Experiments on animals date back to at least 6 BCE when ancient Greek physicians, culturally forbidden from cutting open human bodies, turned to nonhuman bodies. By the 17th century, philosopher and scientist Francis Bacon asserted that the dissection of living animals could “sufficiently satisfy” as a substitute for human experiments. Although nonhuman primates have been dissected for ages, the systematic inclusion of nonhuman primates in research began in the last century.

After the Second World War, revelations of human research abuses led to the establishment of guidelines for the conduct of research with humans, such as the Nuremberg Code and the Declaration of Helsinki. By 1979, the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, appointed by the U.S. Congress, published The Belmont Report, which laid ethical foundations for 20th century human research protections. The Belmont Report centered on the principle of justice and the importance of avoiding the selection of human research subjects based on convenience, accessibility, or manipulability.

While it was well-intentioned and rightly protected vulnerable populations, such as children and imprisoned persons, The Belmont Report encouraged a shift to research involving nonhuman primates and other animals. This shift has resulted in unresolved moral and scientific problems that can now only be addressed by another paradigm.

Today, unlike in the 17th century, scientists easily recognize the truth in the saying “mice lie and monkeys exaggerate,” which points to a well-known problem in biomedical research: using nonhuman primates and other animals in research fails more often than it succeeds. Approximately 90 percent of new investigational drugs–drugs that appear safe or effective in monkeys and other animals–fail to be safe and/or effective in humans. Nearly 100 percent of the drugs developed for Alzheimer’s in decades of research have failed. As researchers at the Oregon National Primate Research Center in Beaverton wrote in 2021, “in the rhesus macaque model of aging, all four major hallmarks of [Alzheimer’s disease]—significant cognitive decline, amyloid beta plaques, p-tau tangles, and neuronal death—do not reach the pathological levels of clinical [Alzheimer’s disease].” In other words, these monkeys do not develop Alzheimer’s disease.

If researchers were to extend The Belmont Report’s principle of justice to nonhuman primates and other animals, they would perhaps acknowledge that the continued use of these animals is a matter of convenience, accessibility, and their vulnerability to coercion rather than a matter of sound science. The translational failures of science discount lives that are utterly thrown away in experiments that we have good reason to expect will fail. Animals are treated like disposable equipment rather than as conscious, living, feeling beings.

Translational failures also harm humans—those who will face the risks of human experiments based on animal research and those who will continue to wait for medical treatments that are promised but not delivered. The translational failures of biomedical research are not just a scientific problem, but a moral problem—a failure to recognize the value of both nonhuman and human lives.

Failures to transform medical research are propelled by institutional biases and by limitations in transparency and in accountability for spending trends—all of which are complicated by long-standing relationships between the pharmaceutical industry, academia, and government. This network of influence has contributed to a shift away from health research and planning that was historically focused on the public interest to research priorities that are now largely driven by profit margins. Many stakeholders within the industry-academia-government complex have an interest in animal research remaining the norm. The National Primate Research Centers are a notable example.

Nonetheless, public pressure does from time-to-time break through and cause policy makers to reevaluate the norm. For example, in 2011, following a request from the U.S. Congress and the National Institutes of Health, an Institute of Medicine  Committee on the Use of Chimpanzees in Biomedical and Behavioral Research concluded that most current uses of chimpanzees in research were unnecessary. Chimpanzees are humans’ closest living relatives, yet chimpanzee experiments are still viewed as unreliable and unnecessary. A growing number of physicians and scientists realize that evolutionary and individual differences within and across species impede the translation of animal research findings to humans—even for animals who are so like us.

This year, in response to a request from Congress and the NIH, the National Academies of Sciences, Engineering, and Medicine (comprising the former IOM) is again examining the use of nonhuman primates in research. But rather than asking if monkeys should be used in research, the NIH’s mandate to the NASEM committee leaves that important question off the table. To protect the status quo, the committee is comprised of individuals entrenched in primate research, and the only members to disclose conflicts of interest are those with an interest in nonanimal methods.

But the status quo isn’t working, as decades of science demonstrate. Across the US, the families of the estimated six million people living with Alzheimer’s disease—and the physicians treating them—are desperate for answers. They know the suffering Alzheimer’s can cause, and they want more effective prevention and treatment strategies.

