GROUNDS by The Virginia Journal of Bioethics

SPRING 2019 | ISSUE 1 | VOLUME 3

GROUNDS THE VIRGINIA JOURNAL OF BIOETHICS

WHICH IS WHICH

An Analysis of Ambiguous Genitalia and Cross Cultural Bioethics

PASSIVE AND ACTIVE EUTHANASIA

The Medical Trolley Problem AND MUCH MORE

MANY ANIMALS ARE EQUAL A Consequentialist Cognitive Basis for Moral Considerability

IN THIS EDITION 3

Real Talk on Disability, Dependency, and Ethics

The Role of States such as Virginia’s Consent and Confidentiality Laws in Limiting African American Female Adolescents’ Access to Reproductive Health Care

“Ain’t I Human?”: The Role of Bias and Erasure in the Medical Subjugation of African/Black American Patients, A Personal Narrative

Passive and Active Euthanasia: The Medical Trolley Problem

Centered

Limericks as playful simulacrums of time, imaginations of the polity, and other (bio)ethical adventures

OUR TEAM EDITOR IN CHIEF Katharine Biegert

EDITORIAL BOARD Aashish Batheja Logan Brich Morgan Carter Quinn Funston Gelare Ghajar-Rahimi Nayana Macmillan Joseph Pizzuti Jennifer Price Sara Rizvi Adam Seid Helina Sirak Jacqueline Slobin Rachel Tinsley Malvika Venkataraman Nathan Welch Ryan Welch

DESIGN EDITOR Malvika Venkataraman

DESIGN TEAM 35

Many Animals Are Equal: A Conse quentialist, Cognitive Basis for Moral Considerability

Frank Peng Lobna Raya Ines Softic Ryan Welch

Ethical Dilemmas in the Terminal Condition Requirement for Living Will and Physician Aid-in-Dying Policies in the US

vabioethics@gmail.com

VISIT US AT vabioethics.com

Which is Which and Why This: An Analysis of Ambiguous Genitalia and Cross Cultural Bioethics 2

REAL TALK ON DISABILITY, DEPENDENCY, AND ETHICS ADAM BEDDAWI

University of Virginia Alumnus

Abstract Notions of disability and dependence have been at the center of moral and political development in the United States dating back to the colonial period, constituting immigration law as well as policy on accessibility, accommodations and education. In this paper, I consider the justifications for practices such as gene editing, liberal eugenics apologia, and ableist discourse as particular instantiations of this moral and political development. I do this in order to illustrate how contemporary notions of disability and dependency give rise to neo-eugenic practices, and to offer a criticism of this process. To that end, I will consult Robin Dembroff’s paper entitled “Real Talk on the Metaphysics of Gender” and Eva Kittay’s “Dependency.” The sum total of this work will be a positive argument for the normative importance of disability and dependence which serves as a sufficient rebuttal to contemporary practices of eugenics and the speech acts used to justify them. In August of 2017, CBS News published a report on data compiled since the early 2000s revealing that, in Iceland, 100 percent of mothers who opt for prenatal screenings and receive a positive test that their child has Down syndrome go on to terminate their pregnancies. These marks are mirrored by a 67 percent rate in the United States, a 77 percent rate in France, and a 98 percent rate in Denmark. In Iceland, there were only three babies born with Down Syndrome in 2009.1 Practices such as the one in Iceland leave many feeling ambivalent,2 torn between the intuition that the practice and its justifications are morally problematic, and the recognition that there are limits on the ability to impose on any one person or family’s choice to either engage in that practice or subscribe to its justifications. In achieving its conclusion, this paper prescribes a suitable response to this ambivalence. In order to do this, I’ll consider the way in which disabled individuals are broadly regarded as being a burden on society and families, or as 1. Lajka, Julian Quinones Arijeta. “‘What Kind of Society Do You Want to Live in?”: Inside the Country Where Down Syndrome Is Disappearing.” CBS News, CBS Interactive, 14 Aug. 2017, www.cbsnews.com/news/down-syndrome-iceland/. 2. Take the ongoing debates held over these very practices in the Washington Post’s op-ed section. On March 9 of last year, Ruth Marcus took a pro-choice stance in arguing for a woman’s right to abort a fetus with Down Syndrome. 5 days later, conservative commentator George F. Will argued in the Washington Post that the practice in Iceland amounted to a genocide. Will also pointed to a French court’s decision to bar French television from running a video devoted to how children with Down syndrome may lead happy lives as an example of “today’s moral confusions.” On March 30, Tim J. McGuire wrote glowingly of the value which his son Jason, who has Down syndrome, provides his life. McGuire also makes a case for the necessity of building “a basic respect for all lives” which focuses on the notion that “something about every human being gives life meaning.”

being unhealthy or dependent in an exceptional way. This way of considering disabled individuals is certainly expressed in the statements of someone like Kari Steffanson, an Icelandic geneticist and founder of deCODE Genetics, who attributed the staggering termination numbers in Iceland to “heavy-handed genetic counseling.” Steffanson contends that there is not “anything wrong with aspiring to have healthy children,” and that the challenging questions regard “how far we should go in seeking those goals.” Steffanson notably makes explicit mention of “healthy children,” but particularly of note here is the normative function of ‘health.’ For Steffanson, not wanting to bring disabled individuals to term is understandable given their essential unhealthiness; the relevant question regards the extent to which this understandable preference for healthy people should be realized. This way of considering disabled individuals is also commonly expressed outside of this more provocative context. Last year, the philosopher Jonathan Anomaly published a defense of eugenics in the Monash Bioethics Review.3 In his paper, Anomaly attempted to repackage eugenics within a liberal paradigm through appeals to “heritable traits that we value”4 and the supposed moral virtues of early 20th-century sterilization laws.5 For Anomaly, eugenicist public policy stands to benefit society in ways which are worth the potential harms to those individuals who would directly suffer — those who don’t have “heritable traits that we value.” He closes his paper with particular public policy suggestions which follow from this eugenics apologia. Consider, additionally, the following concessions any well-meaning parent or caretaker might make about the prospect of raising a child with disability.6 They may say they would rather not bear the burden of the personal, financial and economic costs associated with paying for care and equipment, of foregoing some of their own personal projects, and of significantly adjusting their plans and expectations for their child upon receiving a diagnosis of disability. They might also say that doing so will be very difficult, and a 3. Anomaly, J. Monash Bioeth. Rev. (2018) 35: 24. 4. Anomaly, J. Monash Bioeth. Rev. (2018) 35: 25. 5. Anomaly explicitly makes reference to Buck v. Bell, which upheld the state of Virginia’s right to sterilize the “feeble minded,” and its compatibility with the moral principle that “a citizen can be required to undergo a procedure if the cost to him is trivial compared to the social benefits.” 6. I don’t mean for this list to be necessarily exhaustive. In fact, it was constructed only after long, mostly very difficult, conversations with my parents — both of whom are caregivers for a child with significant cognitive and physical disabilities — two summers ago. As such, it’s merely representative of a slice of the experience of families who care for a severely disabled member, though presumably one that is relatable for many.

caregiving relationship may not bear fruit before many hard years of caregiving, years which may be hard to commit to, or to use as a silver lining, until the experience of those fruits in the first place. If they had other kids, those parents may justifiably worry that the increased focus on caring for their disabled child — coupled in some cases with economic constraints on their ability to outsource that care ― will have negative effects on the long-term outcomes for all of their children. Steffanson, Anomaly and this hypothetical, well-meaning parent make appeals and advocate for particular actions which are premised on the notion that disabled individuals are uniquely difficult or undesirable ― a burden on society rather than the proper subject of emotional and economic investment. Their appeals are undergirded by problematic assumptions. For instance, all suggest either that there is something genetically essential about health and wellness outcomes, that the resulting disparities ought to be resolved through individual reproductive choice rather than collective political and social action, or both. In the Iceland case, ascribing healthiness or burden-ness to non-disabled or disabled individuals has a moral valence in the context wherein such an expression serves as justification for the practice of abortion. This moral status may vary in other contexts, whether as debate behind the implementation of certain public policy, or as dialogue which, in part, develops a society’s normative attitudes to practices such as gene selection, genetic engineering, family planning, and community building. In order to determine what we ought to do in those contexts, I will articulate a view on the expression of such beliefs which renders their moral status in those contexts. In order to do this, I’ll use Robin Dembroff’s paper, “Real Talk on the Metaphysics of Gender,” to sketch a framework through which one could respond to any of these practices and their respective justifications. I will demonstrate that, while there are some inadequacies with Dembroff’s view which leave it insufficient to apply in the case of disability on its own, Dembroff’s work nevertheless provides valuable insights. I will then consult Eva Kittay’s “De-

pendency” paper, which, I will argue, provides a sufficient response through Kittay’s care-based ethics to the moral problematics alluded to earlier. I will ultimately argue for a view that centers the normative importance of disability and dependency and admits about the beliefs of individuals like Steffanson, Anomaly and the hypothetical well-meaning parent that (a) they may be justified and motivating, and yet still (b) in certain contexts, expressing those beliefs is morally wrong — even if, in doing so, we are being accurately descriptive of some state of affairs. I will close my paper with a discussion of some of the implications of these practices and justificatory beliefs with respect to society’s current political and ethical behavior. In “Real Talk,” Dembroff is writing in response to the North Carolina GOP’s 2016 “bathroom bill” which bans transgender people from using the bathroom concordant with their gender identity. Dembroff uses the bill, and the discourse surrounding its passage, as a way to analyze our practice of ascribing gender. Their arguments are extensible to categorical ascriptions more broadly. Dembroff limits their consideration of ascriptions to only those propositions which express metaphysical truths that describe or imply a constitutively socially constructed state of affairs. Let me unpack those terms: a metaphysical truth is a truth about the necessary and sufficient conditions of membership in a given category. Something is constitutively socially constructed if and only if its definition necessarily makes reference to social factors. The claim “trans women are women,” for example, would be metaphysically true provided that ‘trans women’ satisfy the membership conditions required of ‘women.’ It describes or implies a constitutively socially constructed state of affairs because the category ‘women’ is really only definable if reference is made to the concept’s socio-historical construction. So a proposition like “trans women are not women,” which is more or less the expression of the bathroom bill, would express the proposition that trans women are not, and in fact should not be, treated as women qua the consensus understanding of what womanhood entails. Insofar as these states of affairs are socially constructed, then the responsibility to deconstruct them falls within society’s purview.

and medical resource apportionment, among other things, which are themselves historically contingent and which make the particular conditions of life for disabled children unhealthy or burdensome.8 By basing the “moral community” on this essentialization, a metaphysics-first thinking allows for the administering of harms to those who would otherwise have a plausible claim to moral consideration. Furthermore, all of the previously discussed beliefs and attitudes partly consist in speech acts, the utterance of which reinforces those beliefs and attitudes. For example, the aforementioned benevolent family or caretaker may harbor certain beliefs or perform certain actions in light of their view that “person X is, or will be, Y,” where person X is some disabled individual and Y is some ascription which follows tautologically as a result of a society’s views on disability and dependency — say, that person X is, or will be, overly dependent on others for their entire life. These societal views themselves are established through a plexus of cultural representations, discourses and policies. The question, then, is how societal actors ought to respond to an unethical state of affairs wherein notions of disability and dependency are described or implied through statements in contexts which themselves reinforce those notions and the practices to which they give rise. Some may seek to answer this question by addressing the philosophical consensus which holds that qualification of personhood precedes the possibility of inclusive membership in the moral community of persons, where membership entitles one to certain moral considerations and demands of them certain moral responsibilities. In order to change the state of affairs which permits these moral traumas to those who do not satisfy the membership conditions of personhood, so the logic might go, the moral prescription would be to advocate for a metaphysics of personhood which includes disabled individuals in ethical consideration. However, if the goal is to alter a given state of affairs, Dembroff argues that metaphysics is the wrong place to look; an adjusted metaphysics is neither necessary nor sufficient for the right sort of an adjusted ethics. After all, Dembroff reasons that 7. “Taking Life: Humans.” Practical Ethics, by Peter Singer, 2nd ed., Cambridge Univ. Press, 1993, pp. 175–217.

8. This is merely an acknowledgement of some social factors which play into disability, but is not intended to be an endorsement of a social constructivist model of disability.

such disagreement over what we ought to do in a particular instant might well persist even if there were a consensus position on who belongs to the categories in question. Dembroff’s “argument from unethical truths”9 is employed in service of an ethical basis for ascriptive practices, importantly distinguished from an alethic, or truth-normed basis. Rather than striving for metaphysical accuracy, Dembroff demonstrates that our categorical ascriptions should be constrained by our normative commitments to others. Regarding these normative commitments, Dembroff says that there are certain contexts in which the expression of these constitutively socially constructed states of affairs may be unethical. In these contexts, a moral duty not to express a categorical ascription arises out of (a) its unethical description or implication and (b) its unethical effects. Dembroff considers unethicality in a myriad of ways. Per their analysis, it may be unethical to express a categorical ascription if it describes or implies an unethical state of affairs, or if its expression leads to, or reinforces,10 such a state of affairs.11 They also mention how a categorical ascription, and its concomitant associations and implications, may be unethical if conferred unto someone without consent.12 Another feature of unethical constitutively socially constructed states of affairs is that the unethical meanings of their referents may persist beyond changes in usage patterns.13 Despite the laundry list of conditions for unethicality, Dembroff says that the duty-generating reasons need not be limited to an expression’s “reinforcing effect on an unjust social structure,” but may extend to “other, more direct harms.”14 Essentially, any or all of these conditions may factor into a consideration over our normative responsibilities to other people in those reinforcing contexts. In these contexts where expressing 9. Dembroff, R. (2016). Real Talk on the Metaphysics of Gender. pp 19. 10. In the case of a categorical ascription like “disabled individuals are a burden,” a reinforcing context might be in consultation with a family deciding whether or not to terminate their pregnancy. 11. Those statements which ascribe disability clearly have their reinforcing contexts. In the Iceland example, the reinforcing context may be in consultation with an expectant mother who has received a diagnosis of their child’s disability, or even in being quoted for the article cited in the first place. Anomaly’s eugenics defense concludes with a series of public policy recommendations, meaning that any engagement with his work is over its practical applicability. 12. This conception of unethicality is problematic in the case of cognitive disability, as there are cognitively disabled individuals who require moral consideration, but nevertheless will, in virtue of their disability, be unable to consent to any practice. 13. Dembroff thinks gender terms share this feature of meaning persistence. We may, for instance, change the whom to which we ascribe woman,’ without changing that which the term connotes. As such, our categorical ascriptions may be immoral to the extent that the metaphysical assumptions constitutive of gender category constructions are unethical in their own right. Attempts of the disability pride movement to reclaim terms like ‘crip,’ are instructive in showing how disability might function similarly. 14. Dembroff, R. (2016). Real Talk on the Metaphysics of Gender. pp 22.

a proposition would be unethical, Dembroff would say we have a duty to not express the proposition. Additionally, insofar as the effects of our categorical ascriptions are themselves socially constructed, then it is society’s duty to deconstruct the resultant unethical state of affairs. In other words, Dembroff contends that were it unethical to ascribe, say, burdenhood, to disabled individuals, then the best practice in any context would be to express the proposition “disabled individuals are independent,” even if that claim were not true. Expressing the false correlate of a true, but unethical, statement may, over time, shift the reference of key terms and thereby alter the unethical constitutively socially constructed state of affairs. On their analysis, this moral reason to express the false correlate of some true ascription is over and above any obligation one might have to speak the truth. Still, a stronger argument could be made for their thesis if Dembroff said more about why the class of propositional statements they take up are unethical, as well as how this unethicality determines the moral prescription to express an ethical falsehood. The following is one applicative concern and one fundamental one with Dembroff’s view. Applicatively, there may be constitutively socially constructed states of affairs whose expressions are classified erroneously by Dembroff’s accounting. Consider the case of a caregiver expressing the proposition that “X is dependent,” where X is a severely cognitively disabled individual. Dembroff’s view may classify the ascription as unethical insofar as it (a) describes the individual as undeserving of certain rights and responsibilities, or deserving of certain paranoias and stigmatizations, and (b) may lead to harmful effects for that person. But the expression still performs a useful and accurate ascription by selecting out the individual as the type of person to whom the term “dependent” is meant to select out, and to whom beneficial considerations, resources, and moral appeals are warranted. Expressing its false correlate would only be more pragmatically and morally problematic. Without more from Dembroff, it is unclear why the speech act in question ought to generate the moral responsibility to express its false correlate despite it satisfying their criteria. This problem also casts

into relief the worry that Dembroff’s project doesn’t go far enough; speech acts are, perhaps, a necessary but insufficient step toward the types of change demanded by unethical constitutively socially constructed states of affairs. One might also offer a more fundamental rebuttal to Dembroff’s account. Since Dembroff says that metaphysics is the wrong place to resolve disagreement, one might say that their argument might just as well be wielded in service of an attempt to bring public consensus regarding normative commitments, as well as the whom to which those commitments are properly directed, in lockstep with those metaphysical facts. Dembroff’s view leaves us in a good place by grounding the statements which constitute our beliefs and practices regarding disability and dependency in our moral consideration. Without a more substantive ethics to support Dembroff’s view, however, our correct ascriptions are subject to the whims of a particular society, or the contingencies of any moral or political movement. This is particularly true in the case of cognitive disability, where the consent of those severely cognitively disabled ought not be a determinant factor in our moral consideration, thereby leaving us with one less desideratum of determining unethicality. What is required, then, is an ethics to move toward, and in the service of which action is required. In “Dependency,” the philosopher Eva Kittay offers just that. She centers our normative commitments around the nexus of interdependency, which she envisages as the source of “needed care, knowledge, culture, technology, and political, social and economic goods.”15 She also implicates society in ameliorating the negative circumstances facing those living with disability by saying that any decent society must accept the responsibility to meet the needs of those who find themselves inevitably dependent. Kittay tracks a societal preference for independent living as partially the cause of these negative circumstances. This preference even permeated the desired aims of the early wave of the disability rights movement, which Kittay criticizes for attempting to shift the understanding of indepen 15. Kittay, E.F. (2015). Dependency. Keywords for Disability Studies, pp 1.

dence as self-sufficiency to one of independence as self-determination. Those scholars and activists of the movement “rejected the notion of dependence as inherent in disability,” preferring instead to redefine independence as including “the vast networks of assistance and provision that make modern life possible.”16 Kittay rightly points out that, by centering independent living as an aspiration and tying productivity to any argument for the worth of disabled lives, the early disability movement perpetuated the damaging societal preference for independence and independent living. Consequently, the movement reinterpreted the established metaphysical truth that “persons are independent” to include certain disabled people, thereby maintaining and reinforcing that same societal preference for independent living. As a result of the movement and the reinforced normativity of independence, so many within decent societies continue to refuse to acknowledge their inevitable dependency, instead considering independence as a sufficient condition to proper personhood. People who are not independent, or whose capacities exclude them from ever reaching independent status in a given society, are therefore “thought to have a moral or psychological flaw.”17 Similarly, those who have the relevant moral or psychological flaws might be considered dependent, or not capable of independence. Kittay sources this refusal to recognize inevitable human dependency in her diagnosis of how the experience of disability “as a particular kind of social problem”18 has shaped the lived conditions of disabled individuals. In this way, attempts to deconstruct dependency by reducing it to a social construction are oppressive. They disadvantage and culturally ostracize those disabled people “who do indeed require looking after”19 and “whose ability to be self-determining requires increased, not reduced expenditures,”20 such as the severely cognitively or physically disabled. In this way, the more able still gain a material advantage. Kittay’s insights force us to think about dependency in a different, more universalistic, way. She wants to consider how the benefits procured by those scholars and activists of the early disability rights movement — namely, that 17. Kittay, E.F. (2015). Dependency. Keywords for Disability Studies, pp 5. 17. Kittay, E.F. (2015). Dependency. Keywords for Disability Studies, pp 2. 18. Kittay, E.F. (2015). Dependency. Keywords for Disability Studies, pp 1. 19. Kittay, E.F. (2015). Dependency. Keywords for Disability Studies, pp 6. 20. Kittay, E.F. (2015). Dependency. Keywords for Disability Studies, pp 7.

some of the harms resulting from a lack of material resources and care can be deconstructed by way of appropriate accommodations, personal assistants, and other such material changes — might be protected without reinforcing the stigmatization of those excluded by the focus on independent living. She inquires as to how society might accept the inevitability of dependence while also regarding the negative effects of socially constructed dependency as the proper object of concern, accountability and change. Kittay’s first step is to punt on the “quixotic quest”21 for independence in order that we may recognize and embrace our own inevitable dependency on others. All types of dependency, while not always palatable for some, are “part of a normal human life lived intertwined with others.”22 Even relative independence occurs at the expense of someone — such is the pervasiveness of our dependency. The paradigm case of this is that of the caregiver who, in meeting the needs of the proper object of their care, becomes derivatively dependent. Rather than being considered an agent engaging in a relationship of reciprocity, they are considered merely a proxy for the recipient of their care; they become responsible for the subject of their care to the extent that their own agency is rendered invisible. This helps make sense of why Kittay conditions the recognition of our fundamental interdependency, which determines the social lives of all individuals in society, save for those unable to meet the needs of others, on the recognition and embracement of our dependency. For Kittay, the inevitable need which all humans experience in their lives “becomes the site of cultural identity, family warmth, artistic creation and sociality.”23 By embracing our dependency, and reveling in our concomitant interdependency, we may “demand a reordering of priorities and an assertion of entitlements that are our due, not because we can be independent and productive, but because our value derives from the chain of dependent relations that make all our lives possible.”24 The logic of care ethics grounds both our individual value and collective normative commitments in our essential dependency on others. It therefore rejects outright the appeal to health from Stef21. Kittay, E.F. (2015). Dependency. Keywords for Disability Studies, pp 8. 22. Kittay, E.F. (2015). Dependency. Keywords for Disability Studies, pp 4. 23. Kittay, E.F. (2015). Dependency. Keywords for Disability Studies, pp 2. 24. Kittay, E.F. (2015). Dependency. Keywords for Disability Studies, pp 9.

