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.

Point and Counterpoint: Vaccines

This piece and the one that follows, “The Paradox of Government Vaccine Mandates” by Tim Rubbelke, present a point and counterpoint in the current resurgence of debate over vaccines. The first, by Kristen Senetar, outlines the positives of maximum vaccination while the second examines the problematic nature of enforcing this notion.

By Kristen Senetar

If you’ve turned on the news lately, you’ve probably heard about the outbreak of measles in the United States. Although the infectious disease has been considered eliminated from the United States since the year 2000¹, more than 120 people have contracted it since the beginning of this year.² How could an outbreak like this happen when there is a vaccine to protect us from measles? Should everyone be required to be vaccinated?

Vaccines are used to protect us against numerous diseases: measles, mumps, polio and countless others. The two-dose measles vaccine, which is spread out over several years, is 97% effective.³ The protection offered by this and other vaccines has helped our world become a much healthier place. While not 100% effective, vaccines have saved countless lives by offering a great defense against diseases that can often turn deadly. They are a quick and easy way to protect yourself and your family from illnesses. So why wouldn’t every parent vaccinate their child?

Some people do have concerns about vaccines. Over the past decade, there has been a growing fear that vaccines are linked to autism. However, the 1998 article, which stated that certain vaccines increase the risk of autism has been proven false, retracted from the Lancet, and the author of the paper later lost his medical license.⁴ There are also some individuals who cannot be vaccinated due to medical conditions such as certain allergies or suppressed immune systems. However, this number of individuals who cannot receive vaccines due to medical reasons is significantly smaller than those who can.

Should everyone be required to get vaccinated against measles and other communicable diseases?

The short answer is yes, everyone should be required to get vaccinated for everything possible, as suggested by their doctor. Except for those who have a specific medical condition and those with religious objections, most Americans can receive all vaccines. It is essential that the majority of the population gets vaccinated because it will support herd immunity. This notion is essential to public health, stating that if the number of people who are vaccinated is significantly greater than the number of those who are not, the vaccinated population can essentially protect the unvaccinated population. However, as the unvaccinated group grows larger and larger, herd immunity becomes less and less effective. Therefore, it is crucial that those who can be vaccinated do so in an effort to protect themselves and others.

There are also some people who have religious objections to vaccines. While religious freedom is a valued good, parents’ choices to not vaccinate endanger their children. If they will not vaccinate their children, then perhaps alternative actions should be put in place during periods of outbreaks, such as not allowing them to go to school. If an unvaccinated child were exposed to a disease, like the measles, and went to school before realizing what they had, they would be placing everyone at their school at risk of exposure. Even though most vaccinated children would go unharmed, the vaccine is not 100% effective. Keeping unvaccinated children out of school during times of outbreaks would help protect both the vaccinated and unvaccinated population.

Medical conditions aside, is it ethical to require everyone to vaccinate his or her children? This can be answered using two of the ethical principles: beneficence and non-maleficence. Take, for example, a newborn baby named Joe. Joe hasn’t been exposed to the germs of the outside world, like the cold virus or measles. He begins his life by staying inside most of the time, only going out for short walks or trips to the doctor’s office. Shortly after turning one, Joe receives his first MMR vaccine, as suggested by his doctor. As he continues to grow, Joe receives all the suggested vaccinations and lives a fairly healthy life. One day, while on an airplane, Joe, who is now a teenager, unknowingly sits next to someone infected with measles. Since Joe received the measles vaccine, no harm comes from the situation and he continues to be healthy as he grows into an adult. This scenario supports the principle of beneficence because the vaccines helped keep Joe healthy and protected against disease.

Now, imagine the same child, Joe, had parents who decided, for non-medical or religious reasons, to not vaccinate him as suggested by his doctor. Joe grew normally, just like kids who did receive vaccines, and led a fairly healthy childhood. One day, Joe, who is now a teenager, got on an airplane and unknowingly sat next to someone who had the measles. Since the measles is a highly communicable disease and the two were sitting so close together, Joe was exposed to the disease. Joe, who never knew the person next to him had the measles, felt fine after leaving the airport but a few days later starts experiencing symptoms. In a matter of days, Joe grows very sick and ends up in the hospital. After several long days, Joe begins to feel better and finally makes a full recovery. While the outcome of a full recovery is the best case, Joe experienced unnecessary suffering and harm. Therefore, the decision Joe’s parents made to not vaccinate him violates the ethical principle of non-maleficence.

