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Author Archive: Bioethics Today

About Bioethics Today

Over the past decades, increasing emphasis on individual autonomy has led to the view that competent adults should decide for themselves how they want to be treated medically.  This shift in practice and policy has been accompanied by the adoption of advance directives that allow competent adults to specify in advance how they want to be treated, with the goal of extending respect for autonomy into periods of decisional incapacity.

Advance Directives are written instructions about health care treatment made by adult patients before they lose decision-making capacity.  These instructions are completed ahead of time and only apply when decision-making capacity is lost.  Examples of an advance directive are a health care proxy document and living will.  A health care proxy is a document that allows you to appoint another person as your health care agent to make health care decisions if you are no longer able to do so.  You may give your health care agent authority to make decisions for you in all medical situations if you cannot speak for yourself.  Thus, even in medical situations not anticipated by you, your agent can make decisions and ensure you are treated according to your wishes, values and beliefs.  A living will is a document that contains your health care wishes and is addressed to unnamed family, friends, hospitals and other health care facilities.  You may use a living will to specify your wishes about life-prolonging procedures and other end-of-life care so that your specific instructions can be read by your caregivers when you are unable to communicate your wishes.  A living will cannot be used to designate a health care agent, the health care proxy document must be used for this designation. 

An advance directive should be considered as a “gift” to a loved one, giving them peace of mind, minimizing stress, and reducing potential conflicts among family members.  This all starts with a conversation with family members and friends who are best likely to represent a patient’s wishes.  The conversation should clarify a patient’s values and beliefs, framing medical wishes around these values and beliefs and addressing questions such as:

v  What’s important to the patient

v  What contributes to the quality of life the patient may want

o   What activities are essential to having this quality of life

v  How does the patient want to spend their final years, weeks or days

o   What role does faith play in making these decisions

o   How much medical care is the patient willing to have to stay alive

o   What kind of medical risks is the patient willing to take

v  When would the patient want to shift from treatment to comfort care

The conversation should not end here as it’s impossible to predict every scenario.  But it is important to continue to share wishes and preferences; explaining views that will give loved one’s information to make decisions on behalf of the patient. 

One of the challenges this presents is that patients may not know what treatments they want in the future and many do not complete an advance directive.  When patients become unable to make or communicate crucial health care decisions for themselves, health care providers look to others to speak on behalf of the patient.  A health care agent is someone that has been designated by the patient to make health care decisions should the patient become unable to do so for him/herself.  Responsibility begins when the patient loses capacity (may vary by state).    What if the patient has not designated a health care agent and loses decision-making capacity?   In New York State, the Family Health Care Decisions Act (FHCDA) provides a hierarchy/highest priority class from which the provider must choose the surrogate.  The role of the surrogate is identical to that of the health care agent—to represent the patient’s expressed and implied wishes using the substituted judgment standard or if the patient’s wishes are unknown, using the best interest standard.  In the ideal scenario, the agent or surrogate is someone who has a close, loving relationship with the patient; someone who has intimate knowledge of the patient’s preferences and values; someone the patient chose or would choose to make health care decisions on his or her behalf; and someone with whom the patient had previously discussed preferences for care.

 The most important take away from this blog is that this all starts with a CONVERSATION.  Discussing with family or a loved one what is important to you, your values, beliefs, wishes, preferences.  Then frame your medical wishes/preferences around these values and beliefs. 

 

THIS MAY BE ONE OF THE MOST IMPORTANT THINGS YOU EVER DO FOR YOURSELF AND YOUR LOVED ONE’S!

 

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Children are not small adults. This is a phrase we say in pediatrics on a regular basis. The reason for such an absurd comment is that we are constantly faced with medical decisions that force us to rely on adult data to inform our practice. Pediatric patients face unique diseases and metabolize medications differently from adults. Their ability to recover from injury is often superior to their adult counterparts and thus the Quality Adjusted Life Years can be substantially different.  I argue that we have an ethical imperative to conduct pediatric research because 1. research brings forth generalizable knowledge for the good of the pediatric population and 2. because research guides clinical practice and the physician has a duty to provide the best possible care to the patient.

