Health Care Ethics USA Christian Anthropology and Health Care

FALL 2018 volume 26, number 4

Health Care Ethics USA

A quarterly resource for the Catholic Health Ministry USA

QUARTERLY

FEATURE | 1 FROM THE FIELD | 20

Christian Anthropology Ethics Recruitment and and Health Care Role Awareness: What We’re Hearing Darlene Fozard Weaver, Ph.D.

Jenna Speckart, D.Be.

FEATURE | 7

ETHICAL CURRENTS | 23

Opportunistic Risk Reduction Salpingectomy Medicaid Makes It Possible

and Ovarian Cancer Fr. Charles Bouchard, O.P., S.T.D.

G. Kevin Donovan, MD, MA, Kevin FitzGerald, SJ, Ph.D., Ph.D., and Daniel Sulmasy, MD, Ph.D.

RESPONDEO | 28

FROM THE FIELD | 14 Theology and Ethics: Reflections on the Revisions Ethics, Public Policy to Part Six of the ERDs and Care of Individuals with John A. Gallagher, Ph.D. Intellectual Disability

Peter Smith, MD, MA LEGAL LENS | 35

Copyright © 2018 CHA. 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. Permission granted to CHA-member organizations and Saint Louis Universiry to copy and distribute for educational purposed. ISSN 2372-7683

FALL 2018 FEATURE ARTICLE chausa.org/hceusa Christian Anthropology

Christian Anthropology and Health Care

Darlene Fozard Weaver, Ph.D. Human persons are not only creatures but sinners. Sin designates the disruption of proper An inventory of contributions of the Catholic relationship with God and others.4 Sin disrupts moral tradition may not include theological our relationships because it corrupts the 1 anthropology on that list, but it should. agential capacities by which we perceive, think, Reflection on human persons through a affectively respond to stimuli, and choose. Sin theological lens yields a number of normative therefore undermines our ability to perceive insights. In particular, it can nuance Catholic and respect others’ moral worth and our understanding of human dignity—a willingness to make choices that affect others. foundational principle for health care ethics— Importantly, these consequences of sin cannot in a way that yields fruit for health care and be corrected simply by stipulating that others health care ethics. have an equal and irreducible moral status. Sin may even operate in the ways we defend others’ THEOLOGICAL ANTHROPOLOGY moral worth, influencing the way we describe what it means to be human, what a good Understood theologically, human persons are human life looks like, and how we should creatures, sinners, and adopted children and respond to moral failures. siblings in the Holy Spirit. As embodied creatures, human beings share physical needs Grace is a name for the gift of being drawn into (like a need for water) and experiences (like dynamics of right relationship with God, self, growth, anger, illness, and play).2 Human and others. Put theologically, grace is a share in persons are composite creatures, having bodies God’s own life. Our capacities as moral agents but also the stuff of transcendence and agency, need to be healed from the corrupting influence like consciousness, freedom, and memory. of sin. Grace allows us to recognize ourselves Moreover, we are formed within social and others in light of God, who recognizes our networks—many of which we do not choose— creatureliness as good, who loves us despite our in better and worse ways. We are irreducibly sinfulness, and who is committed to reconciling social creatures and our flourishing cannot be and sanctifying us. Grace enables us to had in isolation. Yet we are also ultimately recognize the moral worth of others in more responsible for ourselves. The shared and more inclusive circles of regard. It dimensions of human existence are interpreted empowers us to choose to act in a fashion and actualized in culturally and historically consistent with that regard. Another way to put diverse ways, but they provide a basis for a this is to say that grace makes us adopted Christian humanism that is important in children of God and therefore siblings of one Catholic ethics.3 another in God’s spirit. To be adopted by God

FALL 2018 FEATURE ARTICLE chausa.org/hceusa Christian Anthropology

is to receive God’s Spirit (Romans 8:15), and therefore, to receive an interior transformation A theological anthropology that that makes new things possible for us as creatures and for our social relations. Adoption is attentive to creaturely incorporates us into a new family that is more capacities, sin, and grace can inclusive and more rightly ordered. And yet we must acknowledge that we are living between help us view dignity not only as the “already and the not yet.” The a stipulation of human worth reconciliation that grace will accomplish is not yet complete. but as a practice of inclusive regard.

HUMAN DIGNITY

What might the broad features of such a consistent with that dignity, what Gaudium et theological anthropology contribute to health spes calls “a genuinely human life.”8 Fourth, in care ethics? Let us consider its import for the Catholic moral tradition, dignity operates as a principle of human dignity, which both founds moral expression of Christian humanism. a right to health care and morally informs the Dignity is therefore emblematic in meaning. practice of health care. Emblematic dignity assumes human embodiment, sociality, and agency, and thereby In Catholic moral tradition one can pick out resists reductionistic views of humanity. four inter-related meanings or functions for dignity: inherent dignity, consequent dignity, In Catholic tradition, dignity also takes its normative dignity, and emblematic dignity.5 meaning from the revelation of humanity in First, dignity refers to the inherent worth of Jesus Christ. Jesus’ life and death clarify dignity human beings.6 Inherent dignity is something as a moral criterion, yoking it to inclusivity, humans have, regardless of abilities or mercy, and a preferential option for vulnerable aptitudes. Yet Catholic tradition also speaks of human beings.9 Importantly, Jesus’ public dignity as though it can be diminished or ministry includes stories in which he challenged forsaken. Gaudium et spes, for example, says that prevailing ideas about good and evil and the we attain dignity “through spontaneous choice social caste systems aligned with those of what is good.”7 So, a second sense of dignity judgments. Those moments of critique and is as a mark of human flourishing or fruit of a subversion are powerful reminders that moral rightly ordered life. We may call this judgments and norms can themselves be tools consequent dignity. Third, human dignity serves that contract our regard for the dignity of as a normative criterion that informs moral others. judgment. We evaluate the moral quality of choices, relationships, and institutions based on A theological anthropology that is attentive to how they align with or violate dignity. creaturely capacities, sin, and grace can help us Normative dignity also has positive moral view dignity not only as a stipulation of human force. It entitles human persons to the worth but as a practice of inclusive regard. conditions necessary for a manner of life

FALL 2018 FEATURE ARTICLE chausa.org/hceusa Christian Anthropology

According to Steven Pinker, dignity is a matter flourishing) waxes or wanes as I nurture of human perception.10 There is some truth to inclusive regard for the inherent dignity of his claim. Even though all human persons have others.12 The theological anthropology sketched dignity by virtue of being human (the inherent earlier helps us to appreciate that dignity is a dignity described above), the challenge we commitment to attribute equal moral worth to confront is that we too often fail to perceive their our fellow human beings. Doing so is a worth and act on it accordingly. Dignity necessary aspect of discerning their inherent concerns the recognition or misrecognition of value (inherent dignity); a condition for human moral worth within social dynamics of realizing the human good (consequent dignity); vulnerability, power, deception, and and applying dignity as a moral criterion truthfulness.11 To be clear, I am not claiming (normative dignity). Attending to dignity as a that human persons only have worth if others practice of inclusive regard is also important for attribute it to them. That would be a denial of emblematic dignity, as a moral expression of the first sense of dignity. Rather, the argument Christian humanism. Because sin can operate here is that: 1) the perception or denial of even in moral accounts of what it means to be dignity is a social process, and 2) dynamics of human and what a good life looks like, it is sin or grace affect our capacities and our essential to engage in self-criticism and to willingness to recognize or reject the moral include and attend to critical voices, particularly worth of others. Dignity, then, cannot be from vulnerable populations.13 reduced to a stipulation or affirmation of human moral worth, or a consequence of a IMPLICATIONS FOR HEALTH CARE ETHICS rightly ordered life, or a normative criterion for evaluating choices and structures, or an emblem Christian anthropology and its illumination of of a larger Christian humanism. The perceptual human dignity give rise to multiple character of dignity means that we must also commitments that are important for health care understand dignity as an active form of regard. ethics. Commitments to respect, justice, mercy, Claims about dignity are exercises in expanding and the common good, for example, flow from or contracting the scope of our moral concern. and also provide an essential context of respect Because sin affects our capacities and for human dignity. Such commitments translate willingness to recognize others’ moral worth, into practical positions, like advocating for we may describe dignity as a dynamic practice access to quality health care. However, as the of “dignifying” others, attributing to them the discussion of sin makes clear, the meaning and worth that is their due and converting our the application of such moral commitments can hearts and social structures accordingly. themselves reflect and contribute to sinful disruption of proper relationships. It follows that the dignity of all cannot be fully respected apart from practices of inclusive If human persons have an inherent worth, yet regard. Moreover, since we are social creatures are subject to social dynamics distorted by sin, who therefore depend on one another for our we must grapple with the fact that some well-being, not only your dignity but my dignity persons are more vulnerable to the really depends on this practice. That is, my own misperception of dignity than others. dignity (as a marker or consequence of human Vulnerability is not merely a given feature of

FALL 2018 FEATURE ARTICLE chausa.org/hceusa Christian Anthropology

human life; it is socially constructed and Since vulnerability is structured, we must unjustly distributed.14 Institutions, policies, examine health systems to identify and address cultural practices, and norms can afford some ways they exacerbate forms of vulnerability. If populations a degree of protection from various they inhibit patient contact and care via profit- sorts of harms and render others far more maximizing structures, underpay employees, vulnerable.15 Human beings harm and oppress contribute to environmental degradation, for each other through institutional and cultural example, appropriate reforms should be mechanisms. They establish and sustain undertaken. Due concern for the unjust hierarchical relations that unduly limit some distribution of vulnerability also requires critical persons’ access to basic resources, render attention to health care professions, where certain groups vulnerable to direct forms of issues of equity and justice are important violence or assault, and obstruct their considerations.21 In short, once we understand participation in social, economic, political, and human dignity not only as a stipulation of cultural life.16 Individual and collective choices inherent moral worth but as a practice of create and sustain systems that organize access inclusive regard, health care ethics, health care and participation, distribute social status, and practices, and health care systems appear as engender vulnerability. Importantly, our choices both culprits in sinful dynamics of can fashion and sustain structures that correct misrecognition of dignity and as vehicles for the maldistribution of vulnerability. Michael restoring dignity to its full expression. Rozier describes “structures of virtue” that can contribute to both the process and the content CONCLUSION 17 of public health. Principles and practices in Catholic health care Health care can and should partake in the ethics presuppose the robust theological sanctifying and dignifying labor of promoting anthropology of Catholic moral tradition. 18 the human and common good. Patient care Ethical analysis of particular issues in health should be characterized by attentive care—for example, reproductive issues—start compassion for the vulnerability of patients and with Catholic views of the person, but they can loved ones.19 Our consideration of human also unfold with limited reference to vulnerability also suggests a high bar for personhood beyond appeals to the first informed consent, ongoing cultivation of meaning of human dignity, the inherent worth cultural competency skills and vigilant critical of persons. There is value in grappling with the examination of the ways medical practice may human person as a creature and agent set sustain structures of vulnerability and cause within dynamics of sin and grace. I argue that harm under the guise of patient care.20 Health Catholic accounts of human dignity need to care professionals must also serve human reckon better with the perceptual and, dignity by leveraging their expertise in the therefore, dynamic character of dignity in order exercise of civic agency, advocating for better to foster more inclusive regard for persons and public health conditions and policies that to sustain critical attention to broader structures correct conditions which unjustly predispose have the ability to increase or limit vulnerability. some populations to specific risks.

FALL 2018 FEATURE ARTICLE chausa.org/hceusa Christian Anthropology

Darlene Fozard Weaver, Ph.D. Professor of Theology Duquesne University Pittsburgh [email protected]

Creating Dialogue

1. What are some ways that sin interferes with our ability to view the dignity of others and make moral decisions?

2. What does “inclusive regard” add to the idea of human dignity?

3. Name some specific areas of Catholic health care that are directly affected by our understanding of Christian anthropology and human dignity.

