodied in a on the street comes first (Luke 10: 25-37), public system of democratic participation Catholic health care ministry has the from primary to tertiary care (see Leis challenge to create services where people, not Orgânicas de Saúde).2 However, this is not profit, come first. the only health system operating in Brazil. Lobbying by private interest groups made To illustrate this, two cases deserve our sure the 1988 Constitution also permits attention. The first is from Brazil with the private initiatives to offer health care as conflict between its public and private health “complementary services” to the public care system. The second is from the United system. This created opportunities for the States with a recent scandal involving a heart establishment of private health systems, surgeon performing unnecessary surgeries. which are hospital-based and focused on These two cases will serve as narratives tertiary care (unlike the public system that is representing the challenges of the health care community-based, focusing on primary care). market and public services, and how Catholic health care institutions are challenged to be From the beginning, tensions and conflicts financially sustainable while serving the poor. have plagued Brazilian health care with the Briefly, I will describe the cases, raise some public and the private systems going in issues, and conclude with some questions for opposite directions. While the SUS targets Catholic health care in these contexts. population health, the private system targets the well-to-do sick as consumers. Currently, Case #1. The Brazilian Constitution of 1988 75% of the Brazilian population uses public determined that “health is a right of all services and 25% are in private services (the people and a duty of the state, guaranteed by latter is growing). social and economic policies that reduce the risk of disease and other adversities and by The present federal administration grabbed universal and equal access to actions and power through a parliamentary coup and services.”1 This allowed the creation of the appointed as ministry of health a Unified Health System, known as SUS representative who was elected with his

campaign sponsored by private health care private health care. In the U.S., most health companies. Since the beginning of this care is privately held and operates according administration, the commitment to the to principles of the free market. Even the private health sector has been clear. The services provided and/or supported by public federal government cannot simply end the funds function inside this market. One can SUS because it fulfills a constitutional see some benefits in this way of structuring, mandate. So, the administration decided to such as availability of high tech medicine, weaken and dismantle the public system tertiary care, and quick access to medical through executive actions and new policies. services. The U.S. is the only developed This had the effect of pushing some people country that does not offer universal health into private services and insurance, creating a coverage for its citizens, so that these large opportunity to the private sector. The advantages are often a privilege for those who most significant action against the SUS was have insurance and can afford them, just as in the approval of legislation which froze the Brazil’s private system. The American public investment in the SUS for 20 years. At approach has influenced Brazil. Let me the same time, the administration ended illustrate this point with a case reported by regulations meant to control the private the Milwaukee Journal Sentinel on February system, especially insurance policies. This 16, 2018. The article shows a scandal has facilitated the activities of insurance involving a heart surgeon and the Medical companies and private hospitals, a sector that College of Wisconsin (MCW).3 has been growing in the country, even amid an economic crisis. A surgeon hired by the MCW and Froedtert Hospital was accused of doing unnecessary These actions against the Brazilian public heart surgeries. When colleagues of this health system have shifted health care from a surgeon alerted the dean of the medical right to a privilege. Good, high-quality health school about this misconduct, the dean services have become a luxury for those who acknowledged that this was not an ideal can pay, while the SUS is becoming a situation, but that they had to take into synonymy for precarious services for those consideration the revenue that this heart who cannot. This also has changed the health surgeon was bringing to the hospital and his priority of the country from population team. So, the MCW did not take any action health to services targeting sick people; from against the surgeon and kept him working for a community-based system to a hospital- a few years, until allowing his contract to centered health care. expire. It is not clear whether this contract was not renewed by the MCW, or if it was This shift from public to private health the physician’s own decision to leave. systems abandons the promotion of well- being and a healthy population. It also This story became public after a group of reduces community participation. Without physicians brought a lawsuit against the funding, the public sector of SUS, which is a MCW and Froedtert Hospital (that function participatory system, enters a downward together as partners). The article presented spiral. some documents provided for the lawsuit including emails showing that leaders of the Case #2. Considering this health care shift in MCW knew the practice of this surgeon and Brazil, I think it is interesting to look at the did not act because of the enhanced revenue. U.S. system, a country that has know-how in Patient well-being did not seem to play a