Overall, vaccines were created to protect us from harm. No medical intervention is 100% effective or 100% safe. Some people do experience reactions to vaccines, but the majority does not. For most people, vaccines offer a greater benefit than they do the possibility of harm. Medical conditions aside, it is our duty to protect others and ourselves from diseases like the measles by following medical guidance to receive vaccinations. Who knows, the life you save might just be your own.

Kristen is currently a Regulatory Assistant at the University of Texas Southwestern.  She received a B.S. from Butler University in biology with minors in mathematics and chemistry and a Master's in Bioethics from Case Western Reserve University.  Her interests in the bioethics field include genetics, vulnerable populations and the rights of the unborn.

^1,3 "Measles Vaccination." Centers for Disease Control and Prevention. Centers for Disease Control and Prevention, 4 Feb. 2015. Web. 14 Feb. 2015. <http://www.cdc.gov/measles/vaccination.html>.

² "Measles Cases and Outbreaks." Centers for Disease Control and Prevention. Centers for Disease Control and Prevention, 14 Feb. 2015. Web. 14 Feb. 2015. <http://www.cdc.gov/measles/cases-outbreaks.html>.

⁴ Caplan, Arthur. "There Is No Other Side to the Vaccine Debate." Chicagotribune.com. 13 Feb. 2015. Web. 14 Feb. 2015. <http://www.chicagotribune.com/news/opinion/commentary/ct-measles-vaccine-jenny-mccarthy-autism-ebola-perspec-0213-jm-20150212-story.html>.

The Paradox of Government Vaccine Mandates

By Timothy Rubbelke

Few aspects of medicine invoke so much disagreement among people.  Vaccines have fundamentally changed the way we think about illness.  Yet, they are still rejected by a surprisingly large subset of the population.  To ward off potential public health catastrophes we engage in draconian measures, including preventing school registration without proper vaccination.  In spite of this, lack of vaccination has caused a resurgence of diseases thought to be eliminated.  This begs the question: are the mandates working or could they actually be counterproductive?

Public Mistrust of Vaccination

Vaccination is the source of much public mistrust today.  No longer just an issue for fringe groups and religious objections, vaccination bashing has become embedded in popular culture through statements made by celebrities, most famously Jenny McCarthy.  Given that data shows vaccines to be incredibly safe and yet these groups still continue to gain followers, we should look at some of what animates them.

It seems easiest to connect the anti-vaccination movement’s beginnings with the now infamous study by Dr. Andrew Wakefield published in The Lancet in 1993.  A relatively small study, Wakefield concluded that the MMR vaccination caused damage to the intestinal system of growing children, which in turn resulted in more toxins getting into the blood stream, making them more susceptible to developing autism.[1],[2]  Ultimately the Wakefield study would be proven false, the connection between vaccines and autism thoroughly severed by science, and yet this idea remains an incredible concern for many, with some people going so far as to reanalyze CDC data to find a connection.[3]

The theory of dangerous vaccines gained even more traction when the CDC began looking into the possibility that thimerosal, the mercury-based preservative used in many vaccines, was linked to autism.  This potential danger appealed to common sense as well as scientific sense.  After all as Neal Halsey, one of the CDC proponents of removing thimerosal, reasoned: we are cautious about mercury levels in fish, doesn’t it make even more sense to be cautious about the levels in vaccines given to newborns and young children.[4]  Eventually thimerosal would be removed from vaccines, out of precaution, even though the scientific evidence was sparse regarding its effects, if any, on children.  But this resulted in a ripple effect of growing distrust against vaccines.  In turn, this would open the door for groups like the National Vaccine Information Center, an organization that claims to be neutral towards vaccines although it was founded by an anti-vaccination advocate and Generation Rescue, Jenny McCarthy’s charity, to gain credibility as experts on the national stage.[5]

Those with anti-vaccination beliefs are still very much a noticeable group.  Vaccination in some schools in California, for example, has dropped below 50%, with “Personal Belief Exemptions” sometimes outnumbering the number of vaccinated students.[6]  Yet something has to underlie this mistrust for it to continue to maintain a national presence.  I would suggest that the government mandates provide the backdrop which the anti-vaccination uses to gain traction in its fight.