As Thomas Insel, the former National Institute of Mental Health director, explained in his book Healing, we need to shift from relying on reductionist models of disease to looking at what patients, families, and communities living with various forms of psychiatric and neurological illness experience and need. This shift, overturning the status quo, requires investing in ethically designed studies that center on patients and population-based interventions, as well as on science that is centered on human biology and systems. Such a shift requires recognizing the failure of 17th century ideas, and reimagining and modernizing biomedical research to meet the real needs of patients and the demands of justice.

Hope Ferdowsian, MD, MPH, is an associate clinical professor at the University of New Mexico School of Medicine, and president and CEO of Phoenix Zones Initiative. @HopeFerdowsian

L. Syd M. Johnson, PhD, is an associate professor at the Center for Bioethics and Humanities and a clinical ethics consultant at Upstate Medical University in Syracuse, N.Y. @LSydMJohnson

The post Primates in Medical Research: A Matter of Convenience, not Sound Science appeared first on The Hastings Center.

This quote from Cecilia Igwe-Kalu describes her experience as a nurse confronting racism in health care. In a recent symposium dedicated to this problem, the journal Narrative Inquiry in Bioethics gives voice to what many BIPOC health care professionals already know—their work culture and environments are not diverse, equitable, inclusive, or anti-racist. Worse, they are often ignorantly or willfully hostile.

The symposium, “Experiencing Racism in Health Care: Stories from Health Care Professionals,” is a rallying cry to confront racism in health care by looking through the lens of professionals afflicted by it. There is abundant testimonial evidence of being invisible, unheard, silenced, marginalized, underestimated, undervalued, gaslit and made to feel inferior and “othered.” Calvin E. Bradley, Jr., a health care chaplain (and one of The Hastings Center’s Sadler Scholars), writes: “Many times in healthcare, I have been reminded through the actions of others that my expected role is to be seen but not heard; patronized but not validated; and present but not influential. It is not my size or skin color that most threatens or offends, but it is the ability to think freely and to be creative, to challenge and cultivate change, and most of all, to love people genuinely without return. It is that I both give respect, and demand respect from those around me. But most critically, it is that I have the ability to do all of this while being a Black man in healthcare.”

Through this enlightening and instructive symposium of first-person narratives about racism, the reader is left with the overarching question of why. With the ratification of civil rights laws and professional ethical codes of conduct many decades ago, why we are still here? The health care field, in general, is an educated community that has at its core the organizing principle of “do no harm.” One easy answer is that some traditions are hard to break. “One might think that becoming a physician alleviates Asian American racial dynamics, but the culture of medicine is not immune to microaggressions,” writes Kimbell Kornu. “As a medical student, I enjoyed rotating at the VA hospital because of the veteran population. However, immediately after I walked into a patient’s room, a veteran told me, ‘Go away. I don’t want a Jap doctor.’ Despite my gratitude for this veteran’s service to America, I was not considered American enough to be involved in his care.”

A more egregious possibility is that structural norms and individuals with power and influence condone a discriminatory culture, leveraging structural and interpersonal superiority against vulnerable and marginalized groups, thereby perpetuating a timeless resistance to view all persons with the respect and dignity that our principles and words on paper would dictate.

The symposium editor, Gloria A. Wilder, along with four expert commentary authors and the narrative contributors, speak to inequities rooted in the history of racism in the United States, which might be more accurately characterized as white supremacy. In her introduction to the symposium, Wilder states: “The closer you are to ‘Whiteness,’ the more access you have to privilege. The authors reflect upon the dogged denial of privilege and the resulting con­sequences of maintaining the status quo.”

Perhaps it is time our professional health care community and society at large reframe racism by focusing on those in the racial majority with power and influence who are ill-equipped or refuse to change their attitudes and beliefs. The presence and recognition of racism are denied and amorphous to the person who is privileged to be insulated from its impact. This protective cocoon cannot remain if the white majority takes seriously their role in addressing racism.