Research in human subjects is justifiable if it satisfies the following conditions: 1. A goal of valuable knowledge, 2. A reasonable prospect that the research will generate the knowledge that is sought, 3. The necessity of using human subjects, 4. Favorable balance of potential benefits over risk of the subjects, 5. Fair selection of subjects and 6. Measures to protect privacy and confidentiality. This list does not suggest any condition that could not be applied to pediatric research subjects as they all promote fairness, beneficence and non-maleficence. Typically, we do not consider clinical research as something that provides significant benefit to the individual subject. Generally, a clinical trial is initiated with equipoise on the efficacy for if not met with equipoise, there would be no need for the study as the outcome would already be known. Thus, if a clinical trial were to test the efficacy of a given medication, the human subject could benefit from being in the trial if the medication works OR could suffer from side effects and receive no benefit from participation. So, although there is potential for individual benefit after participating in the study, the main purpose is to benefit future patients and add to the general knowledge of the topic. A utilitarian approach would look at the potential consequences of pediatric research and determine it to be right or wrong based upon the balance of good or bad. Pediatric research must go through the same pathways as adult research with all human subjects’ trials needing to have a careful justification that the benefits outweigh the risks. Utilitarian theory is focused on value and thus the best action is the one who promotes the most good for all involved. This is precisely the goal of research. Research is conducted to affect change and improve care across a larger population. Through clinical practice, a physician may help hundreds to thousands of patients over the course of a career. However, through research, that same physician could affect the lives of thousands to millions of patients over the course of her life and far beyond. Therefore, in a carefully planned and executed pediatric clinical trial where the potential benefits outweigh the risks, the outcomes could be exponentially beneficial to the pediatric population, thus supported by a Utilitarian approach.

The physician takes an oath to promote the patient’s best interest and to avoid harm. Currently, the majority of treatments we provide to pediatric patients are not evidenced based because no clinical trials have been conducted to test that hypothesis. Therefore, each day we care for pediatric patients without evidence of treatment safety nor effectiveness, we are potentially causing harm. Pediatric researchers support a Kantian theory where morality is judged by their motives. Thus, if a researcher wants to conduct a clinical trial only for the fame from discovering the essential element and not because of a desire to promote good, this would not be a moral-worthy endeavor. Therefore, if we examine the physician’s obligation to her pediatric patient, a duty-based ethical theory would tell us to treat each of them with the best possible practice available. Research guides our clinical practice and help to ensure that we are minimizing harms and maximizing benefits. If we support a Kantian approach, in order to satisfy our obligations, we must utilize the available data to make the best possible decisions, and thus, the available data must come from clinical trials on pediatric patients to ensure scientific rigor.

One objection to pediatric research is that these patients are considered a vulnerable population, incapable of independent informed consent and at risk of exploitation. Due to this fear, special protections have been placed on pediatric research leaving an even more limited pool of subjects in which to study. This is justified by some stating that we should proceed with caution and only permit research when the potential for benefit is extremely likely. However, if the criteria are too narrowed, we risk excluding potential participants from research and unjustly diffusing the risks to a non-uniform population. Rights Theorists would protect the pediatric patient against oppression, unequal treatment, etc. Therefore, upholding the decision to conduct pediatric research allows for the rights of all patients to be upheld and for providers to contribute to the overall body of science, thus practice safer and more effective medicine to the benefit of all patients. When we practice medicine on children without data, we are unnecessarily exposing them to the same risks we fear and are doing so without the oversight and protection imbedded in clinical trials.

In conclusion, I support that pediatric research is both essential and ethical as it 1. generates a generalizable body of knowledge to the benefit of the pediatric patient of the future and 2. clinical practice is best guided by empirical data conducted through research. Clinical ethics outlines our responsibilities as physicians to our patients including veracity, privacy, confidentiality, and fidelity while upholding our role as a clinician. In contrast, research ethics contributes to the greater good by promoting generalizable knowledge for all future patients.