major role; indeed, some cases showed no market, can lead CEOs to a hospital-based symptoms supporting the necessity of a approach to health care which neglects surgery. Another physician said that the community involvement and the focus on patient’s symptoms suggested a more population health. This has a significant conservative treatment including physical impact on the mission of Catholic health therapy and outpatient services. ministry and creates failures in the Unfortunately, this unnecessary surgical commitment to the poor and vulnerable. procedure resulted in complications that Referring to the use of the word ‘ministry’ in significantly affected the patient’s quality of Catholic health care and considering this life. This appears to be a case in which context in the health market one ethicist said, revenue displaced patient care. It could even “Our common use of the ‘ministry’ in be described as a kind of institutional reference to Catholic health care is meant to violence. convey that, while health care must be run in a business-like way, it is first and foremost a Overemphasis on revenue takes advantage of work of the Church that is rooted in the patients who have limited knowledge and health mission of Jesus.” This leads us to ask who trust their physicians to act on their whether the influence of the profit-driven behalf. Health professionals are vulnerable logic of the market is forcing the business-like because their judgment can be influenced by way to overcome the Catholic health care system protocols and culture. For example, commitment to healing mission of Jesus, the U.S. doctors are in a culture that tends to identity of the mission, and to what Benedict over-test patients for fear of litigation. XVI calls “the logic of gift.”4 Unnecessary procedures and tests makes medical services more expensive, increasing Saint Camillus Health (São Camilo Saúde) is financial and emotional dramas for patients the largest Catholic health care organization and families. in Brazil with 51 hospitals plus numerous clinics and primary care centers. Its Letter of Excessive focus on revenue can make Principles says, “The prophetic mission that patients into mere consumers. This logic is we received from the Gospel and Saint totally opposed to human rights logic, in Camillus is to follow Jesus in the Samaritan’s which the dignity of every person is intrinsic care for the sick, ‘I was sick and you visited and inviolable. me’ (Matt. 25:36), and to witness Christ’s love for the sick in the world.” And quoting In this profit-driven logic, everybody is Pope Francis, this letter adds: “Embodying a vulnerable, but the poor are the first and creative fidelity to our Charism, we go to foremost to suffer as victims of structural encounter of those who are in ‘the violence. geographic and existential peripheries of the human life.’”5 The same spirit can be seen in In both Brazil and the United States, Ascension Health, the largest Catholic health Catholic health care has a significant care organization in the U.S.: “Rooted in the presence, and Catholic institutions are an loving ministry of Jesus as healer, we commit important part of the “safety net” for ourselves to serving all persons with special marginalized populations, especially the attention to those who are poor and poor. Overemphasis on financial vulnerable.”6 sustainability, increasing revenue, decreasing expenditures, and being competitive in the

Although the mission of Catholic health systems is the embodiment of Jesus’ ministry 1 Presidência da República, Constituição da to the sick and his special attention to the República Federativa do Brasil de 1988. http://www2.planalto.gov.br/acervo/constituicao- poor and the vulnerable, Catholic institutions federal must deal with the health market, public– 2 private partnerships, the instability of health Legislação Básica do SUS, http://bvsms.saude.gov.br/component/content/articl legislation, and the dominant perspective of e?layout=edit&id=155

health care delivery. Consequently, the 3 promotion of social well-being and the fight Mark Johnson and Bruce Vielmetti, “Medical College of Wisconsin knew doctor was accused of against health inequalities are hardly performing unnecessary surgery,” in Milwaukee addressed. Perhaps Catholic health Journal Sentinel (February 16, 2018), institutions fail in addressing the profit-driven https://www.jsonline.com/story/news/investigations/2 system and, operating inside it, become 018/02/16/medical-college-wisconsin-allowed- doctor-accused-performing-unnecessary-surgery- complicit with the lack of a people-centered treat-patients-3-yea/342295002/ perspective. This situation becomes even 4 more complex when one witnesses the Charles E. Bouchard, O.P., S.T.D., “The Meaning of Ministry in Health Care” in Incarnate Grace: presence of for-profit Catholic health Perspectives on the Ministry of Catholic Health institutions. This exists in the U.S. and has a Care (St. Louis: Catholic Health Association of the tendency to expand. Can a for-profit Catholic United States, 2017), 201. health center care for the poor? Or “will 5 São Camilo Saúde, Cartas de Princípios Camilianos, Catholic identity become just a matter of http://www.saocamilosaude.com

compliance to the Ethical and Religious 6 7 Ascension, Mission, Vision, and Values, Directives?” https://ascension.org/our-mission/mission-vision- values Serving the poor is a complex endeavor, 7 Bouchard, op. cit., 204.

especially when this service must be done 8 from Jesus’ loving ministry for the destitute Pope Francis, «Church as a Mother Not a NGO» in Vatican Radio (06/17/2014). sick. As Pope Francis said: The Catholic http://en.radiovaticana.va/news/2014/06/17/pope_fr 8 Church is not a “well-organized NGO.” All ancis_church_a_mother_not_a_ngo/1101850 services provided by Catholics and their organizations must be meaningful, possessing a meaning that is rooted in Jesus and a message addressed to the poor, who are privileged recipients of the good-news (Luke 4:16-18).