FALL 2018 FEATURE ARTICLE chausa.org/hceusa Christian Anthropology

Health Inequalities,” Daedalus 128.4 Bioethics and Beyond ENDNOTES (Fall, 1999): 215-251. 1 Benedict M. Ashley, OP, Health Care Ethics: A Catholic 17 Michael D. Rozier, “Structures of Virtue as a Framework for Theological Analysis, Fifth Edition (Washington, DC: Public Health Ethics,” Public Health Ethics 9.1 (April Georgetown University Press, 2006), 19. 2016):37-45. 2 Kevin O’Rourke, OP, A Primer for Health Care Ethics: Essays 18 United States Conference of Catholic Bishops, Ethical and for a Pluralistic Society (Washington, DC: Georgetown Religious Directives for Catholic Health Care Services University Press, 2000), 37. (Washington, DC, 1995), Directive 3. 3 See Lisa Sowle Cahill’s discussion of the value of an 19 Edmund D. Pellegrino MD, David C. Thomasma, Helping Aristotelian-Thomistic understanding of our common humanity and Healing: Religious Commitment in Health Care in Sex, Gender and Christian Ethics (Cambridge: Cambridge (Washington, DC: Georgetown University Press, 2007), 54-66. University Press, 1996), 108-120. 20 See Paul Farmer, Pathologies of Power: Health, Human 4 Darlene Fozard Weaver, The Acting Person and Christian Rights, and the New War on the Poor (Berkley, University of and Christian Moral Life (Washington, DC: Georgetown California Press, 2005). University Press, 2011), p. 52. 21 United States Conference of Catholic Bishops, Ethical and 5 Darlene Fozard Weaver “Human Dignity in Catholic Religious Directives, Directive 7. Tradition,” in Jonathan Rothchild and Matthew Petrusek, Eds. Dignity and Conflict: Contemporary Interfaith Dialogue on the Value and Vulnerability of Human Life South Bend, IN: University of Notre Dame, forthcoming. 6 David F. Kelly, Gerry Magill, Henk ten Have, Contemporary Catholic Health Care Ethics, Second edition (Washington, DC: Georgetown University Press, 2013), 14. 7 Pastoral Constitution on the Church in the Modern World Gaudium et spes, promulgated by Pope Paul VI (Vatican City: 1965), no. 17. 8 Gaudium et spes, no. 1. 9 See the discussion of Jesus as a model in Ashley, Health Care Ethics, 6-8. Ashley, however, goes on to criticize liberation theology as “one-sided,” 19. 10 Steven Pinker, “The Stupidity of Dignity,” The New Republic, May 28, 2008, available online at https://newrepublic.com/article/64674/the-stupidity-dignity. 11 Weaver, “Human Dignity in Catholic Tradition.” 12 The interdependence of our flourishing is a core meaning of the Catholic notion of the common good. See David Hollenbach, SJ, The Common Good and Christian Ethics (Cambridge: Cambridge University Press, 2002). 13 One example is Florencia Luna, Bioethics and Vulnerability: A Latin American View, Ed. Peter Herissone-Kelly, Trans. Laura Pakter (Amsterdam: Rodopi, 2006). Luna argues that the dominance of religious (particularly Catholic) perspectives in bioethics restricts the discipline. See 9-10. 14 See the excellent collection of essays in Mary Jo Iozzio, Mary M. Doyle Roche, and Elsie M. Miranda Calling for Justice Throughout the World: Catholic Women Theologians on the HIV/AIDS Pandemic (New York: Continuum: 2008). 15 Consider the practice of separating immigrant children from their parents or adult companions at border crossings under the Trump administration. Salvador Rizzo, “The Facts About Trump’s Policy of Separating Families at the Border,” The Washington Post, June 19, 2018, available at https://www.washingtonpost.com/news/fact- checker/wp/2018/06/19/the-facts-about-trumps-policy-of- separating-families-at-the- border/?utm_term=.f09538a15f18. 16 For a discussion of social determinants of health see Norman Daniels, Bruce P. Kennedy, Ichiro Kawachi, “Why Justice is Good for Our Health: The Social Determinants of

FALL 2018 FEATURE ARTICLE chausa.org/hceusa Opportunistic Risk Reduction Salpingectomy

Opportunistic Risk Reduction Salpingectomy and Ovarian Cancer

G. Kevin Donovan, MD, MA routine use would be compatible with the Kevin FitzGerald, SJ, Ph.D., Ph.D. Daniel Sulmasy, MD, Ph.D. ethical standards of Catholic hospitals. Currently, it is believed that serous, Ovarian cancer has the highest mortality rate of endometrioid, and clear cell carcinomas are all types of gynecologic cancer and is the fifth derived from the fallopian tube and the 3 leading cause of cancer deaths among women.1 endometrium and not directly from the ovary. Although other cancers are more common, This is in contrast to the traditional view in ovarian cancer is more deadly because its early which ovarian cancers were thought to symptoms are nonspecific, and unlike other originate in the ovary itself. A number of gynecologic cancers, there is no reliable factors may be associated with an increase, or screening test. Breast cancer can be screened decrease, in the risk of ovarian cancer for an for by mammograms, and cervical cancer by individual woman. There is an average overall Pap smears, but ovarian cancer was not reliably risk for the general population of about 1.5%. detectable by measurements of CA 125 or This increases with age, particularly after transvaginal ultrasonography, so these are no menopause, and increases dramatically with longer routinely recommended.2 If a reliable, certain familial and genetic risk factors. The and acceptable method for preventing ovarian most common inherited mutations that increase cancer were available, this would be highly the risk of ovarian and tubal (and breast) desirable. cancers are the BRCA 1 and BRCA 2 genes. For women with a mutation in one of these In recent years, a compelling theory of the genes, the lifetime risk of having ovarian, tubal, development of epithelial ovarian cancer has or peritoneal cancer is 39-46 percent in BRCA been endorsed by the American College of 1 carriers, and 12-20 percent in BRCA 2 4 Obstetrics and Gynecologists (ACOG) and has mutation carriers. There are other identified led to the hope for a risk reducing intervention: genetic risks as well, such as Lynch syndrome 5 salpingectomy or the removal of the fallopian genes, RAD 50 1C, and RAD 50 1D. ]. A tubes. We will look at whether this approach number of familial and individual factors in a provides the reliable intervention needed, and woman’s personal history can lead to a concern whether it is desirable for all patients or only for higher risk with a recommendation for for a select sub-group of patients. Equally genetic counseling and testing. Conversely, importantly, we will examine whether its those patients at average population risk may be less likely to be affected if they have a history of

FALL 2018 FEATURE ARTICLE chausa.org/hceusa Opportunistic Risk Reduction Salpingectomy

oral contraceptive pill use or higher parity.6 As more information is gathered regarding specific mutations and other risk factors, greater Prophylactic salpingectomy, the accuracy of the potential risks for each specific patient will be available to healthcare removal of the fallopian tubes, professionals. may offer clinicians the

The diagnosis of ovarian cancer is particularly opportunity to prevent ovarian challenging as it is often in an advanced, cancer in their patients. metastatic stage when found, resulting in a high mortality rate. Although 92 percent of patients with localized disease at diagnosis may be alive at five years, only 28 percent of patients pursuing this approach, and ACOG has gone diagnosed with distant metastases are alive after on record in support while acknowledging, the same interval, and the latter category “Randomized controlled trials are needed to accounts for the majority of ovarian cancer 7 support the validity of this approach to reduce diagnoses. Clearly, an effective preventative the incidence of ovarian cancer.”10 intervention would be far preferable to the current state of diagnosis and treatment. A salpingectomy can be done as an elective Prophylactic salpingectomy, the removal of the procedure added on to another indicated pelvic fallopian tubes, may offer clinicians the surgery. When this occurs, it is referred to as an opportunity to prevent ovarian cancer in their elective, incidental or opportunistic procedure. patients. That is why the Foundation for This is defined as the removal of the tubes at Women’s Cancer published a consensus the time of another surgical procedure statement declaring, “Preventative surgery to unrelated to any appreciable pathology of the remove the ovaries and fallopian tubes (after tubes at the time of their removal. childbearing is complete) is the most effective We can consider different categories of patients method for preventing ovarian cancer in at risk, and the moral acceptability of proposed women with BRCA 1 or BRCA 2 mutations”. interventions as follows: For these high risk women, the reduction in the risk of ovarian cancer follows the removal of Category 1: Postmenopausal patients at high the ovaries as well as the tubes. Tubal ligation risk for ovarian cancer, based on their genetics alone appears to have a protective effect against or other factors, such as family history. endometrioid and clear cell carcinomas of the 8 Such patients could be considered candidates, ovary. Bilateral salpingectomy alone (without not only for salpingectomy (removal of removal of the ovaries or uterus) does not fallopian tubes), but also oophorectomy eliminate the risk of subsequent ovarian cancer (removal of ovaries), as a primary surgery, as entirely, but it may reduce it to a similar degree well as an incidental or opportunistic surgery. as tubal ligation (25 percent) or even up to 40 9 (See discussion below for ethical analysis) percent. The paucity of data supporting salpingectomy without removal of the ovaries Category 2: Premenopausal patients (with has not deterred physicians and patients from childbearing potential) at high risk for ovarian

FALL 2018 FEATURE ARTICLE chausa.org/hceusa Opportunistic Risk Reduction Salpingectomy

cancer. Such patients could also be considered Removal of the fallopian tubes in a candidates for salpingectomy with removal of postmenopausal woman would dispose of ovaries, as a primary surgery as well as an healthy organs otherwise required for fertility, incidental or opportunistic surgery, once which is normally an intrinsic good. However, childbearing was completed. following menopause, fertility has been lost, and the sterilizing effect of the procedure is no Category 3: Postmenopausal patients at longer an issue. In this case, the healthy tissue average population risk for ovarian cancer, with of the fallopian tubes is removed to serve the no childbearing potential. Such patients could well-being of the whole body, the reduction of be considered as candidates for salpingectomy an otherwise increased risk of cancer. This is on an opportunistic or incidental basis during totally in keeping with the principle of totality.11 other indicated pelvic surgeries. In the second high risk (but potentially fertile) Category 4: Premenopausal patients of average category, the same justification would apply population risk with continued childbearing according to the principle of totality. However, potential. This category of patients could be the patient would be deprived of her fertility by subdivided into three groupings: the procedure. In this case, the principle of double effect would supply sufficient additional a. Those patients undergoing a justification. The principle states that an action hysterectomy for some medically having good and bad effects can be performed indicated reason who could be if the following conditions are met: 1) The considered candidates for an action itself is morally neutral or morally good; “opportunistic” salpingectomy. 2) The bad effect is not the means by which the b. Those patients who might be good effect is achieved; 3) The motive must be recommended for salpingectomy as a intending the good effect only; 4) The good means of effective contraception with effect is at least an equivalent importance to the the possible prevention of ovarian bad effect. cancer as an added benefit. c. Premenopausal patients of average In this case, the removal of a healthy fallopian population risk might be considered tube could be considered morally neutral or candidates for salpingectomy as a morally good if otherwise justified by the means of primary prevention of ovarian principle of totality. The bad effect of cancer. sterilization is not the means by which the good effect is achieved. The intention must be the We will discuss the ethics of each of these reduction in a real risk of ovarian cancer for situations in turn. this patient. Finally, it can be argued that the potential avoidance of cancer could justify an Discussion early loss of fertility in a high risk patient.