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Last month, PBS aired the remarkable documentary College Behind Bars. This four-part film follows men and women incarcerated in New York state as they make their way through a rigorous liberal arts degree program offered by Bard College. The Bard Prison Initiative is one of several programs offering college classes within the U.S. correctional system – a system which carries the dubious distinction of holding nearly twenty-five percent of the world’s prisoners. (The U.S. comprises 5% of the world’s population).

I have taught courses in several prison higher education programs, including a course on bioethics.  People have often asked me, “what is like to teach ethics to prisoners?”  While I understand their curiosity, I dislike this question. Teaching in prison does differ from teaching on campus in a number of important ways – most saliently, through restrictions on classroom technologies. But the question implies that there is something special or different about teaching morally-laden subject matter to students who have been convicted of serious and sometimes violent crimes. People are not inquiring about the impact of the prison environment on teaching and learning bioethics, but rather about people in prison as moral beings. The question suggests that prisoners are somehow morally different than those of us on the outside.

In fact, people in prison are us. One in two Americans have a family member who has spent time in jail or prison. Those of us who have not are likely white and/or financially well-off, as mass incarceration has disproportionately targeted low income communities and people of color.  As Evelyn Patterson notes, people in prison “represent a small proportion of those who commit delinquent acts. Prisoners are people are the people who were caught, indicted, and punished via incarceration.” (Think of the example of sexual violence, a crime experienced by more than 1 in 3 women and nearly 1 in 4 men in the United States. The vast majority of perpetrators do not even enter the criminal justice system, much less serve time).

That said, I did find that teaching bioethics in prison differed from teaching bioethics on campus, and not just because I couldn’t stream video clips or email my students. Incarcerated students are immersed within the ethically fraught ‘total institution’ of the prison, a space anthropologist Lorna Rhodes described as “designed to activate a sense of threat to the coherence of the self” (2004, 56).  Students were living and witnessing the moral failures of mass incarceration on a daily basis. When they sought medical assistance, they faced the bioethical challenges of delivering and receiving care in a context of punishment.  These challenges occur at all levels of the health care system, from the micro-level of clinician/patient trust to institutional and society-level questions about access to and deservingness of treatment.  In future posts, I’ll be addressing some of these ethical challenges more specifically, as well as exploring social and historical issues related to health and mass incarceration. 

 

In the meantime, PBS will be streaming Prison Behind Bars for free through late January. 

 

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Last month, PBS aired the remarkable documentary College Behind Bars. This four-part film follows men and women incarcerated in New York state as they make their way through a rigorous liberal arts degree program offered by Bard College. The Bard Prison Initiative is one of several programs offering college classes within the U.S. correctional system – a system which carries the dubious distinction of holding nearly twenty-five percent of the world’s prisoners. (The U.S. comprises 5% of the world’s population).

I have taught courses in several prison higher education programs, including a course on bioethics.  People have often asked me, “what is like to teach ethics to prisoners?”  While I understand their curiosity, I dislike this question. Teaching in prison does differ from teaching on campus in a number of important ways – most saliently, through restrictions on classroom technologies. But the question implies that there is something special or different about teaching morally-laden subject matter to students who have been convicted of serious and sometimes violent crimes. People are not inquiring about the impact of the prison environment on teaching and learning bioethics, but rather about people in prison as moral beings. The question suggests that prisoners are somehow morally different than those of us on the outside.

In fact, people in prison are us. One in two Americans have a family member who has spent time in jail or prison. Those of us who have not are likely white and/or financially well-off, as mass incarceration has disproportionately targeted low income communities and people of color.  As Evelyn Patterson notes, people in prison “represent a small proportion of those who commit delinquent acts. Prisoners are people are the people who were caught, indicted, and punished via incarceration.” (Think of the example of sexual violence, a crime experienced by more than 1 in 3 women and nearly 1 in 4 men in the United States. The vast majority of perpetrators do not even enter the criminal justice system, much less serve time).

