SpongeBob Squarepants and other cartoon characters

Bioethics Forum Essay

SpongeBob, Slime, and Brain Injuries: A Dangerous Combination for Kids

For the first time, this year’s Super Bowl will have an alternate telecast. The target audience is children: the NFL has teamed up with CBS and Nickelodeon on a broadcast presented by beloved cartoon characters, notably the cast of SpongeBob SquarePants and Dora the Explorer. The Teenage Mutant Ninja Turtles, Plankton, and undersea augmented reality jellyfish will also make appearances. To the NFL, bringing this kid-friendly approach to tackle football to a large audience of children is a cause for celebration. “Our previous telecasts on Nickelodeon have been huge hits and created a new and different way to experience an NFL game,” said NFL media executive vice president Hans Schroeder in a statement. “We’re excited to bring that creativity to Super Bowl 58 and give our fans another way to enjoy one of the world’s most popular sporting events.”

But as public health researchers, we are alarmed by efforts to promote the full-body collisions of tackle football to young children with animated mascots, enhanced augmented reality, bright colors, 3D iconography, and other child-friendly symbols. These broadcasts minimize the health hazards of tackling, particularly the dangers of brain injuries. Moreover, young children do not have the cognitive ability to understand or evaluate the risks.

With increasing research on the long-term effects of brain injuries, youth sports organizations have implemented concussion protocols and return-to-play guidelines to protect children from repeated head impacts. Public health agencies have developed training courses to help coaches, trainers, and others involved in youth sports learn how to recognize and respond to concussions. But at a time when we know how important it is to teach everybody involved in youth sports to take brain injuries seriously, these Nickelodeon broadcasts do just the opposite.

Perhaps most egregiously, in 2021, one NFL Playoffs on Nickelodeon announcer told child viewers that the forceful head collision they had just seen on TV was just like scraping their knees during recess. “You get banged up; you get back up, and you go out there and play another down.” Directly instructing children to keep on playing after hitting their heads and getting “banged up” is precisely the opposite of what they should do: stop playing and tell a grown-up so they can get checked out. As Chris Nowinski of the Concussion Legacy Foundation said, “The NFL Nickelodeon broadcast sent an incredibly dangerous message to children on what to do after hitting their head; this advice has literally gotten children killed.”

Even when announcers aren’t telling children that they can ignore brain injuries, the animations involved in these Nickelodeon broadcasts implicitly send the same dangerous message. The funny sound effects, vibrant colors, and entertaining animations that appear when players collide or hit the ground all combine to convey the impression that these hits are amusing and harmless. Superimposing these appealing graphics on real-life collisions is inherently deceptive to young children.

When it comes to other health risks, we’ve recognized the importance of protecting children from misleading messages about public health hazards. Perhaps most famously, in 1997, the Federal Trade Commission charged tobacco company R. J. Reynolds with violating federal law by using a cartoon character, Joe Camel, to appeal to children under age 18. This led tobacco companies to cease using Joe Camel and other similar cartoon mascots in their cigarette advertising campaigns. Disney has placed restrictions on advertisements for junk food aimed at children. And although numerous loopholes still need to be addressed, the food and beverage industry’s Children’s Food and Advertising Initiative (CFBAI) is similarly intended to place limits on the marketing of unhealthy foods to young viewers. In fact, young children under age 8 are so vulnerable to marketing that an American Psychological Association task force advised restricting all television advertising during programming targeted toward this age group.

Yet no such restrictions are in place on how the NFL and Nickelodeon portray the repeated, full-body collisions of tackle football. Given our knowledge of the health hazards of brain trauma, particularly for developing brains, regulations must be set up to prevent the celebration or “cartoonizing” of the most dangerous impacts. Programming for young children should not include slime and dancing animations when players hit the ground or each other, or any other scenarios that place athletes at high risk of brain injury from impact.

The NFL should consult with health professionals to create guidelines that prevent the misrepresentation of brain injury risks in all broadcasts aimed at children, including both visual depictions and how announcers call the plays. No football broadcasts, let alone programs targeting young children, should describe hits to the head as a minor injury that players can simply “bounce back” from.

And if CBS, Nickelodeon, and the NFL want to promote kid-centered football, they should take the lead in celebrating the excitement and fun of flag football. The NFL has begun to host flag football championships at Pro Bowl games and has developed several initiatives to encourage flag football among youth. The NFL could build on these efforts and collaborate on applying state-of-the-art graphics to flag football in its telecasts aimed at kids. When developing programming for young children, media broadcasters should emphasize noncollision sports and stop glorifying high-risk collisions that place athletes at risk for brain trauma. That would be a win for public health.

Kathleen Bachynski, PhD, MPH, is an assistant professor of public health at Muhlenberg College and author of No Game for Boys to Play: The History of Youth Football and the Origins of a Public Health Crisis. She is a volunteer member of the professional advisory board of Pink Concussions, a nonprofit organization that advocates for more research on concussions among girls and women. LinkedIn: Kathleen Bachynski ba

Asher Clissold is a Master’s of Public Health student at Boston University School of Public Health who has researched and presented on the NFL’s marketing of football to youth. LinkedIn: Asher Clissold  

prison bars in the dark

Bioethics Forum Essay

Considering the Duality of Nitrogen

Nitrogen gas makes up 78% of the air on planet Earth. Nitrogen is key in nucleotides, the individual units of our genetic material. Nitrogen is also contained in all proteins, which are what we see when we look at the form of another (unclothed) human. Nitrogen in soil is essential for the crops that feed humans and animals. Liquid nitrogen enables biological samples to be stored. Measurement of blood urea nitrogen is a fundamental indicator of renal function. And, on January 25, nitrogen gas was used for the first time to execute a prisoner on death row.   

The execution of Kenneth Smith does not answer the many questions raised by this new means of capital punishment. Is it “perhaps the most humane method” of execution,” as the Alabama attorney general has claimed? Or is it cruel and unusual punishment, as Smith’s attorneys and others have argued? Answering these questions is of vital importance, since nitrogen gas has been approved by three states for capital punishment.

While nitrogen is at least as old as our planet, the industrial and agricultural revolutions increased our reliance on it. German chemist Fritz Haber received the 1918 Nobel Prize in chemistry for his development of the Haber-Bosch process, a reaction which, for the first-time, produced ammonia at scale from atmospheric nitrogen and hydrogen. Among other uses, the ammonia from this process enabled mass production of the fertilizers essential for the agricultural growth required to feed the fourfold increase in human population over the past century.

 Despite Haber’s tremendous contribution to the science of chemistry, his legacy is deeply tarnished, as  he was also an architect of the use of chlorine, mustard and phosgene gases in World War I in violation of the Hague Conventions of 1899 and 1907. His research enabled production of Zyklon-B, the gas used to execute millions in the Nazi death camps of World War II. These connections make the use of nitrogen gas in capital punishment in 2024 all the more macabre.

The American Medical Association’s code of ethics on capital punishment states, “A physician, as a member of a profession dedicated to preserving life when there is hope of doing so, should not be a participant in a legally authorized execution.”