I conclude with what I heard from an administrator of a Catholic hospital. He told me that he was in an executive board meeting when a sister from the sponsoring congregation said: “We must help the poor. This is our priority, and we have to figure out how we can do it better.”

In the May 15, 2018 issue of Catholic Health the use of the word “system” gives too much World, CHA’s Julie Minda published a piece credit to the disparate rules and procedures detailing a recent initiative on end-of-life among the states. With my interest piqued, I education for clergy members – “Clergy gain began to research for more information. insights in end-of-life choices.” Fr. Charlie Bouchard and I spent a day with priests, Last year, The New Yorker contained a piece deacons, and the bishop of Victoria, Texas outlining a few cases and the need for more reviewing the church’s teaching on end-of-life oversight. The publication revealed that, ethical issues to prepare them to advise their “according to an auditor for the guardianship parishioners about advance care planning. fraud program in Palm Beach County…a The following week, I spent an evening with a million and a half adults are under the care of group of Stephen’s Ministers, parishioners guardians, either family or professionals, who trained to accompany others in difficult control some two hundred and seventy-three times, overviewing the same topic. What billion dollars in assets.”1 This is a very large became clear at these events was that both group of people dependent upon others for the laity and the ordained are yearning for decisions regarding their health, finances, and answers and advice. living situation.

One topic each group raised regarded the According to the Missouri Developmental role of a durable or medical power of Disability Resource Center, when an attorney (POA). As ethicists reading this individual is deemed to lack capacity and is publication, you are all very familiar with this assigned a guardian, he/she “may lose many subject. However, the public continues to rights that are often taken for granted such as question the need for and the role of a POA. the right to vote, obtain a driver’s license, One member of the Stephen’s Ministers consent or object to medical care, or enter stated the difficulty in naming one member into contracts like marriage or home of their family as the decision maker for fear ownership. Individuals with a guardian may of offending the others. Another individual not get to decide where they live, with whom assumed that should no family member be they live, where they go in the community or available, the hospital staff will make the how their money is spent.”2 In an article for proper medical decisions. These are not Forbes, Emily Gurnon sums up this extreme isolated questions; they reaffirm CHA’s intervention: “With as little as a single initiative to educate more of the faithful and document – and in some cases, not even a church leaders on our tradition’s end-of-life court hearing – older adults can see their teachings. most basic rights stripped away.”3 With the potential elimination of such fundamental With these two events, and the planning for rights, one would hope that the system of more in the near future, my eye has been becoming and assigning a guardian was well keen on topics related to surrogate decision regulated and overseen. Unfortunately, that is making. So, I was immediately alert when not the situation. one Sunday John Oliver on his HBO series Last Week Tonight raised the topic of States do not need to keep records on the guardianship in the United States. Using the outcomes of court-appointed guardians. In story of a couple in Nevada, Mr. Oliver 2010, a Government Accountability report began to outline a series of abuses within the said, “’We could not locate a single Web site, court-appointed guardianship system. In fact, federal agency, state or local entity, or any