The ethical arguments supporting In the third category, a postmenopausal average salpingectomy in the first category of high risk risk woman would have no fertility to lose, so patients would rely on the principle of totality. the procedure would not be considered

FALL 2018 FEATURE ARTICLE chausa.org/hceusa Opportunistic Risk Reduction Salpingectomy

sterilizing. The only remaining ethical dilemma for whom salpingectomy would be considered would be the question of whether the for primary prevention for ovarian cancer. In procedure would result in a sufficient reduction such cases, justification of this procedure by of risk for those patients without a known appeal to either the rule of double effect or the cause for any increase in risk above the average principle of totality could be challenged. It population. There is insufficient data to be becomes more difficult to apply the principle of certain of this, so it would require a low risk of totality when the good that is necessary for the surgery to justify, such as would occur in an general well-being of the whole body, resulting opportunistic salpingectomy, rather than a from salpingectomy, is not well documented primary surgery for this reason alone. The lack for patients who have no increased risk of of solid data to support the validity of the cancer. Moreover, a question of the intention approach for risk reduction in average risk arises when a request for tubal ligation or women would not recommend it as a primary removal is made, making the application of the procedure, as the risks of the procedure would principle of double effect problematic as well. not clearly be exceeded by the benefit. When a proportional reduction of the risk of cancer cannot be ascertained in these cases, As we note, there are two classes of then the persistent request for tubal surgery, premenopausal women of average population may rightly be construed as a masked request risk for ovarian cancer who could be for an intended direct sterilization. Were this to considered candidates for salpingectomy. become a common and unexamined procedure Category 4a encompasses those who have a offered to all women in Catholic hospitals, a medical indication for a hysterectomy, such as real danger of scandal may result. malignancy hemorrhage, or infection. If a hysterectomy is medically indicated, removal of Others have considered the same problem the tubes presents no additional moral or under the same circumstances. The ACOG, medical challenges, as it would already be a while acknowledging the need for data to sterilizing procedure and could be ethically support the validity of the approach, supports justified on the principle of totality. the concept of prophylactic opportunistic salpingectomy during other surgeries in women Patients in category 4b would not be permitted of average risk with no genetic predisposition to undergo salpingectomy under Catholic for ovarian cancer. Part of their argument for auspices as the primary intention would be proceeding with this surgery in low risk women sterilization, even if cancer prevention were an is that “clinicians can communicate that unintended but fortuitous outcome. bilateral salpingectomy can be considered a Salpingectomy would be the equivalent of tubal method that provides effective contraception”12 ligation for contraceptive purposes and would Despite these concerns, Gremmels, O’Brien, et constitute an impermissible direct sterilization al, also endorsed opportunistic salpingectomy in women of average risk. They base their As indicated, the major ethical dilemma for opinion on the lack of screening tools for Catholic health care is in category 4c: Women ovarian cancer, and poor treatment options, who are only of average population risk for and ultimately considered the bad effect of ovarian cancer and are still of childbearing age infertility and removal of functioning tissue as

FALL 2018 FEATURE ARTICLE chausa.org/hceusa Opportunistic Risk Reduction Salpingectomy

within the purview of the patient and physician is that this practice could be primarily to determine.13 The ethicists of the National motivated by an intent to sterilize. If such a Catholic Bioethics Center in their commentary procedure became commonplace in a Catholic on this article stated, “The ethicists of the hospital, it would indeed be at high risk for National Catholic Bioethics Center do not scandal, constituting a “Catholic contraceptive believe that such a surgery would be morally sterilization” as a new standard of care. justifiable if the woman has only an average risk Our position does not ignore the possibility of ovarian cancer”.14 Thus, they ruled out that extenuating circumstances might be found opportunistic bilateral salpingectomy for all to justify this procedure in fertile women. As patients of average risk, even those beyond we have indicated, such a justification should their period of fertility. prove straightforward in those patients who are at high risk of ovarian cancer. It may at times In considering the situation of patients falling be found with greater difficulty in other into the four categories above, we must patients as well. In order to resolve this disagree with the positions taken by both dilemma, we would recommend that all such Gremmels et al., and the NCBC. All those sterilizing procedures in premenopausal women commenting would agree with us that be scheduled only after review by a properly justification for opportunistic salpingectomy constituted ethics committee or subcommittee. can be found for high risk patients, both This would allow consideration of the postmenopausal and premenopausal. justification for this intervention in average risk Surprisingly, the NCBC statement did not patients, recognizing that the definition of address, nor allow for, the possibility of “high risk” and therefore the risk-benefit ratio, opportunistic salpingectomy in a may be a moving target as additional postmenopausal, non-fertile patient. As we information is developed. This routine referral have shown, the justification and benefit for the for ethical evaluation prior to surgery would procedure in an average risk patient may be allow needed and beneficial procedures to low, but the attendant risk would also be low. proceed while protecting Catholic health care Therefore, we find no ethical issue that would institutions from any unneeded risk of scandal. prohibit this for postmenopausal patients in a Catholic hospital. Our opinion is evidently shared by the Catholic Medical Association, as evidenced by their published resolution.15 G. Kevin Donovan, MD, MA Director Finally, unlike Gremmels, et al., we are not Pellegrino Center for Clinical Bioethics comfortable with a routine practice permitting Georgetown University Medical Center salpingectomy during other procedures, such as Washington, D.C. a cesarean section, in fertile women at a [email protected] normally low or average risk of ovarian cancer. Medically, the benefits may be marginal, but the attendant risk would be minimized by making it an opportunistic addition to another surgical procedure. From an ethical perspective, the risk

FALL 2018 FEATURE ARTICLE chausa.org/hceusa Opportunistic Risk Reduction Salpingectomy

Kevin FitzGerald, SJ, Ph.D., Ph.D. Associate Professor, Medical Education & University Professor Endowed Chair Creighton University Center for Health Policy and Ethics Omaha, NE [email protected]

Daniel Sulmasy, MD, Ph.D. Andre Hellegers Professor of Biomedical Ethics Georgetown University Medical Center Washington, D.C. [email protected]

Creating Dialogue

1. How would you state the real ethical question(s) involved in OPRRS?

2. Is this a situation in which new clinical data has substantially changed the way we evaluate a particular care? Can you think of other situations in which new data altered either the ethical question or our answer?

3. The “moral systems” of old used various categories of probability (e.g. probabilism, probabiliorism, tutiorism) to assess moral risk. Is that what the authors are doing in this article?

4. How sure do we have to be before we can act, i.e., what constitutes “moral certitude”?

FALL 2018 FEATURE ARTICLE chausa.org/hceusa Opportunistic Risk Reduction Salpingectomy

ENDNOTES *Note: See a previous article about this topic 1 Salpingectomy for ovarian cancer prevention. Committee entitled, “Prophylactic Salingectomy to Reduce Opinion No. 620. American College of Obstetricians and Gynecologists. Obstet Gynecol 2015;125:279–81. the Rise of Cancer: Ethical Considerations,” 2 Hereditary breast and ovarian cancer syndrome. Practice HCEUSA, winter 2015. Bulletin No. 182. American College of Obstetricians and https://www.chausa.org/docs/default- Gynecologists. Obstet Gynecol 2017:130:e110-26 3 Kurman RJ, Shih I. The origin and pathogenesis of epithelial source/hceusa/prophylactic-salpingectomy-to- ovarian cancer: a proposed unifying theory. Am J Surg Pathol reduce-the-risk-of-cancer.pdf?sfvrsn=6 2010;34:433–43. Erickson BK, Conner MG, Landen CN Jr. The role of the fallopian tube in the origin of ovarian cancer. Am J Obstet Gynecol 2013;209:409–14. Crum CP. Intercepting pelvic cancer in the distal fallopian tube: theories and realities. Mol Oncol 2009;3:165–70. Kindelberger DW, Lee Y, Miron A, Hirsch MS, Feltmate C, Medeiros F, et al. Intraepithelial carcinoma of the fimbria and pelvic serous carcinoma: Evidence for a causal relationship. Am J Surg Pathol 2007;31:161–9. Kamran MW, Vaughan D, Crosby D, Wahab NA, Saadeh FA, Gleeson N. Opportunistic and interventional salpingectomy in women at risk: a strategy for preventing pelvic serous cancer (PSC). Eur J Obstet Gynecol Reprod Biol 2013;170:251–4. 4 http://www.foundationforwomenscancer.org/risk- awareness/ovarian-cancer-risk-consensus-statement/ 5 Hereditary breast and ovarian cancer syndrome. Practice Bulletin No. 182. American College of Obstetricians and Gynecologists. Obstet Gynecol 2017:130:e110-26 6 Cancer Epidemiol Biomarkers Prev. 2015 Apr; 24(4): 671– 676. 7 World Cancer Research Fund and American Institute for Cancer Research, Ovarian Cancer Report 2014: Food, Nutrition, Physical Activity and the Prevention of Ovarian Cancer (Washington, DC: AIRC, 2014), 6, http://www.aicr.org/. 8 Rosenblatt KA, Thomas DB. Reduced risk of ovarian cancer in women with a tubal ligation or hysterectomy. The World Health Organization Collaborative Study of Neoplasia and Steroid Contraceptives. Cancer Epidemiol Biomarkers Prev 1996;5:933–5. 9 Department of Oncology, University of Cambridge, Cambridge, UK 10 Salpingectomy for ovarian cancer prevention. Committee Opinion No. 620. American College of Obstetricians and Gynecologists. Obstet Gynecol 2015;125:279–81. 11 Pope Pius X I I “The Moral Limits of Medical Research and Treatment.” September 14, 1952, www.papal encyclicals.net 12 Salpingectomy for ovarian cancer prevention. Committee Opinion No. 620. American College of Obstetricians and Gynecologists. Obstet Gynecol 2015;125:279–81. 13 National Catholic Bioethics Quarterly 16.1 (Spring 2016): 99–131 14 https://www.ncbcenter.org/resources/news/opportunistic- salpingectomy-reduce-risk-ovarian-cancer/ 15 http://www.cathmed.org/programs-resources/health-care- policy/resolutions/obstetricsgynecology/

FALL 2018 FROM THE FIELD chausa.org/hceusa Ethics, Public Policy & Disability

Ethics, Public Policy and Care of Individuals with Intellectual Disability

Peter Smith, MD, MA community of individuals with intellectual and developmental disabilities (IDD), there has Editor’s Note: There are a number of ethical issues, been a long history of medical-clinical terms some hidden, in care for individuals with developmental that have become stigmatizing and insulting. disabilities that can only be fully understood in light of For example, the terms “moron,” “idiot” and the history of epidemiology. Dr. Smith describes issues “imbecilic” were technical terms meant to related to human dignity, care equity and disparity in categorize individuals with cognitive outcomes as well as problems with the financing of impairments, but are now seen as inappropriate. medical education that exacerbate the problem. This The same is true for “mental retardation.” overview is a version of a talk given by Dr. Smith at CHA’s 2018 Theology and Ethics Colloquium in St. Furthermore, there is an important and Louis. ongoing evolution in the terms used to describe the differences experienced by people with LANGUAGE AND HUMAN DIGNITY disabilities. For example, the term “handicap” is almost never acceptable: The only uses that The terms that describe individuals are aren’t considered disrespectful are: (1) “People important. Any person or organization that used to use the term ‘handicap’; and (2) “He has a seeks to work with individuals with disabilities low handicap in golf.” A term that is much has to learn to use the language conventions more useful, especially in health care, is that are considered respectful, and avoid those “impairment.” In this context, impairments are that are viewed as outdated or disrespectful. losses or diminishments in the function of body parts or systems. For example, a measurable The first and most important rule is to always loss of hearing at certain (or all) frequencies employ “person-first” language. One would would be a “hearing impairment.” say a child with Down syndrome rather than a “Down’s baby”. A second rule is to avoid Likewise, an above-the-knee amputation would language that focuses on victimization or lead to a mobility impairment. Much of the charity. A person does not “suffer” from work of health care is found in the autism spectrum disorder and people are not documentation and support of impairments. “confined” to a wheelchair. Instead, a person The term “disability” is not synonymous with meets criteria for autism spectrum disorder or “impairment.” A disability is the personal uses wheelchairs for mobility. Within the diminishment in life goals due to an

FALL 2018 FROM THE FIELD chausa.org/hceusa Ethics, Public Policy & Disability

impairment. It is crucial for health care disability/definition), there are three main parts professionals and organizations to recognize of the definition: that impairments that would frequently cause disability in the past often do not do so today. Intellectual disability: Intellectual Changes in technology and society have led to a disability is characterized by significant quiet revolution for people with disabilities. limitations in both intellectual For example, there is a man living now who functioning and in adaptive behavior, does not have feet and is one of the fastest which cover many everyday social and humans in recorded history. Did the doctors practical skills. tell his family when he was born with malformations of his legs that he would never Intellectual Functioning: Also called walk? In another example, due to changes in intelligence, “intellectual functioning” law that resulted in the development of special refers to general mental capacity, such education programs, individuals with as learning, reasoning, problem solving, intellectual disability are increasingly engaged in and so on. One way to measure a typical curriculum with their peers, are intellectual functioning is an IQ test. increasingly employed, and increasingly more Generally, an IQ test score of around independent. Furthermore, some losses are not 70 or up to 75 indicates a limitation in perceived as disabilities by the persons who intellectual functioning. experience them, especially if they are present from birth or early in life. Within the Adaptive Behavior: Adaptive behavior community of individuals with autism spectrum is the collection of conceptual, social, disorder, there are some who see others, and practical skills that are learned and termed “neurotypical”, as the ones who are performed by people in their everyday different. lives.

