Religious Values and Refusal of Highly Effective Life Saving Treatment by Minors

By Michael DiStefano

Caring for children with life-threatening illnesses is very difficult for both parents and health care providers. The experience can be even more painful when the child refuses highly effective life saving treatment (HELST). Most states have “mature minor” statutes or case law that recognize the rights of children with demonstrated decision-making capacity (and who are usually older than 14 years) to make decisions about their health care as a legal adult, regardless of the wishes of their parents or providers. Two notable examples are Dennis Lindberg, a 14-year-old Jehovah’s Witness who died from leukemia after refusing a blood transfusion, and Benny Agrelo, a 15-year-old who died after refusing to continue taking immunosuppressants following two liver transplants. In each case a judge declared the boy a mature minor whose medical decisions must be respected.

However, the standard criteria for determining whether a minor has capacity are only likely to be adequate in the case of minors who invoke non-religious values to refuse HELST. I will argue that, though controversial, heightened scrutiny ought to be applied when minors justify their refusal with religious values. It therefore may have been wrong to treat Dennis Lindberg and others like him as mature minors.

In general, decision-making capacity rests on four conditions: (1) the ability to communicate a choice, (2) an understanding of the facts and information related to the choice, (3) an appreciation of the situation and its consequences, and (4) the ability to rationally manipulate the relevant information and to reason about treatment options.[i] These criteria ensure that a minor’s decision is valid in the logical sense. They require the minor to clearly state premises (i.e., subjective value statements and objective medical facts) that logically entail the truth of a clearly stated conclusion (i.e., whether to accept or refuse some treatment). Crucially, none of the criteria requires that the conclusion be philosophically sound. If so, we would need to be able to objectively determine whether all of an individual’s premises are true, in addition to the objective medical facts. However, because value statements are subjective, capacity determinations cannot require that minors’ decisions be sound if they are motivated by a desire to respect patient autonomy.

Still, merely valid decisions lack a critical component, namely, whether minors themselves genuinely believe their stated value premises. Some will object by noting that people generally do not state things they do not believe, especially when making high stakes decisions like whether to refuse HELST. However, this additional consideration is intended precisely for the admittedly rare circumstances in which minors express value premises with which they do not genuinely agree—knowingly or not—as a result of coercion or social pressures. These circumstances are worrisome because attempts to respect minors’ autonomy by granting mature minor status should not instead enable circumstances that have already compromised autonomy.

Patients who invoke religious values to refuse HELST are more likely to have experienced coercion or social pressures than those whose refusals rest on non-religious values. First, the stakes associated with religious values are more coercive than those associated with non-religious values because there is more to be lost by failing to uphold religious values. Religious values are often linked to absolute gains or losses. Eternal salvation often depends on whether one has lived according to the dictates of one’s faith. Non-religious values lack similar stakes. Of course, the repercussions for failing to honor non-religious values (e.g., moral distress, disappointment of loved ones, ostracization) are significant, but cannot compare to the gain or loss of something with infinite value like eternal life-after-death.

Second, religious values are frequently cultivated within tightly knit communities of like-minded individuals. The disappointment of loved ones and ostracization felt by those who fail to honor religious values are likely to be more acute than that felt by those who flout non-religious values. Of course, non-religious values are also inculcated within communities, but modern communities, especially those in Western liberal democracies, are pluralist in nature. Diverse communities are likely to tolerate a greater degree of divergence from value-based behavioral norms than homogenous religious communities that are typically the result of self-selection.

Third, young people are more easily influenced by their peers and other external pressures.[ii] Therefore, the religious values of minors active in religious communities are more likely to result from either a fear of absolute gains or losses or a desire to act in accordance with the expectations of those around them. Their religious values are less likely to be the result of their own considered and reflective deliberation.

Finally, education within religious communities is sometimes regulated (e.g., through home schooling or programs to complement public curricula) to limit access to competing views that may impact the values its adherents develop. Insofar as minors receive this regulated education, their religious values may be more a product of the views of their parents or community leaders than their own deliberation.