Illustration by Nandita Venkataraman

fanson, to valuable human traits from Anomaly, and to opportunity cost from the well-meaning parent. Statements such as theirs, as well as the beliefs and practices they are intended to support, fall within the purview of societal responsibility implicated by both Dembroff and Kittay. However, Kittay takes us farther than Dembroff. Dembroff offers insightful analysis into how our beliefs and practices consist in our speech acts and categorical ascriptions. They also establish that it is our collective societal responsibility to change the justificatory ascriptions which reinforce a constitutively socially constructed unethical state of affairs. Nevertheless, Dembroff offers a problematic solution to the problem. In addition to the previously discussed problems with Dembroff’s view, Kittay helps us see how merely uttering the false correlate of the unethical statement “disabled people are dependent,” might reinforce a still problematic societal preference for indepen-

dence. Kittay offers us a better prescription to the moral landscape which Dembroff helps us see clearer. For Kittay, the affairs which we’ve constructed, and which the content of our statements threaten to reinforce, actually conceal the social benefits that lead from recognizing our inevitable dependency. On her analysis, the lives of disabled individuals serve as a paradigmatic example of the inevitability of human dependency, as well as the robust and normative relationship between caregiver and recipient. As such, disabled lives aren’t merely valuable because they belong to the community of persons, but because their existence as such elucidates important normative standards for ethical consideration. The statements which express or describe a state of affairs that demeans or disregards the existence of disabled individuals therefore conceals this good-making feature of the lives of disabled individuals. Statements such as those of Steffanson, Anomaly, and Olafsdottir reify the view that disabled individuals’ lives are relevantly different from those of non-disabled individuals, while preventing people from recognizing their capacity, and even their responsibility, to change the social structures and belief systems which fail to properly regard disability in the first place. We have a moral duty not to express such statements, or, where appropriate, to express their false correlates. Still, there’s a clear sense in which this moral demand doesn’t go far enough, for doing so might only recapitulate the errors of the early disability rights movement. What’s required, instead, is the reification in policy, law and culture of an ethics which centers dependency over independency. This broad-based reificiation would be instrumental toward deconstructing the unethical state of affairs faced by individuals with disabilities and those who care for them. It also does not impose on any right held by individuals or families, the most notable of which would be the right for those parties to conclude that it is in their best interest to abort a disabled fetus, or to genetically engineer individuals able to accomplish independent living. Instead, it offers a robust reason to subvert the systems and beliefs which would inform the decision to do so in the first place, and to create a better world for all regardless of capacity.

References Anomaly, Jonathan. 2018. “Defending Eugenics.”Monash Bioethics Review 35, no.1-4 (July): 24-35. Barnes, Elizabeth. 2016. The Minority Body. Oxford University Press. Dembroff, Robin. 2019. Real Talk on the Metaphysics of Gender. Philosophical Topics. Forthcoming. Kittay, Eva F. 2015. “Dependency.” Keywords for Disability Studies. Forthcoming. Lajka, Julian Quinones Arijeta. “”What Kind of Society Do You Want to Live in?”: Inside the Country Where Down Syndrome Is Disappearing.” CBS News, CBS Interactive, 14 Aug. 2017. www.cbsnews.com/news/down-syndrome-iceland/. Singer, Peter. 1993. “Taking Life: Humans.” Practical Ethics. Cambridge University Press. 2nd ed: 175–217.

The Role of States such as Virginia’s Consent and Confidentiality Laws in Limiting African American Female Adolescents’ Access to Reproductive Health Care By: Christina Ross Odela D.Cascells Fellow at the Maxine Platzer Lynn Women’s Center

Introduction Introduction Sexually transmitted diseases (STDs) are affecting youth at an alarming rate, especially youth of color. In 2014, youth aged 13-24 with new HIV diagnoses included(777) Black females, (218) White females, and (203) Hispanic females (CDC, 2016). Additionally, despite the downward trend in teenage pregnancies, Black and Hispanic teens make up 57% of teen birth rates in America, the highest among all ethnicities (CDC, 2016). In an attempt to address the sexual health disparities that are prevalent among African American adolescents, many federally funded interventions have been recently established. Interventions often focus on promoting the use of contraceptive methods such as long-acting reversible contraceptives (LARC), furthering community involvement (leaders and families), and improving health clinics (Wiltz, 2015; CDC, 2016). In addition to federally mandated changes, African American adolescents’ parents and caregivers are effectively communicating with their children about safe sexual practices and methods for the reduction of risky behaviors that lead to teenage pregnancy and STDs(Aronowitz, Todd, Agbeshie, Rennells, 2007). Conversely, parents and caregivers often lack adequate resources to communicate effectively with their adolescents; therefore, parents and caregivers turn to health care providers for educational assistance (Aronowitz, Rennells, & Todd, 2006; Aronowitz,Todd, Agbeshie, & Rennells, 2007; Aronowitz & Agbeshie, 2012).

Some parental strategies, myths or religious, cultural, and ethnic beliefs can leave adolescents uncomfortable talking to their parents and caregivers, and in need of more information regarding sexual education. As a result, adolescents will seek the professional advice of health care providers to provide additional sexual health education and care. Despite numerous federally funded interventions, as well as community and family involvement, a gap in knowledge remains regarding potential factors that contribute to African American adolescents being markedly affected by STDs and teenage pregnancies in comparison to other ethnicities. As a result, the objective of this paper is to analyze the potential factors that limit adolescentsâ&#x20AC;&#x2122; access to sexual and reproductive health care. In states such as Virginia, minority youth are disproportionately impacted by consent and confidentiality laws, which have the potential to deter adolescents from seeking professional advice and can leave some adolescents at a disadvantage or at greater risk for being victims of STDs and teenage pregnancies. Therefore, this paper illustrates the need for health care providers to provide supplemental care and education to African American adolescents, and will also demonstrate how minor consent and confidentiality laws in states such as Virginia can serve as a hindrance, preventing adolescents from accessing care due to the risk of potential parental involvement, notification, and conflict.

Parents/Caregivers Role in Adolescents Sexual Health Education Strategies/Methods: African American parents and caregivers

implemented various strategies to communicate with their adolescents about sexual health practices. Strategies that were effective included the following: Limit Setting. Parents often inform adolescents of various limits or expectations that are expected of them. Parents reported setting limits regarding when their children can start dating and engaging in social activities with the opposite sex (Aronowitz, & Eche, 2013). Adolescents agreed that limit setting was an effective parenting strategy that influenced their behavior regarding sex. Instilling Values. Parents instilled values in their children by showing them love and support, which fostered positive open communication and enabled them to help their children set goals regarding finishing school and avoid making the same mistakes they had made during their own youth (Aronowitz, & Eche (2013). Adolescents were favorable of this strategy as it helped them to focus on having a better future in comparison to what their caregiver had experienced, and were deterred from being involved in negative sexual health behaviors (Aronowitz, & Eche 2013). Authoritative Parenting Style. African American parents often implemented authoritative parenting styles to encourage their childrenâ&#x20AC;&#x2122;s compliance. Authoritative parenting was suitable for their children because it helped to meet the needs of the child based on the location or context they resided in, and served as protective measures when dealing with authority or factors such as negative racial experiences (Lecuyer, Swanson, Cole & Kitzman, 2011). While the previously mentioned strategies were

effective, adolescents reported a number of strategies that were ineffective, including the following: Monitoring. Some parents implemented the strategy of monitoring their children’s actions at home and in the community, often having other community members monitoring their children to ensure adolescents were not engaging in risky behaviors (Aronowitz, Rennells, & Todd, 2006). While monitoring served as a method for deterring adolescent participation in risky behaviors, adolescents were disappointed with this parental strategy and preferred to have a strong bonding relationship with their caregivers, which would make it easy to communicate directly to their caregivers about sex (Aronowitz, Rennells, & Todd, 2006). Scare Tactics. Some parents implemented more intense strategies such as scare tactics to influence their children’s behavior, such as telling them they will die if they do not wear condoms/engaged in certain activities (Aronowitz, & Eche, 2013). Adolescents did not favor the “scared straight” method, reporting that it hindered their ability to effectively communicate with their parents; they labeled the strategy as the worst method a parent can use (Aronowitz, & Eche, 2013).

will obtain the desired information from other sources (Jaccard & Dittus, 2000). Additionally, information from other sources might be inaccurate and pose more harm to adolescents. Therefore, it is more beneficial for parents and health care providers to communicate with their adolescents regarding safe sexual health practice, as they will be equipped with the adequate information when they are ready to explore sexual activities. However, adolecents and mothers are often uncomfortable talking talking about sex because of its “taboo” nature, resulting in adolescents being told not to engage in sex, and parents lacking sufficient knowledge to engage in the conversation (Aronowitz, Rennells, & Todd, 2006; Aronowitz,Todd, Agbeshie, & Rennells, 2007; Aronowitz & Agbeshie, 2012). Therefore, adolescents often turn to health care providers for additional information and care regarding sexual health.

Virginia Minor Laws and its Effects on African American Adolescents In the United States, adolescents reach the age of majority at 18 years and have adult rights and status, which means parents and legal guardians are no longer legally responsible and in control of the adolescent (“Teens Learn & Live the Law

Myths Regarding Communication About Sexual Education. Parents are often afraid and hesitant in talking to their children about sexual health due to the possibility that it will lead to increased curiosity, increasing the potential for adolescents to initiate sexual encounters (Aronowitz, Rennells, & Todd, 2006; Aronowitz,Todd, Agbeshie, & Rennells, 2007). While some myths can prove true, it is important that health professionals help address many fears and concerns parents have. It is possible for some adolescents to engage in sexual activity after talking to their parents about sex and receiving their mothers’ approval of birth control (Jaccard & Dittus, 2000). However, choosing not to educate adolescents about sex and contraceptives does not guarantee abstinence or extended delay in the initiation of sexual activity. Notably, regardless of the parents’ decision to talk to adolescents regarding sex and contraceptives, adolescents

13 Illustration by Nandita Venkataraman

| Virginia RULES”, n.d.). In terms of sexual and reproductive health, minors are considered adults and can fully consent for medical or health services such as birth control, pregnancy, and family planning (with the exception of sexual sterilization) (The Center For Ethical Practice, 2010). Adolescents 14 and older who consented to their care can access their medical records, and unless there is a risk of harm to the minor, parents and legal caregivers can access their minor’s health records (The Center For Ethical Practice, 2010). The University of Virginia Teen Health Center provides sexual and reproductive health care to adolescents around the Charlottesville area. In terms of minor consent, privacy and confidentiality laws, the center has seen the effects of the laws on its adolescent population. In an interview with the Director of the University of Virginia Teen Health Center, it was mentioned that confidentiality regarding care obtained from the teen center served as a barrier and a concern for many adolescents. Under Virginia law, an adolescent under the age of 18 can give consent for family planning, venereal disease diagnosis and treatment, pregnancy care, outpatient mental health, and substance abuse care (Aretakis, 2015). However, the law does not allow the information allow the information to be confidential, meaning that parents can request and access the health records. Parents who contact the teen center for their child’s records will be forwarded to the Medical Records Department, who will charge $2.50 per page (Aretakis, 2015). The cost associated with obtaining the patient’s record sometimes serves as a deterrent; however, it does not prevent parents from accessing the records if they wanted to. The teen center offers counseling sessions to help adolescents discuss important issues with their parents or caregivers, especially when they find it difficult to engage in a dialogue with their parents (Aretakis, 2015). Counseling sessions can help the teen center to retain its patients; adolescents learn how to communicate with their parents about their sexual health education choices, instead of the teens leaving due to confidentiality concerns. Minor laws can limit adolescents’ access to care because confidentiality, privacy, and anonymity are very important factors that influence adolescents’ information seeking behaviors

(Smith & Stepanov, 2014). In a study of adolescents, it was found that confidentiality was the “most important quality of a sexual health service, evaluated higher than friendliness of staff” (Smith & Stepanov, pp. 44, 2014). Therefore, confidentiality is one of adolescents’ highest priorities and will ultimately determine if they will seek health care or delay it due to fears of their parents finding out. Another potential impact of adolescent consent and confidentiality laws is the risk for parental conflict. Some African American parents do not want to talk to their children about sex because it is seen as “taboo” in nature or off limits, fearing that conversations about sex will result in sexual activity initiation (Aronowitz, Rennells, & Todd, 2006; Aronowitz,Todd, Agbeshie, & Rennells, 2007; Aronowitz & Agbeshie, 2012). Additionally, some parents may have strong abstinence and religious beliefs, which can potentially lead them to condemn their adolescents’ need for sexual and reproductive health education, disapproving of the use of health care providers to get such information. As a result, adolescents who exercise their right to access care can place themselves at risk for parental/caregiver conflict if their parents were to find out by opening the adolescent’s mail or calling the health care facilities to check if their adolescent has any medical records. Current consent laws do make provisions for minor confidentiality if it was determined that the patient would be at risk for harm if medical information was shared (The Center For Ethical Practice, 2010). However, harm could be subjective, where the adolescent may view their parents disapproval and reaction as harmful psychologically/emotionally even though it may not be considered harmful legally. As a result, there are limited grounds by which adolescents’ medical records could not be shared with their parents. Additionally, it could be a psychological stressor to know that at any point a parent or caregiver can obtain information regarding their sexual and reproductive health care. Therefore, it is beneficial for adolescents to legally be able to obtain sexual health care and education independently, meaning that the law needs to be revised and updated to protect adolescents’ health records from being shared without their consent.

African American Parents Lack of Trust in Health Care Providers Updated adolescents’ confidentiality laws and policies regarding sexual health care can potentially leave parents feeling disappointed and disconnected from being involved in their adolescents’ health and life. Parents may also feel unable to support their adolescents if they are unaware of what is going on. Also, historical trauma faced by African Americans led many of them to lose trust in White providers, and this lack of trust persists today (Andrulis, 2003; Clark, 2009). Historical trauma such as eugenics, coercive family planning, and non-consensual sterilization practices on mentally ill, poor, minority or immigrant women continues to shape African American women’s views on contraception and family planning services today (Dehlendorf, Rodriguez, Levy, Borrero, & Steinauer, 2010). Some African American women are skeptical about sexual and reproductive health care, andbelieve that services such as contraceptive are the government’s initiative to promote sexual sterilization and control the ethnic minority population (Dehlendorf, Rodriguez, Levy, Borrero, & Steinauer, 2010; Rocca & Harper, 2012). As a result of historical trauma African Americans experienced with health care providers in the past, female African American patients lack trust in the healthcare system when it comes to contraceptive methods, primarily due to myths and factual information passed on from prior generations (Dehlendorf, Rodriguez, Levy, Borrero, & Steinauer, 2010). This mistrust in health care providers can, therefore, be passed on to adolescents as parents try to deter adolescents from seeking sexual health care due to the risk of harm based on historical unethical healthcare practices. Parents, as a result, can have a difficult time allowing their adolescent to seek completely confidential care from health care providers. Therefore, it is important for parents and healthcare providers to have trusting relationships and know that both parents and the health care provider are working to promote the optimal health of the adolescent. Additionally, adolescents should be allowed to

exercise their autonomous rights, and seek sexual health care services, as they deem necessary Health care providers are obligated to provide the best care to their patients; therefore, adolescents are in “good hands” and will be guided accordingly to make informed sexual health choices. Also, there are no critical implications or justifications as to why parents should be able to access their adolescents’ health care records, when adolescents have been deemed competent to consent to sexual health care without their parents’ approval. Lack of total confidentiality creates dissonance and mistrust between adolescents and their health care providers, placing adolescents at greater risk for adverse sexual health behaviors.