DEFINITIONS OF INTELLECTUAL DISABILITY • Conceptual skills—Language and literacy; money, time, and number Intellectual disability is the term created by the concepts; and self-direction. American Association on Intellectual and • Social skills—Interpersonal skills, Developmental Disabilities (AAIDD) that is social responsibility, self-esteem, used to describe individuals in multiple settings gullibility, naïveté (i.e., wariness), (educational, medical, legal) who have social problem solving, the ability to impairments in cognition. It is similar to follow rules/obey laws and to avoid definitions of mental health impairments found being victimized. in the DSM. Intellectual disability is not a rare • Practical skills—Activities of daily condition: Between 5 and 8 million Americans living (personal care), occupational of all ages (1-3% of the general population) skills, health care, travel/ experience intellectual disabilities. transportation, schedules/routines, According to the AAIDD website, safety, use of money, use of the (https://aaidd.org/intellectual- telephone.

FALL 2018 FROM THE FIELD chausa.org/hceusa Ethics, Public Policy & Disability

Standardized tests can also determine limitations in adaptive behavior.

AGE OF ONSET

Intellectual Disability is one of several developmental disabilities. Evidence of the disability appears during the developmental period, which in the U.S, usually appears before the age of 18. In defining and assessing intellectual disability, the AAIDD stresses that additional factors must be taken into account, The Centers for Disease Control and such as the community environment typical of Prevention (CDC) currently estimate autism’s the individual’s peers and culture. Professionals prevalence as 1 in 68 children in the United should also consider linguistic diversity and States. This includes 1 in 42 boys and 1 in 189 cultural differences in the way people girls. This is much higher than estimates from communicate, move, and behave. Finally, prior to 1975. This significant rise in the assessments must assume that limitations in prevalence of autism is due in large part to individuals often coexist with strengths, and changing definitions of autism and a widening that a person’s level of life functioning will of the criteria for diagnosis. In addition, there improve if appropriate personalized supports has been increased awareness in the general are provided over a sustained period. Only on public and among medical and public health the basis of such many-sided evaluations can professionals about effective treatments for professionals determine whether an individual autism. Heightened awareness about effective has intellectual disability and tailor treatments has spurred a massive public health individualized support plans. effort to increase surveillance and diagnostic efforts, which have led to improved detection. Autism Spectrum Disorder is a Due to the effect of these changes, it is difficult neurodevelopmental disorder that originates in to determine if there has been a rise in the childhood. It is not fully understood and there actual number of individuals with autism. are many different subgroups or “ways to have” Regardless of the causes, autism has become autism. The formal definition has changed one of the most common disabilities tracked by over time and will likely change in the future. the CDC. There are three main features that lead to the diagnosis of an autism spectrum disorder: (1) language difficulties; (2) social relationship difficulties; and (3) atypical behaviors. It is now generally recognized that autism is not the rare condition it was considered to be when it was first described but is rather a more common condition within human variation.

FALL 2018 FROM THE FIELD chausa.org/hceusa Ethics, Public Policy & Disability

DISPARITY IN HEALTH OUTCOMES or residencies to include them in their training. Further, lifestyle factors (often related to For decades, it has been well known that housing options) contribute to worse health for people with ID and ASD experience individuals with ID and ASD. substantially poorer health outcomes than their peers who do not have disabilities. They are An Example: Women with Intellectual Disability (ID) Data from the Medical more likely to die earlier and have poorer health 1 overall. In addition, they are more likely to live Expenditure Panel Survey from 2000 & 2002, with a wide range of complex health conditions, showed that women with cognitive limitations including epilepsy, sensory impairments, were much less likely than nondisabled women respiratory disorders, obesity, diabetes, oral to have had a Pap test within the last year. In health problems, and mental health problems. addition, women with cognitive limitations were also less likely to have received a Historically, health disparities for individuals mammogram in the last year. However, they with ID/ASD were attributed to biology. were approximately 60 percent more likely than For example, individuals with many known nondisabled women to have received a flu shot chromosomal abnormalities that “cause” in the last year, likely due to requirements that intellectual disability also are at increased risk are linked to their housing. These individuals for various negative health conditions. are more likely live in group homes to support Previously, doctors and public health officials their daily living, and many of facilities require generalized this understanding across all residents to have annual flu shots. In addition individuals with ID, presuming that whatever to measurable decreases in health outcomes “caused” their ID was also “causing” their were troubling attitudinal findings: Women worse health outcomes. with cognitive impairments were 49 percent less likely to report that their doctors showed them However, more recent research has respect, 41 percent less likely to report that demonstrated health inequity plays a large role their care provider listened to them and were 48 in the “cascade of disparities.” This newer percent less likely to report that their doctor research has demonstrated that barriers to spent sufficient time with them. access to health care and health promotion programs contribute to their worse health An Example: Down Syndrome outcomes. For example, diabetes prevention Down syndrome (DS) is the most common programs are not designed to take into account chromosomal cause of ID. It is often the the specialized language needs of individuals “face” of ID, due to known facial features. DS with ID and ASD. In addition, the quality of can lead to multiple potential health conditions, management of health conditions is worse for including congenital heart disease, these populations due to the lack of training in gastrointestinal difficulties, increased risk for medical schools and residencies specifically developing some specific cancers (especially in directed towards individuals with ID and ASD. childhood), difficulties with growth (including Doctors have very little or no exposure to increased likelihood of having thyroid training related to ID and ASD because there dysfunction) throughout life, and increased risk are no curricular mandates for medical schools

FALL 2018 FROM THE FIELD chausa.org/hceusa Ethics, Public Policy & Disability

for dementia in older adult life (the exact doctors present accurate information about percentage is still unclear). Down syndrome to parents.

Down syndrome is named after the English In addition, despite being the most common, doctor, John Langdon Down, who in the 19th DS is the least funded major genetic syndrome century was the first to categorize the common in the entire NIH budget. In addition, major features of people with the condition. In Paris portions of funding are directed to screening in 1958, Dr. Jerome Lejeune discovered that projects, not improving the care of individuals DS is a genetic disorder whereby a person has with DS. This means that there is less support three copies of chromosome 21 (“Trisomy 21”) for specialists in DS, which is why there is little instead of two. There are also very rare forms exposure to DS teaching in medical schools and of Down syndrome (less than 6 percent) called residencies. Translocation Down Syndrome or Mosaic Down Syndrome. In 2011, the CDC estimated SUBSPECIALTY IN CRISIS: LACK OF the frequency of Down syndrome in the U.S. is TRAINING AND FUNDING 1 in 691 live births (up from 1 in 1,087 in 1990). The current estimate of people in the U.S. with Down syndrome is over 400,000. Developmental-Behavioral Pediatrics (DBP) Some estimates put the worldwide population and Neurodevelopmental Disabilities (NDD) of people with Down syndrome at more than 6 are two subspecialties within pediatrics. million. Because of the increase of live births Specialists in DBP and NDD undergo years of of people with Down syndrome and the recent extra training after general pediatrics residency dramatic increase in their lifespan, over the next and are the primary clinicians who are 20 years a significant increase in the population dedicated to ID and ASD (and other of people with Down syndrome in the U.S. is disabilities). expected.4 In 2017, a national survey of the current There has been a continued expansion in subspecialists dramatically documented what prenatal screening protocols to detect DS most already knew: There are not enough DBP during pregnancy. However, the expansion in and NDD doctors and the months-long waiting screening has not been matched with expansion time for new patients to see DBP and NDD in the education of physicians. In one study, 45 doctors is the longest in all of medicine. percent of obstetricians admitted their training Furthermore, conditions will soon get worse on prenatal genetic testing was ‘‘ barely because 33 percent (159) of those surveyed adequate’’ or ‘‘nonexistent.’’2 A study of indicated they will retire within 3-5 years and families of children with Down syndrome there are only 31 fellowship graduates each regarding how they received the diagnosis year. The survey also documented that DBP found that physicians gave information that was and NDD doctors are overwhelmed and often factually incorrect, including statements burning out, in part due to the dramatically like “this meant that she would never live on her own or increasing need for their expertise along with hold a job”.3 The situation has become so bad the shortage of DBP and NDD specialists. that states have had to pass laws mandating that

FALL 2018 FROM THE FIELD chausa.org/hceusa Ethics, Public Policy & Disability

This situation is due in large part to the fact from hospitals and surgeries and towards care that medical centers and medical schools are coordination, behavioral health, and social dominated by internal medicine and surgery supports. This is true across all of medicine, departments; there are simply more of these but it is especially important for individuals types of doctors (adults are sicker than kids). with ID and ASD. Further, there will need to In addition, pediatrics focuses on prevention be more support of training programs for and is more outpatient-oriented in its care. In subspecialty doctors, nurse practitioners, the U.S., pediatrics also pays less than other physician assistants, general pediatricians, and specialties. Even when pediatricians do exactly family practitioners. the same medical “things” as internists (as judged by the codes used to bill public-financed insurers), internists make more money because Medicare pays better than Medicaid and Peter Smith, MD, MA pediatricians only bill Medicaid. Compounding Associate Professor of Pediatrics the problem of adult-centered medical centers, University of Chicago School of Medicine there is no equivalent adult subspecialty in DBP Chicago or NDD or representation of ID or ASD when [email protected] curricula are created, budgets are approved, and leadership decisions are made. As a result, very few leaders of medical schools or medical ENDNOTES centers ever explicitly think about ID or ASD, unless they have a relative who has ID or ASD. 1 This is a telephone survey of approximately 31,000 households in Conceptually, pediatrics is too often seen by US, which included 15,831 women aged 18 to 64 years. A total of 296 respondents (representing an estimated 1.14 million women) these leaders as “shrunk” adult medicine. This had a cognitive impairment (a proxy for ID). The survey includes 8 is backwards thinking - all adults were once measures of health care access and 5 measures of satisfaction with children and it has been clearly established that care. 2 Adapted from material accessed at Global Down Syndrome many “adult” disease processes start in Foundation website. childhood. In the 20th century, pediatricians 3 Cleary-Goldman et al., Obstetrics & Gynecology 107(1), 11–17.2006 4 Skotko, Pediatrics 2005;115;64-77 broke from AMA during the “socialized 5 For example, The American Academy of Pediatrics made it medicine” debate. Then in the 21st century, official policy that “every child deserves a medical home,” in 1998. health care reform was based on a “medical home” model that developed from work done for decades by pediatricians.5