Returning to the cases introduced above, Dennis Lindberg, a Jehovah’s Witness, justified his refusal of HELST with the religious value that blood transfusions are contrary to the tenets of his faith. Per the traditional standards for demonstrating capacity, Dennis clearly articulated this value and logically demonstrated its relation to his refusal. However, the four reasons just discussed combined with the fact that his aunt—also a devoted Jehovah’s Witness—was raising him call into question how genuinely he believed the value. Benny Agrelo was not similarly influenced by religion.[iii] His refusal of HELST was based on the value that a shorter, but higher quality life is preferable to a more prolonged, but painful existence. He felt too sick while taking immunosuppressants to enjoy life. Benny’s parents initially held the opposite opinion,[iv] thus supporting the claim that non-religious values are less likely to be the result of social pressures.

When minors refuse HELST, providers should be especially mindful of the social forces that influence religious values. It is not enough to rely on the traditional criteria for determining decision-making capacity in these circumstances. Providers should engage more closely with these young patients, perhaps by adopting the deliberative model of the physician-patient relationship,[v] and do their best to ascertain how free they are from coercion or social pressures and how genuinely they believe their professed religious values. Similarly, the law should be revised with this heightened scrutiny in mind.

Michael is currently a Teaching and Research Assistant at the University of Pennsylvania where he recently completed a Master's degree in Bioethics. He graduated from Princeton University in 2011 with a degree in Religion and Philosophy. His research interests include religion and clinical ethics, the ethics of mobile health technologies and health incentives, and reproductive ethics. This post was chosen as a finalist for the 2014-2015 Daniel Callahan Young Writer's Prize. 

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[i] Paul S. Appelbaum, “Assessment of Patients’ Competence to Consent to Treatment,” The New England Journal of Medicine 357 (2007): 1834-40; Douglas S. Diekema, “Adolescent Refusal of Lifesaving Treatment,” Adolescent Medicine: State of the Art Reviews 22, no. 2 (2011): 213-28.

[ii] Diekema, “Adolescent Refusal of Lifesaving Treatment.”

[iii] Jonathan F. Will, “My God My Choice: The Mature Minor Doctrine and Adolescent Refusal of Life-Saving or Sustaining Medical Treatment Based Upon Religious Beliefs,” The Journal of Contemporary Health Law and Policy 22, no. 2 (2006): 233-300.

[iv] Ibid.

[v] Ezekiel J. Emanuel and Linda L. Emanuel, “Four Models of the Physician-Patient Relationship,” Journal of the American Medical Association 267, no. 16 (1992): 2221-6.

Daniel Callahan Young Writer's Prize Winner

Congratulations to Michelle Bayefsky on winning the first Daniel Callahan Young Writer's Prize! Michelle will be receiving the prize award of $500 and a copy of Daniel Callahan's autobiography, In Search of the Good: A Life in Bioethics. Thank you to the finalist judges, Daniel Callahan, Michael Gusmano, and Laura Haupt (their bios can be found here). 

Uterine Transplant: Where, If Anywhere, Should We Draw the Line?
By Michelle Bayefsky

In October 2014, researchers from the University of Gothenburg in Sweden reported the first case of a live birth following a uterine transplant. The uterus was transplanted from a postmenopausal woman into a 36 year-old woman born without a uterus. At nearly 32 weeks of pregnancy, she gave birth to a male child with normal birth weight for gestational age and excellent APGAR scores.[1]

The birth of this child represents a tremendous breakthrough in the treatment of infertility. There are many causes of female infertility, including damaged fallopian tubes, premature menopause and endometrial (uterine tissue) abnormalities. Corresponding treatments include in vitro fertilization, use of donor eggs, and use of a gestational surrogate. Uterine transplantation could obviate the need for gestational surrogates for patients with uterine infertility, allowing these mothers-to-be to carry their own pregnancies and potentially precipitating a decline of the controversial practice of surrogacy.