That said, I did find that teaching bioethics in prison differed from teaching bioethics on campus, and not just because I couldn’t stream video clips or email my students. Incarcerated students are immersed within the ethically fraught ‘total institution’ of the prison, a space anthropologist Lorna Rhodes described as “designed to activate a sense of threat to the coherence of the self” (2004, 56).  Students were living and witnessing the moral failures of mass incarceration on a daily basis. When they sought medical assistance, they faced the bioethical challenges of delivering and receiving care in a context of punishment.  These challenges occur at all levels of the health care system, from the micro-level of clinician/patient trust to institutional and society-level questions about access to and deservingness of treatment.  In future posts, I’ll be addressing some of these ethical challenges more specifically, as well as exploring social and historical issues related to health and mass incarceration. 

 

In the meantime, PBS will be streaming Prison Behind Bars for free through late January. 

 

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Reproduction is generally associated with women and consequently men’s reproductive is often neglected. One clear example of this is the discrepancy in female and male contraceptives. Women have over a dozen types of contraceptives, including hormonal, nonhormonal, barrier, and long-acting reversible contraceptives. In contrast, men have only 2 options: vasectomy and condoms. Men do not have hormonal methods, nor do they have long-acting reversible contraceptives, both of which tend to be the most effective and often the easiest to use (e.g. methods like the IUD you can “set and forget” for years). This discrepancy in options means that most heterosexual couples rely on female methods, an arrangement not only burdens women, but it also reduces men’s reproductive autonomy. I have argued that we need more and better male contraceptives as a matter of “contraceptive justice.”

Unfortunately, in the field of reproductive medicine, this discrepancy in options between women and men is not limited to contraception. There is also a similar injustice at play with infertility treatment. There are various options for women with female factor infertility, including medications to stimulate ovulation, intrauterine insemination (IUI), and IVF. All these treatments target women’s bodies: causing ovulation, facilitating meeting of an egg and sperm, and increasing the probability of implantation. For IUI and IVF, men need to contribute sperm and therefore are also affected bodily for these interventions. However, the vast majority of men provide sperm via masturbation, which is typically not understood as a medical procedure. (For men who cannot produce sperm via masturbation, medical intervention may be necessary such as electroejaculation.) While it may be awkward for men to masturbate in a medical office in order to produce semen, it does not carry the same degree of physical harm as the procedures required for women (though there can be psychological harms for both). For instance, there are a variety of unpleasant side effects, such as bloating and nausea, that are common with hyperstimulation drugs and there can be more serious and even deadly side effects, though they are rare.

Currently, the only type of infertility treatment that directly addresses male factor infertility is intracytoplasmic sperm injection (ICSI) in which a sperm is directly inserted into an egg. In order to perform ICSI, a woman must first undergo hyperstimulation followed by egg retrieval. As previously mentioned, these medical treatments are invasive, often have negative side effects, and target women’s bodies. There are no medical treatments for male factor infertility that directly targets men’s bodies. The fact that women need to undergo medically invasive and unpleasant procedures to treat male factor infertility raises justice concerns. Some may object and claim that of course women must undergo treatments since (cis)women are the ones who experience pregnancy. However, we can imagine medications and treatments that directly target men’s bodies to address male factor infertility. While women have hyperstimulation medications available to them if they are “sporadic” ovulators, there is no equivalent medication for men who is not producing adequate sperm or have problems with sperm motility.

Part of the reason we do not have infertility treatments that target men’s bodies is the same reason we do not have male contraception – reproduction and women are generally conflated, and men’s reproduction is frequently overlooked. Elsewhere I have discussed the various gender norms at play in why we do not yet have hormonal or long-acting reversible male contraceptives. I believe some of the same reasons are at play here. For instance, the field of andrology did not emerge until the late 1960s and scientists did not start investigating male hormonal contraceptives until the 1970s, about 50 years after they began researching female hormones contraceptives. Without a strong foundation in men’s reproductive biology, and without money invested in this research, it is difficult for scientists to discover infertility treatments at target men’s bodies. Also, there was a historical belief that if men were virile (i.e. they could maintain an erection and ejaculate), then they were fertile. Women were assumed to be the cause of infertility and we can see this reflected in our language. We see references to a “barren womb,” but I’ve never encountered an equivalent for men, such as a “barren scrotum.” The idea of barrenness is closely associated with women because reproduction is considered a “women’s issue.” And this explains and perpetuates the lack of attention paid to men’s reproduction.