Americans and their Freedom

Before beginning our discussion on vaccines specifically, it may be helpful to first discuss the importance of freedom for Americans.  Freedom, of course, is a broad and somewhat vague word.  When we speak of the American notion of freedom that is of interest here, we are referring to personal liberty, specifically civil liberty.  Civil liberty entails one being free from state interference, except, at the bare minimum, to ensure the public good. Consider as an example the recent pushback against the so-called “individual mandate” included in ACA.  Since the passage of the bill, there has been an outpouring of opposition towards it.  Some 27 states filed lawsuits seeking to have the mandate overturned on constitutional grounds, an argument eventually rejected by the Supreme Court, which declared the mandate a tax.  Ten states have passed various forms of legislation that attempt to overturn the mandate at the state level.  Two of these passed with crushing margins in public elections. One in Ohio passed with a double digit margin.[7],[8]  Similarly, an August 2011 poll of Americans showed that over 80% believed the government should not have this power.[9]  Regardless of one’s individual position on the matter, I think it could be argued it is not well received by the public.  But what does this tell us about perceptions of the government?  It tells us quite a lot.  It is not necessarily that these people are opposed to the idea of purchasing healthcare insurance or even of government helping to control health cost (statistically speaking, many of these people likely already purchase health insurance).  It is the very idea of government telling them that they must do something that seems to be the problem.

And so it may be with vaccines.  Simply put, it shows that Americans tend to reject what they see as an excessive reach of government which would repress autonomy, especially in issues of healthcare.  Thus we can begin to see that if vaccination is considered, at least by some, to be an overreach of government, the result can be distrust against it.

The Paradox

It should be noted that the intent is not to convince people at the far ends of the vaccine debate -- such a goal would be impossible anyway --  but rather to try to understand how one side, in this case the anti-vaccine groups, captures the minds of those in the middle.  Having said that, we can now see how the mandates might actually be counterproductive to encouraging widespread vaccination.

All conversations about the merits of vaccination must now take place against the backdrop of government mandates and power.  This allows members of the anti-vaccine movement to place these mandates in contrast with the American liberty narrative during any discussion, fostering distrust in government and convincing people of their cause.  Considered alone, the mandates might not cause much of a problem.  After all, they have existed for some time before vaccine rates started to decline, but we must also consider that we’ve developed what might be called “societal amnesia” with regards to many of these diseases. For my grandparents, concerns about polio saturated their lives, and yet many people from my generation have never even seen a polio victim beyond clips of Franklin Roosevelt.  This leads people to erroneously conclude the vaccines have no actual benefit, further reinforcing the idea of an overbearing government.  However, if the vaccine mandates were dropped, this would take away one of the key pillars of their argument. The movement would no longer be able to frame the debate in terms of a battle between personal autonomy and an overzealous government.

Of course the obvious potential fallout from such a maneuver would be that vaccines now have to stand (or fail) on their own merits.  However, not all hope is lost.  In eliminating the vaccine mandates, we will also have severed the connection between doctors and the state, at least to some extent. As such, the trust between the patient and physician, as well as the trust between medical science and society, can be allowed to grow without being poisoned by an overarching political discourse.

There is still a potential danger in rolling back vaccine mandates.  We risk a short term drop in vaccination.  But it’s not clear that this would be any worse than where we are now, with significant numbers of people opting out for dubious reasons, and old diseases (whooping cough, measles, etc.) making their rounds once again, even with mandates in place.