But why stop there? If uterine transplantation is a treatment for absolute uterine infertility, trans-women also have this condition, and so do all men. In this essay, I will explore whether and where to draw the line for those who should be eligible for a uterine transplant.

It is not yet possible for individuals with XY sex chromosomes to gestate a child. However, the desire for transgender women to carry a pregnancy is present,[2] and at least one bioethicist, Timothy Murphy, has begun to think about the prospect of uterine transplants into trans-women.[3] Murphy correctly focuses on state funding, since the hands-off regulatory attitude towards reproductive medicine in the United States[4] makes it unlikely that transgender uterine transplants would be banned outright. The debate about the appropriateness of transgender uterine transplants will therefore center on the need to prioritize limited healthcare resources.[5]

There are two central questions at stake. First, is there such a thing as a right to a uterine transplant? Second, is there a reason to distinguish between cis-women, trans-women, and men with regards to their claims to a uterine transplant, whether or not rights are at stake? If so, the state could be justified in prioritizing the needs of cis-women over trans-women over men who desire to gestate a child.

Uteruses are a scarce resource, and the state cannot ensure uteruses to all those who might lack and strongly desire them. It is therefore difficult to claim that people have a right to a uterine transplant, though they may have a right to fair access to an established supply of uteruses, should one come to exist. The scarcity issue is compounded by the fact that uteruses, like other organs, exist within other people’s bodies. Unless a sufficient number of uteruses are supplied via donation, claiming a right to a uterine transplant would be claiming a right to someone else’s body part. One could conceive of body parts as public goods, but such a view would violate our closely held beliefs about bodily autonomy. Since the state cannot forcibly redistribute organs, the right to a uterus can only be a right in an abstract sense. Nevertheless, the relative strength of claims to this abstract right can be used to determine what constitutes fair access to the limited supply of uteruses. Who, if anyone, should be prioritized?

Answering this question requires that we carefully examine our notions of infertility and instincts about childbearing. Intuitively, we might think there are reasons to differentiate among cis-women, trans-women, and men based on physical features and what it means to be “infertile.” For instance, it may be tempting to argue that cis-women without uteruses are infertile because they lack the typical reproductive organs of an XX-woman, while trans-women and men are fertile because they can still use sperm to ‘father’ children in the classic XY manner. However, all three categories are fertile in terms of their gametic capacity to reproduce but infertile with regards to the capacity to gestate.

One might also attempt to argue that women, whether cis or trans, have a stronger claim to the experience of carrying a child because it is typically a woman’s experience and part of being female. However, many women choose not to have children and are not lesser women because of it. Furthermore, arguments about childbearing based on assumptions about what it means to be a woman risk unjustly imposing societal norms and expectations on women, both cis and trans.

It may seem that distinctions among the three groups most plausibly rely on assertions relating to the prospective happiness of the transplant recipient. It is possible that cis-women have greater childbearing expectations, and would be most anguished by the inability to carry a pregnancy and should thus be given highest priority. Similarly, trans-women, who identify as the sex that typically bears children, may be more anguished than a self-identifying man. It is easy to imagine, though, a trans-woman who has always longed to gestate a child, or even a man with a very strong desire to carry a child, who would suffer deeply if they could not obtain a uterine transplant – even more than some cis-women without functional uteruses. Thus psychological impact could not reliably be used to distinguish among the three groups.

Ultimately, a priori distinctions could most reasonably be made on the basis of differential resource expenditure. If uterine transplantation is significantly easier, more successful or less expensive in a cis-woman, or a trans-woman who has undergone hormone therapy, this justifies prioritizing these groups the same way recipients are prioritized in the donation of other organs.[6]

Realistically, given the general lack of coverage for fertility services in the United States,[7] it is unlikely that either cis or trans-gender uterine transplants will be funded in the near future.