In a 2018 amicus brief to the U.S. Supreme Court, the AMA was more emphatic in its condemnation of capital punishment and physicians’ participation in it: “What people much prefer is a way to accomplish the deed while believing there is something humane about it. Society wants to delude itself into a belief that capital punishment no longer represents a weighted moral choice but is now somehow scientific—nearly antiseptic. This delusion, however, cheapens life and makes its extinction easier. The medical profession, whose ‘essential quality’ is an interest in humanity, and which reveres human life, should have no part in this charade.”

While laudable, one wonders if the AMA’s broad view that the medical profession should “have no part in this charade” may have an unintended effect–preventing physicians from speaking out against questionable capital punishment methods? Does fully respecting the AMA’s guidance require professionals to keep their knowledge of physiology, ethics, and history to themselves? An unfortunate consequence of physicians’ silence is that attorneys and legislators have taken the microphone and promulgated methods of execution, including nitrogen gas, that many consider to be inhumane.

If the process for medical and ethical vetting of any new execution methods before they become legal is unclear or nonexistent, and legislators and bureaucrats are the final decision-makers on such matters, then civil society should be concerned.

Witnesses to the execution, including journalists and Smith’s spiritual adviser, have said that nothing about it supported the Alabama Attorney General’s blithe predictions about the humanity of the method. Organizations around the world criticized the execution, including the United Nations High Commissioner for Human Rights, the European Union, and Amnesty International. The White House found reports of the execution “deeply troubling.”

We as a society have a choice about whether to restore the use of nitrogen exclusively for good or not—to overlook the long-ago disgraced uses of nitrogen gas for chemical warfare and genocide and accept it as a means for execution today. We must carefully consider the risks of moral backsliding to a time when gas poisoning was conducted by state actors. The consequences are easy to see. But unless nitrogen gas for executions is challenged on constitutional grounds as cruel and unusual punishment, it can be used again in Alabama, Oklahoma, and Mississippi. Indeed, since Alabama’s attorney general has said he intends to continue using it and would help other states interested in doing so, now is the time for the AMA, the American College of Correctional Physicians, bioethicists, and others to challenge this method.

No one knew precisely what would happen when Smith was restrained on a gurney and nitrogen gas was released into the tubing-and-mask circuit sealed to his face. Today, that knowledge comes at an enormous moral cost. As a society, we must ask ourselves what else was released into the circuit of civil society? And are we willing to restore what was lost on January 25, 2024?

The number of moral questions to be asked would be far fewer if the black-topped nitrogen tank had simply remained sealed.

Rafael Escandon, DrPH, PhD, MPH, HEC-C, is a consultant in research ethics and clinical R&D to the biotechnology industry in Bainbridge Island, Wash.

Betty Rollin

Bioethics Forum Essay

Betty Rollin’s Assisted Death: Unanswered Questions

Network news correspondent and author Betty Rollin died in November at age 87. Surprisingly, there has been little public comment upon how her life ended. Rollin died in Switzerland at Pegasos, a voluntary assisted dying service. The circumstances of her death underscore the confusion over terminology and the uneasiness some feel regarding efforts to legalize assisted dying in New York State and elsewhere in our country.

Rollin may have suspected that her death would draw attention to a cause she had long supported. Her book Last Wish details her role in helping her mother with advanced ovarian cancer die, and she has written that her husband suffered needlessly before he died in 2020.

In contrast to her mother’s and husband’s experiences, though, Rollin had no terminal diagnosis, as Swiss law does not require it. According to her obituary, she suffered from arthritis, unspecified abdominal pain, and persistent sadness over the loss of her husband.

While supporters of medical aid in dying have framed the issue largely as an act of compassion for the incurably ill, Rollin’s decision suggests that the underlying motivation is also an argument for radical self-determination, a right to die on one’s own terms. This subjective dimension, and the need for assistance in carrying that decision out, raise questions about when and how to honor such requests.

Crucially, what is the relationship between medically assisted death, as in the United States and Canada, and voluntary assisted death, as in Switzerland? Rollin’s experience suggests that the differences are more apparent than real.

In Switzerland, physician approval for an assisted death is not needed as long as the motivation of the person providing assistance is altruistic. Still, Pegasos makes a point of noting that medical professionals are part of their team and that “skilled medical professionals” are involved in placing the IV through which the lethal drug is given. Their presence makes them an essential part of the process, if only for quality assurance purposes.

For Pegasos, according to the organization’s website, the person requesting assisted death must be over 18, of sound mind, and have a poor quality of life. The fee is roughly $11,000.  This cost, combined with the expense and logistics of travel to Pegasos, may prove obstacles to many. 

Most proposals to legalize aid in dying in this country, in contrast, require that a physician certifies the appropriateness of a person’s request. But this requirement leads to questions about how physicians are to judge “appropriateness” and frustration on the part of some who are anxious to move forward. If the purpose is existential, why involve physicians? The stated aims of Pegasos include minimizing red tape and speeding up the process.

The cultural diversity and extreme disparities in wealth in the U.S., not to mention our severe deficiencies in mental health care, make it unlikely that facilities like Pegasos could win legal approval here. For that reason, perhaps, advocacy groups have focused on having physicians serve as gatekeepers.

Rollin’s experience, though, suggests that we may find it difficult to distinguish between assisted death for existential reasons, as in Switzerland, and medically assisted death as currently authorized or proposed in some U.S. states—for which a physician certifies eligibility, and the stated purpose is to relieve physical suffering from progressive incurable illness. 

As evidence of this conceptual difficulty, Canada, where a terminal diagnosis has been a requirement for eligibility for medical assistance in dying, is moving toward allowing the practice for existential reasons. In March, Canadians whose only condition is a mental illness will be eligible. Their eligibility must be assessed and confirmed by doctors or nurse practitioners.

The subjectivity in determining whose suffering qualifies for medically assisted death raises this question: how can a clinician be certain? One can say that it is the person’s choice, not the health care professionals’. But, in fact, it is the health care professionals endorsing the request, writing the prescription, and, in Canada, administering the life-ending medications. 

Harnessing the power and prestige of the medical profession to this practice injects a deceptive aura of scientific objectivity into a murky human dilemma. Physicians ought to stand by their patients and attend to their comfort. And they are responsible for honestly and sensitively discussing the possibilities and limits to therapeutic medicine.

But nothing in their training prepares physicians to judge whether a person’s life is no longer worth living.

Caring for those who are not getting better is highly stressful for most physicians. I am very aware of the unacknowledged ambiguous, even hostile, feelings doctors may have toward those with unrelieved suffering. Who among us has not had a bad experience with a doctor or worried that a doctor was unduly motivated by self-interest? 

Returning to Rollin, we cannot know the full extent of her reasons for ending her life. Clearly, her feelings were powerful, and her action appears to have been carefully planned. But someone’s feelings may suddenly change or be manipulated under conditions of profound existential doubt.