Tim Rubbelke is a PhD Candidate at the Saint Louis University Albert Gnaegi Center for Health Care Ethics. This essay was chosen as a finalist for the 2014-2015 Daniel Callahan Young Writer’s Prize. 

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[1] Goldberg, R. (2010). Tabloid medicine : how the Internet is being used to hijack medical science for fear and profit. New York: Kaplan Publishing.

[2] Interestingly, this is not the actual conclusions of the paper, but it is how Wakefield portrayed them in his numerous interviews following the publishing the study.

[3] Expression of concern: measles-mumps-rubella vaccination timing and autism among young African American boys: a reanalysis of CDC data. (2014). Translational Neurodegeneration, 3(1), 18. doi: 10.1186/2047-9158-3-18

[4] (Goldberg, 2010)

[5] (Goldberg, 2010)

[6] California makes for an interesting case study because it is one of the few states in which the PBE’s allow for “philosophical” objections as well as the commonly held religion based objections.  The interpretation of PBE’s is broad allowing almost anyone to get a waiver.

[7]  Ohio Votes to Nullify Insurance Mandates. (2011, November 8).   Retrieved November 13, 2011, from http://www.tenthamendmentcenter.com/2011/11/08/ohio-votes-to-nullify-insurance-mandates/

[8] Cannon, M. F. (2011, November 9). Ohio’s 2-1 vote against the individual mandate is a wholesale rejection of ObamaCare.   Retrieved November 13, 2011, from http://www.cato-at-liberty.org/ohios-2-1-vote-against-the-individual-mandate-is-a-wholesale-rejection-of-obamacare/

[9] GfK Roper Public Affairs & Corporate Communications. (2011, August). The AP-National Constitution Center Poll. from http://surveys.ap.org/data/GfK/AP-GfK%20Poll%20Aug%202011%20FINAL%20Topline_NCC_1st%20story.pdf

DNR Ebola: Is there a professional obligation to provide treatment?

By Avigile Baehr

Overhead pages are a staple of a busy ER. They give doctors and nurses a couple extra minutes to prepare for the quick action needed to save patients’ lives after strokes, heart attacks, or trauma. Now, imagine a case today:

Attention, ER staff. A 32 year old female at high risk for Ebola is coming in via ambulance with fever, vomiting, and unstable vital signs. If you are willing to accept the personal risk inherent in providing medical care to this patient, please report to room 3. Otherwise, please disregard this announcement.

A conditional appeal, not an imperative. A qualification that seems to run counter to the oaths that medical professionals take. And yet, a stipulation that hospitals and healthcare providers have considered as they decide how and whether to engage with this deadly infection. Ebola poses a very real threat to providers: two nurses contracted the virus while caring for a patient in Dallas, and California nurses have gone on strike in response to lack of preparedness for safely dealing with the infection. Given the disease’s documented transmission to healthcare providers, its high fatality rate, and the lack of an FDA-approved treatment or vaccine, what are our professional obligations in caring for these patients?

The classic principles of medical ethics are autonomy, beneficence, justice, and nonmaleficence. For the purposes of the ‘obligation to treat’ dilemma, I will assume that Ebola patients want to receive treatment, and I will not consider the ethics of experimental treatments as they might relate to the ‘do no harm’ principle. The principles of beneficence and justice, however, are particularly salient to this question. Healthcare providers are not merely obligated to do no harm, but we must also do good by our patients. Despite the uncertainty regarding some experimental treatments for Ebola, timely supportive care is unquestionably beneficial for these patients. Intravenous fluids help prevent shock and organ failure. Breathing tubes can keep patients alive until the virus runs its course. In certain cases, CPR can restart a heart and give someone a chance to survive. Fair and equitable treatment of Ebola patients requires that they be treated by the same clinical standards that apply to any other critically ill patient. By these core principles, the ethical imperative to provide medical treatment to Ebola patients is clear.

What argument can be made, then, for refusing to provide comprehensive medical treatment to a patient with Ebola?