Until we can explicitly recognize that men also experience infertility – and at similar rates of women – and that this is a topic worthy of research, we will continue to not have options for men with male factor infertility. As with contraception, without infertility treatments that target men’s bodies, women will continue to bare the various, particularly the physical, burdens of infertility treatment and men’s reproductive autonomy will be diminished.

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While watching a television commercial from one of the world's largest pharmaceutical companies I suddenly heard something that attracted my attention. I am generally quite good at ignoring commercials and especially good at ignoring drug commercials because of their endless lists of side effects (this drug may cause sudden hideously painful death) among other uninteresting features. Thus, it has come a surprise that I appeared to hear the statement “This is why we science.” This is the new tag line from a series of commercials from Bayer Pharmaceuticals. These are not merely commercials that are trying to get us to buy aspirin but rather to make them appear to be contributing to our wellbeing in a much broader and more fundamental sense. What was it that caught my attention? It was a bit of cognitive dissonance. The dissonance occurred because they used “science” as a verb. Throughout my entire life “science” has been a noun. I am not merely a casual observer of science. I am a scientist and have been a scientist for half a century. Surely if science was a verb, I would have noticed it previously. But no, now that I find myself grey haired and eligible for social security this noun to which I have devoted my professional life to is suddenly a verb. Moreover, it appears that all that is necessary to convert a noun to a verb (should we call this verbification?) is for a multinational corporation to spend millions of dollars on a high-profile advertising campaign using it as a verb. I should note as an aside that “verbification”, which I thought I had just made up, is actually a word, in fact a verb. I am not exactly sure why it bothers me that Bayer has verbificated science, but it does. Where does this end? I have already created words while writing this blog. All I have to do is write them down and when my spell checker objects, I simply click “add to dictionary”. Then my spell checker accepts them as words, they will appear in the published blog, and perhaps you will accept them as words. Perhaps. I am wondering now if during that part of my job where I act as an ethicist do I actually “ethic”? I am not sure so I will have to be satisfied for now with raising the question. And so, I leave you with another question. Do I write blogs, or do I blog? Perhaps it does not really matter.

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The debate over conscientious objection in health care has been lively since the passage of the Church Amendment in 1973.  The dilemma arises as bioethicists, theologians, legislators, and lawyers have argued over the proper balance between protecting clinician integrity and the professional obligations of medicine.  Two major developments have made this a big year for conscientious objection and LGBTQ rights.  One development has been the Supreme Court hearing of three cases arguing that the word “sex” in the Civil Rights Act can be interpreted as prohibiting discrimination based on gender identity and sexual orientation.  Currently, the legality of discrimination based on these characteristics hinges upon whether the state in which the event occurred has individually decided to prohibit such discrimination.  Whether refusing to treat LGBTQ individuals is federally prohibited is especially relevant because of a second major development this year in the new “Final Rule” proposed by the Trump administration for protecting conscientious objection issued by the Office of Civil Rights in the United States Department of Health and Human Services in May of 2019.  This Final Rule significantly expands the scope of who can object, what can be objected to, and the enforcement mechanisms for organizations that violate federal conscience statutes.    