ETHICS AND POLICY

Simply put, the U.S. health care system needs to put more money into the support of clinicians who serve individuals with ID and ASD. There is a need for direct support for DBP & NDD practice, including better salaries. In addition, health care spending needs to be shifted away

FALL 2018 FROM THE FIELD chausa.org/hceusa Ethicist Recruitment

Ethics Recruitment and Role Awareness: What We’re Hearing

Jenna Speckart, D.Be. This summary of the 2018 survey will:

Earlier this year, CHA surveyed ministry 1) Highlight the current makeup of active ethicists to determine the current makeup of ethicists across Catholic health care ethicists across the ministry and to evaluate progress with recruitment and education to fill 2) Identify continued challenges based on needed positions within ethics roles. From comparisons to previous surveys similar surveys completed in 2008 and 2014, CHA directed its focus to ensuring both 3) Outline current CHA initiatives focused qualified and prepared ethicists are entering the on recruitment and education field to take the place of those retiring. Efforts were put in place to bring awareness to ethics CURRENT ETHICISTS IN THE FIELD careers, increase recruitment to the field, and align preparation for incoming ethicists. The CHA asked 88 member ethicists to complete purpose of the 2018 survey was to verify if the the survey; 50 ethicists responded, giving a 56.8 landscape was continuing the previously percent response rate. Of the ethicists who identified trends and to provide additional responded, the majority are lay (91.7 percent), directions for next steps based on the results. Roman Catholic (88 percent), males (60 percent) who hold a Ph.D. (70.8 percent) from In his 2015 summary, Ron Hamel outlined key a Catholic institution (75 percent) and consider observations related to the comparison of data themselves active in their faith (92 percent). from the 2008 and 2014 surveys. Several of his key observations pointed to an aging body of The age of the ethicists is uniformly spread as ethicists across the ministries, a shift in 18.4 percent are 30-39; 26.5 percent are 40-49; educational backgrounds of upcoming ethicists, 16.3 percent are 50-59; 24.5 percent are 60-69; and the changing responsibility of ethicists as a 1 and 14.3 percent are over 70. No respondents reaction to changes in health care. Since that are under the age of 30. More telling than the time, CHA and its member organizations have current age is the number of years ethicists plan increased efforts to address the recruitment and to continue to work, with 32.6 percent planning education challenges. just 1-5 more years as an ethicist. Within 15 years, 67.5 percent of respondents no longer

FALL 2018 FROM THE FIELD chausa.org/hceusa Ethicist Recruitment

plan to work as ethicists. This, coupled with CONTINUED CHALLENGES the fact that 54.8 percent of ethics positions have no succession plan, is concerning Comparison of the 2018 survey to previous considering the future demand for positions. surveys provides an avenue to evaluate if recent Currently, 61.5 percent of ethicists say they do efforts across the ministry have positively not have adequate staffing to effectively handle impacted the foreseen challenges with ethics needs within their organizations. The education and recruitment of ethics positions. concern with adequate staffing stands to be The challenge of aging ethicists continues to exacerbated as ethicists are required to take on remain apparent with a growing cohort of more responsibilities and increased geography ethicists over the age of 70 (12 percent due to a shrinking number of candidates for increase) and a shrinking cohort of ethicists open positions. under the age of 30 (4.5 percent decrease). In comparing the future working plans of ethicists, While the majority of current ethicists received we continue to face the challenge of replacing a doctoral training (70.8 percent), today the large cohort of ethicists who plan to retire in majority of organizations require only a the next 15 years, but the 2018 survey revealed master’s degree (73.2 percent) in bioethics, slight growth in the number of ethicists who (43.9 percent), theology (39 percent) or other plan on working for 16 – 30 more years (2.2 similar field (48.8 percent) to hold entry level percent increase). Our organizations continue ethics positions. A combination of education to struggle with succession planning for ethics and work experience is the determining factor positions and the survey comparison indicates for hiring new ethicists with the majority (55 organizations have declined in this area (5.2 percent) of organizations. percent decrease).

As current ethicists prepared for their roles, the While the challenge of awareness of ethics roles majority completed a fellowship or internship and training of new ethicists is not new, several (59.2 percent) in the area of ethics (87.5 limitations for preparing new ethicists still exist. percent) most often at a hospital (62.3 percent). Ethicists point to financial resources and time Today, only one third (33.3 percent) of as the two biggest barriers. Many organizations organizations offer a fellowship or internship to feel increased pressure to cut unnecessary costs prepare future ethicists and many organizations and FTE positions, which negatively impacts are or may be willing to hire someone directly the ability to establish a fellowship or out of graduate school (86.5 percent). internship. Furthermore, greater than half the However, surprisingly many organizations (69.5 ethicists feel there is not enough staff to percent) require at least 2 years of previous address the current ethics demands, which work experience prior to being hired for an negatively impacts the time necessary to mentor ethics position. This data suggests a disconnect and train prospective ethicists. Other listed between requirements to attain an ethics limitations include a lack of necessary position and opportunities to attain experience foundational knowledge in both the clinical and as a new graduate within our organizations. philosophy/theology education to begin a fellowship or internship.

FALL 2018 FROM THE FIELD chausa.org/hceusa Ethicist Recruitment

As the need to fill ethics positions still exists, ethicists reported several effective ways to attract and recruit ethicists to Catholic health care. The most frequently listed ideas include: 1) working with schools (high schools, undergraduate, and graduate) to raise awareness of the field of health care ethics earlier in the student’s curriculum; 2) ensuring and touting the strong pay practices for ethics positions; and 3) recruiting ethics roles within the organization by encouraging interested staff members. These and other ideas are the ongoing focus of CHA and its member organizations and the survey confirms the current efforts are in the right direction.

Jenna Speckart, D.Be. Vice President, Mission and Ethics Mercy Washington Washington, MO Member, CHA Theologian/Ethicist Committee [email protected]

ENDNOTES

1 Ron Hamel, “Ethicists in Catholic HealthCare: Taking Another Look,” Health Care Ethics USA 23, no. 1 (2015) 34-44.

FALL 2018 ETHICAL CURRENTS chausa.org/hceusa Medicaid Makes It Possible

Medicaid Makes It Possible

Fr. Charles Bouchard, O.P., S.T.D. favors the poor, protects human dignity and the common good, and consistently speaks of “us” The obstacles we face as we promote wider access rather than “me.” In our culture, this precept is to health care countercultural to say the least.

It is no secret that federal funding for health programs like Medicaid is in jeopardy. Despite the Affordable Care Act’s goal to provide coverage for more people by allowing states to expand Medicaid with mostly federal funds, only 34 states including the District of Columbia have done so. Currently, three other states are considering expansion, and 13 states remain opposed. They want to avoid further government involvement in health care, reduce costs down the line, or both.

Various members of Congress have proposed replacing the current federal Medicaid program funding with block grants that states could use as they want or impose per person funding limits known as “per-capita caps” to limit As ethicists, we spend a lot of time on the growth. While these proposals reflect a specific and sometimes technical clinical cases, legitimate concern about rising health care what we might call “micro ethics”. These are costs, they would not improve health or cover the fun parts (at least from an ethicist’s more people. About all they would do is pass perspective), but we can’t stop there. We have costs on to states, beneficiaries and to charity to address the big ethical questions, the macro programs like those available in our hospitals. issues that go far beyond clinical settings and into our legislatures, our city halls, and even our However, the effort to preserve and improve streets. We have to build support for access to the Medicaid program is not just continuation and expansion of Medicaid and about politics or finances. It is also an similar programs. To do that, we must have inherently ethical question rooted in a biblical persuasive answers to serious recurring mandate, emphasized in both the Hebrew and questions. There are least three challenging Christian scriptures to care for the poor and the issues involved: Questions about health care vulnerable. This mandate led to the gradual finance, lack of appreciation of Catholic social development of Catholic social teaching which teaching, and clarifying the legitimate role of government.

FALL 2018 ETHICAL CURRENTS chausa.org/hceusa Medicaid Makes It Possible

GET TO THE TRUTH ABOUT HEALTH CARE KEEP TALKING ABOUT CATHOLIC SOCIAL FINANCE. TEACHING.

The economics of health care are enormously Someone once said that Catholic social teaching complicated and not transparent. This is true is the church’s best kept secret. Especially in its on a personal level and on an organizational current form, this teaching is the result of level. If you Google “understanding my centuries of theological reflection which hospital bill,” you’ll see that virtually every coalesced into a body of teaching in the late 19th provider and many payers have tutorials for century. We have failed in our efforts to patients who don’t have a clue what all those catechize Catholics about this tradition. Many numbers mean. On a policy level, few are unaware of it entirely and some of those Americans understand how health care gets who do know about it often see it as optional, paid for in the U.S., or that that we have the or as a matter of “business decisions” rather highest per capita health care costs in the world. than ethical choices. Some Catholic thinkers In 2016, we spent $10,348 per person on health have even managed to merge free-market care costs, compared to Canada, which spent theory Catholic social teaching and come up just $4,752.1 Administration costs are one with an approach Ayn Rand would like: heavy reason for the disparity. In 1999, the on autonomy and subsidiarity, light on administrative costs of health care in the U.S. solidarity and the common good.4 were $1,059 per capita (31 percent of health care expenditures); in Canada they were $307 Michael Gerson, an op-ed columnist for the per capita (16.7 percent of expenditures). Washington Post, notes that our social teaching is Fifteen years later, computerization and other both a blessing and a lost opportunity. Even efficiencies had reduced overhead for both though he is an evangelical, he says, countries, but the U.S. still spent 25 percent of its budget on administrative expenses, while “Modern evangelicalism has an Canada spent only 12 percent.2 Administrative important intellectual piece missing. It costs for Medicare, on the other hand, are far lacks a model or idea of political lower, somewhere between 1.5 and 3 percent, engagement…Catholics [on the other depending on whether you count Medicare hand], developed a coherent, Advantage plans.3 We pay far more than comprehensive tradition of social and residents of any other industrialized country, political reflection. [It] includes a yet millions of people have no coverage, and in commitment to solidarity, whereby some areas, our outcomes are worse than justice in society is measured by the countries that spend less than we do. So, the treatment of its weakest and most argument that universal coverage would be too vulnerable members. It incorporates expensive doesn’t hold much water. We spend the principle of subsidiarity, the idea plenty of money on health care, but we are not that human needs are best met by small spending it wisely. and local institutions.