“Bioethicists have written on the field’s refusal to engage meaningfully with racism and its deleterious effects on health and well-being, arguing for the recognition of racial justice as a bioethical issue,” writes Nathalie Égalité in a commentary. The study, application, and practice of ethics provide a framework, a code of moral values, and a set of standards and virtues that we—all people–should consult as a source of guidance. Despite having persuasive data that racism is immoral, destructive, and costly, we are nonetheless stuck at a critical impasse. Reason and our bioethical stance fall short in transforming human behavior and structural traditions.

None of this seems to effectively challenge deeply held beliefs and behaviors. Author Zaiba Jetpuri describes an interview she had with a hiring physician for a scribe position. Upon meeting Jetpuri, who wears a hijab, the hiring physician explains, “We don’t allow any accessories here—no hats, no jewelry, no religious affiliations here. People aren’t allowed to wear necklaces with crosses.” But she also said, “Wearing your headscarf here would make my patients scared.”

Personal and institutional accountability is lacking, even though everyone stands to benefit, and national health outcomes will improve, without racism. In their commentary, Aletha Maybank and Fernando De Maio, of the American Medical Association, quote from a 2021 JAMA podcast in which the then-deputy editor said, “No physician is racist, so how can there be structural racism in health care?” White privilege and a lack of awareness were emblematic with the hosts of the podcast and the quote, which was widely broadcast on Twitter.

If we want to achieve an anti-racist culture and work environment, willful ignorance and the “pattern of righteous indignation,” as Wilder puts it, must be confronted with mandatory education, rigorous enforcement, and serious consequences for a failure to act ethically. Wilder states, “Racism requires complicity,” and the current culture of permissibility must be replaced with a culture of intolerance. It is no longer acceptable for people to be unaware and claim ignorance when it comes to racism, not when valued health care professionals and historically marginalized communities are suffering and sharing their painful reality with us. The 21^st century failure of institutional leadership to confront and eliminate racism is a matter of choice, a choice to live in one’s privileged reality devoid of such racist experiences and the choice to discriminate against and disadvantage others for personal and/or institutional benefit.

In the historic 1965 debate, “Is the American Dream at the Expense of the American Negro?”, between author and activist James Baldwin and conservative political commentator William F. Buckley, Jr., Baldwin captured the essence of our ongoing dilemma when he said, “The certain awkwardness I feel has to do with one’s point of view, one’s sense or system of reality.” I feel a certain awkwardness in knowing that my reality of experiencing racism is easily dismissed by others who do not share the same reality. Like me, the contributors to this symposium share the unfortunate reality of experiencing racism, and it is for others who don’t experience racism to learn how to be anti-racist. For our professional community to become anti-racist, we must work toward a shared reality, one in which everyone’s sense or system of reality matters and moves closer to achieving equity, fairness, and justice for all.

Racism is categorically antithetical to the four ethical principles of autonomy, beneficence, nonmaleficence, and justice, to the concept of respect for persons, and to laws espousing all persons deserve the right to citizenship, equality, and liberty. What will it take for all of us—especially our white allies—to act now and adhere to the ethical imperative to hold each other accountable to an anti-racist and anti-white-supremacist culture? As Dr. Wilder writes, “This moment is a reckoning with who we are to each other and an aspiration of who we want to be.”

I want to see America be what she says she is

in the Declaration of Independence and the Constitution.

America, be what you proclaim yourself to be!

– Pauli Murray

Pringl Miller, MD, (@pringlmillermd) is a board-certified general surgeon and hospice and palliative medicine physician trained in clinical medical ethics. Dr. Miller is the founder and executive director of Physician Just Equity, a nonprofit organization that supports and empowers physicians and surgeons experiencing unjust workplace conflicts. (@EquityDocs)

The post Experiencing Racism: Health Care Professionals Speak Out appeared first on The Hastings Center.

The majority opinion disagreed and sought to distinguish other decisional privacy rights from abortion noting, “The exercise of the rights in Griswold, Eisenstadt, Lawrence, and Obergefell does not destroy a ‘potential life,’ but an abortion has that effect.” Nonetheless, commentators haven’t been reassured and the concern persists that the reversal of Roe is the beginning of an onslaught on our freedoms.