            Several states have filed legal complaints against the proposed Final Rule.  In the complaints, one concern is that the Final Rule interprets the plain language of existing federal statutes in very broad terms.  For example, on the issue of who can object, the rule covers any individual who performs any action with an “articulable connection to furthering a procedure.”  This means someone involved in administrative or transportation activities—not just those directly involved in the procedure—may invoke conscientious objection.  The final rule also permits clinicians to object to giving referrals if they feel doing so would make them complicit in an act they deem morally objectionable and does not consider how objections cause undue hardships on employers, co-workers, and patients.  The San Francisco complaint reads, “If an individual were to believe that transgender people should not transition, it would empower them to refuse to provide any health-related service to a transgender patient, such as medical bill process or scheduling an x-ray for a broken leg.  If a nurse were to oppose a same-sex couple’s marriage, the Final Rule would allow the nurse to refuse to let one spouse see the other in the hospital.  If an individual claims that their moral convictions do not allow them to assist LGBTQQ persons, the individual could refuse to even set up a room where an LGBTQQ patient would be receiving services.”  In early November of 2019, a federal judge ruled against the Final Rule, but this is unlikely to be the final word in the debate. 

            The examples above are not merely hypotheticals; conscience-based discrimination against LGBTQ individuals in health care has occurred in recent decades.  In 2001, a fertility clinic in California turned away a lesbian couple for IVF procedures (Benitez v North Coast Women’s Care Medical Group).  In 2008, the California Supreme Court unanimously ruled that such action was discriminatory and ruled in favor of the couple.  However, this ruling was based on California’s Unruh Civil Rights Act, which prohibits discrimination based on sexual orientation and gender identity, so it is unclear how the case would have been decided in states without similar augmentation to the federal Civil Rights Act.  In 2015, a pediatrician conscientiously objected to treating the baby of a lesbian couple (Jami Contreras and Krista Contreras), stating “After much prayer following your prenatal (visit), I felt that I would not be able to develop the personal patient doctor relationship that I normally do with my patients.”  In 2018, the physician of a bisexual male patient conscientiously objected to prescribing the HIV preventative PrEP because he did not want to “enable immoral sexual behavior.”  The objection caused a significant delay in the patient receiving the prescription (~4 weeks), but another physician at the clinic eventually stepped in and prescribed the medication. 

             The intensity of debate around conscientious objection and LGBTQ rights is only likely to increase as technological advances raise even more medical possibilities for this patient population.  Puberty blocking medications, hormone therapy, gender-affirming operations, and even coming fertility technologies such as uterine transplants for transwomen and the use of synthetic gametes for same-sex couples to have biologically related children are all likely to keep this an active topic for bioethics debate.     

 

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The topic of childhood vaccination has become increasingly tendentious in recent years.  While ‘vaccine hesitancy’—a term that encompasses a wide range of attitudes, from those who have some misgivings about vaccination to those who refuse all vaccinations for their children—has existed ever since Edward Jenner developed the smallpox vaccine in 1798, many point to a now retracted 1998 paper in The Lancet as the origin of today’s particular brand of vaccine hesitancy.

In the United States, there are three ways by which a child can be exempt from vaccination.  State laws differ with regard to which types of exemptions are recognized.  In five states, the only children who are exempt from vaccine requirements are those with medical exemptions, meaning they must have a medical condition that makes their receipt of a vaccine contraindicated.  The remaining 45 states also authorize religious exemptions, whereby parents can refuse to have their children vaccinated on grounds that vaccination goes against their religious beliefs.  And fifteen of these states further recognize a philosophical exemption, whereby parents can refuse vaccination by appeal to its discordance with their non-religious beliefs.

Recent outbreaks of measles in the U.S. have prompted some states to reconsider their policies on non-medical exemptions. Earlier this year, New York joined Maine, California, Mississippi, and West Virginia in implementing legislation that eliminates religious exemptions for children in childcare centers and classroom-based schools.  Those with an unvaccinated child entering kindergarten had two choices: initiate vaccination for the child (and ensure that the child is up to date by the end of the school year) or remove the child from the school.  Those who select the latter option must then decide whether to home school or move to a different state.

Supporters of the legislation claim that the law will ensure that vaccines’ immense public health benefits are actually realized.  Critics of the law claim that it infringes on personal and parental rights, favoring the interests of the public over the rights of individuals.  And then there are those who fall in the middle—they are supportive of the law’s aims but skeptical of the law’s methods and/or efficacy. 