In practice, this acts as an ‘if-then’ requirement for Catholics [but] it

FALL 2018 ETHICAL CURRENTS chausa.org/hceusa Medicaid Makes It Possible

splendidly complicates their politics. If Medicaid beneficiaries are in working families, you want to call yourself pro-life on and need the services and security of Medicaid abortion, then you have to oppose the to continue to work. Moreover, some adult dehumanization of immigrants. If you beneficiaries are unable to work due to criticize the devaluation of life by disability, illness or caregiving responsibilities.7 euthanasia, then you must criticize the It is also important to note that 39 percent of devaluation of life by racism. If you Medicaid beneficiaries are children who are too want to be regarded as pro-family then young to work. you have to support access to health care. And vice versa. [This view] When we argue for Medicaid, we are invoking requires a broad, consistent view of the principle of justice, but not a cold, justice which…cuts across the mathematical justice where you get what you categories and clichés of American can afford. Instead, our tradition talks about politics. Of course, American Catholics justice tempered by mercy or perhaps routinely ignore Catholic social thought. something like the Jewish biblical concept of But at least they have it.”5 tzedakah. Sometimes called “social justice,” Rabbi Jonathan Sacks says tzedakah is really a CAN ANYTHING GOOD COME FROM combination of justice and charity. It is based GOVERNMENT? on a notion of collective freedom, in which my freedom (or prosperity or health) is not bought Another problem is the general cynicism about at the price of yours. He says flatly, “A society government. I recently referred to an article by in which a few prosper and the many starve, in Atul Gawande6 that was based on his interviews which some but not all have access to good education, health care and essential amenities, is with friends from his home town in southern 8 Ohio. When he asked them whether they not a place of liberty.” It is easy to see where considered health care to be a right, he found Catholic social teaching comes from. In fact, that they generally approved of Medicare, these close connections have sometimes led me because everyone paid into it and everyone to speak of “the Judaeo-Catholic” tradition benefited. They saw this as fair and equitable. rather than the “Judaeo-Christian” tradition, Medicaid, however, was another story. His because many forms of Christianity, including middle-class friends saw it as a giveaway to much of Evangelicalism, reject the assumptions people who didn’t earn it and didn’t deserve it. about community underlying this argument in They felt they were subsidizing the health care favor of individual freedom and the market. costs of people who were able to work. Of course, some people game the system and get This brings us to the idea of the state, which care they could pay for. But the truth is that the has been the object of academic inquiry for majority of working age, adult Medicaid centuries. Where did the idea of the state come recipients do work. This is not widely from? What does it have to do with society and understood. According to recent data from the the common good? Is it a creation of society, Kaiser Family Foundation, 60 percent of or vice versa? working age, non-disabled Medicaid recipients work full- or part-time. Eight out of ten adult

FALL 2018 ETHICAL CURRENTS chausa.org/hceusa Medicaid Makes It Possible

Catholic social teaching generally holds that well-meaning but inept public service that can society comes first, as the natural assembly of in no way contain or manage something as people who work together to create a place that sacred as the common good. He says the is hospitable to all,9 a place where citizens can state’s role as guardian of the common good both contribute to the common good and has been compromised first, because of the benefit from it. Societies use various forms of “symbiosis of state and corporation”, which government to bring about and ensure that clearly was not possible before the profit hospitality. Thomas Aquinas in the thirteenth economy; and second, because every aspect of century had a fairly optimistic view of our lives has been “colonized by the logic of government, or “dominion” as he called it. He the market.”11 We in North America are asked whether in paradise, before the fall, there conditioned to see everything in light of market would have been dominion. One would justice. We lose sight of the fundamental assume that in paradise, free of sin, there would importance of society, which is not market- be no need for it. But he said that even before driven and which is prior to any form of the fall – and presumably in the life to come – government. This is important in our day there is need for authority or dominion in order because much of the resistance to Medicaid to distribute all the goods of creation.10 In view comes not just from anger at a perceived of the current state of the common good and injustice, but from suspicion of the state, which politics in general, this is indeed a hard many people identify with society. Note how teaching! many political campaigns attempt to disparage their opponents by saying that they are “Washington insiders,” or that they have “gone to Washington,” or even that they are part of a “deep state” that is running things behind the scenes, suggesting they have sold out to the bureaucracy. It is crucial to remember that it is not the government or the state that has the responsibility of providing health care, but society, we the people. This means that we have to take our responsibility as members of society very seriously.

If all else fails, it doesn’t hurt to remind ourselves that when we think about health care, there is a little self-interest involved. Even if you are prosperous enough to have coverage for health care, (or education or a safe Some thinkers have looked at our political life neighborhood) do you really want to live in a and concluded that government, the state as we sick, illiterate and lawless society? Since we are know it, cannot be the guardian of the common essentially social creatures, we cannot deny the good. William T. Cavanaugh, for example, says reality of the community in which we live it is more like the telephone company of old, a without a serious dose of self-delusion.

FALL 2018 ETHICAL CURRENTS chausa.org/hceusa Medicaid Makes It Possible

MEDICAID MAKES IT POSSIBLE FR. CHARLES BOUCHARD, O.P., S.T.D. Senior Director, Theology & Sponsorship

Catholic Health Association These are some of the obstacles we face as we St. Louis continue to support universal access to health [email protected] care. We see preserving Medicaid and even expanding it as one step in that direction, but it is not enough. We need to speak more loudly, ENDNOTES 1 Peterson-Kaiser Health System Tracker, “How does health make important distinctions and help our spending in the U.S. compare to other countries?” by Bradley society understand that justice, the common Sawyer and Cynthia Cox. Kaiser Family Foundation Chart Collections, good and even tzedakah are not political Health Spending, Posted: February 13, 2018. 2 D.U. Himmelstein et al., “A comparison of Hospital decorations. They are at the heart of who we Administrative Costs in Eight Nations: U.S. Costs Exceed All are as Catholics. They are negotiable, but not Others by Far,” Health Affairs (Sept 2014 33[9]: 1586-94. 3 Physicians for a National Health Program, “Setting the Record dispensable. They are not the domain of one Straight on Medicare’s Overhead Costs,” posted on February 20, political party, but oblige all Catholics - 2013. http://www.pnhp.org/news/2013/february/setting-the- Republican, Democrat, or independent. record-straight-on-medicare%E2%80%99s-overhead-costs. More recently, Senator Jeff Merkley of Oregon said overhead costs were about 3%. Washington Post, September 19, 2017. CHA has developed a website, https://www.washingtonpost.com/news/fact- checker/wp/2017/09/19/medicare-private-insurance-and- www.chausa.org/Medicaid, that is full of administrative-costs-a-democratic-talking- resources to help us make that argument. It point/?utm_term=.ab3e9281cce6 contains an interactive map that shows state-by- 4 The Acton Institute in Grand Rapids, Michigan, is a good example of this alternate approach. Their web page says the the state Medicaid coverage, statistics (like those we Institute is “was founded on the basis of ten Core Principles, have graphed here), and stories that show that integrating Judeo-Christian Truths with Free Market Principles.” 5 “How Evangelicals Lost Their Way and Got Hooked by Donald not all Medicaid recipients are the “usual Trump,” The Atlantic, April 2018. suspects.” Medicaid coverage extends much 6 Atul Gawande, “Is Health Care a Right?” The New Yorker 7 “Millions of Medicaid Recipients Already Work,” a CNN report further than most of us realize. It is a safety based on figures from the Kaiser Family Foundation. net, as we often say, but in many ways, it is also https://money.cnn.com/2018/01/10/news/economy/medicaid- a social and economic glue that tries to work.../index.html 8 Jonathan Sacks, The Dignity of Difference (London and New York, compensate for the huge disparities in income, Continuum, 2002) especially Chapter 6, “Compassion: The Idea of wealth, health status and access to health care. Tzedakah”, at p. 116. 9 This view is found in Augustine, Aquinas and John Courtney Murray, the esteemed Jesuit theologian of public life. We hope you will join us in raising a national 10 Thomas Aquinas, Summa Theologica, I, q. 96, a. 4, ad 1: voice for Medicaid to Make It Possible for the “Because man is naturally a social being, and so in the state of innocence he would have led a social life. Now a social life nearly 74 million children, the elderly, cannot exist among a number of people unless under the individuals with disabilities, veterans and presidency of one to look after the common good; for many, as such, seek many things, whereas one attends only to one. working families to have access to high-quality, Wherefore the Philosopher says, in the beginning of the Politics, affordable health care services. As we learn that wherever many things are directed to one, we shall always find from Catholic social teaching, health care is a one at the head directing them.” 11 “Killing for the Telephone Company: Why the Nation-State is basic human right essential to human dignity. Not the Keeper of the Common Good,” in In Search of the Common Good,” Miller and McCann, eds. (New York and London: T &T Clark, 2005) 301-330, at 319 and 320.

FALL 2018 RESPONDEO chausa.org/hceusa Revisions to Part Six of the ERDs

Theology and Ethics: Reflections on the Revisions to Part Six of the ERDs

John A. Gallagher, Ph.D. which supports such language. This essay intends to extend the discussion initiated in Ongoing episcopal guidance for a ministry of “U.S. Bishops Revise” by reflecting upon the the church is essential. The church’s social implications of this emerging theological ministries serve as mediators between the language for the health care ministry as well as kerygma, the basic beliefs of the church, and its on the significance of ecclesiology and work in the world. Catholic health care, for systematic theology for health care ethics. instance, is not simply a social welfare organization, it is not simply a medical center or THEOLOGICAL ADDITIONS TO PART SIX a hospital. It is at once a ministry of the church and a social institution that provides a variety of The bishops’ revision to Part Six draws upon a health services to a community. Since document from the Congregation for the approximately the 1990s, Catholic health care Doctrine of the Faith entitled, “Some Principles has entered into multiple arrangements with for Collaboration with Non-Catholic Entities in non-Catholic providers such as mergers, the Provision of Health Care Services.”2 The acquisitions, partnerships, etc. Given this opening paragraph of the Congregation’s history, it is hardly surprising that the American document reads, in part: “From the Church’s bishops should be concerned to maintain the earliest days, certain Christians, as part of their vitality of the religious, the ministerial prophetic witness to the Faith, have dedicated dimension of Catholic health care. The recent themselves to the care of the sick… As history revisions to Part Six of the ERDs articulate and progressed, the same evangelical spirit led to clarify episcopal involvement in the formation the founding of institutions for the provision of of such arrangements and on-going oversight healthcare, clinics, hospitals, homes for the subsequent to the completion of a transaction. elderly, hospices and so on.” “Prophetic,” in this instance, refers to the teaching office of the “U. S. Bishops Revise Part Six of the Ethical and 1 church, as distinguished from its priestly Religious Directives” focuses on the practical (worship) and kingly (governance) functions. implications of the revisions for the ministry The phrase “prophetic witness” also occurs in and the ethical guidance they propose. Its #10 of the Congregations’ document to specify authors also briefly allude to the introduction of the theological and religious harm caused by some new theological language that the bishops have employed as well as a Vatican document

FALL 2018 RESPONDEO chausa.org/hceusa Revisions to Part Six of the ERDs

scandal. Scandal contradicts, misleads or model shift has occurred or, better, is struggling diminishes the prophetic witness of the church. to occur.”3 Can the emergence of terms such as “prophetic witness” or “Church’s witness to The bishops’ revision of Part Six uses the Christ” and their significance for Catholic phrase the “Church’s witness to Christ and his theology be found within the sort of shift to saving message” in the conclusion to the which O’Malley has made reference? Introduction. It is listed as one of the components of a transaction that leaders of The origins of this modal shift in Catholic Catholic health care need to consider in theology begin in the documents of Vatican II evaluating the suitability of a collaborative and in particular with the Dogmatic Constitution on arrangement. Can a potential collaborative the Church (Lumen Gentium), and the Church in the arrangement support and contribute to the Modern World, (Gaudium et Spes). What these two church’s witness to Christ? The abbreviated documents have in common is the goal of formulation “church’s witness” occurs in articulating a contemporary ecclesiology, a Directives 67, 71 and 76. In the first two of theological understanding of what the church is these, the concern is that an inappropriate and what the church does. The church is transaction could “undermine the Church’s defined as the Pilgrim People of God and the witness.” Directive 76 stipulates that Mystical Body of Christ, on a journey through representatives of Catholic health care the world, time, life, history and culture. The institutions serving on boards of non-Catholic role of the church is depicted as bringing the organizations ought not give their approval to Kingdom of God into the world, to engage immoral procedures conducted by such an “the joys and hopes, griefs and anxieties of men entity. “Great care must be exercised to avoid of this age.”4 The church is to be in solidarity scandal or adversely affecting the witness of the with and to give witness to its respect and love Church.” for the entire human family. The role of the church is not limited to the sanctification of its Why is the introduction of new theological members, but extends to the existential well- language in documents from the Congregation being of all of humanity, both its temporal and of the Faith and the U.S. Conference of spiritual well-being. The Kingdom of God Catholic Bishops significant? The language associated with the role of the church Congregation’s document refers to “prophetic in the modern world is related to witness,” the Bishops’ document refers to “the evangelization, “the announcing of Christ by a Church’s witness to Christ and his saving living testimony as well as by the spoken word message.” Are these two distinct theological (that) takes on a specific quality and a special terms or are they an abbreviation or conflation quality in that it is carried on in the ordinary of one with another? Is there a context in surroundings of the world.”5 In a variety of Catholic theology that can enable the reader to papal writings since the Council, from Paul VI appropriately construe the meaning and to the present pope, evangelization has significance of these terms? In commenting on emerged as the dominant theological category the documents of Vatican II, John O’Malley through which the church expresses its role in argued that modifications of theological the world. The new evangelization was the language in church documents suggest “that a central theme of the third synod of bishops