One prominent physician bioethicist expressed sadness that Rollin gave up on living but admiration that she had done “what she thought was right.” His ambivalence is understandable: Rollin thought her decision was right, but does he agree? This hesitancy might lead us to reflect before we make deliberately causing a person’s death, as she wished, an accepted medical service.

Alan B. Astrow, MD, is chief of medical oncology and hematology at New York-Presbyterian Brooklyn Methodist Hospital and professor of clinical medicine at Weill Cornell Medicine.

car driver's hands honking horn and forming fist

Bioethics Forum Essay

Unresolved Grief is Eating Away at Us

The start of a new year is a time for reflection. In most ways, 2023 was a return to normal. Schools were fully back in person; hybrid work was old hat; travel rebounded; and people ate in restaurants and went out to the movies and plays.  One could be forgiven for thinking that the greatest pandemic of our lifetime had not even happened. Yet, I see people easily agitated and stressed, and nerves frayed. These behaviors show up in social interactions, on the road, and on social media. I think in our desire to regain a sense of normalcy we have not grieved properly for the losses and hardships of the past four years.

Grief is “the anguish experienced after significant loss, usually the death of a beloved person,” according to the American Psychological Association. It can present in response to any event that disrupts or challenges our sense of normalcy or ourselves.  Natural disasters, wars, and pandemics involve collective grief, loss experienced by a group, and traumatic grief is a response to loss that takes place under horrific and unpredictable circumstances. Grief is typically followed by a period of mourning. Avoiding this stage can lead to complicated grief, a disorder characterized by long-lasting, painful emotions and difficulty recovering from the loss.  I think our collective, traumatic, and unresolved grief is seeping out in unhelpful and unhealthy ways. If we do not tend to it, it could affect us for years to come.

Elizabeth Kubler-Ross is famous for identifying five stages of grief: denial, anger, bargaining, depression, and acceptance. These stages don’t necessarily happen in this order, and I think as a society we are stuck in the anger stage. We experienced denial in the beginning of the pandemic and definitely depression during lockdown and beyond as mental health issues remain at higher levels than pre-pandemic. There may well have been lots of bargaining going on too, e.g. “If I don’t go to this social gathering, I can go to the next one safely.”  We have lost so much. We lost the world as we knew it. We lost a sense of predictability in life and some degree of optimism about the future. We lost loved ones and colleagues; children lost educational, social, and emotional development. Many Americans lost trust in our leaders and experts.

Early in the pandemic, there was attention to those lost. The news media tracked the Covid deaths daily. Now, these deaths rarely make the news.

What we have lost needs to be acknowledged to process our grief and move toward acceptance, a process that will be uncomfortable, if not painful, for a while. There are many ways this can happen. Nationally, we could identify a day of remembrance for the over 1 million lives lost to the pandemic in the United States alone. States and local communities could join in and add their own services. The only such service we’ve had was attended by President Joe Biden on the eve of his inauguration in January 2021

Churches, synagogues, and mosques could hold special services for their members annually helping to personalize the mourning within that community. It would also be worthwhile for individual institutions and employers to acknowledge their losses, recognizing the individuals who were known to them and who are missed. The health care profession, of course, was hit particularly hard.

Beyond acknowledging our losses, schools and parents need to help children understand their emotions and process them. Local communities, perhaps through the libraries or other civic and nonprofit organizations, could offer times and places for their members to share their experiences over the past few years. Ignoring what we have lost isn’t working. Waiting for the anger and frustration to dissipate isn’t wise. Only when we face our losses and the toll they have taken and grieve can we truly move on.

Katherine Wasson, PhD, MPH, HEC-C, is a professor in the Neiswanger Institute for Bioethics at Loyola University Chicago. 

Clinical Case Studies card

Bioethics Forum Essay

Balancing a Patient’s Autonomy Against Misinformation

Case Narrative

Ms. J, a 45-year-old mother of three, was admitted to the emergency department with significant shortness of breath. With her children by her side, she relayed that she had tested positive for Covid 10 days prior and had not been vaccinated. Having done her own research, she had been self-medicating at home with vitamins. At the hospital she was found to have Covid pneumonia and very low blood oxygen, and was started on a high-flow nasal cannula delivering oxygen at the maximum rate of 60 liters per minute. Her blood oxygen remained low, however, and she was transferred to the intensive care unit to be put on a ventilator. The team reported that, with ventilator support, Ms. J would have a 50% chance of making a full recovery, and that without it she would almost certainly die. That notwithstanding, Ms. J declined to consent to the ventilator.

She explained that, from the various articles she had read, ventilators did not work for Covid, and said she had heard that hospitals were only putting Covid patients on ventilators in order to receive significant remuneration from the federal government. She wanted to leave the hospital immediately to get vitamins that she thought would relieve her shortness of breath. Both the attending physician and the nursing staff were distressed. They reported that, if Ms. J were to remove the nasal cannula and leave the hospital, she would very likely die before making it to the parking lot. But Ms. J was unwavering – she did not believe she was at risk of death by leaving the hospital and she was minutes away from walking out. The team called an ethics consult to help them think through the dilemma between respecting Ms. J’s preference and protecting her from grave harm in the context of false beliefs.

Ethical Analysis and Process

Under normal circumstances, the ethics team would have met with the treating team, the patient, and perhaps the patient’s family with the aim of facilitating consensus among the parties. But there wasn’t time to arrange meetings. Ms. J’s situation was emergent, and the treating team felt that the need for ventilator support was imminent. So, the ethics team spoke to the treating team by phone.

The focus of the phone call was on Ms. J’s capacity to decline treatment. It was acknowledged that patients have the right to refuse any and all treatments, even life-sustaining treatments. However, before honoring a patient’s decision to decline important medical treatment, health care providers have an obligation to assess the patient’s decision-making capacity. While denying someone with decisional capacity the right to guide their own health care is clearly unethical, failing to protect someone without decisional capacity from a harmful choice is a moral failing, as well. The ethics team outlined that patients with decision-making capacity are able to: (1) communicate a clear choice, (2) demonstrate understanding of their medical condition, (3) appreciate their clinical situation and the benefits and burdens of treatment (as well as of forgoing treatment), and (4) reason through the decision, applying the relevant medical information to their values and interests. Importantly, the ethics team also explained that when the decision is particularly consequential (e.g., there is a high risk of avoidable death without treatment), the threshold for a patient being judged as having demonstrated capacity is commensurately high.

The medical team explained that Ms. J was certainly able to communicate a clear choice. She also seemed to understand what the treating team was telling her, and she was able to demonstrate some reasoning as to why she wanted to leave the hospital and why she was refusing to be put on a ventilator. Rather than focusing on her understanding or her reasoning, the ethics team called attention to whether Ms. J was demonstrating sufficient appreciation of her clinical condition and the likely consequences of declining treatment. Ms. J was not merely in disbelief about the likelihood of death should she forgo ventilation; she was in disbelief about the possibility of such an adverse outcome. In short, her false beliefs about her disease meant she was unable to demonstrate sufficient appreciation of the likely consequences of forgoing treatment. The clinical ethicists reminded the treating team that each of the four abilities is necessary for capable decision-making. If there was significant doubt about Ms. J’s capacity, the ethicists said, the treating team should err on the side of caution: judge her to lack capacity and encourage her to identify a surrogate decision-maker (e.g., one of her adult children) to help with treatment decisions. 