I want to add one more worry to the list and point to self-determination at life’s end. Here we have Justice Neil Gorsuch to worry about. Back in 2017, during his confirmation hearings, I wrote an essay for The Hill urging senators to ask him about end-of-life care and the right to refuse life-sustaining therapy. As might be expected, the focus of the hearings was on his views about abortion. But he had authored a book entitled The Future of Assisted Suicide in Euthanasia, raising questions about his views on choice at the end of life.

As I recall only Senator Diane Feinstein questioned Gorsuch about his views on “death with dignity.”  She said, “You make the statement that there is no justification for having anything to do with the end of some’s life, encouraging the end of life.” Gorsuch replied by invoking the memory of his father: “And I’ve been there with my dad and others. At some point, you want to be left alone. ‘Enough with the poking and the prodding. I want to go home and die in my own bed, in the arms of my family.’” It was an emotional and reassuring moment for those who want to maintain choice at the end of life.

Feinstein pressed Gorsuch: “Supposing you cannot handle the pain and you know that it’s irreconcilable?” Again, Gorsuch’s testimony was reassuring: “Senator, the position I took on that in the book was anything necessary to alleviate pain would be appropriate and acceptable, even if it caused death . . .  not intentionally, but knowingly. I drew a line between intent and knowingly. I’ve been there. I’ve been there.”

In personalizing the response, Gorsuch gained sympathy in the room, and this line of questioning was abandoned. But it is a conversation that needs to be revived. In the wake of Dobbs, it is important to consider how Gorsuch’s judicial philosophy might be expressed in a case that came before the court that contested a patient or a family’s right to make end-of-life decisions by alleging that these established choices were akin to assisted suicide.

As I re-watched Justice Gorsuch’s testimony before the Senate Judiciary Committee I became more concerned about the personal nature of his responses to Senator Feinstein. His replies were not conceptual articulations of the legal right to privacy that undergirds end-of-life care; rather, they were anecdotal and evasive. They should provide as much reassurance as the “settled law” responses that all three Supreme Court justices nominated by Trump gave when asked about the precedent established by Roe.

One would think that this is settled law in the wake of Quinlan, Cruzan, and Quill v. Vacco, that stare decisis would argue against the erosion of rights that date back five decades. But Roe and Quinlan were products of the same era. Both prized autonomy and dominion over life’s most important choices. And now that Roe has been overturned, other well-established precedents that rely on the logic that informed that decision, including those that govern decisions at life’s end, could be vulnerable.

My concerns about Justice Gorsuch are laid out in The Future of Assisted Suicide and Euthanasia. While most of the volume makes the case against assisted suicide and euthanasia, his argumentation seems to equate killing with letting die. This would undermine the right of patients and families to withhold or withdraw life-sustaining therapy. Two examples are very concerning. Writing of a case from Britain, he questions a ruling in which “the court seemed to assume that a competent patient has a right to refuse care, even if in doing so it might evince an intent to die.” He also referred to Bouvia v. Superior Courtas “euthanasia by omission.” That case centered on the rights of a competent patient to refuse artificial nutrition and hydration. Elsewhere he questions surrogate decision-making for patients who have lost capacity.

The challenge here is intent, and that can sometimes be in the eyes of the beholder. While Justice Gorsuch might endorse “enough with the poking and prodding,” what if those disruptions could save a life? Would ceasing to poke and prod “evince an intent to die”? And who gets to make that determination–the patient and their family or an emboldened conservative majority on the Supreme Court?

 As America prepares for the further erosion of reproductive rights and marriage equality, the views of Justice Gorsuch bear close scrutiny. The final chapter of his book on assisted suicide and euthanasia warrants a careful read, starting with its title, “Towards a Consistent End-of-Life Ethics: The ‘Right to Refuse’ Care for Competent and Incompetent Patients.” Placing a right to refuse in quotations is particularly worrisome for someone who also calls for respect of the “inviolability of human life principle.”

That principle has been the alpha and omega of this court. What began at the beginning of life could well affect how we die. It would be naive to think otherwise.

Joseph J. Fins, M.D., M.A.C.P., F.R.C.P., is the E. William Davis Jr. M.D. Professor of Medical Ethics,  a Professor of Medicine and chief of the division of medical ethics at Weill Cornell Medical College, Solomon Center Distinguished Scholar in Medicine, Bioethics and the Law and a Visiting Professor of Law at Yale Law School and a member of the Adjunct Faculty at the Rockefeller University. He is a Hastings Center fellow and member of the Center’s board of trustees.