other organization that compiles POA, whose family members are never comprehensive information on the issue.’”4 present (yet known), and whose decision Pamela Teaser, of the Center for making is waning? I am sure this a very Gerontology at Virginia Tech, summed up common occurrence for our readership. the situation as “‘a morass, a total mess. It is When a care team meeting is called to decide unconscionable that we don’t have any data, next steps, often someone raises the idea of when you think about the vast power given to seeking a guardian. Their intentions are a guardian. It is one of society’s most drastic good; they know a person is needed to assist interventions.’ ”5 In 2014, a survey on state in decision making. I wonder now how much guardianship laws found that “40 percent of about the guardianship program these the 1,000 respondents said that criminal healthcare workers truly understand. background checks were not required of non- professional guardians of an estate” and that Within our church tradition we have a view “sixty percent of the court respondents said of the person that extends beyond their they did not require a credit or financial decisional capabilities. Unfortunately, society background check on a prospective equates one’s value with one’s performative guardian.”6 As Teaser tells HuffPost, “‘In function. Court appointed guardianship relies most states around the country, it is easier to upon this latter anthropology. It sometimes qualify as a guardian than it is to become a excessively strips away one’s rights because hairdresser…’ ”7 they cannot make certain decisions. Yet, we are called as Catholics to respect one’s What is the effect of this lack of oversight? dignity, not just one’s decision-making ability. The GAO, in a different 2010 report, “found This demands that we keep the person in hundreds of allegations of physical abuse, proper relationship with the world and with neglect and financial exploitation by those actions that affect his/her own life. guardians in 45 states and the District of Columbia between 1990 and 2010.”8 The Human dignity also underlines Part Three of financial exploitation totaled nearly $5.4 the Ethical and Religious Directives. It is in million in assets stolen by the very people this section that the bishops recognize the entrusted to manage it.9 If the patient, or their obligation that we have towards the family uncovers the abuse or exploitation, the vulnerable in our midst. Most importantly we system makes it almost impossible to exit. A must ensure “mutual respect, trust, honesty, patient is unable to testify in court, or to hire and appropriate confidentiality.” The an attorney. As Bredna Uekert, principal directives extend from these values to outline court research consultant with the National the right of a patient to “identify in advance a Center for State Courts, tells Forbes “‘Go representative to make health care decisions” ahead and see what you can do, because you and “their rights…to make an advance have been deemed incapacitated, so directive…”11 These directives lead me to everything you say or do is meaningless.’ ”10 provide some recommendations.

Clearly this is a tragic and unjust situation. It The first is simple and many are trying to ought to raise our awareness when we already increase the numbers – encourage encounter a patient who is on the course patients to assign a trusted POA. Along with towards incapacitation. How many times the official paperwork, the person ought to have you been called to a consult in which have many conversations about their values, the individual does not have an assigned fears, and preferences to ensure that any

future decisions align with their wishes. The of abuse to proper authorities…” Developing ERDs describes a good surrogate as “those awareness about and procedures for when a who are in a position to know best the co-worker suspects abuse by a guardian is a patient’s wishes.” This is the surest way to starting point for the protection of these prevent the need for a court-appointed potential victims. guardian.

A second avenue is to know the alternatives https://www.forbes.com/sites/nextavenue/201 for a guardian. Just because someone has 6/05/23/guardianship-in-the-u-s-protection-or- been declared to lack capacity in medical exploitation/#7acbdb4e3b49 decisions, does not necessarily mean that https://www.newyorker.com/magazine/2017/1 they lack capacity for all decisions. The 0/09/how-the-elderly-lose-their-rights Missouri Developmental Disability Resource https://www.huffingtonpost.com/entry/court- Center outlines a few such paths: appointed-guardian-system-failing- elderly_us_59d3f70be4b06226e3f44d4e  General Supports – natural, unpaid, and community resources and may include https://health.mo.gov/shcn/CSHCN/docs/Gu family, friends, and advocacy organizations. ardianshipInfoPack.pdf ______1  Money Management Supports – help “How the Elderly Lose Their Rights,” The New Yorker, 10.9.2017 manage financial obligations and avoid 2 A New Way to Support Families, Missouri exploitation. These supports include such Developmental Disability Resource Center things as joint bank accounts and trusts. 3 “Guardianship in the US: Protection or Exploitation,” Forbes, 05.23.2016 4  “How the Elderly Lose Their Rights,” The New Personal Safety Supports – are useful for Yorker, 10.9.2017 individuals at risk for being abused/neglected 5 “How the Elderly Lose Their Rights,” The New by an intimate partner, spouse, family Yorker, 10.9.2017 member, personal assistant or caregiver.12 6 “Guardianship in the US: Protection or Exploitation,” Forbes, 05.23.2016 7 “Court Appointed Guardian System Failing Elderly,” The third recommendation is to be alert HuffingtonPost, 10.10.17 should a court-appointed guardian be 8 “Guardianship in the US: Protection or assigned to one of your patients. Knowing the Exploitation,” Forbes, 05.23.2016 power a guardian has over every facet of the 9 “Guardianship in the US: Protection or person’s life, we should keep an eye out for Exploitation,” Forbes, 05.23.2016 10 “Guardianship in the US: Protection or potential abuse happening outside the Exploitation,” Forbes, 05.23.2016 hospital. Be wary should the guardian 11 USCCB, Ethical and Religious Directives for Health suddenly inform you of an address change; Care Services: 5th Edition, #24, 25. they may have just sold the patient’s house. 12 A New Way to Support Families, Missouri No family or friends visiting the patient? This Developmental Disability Resource Center

could be a sign of exploitation and isolation. We have a duty to protect the vulnerable in N.H. our midst beyond curing their illness. This duty is outlined in Directive 35 of the ERDs: “Health care professionals should be educated to recognize the symptoms of abuse and violence and are obliged to report cases Copyright © 2018 CHA. Permission granted to CHA‐member organizations and Saint Louis University to copy and distribute for educational purposes. Health Care Ethics USA | Summer 2018 31