Perhaps providers are only obligated by these principles once they accept someone as a patient. Can a doctor or nurse then ethically refuse to engage in a provider-patient relationship with someone suffering from Ebola, thus freeing him or her of any obligation to treat?

In routine medical care, maybe or maybe not. Most states have specific clauses that allow providers to refuse to provide certain treatment, such as abortion care, on the basis of moral objections. But, both the law and medical professional societies uniquely distinguish emergency situations as obligating medical treatment without qualification. The Emergency Medical Treatment and Active Labor Act requires that all hospitals who offer emergency care services and who receive any Medicare funding (read: the vast majority of US hospitals) evaluate and stabilize any patient who seeks medical care. This law was designed to prevent hospitals from refusing to treat uninsured or underinsured patients, but it also serves to promote fairness and ameliorate other treatment disparities. Similarly, the American Medical Association Principles of Medical Ethics dictates that physicians should be free to choose the terms in which they agree to provide medical care, except in emergencies. By virtue of their agreement to serve as medical professionals, providers implicitly engage in a patient-provider relationship with anyone who seeks urgent care at their facility.

But, perhaps there should be an exception for personal risk. A similar dilemma with concern for provider safety arose in the early days of the HIV/AIDS epidemic, but both the American Medical Association and the American Dental Association explicitly reaffirmed the duty to treat. Both professional societies appealed to fairness, stating that a patient should not be subjected to discrimination based on any characteristic, including disease status. There is a utilitarian argument to be made in support of this personal risk exception: if a provider treats and subsequently contracts Ebola from one patient, then that provider’s other patients might suffer. However, in the United States, healthcare associated transmission of Ebola remains an incredibly rare event, and a utilitarian analysis does not fall in favor of refusing to treat Ebola patients. Two of the 170+ people who had direct or possible contact with the three Ebola patients from Dallas contracted the virus, and no healthcare provider has died from Ebola transmission in the United States. To put this number in context, an estimated one in ten healthcare workers experiences a needle stick each year, placing them at risk for blood borne pathogens such as HIV and Hepatitis C. Providing care for sick patients inherently carries a certain degree of risk, but so long as providers are able to mitigate that risk through personal protective equipment and standard precautions, this does not excuse them from their professional responsibilities.

In conclusion, the basic principles of medical ethics unequivocally support treatment of Ebola patients. Ebola patients can present in critical condition and require timely medical care, thus placing them in the category of a medical emergency and further obligating providers and hospitals to accept these patients for treatment. Personal risk might be an important consideration, but the risk of transmission can be appropriately mitigated through proper protective equipment in the United States. Ebola patient in room 3? That announcement will never sound routine, but we must treat even these patients fairly and by the highest standards of medical care. 

Avi is currently an MD/MBE candidate at the University of Pennsylvania. She graduated from Vanderbuilt University in 2011 with a degree in biology and philosophy. This post was chosen as a finalist for the 2014-2015 Daniel Callahan Young Writer’s Prize. 

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.  

Medical Doctors Should Remain "Medical" Doctors

By Naomi Scheinerman

Earlier this year, Britain’s Faculty of Sexual and Reproductive Health, a faculty of the Royal College of Obstetricians and Gynaecologists (RCOG), issued guidelines establishing that the faculty’s Diploma qualifications include a “willingness to prescribe all forms of hormonal contraception, including emergency contraception, regardless of personal beliefs.” Though welcome to undergo the training, those who “hold moral or religious reservations about any contraceptive method,” will not be able to “complete the syllabus [rendering] candidates ineligible for the award of FSRH Diploma” - a legal requirement to practice obstetrics and gynecology in England. Though clinicians may abstain from both performing and counseling regarding abortions, they are required to provide full information on options for unplanned pregnancy and make “timely arrangements” for the patient to see a doctor who is comfortable counseling on abortions.

In this post, I will address three questions: Does the Faculty have the authority to issue guidelines on this matter? If so, are these the correct guidelines to issue? And should we make exemptions to those who hold conscientious objections for religious reasons?

Does the Faculty have the authority to issue guidelines on this matter?