The post After Roe, What’s Next for End-of-Life Care? appeared first on The Hastings Center.

Historically, debates over reproductive autonomy have produced some strange bedfellows when it comes to disability. Anti-abortion policymakers and advocates often appeal to the value of disabled lives when they promote legislation that prohibits abortion on the basis of fetal anomalies, co-opting the commonly held disability-rights position that such abortions are morally problematic.

Though what gets called “the disability community” is nothing if not heterogeneous, even those who support abortion rights often have concerns about certain elements of reproductive choice, such as the dwindling of newborns with Down syndrome in countries with widespread prenatal genetic testing. It would be easy to think that there is a conflict between valuing disabled life and demanding full reproductive autonomy, but this would be a mistake. The calculus changes if we acknowledge the simple fact that disabled people have sex—and, yes, get pregnant—a fact that would no doubt make some lawmakers’ heads explode.

As a disabled scholar who thinks a lot about disability ethics and health care, I can’t help but notice that the debate over fetal anomalies doesn’t capture the full set of concerns that I share with disabled friends of so-called childbearing age. That’s because it only considers abortion through one limited, if still important, lens: prospective parents’ choice of whether or not to have children with disabilities. These prospective parents are generally presumed to be nondisabled, or at least their own disability status does not enter into their considerations about whether or not they could care for a disabled child. The anti-abortion right’s singular focus on disabled fetuses appropriates disability advocates’ real concerns about eugenics while, ironically, dismissing the possibility that disabled people can or should become pregnant.

Given that people with disabilities are now estimated to make up more than a quarter of the U.S. population and abortion will now be banned in about half of the U.S. states, we are far past due for a reckoning with what reproductive justice requires for disabled people. For many of us, it means affordable, accessible, and safe abortions—whether or not we want children.

Disability is as varied as the human condition, and many disabled people build thriving biological families that flout ableist assumptions about who can be a parent. At the same time, certain disabilities and chronic conditions can make pregnancy extremely high-risk and physically torturous in ways that restrictive state laws tend to disregard. As clinical ethicist Michele DeMarco has written, a person with a cardiac condition could be told that pregnancy would be “tantamount to suicide” and still not necessarily qualify for an abortion under the new wave of anti-abortion legislation and trigger laws that will now take effect in 13 states. The language of these laws is so vague that doctors will undoubtedly avoid abortions that are not “immediate” emergencies out of fear of lawsuits or prosecution.

It is not hard to imagine how this hesitancy could harm people living with all kinds of chronic illnesses and disabilities. Some people with psychiatric disabilities might fear a relapse of crisis-causing symptoms as a result of the medication changes and hormonal fluctuations that accompany pregnancy. Some of the 1 in 4 diabetics who are forced to ration their insulin, making it difficult to keep their blood sugar in the range recommended for pregnancy, might fear that being pregnant would exacerbate kidney disease and neuropathy, which they already contend with. But even if people in abortion-restricted states fear for their lives with these risks, they likely would not be able to end their pregnancy until their life was acutely under threat. The fact that the physical stress of a pregnancy could take years off a chronically ill person’s life would be of little to no consequence under Mississippi’s abortion law, for example, which contains a “life of the mother” exception only in the case of a “medical emergency” that “necessitate[s] the immediate performance or inducement of an abortion.”

While it is still possible, if not easy, to get a hold of medication abortion even within states with abortion bans, not everyone can take these pills: they are contraindicated for people with certain liver, kidney, and inflammatory conditions, and due to the need for self-monitoring and adherence to care instructions they are not recommended for some people with comprehension barriers.

It might be tempting to take comfort in the notion that people can leave their state to get an abortion if they really need one. But this option will exist only for those who are well enough to travel, and who can afford the transportation and time off work that it takes to cross state lines for a medical procedure. Disabled people live in poverty at twice the rate of nondisabled people, and many are prohibited from accumulating savings due to the punishing asset limits on those who receive Supplemental Security Income.