Health Care Reform Should Not Be share more of it with those who are less Compassionate fortunate. This view makes allocation of Justice comes first, but it’s a hard sell health care an act of charity – a handout from the haves to the have nots. This might be Health care reform in the U.S. is like a appropriate if the donor were a private swinging bridge high above a wild river. It is employer who chooses to give a large, shaky and the stakes are high, but at least it’s unearned bonus to employees at Christmas, still there. Things are calm for the moment. but it is not the way politicians should think. It is hard to say whether there will be further Charity should infuse our lives as Christians, attempts to weaken the Affordable Care Act and ultimately it is union with God. But we’re (ACA) before the fall mid-terms. This is a not there yet. Our very imperfect world, and good time to step back and reflect, especially its even less perfect political system, must be in light of what we have learned about ruled by justice and not charity. attitudes toward health care financing since the ACA became law. Moral theologian Stephen Pope makes a similar point in his review of Paul Bloom’s Americans remain deeply divided about book Against Empathy: The Case for health care reform. Across all groups except Rational Compassion.2 Compassion and young millennials, support for it is only empathy are not the same, but their similarity slightly above half of those polled. Among as affective responses to evil warrant their some groups (e.g., older whites who identify comparison here. Pope recognizes empathy as Republican) only about 15% support it. In as an emotion and agrees with Bloom that December of 2017 a Kaiser Health News emotion has weaknesses as a basis for survey tried to find out, “Why do people hate morality. “Empathy is a human capacity that Obamacare, anyway?” They summarized the can serve good or evil, and that can be responses in four categories: ideology (too exercised wisely or foolishly, so it has to be expensive, too much government properly developed, trained and ordered by involvement); lack of knowledge about what reason.” Its proper moral significance, he the bill actually does; confusing the law with says, is only apparent if you put it “into the the health care system generally; and the fact context of an overarching commitment to that the ACA actually made things worse for justice, the virtue that requires us to consider some people.1 the goods and harms done to individuals in light of the common good.” He does not At first many of these objections puzzled me. deny the importance of empathy or other Recently, I have come to understand them feelings, but he denies their “ethical better. One problem is the language we use primacy.” to frame the case for reform. Many times during the debates I heard critics denounce Justice is the will that “each receives his or reform proposals as cruel or lacking in her due.” This is a hard sell in part because compassion. I don’t think that kind of it depends on the idea of rights. My “due” is language is appropriate to the political what I am owed. But we run into problems process. To say that a health care bill should as soon as we introduce rights language be compassionate implies that there are some because “right” is a highly analogous term. It people who own or control health care (the means different things to different people. In government, health care providers, insurance the Catholic tradition, a right is a moral companies?) and that they should kindly power, that is, the ability to lay claim on