The Role of Health Care Providers In addition to parents who are legally obligated to provide the best level of care to their adolescents, health care providers are experts in their fields and can be trusted to provide honest, informative advice to adolescents (GormleyFleming & Campbell , 2011). Health care providers are educated and obligated to follow evidencedbased care when working with their patients, in addition to offering referrals to other available services and resources. As a result, adolescents often implore the use of health care providers in hospitals, schools, and other facilities for sexual and reproductive health services. Adolescents have keen interest in their sexual health, and will seek information regarding fertility, contraceptives, and sexually transmitted diseases from health care providers, whom they can trust and confide in to provide them with the best level of care and service (Smith & Stepanov, 2014). Adolescents often turn to health care providers due to difficulties interacting with their parents or being unable to get the information they seek. Some adolescents reported being unable to talk to their parents about sex-related issues due to their parents’ cultural, ethical and ethnic values/ beliefs (Smith & Stepanov, 2014). Health care providers work under various laws and policies to guide their practice, however, laws and policies related to adolescents can serve as barriers to access for care due to confidentiality, consent, and privacy issues adolescents have to deal with. Additionally, adolescents reported that

they will stop visiting their provider if their information was shared with their parents, and they would continue to engage in risky behaviors (Smith & Stepanov, 2014). Therefore, adolescents value being in control of their sexual health, however, lack of confidentiality can lead adolescents to lose that value. It is also counterintuitive for adolescents who are uncomfortable talking to their parents about sexual health to talk to their health care providers, especially if the information in the patient’s medical records can be shared with the adolescents’ parents or caregivers, which is what the adolescent is trying to avoid. As a result adolescents can have no motivation to share confidential information with health care providers because they are at risk for their parents finding out. , In order for health care providers to hold on to the important role of caring for adolescents, the provider should always be honest and open with the patient to build a long-lasting relationship. The provider should let the adolescent know that they are aware of potential worries and concerns regarding adolescent confidentiality laws, that they are always there to provide support, and will advocate for them. Additionally, health care providers can provide interventions to help adolescents talk to their parents or caregivers about their sexual health, which would serve as a tool for adolescents when they are ready to have the discussion with their parents. In addition to the interventions described above, health care providers can help protect the rights of the patient and make them feel comfortable in their care by being careful with sending/mailing correspondences to the adolescents’ home, which could potentially be seen by their parents and create conflict between the adolescent and their parent or caregiver (Maradiegue, 2003). Also, health care providers can inform adolescents that while the law enables their parents and caregivers to have access to their medical records, confidentiality is otherwise strictly maintained by them (“Tips for Health Care Providers: Helping Teens and Parents with Sexual Health Needs”, n.d.). Health care providers should also talk to parents who visit them about the importance of confidentiality to adolescents, and

how parents and caregivers can work on having open discussions with their adolescents regarding sexual health, their rights to seek care, and the importance of adolescents’ rights to confidentiality (“Tips for Health Care Providers: Helping Teens and Parents with Sexual Health Needs”, n.d.). It is possible for adolescents to continue visiting their health care provider despite the risk of their parents or caregivers obtaining their medical records; health care providers need to build a longlasting and trusting relationship with the adolescent who can, in turn, view them as aas a valuable support system.

Proposed Amendment to Virginia’s Current Minor Laws Adolescents should continue to get consented sexual and reproductive health care, but in addition, adolescents should be able to have full access to their health records, while parents and caregivers can gain access with prior proven authorization from the adolescent. Legal parents/caregivers/guardians can have the option to petition the court for such access if the health records are deemed absolutely essential and lack of access serves as a hindrance to the legal obligatory care the parent must provide to the adolescent. If a parent or caregiver should petition the court for access, the adolescent’s health care provider should be in agreement with the parent and provide justifications as to why it is vital for the parent/ caregiver to have such information before the court can grant access to the parent/caregiver/ guardian. Also, the adolescent should have the option to respond to the petition and give their opinion if they so desire.

Conclusion African American adolescents are markedly affected by STDs and teenage pregnancies in comparison to their White counterparts. Numerous barriers limit African American adolescents from accessing the sexual and reproductive health care they need. African American adolescents’ parents and caregivers serve as effective educators for sexual health education and promotion of safe sexual health practices among their children. However, some

parents are limited in the amount of education they can provide due to limited available resources to facilitate teaching. Also, many parents and caregivers are uncomfortable talking to adolescents about sexual education due to fear regarding early sex initiation, in addition to religious, cultural, and ethnic reasons. As a result, many adolescents seek information from health care providers to avoid potential conflict with their parents and caregivers. Adolescents are faced with barriers such as Virginia’s minor confidentiality laws that enable parents and caregivers to gain access to their child’s medical records. The ability for adolescents to consent to sexual and reproductive health care in Virginia is a benefit, as adolescents can get honest, informative care that can guide them in making positive sexual health choices. Lack of confidentiality by allowing parents to access their medical records could deter adolescents from seeking health care and as a result, potentially lead them to engage in risky sexual behaviors that place them at risk of developing STDs and unplanned pregnancies. It is important for adolescents to be able to receive confidential care in order to promote preventative gynecological care and patient retention for future sexual and reproductive health care (Valvano, 2009). Since health care providers can be trusted to provide the best care, support and guidance for adolescents regarding sexual and reproductive health, adolescents should be able to be in control of whether or not their parents or caregivers can access their health records. Laws have authorized adolescents to consent to sexual and reproductive healthcare; confidentiality cannot be divorced from this care because it’s part of the whole healthcare scheme. Confidentiality and consent go together for healthcare to be effective. Parents should ultimately allow their children to have their rights and confidentiality respected in order for them to continue receiving the health care they need. Additionally, parents should seek the help of health care providers in learning how to facilitate a conversation about sexual health education with their adolescents. By having the necessary tools to have an effective communication, adolescents can feel more comfortable sharing confidential information with the parent or caregiver. Additionally, adolescents

should be a part of a support system at home, in the community, and with health care providers to enable them to feel empowered and educated to make positive sexual health choices. Therefore, it is important for parents/caregivers, educators, community leaders, and health care providers to meet and come up with interventions to help African American adolescents combat the elevated STD and teenage pregnancy rates. Emphasis should be placed on identifying and addressing various racial and structural barriers that are in place, especially those that markedly affect African American adolescents. Finally, Virginia’s minor confidentiality laws need to be changed. Adolescents are able to consent to various sexual health care, therefore they should be able to control whether or not their parent’s or caregiver can access their records. As mentioned in this paper, adolescents would stop visiting the healthcare provider or delay initiation of their visit due to current confidentiality laws. Adolescent avoidance of seeking sexual and reproductive health care due to confidentiality laws can lead to continued increased rates of STDs and teenage pregnancies among African American adolescents, primarily because they can engage in high-risk behaviors without adequate health care and guidan safe, effective, and confidential care where they control their parent’s access to their records in order for them to continue seeing their health care providers and receiving the necessary care and education.

References Aretakis, Diane. 2015. Nurse Managed Health Center: Past and Present. University of Virginia Teen Health Center. Aronowitz, Teri, and Ethel Agbeshie. 2012. “Nature Of Communication: Voices Of 11–14 Year Old African-American Girls And Their Mothers In Regard To Talking About Sex”. Issues In Comprehensive Pediatric Nursing 35 (2): 75-89. doi: 10.3109/01460862.2012.678260. Aronowitz, Teri, and Ijeoma Eche. 2013. “Parenting Strategies African American Mothers Employ To Decrease Sexual Risk Behaviors In Their Early Adolescent Daughters”. Public Health Nursing 30(4): 279-287. doi:10.1111/phn.12027.

18 Illustration by Nandita Venkataraman

Aronowitz, Teri, Rachel E. Rennells, and Erin Todd. 2006. “Ecological Influences Of Sexuality On Early Adolescent African American Females”. Journal Of Community Health Nursing23 (2): pp113-122. doi:10.1207/s15327655jchn2302_4. Aronowitz, Teri, Erin Todd, Ethel Agbeshie, and Rachel E. Rennells. 2007. “Attitudes That Affect The Ability Of African American Preadolescent Girls And Their Mothers To Talk Openly About Sex”. Issues In Mental Health Nursing 28 (1): 7-20. doi:10.1080/01612840600996158. CDC Features - Teen Birth Rates Drop, But Disparities Persist. 2016. Cdc.gov. Retrieved 11 April 2016, from http://www.cdc.gov/ teenpregnancy/prevent-teen-pregnancy/socialdeterminants-disparities -teen-pregnancy.htm Code of Ethics for Nurses. 2015. Nursingworld. org. Retrieved 11 December 2018, from http:// www.nursingworld.org/codeofethics Dehlendorf, Christine, Maria Isabel Rodriguez, Kira Levy, Sonya Borrero, and Jody Steinauer. 2010. “Disparities In Family Planning”. American Journal Of Obstetrics And Gynecology 202 (3): 214-220. doi:10.1016/j.ajog.2009.08.022. Gormley-Fleming, Liz, and Anne Campbell. 2011. “Factors Involved In Young People’S Decisions About Their Health Care”. Nursing Children And Young People 23 (9): 19-22. doi:10.7748/ ncyp2011.11.23.9.19.c8791.

J Jaccard, P J Dittus. 2018. “Adolescent Perceptions Of Maternal Approval Of Birth Control And Sexual Risk Behavior.”. Pubmed Central (PMC). https://www.ncbi.nlm.nih.gov/ pmc/articles/PMC1447630/. Maradiegue, Ann. (2003). Minor’s Rights Versus Parental Rights: Review of Legal Issues. Medscape. Retrieved 08 December 2016, from http://www.medscape.com/ viewarticle/456472_8

And Reproductive Health Care For Adolescents”. Clinical Pediatric Emergency Medicine 10 (1): 60-65. doi:10.1016/j.cpem.2009.01.004. Wiltz, Teresa. 2015. Racial and Ethnic Disparities Persist in Teen Pregnancy Rates. Pewtrusts. org. Retrieved 15 April 2016, from http://www. pewtrusts.org/en/research-and-analysis/blogs/ stateline/2015/3/03/racial-and-ethnic-disparitiespersist-in-teen-pregnancy-rates

Rocca, Corinne H., and Cynthia C. Harper. 2012. “Do Racial And Ethnic Differences In Contraceptive Attitudes And Knowledge Explain Disparities In Method Use?”. Perspectives On Sexual And Reproductive Health 44 (3): 150-158. doi:10.1363/4415012. Smith, Malcolm K., and Nikola Stepanov. 2014. “School-Based Youth Health Nurses And Adolescent DecisionMaking Concerning Reproductive And Sexual Health Advice: How Can The Law Guide Healthcare Practitioners In This Context?”. Contemporary Nurse, 4189-4207. doi:10.5172/ conu.2013.4189. Teens Learn & Live the Law | Virginia RULES. Virginiarules.com. Retrieved 2 May 2016, from http://www.virginiarules.com/virginia-rules/ family-relationships-and-the-law The Center For Ethical Practice | VIRGINIA MINORS’ LEGAL RIGHTS: RIGHT TO CONSENT TO TREATMENT; ACCESS TO & DISCLOSURE OF CONFIDENTIAL RECORDS OF OUTPATIENT TREATMENT. (2010). Centerforethicalpractice. org. Retrieved 1 May 2016, from http:// www.centerforethicalpractice.org/ethicallegal-resources/virginia-legal-information/ legal-opinions-rights-virginia-minors/ virginia-minors-legal-rights-right-to-consent-totreatment-access-to-disclosure-of-confidentialrecords-of-outpatient-treatment/ Tips for Health Care Providers: Helping Teens and Parents with Sexual Health Needs. Advocatesforyouth.org. Retrieved 5 May 2016, from http://www.advocatesforyouth.org/ parents/144?task=view Valvano, Thomas J. 2009. “Legal Issues In Sexual

“Ain’t I Human?”

The Role of Bias and Erasure in the Medical Subjugation of African/Black American Patients, A Personal Narrative By Mya Singleton University of Virginia

My nine month ordeal with multiple

primary care physicians leading up to my Hypomelanosis of Ito diagnosis exemplifies the legal perpetuation of implicit bias, unregulated exploitation, and experimentation on people of color within our medical system, particularly Black Americans. By extrapolating key experiences from my illness narrative, I hope to form direct correlations between medical implicit bias (specifically the idea of “othering”), ethnic erasure, and human-based experimentation on those with rare conditions that are fairly unknown to “western medicine” I also argue that the underlying force within the medical system allowing such structural

violence to continue draws. from how medicine has historically determined what constitutes a “human” and the degree to which “non-humans” (the “other” group) can be exploited in the name of progressive medicine. The use of African/Black Americans for medical experimentation reached its peak during the colonial slave era in the United States and has continued to proliferate throughout our modern medical and healthcare system. According to Harriet A. Washington, the “racial health gulf” that exists between the medical treatment

of Black Americans and other racial populations not only insinuates that the knowledge concerning the health of Blacks is based on biological dimorphisms (the perception that external and internal differences are caused by genetic inheritance) but also neglects the “history of ethically flawed medical experimentation” on African Americans. [1] The social condition that colored slaves were, in one way or another, inferior (and therefore subhuman) has lead to a series of experiments designed to support a biological basis for the structural violence that socially undermined the Black American community.

Medical physicians experimented on

blacks in an effort to understand the human body and how it functioned. I was born with a rare skin condition called Hypomelanosis of Ito. My skin was covered from head-to-toe with various swirls and stripes of various shades of brown. Some portions of my skin were completely white while others were near-black. No one in the hospital unit had ever seen skin like mine. The doctors and nurses on call immediately placed me in the Intensive Care Unit as my skin was thought to be a result of me being born premature. I was placed in an incubation unit and given purified air through a breathing tube. I remained in the Intensive Care Unit for approximately a week as the doctors continued to both run tests on my skin and monitor my lung capacity due to my asthma. This week quickly progressed into a nine month long “quest” to determine what was wrong with my skin. I was assigned to at least three primary (pediatric) care physicians who were concerned about my skin. I was subjected to even more tests to rule out common skin conditions seen amongst the American population (most particularly the African American population) such as eczema and vitiligo. I was prescribed a

slew of medicinal creams and powders to strengthen my epithelial cells and immune system. I had doctor appointments every week, and, because I was not allowed to go outside uncovered, getting ready for appointments was nothing short of a time consuming nightmare. All my doctors wanted to start me on a special diet and discussed with my mother the possibility of placing me in a special education program (as they believed my mysterious condition along with the fact that I was born premature was affecting my nerve and brain development). In retrospect, there was nothing medically

“I had doctor appointments every week, and, because I was not allowed to go outside uncovered, getting ready for appointments was nothing short of a time consuming nightmare.” life-threatening about my skin condition nor did my condition delay my development in any way, shape, or form. Therefore, my skin was not a source of concern but a source of wonder. My skin condition resided beyond the span of medical knowledge of the three primary care physicians I was exposed to in my first nine months of life. Hypomelanosis, though “rare,” is not unknown to the medical community; it was, however, highly studied within eastern (particularly Japanese) medicine. The overwhelming response of the three primary care physicians to my skin is an example of “othering” exemplified in Van Loon’s 1928 medical report of the “amuk” (or insanity)

that manifests amongst the Malay population and other “primitive” races (including Blacks). According to Van Loon, medicine should “seek [evidence] not in normal but in abnormal behaviours” and conditions.[2] This notion continues in our modern medical system in that the need to pathologize (group and categorize) bodies in such a way is another part of medical implicit bias. The primary care physicians that were “treating” my skin were only considering the skin conditions that were considered to be common for people of color (particularly African Americans/ Blacks) without considering the possibility that my skin condition existed beyond their medical expertise. The physicians conducted a multitude of unnecessary tests before my final physician diagnosed me with Hypomelanosis of Ito by a simple visual examination.

One major portion of my illness narrative

that I believe most embodies the idea of “othering” and ethnic erasure is the perception of pain in my nine months of intensive medical care as told from the perspective of my mother. My mother remembers being restless for hours in the hospital, watching every single needle get inserted beneath my skin and wincing every time a skin scrape test gave me any type of discomfort. After my release from the hospital, I had a Personal Care Nurse for three to four months who came and monitored my “progress” every week. She would bring with her any new cream or medicine the doctors wanted me to try as well as track any changes in my skin or breathing. The application of some of these medications resulted in additional tests in order to monitor how they affected me. To my knowledge, no pain-relieving medication was administered during this process as the addition of such medication may lead to “inaccurate readings” of my “medical progress”.

Unregulated experimentation on young adults/children and experiments “measuring” Black people’s pain tolerance is not a new concept to western medicine.1 Measuring pain tolerance amongst Black Americans is an example of reporting the “ethnographically visible” (an objective observation) that obscures the ethnographically invisible (the social underpinnings of the ethnographically visible, typically the result of structural violence), which is the assumption that Black Americans experience pain differently than their counterparts.[3] In the case of my illness, prescribing me the multitude of unnecessary medication while repeating to my mother that every action was necessary in order to make me better (no matter how obviously painful) concealed the historical notion that Black individuals (primitive non-humans) experience pain to a lesser degree than humans (Eurocentric Whites). [1] By equating their experimentation on my skin to proper health care procedures, the physicians systematically erase their perpetuation of the ethnically invisible. This means of erasure takes the form of “mute suffering” (a social coping mechanism through which one forgets what is not wanted).[3] No matter how these physicians decided to reconcile their actions amongst themselves, I became a mere test subject on which they could actively test their various hypotheses in the name of medicine. The refusal to prescribe pain relief medication and/ or anesthetics while performing certain tests only further attests to their clinical subjectivity of not needing to prescribe patients of color with pain medication. This is possibly due to the socially ingrained notion that Black Americans experience pain differently being rendered invisible by our modern medical system.[4] From the perspective of medical professionals, they were not consciously trying to exploit my skin as a cell culture but rather working to find a definitive answer as to what

esentially went wrong with my cells and genetic makeup. Unfortunately, the results of their experiments justified their means

of testing no matter the toll this may take on me in months and years to come.

If there is nothing else to be taken from

this personal narrative, I hope I have efficiently conveyed the importance of considering the continuous exploitation of Black Americans within our medical system. The majority of procedures, medical operations, and understandings of the human body we know of today are the result of the relentless medical subjugation of people of color, particularly those within the African American/Black population. Overlooking the unethical use of Black patients as test subjects perpetuates the systematic erasure of the structural violence experienced by Black Americans in the medical system, which perpetuates the cycle of abuse towards patients of color in the name of progressing medicine. It is my hope that bringing the underlying medical abuse of people of color to the forefront of discussion will lead us all to reevaluate on what grounds and at what cost we exploit the underprivileged and disadvantaged in the name of “western medicine”.

Works Cited [1] Washington, H. A. (2010). Medical Apartheid The Dark History of Medical Experimentation on Black Americans from Colonial Times to the Present. Paw Prints. [2] Van Loon, F.H.G. (1928). Protopathic–Instinctive Phenomena in Normal and Pathological Malay Life .British Journal of Psychology 8: 264–276 [3] Farmer, Paul (2004). An Anthropology of Structural Violence.Current Anthropology 45(3): 305–25 [4] Crowley–Matoka, Megan and Gala True (2012). Nobody Wants to Be the Candy Man: Ambivalent Medicalization and Clinician Subjectivity in Pain Management. Cultural Anthropology 27(4): 689–712.