There is evidence to suggest that skepticism about the law’s efficacy may be warranted.  In a 2018 article in Pediatrics, Delamater et al. study the effects of a 2016 law in California that eliminated all non-religious exemptions to vaccination.   The authors found that an initial decrease in the percentage of unvaccinated kindergarteners in the first year of the law’s effect did not persist into the next year.  They point to phenomena like fraudulent use of medical exemptions, the presence of grandfather clauses, and inconsistent enforcement of the rules as reasons for the law’s limited effects.  They also suggest that the initial decrease in unvaccinated kindergarteners might be explained by something other than the legislation. 

In light of this, what ought researchers and policymakers do?  First, further data collection is key; with the passage of similar legislation in Maine and New York this year, we will have more data to analyze in the next few years to begin to understand the efficacy of these laws.  But it is also worth considering what other policy strategies are available.  Further brainstorming is prudent not only because of the limited efficacy of the current laws but also because some states are unlikely to pass this type of legislation.

What might some of these alternatives look like?  Stay tuned—I’ll discuss one possible strategy in my next blog post.  

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Last month, I was honored to be named one of the BBC 100 Women of 2019, which is a list they compile each year of inspiring and influential women. The list includes women from around the world of all ages (from teenagers to nonagenarians) and various professions. People from around the world will be familiar with the names of some of the women, such as Alexandria of Ocasio-Cortez, Megan Rapinoe, and Greta Thunberg, while other women will be new to the world stage.

This year’s theme was the female future and some of the 100 Women were invited to London or Delhi to answer the question, “What would the future look like if it were driven by women?” In my talk, I claimed that a future driven by women would engender more male contraceptive options. Currently, women are responsible for the vast majority of contraception and have over a dozen contraceptive options, whereas men have only 2 options – condoms and vasectomy – and under 10% of women worldwide rely on male methods. The introduction of “the pill,” which was the first long-acting, reversible contraceptive and the first hormonal contraceptive, was a significant milestone in women’s rights since it allowed women to effectively control their reproduction without their partners’ knowledge or involvement. It is important for women to have a variety of contraceptive methods available so they can control their fertility yet being the main ones responsible for contraception also comes with a variety of disadvantages, including physical, emotional, social, financial, and time-related burdens. Additionally, the lack of male contraceptive options inhibits men’s reproductive autonomy.

The goal of my talk was to enumerate the factors that have led to our current contraceptive arrangement so that we can figure out how to move towards a future with more male contraceptive options. I discussed three factors that have led to the disparity in contraceptive options for women and men. First, we tend to overlook men's reproduction. When people think of reproduction they typically think of pregnant people and that generally means women. The conflation of women and reproduction reinforces the alignment of contraceptive responsibility with femininity. Second, there is not sufficient funding to bring male contraceptives to market. Pharmaceutical companies aren't interested in male contraceptives because they assume that men aren't interested in contraception and that women won't trust men.  Third, side effects common in new male contraceptives, which are similar to the side effects in female hormonal methods (e.g. weight gain, diminished libido, etc.), are considered emasculating and therefore unacceptable.

In order to have a future with new male contraceptives, we need to change gender norms. I discussed three areas where we are moving towards more gender equality, but need to continue to head down this path in order for new male contraceptives to become reality. First, we need to continue to make more progress on unpaid household labor: although women still do more household work like taking care of children, doing laundry, and cooking dinner, men today are doing much more than they did even a few decades ago. Taking the male pill is a natural extension of men's increased household and childcare involvement. Second, we have to change gendered perceptions about contraception. Contraception is typically thought of as “women's work,” but we need to reframe it as something that men can and should participate in too. Third, we also need to do a better job teaching about sex in general and specifically regarding LGBTQ rights and consent. Shared contraceptive responsibility fits in with a more comprehensive approach to sex education that values inclusivity and benefits all types of couples, not just those in the heteronormative paradigm. Shared contraceptive responsibility reinforces consent by conceptualizing sex is a joint endeavor that both parties need to contribute to and be responsible for.

