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. 

---

[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>.

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.

Reevaluating Mandated Reporting: A Case Study in Sexual Assault

By Douglas Meyer

In light of recent personal events, I have been forced to reevaluate my views on mandated reporting. By mandated reporting, I am referring to the collection of laws and professional codes of conduct that force people to file a variety of reports for situations including, but not limited to, child and elder abuse, sexual assault and self-harm. While the specifics of the situations that must be reported vary widely, a general theme is that an adult must report any risky situation they observe in a professional capacity so that those involved can get necessary help. What follows should not be taken as a comprehensive argument against mandated reporting, but rather as a suggestion for why “getting someone the help they need” is not strong enough to warrant mandated reporting.

Imagine a sixteen year old, we’ll call him Sam, who was recently sexually assaulted. Sam is showing mild signs of depression and has night terrors almost every night as a result of the assault. He knows that some psychological help may prove beneficial, but is unwilling to forfeit his privacy, even if necessary to get the help he needs. I’m going to make a few assumptions for the purposes of analyzing Sam’s case:

1.     Sam’s peers would be supportive, but lack sufficient training to help him.

2.     Sam’s high school has guidance counselors who are well trained in helping sexual assault survivors.

3.     Sam would not be able to afford a psychiatrist without financial assistance.

One of Sam’s options would be to seek the help of a Mental Health Professional (MHP). For the purposes of this discussion, I will define an MHP as a person who has received extensive training in offering psychological assistance and who maintains patient confidentiality. This would be Sam’s best chance of getting the help he would need for his depression and night terrors because the mental health professional would be able to help Sam work through his traumatic experience. In addition, this option would let Sam maintain his privacy, since the only person who would find out about his experiences would be the MHP. Unfortunately, Sam would likely need to explain why he was in need of an MHP to his parents in order to receive their financial assistance. Sam’s unwillingness to forfeit his privacy coupled with his inability to afford an MHP on his own means that this option is unavailable to him.

There are likely only two free options available to Sam. First, are anonymous helplines (AHs) which include services such as online support groups and hotlines Sam could use. AHs would be helpful to Sam, but they would only be beneficial as supplements to other forms of help. Most support groups are comprised of well-meaning peers who bond over shared tragedies, but without sufficiently trained professionals included, they just do not have the capacity to provide all the help Sam needs. Hotlines are very often staffed by volunteers who have minimal training to provide basic guidance and support to callers, but these volunteers would only be able to guide Sam in finding MHPs and another type of assistance, which will be discussed momentarily. As a result, AHs could provide Sam with a lot of support, but only supplementally.

The other possibility would be a cluster of psychological services, which I’ll call Nonconfidential Psychological Agents (NPAs.) As the name suggests, NPAs are services and people, including school guidance counselors and teachers, who cannot offer their clients confidentiality because of their mandated reporting obligations. NPAs can be assumed to have sufficient training to provide Sam with the help he is seeking, and I’ll assume that there are sufficient NPAs available at little to no cost such that cost would not be a barrier to Sam.

Unfortunately for Sam, these three options are insufficient to deal with his case. Option 2 (AHs) would only be able to provide supplementary assistance, but on its own, couldn’t provide Sam with the necessary assistance. Options 1 and 3 (MHPs and NPAs, respectively) would be able to provide the necessary assistance to Sam. However, option 1 would be inaccessible to Sam due to financial barriers.

Earlier, I mentioned that my interpretation of the purpose of mandated reporting was to get someone the help they need. However, this would seem to fall apart when applied to Sam’s case. Mandated reporting does nothing to alleviate the financial burden associated with psychological counseling, and so it would not make MHPs a valid option to Sam. Mandated reporting does have a very strong effect on Sam’s access to NPAs. By preventing NPAs from protecting client confidentiality, mandated reporting actually acts as a barrier to these services. Ironically, the program that was implemented to get people help actually prevents many people seeking counseling from accessing those services. Moving forward, programs that promote access to counseling, like financial assistance programs, should be considered as replacements for mandated reporting strategies.

Douglas Meyer recently completed his first year at UCLA studying microbiology and the intersection between advancements in biology and society. Next fall, he will serve as Co-president of UCLA's Undergraduate Bioethics Club.