-01

PASSIVE AND ACTIVE EUTHANASIA: THE MEDICAL TROLLEY PROBLEM BY THEODORE MARGHITU

24 Magazine Title

Ever since the second half of the twentieth century,

“mercy killing” (which really means active euthanasia),

the medical field has been experiencing ongoing

it acknowledges the principle of “letting die” through

advancements but these advances have been more

“the cessation of the employment of extraordinary

technological than humane, while policy and ethics

means to prolong life”. The term “extraordinary

often lacked behind technology and science. Due to

means”, in this case, has been defined as “any

the advancement of technology, people can now live

procedure or medication whose origin is not the

for a long period of time in a vegetative state, as long

human in question (a.k.a. the patient)”.

as they are connected to a machine; however, we still do not know in which cases we should keep them

Doctors have embraced this position, as its absence

alive, and in which cases it would be more “moral” to

would have plunged them into an ethical paradox that

just pull the plug. An even more complex concern is

is similar to the infamous trolley problem: suppose

related to patients who are terminally ill and make

five people are tied to a railway, and there’s a trolley

demands to end their suffering, accepting that death

coming towards them. Would it be more ethical to

is the only bearable option. Assuming these patients

let the trolley kill the five people, or pull a lever in

have a complete understanding of the consequences

order to make the trolley change its path and kill

of their decisions and are free from any outside

only one person tied to another set of tracks (Fig. 1)?

influence, would it be more morally-acceptable to let

Were this policy not to exist, the only solution given

a patient die through the cessation of life-sustaining

to the physician is the Hippocratic Oath. Using the

treatment (passive euthanasia) rather than actively

Hippocratic Oath may seem strangely archaic and of

provoke his/her death through medical interventions

no contemporary help, since the oath states that it is

such as lethal injections (active euthanasia)? This

imperative to relieve suffering, and that is sometimes

paper will explore the varied views on the difference

at odds with its other imperative, that of prolonging

in the morality of passive and active euthanasia by

and protecting life. However, it is debatable whether

focusing on three points of view that dominate the

a policy is considered moral just because a better

discussions surrounding this issue: that passive

alternative does not exist.

euthanasia is more moral than active euthanasia, that the two types of euthanasia are morally equivalent,

The “Do no harm” imperative is used by Dr. John

and paradoxically, that active euthanasia is morally

Fletcher, physician and professor of biomedical

preferable to passive euthanasia. The focus of this

ethics at the University of Virginia, in his essay

paper won’t be determining the morality of passive

titled “Abortion, Euthanasia, and Care of Defective

and active euthanasia, but rather analyzing their

Newborns” (Fletcher 1975) . He uses this concept to

differences.

show that passive euthanasia is morally preferable to active euthanasia by arguing that during active

1) Passive euthanasia is morally preferable to active euthanasia

euthanasia, harm was done to the life of the patient, whilst for passive euthanasia it was not. However, Fletcher considers the ending of life as harm to life,

The official medical position, as dictated by the

and this consideration is debatable. In the cases of

American Medical Association (AMA) is that killing

incurable diseases, which inflict serious suffering

is different from letting die and that the former is

and impairments upon the patient, is the termination

wrong while the latter can sometimes be morally

of life worse for the patient than its painful

acceptable. Although it has withheld its approval of

continuation?

-03

A reaction to this question could be that, along with

that they can cure the patient. Even if, after all these

improvements in the science of medicine came the

attempts fail and the patient is not cured, it is still

creation of palliative care, which is meant to improve

in the physician’s duty to research the disease in an

the quality of life of patients and their families facing

attempt to find a cure (this argument brings forth

the problem associated with life-threatening illness.

the other duty of the physician, which is to help improve medicine through any means possible, such

This is done through prevention and relief of

as research).

suffering by means of early identification, impeccable assessment, and the treatment of pain, along with

Therefore killing a patient does not only forbid other

other physical, psychosocial, and spiritual problems.

physicians from trying to save the patient, but also

Palliative care uses mostly analgesics and sedatives

slows medicine down by eliminating a potential

in order to relieve the suffering of patients, but

resource for medical research. This point, however,

these analgesics have also been regulated to

considers the patient as a research subject rather

prevent any possible misuse of these potentially

than a human being, and fails to take into account

addictive substances. The World Health Organization

the economic consequences of the numerous medical

proposed an ‘analgesic ladder’ in the treatment of

procedures made by different physicians who try to

pain, beginning with a non-narcotic and progressing

save the patient (the cost of a major surgery revolves

through weaker and stronger opioids, depending on

around tens of thousands of dollars, on average). This

the type and intensity of the pain felt.

view also fails to take into account the physical and mental state of the patient during the course of his/

Moreover, as medicine is not a perfect science , there

her illness: the prognosis might be getting worse, or

remains a chance that the prognosis or the diagnosis

the surgeries might have been unsuccessful

made by the physician is wrong, and that the severity of the disease is actually exaggerated by the current

We can also consider passive and active euthanasia

diagnosis. Such an argument shows that active

from the point of view of the person performing

euthanasia is immoral by proving that a patient who

treatment (a.k.a. the physician or the nurse) rather

is left to die might still survive if he/she proves to

than the person receiving it. Douglas Neil Walton,

be resistant enough to the disease, or if the disease

researcher in reasoning, argumentation, and rhetoric

proves to be poorly identified. On the opposite side,

at the University of Windsor, emphasizes the fact

by killing, all possibilities are closed, and the physician

that in the case of letting one die, the actor (in

might kill a patient whose illness is not terminal. If

this case, the medical professional) can fight any

the physician considers the disease to be incurable,

act of interference against his own act, but won’t

that still does not mean that actively killing him is

necessarily do it (Walton 1981). For instance, if I let a

moral, since there may be other physicians who think

plate fall, I won’t necessarily attack a person trying

26 Magazine Title

to catch it. Similarly, if a patient is left to die,

although it entails a longer and usually more painful

the doctor won’t actively intervene if the patient

death. However, it apparently allows the physician to

somehow gets better, so this view takes into account

feel less guilty about the status of the patient than if

the possibility of a miraculous recovery of patients.

he/she actively ended the patient’s life. However, isn’t

However, if the actor kills a person, he/she will forcibly

the intent the same in the case of passive euthanasia

fight any attempt of interference that might occur

and of active euthanasia, since euthanasia in general

during the process4. Using the previous example, if

is defined as the act of “intentionally ending a life in

I throw a plate down and acknowledge the possible

order to relieve pain and suffering”?

outcomes of me throwing the plate, then I will oppose anybody that tries to catch the plate, as that person

2) Passive and active euthanasia are morally

interferes with my plan. Similarly, if a physician kills

equivalent

the patient and acknowledges the fact that he/she is killing the patient, then he/she will try again if the

James Rachels, American philosopher, is known to

patient happens to survive.

be one of the most fervent attackers of the view that passive euthanasia is morally preferable to

Probably the largest argument that favors passive

active euthanasia, and he focuses on the intent of

euthanasia over active euthanasia is the acts and

the physician in order to make his argument. Rachels

omissions doctrine, which states that there is a moral

affirms that moral accountability can accrue from

difference between performing an act and failing to

inaction just as well as from action, and he uses the

do the opposite. In the case of euthanasia, this point

famous examples of Smith and Jones to prove his

of view argues that it is morally preferable to fail to

point (Rachels 1975).

provide treatment than to actively end a person’s

In his argument, both Smith and Jones stand to gain a

life, just because in the former case the physician

large inheritance if anything were to happen to their

is technically not doing anything, meaning that he/

six-year-old cousin. One night, while the cousin is

she is not purposely killing the patient. This point of

taking a bath, Smith sneaks in and drowns the child,

view is reinforced by the difference in guilt that the

making the murder look like an accident. In another

physician or the nurses feel when they administer a

case, Jones also sneaks in planning to drown the

lethal injection rather than let the patient die (Dines

child, but just as he enters the bathroom, the child

1995). On the other hand, an obvious critique of this

slips and hits his head, falling face down in the water.

argument is that the feeling of guilt is personal, and

Jones stands by, ready to push the child’s head back

is influenced by a large number of factors, Therefore,

under the water, but such a measure proves to be

it is impossible to affirm with certainty that the

unnecessary since the child drowns all by himself,

difference between active and passive euthanasia

“accidentally”. In this case, it is safe to assume that

is the origin of the difference in the guilt felt by the

Smith killed the child, while Jones let him die, but it

physicians. It can also be said that a feeling of guilt is,

is still very difficult to say that Jones’ fault is smaller

by philosophical and scientific points of view (which

than Smith’s. The reason for that, Rachels argues, is

are relevant for this paper), not sufficient for an

that they both kill the child. By not doing anything,

argument and can only serve as an example.

Jones participates in his death, since if he did something, the child would have survived. Similarly,

Passive euthanasia seems to be accepted as a more

if Smith had not drowned the child, he would have

moral end for the patient than active euthanasia,

survived. Both men had the same motive, personal

-05

gain, and both had the same end goal in mind when

to media. Indeed, murders are often televised partly

they acted, and that is sufficient to justify the moral

because they provide a safe source of income for

equivalence between passive and active euthanasia.

the media companies, whilst occasions of letting die rarely do (since they are “less entertaining”). Murders

This argument, however, has been criticized for only

are presented as the worst thing that a person can

being related to the issue surrounding passive and

do, and people apply this notion to their lives without

active euthanasia analogically, and an argument from

putting more thought into how similar killing and

analogy is only as strong as the resemblance between

letting die actually are.

the analogies. Since here they are substantially

3) Active euthanasia is morally preferable to

different, there are no grounds in Rachels’ argument

passive euthanasia

for concluding that the passive/active distinction is always morally irrelevant (Beauchamp 1978, 248). Moreover, Rachels’ view seems to be in direct contrast

Some people think that, in a medical context, killing

with the acts and omissions doctrine, which is favored

a terminally-ill person is better than letting him/her

by the American Medical Association. From a legal

die of “natural causes”, and the reasons that they

point of view, Rachels’ arguments are invalid, but that

bring up are related to the wellbeing of the patient.

does not necessarily mean that they are invalid from a

Rachels, for instance, describes the suffering of

philosophical or bioethical point of view.

patients who do not undergo treatment and are left to die of their specific diseases in the hospital. What that

The probability of outcome has previously been

implies for the patient is a long period of suffering

discussed, and we managed to say that in all cases,

without any form of relief, and it does not seem

the patient entered the process of dying. Therefore,

justifiable to let a patient suffer when the physician

it can be said that, although the doctor kills the

can eliminate his/her pain (which is one of the main

patient by actively injecting him, the patient was

aims of the physician, considering Hippocrates’ Oath).

already dying, and the physician shortened this

For the patient, therefore, a lethal injection would be

process, which is similar to what happens in the case

beneficial, since it would eliminate the patient’s pain

of passive euthanasia. In both cases, the physician

and would stop his/her struggle with the disease.

does something (either a positive or negative act); whereas “positive” means “actively doing (an act)”

Since Rachels wrote his article, numerous medical

while “negative” means “refraining from doing (an

advances have contributed to the creation of better

act)”. Refraining from doing is still doing, since

sedatives, which can be used to alleviate the pain of

refraining is, in itself, a lack of action. What does this

the patients. Therefore, these drugs can be used to

argument entail for the physician? For one, any guilt

manage the patient’s pain during the last moments

felt should not be felt more strongly in the cases of

of his/her life, which would devalue the argument and

active euthanasia than in cases of passive euthanasia,

make active euthanasia pointless. There is, of course

and the excuses made by physicians who “go along

a certain morbidity to letting a patient die from a

with nature” when they let their patients die are not

disease that is slowly consuming him/her, and there

valid. How can the difference in guilt be explained

are also problems related to the drugs themselves.

then? Rachels argues that the reason why people

These drugs are assessed depending on the pain of

usually think that killing is worse than letting die is

the patient, and as the patient gets used to the drugs,

directly linked to past experiences, mainly related

these become less effective and need to be upgraded.

28 Magazine Title

The more “efficient” drugs are, however, the more

that, after the moment the patient realizes that he/

addictive they are (such as morphine and other

she is dying, he/she can no longer be considered an

opioids like methadone). For terminally ill patients,

autonomous decision-maker because of the shock

addictive drugs can push them even more towards

created by the imminent death. The patient goes

analgesic drug abuse, as they want to feel as

through the “five stages of dying” (namely, Denial,

comfortable as possible during the last period of their

Anger, Bargaining, Depression, and Acceptance), and

lives. On the other hand, such an addiction would

depending on the stage at which the patient is at,

pose a problem to the economy as a whole, since such

his/her decision may vary considerably (Kubler-Ross

drugs are very expensive.

1969). Moreover, it is difficult to quantify the dignity of a patient, although it is difficult to argue that a

An even newer problem is related to the abuse of

patient who is tied to his/her bed during the whole

these drugs by the physicians themselves, who start

day, who requires assistance from a nurse for every

administering addictive drugs to dying patients very

physiological need, and can’t communicate anymore,

early although they are not necessary. With efficient

has dignity. Such cases are, of course, very rare, but

administration of drugs and non-pharmaceutical

they exist.

alleviation of pain (through physical therapy, for example), these problems are very unlikely to appear,

Overall, three views dominate the discussion revolving

and so there would be no need for active euthanasia.

around the differences in morality between passive

The autonomy of the patient would be respected, and

and active euthanasia. The first view (respected by

the physician would feel less “guilty” because of the

the law) proclaims that passive euthanasia is morally

decision.

preferable to active euthanasia by arguing that active euthanasia represents harm to the patient

One of dying patients’ last requests is usually for

while passive euthanasia does not, and that passive

a dignified death, where dignity is considered as

euthanasia allows for unpredictable improvements in

a state free from suffering or disabilities. Patients

the health of the patient, while active euthanasia is

who go through passive euthanasia are slowly

sure to stop any possibility for recovery. The second

dying, and although their pain can betaken care

view argues that passive and active euthanasia are

of with medication, it is needless to say that their

morally equivalent, since the motive is the same,

bodies are deteriorating. In time, the patient might

and since the act of not doing anything is still an act

need assistance with basic needs such as going

that harms the patient. Along with these two views

to the bathroom or eating, and such needs tie the

comes a third which is not defended by many, but

patient to other people such as nurses, and reduce

which argues that the comfort and the dignity of the

their autonomy. In the case of some diseases such

patient are more important than the “Do no harm”

as Alzheimer’s, the patient’s mind might also be

principle present in the Hippocratic Oath. However,

disturbed by the illness. Therefore, wouldn’t a patient

this last point of view presents risks such as potential

prefer to die when he/she is autonomous and logical

cases of abuse and/or malpractice, as well as outside

enough to take decisions for himself/herself, rather

influences coming from the patient’s environment

than wait in a continually worsening state for natural

affecting the patient’s decision-making. Ultimately,

death to occur?

physicians may or may not adhere to any of these views, therefore possibly biasing their decision-

Such an argument is faced with the opposition

making. A recommendation for physicians would be

-07

to isolate their point of view and attempt to remove it

Kubler-Ross Elisabeth. 1969. On Death and Dying.

from their decision-making. A suggestion for patients

New York: Macmillan.

would be to, if possible, question the physician on these views in order to uncover his/her hidden biases and in order to truly make an arbitrary, informed decision.

References Burton’s Legal Thesaurus, 4E. S.v. “Euthanasia, passive.” Retrieved February 9 2019 from https://legal-dictionary.thefreedictionary.com/ Euthanasia%2c+passive Burton’s Legal Thesaurus, 4E. S.v. “Euthanasia, active.” Retrieved February 9 2019 from https://legal-dictionary.thefreedictionary.com/ Euthanasia%2c+active Fletcher, John. 1975. “Abortion, Euthanasia, and Care of Defective Newborns.” New England Journal of Medicine 292, no. 2: 77-78. Walton, Douglas. 1981. “Splitting the Difference: Killing and Letting Die.” Dialogue 20, no. 1: 68-78. Dines, Alison. 1995. “Does the distinction between killing and letting die justify some forms of euthanasia?” Journal of Advanced Nursing, 21: 911916. Medicine.net. “Medical def. of euthanasia.” Retrieved February 9 2019 from https://www.medicinenet.com/ script/main/art.asp?articlekey=7365 Rachels, James. 1975. “Active and Passive Euthanasia.” New England Journal of Medicine 292, no. 2: 78-80 Beauchamp, Tom. 1978. ‘A Reply to Rachels on Active and Passive Euthanasia,’ Beauchamp, Tom and Perlin, Seymour, eds. Ethical Issues in Death and Dying, Englewood Cliffs, Prentice-Hall, Inc.

30 Magazine Title

Centered Hannelore Tahmassebi University of Virginia

You have cancer You will die If you do not listen You must eat You must run Come on now Be healthy He does not listen He does not try I give him lists So he will not die I go round and round But never to the source The patient is the center The patient is the subject matter He must decide He must direct He must want to change He must want to live I give my job to you Direct me to your will And I will stand my ground For you

I wrote this poem in the fall of 2018 when my father and I had a disagreement on his lifestyle choices with his diagnosis of Leukemia. During this time, as a nursing student, I was taking a Care class where we were learning about patient centered care. Therefore, when I wrote this poem it was a way for me to express my fears for my father and learn that he needs to decide how he wants to live and take care of his health. I also realized I needed to support his choices and understand that I do not know the extent of what he is truly going through.

31 Illustration by Nandita Venkataraman

Limericks as playful simulacrums of time, imaginations of the polity, and other (bio)ethical adventures. EDWARD STRICKLER

University of Virginia School of Medicine, Institute of Law, Psychiatry and Public Policy

For your consideration: Guns kill many and mainly by suicide although NRA guns up fears of homicide. This appears to be contrarian â&#x20AC;&#x2DC;cause many suicides are young folks, rural guys, and veterans. When we make this partisan politics are we proud?

Our polity is awash in a red tide (or is it a blue wave, or a purple tsunami, or some other drowning metaphor) of righteousness about rights. Righteous, self-righteous, and un-righteous claims about rights -- abuse of rights, denial of rights, neglect of rights, abandonment of rights, assertion of rights, oppression of rights, the right to have rights -- are on the verge of drowning us with the proliferating toxic bloom. Some years ago I attended a talk about Second Amendment rights by the leader of a statewide 2A rights organization. The toxic bloom of my self-righteousness showed in my red face. I dueled with the speaker about the public health epidemic of suicide, epidemiologically the most common gun violence, and the complicity of the 2A rights organization in that carnage. The speaker was calm – as a former detective should be, shouldn’t he? – and said that the Second Amendment includes the person’s liberty to kill herself. How furious should I be with such a claim? A claim so extremely violative of human dignity? Or was he making a claim - as he seemed blithely to believe - about the dignity of a person’s choice? About who can decide the person’s end: the nursing home administrator moving the patient out to a lesser quality facility, the hospital’s ethics consultation team who knows the patient only as an interesting case (who may or may not be able to pay the bill, even in a hundred lifetimes), the insurance claims department or small print of the insurance plan denying coverage, or the person with her gun? (Bio)ethical inquiry rides these waves. The speaker responded to my further probing: Q. Does the easy access to a firearm drive a decision for suicide? A. The community should have more resources or mental health interventions. Q. Will your organization endorse or discuss policy or law to provide more mental health interventions? A. We may as individuals but that is not the mission of our organization. Q. What is the mission? A. To protect Constitutional rights.

...

My red tide ebbed with the speaker’s simple honesty. Richard Rorty, a philosopher who taught at the University of Virginia throughout the 1980s and 1990s, said that we live in this sort of pragmatic age: “the traditional Western metaphysico-epistemological way of firming up our habits simply isn’t working anymore … So the pragmatist suggestion … that we think of our sense of community as having no foundation except shared hope and the trust created by such sharing – is put forward on practical grounds” (Rorty, 1985, p. 15). Of course, what is pragmatic support for individual autonomy to one group is violative of the polity to another group. The gun rights group claims that the Second Amendment is primary to the First since it may fall to individuals and local communities to defend their 1A rights (of religion, speech, and assembly). In Rorty’s language, they are founding their community in a ‘shared hope and trust’ that each will help protect each other’s rights, by arms. Another side calls such a foundation something other than ‘hope and trust’. Is our polity struggling in a cataclysm of conflicting pragmatisms? We are blistered by the red tide(s) of one partisan ideal crashing against a different partisan ideal. Ouch, it hurts. NOTE: Several other limericks were submitted for publication but space did not allow publication of all. The body of work represented how something as playful as the limerick form could introduce or catalyze discourse on complex topics of interest to (bio)ethical inquiry. If you are interested in reading the body of work please contact the author. REFERENCES: Rorty, Richard. “Solidarity or objectivity.” Post-analytic philosophy 3 (1985): 5-6.