I am hopeful for future with more male contraceptive options because I think it will decrease unmet contraceptive need worldwide, unburden women from bearing most of the responsibility for contraception, increase men's reproductive autonomy by giving them more options and, overall, it will advance gender equality.

For more on this topic, see my recent article in BBC Health News, “Are We Ready for Men to Take the Pill?”

 

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Sometimes patients who lack decision-making capacity refuse treatment that would be in their best interests. Imagine, for example, a patient suffering from acute schizophrenia who adamantly and persistently refuses to take antipsychotic medication that would relieve his symptoms. And suppose, further, that this patient poses no danger to himself or others, but that his mental illness prevents him from understanding his diagnosis as well as his likely prognosis with and without the treatment. Should a provider treat such a patient over his objections?

 

My reflections begin with the observation that in most cases of this kind, physicians tend to respect the patient’s incapacitated refusal, either by honoring it, or, at the very least, by treating it with great seriousness. Why? The simple answer is a legal one: in New York and many other states, it is against the law to treat patients over their objections except in cases in which the treatment will prevent them from endangering themselves or others. My interest here, though, is ethical rather than legal: what ethical justification can we offer for this practice?

Answering this question is challenging in part because honoring incapacitated refusals is not obviously justifiable by appeal to any of Beauchamp and Childress’s famous four principles of biomedical ethics: The decision to honor an incapacitated refusal has nothing to do with the fair distribution of benefits and burdens, and so it is not a matter of justice. Nor can it be justified by appeal to beneficence or non-maleficence, as allowing the patient to forgo treatment would make him worse off. The principle of autonomy does not provide support for honoring the refusal, either, at least on a classical understanding of “autonomy.” This is because autonomy is traditionally understood to involve more than the mere ability to do what one happens to want at a given moment. Rather, autonomy is a matter of rational self-governance: it requires a baseline level of understanding of one’s situation, one’s options, and the possible consequences of selecting one of those options. The right of autonomy is a right to make otherwise permissible decisions without the influence of distorting factors, such as intoxicating drugs, false and misleading information, and coercive threats. Severe mental illness is one of these distorting factors insofar as it prevents a patient from making informed decisions that express his values. In the case I began with, the patient did not understand either his diagnosis or his prognosis, he did not have a good grasp of his options, and he was in no position to weigh different courses of treatment and assess their compatibility with his goals and ideals. Indeed, we may even suppose that treating such a patient over his objections would be the only way to restore his capacity for autonomous self-governance.

To be clear, I am not making the case that we ought to override all incapacitated refusals. I do not believe that we should. My point here is that strict adherence to the four-principle model would make it seem as though we obviously should. After all, beneficence would strongly recommend overriding an incapacitated patient’s wishes, and none of the other principles would recommend honoring them. But this apparent clarity is a mirage: the choice of whether to honor incapacitated refusals is plainly a difficult one, and this difficulty is reflected in the seriousness with which our practice and law approach them. Indeed, in their handbook, Addressing Patient-Centered Issues in Health Care, the American Society for Bioethics and Humanities explains that the strenuous objections of incapacitated patients “should be given ethical weight, and sometimes considerable, or even definitive weight.”

This weightiness is evidence of an unexposed value. Like autonomy, this value seems to demand a kind of interpersonal respect. Unlike autonomy, the capacity we are supposed to value and respect is not a capacity for self-governance in light of a basic understanding of relevant information and one’s goals. Whether one articulates this hidden value as a novel “form” of autonomy that has nothing to do with informed self-governance, or as something altogether new, is not important. No matter what we call it, we must explain exactly what this value is and why we ought to take it seriously. That is the heart of the challenge.

This is a task that I am beginning to undertake as part of my research here at AMBI. By the time I write my next blog post, I hope to be able to share at least some progress toward an answer. 

 

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