The Decision

The treating team informed Ms. J of their concerns about her decision-making capacity given the dire consequences of forgoing ventilation, and they asked if they could turn to one of her children to help with the decision. Fortunately, Ms. J identified one of her adult daughters as her surrogate. Her daughter provided consent and was even able to persuade Ms. J that her life depended upon remaining in the hospital and receiving ventilator support. Even more fortunately, the treatment was successful. Ms. J left the ICU a week later and was discharged from the hospital soon after.

Lingering Questions

Despite the auspicious outcome of this case, it raises three challenges. First, shouldn’t the medical team have respected Ms. J’s autonomy and let her make her own decision, even if, in the team’s professional judgement, her decision was a bad one? Again, if Ms. J had demonstrated sufficient decision-making capacity—based on the four abilities outlined above—then, yes. Patients demonstrating capacity get to make their own treatment decisions, even decisions that go against medical judgement and are life-threatening. But when patients fail to appreciate the likely outcomes of their decisions and instead have false beliefs about the consequences of forgoing treatment, they lack decision-making capacity. Respecting the preference of a patient without sufficient capacity does not necessarily respect their autonomy, but instead could potentially constitute a failure to act in their best interest.

Second, it was fortunate that Ms. J’s daughter was able to persuade her mother to accept treatment. But what if she hadn’t been able to do so? When a patient who declines treatment lacks capacity, it doesn’t necessarily follow that treatment should be provided over the patient’s objection. The potential benefits of a treatment must always be weighed against the burdens of the treatment. And, when treatment is provided over a patient’s objection, the benefit should be especially strong, given the significant psychological and emotional harms often associated with involuntary treatment. If Ms. J had not been persuaded, the treating team and her daughter would have had to decide whether treatment, all things considered, was in Ms. J’s overall best interest.

Lastly, what should the team have done if Ms. J’s daughter had the same mistaken beliefs and incredulity about her mother’s dire prognosis? What if her entire family shared those beliefs? What about when those beliefs are widespread? Given the  extent of misinformation about Covid treatment, it’s not unreasonable to assume that a significant minority of the U.S. population held beliefs similar to Ms. J’s and that these beliefs may have had a political etiology. Does this mean that a significant minority of the population would lack decision-making capacity if they found themselves in Ms. J’s situation?

There is no well-worked out theory of incredulity and its relationship to capacity. And there are certainly differences between false beliefs, conspiracy theories, and delusions. That notwithstanding, it is important to note that not all false beliefs undermine capable decision-making. Believing that the Earth is flat, for example, does not undermine a patient’s capacity to decide between life-saving treatment and leaving the hospital against medical advice. But when a patient has false beliefs that are pertinent to the decision at hand–for instance, a belief that their illness is not severe and can be remedied with vitamins–these false beliefs can undermine their capacity to make decisions in line with their own conception of the good, about what makes a life worthwhile. Just as incredulity about a diagnosis can prevent patients from making capable decisions about treatment, incredulity about the likely consequences of a decision can lead to a judgement of incapacity.

Daniel Edward Callies, PhD is a clinical ethicist and the ethics program manager for the University of California, San Diego Health System.

Series Editors’ Comment: Considering Humility and Trustworthiness

Honoring patient autonomy cannot be done in a vacuum. Autonomy is relational insofar as it depends on the sharing of information and the ability to work through complicated decisions with others. But the choices we make are molded by social norms, beliefs, and values. This is why the process of eliciting a patient’s values and expertise, sharing relevant clinical knowledge, and, ultimately, supporting the patient in choosing the best pathway forward for them cannot be abstracted from ordinary, deep-seated norms, beliefs, and, importantly, imbalances of power. While health care professionals are trained experts in clinical care, their power to adjudicate truth and falsity of individual beliefs is necessarily limited.

Ms. J’s case demonstrates the importance of balancing respect for autonomy and harm prevention, but also the important virtues of humility and trustworthiness. As many patients know, health care is an imperfect science and health care providers sometimes get it wrong. This complicates their efforts to assess a patient’s capacity based on appreciation of consequences and reasoning about options, especially when assessment of decision-making capacity can be weaponized to justify acting over a patient’s stated objections.

While Callies rightly relies on the gravity of the harm (likely death) and the patient’s lack of appreciation that she might die, health care professionals should question what appreciation means in the context of opposing sociopolitical values and related beliefs. There are broader harms—experienced and witnessed during the Covid pandemic—that result from behaviors that create and perpetuate distrust. Acting over a patient’s objections—even if justified by nonmaleficence for a patient without decision-making capacity—has consequences that can reverberate in families and communities. How should these moral harms be weighed? This is a powerful question that cannot be answered by health care professionals alone.

Ethics consultants can help health care professionals appreciate the importance of this question and work with all engaged parties to determine who has the authority to answer it definitively in a given case. Yet, the question will always recur, as will other moral questions essential to the practice of medicine, each time providing another opportunity to situate the meaning of health care within the context of its practice.

Trust and distrust arise in case-by-case enactments of power and authority in everyday health care practice. The authority that trained health care professionals have over shaping clinical conversations carries a risk of harm: in attempting to focus on medical facts, health care professionals may circumvent open speech and, in the process, sow distrust and convey bias.

This is the heart of the moral dilemma posed by the case of Ms. J. It is right to question whether honoring choices tied to reasons that are personal, even political–and are disputed by many health care experts–could serve to build patient or community trust and support broader community benefit, even if honoring those choices means risking a patient’s life. At the same time, the death of such a patient risks increasing distrust in the capacity of health care professionals to save the lives of patients who are vulnerable to the harms of the politicization of medical facts.

Ultimately, ethics consultants can support serious consideration of patients’ voices and rights, while simultaneously building trust and minimizing harm, by helping health care professionals align medical care with the values conveyed by their patients. After assessing a patient’s capacity to make decisions, with close attention to possible biases at play and holistic consideration of the severity of the risks to the patient, ethics consultants may sometimes conclude that life-saving therapy cannot be provided over a patient’s objection. These decisions should always be recognized as uncertain and made with humility.

Georgina Campelia and Thomas Cunningham

Learn more about the seriesClinical Ethics Case Studies for Hastings Bioethics Forum.

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clasped hands of patient, doctor's hands with pen and clipboard

Bioethics Forum Essay

Cold Comfort for Texas Obstetricians

In an essay about the recent Texas Supreme Court decision on abortion, John Lantos was correct in stating that the justices refused to issue an order protecting Dr. Damla Karsan and her patient, Kate Cox, whose fetus had trisomy 18, “from prosecution under [Texas’] abortion-banning law,” noting especially that Texas does not permit abortion for lethal fetal anomalies. In their opinion, although the justices wrote that “the pleadings state that Ms. Cox’s doctor—Dr. Damla Karsan—believes Ms. Cox qualifies for an abortion based on the medical-necessity exception,” they held that the doctor’s good faith belief that the statutory requirements had been met did not suffice because Dr. Karsan did not explicitly say that, in her “reasonable medical judgment,” her patient had “a life-threatening physical condition aggravated by, caused by, or arising from a pregnancy that places the female at risk of death or poses a serious risk of substantial impairment of a major bodily function unless the abortion is performed or induced.”  [TEX. HEALTH & SAFETY CODE § 170A.002(b)(2)]

As a result, the justices refused to “pre-authorize the abortion.”