something. A right may be positive or deserving and underserving. Some even felt negative. I can lay claim to something, or to rights were undermining work and be free of something but rights are only responsibility. Their views were all meaningful if there is a corresponding articulations of a classic theory of rights which obligation. This works in a cohesive, tightly- requires more than a manifesto. woven community like a family and sometimes in much larger entities where The most interesting thing about the there is a shared value and story about what is interviews was the careful distinction good. This may have been true in the U.S. Gawande’s interlocuters drew between in the 1940s and 50s. However, starting in Medicaid and Medicare. Most of them the 1960s, our relatively cohesive culture disliked the right that undergirds Medicaid, began to unravel, individualism took on a because it seemed to reward eligible people new prominence, and the idea of a manifesto who they felt were underserving, people who right began to arise.3 A right became a didn’t pay in and who didn’t work. This is a “moral trump card.” People demanded popular misconception since many Medicaid power, equality, solidarity, health care, recipients are employed but don’t have health, and life itself, but it was not clear who adequate medical coverage. had the corresponding obligation. This led many people, especially in the United States, Medicare, however, was an entirely different to see a right as code language for story. Almost everyone supported it because entitlement, or giving lots of free stuff to they had all paid into it. “To them,” people who presumably don’t deserve it. Gawande said, “Medicare was less about a universal right than about a universal Atul Gawande, the well-known physician- agreement on how much we give and how author, recently tried to understand what the much we get.” They had an intuitive sense problem was with the right to health care that rights were more complicated than a coverage that was part of the Affordable Care claim. They understood that rights are Act.4 He went back to Athens, Ohio, the rooted in a complex web of relationships that working-class town where he grew up and require both give and take. where the recession hit hard and lack of health care coverage is still a major problem So, part of the problem is that we need to (now exacerbated by the opiate addiction acknowledge legitimate anger about crisis). perceived injustice. It is pretty hard to see the big picture of health economics if you’re Gawande asked people what they thought barely making it yourself and feel like you’re about the ACA and especially about a “right” also paying for someone else. We need to do to health care. It is clear from the answers he a better job of explaining what rights and got that many of his friends were suspicious justice mean or find other language of rights language because it appeared unjust. altogether. “One person’s right to health care becomes another person’s burden to pay for it,” one Another issue is to be clear about self- friend said. “Everybody has a right to access interest. If a right to health care is not a big health care,” he continued, “but they should giveaway, then what’s in it for me? ACA be contributing to the cost.” Another proponents did an inadequate job of childhood friend was bothered by the fact presenting the case for better coverage. Self- that rights make no distinction between the interest plays a role because all of us are

vulnerable and rights are one way that we absence of obligation. We regard anything limit or at least account for vulnerability. that involves a mandate with suspicion. Yet Even if I am healthy right now, I could get there are many things that are essential to our sick tomorrow. More to the point, my health lives which would be impossible without is connected to the health of others, a fact broad public support. Requiring me to buy a that becomes painfully obvious in the case of certain minimum level of insurance is not an epidemic. We haven’t even had a bad flu like making me buy a lawnmower or a certain season in the last few years, so we tend to model car. Health care is a not a forget about this possibility Even if I don’t commodity. It’s a public service that, like the worry about catching the flu, do I really want fire department or the police department to live in a society full of sick people? involves complex logistics, expertise and sophisticated training. Maintaining them Self-interest has an economic aspect as well. requires a stream of revenue and broad There are plenty of academic studies to participation by citizens. One of Dr. prove it, but even an amateur can understand Gawande’s friends, Mark, came to this that lack of primary care, especially for realization after he had a serious heart attack. chronic illnesses, is going to increase health He said he thanked his whole medical team care costs down the line. Providing not just for taking care of him, but for “when inexpensive drugs and regular checkups for I was smoking drinking and eating chicken diabetes and hypertension lowers health care wings. They were all here working and costs for heart attack, stroke, kidney disease studying and I appreciated it.” They were and other complications that inevitably occur getting ready for Mark, Gawande said, if these manageable diseases are left “regardless of who he would turn out to be – untreated. Society (not just government) will rich or poor, spendthrift or provident, wise pay the long-term costs through charity care, or foolish.” welfare or higher insurance premiums. It is the same principle that sends us to the It is certainly possible to argue that we don’t mechanic for regular oil changes before the want health care to be a government handout engine blows up. or even that we don’t want the government to control health care. But you can’t make that The insurance mandate was a feature of the argument and also say that citizens have no Affordable Care Act that required everyone responsibility for their own health care or to to buy a certain level of insurance coverage. It contribute to a health care system they will was the obligation that corresponds to the eventually need. right to health care. Yet opponents of the mandate, like Senate Majority Leader Mitch No one wants to live in a world without McConnell (R-KY) see it as incompatible compassion, but a world without justice is with self-interest because it infringes on even worse. Let’s work toward justice first, individual liberty. He says citizens should not even if the first step is enlightened self- be forced to buy something that they “don’t interest. Let’s also work harder to put the want, don’t need and can’t afford.” Citizens Gospel mandate for justice and the common should be free to buy any kind of insurance, good into language that is clear and or no insurance at all. persuasive.

This is appealing to many Americans who C.B. like to think of freedom negatively, as the

1Julie Rovner, “Why do People Hate Obamacare, Anyway?” Kaiser Health News (December 13, 2017). Nate Silver’s website FiveThirtyEight did an overview polling on the same questions in 2014 and 2015 and came to similar conclusions. They said the top five reasons were a) personal costs/unaffordable; b) infringes on rights/unconstitutional; c) not proper role of government; d) constrains choice and e) is unfair. See Dan Hopkins, “What Americans Don’t Like About Obamacare,” FiveThirtyEight (June 27, 2017). 2 HarperCollins, 2017. Pope’s review is found in Commonweal (June 16, 2017) 33-34m “I Don’t Feel Your Pain.” 3 See Andrew Latham and John Bowlin, “Is the Common Good Obsolete?” Commonweal (November 17, 2016). Latham maintains that the lack of a common idea of human fulfillment has made the common good an impossible goal. 4 “Is Health Care a Right?” The New Yorker (October 2, 2017): 48-55.

