Thinking Ahead, Preventing Tragedy

By: Mohini Banerjee

When natural disasters become central to bioethics discussions, it usually invokes a public health lens. Furthermore, the ethics involved concern disaster response, otherwise known as the aftermath. As detailed in Sheri Fink’s Five Days At Memorial, ethical quandaries arose when they were unable to evacuate certain patients from a flooded hospital. Health care professionals faced the demand to both create and execute a moral equation determining who could survive if moved and who would most likely survive. In the midst of Hurricane Katrina’s wrath, some doctors euthanized patients that could not be evacuated, saving them from languishing in agony as their machines failed. These physicians had some ethics training, but nothing that could have prepared them for that situation.

If we had to make difficult decisions in the midst of a disaster, what would we choose? During Hurricane Katrina many also took to the streets to find food and services when no help came. This led to horrific police and civilian violence. The racial and socio-economic implications of the fallout in the Gulf states only add to the tragedy. Although there are immense problems with the response to Katrina, we must also consider disaster preparedness. Foresight and energy could preempt and thus mitigate many of the worst disaster outcomes.

One difficulty in the ethics of disasters, as opposed to issues that arise in clinical settings, is that one cannot assume a controlled environment. There is no time to consult an ethics board, family members, or the courts. Disaster situations involve technological and communication failure on massive scales, such as falling telephone lines and power outages. Health care professionals also grapple with their own safety in ways foreign to most instances of medical care. For example, as Fink outlines in her book, many of the doctors at Memorial struggled with dehydration and injuries themselves from the hospital conditions. Lastly, national and state-based plans often cannot be implemented on the local level, lacking a detailed understanding of the community’s needs. For all these reasons, work done ahead of time could insure fairer outcomes in the aftermath.

Disaster preparedness is not a new phenomenon, and it would be foolhardy to dismiss the long efforts to mitigate ensuing chaos. Yet, in the world of ethics, how we prepare is less discussed than what happens when the chaos is in full force. What I suggest is a closer look at the methods for protecting ourselves and our communities when the unimaginable hits. The principles that govern disaster response, such as the responsibility to provide each person with life-saving care and protection, will only go so far. Since disasters often undermine the infrastructure facilitating medical care, evacuation, or housing, it is especially important to implement community-based initiatives to meet these needs.

The San Francisco partnership, established by Mayor Edwin M. Lee this past summer, epitomizes a community ethic in disaster preparation. It is a coalition between the Department of Emergency Management and Bayshare, a collection of sharing economy organizations. The partnership insures that during disasters people could use sharing economy mechanisms for free. Services include Lyft, a ride-share service that would transport emergency medical care and basic supplies. Another is the room rental scheme, Airbnb, which provides housing for people with nowhere to go. Providing these services in a disaster’s fallout would use the community’s resources to help itself. The San Francisco model demonstrates how members of the local community could use their resources to aid one another.

Although internationally recognized ethics standards for disaster response exist, preparedness is seldom discussed considering equality or fairness. Oftentimes preparing for disasters is left to the government or to the individual, such that those with less lose out. Further, the obligations of individual families extend beyond themselves and complying with the government’s safety measures. Strategies, such as San Francisco’s, which distribute much needed and underutilized resources facilitate a community’s ability to help itself.

It is not only preferable, but ethically necessary, to have a system in place that ensures sharing resources. Governmental bodies should not be the sole providers of resource planning. Community members understand best what is available locally and are situated to help first responders prevent harms within a chaotic situation. While each person will first provide for her own family’s safety, the next considerations should extend to those in one’s proximity. Preparing as a community will help foster social cohesion, which again feeds back to those difficult decisions. Gaining more responsibility for ourselves and for those around us can avert the desperation that so many have already suffered.  

Mohini graduated from Smith College in May 2013 and is a research assistant at The Hastings Center, an independent non-profit research institute in bioethics. She founded Bioethx Under 25 in January and acts as Editor in Chief. For interest in the blog please email her at bioethicsunder25@gmail.com.

Lowered Abortion Rates: Good or Bad Sign?

By: Naomi Scheinerman

On Monday, February 3, 2014, the Guttmacher Institute published a study revealing that U.S. abortion rates are the lowest since the Supreme Court upheld the right to have an abortion in Roe v. Wade (1973). Although the study did not investigate reasons for the decline, it concludes that it was not due to the surge of abortion access restrictions passed from 2011 to 2013, nor was it due to a decreased number of providers. The authors also found that there was a proportional increase of early stage abortion inducements to later surgical procedures.

So, what can we conclude about the study? Why have abortion rates gone down? And, how should we feel about lowered abortion rates? Is this a good thing? What might this indicate about our society?