Yet, Lantos was misguided in suggesting that the remainder of the opinion offers a path forward if only physicians would exercise “reasonable medical judgment” that their patients faced the statutory level of harm. It may seem reassuring that these justices sought to provide “some clarity,” writing that “[t]he law leaves to physicians—not judges—both the discretion and the responsibility to exercise their reasonable medical judgment, given the unique facts and circumstances of each patient.” (emphasis original) In fact, the justices specifically declined to say any more about what constitutes “reasonable medical judgment.” They did say that women need not be on the brink of death before abortion is permissible. This formal deference to physicians may reflect in part courts’ general reluctance to give prior approval to physicians since the court here stated three times in its opinion that women need not obtain court orders prior to having a qualifying abortion.

The first problem with Lantos’s analysis is that having decided the main issue in the case – whether Kate Cox’s abortion could proceed — all the language that followed was mere dicta, nonbinding statements of limited precedential value. The justices were not promising that an exception would automatically be available when, in a physician’s “reasonable medical judgment,” the woman’s health was at serious risk. Certainly, simply saying the magic words would not suffice to confer immunity, especially since the opinion later said that “[a]n exercise of reasonable medical judgment does not mean that every doctor would reach the same conclusion.”  One wonders whether these justices would have discounted Dr. Karman’s words even had she used the statutory language in her attestation. 

The justices’ suggestion that the Texas Medical Board could choose to provide more guidance fails to recognize that the board has rarely provided definitive guidance about the standard of care in any aspect of medical practice. When the board does address what physicians should do in certain practice areas, it typically focuses on procedural issues, often specifying that it did not intend to preclude consideration of other sources of authority on how clinicians should care for patients. Nor should it be reassuring to clinicians seeking to care for their sick pregnant patients that all members of the board are appointed by the governor and are represented by the Texas attorney general.

And there is at least one more problem. The opinion in this case was decided by only three justices of the Texas Supreme Court (out of nine) and issued per curiam (without identifying who wrote it) after necessarily rapid briefing given the immediacy of the case. The decision of these justices to address “reasonable medical judgment” at some length is particularly puzzling since, two weeks earlier, on November 28, 2023, the entire Texas Supreme Court had heard oral arguments in the case of Zurawski v. Texas No. 23-0629.  In that case, the trial court, after hearing extensive testimony from women  who said they had been harmed by “the widespread uncertainty of physicians’ level of discretion under the scope of Texas medical exception provision,” enjoined “abortion bans in any manner that: (i) would prevent the Patient Plaintiffs and pregnant persons throughout Texas from receiving necessary abortion care in connection with an emergent medical condition; (ii) would subject the Physician Plaintiffs and others in Texas to liability for providing necessary abortion care in connection with an emergent medical condition; and (iii) would be inconsistent with the rights of pregnant persons and physicians in Texas under Article I, §§ 3, 3a, and/or 19 of the Texas Constitution . . . .” 

The injunction never went into effect because the Texas attorney general appealed it the same day.  It is almost as if the three justices, by their dicta in denying the Coxes’ and Dr. Karsan’s request for a protective order, were attempting to preempt the deliberations of the entire Texas Supreme Court in Zurawski.

Most troubling of all, physicians’ decisions are always subject to being second-guessed by prosecutors, trial courts, expert witnesses, and juries. Nothing prevents a prosecutor from bringing charges, and juries have enormous discretion in weighing evidence. If this is the path forward for physicians, it is characterized by rocks, IEDs, chasms, and steep drop-offs.

So, my advice is to be cautious, be very cautious, of the dire uncertainty that remains.

Ellen Wright Clayton, JD, MD, is the Craig-Weaver Chair in Pediatrics, core faculty of the Center for Biomedical Ethics and Society, and a professor of law at Vanderbilt University. She is a Hastings Center fellow.

Illustrative image for This Wasn t the Plan A Family Caregiver s Recommended Readings from 2023

Bioethics Forum Essay

This Wasn’t the Plan: A Family Caregiver’s Recommended Readings from 2023

Work and life overlapped significantly for me in 2023. The timeframe for the latest project in the  Bioethics for Aging Societies portfolio—a Greenwall Foundation-funded analysis of ways to support aging through housing—coincided with changes in my 89-year-old mother’s health that by year’s end resulted in a change in her housing. As my mother says, no one “plans” to move to assisted living as an aspiration. Something happens. A fall, a stroke, the accrual of age-associated conditions within one life, or within a couple’s life. And so, life changes, yet again. I am reading reports and articles about aging and caregiving with a sharper perspective, reality-checking, looking for my mother, and for myself, in the stats and stories. Here’s a round-up of good reads from 2023.

An excellent New York Times/KFF Health News series with the less-than-cheerful title Dying Broke catalogs how impossible it is for many Americans to “plan” for a financially secure old age. The “choices” available to people who need care heavily depend on ability to pay for “options” outside the Medicare health insurance system for older Americans. This series makes admirably clear that in America, when we say “care,” this usually means family caregivers. That society in which people care for their elders? That’s this society, for better or worse. As the thousands of reader comments on this series make clear, what is missing from American society is a coherent and equitable system for financing care, comparable to Medicare and meeting the foreseeable needs of an aging population.

A report on financial longevity, from the University of Pennsylvania’s New Courtland Center for Transitions and Health in collaboration with the TIAA Institute, avoids the trap of reducing population aging to a personal or family problem and advising caregivers to “take care of themselves.” (Disclosure: I have written with New Courtland director Mary Naylor, a co-author of this report.) The authors present the useful concept of “financial caregiving,” reflecting data showing that nearly all family caregivers provide financial support or manage finances on behalf of the person they are caring for. The report’s recommendations in response to this intergenerational reality are targeted to employers and financial advisors of current and future caregivers. Employers are encouraged to offer flexible work, remote work, and paid family leave as part of standard benefits, given that 60% of family caregivers are employed. Financial advisors are encouraged to shift from “retirement” planning to “longevity” planning, talking more directly with clients about how population aging (longer lives and smaller families/future caregivers) affects them. The report also notes that the financial costs borne by family caregivers as a percentage of income are significantly higher among Black and Hispanic/Latino family caregivers, with implications for their financial security.

The slide-format infographics summarizing this report are especially helpful, and the limited use of cutesy phrases such as “sandwich generation” is refreshing. Caregiving is serious work. The renegotiation of self-determination as a shared project, involving the delegation of activities such as paying one’s own bills or doing one’s own taxes, involves mutual learning, patience, respect, and trust. For more on financial caregiving in the context of dementia, see this 2023 study from University of Michigan investigators, which analyzes how the incremental changes associated with this disease translate into increased care needs and out-of-pocket care costs.