FALL 2018 RESPONDEO chausa.org/hceusa Revisions to Part Six of the ERDs

which resulted in Paul VI’s publication of the Christian sees as created and sustained by Evangelii Nuntiandi and remains a central its Maker’s love, fallen indeed into the bondage theological category for Pope Francis.6 of sin, yet emancipated now by Christ.”8 The word “culture” indicates “everything whereby Vatican II’s teaching regarding what the church man develops and perfects his bodily and is and what the church does signifies a spiritual qualities, he strives by his knowledge theological modal shift in Catholic thought. An and his labor to bring the world under his ecclesiology that construes the church as the control.”9 The world and culture are recognized People of God engaged in the world and as the human milieu in which ordinary life is culture, as participating in “the joys and hopes, lived and as the human context in which the griefs and anxieties” of all of humanity is church’s prophetic witness, the church’s strikingly distinct from the traditional witness to Christ and his saving message ought hierarchical and juridical models of the church. to be brought to bear. Instead of paired theological categories such as nature/grace or Further evidence of such a modal shift can be faith/reason, theological categories such as detected in the Council’s call for a new grace/world, faith/culture emerge as expressive theology. The Fathers of the Council invited of the Church’s engagement with modern theologians “to seek for more suitable ways of cultures and the world. communicating doctrine to the men of their times, for the deposit of faith or the truths are In Ecclesiam Suam, Paul VI reiterated the call for one thing, and the manner in which they are a new theology as part of the church’s mission enunciated in the same meaning and to the world. He indicated that the church’s understanding, is another.”7 Clearly, the bishops dialogue with the world needed to be assembled in a Council of the church were intelligible. “Is it easy to understand? Can it be encouraging articulations of the tradition, of the grasped by ordinary people? Is it in current core truths of the Catholic faith, in an idiom idiom?”10 The Kingdom of God and the that would resonate with the “joys and hopes, Catholic faith were to be articulated in a griefs and anxieties” of contemporary men and manner that would enable the Christian women. Such a theology engaged with the message to be injected into “the stream of ordinary, concrete lives of men and women in modern thought, and into the language, the world, in cultures, would strive to discern cultures, customs and sensibilities of man as he what the tradition means, what its concrete lives in the spiritual turmoil of this modern significance is for life in the world. “Joys and world.”11 More recently, Pope Francis has hopes, griefs and anxieties” are not theoretical, encouraged a “theology - and not just a pastoral they are concrete and existential. theology - which is in dialogue with the sciences and human experience.” Such a The Council also established some new theology would enable evangelization to discern theological language. It provided clarification, “how best to bring the Gospel message to if not definitions, of two key terms, “world” different cultural contexts and groups.”12 and “culture.” The world refers to “the theater of man’s history and the heir of his energies, his Vatican II’s definitions of what the church is tragedies and his triumphs, that world which and what the church does, its call for a new

FALL 2018 RESPONDEO chausa.org/hceusa Revisions to Part Six of the ERDs

theology to communicate the meaning of the The centrality of the church’s witness is also Kingdom of God into the language and into evident in the Directives contained in the new the stream of modern thought, cultures, Part Six. In the first Directive (67), bishops are customs and sensibilities, its clarification of the assigned the responsibility to determine theological meaning of terms such as “world” whether a collaborative arrangement might and “culture” are individually, but above all involve “wrongful cooperation, give scandal, or collectively, signs that a modal shift in Catholic undermine the Church’s witness.” Directive 71 theology “has occurred or, better, is struggling requires ministry leaders to assess “whether to occur.” “Prophetic witness” and the scandal might be given and whether the “Church’s witness to Christ” are theologically Church’s witness might be undermined.” Even grounded in this modal shift. They are images a collaborative arrangement that is morally licit of what the church does in the world. More “may need to be refused because of the scandal specifically, these theological categories are that may be caused or the Church’s witness instances of theological language associated might be undermined.” Finally, Directive 76 with the new theology and the role of instructs leaders of Catholic health care serving evangelization as the defining dimension of the on boards and committees of a non-Catholic church’s role in the world. entity that, “Great care must be exercised to avoid giving scandal or adversely affecting the THE ETHICAL LANGUAGE OF THE witness of the Church.” REVISIONS TO PART SIX The primary norm by which a Newco is to be “The revisions are in clear continuity with evaluated is its capacity to provide a platform, a previous editions of the ERDs,” write the social institution supportive of the witness of authors of “U.S. Bishops Revise Part Six,”and the church, the church’s prophetic witness. with the Catholic moral tradition. In our view The principle of cooperation has become they do not contain any new teaching.”13 A secondary. In this context it serves as a tool or theological reading of this document, however, instrument to assess the capacity of a new suggests that possibly something new, arrangement to contribute to the church’s something innovative is occurring. In the final witness or to determine that such an sentence of the Introduction to the revised Part arrangement would constitute scandal. These Six the bishops write: “They (ministry leaders) Directives are primarily about what the church must do everything they can to ensure that the is and what the church does. The people of integrity of the Church’s witness to Christ and God, laity, religious and clergy, bear the his Gospel is not adversely affected by a responsibility to communicate the kerygma, the collaborative arrangement.”14 A theological prophetic witness, the church’s witness, to standard - prophetic witness, the church’s evangelize the world. The principle of witness to Christ - has emerged as the definitive cooperation has become an instrument for the standard by which assessment of a transaction determination whether a particular engagement between a Catholic and non-Catholic entity within the world and culture is appropriate or should be determined. foments scandal. The language of “witness” clarifies the goal, the virtue if you will, to be pursued in collaborative arrangements as well as

FALL 2018 RESPONDEO chausa.org/hceusa Revisions to Part Six of the ERDs

the vice, the evil, scandal, to be avoided. The the spiritual flourishing of persons in the world. revised Directives provide clarification of what It is always both/and, it is never one or the the goal of a collaboration ought to be an other. The common good is a term that derives enhancement, a vehicle for the church’s much of its meaning in reference to the prophetic witness. What the church strives to kerygma, the prophetic witness, and the accomplish in its ministry to the world and church’s witness. Such witness is for the culture has become the centerpiece of the spiritual lives of men and women, but also and discernment process. at the same time, their material welfare in the world. It means bringing “the Good News into The previous edition of the ERDs referred to all the strata of humanity, and through its the manner in which collaborative influence transforming humanity from within it arrangements might “help implement Catholic and making it new.”18 social teaching.”15 The revised Directives refer to the fact that Catholic health care has worked CONCLUSION collaboratively with other providers “in serving the common good.” Further on in the Church documents are read for the light they Introduction, the bishops propose that “in shed on the current life of the people of God. pursuit of the common good” ministry leaders How do such documents nurture, support and may need to seek non-Catholic partners.16 guide the Pilgrim People of God in their Catholic social teaching and the common good journey to the end time? They seek at some are inherently interrelated and complementary. level to foster the hopes and to allay the griefs, Why, then, the shift from one term to the fears and anxieties of women and men living other? The common good is used in this ordinary lives in the world and their respective context because it is concrete, it is the actual cultures. Such documents confirm the rationale systems, religious, economic, social, political, for joys and celebrations associated with life in educational, etc. that provide, or fail to provide, the world as well as guidance for the the goods and services essential to the well- uncertainty and perplexity that are part of the being of persons in community. The common Christian life. good is in the world and in culture. The Church in the Modern World depicted the common good The significance of a text does not lie in the as “the sum of those conditions of social life mind(s) of its author(s). The quest for the which allow social groups and their individual author’s intent is usually a futile journey. The members relatively thorough and ready access original intent or goal of documents composed to the goods essential to their own by committees and approved by a group is fulfillment…,”17 ready access to the goods virtually impossible to determine. What is of essential to the full range of human flourishing theological and religious significance in the and the human dignity of all persons. The revision of the Part Six is not the intent of the common good supports the temporal welfare authors, but rather the manner in which the of persons in community living within the document is received, read, and appropriated as world and culture. It is concerned with their guidance by health care leaders. The modal physical and psychosocial needs. But the shift referred to by John O’Malley, the new common good is simultaneously committed to theology called for by Vatican II and

FALL 2018 RESPONDEO chausa.org/hceusa Revisions to Part Six of the ERDs

subsequent papacies, the new understanding of what the church is and what the church does are all part of the current theological and religious milieu among American Catholics into which the revisions of Part Six are received.

In the bishops’ recent revision to Part Six there is something new coming forward. What the church is and what the church does frames its engagement with the world and culture. Ecclesiology is the theological centerpiece of these revisions. In the past, systematic theology provided the Catholic community with categories in which the relationship between nature and grace, faith and reason could be thought through and articulated. For contemporary theology, the world and culture are the realities to which grace and faith need to be both juxtaposed and related. These Directives are not primarily about the principle of cooperation nor are they principally about the discernment of moral evils, although these remain elements of an appropriate discernment of the church/world, faith/culture tension. The revisions to Part Six of the ERDs are primarily concerned to ensure that prophetic witness, the church’s witness to Christ, the new evangelization are vitally engaged in the world and culture through the health care ministry.

Citations from the documents of Vatican II and papal writings are taken from these documents as they appear on the Vatican web page.

JACK A. GALLAGHER, PH.D. Ethicist, Retired New Buffalo, MI [email protected]

FALL 2018 RESPONDEO chausa.org/hceusa Revisions to Part Six of the ERDs

ENDNOTES

1 C. B. and N. H., “U.S. Bishops Revise Part Six of the Ethical and Religious Directives,” Health Care Ethics USA, Summer, 2018, 12 - 15. 2 National Catholic Bioethics Quarterly, Summer, 2014, 337 - 340 3 John O’ Malley, S. J., What Happened at Vatican II, (Cambridge: The Belknap Press of Harvard University Press, 2008), 49. 4 Gaudium et Spes, #7. 5 Lumen Gentiium, #35. 6 Evangelii Gaudium. 7 Gaudium et Spes, #62. 8 Ibid., #2. 9 Ibid., #53. 10 Paul VI, Ecclesiam Suam. #81. 11 Ibid., #61 12 Francis, Evangelii Gaudium, #133. 13 “U.S. Bishops Revise Part Six, 12. 14 Ethical and Religious Directives for Catholic Health Care Services, 6th edition, 24. 15 Ethical and Religious Directives for Catholic Health Care Services, 5th edition, 34. 16 ERDs, 6th edition, 23. 17 Gaudium et Spes, 26. 18 Paul VI, Ecclesiam Suam, #18.