The Guttmacher Institute’s overarching goal is “to ensure the highest standard of sexual and reproductive health for all people worldwide.” Do lowered abortion rates mean that women are achieving a higher level of sexual and reproductive health in connection with the Institute’s goals? On the one hand, women should have access to means of contraception: the pill, condoms, IUD’s, etc. On the other hand, women should also have access to abortions. It seems that lowered abortion rates indicate a rise in access to contraception, increased freedom for women, and overall awareness of rights, access, and sexual health. So, abortion rates lowering (when it is not due to restrictions or scarcity of providers) is a good thing.

If we peer further, are lowered abortion rates beneficial for reasons other than their indications of other rights (access to contraception) in society? In other words, could they be ethically preferable? 

What differentiates an action between being ethically preferable and permissible? In order to determine ethical preference, it is important to compare the action being evaluated with its alternatives. The relative value of an action must be viewed in context with the array of other possibilities. Ethical permissibility indicates that the action, in isolation, is itself ethically allowed. Planting a tree to help with carbon sequestration is ethically permissible, and can often be ethically preferable (to chopping down a tree, for example), but not ethically preferable to taking public transportation to avoid carbon emissions in the first place.

The act of having an abortion itself is ethically permissible because a woman has the right to determine what happens to her body insofar as she does not harm another living human being. A fetus, until viability, does not have the moral status of a human being. The fetus deserves our respect, but ultimately its life should not be valued above either the physical or emotional welfare of the mother. Thus, for any reason: whether she and her partner’s condom broke or she was raped, a woman should have access to an abortion, and not be compelled to undertake the burden of bringing a life into the world.

Thus, in the case of abortion, the alternatives are often not preferable. If a woman feels she is incapable of having a child or cannot offer that child the best life possible, it is ethically preferable to terminate the pregnancy. However, in light of access to contraception, education, and increased awareness of women’s rights that can avoid an unwanted pregnancy, abortion is not ethically preferable.

As such, we return to the conclusion that lowered abortion rates are good insofar as they indicate increased access to contraception and awareness of women’s rights. Abortions are themselves ethically permissible; therefore, there should not be a huge cause for moral concern if there is an increase of them. However, in light of ethically preferable alternatives, we should celebrate decreased abortion rates, which often herald opting for those alternatives.

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. 

An Obligation to Opportunity

By: Samantha Page

This post is written in response to Bonnie Poitras Tucker’s piece “Deaf Culture, Cochlear Implants, and Elective Disability,” with reference to Norman Daniels’s Just Health: Meeting Health Needs Fairly. In her article, Tucker first establishes the difference between “deaf” and “Deaf” to shed light on the divisive question of giving cochlear implants to children. While people in both the deaf and Deaf categories identify as having impaired hearing, members of the latter group separate themselves from hearing society through a distinct cultural identity while deaf people do not. In affiliation with their culture, Deaf people protest the use of cochlear implants as an attack on their community.

An essential point in Daniels’s work is the idea that health is equal to “normal functioning” (Daniels 2008, 35). To Daniels, this means that a person has a “full range…of opportunities,” in which she can pursue what is expected to be a normal lifestyle. When a person encounters an obstacle to her health that interferes with this expected way of life, Daniels calls it a “pathology” (Daniels 2008, 35, 37). In this post I apply Daniels’s ideas to Tucker’s discussion on cochlear implants to argue that it is unethical and impermissible for parents to withhold cochlear implants from children who have impaired hearing. 

Cochlear implants manifest the miraculous abilities of medicine by “restoring hearing and speech understanding to…[the] severely or profoundly deaf” (Tucker 1998, 6). One complication is that, to yield the best results, the devices must be put into effect in patients as young as possible. Most often the potential recipient is a child who lacks the full ability to understand and express her wishes on the matter. This forces parents to ultimately make life-altering decisions on their child’s behalf, raising the question of whether parents have an obligation to promote their child’s “normal functioning.” Though supporters of Deaf culture argue that cochlear implants destroy their community and should not be imposed onto deaf children, the costs of forgoing a resource that could ward off such “pathology” greatly outweigh the benefits associated with Deaf culture (Daniels 2008, 37).

When parents who have financial means to give their deaf child cochlear implants choose not to, they deliberately do not treat their child’s “impairments” and are willfully allowing her deafness to reduce her “range of…opportunities” (Daniels 2008, 35). This acceptance of the impairment is a form of neglect on the parents’ parts because they are not fulfilling their roles as guardians to best promote their child's health (Daniels 2008, 35). It is considered negligence for parents not to care for their child if she has the flu or a broken bone, and the costs and limitations of being deaf, if untreated, are far greater than these ailments.