My research colleague Jennifer Molinsky, who directs the Housing an Aging Society program at the Harvard-based Joint Center for Housing Studies, produces a crucial semiannual report on housing America’s older adults. (The link includes the full report, charts, data sources, and other tools.) In a post summarizing insights from the 2023 report, Molinsky explains how population aging intersects with the shortage of affordable housing in the U.S., and how the housing needs of older adults include–and go beyond–affordability.

In the next decade, people over 80 will become the fastest growing segment of the U.S. population. Due to age-associated health conditions and limits on mobility, people over 80 are foreseeably more likely to need accessible housing, and also services and supports provided in or near where they live. The cost of certain services and supports, such as hiring a live-in aide, are beyond the financial means of typical, nonwealthy, older adults. While greater options technically exist for older adults who are income-eligible for housing subsidies or dually eligible for Medicaid, actual access to these options is constrained by waiting lists and insufficient availability. Residential options such as assisted living usually rely on owning a home that can be sold to generate the funds needed to pay monthly fees. The supply of truly affordable housing designed for older adults, with attention to accessibility and to proximity to local services and opportunities for social connection, is severely limited. Result: older adults and their families are making do with housing that no longer works, while compensating for services that they cannot afford or that do not exist where they live. Steep inequalities associated with race and ethnicity reflect the consequences of longstanding barriers to homeownership and to living in communities with higher property values.

Molinsky (an advisor to my project) calls for a shift in how our nation thinks about housing, aging, and care. Our current approach, in which real options exist only for the wealthy, excludes most older adults and families from making choices based on existing housing stock. (Waiting lists are not a realistic strategy for people in their 80s.) We are missing opportunities for creativity in using housing to improve lives.

Other recent publications I found useful included updated research on the future of the forgotten middle of older adults who lack wealth and do not qualify for Medicaid or housing subsidies; an essay on “longevity-ready cities” as a framework for urban planning, shifting beyond the scale and individual focus of “age friendly” services; and the smart reporting of Atlantic staff writer Jerusalem Demsas on housing.

I learned a lot about Medicare this year. There is nothing like a discharge planning meeting to drive home the crucial distinctions between what Medicare pays for and what is recommended post-discharge but not covered by insurance. The website of Medicare Rights Center, a nonprofit that provides education, counseling, and advocacy to Medicare-insured individuals (including many younger people with disabilities), is a great resource. The website of the Family Caregiver Alliance includes a comprehensive section on “caring for another,” with details on how to be decent employer if you are considering hiring home-based care workers.

Finally, the most sustaining book I read in 2023 was about caregiving, although I didn’t realize that when I bought it. Breadsong is a superb book about baking, and is also a memoir, jointly told by a young woman and her father, about severe depression, family caregiving, and recovery, anchored by a strong sense of place: a village near Oxford, England. A memorable story about interdependence and creativity—and the recipes work.

Nancy Berlinger is a senior research scholar at The Hastings Center and a Hastings Center fellow.

Texas supreme court building

Bioethics Forum Essay

Texas Supreme Court Offers Roadmap for Legal Abortion

A recent Texas Supreme Court decision with implications for post-Dobbs jurisprudence on abortion seems to have been a victory for those who oppose the practice. It was widely read as upholding Texas’s very strict anti-abortion legislation. I suggest another possible reading of that decision.

The case focused on Kate Cox, a 31-year-old mother of two. She sought an abortion after learning that her fetus had multiple congenital anomalies, and she developed medical complications that could have made future pregnancies impossible. This month, a Texas court granted her request for a temporary restraining order on enforcement of Texas’s abortion bans, thus permitting her to have an abortion. The Texas Supreme Court overturned the lower court’s decision, and Cox then left Texas to seek health care elsewhere. 

First, some facts. Kate and her husband, Justin Cox, always wanted lots of children. They have two now. In August, they learned that she was pregnant with a third. Sadly, prenatal testing showed that the fetus had multiple malformations, including problems with its heart, spine, brain, and limbs. A diagnosis of Trisomy 18 was confirmed. Kate’s doctor told her that continuing the pregnancy would jeopardize her health and make future pregnancies riskier and recommended that she terminate her pregnancy to preserve her own health and ability to have more children.

After much discussion with her husband and her family, Kate decided that terminating this pregnancy would be the right decision for her and her family. In her own words: “I do not want to put my body through the risks of continuing this pregnancy. I desperately want the chance to try for another baby and want to access the medical care now that gives me the best chance at another baby.”

Her case highlights some of the bizarreness of the current hyper-polarized world of abortion politics. Kate’s fetus would likely not survive. Kate passionately wants to have more children. Continuing the pregnancy would have decreased the chances of her having healthy pregnancies in the future. Terminating the pregnancy, by contrast, was the more pro-life strategy. Yet, in the name of an ideology that is supposedly pro-life, Texas Attorney General Ken Paxton sought to force Kate to continue a pregnancy that would not only have put her health at risk but would also have decreased the likelihood that she could have healthy children in the future. 

Still, this case, and another like it that is before the Texas Supreme Court, are forcing Texas judges to do their job and clarify the implications of the thoroughly ambiguous law that is now state policy.  That law says that abortion is permissible when, “in the exercise of reasonable medical judgment, the pregnant female on whom the abortion is performed has a life-threatening physical condition aggravated by, caused by, or arising from a pregnancy that places the female at risk of death or poses a serious risk of substantial impairment of a major bodily function unless the abortion is performed.”

It is unclear how serious a health threat must be for an abortion to be permissible under that exemption. The Coxes’ original petition for a restraining order noted some of the many ambiguities. “Nowhere in the code does Texas law define any of the following distinctions: ’risk’ versus ’serious risk’; ‘insubstantial impairment’ versus ‘substantial impairment’; or ‘minor bodily function’ versus ‘major bodily function.’ Nor does Texas law define what it means to have “a serious risk of a substantial impairment” or “a substantial impairment of a major bodily function.” 

A lower court found that, if Kate continued the pregnancy, it would create a “serious risk” to “her life, health, and fertility.”  The court cited medical testimony stating that, “If she is forced to continue this pregnancy, Ms. Cox is at a particularly high risk for gestational hypertension, gestational diabetes, fetal macrosomia, post-operative infections, anesthesia complications, uterine rupture and hysterectomy due to her two prior c-sections and underlying health conditions. Undergoing a third c-section would make subsequent pregnancies higher risk and make it less likely that Ms. Cox would be able to carry another child in the future.”  An amicus brief from the American College of Obstetrics and Gynecology and the Society of Maternal and Fetal Medicine supported these claims. Based on these findings, the lower court issued an order that protected the Coxes and their doctor from prosecution under the abortion-banning statute.

A few days later, the Texas Supreme Court reversed that ruling.