Even if one can afford to travel, doing so can be dangerous and inaccessible for people who rely on durable medical equipment. On average, airlines break or lose 29 wheelchairs a day, leaving the people who need them immobilized and reliant on inadequate alternatives while they await reimbursement. Last year, disability activist Engracia Figueroa died from complications of sores she developed as a result of United Airlines having broken her $30,000 wheelchair. Entrusting life-sustaining equipment to careless corporations can be as much of a gamble as a high-risk pregnancy.

Meanwhile, even if a person does make it off a plane without incident, finding an accessible medical facility is a challenge of its own. Despite the Americans with Disabilities Act’s requirement that health facilities provide reasonable accommodations for disabled patients, many lack basic accessible equipment like adjustable exam tables. Moreover, disabled people often encounter stigmatizing assumptions and attitudes from medical professionals who assume they are either sexually inactive or hypersexual. The continued shrinking of abortion provider networks will make it harder for pregnant people with disabilities to find providers who can meet their needs and treat them with respect—particularly as they are forced to look outside their local communities, where word of mouth can provide important information about a provider’s accessibility and attitudes.

Of course, abortion restrictions do not only endanger people who don’t wish to be pregnant. Many people who want biological children also have conditions that put them at higher risk of adverse outcomes and miscarriage, such as intellectual and developmental disabilities, thyroid disorders, hormonal conditions, and diabetes. Because the medications and surgeries used to end miscarriages are identical to those used in abortions, doctors in countries with abortion bans are often afraid to treat miscarriages and force pregnant people to carry an unviable fetus. This poses clear psychological risks as well as physical ones, as evidenced by the deaths of women in Ireland, Italy, and Poland who developed sepsis after being denied treatment for a miscarriage.

This lack of accessible gynecological care will disproportionately imperil those whose illnesses and disabilities put them at greater risk of miscarriage—especially if they are marginalized in other ways. Racialized health disparities mean that Black women have a higher likelihood of miscarriage than white women, while Black people in general are more likely to be disabled. Access to safe and timely miscarriage care is therefore a matter of intersectional disability justice. If a goal of anti-abortion legislation is to preserve disabled lives, then it makes little sense to endanger the lives of disabled people who want to have children.

An especially horrific outcome of the end of federal abortion protections is the fact that, in many states, people who miscarry or have stillbirths will be vulnerable to prosecution. Law enforcement already targets people whose miscarriages they allege were linked to drug use, overwhelmingly charging women of color. I shudder to imagine how this practice might intersect with the inevitable increase of disabled people forced into pregnancies despite the fact that they rely on medications whose effects on fetuses are understudied or have been shown to pose risks.

For the past 30 years, disability activism has been guided by the slogan, “Nothing about us without us.” When the conversation around disability and abortion is constrained to the interests of fetuses, that “us” is conveniently constrained to entities that can’t participate in the debate. And so, when anti-abortion lawmakers cynically adopt disability critiques to restrict access to abortion, they neglect the diverse needs and desires of disabled people, many of whom object to yet another impingement on our bodily autonomy after decades of fighting for self-determination. People with all kinds of disabilities should have the right to make families however we choose, which means not facing stigma for wanting to have children, being adequately supported through high-risk pregnancies, being taken seriously about our own risk assessments, and having equal access to the providers and procedures we need to remain safe.

It’s easy enough to profess to care about disabled lives in utero. But it’s time to start listening to us about what we need outside the womb.

Liz Bowen, PhD, is the Rice Family Fellow in Bioethics and the Humanities at The Hastings Center. @lizbowhunter

The post The End of Roe v. Wade Will Be a Nightmare for Disabled Americans appeared first on The Hastings Center.

Ethical conflict and distress among veterinarians are common and widespread. In the first study of this problem in North America, two of us–Lisa Moses and J. Wesley Boyd—surveyed almost 900 veterinarians. Sixty-nine percent of them said they had felt moderate to severe distress about not being able to give animals what they thought was the right care. One of the most surprising findings was that requests for, and the provision of, “futile” care caused more distress to veterinarians than any other clinical situation, including owners asking to have their pets put to sleep because they can’t–or are unwilling to–pay for treatment. Study participants considered care to be futile when further or ongoing treatment wouldn’t improve the outcome and would result in further pain and suffering on the part of the animal patient.