However, if uterine transplants do receive public funding and transplants into XY women and men are equally successful and no more economically burdensome than transplants into XX women, trans-women, as well as men with a profound desire to gestate, should be equally eligible to receive a uterine transplant.

Michelle Bayefsky is a first-year pre-doctoral fellow in the Department of Bioethics for the National Institutes of Health. She graduated from Yale University in 2014 with a B.A. in Ethics, Politics and Economics. She worked as a research assistant for two consecutive directors of the Yale Interdisciplinary Center for Bioethics. She also founded and served as Editor-in-Chief of the Yale Bioethics Journal. Michelle currently investigates ethical challenges posed by innovations in genetic technology, issues related to the regulation of genetic testing, and questions that arise at the intersection of genetics and reproductive medicine.
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[1] Brännström, M., L. Johannesson, et al. (2014). "Livebirth after uterus transplantation." The Lancet.

[2] Mott, Stephanie. "Trans-Uterus." The Huffington Post. TheHuffingtonPost.com, 21 Jan. 2014. Web. 14 Nov. 2014.

[3] Murphy, Timothy. "The Ethics of Helping Transgender Men and Women Have Children." Perspectives in Biology and Medicine 53.1 (2010): 46-60.

[4] Leigh, Suzanne. "Reproductive 'tourism'" USA Today - Health and Behavior. USATODAY.com, 02 May 2005. Web. 19 Sept. 2014; Williams, Benjamin. "Screening for Children: Choice and Chance in the “Wild West” of Reproductive Medicine." George Washington Law Review 79.4 (2011): 1305-342.

[5] Murphy, Timothy. "Uterus Transplants for Transgender Women?" Weblog post. Ethics and Choices about Children. Timothyfmurphy.blogspot.com, 27 Apr. 2014. Web. 14 Nov. 2014.

[6] The use of cost-effectiveness arguments in prioritizing organ transplantation is itself controversial (see, for example, Dan Brock, “Ethical Issues in the Use of Cost Effectiveness Analysis for the Prioritisation of Health Care Resources”), but I cannot explore this issue here.

[7] "State Laws Related To Insurance Coverage for Infertility Treatment." Insurance Coverage for Infertility Laws. National Conference of State Legislatures, Jun. 2014. Web. 12 Nov. 2014.

Paws and Talk About Cost

By Chelsea A. Jack

“The capacity for suffering and enjoying things is a prerequisite for having interests at all, a condition that must be satisfied before we can speak of interests in any meaningful way,” –Peter Singer

Singer has argued for the equitable and fair treatment of animals based on their ability to suffer in ways similar to humans. I wonder if, in some circumstances, ill pets are treated more humanely in times of crisis than their human counterparts.

Daniel Callahan, co-founder of The Hastings Center, has thoughtfully written on how Americans view cost as a morally acceptable factor in decision-making when it comes to the death of a pet, but not always the death of a human loved one.  Veterinary doctors are not only willing to explain a patient’s prognosis, but also the financial costs for a family choosing among various treatment options for their pet. The reason for this seems to be that conversations about end-of-life decision-making come more easily in the context of veterinary care than when the patient in question is a human loved one. Because medical doctors are often reluctant to talk about end-of-life care with their patients, conversations about the financial costs of such care do not occur either. This is not necessarily the case with veterinary care, where, if anything, vets go out of the way to prepare families for the likelihood of death – and its costs. With both human and non-human patients facing illness, the financial costs of care can be startling and deeply upsetting. Callahan has asked how medical doctors might deliver care options to patients in the way his family’s vet did: “beautifully integrat[ing] money, medical candor, and compassion.”