The Supreme Court decision did two things. First, as widely noted, it overturned the lower court decision that would have protected  the Coxes and their physician from prosecution under the abortion-banning law.  Second, and more interesting, it proposed a set of criteria that could be read as a roadmap, endorsed by the highest court in the state, for the type of argument that would be necessary for a doctor to legally provide an abortion.

A few things have become clear from the decision. First, in Texas, a fetal condition by itself, no matter how severe, is not enough to justify an abortion. Texas Attorney General Ken Paxton noted that the law contains no exceptions to the “for unborn children with fatal conditions who are unlikely to survive long after birth.” 

Instead, the only justification for an abortion is that continuing a pregnancy creates a risk to the health of the pregnant woman. The key question now is whether the determination of risk should be made by doctors, lawyers, or legislators. The Supreme Court decision was clear. Only doctors should make such determinations. The Supreme Court wrote, “A woman who meets the medical-necessity exception need not seek a court order to obtain an abortion. Under the law, it is a doctor who must decide that a woman is suffering from a life-threatening condition during a pregnancy, raising the necessity for an abortion to save her life or to prevent impairment of a major bodily function.”

The Supreme Court was also clear that the risk of harm need not be imminent. The decision stated, “The exception does not cover . . . only adverse results that will happen immediately absent an abortion, nor does it ask the doctor to wait until the mother is within an inch of death or her bodily impairment is fully manifest or practically irreversible. Rather, the exception is predicated on a doctor’s acting within the zone of reasonable medical judgment, which is what doctors do every day.”

In short, the Supreme Court decision clearly empowers physicians to exercise their reasonable medical judgment, given the unique facts and circumstances of each patient, without deferring to a judge. One way to read this decision is as the Court’s attempt to keep each case from coming to court.

The case can and should be read as a loss for Kate Cox and her physicians. But there is a clear silver lining. The Texas Supreme Court decision can be interpreted as both empowering physicians – by saying that only they and not lawyers can decide whether a woman’s health is seriously jeopardized — and coaching them on how to provide care for patients in ways that will withstand legal scrutiny. It invites doctors to use their “reasonable medical judgments” and to be offering legal protection if they do.

This opinion, somewhat surprisingly, aligns closely with the work of pro-choice lawyers who are trying to protect the integrity of the medical profession and protect the right of women to receive medically appropriate reproductive health care. Katie Watson, for example, offered physicians the following advice, “Providing standard medical care to people whose health or life is threatened by their pregnancy is neither civil disobedience nor covert lawbreaking; it isn’t even resistance. It is wise interpretation of existing law as applied to specific facts, fidelity to clinicians’ fiduciary duty to stay focused on patients in medical need, and acceptance that choices of historic consequence rarely come with zero risk.”

It is time for Texas doctors, hospitals, and professional societies to play offense rather than defense and to exercise their professional judgment as the Supreme Court is encouraging them to do.

John D. Lantos, MD, is a bioethicist and general pediatrician in New York City and a Hastings Center fellow. He blogs about bioethics and health policy at johnlantos.com/blog.

Illustrative image for Involuntary Donation Animal Welfare and Xenotransplantation

Bioethics Forum Essay

Involuntary Donation: Animal Welfare and Xenotransplantation

The realized promise of xenotransplantation seems to be quickly approaching, following the medical breakthrough of a pig kidney functioning for a record two months in a deceased human body. This milestone has received overwhelmingly positive media attention despite the complexity of the technical and ethical hurdles to overcome. Ethicists, physicians, and transplantation specialists have shared their apprehensions about the risks of implanting animal-grown organs into humans, including zoonotic diseases and organ rejection, which occurred in the latest attempts at pig-to-human heart transplants. However, conspicuously absent from these discussions is a major stakeholder: the animals.

Ethical questions about how we are using animals–let alone questions of whether we should use them–to create organs to transplant into humans have, unsurprisingly, been overshadowed by concerns over human research subjects and organ recipient protections. If mentioned at all in medical and bioethics literature and in the media, animal considerations have been relegated to a brief acknowledgment. Bioethicists have a duty to fully assess the ethical consequences of novel health care interventions on both those who benefit and those who are harmed. Sentient nonhuman animals are an intrinsic part of that moral consideration.

There are three crucial points to consider about the welfare of nonhuman animals used for xenotransplantation. The first point concerns harm done to the animals by the process used to create the pigs and grow the organs. The second concerns gaps in animal welfare oversight. The third is the misconception that pigs are the only animals used in the research; xenotransplantation research has required hundreds of nonhuman primates, too.

Creating organs in pigs that can be used by human bodies is technologically complex and currently inefficient and costly. Different companies use distinct, proprietary techniques. The process usually begins with a collection of pig ovaries, typically sourced from slaughterhouses, which are used to create genetically engineered embryos. The embryos have alterations made in certain genes, have human genes inserted, or have both changes. The genetic alterations are done for a variety of reasons, including preventing organs from growing too big for human use, reducing the chance of zoonotic disease transmission, and minimizing the risk of organ rejection.

The genetically engineered embryos are then cloned to produce exact copies and are implanted into surrogate sows for eventual surgical births. The donor pigs are raised separately from their mothers in a highly sanitized indoor environment. While these conditions preserve the pigs’ status as disease-free, they do this at the expense of the animals’ welfare and quality of life. Compounding animal welfare concerns is the inefficiency of the process. It takes many surgical and medical procedures on many sows to produce one viable pig for organ procurement. Each donor pig must endure a lifelong schedule of invasive procedures and monitoring until it is killed and its organs are harvested for transplantation.

The second point concerns animal welfare regulations. Pig-to-human xenotransplantation research projects are huge endeavors, involving international partners and multiple funding sources. In the United States, unlike in other regions such as the United Kingdom and the European Union, oversight of animal research is decentralized, handled within each institution, and differs based on the funding source. When projects include international partners and a mix of private and public funders and sites, it can be unclear what animal welfare regulations are mandated. Standards of care may also differ at each research site. Given the problematic history of xenotransplant animal welfare violations, one might conclude that researchers have an incentive to produce pigs for xenotransplantation in the U.S. to circumvent more stringent welfare standards elsewhere. Indeed, that is precisely what was alleged in the year 2000 when Novartis moved its xenotransplant research subsidiary from the U.K. to the U.S.

Animal welfare concerns in xenotransplantation are not limited to pigs. Pig organs must be transplanted into nonhuman primates before they can be transplanted into humans, according to Food and Drug Administration research requirements. These preclinical trials are fraught with welfare concerns, as primates undergo several invasive medical treatments and surgical procedures to implant pig organs, frequently leading to premature death. While the involvement of pigs in xenotransplantation is obvious, most people probably don’t realize that nonhuman primates are also involved. But the public should know. Data on people’s attitudes toward the use of nonhuman primates in xenotransplantation is needed in the literature for consideration by bioethicists and others concerned with the animal welfare issues it raises.