The medical world offers numerous examples of authoritative bodies passing rules of ethical and appropriate treatment. For example, guidelines have codified that informed consent must be acquired from a patient undergoing a medical procedure or participating in a clinical drug trial. Another example: U.S. federal law (HIPPA) protects a patient’s privacy of personal health information such that doctors may not share information with others without the patient’s permission. The authority of the Faculty to issue program guidelines regarding its training is perfectly consistent with our expectations that the medical community governs practitioners’ medicine to ensure ethical and safe care. Medical care cannot be divorced from value judgments, and thus medical training must be considered alongside medical decision making.

Is requiring willingness to prescribe contraception an acceptable use of the Faculty’s power to dictate appropriate medical practice?

I argue that the job of prescribing birth control has become a central part of the job of a gynecologist, and it should be for a number of reasons. Birth control is an ethical and safe option. Women have the right to control their reproduction, and doctors therefore have an obligation to provide access to the means to do so. Patients do not have unlimited rights to services from their doctor - a doctor could and should refuse to operate on an individual who does not need to be operated on. Contraceptive access, in contrast, is not an extravagance, but rather is an important tenant of women’s health. More than just allowing her to regulate her period and perhaps mitigate the negative and uncomfortable experiences of her “natural” cycle, contraception allows women to practice family planning, which has far reaching implications for her overall wellbeing by affecting her job, income, relationships, social network, and status. These results may also be beneficial for her family relations and friendships, as well as, of course, the wellbeing of a child from a pregnancy she neither planned nor wanted. Furthermore, denying a woman access to birth control denies her valid medical desires. Granted, what constitutes a medical necessity is illusive: ultimately numerous medical and nonmedical treatments lead to better welfare and happiness, but it seems strange to classify them all as necessary. However, because birth control affects the body chemically and hormonally, it should be classified under the purview of medicine, and therefore falls within the medical profession.

Should we make exceptions for conscientious objectors, particularly religious conscience objectors?

Just as a conscientious objector to informed consent should be barred from conducting clinical trials, so too should a gynecologist who refuses birth control to women. First, the merits of an argument for conscientious objections must be evaluated, regardless of whether it is religious or nonreligious. One of the primary arguments against contraception is that they are akin to abortions and therefore immoral. This argument is invalid because it relies on a false claim: contraception prevents pregnancy, it does not terminate it. Take for example the anti-vaccine movement: when deciding whether to allow doctors to refuse to vaccinate children, we should only give weight to arguments that are based on scientific claims regarding the safety of vaccines.

Another argument given against contraception is that it increases the rate of casual sex, in particular sex out of wedlock. First, this is a faulty understanding of statistics: access to birth control neither increases nor decreases rates of sexual intercourse, but instead makes it safer. A similar argument was made in the case against the HPV vaccine trials: developing a vaccine that protects against certain kinds of cervical cancers would make girls more promiscuous. This value-loaded claim attempted to maliciously bar an important way to increase sex safety for women and was then proved to be factually incorrect. Even if contraception did increase the rates of sex, either before or after marriage, the argument must prove why this is negative.

Religious reasoning should be scrutinized as vigorously as nonreligious reasoning. For example, the value of having a family is often cited in opposition to contraceptive use by referring to religious texts. However, one could just as easily interpret the value of family in another way: birth control allows women (and their partners) to choose when to have a family, thereby making a more secure, safe, and well-off household. Religious preferences in the medical world should be tolerated only if they do not harm the patient’s welfare. Denial of birth control can and does cause such harm. Religious objectors claim that a patient could see a different doctor, but there are many examples in which this is unfeasible. For instance, a young teenager who wants to become sexually active and is hiding her doctor’s visit from her parents may not simply be able to switch physicians or may be too intimidated to try after being driven off the first time.

The Faculty’s rules are not only permissible, they are imperative for women’s health. They do not suggest that all women should seek birth control or will, nor do they demand that all gynecologists prescribe birth control to all women. Ultimately, the Faculty’s rules are valid because they demand that doctors provide ethically valid and vital medical options to their patients.

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.