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>.

Congratulations Finalists

Thank you to every person who submitted to the Daniel Callahan Young Writers Prize! There were nearly thirty excellent submissions and the five finalists have been chosen. 

Their essays will be read by the following panel of judges:

Daniel Callahan, PhD-- As President Emeritus and co-founder of The Hastings Center, Callahan helped shape the bioethics field. He has written over 47 books and has had hundreds of peer-reviewed publications and op-eds. 

Michael K. Gusmano, PhD-- Gusmano is a a political scientist who holds adjunct appointments at Columbia University and Yale University and is a Research Scholar at The Hastings Center. He has published widely in the areas of health policy, aging, and comparative welfare state analysis.

Laura Haupt, M.A.-- Haupt is the Managing Editor for two peer-reviewed bioethics journals, the Hastings Center Report and IRB: Ethics and Human Research. Her background is in English literature and she has helped edit a number of special reports for the Hastings Center Report, including LGBT Bioethic: Visibility, Disparities, and Dialogue. 

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Daniel Callahan Young Writer's Prize Finalists

Avigile Baehr, MD/MBE Candidate, University of Pennsylvania

"DNR Ebola: Is There a Professional Obligation to Provide Treatment?"

Michelle Bayefsky, Pre-Doctoral Fellow, NIH Department of Bioethics

"Uterine Transplant: Where, If Anywhere, Should We Draw the Line?"

Rachel Conrad, MD Candidate, Baylor College of Medicine

"The Ethical Crisis in Medical Training"

Michael DiStefano, Research Assistant, University of Pennsylvania

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

Tim Rubbelke, PhD Candidate, St. Louis University Center for Healthcare Ethics

"The Paradox of Government Vaccine Mandates" 

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We anticipate an announcement of the winner in mid-January. Thank you again to all the participants, we look forward to posting some of the other compelling submissions to this blog in the coming months. There were far more fantastic entries than could be chosen. 

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.