A powerful, yet deeply problematic analogy that has been used to undermine concerns of animal welfare in xenotransplantation draws a comparison between industrial pork production and xenotransplantation. Namely, if pigs are already bred for human food consumption, it should be permissible to breed them for transplantable organs. But this argument is flawed. Industrial pork production is ethically fraught for both the animals and the laborers in the industry. There are dangers in using this practice as the standard against which to compare the use of pigs in xenotransplantation when the standard itself is ethically questionable. This line of thinking perpetuates the lack of moral consideration of the use of livestock animals in different contexts, something that deserves careful deliberation.

If xenotransplantation proves successful in clinical trials, the use of nonhuman animals to produce organs suitable for transplanting into humans is both inevitable and essential. But the simple fact that xenotransplantation helps people is not reason enough to disregard animal welfare concerns. We must consider how this emerging medical treatment affects the nonhuman animals involved.

The first step is for private entities that produce and test animals for xenotransplantation to be transparent about how the animals are treated and which animal welfare oversight standards are used. Claiming the need to protect proprietary research secrets or intellectual property of the pig creation process is not a justifiable excuse for avoiding transparency. This basic and fundamental information is necessary for bioethicists and others to examine ethical issues that nonhuman animals face in xenotransplantation research methods. Only then can there be well-informed, nuanced deliberation on how to ensure a high standard of animal welfare and regulatory oversight, and how to limit the number of animals used in this novel research. Until there is greater transparency, we will remain where we are now: unaware of the cost to the nonhuman animals that are critical to the success of pig-to-human organ transplants–and at a loss for how to weigh them.

We find ourselves at a crossroads, both hopeful about this emerging medical breakthrough and troubled by its implications for fellow sentient and intelligent beings.

Sana Baban, MBE, is a project manager and research assistant at The Hastings Center. @sana_baban

Ashlin Amano, MBE, is an administrative coordinator in Columbia University’s department of Medical Humanities and Ethics. @ashlin_amano

Lisa Moses, VMD, a veterinarian and animal focused bioethicist, is a faculty member at Harvard Medical School’s Center for Bioethics and a senior advisor to The Hastings Center.

silhouette of woman in front of window

Bioethics Forum Essay

Does Calling Severe Anorexia a Terminal Condition Matter?

What is at stake in calling extreme, end-stage anorexia nervosa (AN) a terminal condition? In this context, “terminal” is used in the broadest sense, that is, leading to death in a foreseeable length of time, not the narrower sense in which “terminal illness” is an eligibility requirement for medical aid-in-dying (MAID) or Medicare hospice reimbursement in the United States. In this broader sense, calling extreme AN a terminal condition may be thought to have implications for end-of-life decisions, such as the refusal of life-prolonging treatment or voluntarily stopping eating and drinking (VSED). I will argue that this is a mistake, although one that needs explanation.

Patients with extreme AN are natural candidates for hastening death by VSED. Normally VSED requires those who pursue it to be sufficiently decisive and determined to overcome a strong natural desire to eat and drink. Patients with severe AN, however, do not want to eat. In fact, they want not to eat. 

Vigorous discussion of whether it is appropriate to classify extreme AN as a clinically terminal illness was initiated in 2022 in the Journal of Eating Disorders by Guadiani, Bogetz, and Yager. They argued that such patients may be regarded as terminal even though they might again eat enough to survive without being force-fed. And if their condition is terminal, it is difficult to defend force-feeding them. Several commentators disagreed, among them Guarda et al.,  and the controversy recently attracted coverage in the Washington Post.

Since AN is a mental illness, some call into question whether patients with the condition have the decision-making capacity needed to assert their right to stop eating and drinking. On the other hand, even with a mental illness, supporting the patients in extreme AN in refusing to eat and drink may be easier to defend if their condition is terminal.

The situation is murky, indeed. Can it be clarified? I believe it can.

1. To start with, competent patients have the moral and legal right to refuse food and water by mouth, just as they do to refuse lifesaving treatment. The decision-making capacity required is not exemplary rationality or freedom from all compulsions or misconceptions, only an understanding of the patient’s own condition, of the treatments and assistance with food and drink that are available, and of the consequences, including death, of refusing them.

2. Exercising this right is generally not dependent on whether the patient’s condition is terminal. The right to VSED and to refuse lifesaving treatment still apply, for example, to those with chronic conditions that are not terminal. One might then infer that the whole controversy about whether to deem extreme AN a terminal condition is largely irrelevant. Ultimately, terminal does not do the definitive moral work; the patient’s voluntary, informed consent does. The issue, though, is still substantively significant. For one thing, the further away from naturally dying the refusing patients are, the more caution is in order in deciding whether to accept their refusal. Other details, too, need to be noted.

3. In addition, a condition can be terminal even when the patient’s decision makes it such. In hospice eligibility, for example, deliberately refusing life-extending cancer treatment does not disqualify a patient from her prognosis being terminal. Similarly, AN patients’ refusal to eat does not bar their condition from being terminal.

4. AN is not rendered significantly different because it is tied up with the person’s very identity. Angela Guarda and Cynthia Bulik have argued that since AN is tied closely to the person’s very identity, when AN patients refuse food or treatment, it their illness, not they themselves, that is speaking. It is a weak argument. If an AN patient defines her very self in part by her AN, then when she speaks, of course her illness is speaking. Or turn it around. Suppose that her illness is speaking, then given the close identification, she, too, is speaking.

5. Lack of good research on a psychiatric illness like AN is no reason to deny patients the right to refuse food and drink. Steven Dunn, whose daughter died as a result of severe anorexia, has argued that since research on psychiatric conditions like extreme AN is currently thin, we do not have to abide by patients’ death- hastening refusals. Comparisons, though, refute this argument. If a person afflicted with a relatively new virus, for example, refuses the available, partially effective treatment, we should still withhold the treatment even if research on the condition is in its infancy. Some patients may want to hang on in the hope that something more effective is around the corner, but if they do not, we should not impose the available treatment on them. In the case of extreme AN, moreover, we have little reason to think that significantly better treatment is around the corner.

6. At some point, enough is enough. Even if therapy or feeding can initially be forced on such patients, that does not mean caregivers may resort to it indefinitely. Guardini and colleagues push the question to those who want to continue forced therapy: when is enough enough? The questionable decision-making capacity of patients with severe AN may justify force-feeding for a limited time, but if they are obviously suffering, how long is such coercion justified? They are, after all, able to understand that not eating will lead to death, and they understand the treatment or feeding that has been imposed on them. In these circumstances, accepting their refusal is the compassionate and respectful thing to do.

Whether to regard severe end-stage AN as terminal is a less important issue than most parties to the controversy have assumed. But whether such AN is appropriately characterized as terminal, the justifications offered for force-feeding are weak.

Paul T. Menzel, PhD, is professor of philosophy emeritus of Pacific Lutheran University and the co-editor, with Timothy Quill, Thaddeus Pope, and Judith Schwartz, of Voluntarily Stopping Eating and Drinking: A Compassionate, Widely Available Option for Hastening Death (Oxford University Press, 2021). His most recent book, with Bonnie Steinbock, is Bioethics: What Everyone Needs to Know (Oxford University Press, 2023).