I found myself considering Callahan’s reflection on the death of his own Cavalier King Charles as I sat in the waiting room of the VCA Animal Specialty & Emergency Center in Wappingers Falls, New York a few weeks ago. In no more than three minutes, my beloved 8-month-old Boxer-Pit mix named Trapper – after MASH 4077’s Trapper John, MD – ventured away from me with another canine companion during a cookout with my neighbors. He played leap frog in-between cars speeding down a nearby highway. When I realized he was gone, I ran down to the road with an ominous feeling in my gut. After calling his name for a minute, an adrenaline-charged Trapper came bolting up from the highway and collapsed at my feet completely out of breath. He had deep abrasions along his front-left paw, which was visibly knotted, and, as the adrenaline wore off, he could barely stand, even though he remained stoically silent with his ears back and eyes locked to my face.

I broke every speed limit on the way to the emergency care center where Trapper went into shock and began convulsing. Exchanging worried glances, the nurses quickly carried him away from me into another room where they attempted to stabilize him.

Immediately, but kindly, a nurse presented me with a series of consent forms and unsettling numbers: Was I okay with paying $400-600 to stabilize Trapper? Did I want them to try and resuscitate Trapper if his heart stopped, even if it meant spending $500 on a procedure with a success rate around 17 percent? Did I consent to the three recommended x-rays of his front-left leg, chest, and hips, which would approach $400 – without factoring in the possibility of further x-rays later over the next 24 hours? There was a possibility that Trapper would pass away due to contusions in his lungs – did I want to keep him overnight for monitoring even if that was another $200? Did I want to see the credit plan offered for 12 months without interest for patients who cannot afford expensive high-quality care?

Throughout the whole nightmare, the doctors and nurses presented each decision-making scenario with at least two options: cost projections for the “ideal” treatment plan versus the “less-ideal” treatment plan. As I weighed these projections, I thought how the word “ideal” places a nontrivial degree of guilt onto the decision-maker who opts for the less-ideal options. It problematically values the more costly decision as morally preferable, even when this might not accurately reflect the moral landscape – marked by competing financial obligations – in which real-time decisions are made.

Individuals and families (more often than not) cannot isolate an immediate, short-term moral decision from the other long-term ones lingering in the background. For example, as I weighed the two treatment plans presented to me, I thought, “I have signed a lease committing me to pay $X/month. I love my apartment and cannot legally break this lease agreement, and I cannot emotionally or financially afford to forfeit my living situation even if it means that Trapper has to receive the 'less-ideal' treatment plan". As a recent post-grad, I weighed the costs of fulfilling one long-term goal (i.e. living happily in my new home) against the costs of fulfilling my obligations to care for Trapper as my pet who was facing a health crisis. Committed and interdependent moral agents are forced to make these kinds of decisions every day. In my case, it was productive to not only have Trapper’s physician initiate a conversation about our end-of-life preferences, but also address possible treatment options and possible costs. 

Miraculously, Trapper is expected to make a full recovery and came  home from the emergency care center after 24 hours of observation. I’ll borrow Callahan’s language to describe my own personal take-away from this ordeal: Trapper’s care team embodied those qualities that “we might hope for from a doctor for our care, but by no means yet reliably available” in the human medical context.

Chelsea is a Research Assistant at The Hastings Center. She graduated with highest distinction from the University of Virginia, where she received a B.A. in political and social thought and anthropology with a minor in bioethics. Her research interests include medical and legal anthropology, political and social theory, bioethics, and contemporary feminist thought. 

The Daniel Callahan Young Writer's Prize

Prize Summary 
This post is pleased to announce a new award, The Daniel Callahan Young Writer's Prize, sponsored by Daniel Callahan. Submissions will take the form of essays on a bioethics topic that are written as blog posts, designed for this blog, Bioethx Under 25. From all submissions, a group of finalists will be chosen and then an expert panel of bioethicists, including Daniel Callahan, will read the finalists' essays and award one prize amounting to $500. 

All submissions will be considered for publication on the blog and eligibility to be a finalist or receive the prize is dependent on willingness to edit and revise the essay for publication. Submissions will be judged anonymously. Please see guidelines below for further information. 