Elliot calls a “third party injury.” Elliot notes Literature Review that assisted suicide violates the central tenet Christian Bioethics 24, no. 1 (April 2018): of Western democracies to uphold the equal “Physician-Assisted Suicide and Voluntary moral status and worth of all human beings Euthanasia: Dying in a Post-Christian Age” before the law.

Elliot – “Institutionalizing Inequality: The Next, Elliot notes that the secular argument Physical Criterion of Assisted Suicide” he has made against assisted suicide is not only compatible with Christianity but also David Elliot makes an important contribution deepened by it. Turning to Aquinas, he to the assisted suicide debate in his article, shows that the degradation of persons “Institutionalizing Inequality: The Physical through assisted suicide violates a theology of Criterion of Assisted Suicide.” In Anglo- the imago dei where all human beings have American legislation, the two measures inherent dignity. Theology deepens the generally used to restrict eligibility for assisted understanding of who or what has been suicide are autonomy and physical criteria. wronged in assisted suicide and shows that it While most assisted suicide arguments focus injures our relationship with God. on autonomy, Elliot turns to the physical criterion to argue that it violates the equality Lastly, Elliot examines the viewpoint of those of respect for all people and degrades a large degraded by assisted suicide. Assisted suicide class of people by determining that certain introduces a shift in decision-making for the characteristics make life not worth living. The group of people whose lives are deemed central problem, Elliot argues, is that the worthy of suicide, namely this group of criterion degrades “tens of thousands of very people now has to choose not to die. With sick and dying people” by judging their lives an aging population and the financial costs of as not worthwhile. This creates a category of caring for the elderly, assisted suicide shifts people for whom their physical conditions the burden of proof towards reasons for warrant assistance in death and a category of staying alive. Moreover, from a disability people for whom their lives are considered rights perspective, the physical criterion of valuable and worth preserving despite assisted suicide implicates that certain physical conditions; the latter being offered disabilities may make life not worth living. suicide prevention instead of assistance in Elliot asserts that the physical criterion of death. assisted suicide not only violates the equal moral status and respect that is owed to all in One of the central problems with assisted a democracy, but it also inflicts a degrading suicide, Elliot notes, is that the state becomes evaluative judgment on all people for whom the arbiter of moral status. In other words, the physical criterion is applicable. Elliot the state takes an extreme form of concludes by suggesting that in addition to paternalism when it makes judgments about the recovery of Christian practices and what type of life is no longer worth living. resources to address the problems of This results in a societally-reinforced and medicalized dying, we need to urgently institutionally-rooted degradation of certain devote our efforts to developing a theological groups of people. The equal moral status of a virtue of hope that is rooted in the whole class of people is violated; this Resurrection.