As a defense against the implementation of cochlear implants, supporters of Deaf culture argue for its maintenance as a distinctive identity, leveraging the importance of their way of life against the benefits of being part of hearing society. Created from a need for a strong community where deaf people would not feel isolated or disadvantaged, Deaf culture is highly dependent on the shared language—American Sign Language (ASL). With this as its keystone, though, Deaf culture cannot be limited strictly to the deaf, because hearing people have access to ASL as well. The implementation of cochlear implants in deaf children is not necessarily permanent, either, because patients have the power to turn them off if they later wish to do so. However, not allowing a deaf child access to the device is an irreversible decision. Earlier implementation yields results, such as improved hearing and speech abilities, that are far greater than those gained by implementation in older patients. In attempts to avoid the destruction of Deaf culture, parents who do not give their deaf child cochlear implants deprive her of the autonomy to choose the hearing world, and potentially the Deaf one as well.

Parents should strive to give their child the most opportunities possible; because, as guardians of her basic needs their responsibilities include promoting health. The importance of timing when treating deafness with cochlear implants, and the accessibility of benefits associated with the Deaf community to people outside of that cultural identity, attributes a net loss of opportunities to a deaf child who does not receive the implants. Therefore, parents should not be allowed to forgo the procedure on behalf of their children when the device is within the family’s means. When parents do not provide their deaf child with cochlear implants, they limit their child’s future opportunities to choose to participate in hearing and Deaf culture. Additionally, they limit her physical autonomy through a potential life independent of the many aids deaf people need daily to succeed. However, when parents choose to give their deaf child cochlear implants they allow her greater future opportunities by giving her access to the hearing world, as well as providing her the option to participate in Deaf culture, if she wishes. 

Samantha Page is a first-year student at Smith College, where she was first introduced to the field of Bioethics. She is interested in studying American history and art history.

Works Cited:

• Daniels, Norman. Just Health: Meeting Health Needs Fairly, Cambridge 2008.

• Tucker, Bonnie Poitras. “Deaf Culture, Cochlear Implants, and Elective Disability,” Hastings Center Report 28, no. 4 (1998): 6-14. 

Dead Women Are Not Incubators

By Naomi Scheinerman 

On November 26, 2013, Marlise Munoz suffered a pulmonary embolism – a blood clot in the lung – in her Fort Worth, Texas home. Her husband, Erick Munoz, a paramedic, found her on the kitchen floor where she had collapsed and lay unconscious for over an hour. He administered CPR and called an ambulance, which rushed her to John Peter Smith Hospital. The doctors put her on a ventilator and restored her heartbeat, but soon determined that she had suffered “irreversible cessation of all spontaneous brain function,” or brain death. Her husband requested that she be taken off the ventilator, but the doctors refused. Marlise was 14-weeks pregnant and the Texas Advance Directs Act stipulates, “A person may not withdraw or withhold life-sustaining treatment under this chapter from a pregnant patient.” Erick, Marlise’s parents, and several medical and legal experts agreed that the state law should not apply because the ventilator was not “life-sustaining” because brain death is a legally binding definition of death accepted by all 50 states. Finally, after weeks of appeal, on Friday, January 24, Tarrant County District Judge R.H. Wallace ordered the hospital to disconnect Munoz from her ventilator.

Now, why discuss brain death in a reproductive health column?

Here are some of the many questions one should ask about this case: what is the point of an advanced directive if state laws can override them? Can there be any exceptions to our understanding of brain death? Should it matter how long the woman has been pregnant? Does the mandate apply to all pregnant women, regardless of their neurologic condition? I would like to focus on the last question. The short answer is this case is not about defining death as brain death, it’s defining a fetus as a living human being. At the time that Marlise Munoz became brain dead, she was 14-weeks pregnant. Texas’s laws regarding abortions are (coincidentally?) some of the more restrictive in the United States.

In addition, there is a sad irony in this case: the law preserves fetal life to keep a dead woman hooked up to a ventilator at the expense of medical equipment. However, this only fosters a potential individual whose existence will be replete with suffering and sadness. Because Munoz’s fetus was without its mother’s properly circulating blood and therefore oxygen, doctors and lawyers speculated that there would be severe health ramifications. On January 22, Munoz’s lawyers declared the fetus “distinctly abnormal.” For example, gender can normally be determined between 18 and 20 weeks and at 22 weeks, Munoz’s fetus’s “lower extremities [were] deformed to the extent that the gender cannot be determined.” Texan law, as such, was serving to not only keep a dead woman on a ventilator, but to create a human being whose chance at a healthy happy life was completely lost as a result of the law that tried to insure its existence.

One may fairly ask: What if the woman entered persistent vegetative state and the fetus was 30 weeks? According to NPR, the “authors of the Texas Advance Directives Act intended to keep a pregnant woman who was in a persistent vegetative state on a ventilator until she could deliver.” Turns out the authors of the law never intended for the hospital to interpret keeping a dead woman “alive” in order to serve as an incubator for the fetus.

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.