Prize Submission Guidelines

- Essays must be 500-1000 words and original submissions to Bioethx Under 25 i.e. never posted before on the blog. 

- Essays must conform to all other submission guidelines for the Bioethx Under 25 blog and thus, be clearly related to bioethics and be written in an accessible manner. Please refer to the blog's About Page for more information. 

- Essays will be accepted from September 10th, 2014 to November 15th, 2014. 

- Any writer who is also a student in high school, college, or a graduate program is eligible to submit. Any writer who is not a student is eligible so long as he/she has not completed a PhD and/or worked more than 5 years in the bioethics field with a terminal degree (e.g. JD or MD). So long as the other guidelines have been met there is no age limitation or requirement for submission. 

- Writers are not eligible if they currently or have previously worked full time for The Hastings Center or Daniel Callahan. Anyone affiliated with Bioethx Under 25 in an editing capacity is also ineligible. 

- To submit, please email bioethicsunder25@gmail.com with your essay attached in word format. In the body of the email please indicate that you are submitting for The Daniel Callahan Young Writers Prize and include your name, phone number, email address, current occupation and place of occupation (if a student, then your school, potential degree, and expected graduation year), and your highest degree attained with the school and year. 

- For any questions please email bioethicsunder25@gmail.com or comment below. 

About Daniel Callahan

Daniel Callahan is Senior Research Scholar and President Emeritus of The Hastings Center. He was its cofounder in 1969 and served as Director and President between 1969 and 1996.  Over the years his research and writing have covered a wide range of issues, from the beginning until the end of life. In recent years, he has focused his attention on ethics and health policy.

He has served as a Senior Lecturer at the Harvard Medical School and is now a Senior Scholar at Yale. He received his B.A. from Yale and a PhD in philosophy from Harvard. He has honorary degrees from the Charles University, Prague, the Czech Republic, the University of Colorado, Williams College, Oregon State University, the State University of New York and the University of Medicine and Dentistry of New Jersey.

Callahan is an elected member of the Institute of Medicine, National Academy of Sciences; a former member of the Director’s Advisory Committee, the Center for Disease Control and Prevention, and of the Advisory Council, Office of Scientific Responsibility, Department of Health and Human Services. He won the 1996 Freedom and Scientific Responsibility Award of the American Association for the Advancement of Science. He is the editor or author of 47 books. 

Hobby Lobby and Freedom from Religious Employers

By Naomi Scheinerman

The decision in Burwell v. Hobby Lobby Stores has been severely scrutinized, from rebukes against corporate personhood to feminists decrying that the Court’s majority, five conservative male judges, devalue and deny women’s personhood. Justice Ginsburg’s scathing dissent and Justices Sotomayor and Kagan’s equally passionate disapproval offer a gendered lens that is impossible to ignore. And further, the Hobby Lobby decision actually does far more harm than good in protecting religious freedoms.

First, Hobby Lobby’s anti-contraception argument relies on fallacious scientific claims that will facilitate further violations of the corporation’s religious beliefs. Hobby Lobby objects to the two IUD’s and Plan B and Ella (emergency contraception) by claiming that using them is akin to having an abortion. This is false. Plan B and Ella prevent ovulation which prevents pregnancy after sex. The International Federation of Gynecology & Obstetrics published a study concluding that because Plan B does not inhibit implantation, it is therefore not an “abortifacient,” a substance that induces abortion. Because Hobby Lobby argued that emergency contraception equals abortions, when in fact emergency contraception does NOT equal abortions, the Court should have thrown out Hobby Lobby’s arguments. As a result of this decision, women who work for Hobby Lobby and are now denied emergency contraception coverage will be much more likely to seek an abortion in their future. Half of women who purchase Plan B do so because of unplanned pregnancy (which includes both consensual and non-consensual sex). Hobby Lobby is paving the way for more abortions, not fewer.