Eberl – “I Am My Brother’s Keeper: assist the caretakers (e.g., paid time off from Communitarian Obligations to the Dying employers). Drawing from Callahan, Eberl Person” notes that PAS requires two individuals to make this act possible and a complicit society In his article, “I am my brother’s keeper: to make the act acceptable. Perhaps most Communitarian obligations to the dying importantly, PAS “obviates communal person,” Jason T. Eberl purposefully obligations to suffering members,” and Eberl sidesteps the debate on whether PAS ought then turns his focus to illuminating these to be legal and instead focuses on communal communal obligations towards the dying duties towards the dying. Eberl claims that members of society. ethical indictments of PAS often end with arguments against allowing an individual to A common argument in support of PAS is end his life, however, the positive communal that beneficence demands we alleviate the duties to ameliorate the suffering of the dying suffering of the dying, thus rendering PAS a are left unexamined. Eberl hopes that his compassionate discharge of duty towards the argument will bolster the need for investment dying. However, Eberl contends that closely- in palliative care amidst growing legalization delineated social communities have the and acceptance of PAS. positive obligation to alleviate the suffering of the dying. Concerning suffering, Eberl Before examining the communal duties discusses some of the literature on the towards the dying, Eberl briefly recounts the instrumental value of suffering: redemptive libertarian and communitarian arguments suffering, suffering as a source of repentance, regarding PAS. Perhaps the most prominent and suffering as witness of moral character. argument in support of PAS is the libertarian Additionally, suffering can be a source of idea that the voluntary, reasoned choices of solidarity among patients and their caregivers. autonomous individuals ought to be Eberl ends this section reiterating the absolutely respected. In contrast, a importance of the wider communities communitarian argument against PAS holds supporting closely-delineated social that human beings are social beings who have communities since “co-suffering” in solidarity duties and responsibilities towards their with dying patients necessitates the support of community. On this account, suicide is not the whole community, even if only a few are merely a private act but one that has directly caring for the dying individual. implications for the community. Following Aristotle and Aquinas, Eberl looks to the After briefly recounting the Roman Catholic polis (i.e., the state) to draft legislation to arguments against PAS, Eberl ends his article prohibit PAS, since it is to this community by exploring some practical suggestions for that an individual has the negative obligation better communal care of dying. Given the to not commit suicide. Importantly, there is a sparse number of palliative care services corresponding positive obligation for closely- nationwide, Eberl draws on some recent delineated social communities to assist work by M. Therese Lysaught and Lydia individuals to meet this negative obligation, Dugdale to sketch ways to “tame death” and since those close to an individual are best incorporate the ars moriendi. Eberl suited to care for him. As those caring for an concludes by highlighting a few programs that individual also need assistance, then the illustrate the communal care wider social communities must

for the dying, including a program at Angola that ought to support dying patients. Taken State Penitentiary in Louisiana where inmates together, these two articles from the spring serve as hospice volunteers for those who are issue of Christian Bioethics bolster the dying within the prison while serving a life Christian critique of PAS in creative ways and sentence. These practical guidelines and should appeal to a broad audience. programs provide a concrete alternative to PAS, but there are potentially many more creative ways for the community to support HCEUSA Literature Review by Jacob the dying that need actualizing. Harrison, PhD(c) and Christopher Ostertag, M.A. Synthesis *Jacob is a Ph.D. candidate and Christopher Both Elliot and Eberl make important is a Ph.D. student in the Health Care Ethics contributions to the debate on PAS, albeit in program at Saint Louis University. different ways. Elliot’s argument incorporates the disability rights perspective to show how current regulations of, and arguments in favor of, PAS actually denigrate a class of people by holding their lives to be unworthy of living. In Elliot’s view, the arguments and legislature in favor of PAS fall flat without the “physical criterion” he critiques in his article. In the end, Elliot turns to Christianity and the theological virtue of hope rooted in the Resurrection to alleviate the suffering of the dying, who are so often made to believe that PAS is their best option.

In many ways, Eberl’s article begins where Elliot’s ends. Eberl purposefully sidesteps the entire debate on whether PAS should be available and instead emphasizes the positive obligations that social communities have to alleviate the suffering of the dying. In taking this approach, Eberl appeals to those on both sides of the PAS discussion and calls for more investment in palliative care programs. Like Elliot, Eberl draws from the Christian tradition and points to recent work on the ars moriendi to ultimately reframe the current debates around PAS. Another way these two articles complement one another is that Elliot focuses on the dying patients who, because of current regulations, are living lives deemed

unworthy of living by the state, whereas Eberl turns his attention to the social communities

Health Care Ethics USA © 2018 is published quarterly by the Catholic Health Association of the United States (CHA) and the Albert Gnaegi Center for Health Care Ethics (CHCE) at Saint Louis University. Subscriptions to Health Care Ethics USA are free to members of CHA and the Catholic health ministry.

Executive editor: Fr. Charles Bouchard, OP, S.T.D., CHA senior director, theology and ethics Associate editors: Tobias Winright, Ph.D., Hubert Mäder Chair of Health Care Ethics, Albert Gnaegi Center for Health Care and Ethics, Saint Louis University, and Nathaniel Hibner, CHA director, ethics. CHA’s Theologian/Ethicist Committee serves as advisory committee to the editorial board. Managing editor: Ellen B. Schlanker, CHA director, communications. Layout design: Jennifer M. Wiegert, CHA communications specialist. Of Note and Literature Review Contributors: Amy N. Sanders, assistant director, Center for Health Law Studies, Saint Louis University School of Law, Jacob Harrison, Ph.D. student, and Christopher Ostertag, Ph.D. student, Albert Gnaegi Center for Health Care Ethics, Saint Louis University, and Lori Ashmore-Ruppel, mission program and research associate, Catholic Health Association.