Many Animals Are Equal: A Consequentialist, Cognitive Basis for Moral Considerability By John Han University of Virginia

Abstract Many consequentialist arguments in favor of the equal treatment of animals are based on their sentience-based interests, the most basic of which are to avoid pain and maximize pleasure. I believe that the criterion for having equal moral considerability should be higher. This criterion ought to be based on having consciousness as that is the basis for real, self-aware thoughts and actions that can engage with moral problems. In this essay, I first argue that the pain-and-pleasure principle for assessing moral considerability is based on problematic assumptions of animal interests and their moral valuations. I then argue why the threshold for actual interests, and thus moral considerability, should be based on consciousness, which is accessible only to a smaller group of cognitivelydeveloped beings. I then respond to potential critiques, ending with suggestions on how we humans ought to engage with other animals and the environment under this ethical framework.

the eminent philosopher Peter Singer, the contemporary assumption of “equal treatment” of the late 1980’s was mistaken in its denial of rights to other animals based on the assumption that they had damningly inferior capabilities for rational behavior – as was historically assumed for women and racial minorities. In his groundbreaking essay, “All Animals are Equal,” Singer argues that there is no reason to draw a special line between humans and non-human species-to discriminate against a sentient being is to act upon speciesist prejudices and arbitrary divisions of taxonomy that do not justify such an action (Singer 1974). Dogs and dolphins have different physical and cognitive capacities than humans have, but this premise of unequal facilities does not adequately justify a corresponding inequality of treatment – to do so is prejudiced and akin to racism and sexism. Singer argues that such speciesist prejudices were not morally wrong by themselves; in other words, there must be an underlying reason why such they are indeed hazardous. He argues that it is by their violation of the doctrine of equal moral considerability (i.e., a matter of having one’s interests factored into a utilitarian calculus, and thus the ability to be morally wronged) that makes such unequal treatment concerning (Singer 1974). This claim does not assign equal value to life-in-itself for humans or animals, or indeed any biota, but it relies upon a consequentialist ethical framework: the criterion for moral considerability is based on the capacity to experience suffering-- in other words, basic sentience. Given that animals necessarily seek to minimize pain and maximize pleasure, violating their goals by inducing suffering – via intensive forcefeeding or in vivo medical experimentation – is thus prima facie morally wrong. “The capacity for suffering and enjoying things,” as he notes, is a prescription for maximal equality, and it seems to cogently solve the issue of

Dogs and dolphins have different physical and cognitive capacities than humans have, but this premise of unequal facilities does not adequately justify a corresponding inequality of treatment – to do so is prejudiced and akin to racism and sexism.

prescribing equality for animals and even for (human) racial minorities and the disabled. To value one group over another, and thereby cause suffering, violates this baseline principle (Singer 1974). A wide group of animals fit in his group of morally considerable beings, and his position is simple and intuitive. It is a good prescriptive case for bettering the situation of not just humans, but beings across the animal kingdom as well: regardless of the variations in cognitive capacity, all pain-sensitive individuals deserve equal respect and treatment. However, I believe Singer’s standard for moral considerability is too low; problematically, his argument is contingent upon the premise that avoiding pain is a true interest directed by an animal. It is currently understood that pain, a “noxious stimuli” that forewarns damage (or the threat of it) to tissues, evokes a reflex response of suffering and is held by all animals with nociceptive (pain-stimuliprocessing) neural functionalities, especially via the central nervous system (Sneddon 2014).

This means many beings are morally considerate, as almost all major animal taxa (save sponges) have basic nociceptive faculties (National Research Council 2009). This is also where problems in his theory exist. Most invertebrates have no brain or neural cluster to process pain signals; these species instead resort to localized stimulus-response signaling. It is generally regarded in zoology that invertebrates, besides cephalopods, cannot truly experience pain. But even for vertebrates (who all have a central nervous system), it is not known how some, but not all, brains can process such a noxious stimulus from a body part into phenomenally conscious awareness. Measuring stress and emotions of suffering in reptiles, fish, and birds is enormously difficult, and there is no true analogy to humans’ understanding of pain (Proctor 2012). lacing moral importance on sentience (a broad awareness of feeling) relies on the faulty presupposition that all animals have some self-directed interests prior to desiring maximum pleasure or minimum pain. To have self-directed interests is to have thoughts, actions, or desires independent of deterministic stimulus-response behaviors, meaning those controlled by external factors – genetic expression – and not individual free will. Yet for several species, Singer’s principle considers reflex behavior as human-like actualization. This is still an arbitrary determinant for blanket moral considerability. Many animals may have basic “interests” in that they have a reliable tendency to avoid pain and stressors, but this arbitrary behavior creates no conscious interest. What is still missing from Singer’s sentiencebased argument is the crucial link to creating self-directed goals, if mitigating such is morally harmful. To have such is to have conscious, subjective behavior independent of automated stimulus-response. This necessarily means having some conception of self-awareness.

believe the standard for equal moral considerability is based on the criterion not merely of sentience, but sapience – a capacity

for conscious thoughts and actions that direct moral engagement. This an active awareness of one’s body and environment is available in variable degrees among vertebrates and allows for subjective feelings and desires (Morin 2006). The key distinction is that while Singer counts sentient animal interests (avoiding pain) as sufficient for moral considerability, I believe this characteristic is insufficient and claim that self-directed, conscious goals are required. This allows for engaging with morality, which comes from independently choosing actions – and which is inaccessible for beings that act only within the realm of arbitrary, deterministic responses to stimuli. Conscious choice gives meaning to an action. This includes self-determined interests that invariably include some basic preconception of goodness, or some sort of normativity that other non-conscious species cannot access. This, in many cases, justifies hedonism (i.e. the good as experiencing maximum pleasure), which is a moral framework that centers interest upon survival and comfort in a more nuanced manner than pain perception. While most animals take spontaneous actions and a sizable subgroup take sentient ones, the group of animals deserving of equal moral considerability are the ones that can make independent actions. Any other “interests” are automated, arbitrary products of determinism. True self-determined interest relies on a conscious, autonomous identity, whether animal or human, and allows for the personal ownership and responsibility of an action, from which the possibility of moral claims exist. A more robust defense of equality can thus be made: given that many animals have a conscious capacity for selfpotentiated interests and actions, and thus moral interactions, it would thus be wrong to mitigate that freedom, unless a higherorder freedom produces better social utility. Since self-aware actions (including mirror self-recognition, or the ability to realize oneself from the reflective image of a mirror) are functionally dependent on consciousness, a

select group of cognitively capable vertebrates ought to be included. Many animal species besides Homo sapiens can experience a degree of personhood, or self-aware identity, from consciousness. They too can take selfdirected actions and engage in the moral world. So which animals are “conscious enough” to have the capacity for independent thought and action? This is tough to answer because it is hotly debated whether certain chordate animals, beyond widely-studied primates, have consciousness. But, if one uses a sound method to determine consciousness, such as the mirror self-recognition test, many mammals and birds could be considered, with the remote possibility of including fish, reptiles, amphibians,and octopi (a nonvertebrate animal) (Allen and Trestman 1995). There is little doubt that humans and chimpanzees take conscious, free, and goal-

(Rolston 2001). The problem with this claim is that moral value is placed upon arbitrary events: natural selection, changes in local climates, and so on. A “teleological (i.e. goaldirected) drive towards preservation” is instead merely a set of biological functions that helped one set of organisms survive and reproduce better than another. There is no reason why a certain survival mechanism determined by evolution has moral value (Allen and Gould 2003). Moreover, this preservation instinct implies a conscious action by the mind where there likely is none – unless the claim is about a “life force” in animals. For most individual beings, there is no real teleological “will to preservation” beyond nonconscious stimulusresponse, unless that will is consciously selfdetermined. What Rolston sees as preservationist teleology in animals is just biological systems that got more efficient, over time, at keeping

“Many animal species besides Homo sapiens can experience a degree of personhood, or self-aware identity, from consciousness.” oriented action, but to say that other animals do so requires a thorough investigation of how consciousness exactly works in them – and a more robust explanation of what consciousness actually is. This raises the standard to include a more defensible group than all beings that can feel pain or pleasure, but the boundary becomes “fuzzier” since it becomes somewhat unclear which precise animals should be considered. But by and large, a delineation based on the capacity for consciousness can serve as a helpful defense for the equal treatment of many animals. There are several potential objections to these claims. A deontic critique could extend moral considerability to all life-forms and even whole ecosystems; one such theory is the intrinsic value of nature – that beings and environments have some essential and immutable value due to their drive towards preservation – supported by Holmes Rolston

certain organisms alive. Environments are determined by the arbitrary actions of plant and animal populations and changing climate; they have no intrinsic goal to preservation and indeed can change to a less “optimal” form. From another deontic perspective, one could advocate for exclusive rights based on the value of identity-derived personhood: that only human beings have the capacity for a personality unique and complex enough to reflect on morality. This ability to face problems of normativity is based on having a practical identity of the self, which is based on high cognitive capacities for consciousness. But this claim is erroneous, given that consciousness and self-identity are shared among several mammals--not just unique among human beings.

The other critique of this sapience based

moral framework for animal rights would be

that the bar is too high to defend the interests of children and the mentally incapacitated. The argument is that such people would not have the necessary cognitive preconditions necessary for moral considerability, if some higher order of awareness is necessary. But the premise in these critiques is flawed: pediatric research shows that newborn infants, though unable to make developed conceptualizations of the self, have a minimal level consciousness ex utero (the extension of this premise leads to an interesting argument in favor abortion since fetuses’ reactions are “probably preprogrammed and have a subcortical nonconscious origin”) (Lagercrantz and Changeaux 2009). This may be enough to pass the mirror self-recognition test or other methods of gauging consciousness, but if its existence in infants seems questionable, it would be best to err on the side of caution, as with other “boundary” species of which we are unsure about their consciousness. After all, human children grow up to have the ability to take conscious, self-potentiated actions (Rochat 2003). In the mentally incapacitated, only severe brain damage (e.g. palsy) leading to a brain-dead or vegetative state can destroy consciousness; for instance, schizophrenia causes dysfunction, but not a deletion, of conscious order (Venkatasubramanian 2015). This means that both groups of humans can indeed access basic self-identity, some free will, and issues of normativity. To block their interest and cause suffering would still be a moral wrong (Bruno et al 2013). To argue for the rights of those in a persistent vegetative or brain-dead state, wherein consciousness is lost, a different non-personhood moral framework of utilitarianism can be applied instead by maintaining that such people’s health provides maximal utility to their friends and family (though at a substantial societal burden expressed in increased hospital labor and capital shortages to support such expensive inpatient care). Although both are still beings with equal moral considerability, this need not extend to equal moral responsibility, as they have

much less agency than others to carry out certain obligations. As with other animals, they can consciously engage with morality with self-directed interests, but the burden personal responsibility is established at a higher bar than for moral considerability.

now have a group of morally considerate beings which have justified claims for basic rights. Individual beings within this group hold differing levels of cognitive abilities, yet we ought to afford them equal consideration because each being has real and conscious self-determined interests. So, given this moral framework, how should we humans treat other such animals (and the environment, in general) as we go about our lives? To be sure, the practical applications are not dissimilar from Singer’s calls against agricultural force-feeding, vivisection, and institutionalized slaughter, although humans may have better justifications for eating shellfish. And while most non-human animals likely will not stop themselves from maiming and feeding upon other animals, we sapient humans fully understand the ethical implications of our behavior and can change it – for example, by modifying the sources of our diets. We also have an imperative to establish a better standard of living for such animals. Whether this is by preventing poaching, restoring ecosystems, cleaning contaminated Superfund sites, or curbing harmful emissions, insofar as the environment can be made better for sapient beings, we ought to do so.

References Allen, Colin and Gould, Stephen Jay. “Teleological Notions in Biology.” Stanford Encyclopedia of Philosophy, Stanford University, 28 May 2003, https://plato.stanford.edu/entries/teleology-biology/#ment.

Proctor, Helen. “Animal Sentience: Where Are We and Where Are We Heading?” Animals. 2012. 2(4): 628–639.

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Ethical Dilemmas in the Terminal Condition Requirement for Living Will and Physician Aid-in-Dying Policies in the U.S. By: Hyerin Kwak

Case Western Reserve University Alumnus

Abstract: In the United States (U.S.), living will and physician-assisted suicide policies often only apply when an individual is given a terminal prognosis of six months or less to live. However, the established standard of these policies restricts the availability of end-of-life care to individuals who have more drawn-out terminal illnesses and ambiguous timelines of disease progression. The aim of this paper is to assess the ethical issues within limiting these policies to a terminal condition requirement, and then compare the U.S. to what some consider to be the current slippery slope in the Netherlands. Limiting end-of-life policies to a terminal condition requirement is problematic due to prognostic error with terminal illnesses, a lack of consensus among health care providers on what predicted survival time makes a condition terminal, the poor quality of life at the end of life in the U.S., and the fact that those with less predictable diseases, such as dementia, cannot utilize these policies in the U.S.

Since the mid-1900s, there has been a steady progression in the United States (U.S.) towards an absolute right of competent adult patients to refuse life-sustaining medical treatment. It was established as a protected constitutional right in the case of Cruzan v. Director, Missouri Department of Health.1 The Missouri Supreme Court had previously ruled in favor of the state’s policy to prevent Nancy Cruzan’s parents from terminating life support via a gastrostomy tube after she had been left in a persistent vegetative state. However, the U.S. Supreme Court ruled in 1990 that competent individuals had the right to refuse medical treatment under the “Due Process Clause” of the Fourteenth Amendment but left the decision up to the state of Missouri to set the standard for clear and convincing evidence that the patients would want life support withdrawn in those circumstances for which incompetent patients lacked the right to refuse medical treatment.2 In the case of Karen Quinlan, who was also determined to be in a persistent vegetative state, the Supreme Court of New Jersey appointed Quinlan’s father, Joseph, as her guardian and determined that if the hospital ethics committee determined that there was no reasonable possibility of Karen becoming conscious and having cognitive abilities, then the life-support system (the ventilator) could be withdrawn without any liability.3 However, this seemingly absolute right has been tempered by the language in living will laws and physician aid-in-dying laws, which require either a terminal diagnosis of death within six months or an incurable and irreversible condition that will lead to death within a reasonably short time without life-sustaining treatment. The rulings on the right to die and the right to assisted dying cases in the Supreme Court have given states the power to determine the morality and legality of physician aid-in-dying. In Washington v. Glucksberg (1997), the Supreme Court ruled that while the right to die was not protected by the Constitution, states were given the “wide scope to legislate” on this issue.4 Within the same year, Oregon became the first state to authorize physician-assisted dying with the enactment of the Death with Dignity Act.5 In Gonzales v. Oregon (2006), the Court further ruled that “the federal government could not prohibit physicians from prescribing controlled drugs to assist patient deaths if authorized 1. Cruzan v. Director, MDH, 497 U.S. 261 (1990) 2 “Cruzan by Cruzan v. Director, Missouri Department of Health,” Chicago-Kent College of Law at Illinois Tech, accessed March 15, 2016, https://www.oyez.org/cases/1989/88-1503 3. In re Quinlan, 355 A.2d 647, (NJ 1976) 4. Lawrence O. Gostin and Anna E. Roberts, “Physician-Assisted Dying,” JAMA 315(2016): 249, accessed March 15, 2016, doi:10.1001/jama.2015.16586. 5. Ibid., 249.

under state law.”6 This ruling stated that if acceptable according to state laws, physician-assisted suicide was permissible.7 In 2009, Washington and Vermont passed legislation to allow physician-assisted dying, while Montana authorized it in 2009 by court decision, and California in 2016.8 In 2014, New Mexico also legalized aid in dying by a judicial ruling, like in Montana.9 A major common point in the legislation for Oregon, Washington, Vermont, and California is that in terms of the diagnosis of the patient requesting physician-assisted dying, two physicians must agree that death is likely within six months.10 While the language in these laws is used to prevent the slippery slope that may occur if anyone is allowed to utilize these options, these imperfect filters may lead to people suffering more at the end of life. This paper will first address the ethical problems associated with limiting these forms of autonomous decision making to only those with specific terminal diagnoses and then analyze the slippery slope that these limitations are trying to prevent. Ultimately, I will argue in favor of more broad language, given the limitations of prognostication, a lack of consensus about what physicians think is “terminal,” and how those who are suffering from dementia or any other neurodegenerative disease without a clear prognosis may be excluded from getting ethically justified relief for their suffering.

Ethical Arguments For and Against Physician Aid-inDying Policies in the U.S.

The justifications for legalizing physician-assisted dying in some states in the U.S. have been centered on autonomy and beneficence. Providing this option to patients with severe life-shortening illnesses preserves their dignity and respects their autonomy to control their dying process, if they wish to do so. Those in favor of legalizing physician-assisted dying in the U.S. view it as part of the accepted continuum of the right to refuse treatment and withdraw life-sustaining treatment and as a compassionate and beneficent measure to offer relief of “terminal physical pain and disability.”11 Those in favor of legalizing physician-assisted dying assert that a patient with decision-making capacity has the right to 6. Ibid., 249. 7. Ibid., 249. 8. Ibid., 250. 9. David Orentlicher et al., “The Changing Legal Climate for Physician Aid in Dying,” JAMA 311(2016): 1961, accessed March 15, 2016, doi:10.1001/jama.2014.4117. 10. Gostin and Roberts, “Physician-Assisted Dying,” 250. 11. Ryan P. Clodfelter and Eli Y. Adashi, “The Liberty to Die,” JAMA 315(2016): 251, accessed March 15, 2016, doi:10.1001/jama.2015.16242.

refuse life-sustaining treatment and that those who are suffering greatly from incurable and irreversible illnesses should not be forced to undergo a prolonged and painful dying process.12 Because patients with severe illnesses want control over “their own bodies, their own lives, and concern about future physical and psychosocial distress,” patients can get peace of mind from the possibility of physician-assisted death without ever using it.13 In Oregon, one in fifty terminally ill patients discuss the option of physician-assisted death, but only one in five-hundred directly accesses the option of physician-assisted death.14 Thus, proponents of legalizing physician aid in dying see this option being given to terminally ill patients as one of the last resorts and a way to respect their dignity and personal autonomy during their own dying process. Opponents of legalizing physician-assisted dying in the U.S. feel that physician-assisted dying actually violates a patient’s autonomy and can lead to discrimination and coercion. Because the cost of the lethal medication for assisted suicide is generally much cheaper than the cost of treatment for illnesses at the end of life, Golden and Zoanni (2010) argue that legalizing physician-assisted suicide can lead to greater incentives to deny treatment and push for lethal medication for assisted suicide.15 They also argue that external pressure may lead to coercion of elderly persons to choose assisted suicide in order to avoid becoming a burden to their family or caretakers.16 They also argue that patients may not fully consider the alternatives to assisted suicide because they lack quality care to manage their condition and the associated symptoms.17 The safety measures of these policies in the US are also not entirely foolproof; Ganzini, Goy, and Dobscha (2008) found that one in four patients who requested physician aid in dying had clinical depression.18 Another common argument made against legalizing physician-assisted dying in the U.S. is that it is never morally justified to take a life and doing so devalues human life—a similar basis is used for the conservative ethical argument against abortion.19 Some also argue that physician-assisted suicide is not requested for the purpose of alleviat12. Orentlicher et al., “The Changing Legal Climate,” 1961. 13. Timothy E. Quill et al., “Responding to Patients Requesting Physician-Assisted Death,” JAMA 315(2016): 245-246, accessed March 15, 2016, doi:10.1001/jama.2015.16210. 14. Ibid., 245. 15. Marilyn Golden and Tyler Zoanni, “Killing us softly: The dangers of legalizing assisted suicide.” Disability and Health Journal 3 (2010): 18, accessed March 15, 2016, doi: 10.1016/j. dhjo.2009.08.006. 16. Ibid., 20. 17. Ibid., 20. 18. Linda Ganzini, Elizabeth R. Goy, and Steven K. Dobscha, “Prevalence of depression and anxiety in patients requesting physicians’ aid in dying: Cross sectional survey,” BMJ 337 (2008): a1682, accessed March 15, 2016, doi:10.1136/bmj.a1682. 19. Gostin and Roberts, “Physician-Assisted Dying,” 249.