FALL 2018 LEGAL LENS chausa.org/hceusa

Legal Lens

rule-making. Victoria Pelham, Health Care on Students from the Saint Louis University School of Bloomberg Law, Aug. 30, 2018 Law Center for Health Law Studies contributed the https://www.bna.com/generation-sicker-kids- following items to this column. Amy N. Sanders, n73014482133/ associate director, supervised the contributions of Brandon Hall (J.D. anticipated 2019) and Valerie De Wandel (J.D./Ph.D. expected 2020). THE REMEDY OF SURPRISE MEDICAL BILLS MAY LIE IN STITCHING UP FEDERAL LAW

GENERATION OF SICKER KIDS FEARED A gap in the protections afforded to out-of- UNDER IMMIGRATION PROPOSAL network beneficiaries under the Employment Retirement Income Security Act of 1974 A long anticipated Trump administration (ERISA) has led to a renewed focus on immigration proposal may greatly disturb the exorbitant balance-billing charges by out-of- country’s pediatric care system and lead to the network providers and has led to a demand for closing the so-called “balance-billing loophole”. intensification of federal authorities While in-network providers are contractually determining whether immigrants and their obligated to predetermined rates for services children would receive public benefits like with insurance companies, out-of-network Medicaid and supplemental nutrition. Under providers have no such contractual ceiling and the proposed plan, the Department of thus, can charge whatever rate they deem “fair” Homeland Security proposed rule (RIN 1615- for the services provided. ERISA regulates AA22), the number of immigrants who would employer-sponsored insurance plans which are “self-funded,” i.e., that the employer be denied public benefits could rise from 3 contributes payments to. Further, ERISA, has percent to 47 percent. According to a nearly widespread field preemption over spokesperson from the American Academy of insurance, limiting states’ abilities to try to Pediatrics, the impending rule is already having rectify this harm to patients. And while states an impact as some immigrant families have continue to try to work around ERISA’s decided not to renew coverage. According to preemptive scope, it appears there are at least Sara Rosenbaum, former chair of a three viable solutions moving forward: (1) amending the ERISA statute, (2) revise the congressional Medicaid policy advisory group federal regulations regarding out-of-network and a health policy professor at George payments, and/or (3) allow the issue to Washington University, efforts to release the continue in state courts—such as Georgia, rule could be slowed by the logistics of Texas and Colorado—continue to weigh in the determining the fiscal impact, as is required for determination of “what is a fair price?”

FALL 2018 LEGAL LENS chausa.org/hceusa

Michelle Andrews and Julie Appleby, NPR, Sept. 10, 2018 THE NEW APPLE WATCH SHOWS THE https://www.npr.org/sections/health- MONEY BIG TECH SEES IN HEALTH shots/2018/09/10/645561263/the-remedy- for-surprise-medical-bills-may-lie-in-stitching- up-federal-law The new Apple Watch is proof that Big Tech companies are trying to reconfigure health care LACK OF SURGICAL CARE IN U.S. PRISONS to a new, unique image where technology could MAY COST LIVES potentially become the forefront of medical care. The new watch, for example, can monitor According to the report published in JAMA, heart beats for abnormal, dangerous conditions, autopsy reports examined on behalf of inmates using an electrocardiogram. This new that died while at Florida’s Miami Dade County technological advancement indicates that the revealed that two-thirds of those deaths business of keeping people healthy is a logical occurred because of surgical neglect. Dr. Tanya frontier. Although this new innovation seems Zarikson, the study’s principal author, indicated enticing, there are logical reasons for that according to her team’s findings, out of skepticism. Concerns among analysists include 301 autopsy reports, 51 deaths were due to lack false positives and panics when technology of surgery, and 18 were caused by trauma. fails, even with other companies, such as Experts indicated that this calls for greater Google and Amazon, use teams of health care attention, as not all correctional facilities practitioners to evaluate and accommodate the conduct autopsy and data collection, meaning providing of information. These tech giant that although the study was small, this neglect is companies becoming involved in the health likely occurring on a greater scale. According to realm have encouraged others, such as Uber Dr. Joe Hines, a professor and chief of surgery Technologies Inc. and Lyft Inc., to also mark at David Geffen School of Medicine, the call their territory in this techno-health frontier. for greater concern to this incident is Zachary Tracer, Spencer Soper, Gerrit De prominent because the quality of care our Vynck, and Dina Bass, Bloomberg, Sept. 15, incarcerated population is receiving reflects the 2018 care allotted to other undermined populations https://www.bloomberg.com/news/articles/2 that do not have access to quality healthcare. 018-09-14/the-new-apple-watch-shows-the- Linda Carroll, Reuters Health News, Sept. 12, money-big-tech-sees-in-health 2018 HTTPS://WWW.REUTERS.COM/ARTICLE RULING ON HEALTH CARE SUBSIDIES /US-HEALTH-PRISON-SURGERY/LACK- COULD PROVE COSTLY FOR GOVERNMENT OF-SURGICAL-CARE-IN-U-S-PRISONS- MAY-COST-LIVES-IDUSKCN1LS2KN A ruling by a U.S. Court of Federal Claims judge in favor of a Montana insurer that had

FALL 2018 LEGAL LENS chausa.org/hceusa

sued the Trump administration for abruptly BUYER BEWARE: NEW CHEAPER ending cost-sharing reduction payments INSURANCE POLICIES MAY HAVE BIG guaranteed by the Affordable Care Act (ACA) is COVERAGE GAPS likely to have a considerable ripple effect. The judge held that [u]nder the ACA, it is “clear and unambiguous” that the government had an Citing the Affordable Care Act’s (ACA) obligation to provide insurers those cost-sharing insurance being too expensive, the Trump subsidies, which are discounts that enhance the administration has greatly expanded the value of health insurance policies. And the permissible duration of short-term plans from government can expect these costs to snowball, three months (under the Obama as other similar cases are pending for recovery administration) to three years (plan duration of the promised subsidies, including one suit one year, that duration being renewable twice). that has been certified as a class action suit. In Short-term, limited duration insurance plans defense of the Trump administration, the have created cheaper alternatives to traditional federal government has argued that President marketplace plans under the ACA, but their Trump’s decision to end the payments is expansion has exposed a number of negative permissible because Congress did not intend to effects experts expect these plans to cause. fund them, as evidenced by the lack of express First, because the plans are state-regulated, the authorization of funds for such. But the ACA plans do not have to comply with neither the states that the Secretary of Health and Human ACA’s coverage requirements nor its essential Services (HHS) “shall make periodic and health benefit mandates. Second, are hidden timely” payments to insurers that are “of equal costs. Patients with short-term plans rarely get value” to the cost-sharing reductions that are prescription coverage, are subject to high passed along to customers. And while we await deductibles, and only cover a percentage of the outcome of the similar and outstanding hospital or other costs. Third is the lack of cases against the administration, there are hopes reinvestment in coverage and care by the that insurers finally have sufficiently accounted insurance provider, based on a report by the for all of the market disruptions imposed by the National Association of Insurance administration, and can better predict future Commissioners demonstrated that term plans costs under the administration’s policies. Robert paid out only 55 percent of their premiums in Pear, The New York Times, Sept. 22, 2018 actual healthcare, whereas under the ACA, HTTPS://WWW.NYTIMES.COM/2018/09/ companies are “required to spend 80-85 percent” of premiums for health care or else 22/US/POLITICS/TRUMP-INSURANCE- issue a refund to customers. Finally, are the SUBSIDY-PAYMENTS- likely disruptions to the future of the ACA OBAMACARE.HTML marketplace. The Departments of Health and Human Services (HHS) and the Congressional Budget Office (CBO) estimate that over the next five years, an estimated 1.6-2 million

people may leave the marketplace in favor of the short term, limited duration plans, many of whom will be younger and healthier individuals,

FALL 2018 LEGAL LENS chausa.org/hceusa

which will drive up the marketplace plan costs. against the woman. Jacklyn Wille, BNA, Oct. 1, Alison Kodjak, NPR, Oct. 1, 2018 2018 https://www.npr.org/sections/health- https://bnanews.bna.com/employee- shots/2018/10/01/652141154/buyer-beware- benefits/surrogacy-expenses-not-covered-by- new-cheaper-insurance-policies-may-have-big- health-plan-judge coverage-gaps

SURROGACY EXPENSES NOT COVERED BY

HEALTH PLAN: JUDGE

A federal district court judge in Maine became the most recent to hold that the terms of the plan are controlling in employer-sponsored ERISA plans, finding that the plan reasonably denied coverage to a woman for expenses related to a surrogate pregnancy, because the terms of the plan specifically contained an exclusion for costs related to such surrogate pregnancy. The woman claimed that because it was not her own egg being fertilized, she was a “gestational carrier” as opposed to a “surrogate.” The judge found that argument unpersuasive, holding that based on the terms of the plan specifically excluding “surrogate exclusion,” it was “hard to believe” that the plan intended to cover either a gestational carrier or a surrogate carrier, holding: “just as it would not be inconsistent for a plan to cover surgical expenses, but exclude expenses for [elective] cosmetic surgery, it is not inconsistent for the plan to cover pregnancy costs, while excluding costs for a certain type of pregnancy.” In other words, the terms of the plan agreement, unless overtly ambiguous, control the coverage limitations of the plan. While here, the judge noted some ambiguity in the terms of plan, the judge—based on interpreting the terms of the plan agreement and based on Florida District Court precedent—ultimately held the plan’s interpretation was reasonable, and thus, ruled

38 Copyright© 2018 CHA. Permission granted to CHA-member organizations and Saint Louis University to copy and distribute for educational purposes. A Quarterly Resource for the Catholic Health Ministry TALK TO US! Health Care Ethics USA © 2018 is published quarterly by the Catholic Health Association of the United States (CHA) and the Albert Gnaegi Center We want to hear from you! for Health Care Ethics (CHCE) at Saint Louis University. If you have questions, Subscriptions to Health Care Ethics USA are free to members of CHA and the comments or topics you Catholic Health Ministry. would like discussed, please EXECUTIVE EDITOR contact the Health Care Fr. Charles Bouchard, OP S.T.D., CHA senior director, theology and sponsorship Ethics USA team: ASSOCIATE EDITORS Tobias Winright, Ph.D., Hubert Mäder Chair of Health Care Ethics, [email protected] Albert Gnaegi Center for Health Care and Ethics, Saint Louis University, and Nathaniel Hibner, CHA director, ethics. MANAGING EDITOR Ellen B. Schlanker, CHA director, communications

LAYOUT DESIGN Jennifer M. Wiegert, CHA communications specialist

OF NOTE CONTRIBUTORS Amy N. Sanders, assistant director, Center for Health Law Studies, Saint Louis University School of Law, Jacob Harrison, Ph.D. student, Albert Gnaegi Center for Health Care Ethics, Saint Louis University, and Lori Ashmore-Ruppel, CHAUSA.ORG mission program and research associate, Catholic Health Association.

Your input is valuable to us! Please reach out to the Health HealthCare Care EthicsEthics USA USA team with any Invitationquestions, to Authors comments or topics The Catholic Health Association’s quarterly publication, HCEUSA, is an important resource for professionalsyou working would and like researching us to explore. in the field of Catholic health care ethics. The publication addresses current ethical trends within the Catholic health ministry,hceusa giving a @platformchausa for.org dialogue between members and the wider community. HCEUSA seeks to be a rigorous intellectual and theological examination of the rapidly advancing technologies within medicine and contemporary moral dilemmas impacting social policy and health care ethics. Through the lens of those working within multiple environments (hospital, system, academia, and public policy) the authors of HCEUSA bring together varied viewpoints and expertise towards complex ethical questions. Even though our authors come from such diverse backgrounds, our goal is to advance the Catholic church’s mission within the ministry of health care.

Formatting Peer review committee will evaluate each submission for potential acceptance into one of the following sections:

Featured Article: academically rigorous and researched articles on an important ethical question facing the broader field. Word count between 2,000-3,000. From the Field: an opportunity to share about a practice or experience which may provide a valuable lesson to colleagues. Word count between 1,000-2,000. Respondeo: In the tradition of St. Thomas Aquinas, authors are invited to respond to previous articles, providing constructive critique or furthering the original author’s argument. Word count between 1,000-2,000. Ethical Currents: a brief reflection on a current debate or issue within theology or ethics. Word count between 500-1,000.

Articles should utilize the Chicago Manual of Style and be saved as a Word document. Submissions may be edited as necessary by the editors of HCEUSA and are copyrighted by the Catholic Health Association of the United States.

Submitting To submit a 250-word proposal, or to contact the editors please email: [email protected]