Second, Hobby Lobby’s small closely held corporation’s religious freedoms are being protected at the expense of the freedom from religious imposition on its employees who rely on health insurance to access reproductive freedoms. A closely held company is one in which five or fewer people own the majority of the company. Not only is it strange to treat a corporation as a person with its own convictions, but this decision shows that the Court prefers the religious arguments of a few people in charge over the views of many more who actually work for the corporation. The Religious Freedom Restoration Act of 1993 (RFRA) – the legislation that Hobby Lobby claimed the contraception mandate violated - was originally enacted to protect Native Americans from laws that burdened their exercise of religion. As such, the RFRA was originally constructed to protect employees from theburdensome religious standards of employers and laws. In fact, Catholic and other Christian denominations were even opposed to the RFRA initially because they thought it would protect the “right to a religiously-motivated abortion.” Even if an employee of Hobby Lobby does not have a religious conviction to use contraception, the employers of Hobby Lobby are imposing their religious views by forcing the employees’ actions to align with their own religious practices that forbid abortions. An individual at Hobby Lobby, who is not one of the five people in the entire corporation who wants to prevent contraceptive access, is burdened, something the RFRA was meant to prevent, not allow.

Third, there is real danger in granting religious freedom to corporations that claim exemptions to laws. In Callahan v. Woods, for example, taxpayers used the RFRA to object to the use of social security numbers, arguing that they related to the “mark of the beast.” The Court dismissed this argument. Since the release of the Hobby Lobby decision, many companies have come out of the woodwork, claiming religious exemption to other laws that ban discrimination in hiring or protect women’s reproductive freedoms. The Court ruled that the religious freedom is protected when the law imposes a “substantial burden” on the corporation. This should be interpreted to what the corporation does (its business and goals) rather than how the five or fewer owners feel about the actions of their employees. Is it a substantial burdensome to the selling of paint and brushes to allow female employees to obtain emergency contraption or an IUD?

My last fear is that real and compelling claims of religious exemption, wherein an employer or employee has a true and ethical, religious  belief that a law severely infringes, will become watered down by the numerous unethical claims. About 90% of all American businesses fit the category of closelyheld.  Corporations should not be in the business of determining the appropriate health care package for employees based on religious convictions when it overrides the individual employees’ values. This places an inordinate amount of control on employees’ actions outside the office, such as their reproductive decisions, something the Supreme Court declared was protected by the right to privacy. Employers should not define employee competency by her personal life decisions, but rather based on qualifications and aptitude for the job. This is why employers should not discriminate against gay applicants and should not dictate the sexual freedom of its female employees. Justice Ginsburg accurate identified the dangers of the Hobby Lobby decision: it validates inordinately unethical claims of religious exemption that employers have no right to make.

Naomi Scheinerman is a Research Assistant at The Hastings Center. She graduated Phi Beta Kappa, with high honors and in distinction from the University of Michigan in Ann Arbor, where she received bachelor’s degrees in philosophy, political science, and Hebrew and Jewish Cultural Studies. She contributes a bi-weekly column on reproductive health.

On the Matter of Life and Death

By Michael DiBello

The Death of Ivan Ilyich by Leo Tolstoy provides a chilling and sobering tale of death. Ivan Ilyich is caught up in the everyday routine of what most would consider a patently ordinary life. His main concerns are everyday problems and affairs. He holds an unreflective stance towards death, perceiving it as a simplistic event experienced by the other, not himself. Yet, that all changes when he begins to die. He grapples deeply with the meaning of life, suffering, and death. Questioning the core of his being, he starts to doubt how well he had actually lived his life and experiences an agonizing death.¹

For me, the novel raised several important questions, including: Can we truly live well and meaningfully without thoroughly reflecting on our own mortality? What, if anything, can be done to prevent deaths like Ivan Ilych's and other so called “bad deaths”?