ing pain and suffering; Yang and Curlin point out that most patients in Oregon requesting physician-assisted suicide are mostly concerned with losing autonomy, losing dignity, and other more psychosocial concerns, with less than a quarter of respondents reporting any concern about inadequate pain control.20 Based on these concerns, these opponents argue that physician-assisted suicide goes against the physician’s professional role to “attend to those who are sick and debilitated, seeking to preserve the measure of health that can be preserved, and to help them bear the pain and progressive loss of autonomy and bodily function that illness often brings.”21 Those who oppose legalizing physician-assisted dying in the U.S. feel that these factors actually lead to violations of patients’ free will and autonomy. Language of Living Wills and Physician Aid-in-Dying Laws in the U.S. The living will is a document that varies from state to state and is used to express the wishes of competent adults to authorize the withdrawal or withholding of treatments in the event that this person becomes incompetent due to some severe illness or condition. The term “living will” was established by Luis Kutner in 1969 to describe “a document in which a competent adult sets forth directions regarding medical treatment in the event of his or her future incapacitation.” While every living will act requires that the patient’s condition or prognosis be terminal “or sufficiently poor in order to bring the provisions of a living will into effect,” there are subtle differences in regards to how statutes for different states define what is a terminal condition or when a living will can be brought into effect. Only Texas and Oklahoma explicitly include the criteria of expected six months of survival to bring a living will into effect on their state-specific forms. Other states use language to establish eligibility criteria for the living will to be brought into effect, such as death within a reasonably short time, imminent death, or death in the near future. These subtle differences are important because the wishes expressed in a living will cannot be brought into effect unless the “declarant’s condition qualifies under the statute.” The majority of living will 20. Y. Tony Yang and Farr A. Curlin, “Why Physicians Should Oppose Assisted Suicide,” JAMA 315 (2016): 247, accessed March 15, 2016, doi:10.1001/jama.2015.16194. 21. Ibid., 247-248

statutes in the U.S. require that the patient be “in a condition where death will occur shortly whether or not life-supporting treatments are employed.” While Gelfand does assert that “political compromise has produced the present requirement that the patient’s prognosis be terminal,” if living wills are supposed to represent a mode of enhancing and further recognizing patient autonomy, then patients should (in line with this value) be able to expand their wishes to decline treatment or interventions when they are incapacitated and expected to endure great pain or undergo some form of drastic treatment. And because the forms provided to standardize the living will format within each state are templates, they will often fail to apply perfectly to the situation in which a declarant in reality finds themselves. This means that some individuals who wish to withdraw treatment may experience prolonged suffering because they do not meet the exact criteria of having a terminal condition. The language for policies encompassing physician-assisted suicide in the U.S. is problematic in a similar way to the problematic and incompatible language of living wills. The language for these policies legalizing aid in dying is very similar among the states in which physician aid-in-dying is currently legal in regards to the eligibility criteria to be able to utilize the policies. The “End of Life Option Act of California” legalized physician-assisted dying in California in 2015. The law requires that patients must reside in the state, be competent, and be at least1 18 years of age to be able to request physician assistance with dying. The patients must be diagnosed with a “terminal illness that, subject to reasonable medical judgment, will prove fatal within 6 months.” In Oregon, the patient must submit two oral and one written request for physician-assisted dying. Two physicians must agree on the diagnosis and that death will likely happen within 6 months for the patient. There must be at least 15 days between the patient’s second oral request and the prescription from the physician. Then there 22. George J. Annas, “The Health Care Proxy and the Living Will,” N Engl J Med 324 (1991): 1210. 23. Gregory Gelfand, “Living will statutes: the first decade,” Wisconsin Law Rev 1987 (1987): 740. 24. “Download Your State’s Advance Directives,” National Hospice and Palliative Care Organization, accessed March 15, 2016, http://www.caringinfo.org/i4a/pages/index.cfm?pageid=3289. 25. Gelfand, “Living will statutes,” 741. 26. Ibid., 741. 27. Ibid., 746. 28. A.B. 15, Sess. of 2015 (Cal. 2015)

must be 48 hours between the written request and the prescription. The physician must ensure that the patient has full decision-making capacity and is not impaired by any suspected psychiatric or psychological disorder. Oregon established the diagnosis requirement that two physicians agree death is likely within six months. Washington, Vermont, and California followed suit, requiring the same diagnosis criteria (along with the same criteria for obtaining informed consent as Oregon) in order for patients seeking to consider physicianassisted dying to be eligible to use this end-of-life option. All of the policies in the U.S. currently require a diagnosis of a terminal condition leading to likely death within six months in order for patients to be eligible to request physician-assisted suicide. Problems with Use of “Terminal” Requirement These policies in the U.S. are heavily reliant upon the use of the term “terminal” in order for ill and suffering patients to be able to utilize physician aid-in-dying policies or their own living wills. However, there is no consensus among professionals or state policy makers across various states on what exactly qualifies a person’s condition to be “terminal.” 29 The main issues are that there tends to be a lot of prognostication error, physicians do not agree in terms of what predicted survival length makes a person terminally ill, and the limitations of this autonomy exist when a person is genuinely suffering from a neurodegenerative disorder, such as dementia. Error in Prognostication Prognostication has always been a difficult task for physicians to handle in end-oflife discussions with patients and their families. Patients and their families often seek certainty, but it is nearly impossible to exactly predict the course a disease will take in a specific patient. In a study by Selby et al., they analyzed the pattern of clinician estimates of survival accuracy by a palliative care consult team at a cancer center and and acute care hospital in Toronto. The categories 29. Clodfelter and Adashi, “The Liberty to Die,” 251. 30. Gostin and Roberts, “Physician-Assisted Dying,” 250. 31. Ibid.

that these estimates of survival fell into were less than 24 hours, one to seven days, one to four weeks, one to three months, three to six months, six to twelve months, or longer than 12 months. The majority of the patients which the care team were consulted on were estimated to have 1-3 months left to live or greater than 12 months left to live. The results of this study showed that the likelihood of clinician estimated survival being accurate was much greater if death was supposed to be imminent (if clinicians selected less than 24 hours or one to seven days) when compared to all other time-based prognostication categories. The prognostication category of one to four weeks was significantly more accurate than the other categories of one to three months, three to six months, and six to 12 months. The accuracy of the prognostication category of longer than 12 months was comparable to the accuracy of the one to four weeks category. However, those patients who were estimated to have longer than one week to live were much more likely to survive shorter than their prognosis from the palliative care team. And the category in which survival being shorter than prognosis made up the greatest percentage was for 6-12 months. Given that six months is often used as a standard for hospice and thus various other policies (including physician aid-in-dying and living will), these results clearly suggest that providing such a stringent timeline is problematic given the complexities of time-based prognostication and how most patients who have advanced diseases often do not live as long as the clinician estimated survival times indicate. Several other papers have verified that doctors consistently overestimate the survival of terminally ill patients. Glare et al. (2003) looked at eight studies and found that seven out of eight studies bore results indicating that while clinical123 predictions are useful, they tend to be inaccurate and overestimate the length of time a terminally 34. Ibid., 583. 35. Ibid., 584. 36. Paul Glare et al., “A systematic review of physicians’ survival predictions in terminally ill cancer patients.” BMJ 327 (2003): 196, accessed March 15, 2016, doi:10.1136/bmj.327.7408.195. 37. Ibid., 196-197. 38. Lucas S. Zier et al., “Surrogate Decision Makers’ Responses to Physicians’ Predictions of Medical Futility,” Chest 136 (2009): 113, accessed March 15, 2016, doi: 10.1378/chest.08-2753. 39. Lucas S. Zier et al., “Doubt and belief in physicians’ ability to prognosticate during critical illness: The perspective of surrogate decision makers,” Critical Care Medicine 36 (2008): 23422344, accessed March 15, 2016, doi:10.1097/CCM.0b013e318180ddf9. 32. Debbie Selby et al., “Clinician Accuracy When Estimating Survival Duration: The Role of the Patient’s Performance Status and Time-Based Prognostic Categories.” Journal of Pain and Symptom Management 42 (2011): 581, accessed March 15, 2016, doi:10.1016/j.jpainsymman.2011.01.012. 33. Ibid., 583.

ill cancer patient has left to live. However, their analysis also did indicate that across these studies, clinician predicted time of survival and actual survival were strongly correlated. And while it tends to be often inaccurate and consistently overestimated, clinicians’ prediction of survival time continues to be one of the best predictors of survival. In addition to the statistical analysis that shows that physicians’ time-based predictions of survival often overestimate the actual survival time a terminally-ill patient has, surrogates tend to doubt physicians’ predictions regarding futility and prognostication in general. In one study, a majority (64%) of surrogates did not want to believe the futility predictions of physicians, with some of the main reasons behind that doubt being that these surrogates were skeptical about physicians’ certainty and accuracy in prognosticating and that they needed to see that patients were incapable of recovery, not just be told this by a doctor. Another study found that 88% of participants doubted physicians’ prognostication skills; however, all participants wanted physicians to disclose their prognosis, in spite of whether the prognosis was poor and their belief that doctors were not accurate prognosticators. Therefore, while surrogates do agree that there is a lot of error in prognostication by physicians towards the end of life, they do rely on it for some certainty, indicating that the idea of using physician prognostication estimates should not be entirely abandoned. Rather, based on the statistical error and the feeling from surrogates that these estimates from physicians at the end of life are not reliable, the use of such rigid standards (like the six-month clinician estimated time of survival for terminally ill patients required for physician aid-in-dying policies) should be reconsidered. Physicians Disagree on What Estimated Survival Qualifies a Patient as Being “Terminal” Physicians often poorly estimate how long a terminally ill patient has left to live and have not reached an agreement on what constitutes being in the “terminal” phase of illness. This is important because doctors’ assessments of patients as being “terminally ill” is essential to the discussion of

withdrawing or withholding treatments (particularly treatments considered to be futile). These assessments are involved in the discussions of enacting one’s living will or considering physician aid-in-dying. In the study from Christakis and Iwashyna (1998), they found that 89.9% of the physicians who they surveyed felt that physicians should avoid being too specific when it came to making predictions to patients. In addition to this sentiment, when surveyed about how many weeks each physician felt that a “terminal” patient on average should have left to live, there was substantial variation; the average was 13.5 ± 11.8 weeks, with responses varying from 1 to 75 weeks. Overall, 68.3% of the surveyed physicians thought that “terminal” meant having less than 16 weeks to live (with 28.1% of the overall sample population believing that “terminal” meant having 4 weeks or less to live). And the results from this study also substantiated that more experienced physicians and specialists had shorter times for how long they felt that a terminally ill patient had left to live. Given that there is a substantial occurrence of error in prognostication and that the standard of having a terminal condition is crucial to establishing barriers for living will and physician aid-in-dying policies, it seems incredibly problematic that physicians across various ages, specialties, and levels of expertise all seem to have different ideas of how long a patient has left to live once they deem him or her to be terminal. Given that patients with advanced diseases are at risk of having their suffering prolonged if they are unable to meet this seemingly arbitrary criteria, it will be important to standardize how the terminal phase of an advanced disease is defined across different types of physicians. Increased Suffering at the End-of-Life Due to 1 Narrow Definitions of Terminal Conditions In addition to error in physician prognostication and the lack of consensus amongst physicians in regards to what amount of survival time left would indicate that a patient is in the 40. Nicholas A. Christakis and Theodore J. Iwashyna, “Attitude and Self-Reported Practice Regarding Prognostication in a National Sample of Internists,” Arch Intern Med 158 (1998): 2391, accessed March 15, 2016, doi:10.1001/archinte.158.21.2389. 41. Ibid., 2393. 42. Ibid., 2393. 43. Ibid., 2394. 44. Oreofe O. Odejide, “A Policy Prescription for Hospice Care,” JAMA 315 (2016): 257, accessed March 15, 2016, doi:10.1001/jama.2015.18424. 45. Ibid., 257.

terminal phase of their advanced disease, there are serious ethical problems that can arise from holding back those who many would see as being terminally ill who are clearly suffering and want relief from their rapidly degenerative illness. These tight regulations written into physicianassisted dying policies in the U.S. deny patients the option to control their dying and relieve their suffering. The major issue is that quality of life at the end-of-life tends to be incredibly poor in the U.S. The limitations of policies with a terminal diagnosis requirement (such as those that qualify a patient for hospice care in the U.S.) only tend to make this issue worse. The limitations of hospice coverage for Medicare only allow for 180 days (approximately six months) or two periods of 90 days of hospice coverage. This was implemented as part of the Medicare Hospice Benefit that was created by Congress in 1982 as an expansion of Part A of Medicare—Title XVIII Part A of the Social Security Act. However, in order to control the costs of expanding this benefit, along with the requirement of a life expectancy of six months or less, these individuals had to be willing to forego any curative treatments of their underlying advanced disease. Similar to the living will and physician aid-in-dying policies, this creates a barrier to entry for many patients. And this barrier to entry is detrimental to the quality of care at the end of life for these terminally ill patients. For example, if a 66-year-old patient with a myelodysplastic syndrome needs transfusions to alleviate cytopenias, giving up these transfusions for hospice (since they are considered to be a curative intervention that is not solely for comfort care) could likely be severely detrimental to the patient’s quality of life. Because of the poor quality of life for these terminally ill patients, it is important to reassess what is “terminal” and how and how those standards are applied in order to relieve suffering and provide adequate support for quality of life when nearing death. The Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT) was a study designed around the idea of the likelihood of 6-month survival throughout 6 months for a patient and understanding patients’ wishes and to improve the quality of life for these patients. Results from this study revealed that the approximation of how many patients would survive six months was greater than

how many patients actually survived six months (52% vs. 48%). In addition to this finding, “surrogates indicated that 50% of all conscious Phase I patients who died in the hospital experienced moderate or severe pain at least half the time during their last 3 days of life.” Based on this and several other problematic findings from the terminally ill patients in Phase I, interventions were brought in order to establish better care for terminally ill patients. However, even with “improved information, enhanced conversation, and an explicit effort to encourage use of outcome data and preferences in decision making,” there was absolutely no positive change in outcomes. Basically, this study showed that the dying of critically ill patients continues to be incredibly ugly, painful, and poorly managed. Those Suffering from Some Conditions Are Left Out from Being Able to Use These Policies in the U.S. with Physician Aid-in-Dying: Looking at Dementia Dementia patients and patients with other neurodegenerative conditions often have a more unclear terminal phase of illness that may exclude them from having the autonomy to use these policies at the end of their lives. Because the sequence and severity of mental and physical symptoms that manifest vary from each person and each subtype of dementia, patients end up needing a high level of care and often die in hospitals or nursing homes. While there are now many symptomatic pharmacological and psychosocial interventions that can slow the progression of dementia, there is no known cure. And because there are people with “dementia whose suffering cannot be alleviated even with optimal medical treatment and psychosocial care,” the argument has been made that these people can meet the criteria of unbearable suffering due to them being “painful witnesses to the inevitable loss of their intellectual capabilities and… [being] wholly dependent on others for help” in the future. This has led to profound global effects; it has enabled patients in the Netherlands with primary dementia diseases to utilize physician-assisted suicide, with a total of 25 cases of euthanasia or assisted dying being reported 1 to regional euthanasia review committees in 2010. 46. Ibid., 257. 47. The SUPPORT Principal Investigators, “A Controlled Trial to Improve Care for Seriously Ill Hospitalized Patients. The Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT),” JAMA 274 (1995): 1593-1594, accessed March 15, 2016, doi:10.1001/ jama.274.20.1591. 48. Ibid., 1594. 49. Ibid., 1596.

But since the Netherlands has fewer barriers to allow patients to utilize aid-in-dying options, all of these patients were at “a very early stage of the disease and were still competent to make autonomous decisions at the time of their death.” Based on the language of the policies currently in place in the U.S., this would likely fall outside of the predicted 6 months of life remaining diagnosis requirement in order for patients to utilize physician aid-in-dying. For the group of dementia patients who may wish to use physician aid-in-dying to control the process of their dying, the narrow terminal diagnosis definition needed sets the bar so high that it is unattainable for these patients. How Quality of Life at End of Life Improves When Criteria for Hospice or Terminal Condition Are Expanded There is clear evidence that quality of life at the end of life (perhaps not in the context of living wills and physician aid-in-dying, but particularly in hospice) is improved when criteria for what can be covered as a patient in a terminal phase of an advanced illness is expanded. For example, a study from researchers predominantly working for Aetna (a health insurance company) initiated a trial that applied a comprehensive case management program and expanded the criteria to qualify for hospice benefits in a group of patients in the study. The predominant variable studied in this study was whether case management improved outcomes, so effective hospice care use and expanded benefits were not studied alone. In the study, Spettell et al. (2009) found that those in the enhanced benefits case management group spent more days in hospice, had a lower percentage of those in the group with an Intensive Care Unit (ICU) stay, had fewer acute inpatient days, had a lower percentage of patients in the group with an acute inpatient stay, and used hospice at a much greater rate than those without case management (830). Aetna, in 2005, expanded hospice benefits for patients with advanced illness by extending the definition of terminal illness from 6 months to 12 months. They also allowed for patients 1to continue to get some types of curative treatments 50. Jakov Gather and Jochen Vollmann, “Physician-assisted suicide of patients with dementia. A medical ethical analysis with a special focus on patient autonomy.” International Journal of Law and Psychiatry 36 (2013): 446, accessed March 15, 2016, doi:10.1016/j.ijlp.2013.06.016 51. Ibid.

(antineoplastic treatment) with their hospice services. The results of this trial suggested that “the additional services provided effective symptom management in the home setting, reducing the need for acute care in emergency departments and hospitals.” In 2014, the Centers for Medicare and Medicaid Services (CMS) announced that they would run a similar trial, with an expansion of coverage to include “concurrent disease-directed care” with hospice care for Medicare beneficiaries with life-limiting illnesses. At least when applied to expanding the definition of terminally ill for hospice care, prior pilot programs have suggested that the expansion leads to the improvement of end-of-life care and may offer a perspective to reassess the definition of terminal illness in living wills and physician aid-in-dying policies in the future.

life over the course of years. Patients diagnosed with ALS experience gradual progressive degeneration of motor neurons, with the presentation of limb weakness, respiratory failure, and bulbar palsy, with most patients dying

The Netherlands—the Slippery Slope the U.S. Is Trying to Avoid The model that the U.S. is trying to avoid by establishing a terminal diagnosis (6-month) boundary is current system in the Netherlands. There is no public debate surrounding the general idea of physician-assisted suicide or euthanasia, and it is considered to be widely accepted. Physician-assisted dying in the Netherlands has been integrated in the country since the 1980s, with the Royal Dutch Society for the Advancement of Medicine (RDSM) beginning their internal debate on physician-assisted dying in 1973 and coming out in favor of the potential of physician-assisted dying in 1984. While this position was accepted in the 1980s, a law was not enacted until 2002. This law, titled Review Procedures for the Termination of Life on Request and Assisted Suicide and Amendment of the Criminal Code and the Burial and Cremation Act, established that “active help in dying may still be a crime, unless the intervention is carried out by a physician who has to report the act and will be evaluated on the basis of the conditions of the law.” Yet in previous cases of physicians involved in ending their patients’ lives brought to criminal proceedings, the physician-assisted dying has not been projected as “a criminal act, as murder.” Some patients, such as those with Amyotrophic Lateral Sclero1 sis (ALS) experience a decline in perceived quality of 52. Ibid. 53. Ibid., 445. 54. Ibid. 55. Claire M. Spettell et al., “A Comprehensive Case Management Program to Improve Palliative Care.” Journal of Palliative Medicine 12 (2009): 830, accessed March 15, 2016, doi: 10.1089/ jpm.2009.0089.

1 56. Odejide, “A Policy Prescription,” 257-258. 57. Ibid., 258. 58. G.K. Kimsma, “Death by request in The Netherlands: facts, the legal context and effects on physicians, patients and families.” Med Health Care and Philos 13 (2010): 355, accessed March 15, 2016, doi: 10.1007/s11019-010-9265-0. 59. Ibid., 356. 60. Ibid., 356. 61. Ibid., 355.

within five years after the onset of the disease due to respiratory insufficiency. Therefore, a patient with ALS may wish early on in the progression of their disease to control their dying process, even though the time-dependent condition of the prognosis may disqualify them from doing so. However, it can be argued that for patients with ALS in the Netherlands, aid-in-dying may be promoted too frequently over proper and aggressive palliative therapies to manage symptoms. While 5% of patients in Oregon with ALS requested lethal prescriptions, 20% of all patients with ALS in the Netherlands actually die as a result of life-shortening measures (such as euthanasia). This may reflect a troublingly poor quality and low availability of palliative care available for patients with ALS in the Netherlands, which is leading to this high level of interest in euthanasia in the Netherlands. Within the Netherlands, there has been an increase in the percentage of medical decisions that can shorten life. Kimsma (2015) uses the term ‘medicide’ to encompass euthanasia, physician-assisted suicide, non-treatment decisions, and pain and suffering relief measures that are known to potentially shorten one’s life. The term medicide also includes palliative sedation and “life-ending actions without an explicit request.” In 1990, the percentage of all medical decisions that could be deemed to be medicide was 39.7%. In 2010, this percentage went up to 68.2% and 57.1% without the inclusion of the category of palliative sedation. And based on the information available, these high percentages are not because the disease characteristics of patients in the Netherlands are worse than previously reported or compared to other countries. There has also been increasing use of euthanasia by patients with afflictions that may impede them from having decision-making capacity. While the percentage of euthanasia cases in the Netherlands has remained mostly stable and only made up between 1.7% to 2.8% of all deaths in the country from 1998 to 2010, the types of diseases or justifications for requesting euthanasia that have qualified to be acceptable under the euthanasia law have expanded. The number of patients who have ended their lives with the primary ailment of Alzheimer’s disease has increased since 2010. In addition to this trend, there has also been a trend suggesting an increase in the number of chronic psychiatric

patients who utilize euthanasia in The Netherlands. Starting in 2013, the category of a “combination of afflictions,” which had been increasing as well since 2010, changed in description to “multiple complaints of the elderly.” Researchers in the Netherlands found in 2005 that weariness of life was an important consideration in requesting euthanasia, regardless of whether the person was suffering from a disease. Especially with regards to Alzheimer’s and psychiatric patients, the issue of potential lack of competence in these patients makes the use of physician aid-in-dying ethically and morally problematic. Another issue in the Netherlands is that patients who are refused euthanasia by their physicians may resort to suicide or even laicide. Kimsma (2015) defines the term ‘laicide’ as the “involvement of non-physicians: laymen or layperson, in realizing the death of an individual.” Dr. Chabot, a psychiatrist, uncovered the relatively hidden practice of passive suicide, when patients intentionally stop eating and drinking or overdose on certain medications. Prior to 2007, there was no information on how widespread this practice was. However, the information known now can be seen as being incredibly troublesome, particularly for those in the U.S. who are reluctant to legalize physician-assisted dying and even more reluctant to liberalize physician-assisted suicide policies in the U.S. Six out of ten patients who took matters into their own hands were denied help in dying by their physicians. Four out of ten made these decisions without ever consulting a medical caregiver. With the lack of physician-assisted dying as a legal option in the U.S., there could be an even higher rate of laicide that is hidden behind un collected data on such practices. While it is true that suicides cannot be prevented in some cases, regardless of whether 1 the person is in the Netherlands or in the U.S., this desire to be relieved of the burdens of terminal cancer, psychiatric diseases, or simply being tired of life 62. Maud Maessen et al., “Euthanasia and physician-assisted suicide in amyotrophic lateral sclerosis: A prospective study.” J Neurol 261 (2014): 1894-1895, accessed March 15, 2016, doi: 10.1007/ s00415-014-7424-6. 63. Dorothee Lulé et al., “Live and let die: Existential decision processes in a fatal disease.” J Neurol 261 (2014): 518, accessed March 15, 2016, doi: 10.1007/s00415-013-7229-z. 64. G.K Kimsma, “Ethical Issues of the Practice of ‘Medicide, Suicide and Laicide’ in The Netherlands after the Euthanasia Law of 2002.” J Clinic Res Bioeth 6 (2015): 250, accessed March 15, 2016, doi:10.4172/2155-9627.1000250. 65. Ibid. 66. Ibid 67. Ibid. 68. Ibid. 69. Ibid. 70. Ibid. 71. Ibid. 72. Ibid. 73. Ibid. 74. Ibid.

has also led to the dangerous role of laicide within the discussion and use of euthanasia within the Netherlands. Laicide is another category of euthanasia within the Netherlands that would be viewed as being problematic from the perspective of those who wish to have physician aid in dying legalized yet strictly regulated within the U.S. in order to avoid the slippery slope. This can be incredibly ethically problematic because unlike with properly regulated physician-assisted dying, there are no evaluations of competency, no assessments of untreated psychiatric illnesses, and no clear ways to ensure that coercion of patients (often elderly people) is not occurring. For example, one civil initiative introduced to the Dutch Parliament in 2010 basically proposed to allow elderly people over seventy years of age to choose to die after consulting non-medical helpers for dying. While the Dutch Parliament ultimately decided not to act on this proposal, the image of this being something that is possible concerns those who are against or uncertain about relaxing the eligibility criteria for aid-in-dying policies or living will policies in the U.S. However, given that any potential practice of laicide is not public in the U.S., legalizing physician-assisted dying could actually reduce the problems associated with unregulated laicide that may be occurring. Public debate stimulated by societies in the Netherlands in favor of even more liberal physician-assisted dying policies has strived for the allowance for those who are weary of life to use physician aid-in-dying. The Royal Dutch Medical Association in 2011 stated that this type of suffering due to a lack of meaning in life can be part of the medical domain and the legal framework to interpret suffering is wide and ambiguous. The regional euthanasia review committees, which physicians must report each case of assisted dying to, only approve of fulfilled euthanasia requests for tiredness of life if the patient has a medical disorder tied to this sentiment. In general, explicit requests for euthanasia based on complaints associated with a psychiatric disease were never granted in one study. However, approximately 1% of requests based on weariness of life were granted. Given that this sort of suffering is not directly affiliated with a severe disease and may reflect some underlying depression or other mental health issue, providing euthanasia for anyone who requests it on

the basis of weariness of life (even as low as 1% of requests) is problematic in terms of verifying the capacity of a patient to make this decision and the lack of weighing of alternatives in order to ensure voluntariness and this can lead to the slippery slope being in full effect. However, the Netherlands has not reached the point of the slippery slope being entirely in effect, as patient advocates or policy makers in the U.S. may fear. While there may be no public debate about the acceptance of physician-assisted suicide or euthanasia in general, there is public debate about the competency of individuals. Specifically, this includes demented patients, mentally ill patients, and those who want to utilize euthanasia or physician-assisted suicide when they are simply weary of life. A study from Norwood, Kimsma, and Battin (2009) aimed to examine the practices that surround euthanasia in the Netherlands, with an emphasis placed on vulnerable patients, through observation and interviews with general practitioners. The results of this study indicated that there were “no instances of termination of life without explicit request by patients capable of communicating.” The researchers also observed that most general practitioners were not comfortable with euthanasia requests in patients who were not capable of making decisions and avoided pursuing euthanasia requests in patients with dementia, mental illness, or depression or exhibiting signs of depression. The researchers also found no instances of the use of euthanasia or other modes of hastening death in lieu of pursuing other palliative care options. They conclude that “the euthanasia process most often occurs as an ongoing talk and not simply as a life-ending act,” which is evidence against the idea that euthanasia is abused in the Netherlands. In addition to this finding, like in the U.S., most patients in the Netherlands who discuss euthanasia with their physicians ultimately do not end up dying 1by euthanasia or assisted suicide. Norwood, Kimsma, 75. Ibid. 76. Jacob J.E. Koopman and Theo A. Boer, “Turning Points in the Conception and Regulation of Physician-Assisted Dying in the Netherlands,” The American Journal of Medicine 129 (2016): 774, accessed December 23, 2016, doi: 10.1016/j.amjmed.2016.02.025. 77. Ibid. 78. Ibid. 79. Mette L. Rurup et al., “Requests for euthanasia or physician-assisted suicide from older persons who do not have a severe disease: An interview study,” Psychol Med 35 (2005): 667, accessed March 15, 2016, doi:10.1017/S003329170400399X. 80. Ibid. 81. Frances Norwood, Gerrit Kimsma, and Margaret P. Battin, “Vulnerability and the ‘slippery slope’ at the end-of-life: A qualitative study of euthanasia, general practice and home death in The Netherlands,” Family Practice 26 (2009): 472-473, accessed March 15, 2016, doi:10.1093/fampra/ cmp065. 82. Ibid., 475. 83. Ibid., 476. 84. Ibid.

and Battin (2001) report that only one in ten who initiated a request for euthanasia with their physicians ended up dying via euthanasia, and less than 40% of patients who made serious requests prompted by a diagnosis of a life-threatening illness died by euthanasia or assisted suicide. Within the realm of physician-assisted dying, not laicide or suicide, there does not appear to be a slippery slope in the Netherlands. However, the problem of laicide and suicide in the Netherlands may exacerbate unless the perceptions of unbearable suffering in patients and physicians are reconciled. The concept of unbearable suffering that is required in order for a person to be eligible for euthanasia in the Netherlands is ambiguous and can lead to discrepancies in the perception of suffering by the physician as compared to the patient themselves. The Royal Dutch Medical Association, the regional euthanasia review committees, and case law in the Netherlands have indicated that unbearable suffering encompasses more than physical suffering and that the physician must be able to recognize that the suffering is unbearable for the patient, but the patient’s personal judgment is also important to consider in this assessment. Patients tend to put more emphasis on psychosocial suffering; this includes dependence, deterioration, and loss of the ability to participate in things they enjoy in life anymore. Physicians are more dependent on physical suffering for forming their concept of unbearable suffering. Once these discrepancies in perceptions are relieved through conversation between patients and their physicians, the use of suicide or laicide after a request for medicide is rejected may decrease. However, these policies in any country will never be foolproof. There will always be individuals who are able to act outside the scope of the regulations of these policies in order to fulfill their desired objective. Conclusion The ethical issues associated with living will and physician aid-in-dying policies in the U.S. are largely due to the narrow definition for terminal condition requirements, but the ethical dilemmas that arise from these policies also have to be considered in the context of the political environment. While a precise criterion may protect patients who change their minds given alternative palliative treatments or

those who may not be making a fully autonomous decision, there are many problems with such a strict barrier to entry. Because physicians tend to overestimate survival when prognosticating and often are inaccurate, those who may actually have six months or less to live can be unjustly left out of this option to control their dying and potentially relieve their own suffering. In addition to this problem, physicians often disagree on what estimated survival time for patients with advanced diseases makes someone terminally ill. These strict criteria in the U.S. also leave out those with neurodegenerative disorders, such as dementia, which may lead to the same amount of suffering and prolonged dying as an illness like cancer and over even longer periods of a time, who may lack decision making capacity and lose their ability to make voluntary and autonomous decisions once they are predicted to have six months left to live. It is understandable that the policies laid out for living wills and physician-assisted dying in the U.S. have rigid requirements that can create many barriers to use. Policy makers and everyone else invested in making physician-assisted dying legal in the U.S. want to avoid the slippery slope that would be assuming the current situation in the Netherlands. However, given that the Netherlands takes a much more liberal approach to these issues in the political context, it is unlikely that the U.S. could ever approach a similar situation with the widespread use of physician-assisted dying. Even in Oregon, where the practice has been occurring for nearly 20 years, less than 0.5% of deaths result from the practice of physician aid-in-dying. The barriers established are very stringent. The extensive process of actually getting the prescription for the lethal drug for physician-assisted suicide can prevent the slippery slope from becoming a reality in the U.S. It is much more likely that the policies in the U.S. (based on this Oregon policy) will exclude those who may benefit from 1this option rather than encompass too many people and become widely abused. Thus a narrow diagnosis requirement of death within six months should be carefully reconsidered in regards to its ethical merit. Society must determine whether the strict criterion prevents a move toward the slippery slope or impe85. Ibid., 478. 86. Ibid. 87. H.R.W. Pasman et al., “Concept of unbearable suffering in context of ungranted requests for euthanasia: Qualitative interviews with patients and physicians,” BMJ 339 (2009): b4362, accessed March 15, 2016, doi:10.1136/bmj.b4362. 88. Ibid. 89. Orentlicher et al., “The Changing Legal Climate,” 1962.

des the autonomy and dignity of the severely ill, who wish to have control over their dying. Given that these policies have been adopted in the U.S. in order to relieve the suffering of those afflicted with severe and ultimately irreversible diseases; bioethicists, physicians, and others involved in the development of these policies must reassess the terminal criteria for eligibility and/or improve the options for hospice and palliation at the end of life with a terminal illness.

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WHICH IS WHICH: AN ANALYSIS OF AMBIGUOUS GENITALIA AND CROSS CULTURAL BIOETHICS ESTHER ANTWIWAA-BONSU University of Virginia Alumnus

ABSTRACT In this paper, I take a narrative approach to discussing bioethical principles about intersex disorders, first presented by Hugh Hampton Young, to examine a case study on the topic. I start by dissecting the difference between sex and gender in order to provide context for the principal case. By illustrating a clinic appointment, I begin to explain how intersex disorders often times mix conversations about gender identity, gender dysmorphia, and biology. I also discuss how the U.S. and the U.K. would approach the aforementioned clinical situation, while offering a recommendation I would make to the patient based on both of the countries’ approaches.

If you would imagine the most noticeable feature

on a person, perhaps you would invision a dazzling smile, lustrous hair, or superior athletic ability. Yet, to the world, our most noticeable feature is one that does not differentiate us, a feature in which none of us had any say in. It’s a feature that was determined at or prior to birth: are you female or male? Tey Meadows, in a lecture on “Being a Gender,” notes that the sociological rendering of the term “gender” deals with the relationships between women and men, amongst women, and amongst men within their social groups (2017). Gender is a “property that is intersubjective and mutable in many cases because it is also an institution, broken down into three categories.” The three categories, bodies, identities, and behavior, represent the many ways that gender pervades our world. As our gender describes our bodies, defines our identities, and manipulates our behaviors, it becomes easier for others to use our visual gender identities to judge and exclude one another. For Meadows, gender is not an appropriate descriptive word. Often, those using the term “gender” do not understand that gender is an assignation of personal identity and that it is a feature of the self. The medical community’s and society’s acknowledgement that the symbolic category of gender identity and the sense of self is not aligned with the body is relatively new. As physicians wrestled with the psychosocial ramifications of having “intersex” children, Heather Looy & Hessel III Bouma note that “doctors believed that they could surgically normalise the genitalia, allowing parents to rear their children in the corresponding gender, confident that their children would be physically and psychologically comfortable with

their sex and gender.” (2005, 171). Parents likely did not anticipate that the birth of an intersex child, or a category of conditions where reproductive or sexual anatomy do not fit with typical definitions of male and female, prompts a long-term management strategy, which involves a myriad of professionals working with the family (ISNA, 2019). For families that fear having an intersex child, Archive of Disease in Childhood published a study about the management of intersex disorders. It was estimated that the prevalence of newborns with genital anomalies is only about 1 in 4500 births (Hughes 2005, 554-563). The terminology for intersex in the medical community is now a part of a class of disorders called disorders of sexual differentiation (DSD). The designation of DSD considers “developments in molecular genetics, ethical issues, and the perception of existing terms as potentially pejorative” (Chavhan et al 2008, 1891-1904). The most studied DSD case, with regards to sexual differentiation or the lack thereof, is congenital adrenal hyperplasia (CAH). CAH is estimated to occur in “approximately 1 in 5,000 to 1 in 15,000 births in Europe and North America” (Hines 2011, 170-182). Since CAH is an autosomal recessive disorder, its prevalence is limited. However, out of of the documented cases, about 95% of them were caused by mutations in the CYP21A2 gene that encodes the enzyme, 21-hydroxylase (21-OH). 21-OH is integral in regulating adrenal androgens, so female fetuses diagnosed with CAH are born with some degree of virilisation, or development of male physical characteristics (Hines 2011). While the medical community conducted research on genetic disorders linked to ambiguous genitalia, an underlying ethical question grew: do parents have the moral right to provide informed consent to surgically alter the ambiguous genitalia of their infants born with disorders of sex development/differentiation? Or should parents wait until the child has a proper sense of gender identity before any procedures? Because DSD is so rare, I did not expect to have an intersex/ambiguous genitalia case unfold during my first couple of weeks at the Fetal Care Center. Angela Holloway, 41, was pregnant with twins when her doctors noticed an anomaly in her ultrasound. Sometime during the first trimester, doctors typically

â&#x20AC;&#x153; ...do parents have the moral right to provide informed consent to surgically alter the ambiguous genitalia of their infants born with disorders of sex development/ differentiation? â&#x20AC;? 56 Illustration by Nandita Venkataraman

recommend that the mother gets an ultrasound to first confirm her pregnancy is viable and then to determine the sex of the child, if the family wishes. Mrs. Holloway’s predicament was a bit peculiar. At eight weeks, Mrs. Holloway underwent an abdominal ultrasound imaging, which produced standard results. Her ultrasound showed a twin gestation and fetal poles. The term “fetal pole”refers to the developing fetus when it first becomes visible in the gestational sac on an early pregnancy ultrasound (American Pregnancy Association 2017). Because a fetal pole is among the first signs of a viable pregnancy, the presence of a fetal pole in a second gestational sac is a marker of a healthy pregnancy. However, Holloway’s second ultrasound two weeks later showed no further development in one of the gestational sacs. Holloway’s doctors referred her to a genetic counselor, a specialist who discloses sensitive information pertaining to genetics to pregnant women. While waiting to hear her options, Mrs. Holloway sat in a room where the decor did nothing to disguise the thick lump of anxiety forming in her throat. A pleasantly dressed woman sat in the chair directly in front of her with a pen, poised to write. Underneath the woman’s hand was a blank sheet of paper, with Mrs. Holloway’s name, age, and number printed in the right-hand corner. At any moment, the pen would fly across the paper, filling with patient details about their family history of diseases, disguised as lines and squares and circles. These same lines, squares, and circles were integral to the genetic counselor profession because they denote a patient’s family tree or pedigree. Once a pedigree is drawn, “all decisions about genetic screening or genetic testing is made in the context of the patient’s full family history” (Hoskovec 2015). As Mrs. Holloway sat on a too comfortable blue couch, she began to answer the questions Molly, the genetic counselor, asked. Yes, her mother and father were alive. No, she did not have a history of Down Syndrome or Turner’s Syndrome in her family. No, she was not of Jewish descent and neither was her baby’s father. Throughout the questioning, no line or circle or square was left undrawn. However, Mrs. Holloway still shifted uneasily on the couch, wondering how this pedigree would negatively impact her. Perhaps the reason she was at the

Fetal Care Center in the Battle Building of the University of Virginia Health System was due to more than poorly developing fetal poles in two gestational sacs. She waited. Molly smiled again before presenting the facts, probably knowing that her words alone held the power to either absolve all of Mrs. Holloways fears or fuel them.