People can live similar lives and die similar deaths. Nonetheless, just as every individual lives in a way fundamentally his own, everyone has a unique encounter with the specter of death. We can die quickly or slowly, painfully or painlessly, in denial or with acceptance, of old age or by accident, bitter or satisfied; the list of descriptions can go on and on.  Most people, when asked, could probably come up with an ideal conception of how they would like to go. While some undoubtedly experience a serene and graceful passing, surgeon Sherwin Nuland explains in How We Die that this is rare. Sadly, a norm for the end of life has become futile life support and unfamiliar doctors and nurses.² Perhaps educating ourselves on what we can more realistically expect to happen to us in the dying process can not only minimize physical suffering but also allow us to appreciate and reflect more deeply on what we distinguish as valuable and important in being a person. Indeed, what tortured Ivan Ilyich was that it was too late for he, himself, to think about what death really meant and hence, what life really meant.

How often do we really think of death in terms of ourselves? The philosopher Martin Heidegger was concerned that conceptualizations of death separate it from the self and are inauthentically placed in the public domain. He argued this was evident through linguistic expression that reduced death to an event that happened to “one” or “they”. As he says, “dying is not an event, it is a phenomenon that should be understood existentially… by its very essence, death is in every case mine, insofar that it ‘is’ at all.”³ Heidegger asks the question: Why is the concept of “dying” only utilized in the context of imminent death? In Being and Time he introduced “being towards death” as a philosophical idea.³ This means that dying is something happening all of the time to everybody, most importantly to oneself, not just to specific people at specific times.

Popular media and culture surrounding medicine play powerful roles in attitudes about death and dying. The latest reports about miracle drugs, while in some ways encouraging, may unconsciously cultivate unrealistic expectations about sustaining life when death is inevitable. These and other technological advances can give the illusion that dying is something we can control and have a choice in, or that the process can micromanaged. It is hard to deny that choice has become an integral part of the dying process in modern medical culture. A plethora of choice can foster hope for people in many medical situations. While hope can bring deliverance, false hope can bring suffering. Nuland explains that doctors (and the patients they influence) may tend to see death as something that must be conquered at all costs, as something for science to overcome. Unfortunately, he says the process devolves into a “puzzle” that must solved, far removed from real human emotions and needs.²

Ars moriendi, or the art of dying,² perhaps is the type of paradigm shift that is needed regarding mortality. Death should not be avoided at all costs, yet it should not always be readily accepted without medical intervention. It is an ambiguous, complex phenomenon that is not conducive to pure ideologies. Just as the artist does not look to science when he paints a canvas, one need not look to science to engage in an intensely personal experience. Doctors and other healthcare workers need not be the only “experts” on dying. Perhaps, ironically, grappling with the nature of mortality and what it entails can be healthy for an individual's sense of personhood. For example, upon learning he was terminally ill, Australian philosopher Julian Young was so inspired that he wrote three books in four years. A terminal patient describes a new-found vividness: “To live in the bright light of death is to live a life in which colors and sounds and smells are all more intense, in which smiles and laughs are irresistibly infectious, in which touches and hugs are warm and tender beyond belief…”.³

Henry David Thoreau may teach a further lesson on death and dying. A great thinker, social activist, and naturalist, he was clearly full of passion for the extraordinary life he lived. However, if we are to trust his comments in midst of a terminal disease, it is clear he gave quite a bit of consideration to his own mortality: “When I was a little boy I learned that I must die, and I set that down, so, of course, I am not disappointed now. Death is as near to me as it is to you”.³ 

1. Tolstoy, Leo, and Richard Pevear. The death of Ivan Ilyich and other stories. New York: Alfred A. Knopf, 2009. Print.

2. Nuland, Sherwin B.. How we die: reflections on life's final chapter. New York: A.A. Knopf :, 1994. Print.

3. Barry, Vincent E.. Philosophical thinking about death and dying. Belmont, CA: Thomson/Wadsworth, 2007. Print.

Mike graduated from Northeastern University in January 2014 with a major in biology and a minor in ethics. He is interested in a wide range of issues in bioethics and how they are applied in today's world.