... Her first abdominal ultrasound results were inconclusive, two gestational sacs were forming, but only one had a fetal pole. The second test, at ten weeks, showed that Mrs. Holloway no longer carried twins. The ultrasound detected remnants of the second sac, but it appeared to have been re-absorbed, suggesting the demise of the co-twin. Although the death of a co-twin occurs in about 4% of monochorionic placentations, or twins that share one amniotic sac, Mrs. Holloway’s twins were dichorionic twins (Whittle 2002, 17-20). The risk of co-twin demises for monochorionic twins is higher than dichorionic ones, but research is inconclusive for why this happened for Mrs. Holloway’s case. Researchers knew there was a discrepancy between the findings from the non-invasive prenatal test and the ultrasound. However, the sex of the baby was not determined in the second ultrasound, because in place of genitalia there were just three little bumps. There are several treatment options for women in this situation and Mollysuggested Mrs. Holloway undergo an amniocentesis, an invasive prenatal cytogenetic test for chromosome abnormalities, neural tube defects, and genetic disorders (Mayo Medical Laboratories 2017). Before the 1990s, clinicians in the United States made the final decision on intersex infants by running tests to determine which chromosomes the child had. XY chromosomes denoted male, while XX was female. Clinicians also examined the genitals of the infants when chromosome tests yielded inconclusive results. Alice Dreger, while writing for the Intersex Society of North America, states historically there have been two models in which discussions about intersex infants occur. The first is the concealment-centered model, where DSD is viewed as a rare abnormality, thought to bring great distress for both the person with the intersex condition and the

parents (1999). Pioneered by John Money, this model explained that gender is malleable in the first 18 months of life because “from very early in life children’s anatomy must match the “standard” anatomy for their gender and that boys primarily require “adequate” penises with no vagina, while girls require a vagina with no easily noticeable phallus (1999, 26). Unfortunately for most intersex boys, the designation of female is placed on them because crafting a vagina – just a hole that a penis can fit into – is easier (Dreger 2003). Money’s concealment-centered model advised parents and clinicians to shroud the patient’s condition in secrecy because knowledge may lead to gender confusion, a condition that the gender reassignment surgeries work to avoid. So how does Mrs. Holloway proceed, knowing that at 22 weeks she is about to hit the deadline on viable terminations, and that her decision would determine the child’s sex? Fortunately for medical science and social advocates for intersex cases, this model has largely been replaced in America with the patient-centered model. In the patient-centered model, intersex is defined as a relatively common anatomical variation from standard male and female types. Parents are encouraged to seek psychosocial support and as much information as possible. Research finds that patients wanted more information about their illnesses and options, despite the common perception that telling patients about their options only serves to increase their anxiety and may even dissuade them from undergoing one of the treatments (Khan and Laxmi 2013; Dawes and Davison 1994). Children are also given choices when it comes to the medical response. Most clinicians of this model acknowledge that children are not as naive as some adults like to believe. They are aware when adults are lying to them, especially when concerning their health. Advocates for intersex children in North America champion informed consent. Informed consent requires professionals to obtain legally/institutionally valid agreements from patients before proceeding with diagnostic/therapeutic procedures. For consent to be informed and granted, patients must fully understand the procedure by having the procedure clearly disclosed to them. Once those conditions are satisfied, the patients can give proper approval.

Along with informed consent, patients and parents of intersex children should have the right to informed refusal, argues Dr. Julie Cantor, in an article published in the New England Journal of Medicine (2012). In that same article, Dr. Cantor wrote that competent adult women’s rights should not be diminished just because they are pregnant. She details a situation where a mother’s right to refuse treatment was ignored by the attending physicians due to a court order (2012). The court order argued that the state has a strong interest in fetal well-being and therefore women have special obligations to fetuses when they choose to carry them to term. Physicians should discuss and revisit the risks, benefits, and alternatives of recommended care as well as adequately document an informed refusal. “Forced interventions undermine the liberty, privacy, and equality of pregnant women” (Cantor 2012). Per the U.S. assessment on DSD, Mrs. Holloway has the right to refuse care in the hopes of allowing her child informed consent. Her clinicians, acting ethically, should offer as much information on her child’s condition as feasible. Each interested party should feel that their best interest is being considered and prioritized. But how would another country evaluate Mrs. Holloway’s case? Questions of what is medically and ethically appropriate for cases of DSD calls for delicacy, while inciting controversy. Catherine Minto, a United Kingdom based physician, conducted a study where she found that feminizing a child by doing clitoral surgery may lead to a lifetime of sexual problems. The current protocol is to raise the child female and use surgery to remove “excess tissue,” or in some cases crafting genitalia (2003). Following these protocols, however, often results in little support, education, therapy, or counseling for parents, who are not well versed on raising a child with intersex conditions. Minto urges parents to wait for the birth of the child before any decisions are made about the child’s genitalia. Waiting for puberty, at the earliest, Ahmed et al. (2011) reports, proves more ethically favorable. As the child grows, their conception of gender identity develops, so it is imperative that clinicians and parents allow them the time to explore those concepts. Along with time, Ahmed et al. (2011) shows that clinicians and parents should always tell the truth

to their clients and children, respectively, in order to increase the likelihood of successful outcomes, especially during the initial evaluation of DSD.

... Drawing upon Immanuel Kant when considering the issue of truth telling in cases of DSD, there is a “categorical imperative” from which our various moral duties derive (Bennett-Woods 2005, 20). The imperative impresses that reason, above all else, is what our moral principles should rely on, rather than on the inclinations of social desires, status, etc; the duty of veracity, or the principle of truth telling, is unconditional. Violating a child’s self-determination, by electing surgeries in infancy, is to treat them as less than a person and infringe on the individual’s autonomy. David DeGrazia, Thomas Mappes, and Jane Zembaty describe three modes of autonomy in their book detailing biomedical ethics. Their work describes autonomy as freedom of choice, liberty of action, and effective deliberation (2011). Clearly providing the full range of choices for the parents and the child would be the most ethical thing to do, according to the U.K. and U.S. recommendations for intersex cases. In Mrs. Holloway’s case, and many other ambiguous genitalia cases, at what time is it appropriate for the relevant parties to decide on a course of action? Moreover, how would their decisions impact the baby and its future development? These questions came up while discussing this topic with Molly during one of our clinic days. She explained how these cases not only affect the parents, but also the clinicians who first discover the anomalies. Disclosure is a chief concern of clinicians in ambiguous genitalia cases. If a clinician discloses too much or not enough information, the pregnant woman may be negatively impacted. In a “well-controlled human study,” researchers found “that pregnant women with high stress and anxiety levels are at [an] increased risk for spontaneous abortion and preterm labour and for having a malformed or growth-retarded baby (reduced head circumference)” (Mulder et al. 2002). Mrs. Holloway wanted to avoid putting additional stress on the developing fetus in an attempt to avoid any other birth defects.

Clinicians often inform parents that societal pressures may have to be considered in decision-making as well as the baby’s wishes, especially when they can understand and exercise informed consent. Although it is impossible to discern how the baby will perceive their gender, Molly urges parents to wait until the baby is born. She advises that immediately after birth, the family should see a pediatric endocrinologist, who specializes in the diagnosis and treatment of children with diseases of the endocrine system, such as growth disorders or hormone deficiencies (Kids Health 2017). Pediatric endocrinologists would properly diagnosis the baby for any disorder of the endocrine system that may have caused the ambiguity of the genitalia. Additionally, Molly recommends that the family seek psychiatric help if they feel troubled about the impending decisions. Undergoing gender assignment is not merely a single procedure, but a process involving multiple surgeries and hormone therapies. Gender reassignment surgeries are grueling and painful, especially since they persist as the child ages. As a result of this, parents should consider the biomedical ethics principle of nonmaleficence in their decision-making. Nonmaleficence prohibits the infliction of harm, injury, or death upon others. Sex reassignment surgeries have lasting consequences to the baby, both physical and emotional. No one can properly discern how, if at all, the child will be affected, but the best course of action would be to wait and assess when the child is of age, sometime during puberty. In speaking with Molly, I could not help to think about how I would personally address an intersex case. Like Mrs. Holloway, I was troubled to hear about the ambiguous nature of her fetus genitalia, but I am not entirely convinced ultrasound imaging is a “catch-all” technology on which decisions should hinge. Like Molly, I would recommend that Mrs. Holloway have an amniocentesis and a rapid FISH, or Fluorescent in Situ Hybridisation test. FISH “is a rapid method for counting the number of certain chromosomes within [the] cell” (Women and Children’s Health Network 2016). Rapid FISH results offer quick reassurance for parents, especially if there is anxiety due to an abnormal ultrasound. Hopefully these prenatal tests would assuage some of Mrs. Holloway’s concern.

After prenatal tests, there is not much clinicians can do apart from hormone therapies. Because of this, I would recommend Mrs. Holloway wait until the birth of her baby before making any decisions. If she wants to explore termination as an option, I would present her with all available information and options, but also notify her of UVA Health System policies regarding this matter. A referral from a genetic counselor would be made if she decides to terminate after the 22-week mark of her pregnancy. As a bioethicist, I would respect Mrs. Holloway’s autonomy and right to make her own informed decisions. After the birth of her child, I would present Mrs. Holloway with the following courses of action: wait until the child has established a semblance of gender identity and allow the child to make their own choice on sex reassignment surgery, ideally when the child is undergoing puberty, or visit a trusted endocrinologist who could better diagnosis the disease and offer further options. The key word is trusted, because per an intersex advocacy group online, “many endocrinologists press unnecessary--sometimes devastating--”normalizing” hormone treatments on patients who are otherwise healthy” (Isna FAQ 2017). Intersex groups also believe that many “doctors continue constructing vaginas in infants and young children, despite arguments by many medical professionals that early vaginoplasties fail too often and are unnecessary to begin with” (2017). Listening to the opinions of advocacy groups are important for making informed decisions, because these groups are influential in focusing research on an issue of great concern and providing voices for those who are not being heard. If the ambiguous genitalia case turns out to be one where a sex reassignment surgery is recommended or hormone therapies are prescribed, I would recommend that Mrs. Holloway wait until her child comes to a decision on their own, rather than a rash decision by grieving parents. Jennifer Lerner and George Lowenstein discuss in Handbook of Affective Sciences, that the emotions we feel at the time of deciding can impact us in direct and indirect ways (2003). They note that although “people anticipate which decision will result in things like regret, emotional pain,

happiness or pleasure, they still try to select the actions with the most positive emotional outcome” (2003, 636). Grieving parents try to minimize negative emotions, but unknowingly put their wishes and happiness on their child’s sex determination. They want their child to have the easiest time assimilating into society, so they often do not give their child the chance to define their own gender. Additionally, I would consider the ethical principle of beneficence when making recommendations. Beneficence is about minimizing harm for all parties involved and maximizing the benefit, so recommending Mrs. Holloway to wait for the birth of the baby would be in the best interest of all parties. Once the child is born, preserving the well-being of the patient, not just the intersex baby, is the next appropriate step. Kessler explains that chromosome, gonad, hormones, clitoris, reproductive capacity, and penis size – all biological indices for managing intersex – are used based on “cultural understandings of gender” (1990, 4). Because cultural understandings of gender are subjective at best, and stereotypical at worst, it is recommended to wait for the baby to come of age. Allowing the child a full range of choices not only adheres to the ethical principle of beneficence, but also respects their autonomy. Although, traditionally, gender was viewed under strict designations of he/her and man/woman, today the status quo is changing as we see more and more people expand their definition of gender to include non-binary categories such as they/them. Despite the social changes, the need for the medical community, families, and society to “fix” ambiguities in genital development to appease conventional definitions of sex and gender results in a multitude of ethical issues. Mrs. Holloway’s situation provided a perfect study in which the ethical principles of informed consent, respect for autonomy, beneficence, and nonmaleficence could be explored. No one contests that the decision-making process is a difficult one, for both clinicians and patients. Those involved wish to make the best decision possible, but also fear their decision might have negative, lasting consequences. I believe that natal tests would assuage some of Mrs. Holloway’s concern.

“As the child grows, their conception of gender identity develops, so it is imperative that clinicians and parents allow them the time to explore those concepts.” ...

“Violating a child’s self-determination, by electing surgeries in infancy, is to treat them as less than a person and infringe on the individual’s autonomy.”

tive emotions, but unknowingly put their wishes and happiness on their child’s sex determination. They want their child to have the easiest time assimilating into society, so they often do not give their child the chance to define their own gender. Additionally, I would consider the ethical principle of beneficence when making recommendations. Beneficence is about minimizing harm for all parties involved and maximizing the benefit, so recommending Mrs. Holloway to wait for the birth of the baby would be in the best interest of all parties. Once the child is born, preserving the well-being of the patient, not just the intersex baby, is the next appropriate step. Kessler explains that chromosome, gonad, hormones, clitoris, reproductive capacity, and penis size – all biological indices for managing intersex – are used based on “cultural understandings of gender” (1990, 4). Because cultural understandings of gender are subjective at best, and stereotypical at worst, it is recommended to wait for the baby to come of age. Allowing the child a full range of choices not only adheres to the ethical principle of beneficence, but also respects their autonomy. Although, traditionally, gender was viewed under strict designations of he/her and man/woman, today the status quo is changing as we see more and more people expand their definition of gender to include non-binary categories such as they/them. Despite the social changes, the need for the medical community, families, and society to “fix” ambiguities in genital development to appease conventional definitions of sex and gender results in a multitude of ethical issues. Mrs. Holloway’s situation provided a perfect study in which the ethical principles of informed consent, respect for autonomy, beneficence, and nonmaleficence could be explored. No one contests that the decision-making process is a difficult one, for both clinicians and patients. Those involved wish to make the best decision possible, but also fear their decision might have negative, lasting consequences. I believe that the most appropriate decision, in the interest of the most affected party, is the one that corresponds closely to the child’s deepest sense of self as an adult. Therefore, whenever possible, it is important to wait at least until puberty so that the patient can decide for themselves essential qualities such as their gender assignment and the potential for accompanying surgeries. Allowing an ample

amount of time, in which the child can develop their own sense of identity adheres to the biomedical ethics principles of informed consent, respect for autonomy, and nonmaleficence. Since intersex cases present themselves as not only physiological or social issues, but as genetic abnormalities, it is important to offer patients and their families the option of psychiatric help. I reject Money’s claim that gender is malleable and parents must, therefore, “beat the clock” to determine their infants’ sex. In the studies described in this paper, almost all show the benefits of delaying gender assignment surgeries and therapies. Clinicians and advocacy groups in the United States and in the United Kingdom acknowledge the complexity of DSD cases, but are hopeful for the future. Despite the U.S.’s past, in which gender assignation superseded meaningful dialogue, advocates of intersex self-determination have permeated the medical field, allowing for proper ethical considerations to take place. Failure to do so could result in traumas and difficulties with familial relationships. Moreover, previous literature in the U.K. tended to place an emphasis on maintaining stable gender identity, by accepting the medical team’s determination. As technology continues to advance, new avenues for diagnosing and treating patients with DSD become less about invasive surgical interventions and more about psychosocial understanding. Lastly, because no other opinion matters more than that of the mother and the child, or what she perceives would be the child’s wishes, Mrs. Holloway must search deep, taking heed of the advice presented in this paper, and come up with the best solution for herself and her growing family. BIBLIOGRAPHY Ahmed, S. Faisal, John C. Achermann, Wiebke Arlt, Adam H. Balen, Gerry Conway, Zoe L. Edwards, Sue Elford, Ieuan A. Hughes, Louise Izatt, Nils Krone, Harriet L. Miles, Stuart O’Toole, Les Perry, Caroline Sanders, Margaret Simmonds, A. Michael Wallace, Andrew Watt, and Debbie Willis. “UK Guidance on the Initial Evaluation of an Infant or an Adolescent with a Suspected Disorder of Sex Development.” Clinical Endocrinology 75, no. 1 (06, 2011): 12-26. doi:10.1111/

j.1365-2265.2011.04076.x. “Amniocentesis - Pregnancy Topics.” CYH Home. http://www.cyh.com/HealthTopics/HealthTopicDetails.aspx?p=438&np=459&id=2765#11 Bennett-Woods, Deb. “Nanotechnology: Nanotechnology and Human Enhancement.” Life Science Ethics, 2010, 435-50. doi:10.1007/978-90-481-87928_24. Cantor, Julie D. “Court-Ordered Care—A Complication of Pregnancy to Avoid.” Obstetrical & Gynecological Survey 67, no. 10 (10 2012): 607-09. doi:10.1097/01.ogx.0000422941.48990.43. Chavhan, Govind B., Dimitri A. Parra, Kamaldine Oudjhane, Stephen F. Miller, Paul S. Babyn, and Foao L. Pippi Salle. “Imaging of Ambiguous Genitalia: Classification and Diagnostic Approach.” RadioGraphics 28, no. 7 (11 2008): 1891-904. doi:10.1148/rg.287085034. “Concerns Regarding Early Fetal Development.” American Pregnancy Association. February 22, 2017. http://americanpregnancy.org/pregnancy-complications/early-fetal-development/. DeGrazia, David, Thomas A. Mappes, and Jeffrey Brand-Ballard. Biomedical Ethics. McGraw-Hill Higher Education, 2011. “Definition: Pediatric Endocrinologist.” KidsHealth. http://kidshealth.org/en/parents/endocrinologist. html. Dreger, Alice Domurat. Hermaphrodites and the Medical Invention of Sex. Harvard University Press, 2003. Dreger, Alice Domurat. Intersex in the Age of Ethics. University Publishing Group, 1999. “Frequently Asked Questions.” How Common Is Intersex? | Intersex Society of North America. http://www. isna.org/faq/printable. Hines, Melissa. “Prenatal Endocrine Influences on Sexual Orientation and on Sexually Differentiated Childhood Behavior.” Frontiers in Neuroendocrinology 32, no. 2 (04 2011): 170-82. doi:10.1016/j. yfrne.2011.02.006.

Hoskovec, MS, CGC, Jennifer Malone. “What Happens at a Prenatal Genetic Counseling Appointment?” National Society of Genetic Counselors. http://www. nsgc.org/p/bl/et/blogaid=365. Hughes, I. A. “Consensus Statement on Management of Intersex Disorders.” Archives of Disease in Childhood 91, no. 7 (06, 2005): 554-63. doi:10.1136/ adc.2006.098319. Kessler, Suzanne J. “The Medical Construction of Gender: Case Management of Intersexed Infants.” Signs: Journal of Women in Culture and Society 16, no. 1 (10 1990): 3-26. doi:10.1086/494643. Khan, Joad Anjum, and Shekhawat Laxmi. “Does the Cancer Patient Want to Know? Results from a Study in an Indian Tertiary Cancer Center.” South Asian Journal of Cancer 2, no. 2 (2013): 57. doi:10.4103/2278-330x.110487. Loewenstein, G and J S. Lerner. “The Role of Affect in Decision Making.” In Handbook of Affective Science, edited by R. Davidson, H. Goldsmith, & K. Scherer, 619-642. Oxford: Oxford University Press, 2003.