We have witnessed requests for futile care firsthand and seen the extraordinary toll that they can take on members of the entire veterinary care team. These cases make us feel that we are harming patients by continuing to treat them and causing needless suffering. An example was the geriatric orange tabby cat, who after spending days recumbent and barely responsive in an oxygen enriched cage, was scheduled to have another round of chemotherapy for his metastatic cancer, against his veterinary oncologist’s and palliative care veterinarian’s advice.

To explore futility more deeply, our colleague Nathan Peterson led a more recent survey of veterinarians. Of the 477 who responded, 99% reported encountering futile care at some point in their career and 42% said that it occurred often (more than six times a year) within their practice. The reasons offered most often for providing futile care included allowing time for an owner to be present for euthanasia, satisfying an owner’s request that all treatment options be exhausted, and the owners not understanding the severity of their pet’s condition. Even though a large majority (76.2%) of respondents agreed or strongly agreed that providing futile care sometimes benefited the owners in some way and a majority were sympathetic to the owners’ feelings, providing futile care can exact a toll on  veterinarians.

The upshot from both studies is that medical futility is a significant contributor to moral distress and burnout. Given how frequently veterinarians encounter futility in their practices–along with the other everyday aspects of veterinary practice, which can also cause distress –it is not surprising that over 30% of veterinarians report feeling depressed and that veterinarians have higher than average rates of suicide. 

Several things need to change to support veterinarians. First, veterinary education should explicitly address the ethical dilemmas faced in practice and acknowledge that mental health can suffer as a result. Second, veterinarians should recognize signs of burnout and depression in themselves and their staff members. Creating practice cultures where ethical conflict and its impact are openly identified, and staff have strategies to manage them, is sorely needed in the veterinary world.

And, finally, pet owners ought to be aware that their veterinarians may share their anguish when a beloved companion is suffering, and that veterinary medical decision-making can be emotionally complex for vets, too. A healthy dose of compassion from all sides, can go a long way to lessening the ethical conflicts and how badly they make everyone feel.

Lisa Moses, VMD (@drlisamoses), is a veterinarian and animal focused bioethicist who is a faculty member of Harvard Medical School’s Center for Bioethics and a senior advisor to The Hastings Center. Nathan W. Peterson, VMD, is a veterinarian and an associate clinical professor at Cornell University College of Veterinary Medicine and  is a master’s degree candidate at Harvard Medical School’s Center for Bioethics. J. Wesley Boyd, MD, PhD (@JWesleyBoydMD), is a professor of medical ethics and psychiatry at Baylor College of Medicine.

The authors thank Hastings Center President Mildred Solomon for her mentorship and inspiration for the first study of moral distress among veterinarians.

The post Veterinarians Often Provide Futile Care. Doing So Comes at a Cost appeared first on The Hastings Center.

It is the workforce and our communities that have benefitted most from DACA. For instance, at the medical school where I work, we have graduated 33 DACA recipients and sent them into the physician workforce. They are a rich source of diversity in a field that struggles with it. More than half of our physicians with DACA self-identify as Latino and speak Spanish fluently. The number of DACA doctors is relatively small owing to the length of training and the difficulty in funding a medical education while ineligible for federal student loans. However, more than 60,000 DACA recipients work in health care. The contributions of these essential workers were often noted early in the pandemic as they put their lives on the line. And, in general, recognition of the contributions that immigrants also make in low-wage but essential jobs threatened for a moment to displace the xenophobia that has been prevalent in recent years in the United States. But that moment has passed and insofar as immigration is at all on the national radar, it is discussed in terms of attempting to discourage asylum seekers from presenting themselves at our southwestern border.

The 10th anniversary of DACA reminds us that when given the opportunity, young immigrants renew our nation’s trademark optimism and determination, the themes of the narrative of the American Dream. This infusion of the immigrant spirit seems most needed now, at a time when our nation is trapped in a post-pandemic malaise that’s fed by an acute labor shortage, an aging population, and a general pessimism about the future. Unfortunately, at 10 years old, DACA is simply inadequate in being fair to these young people and providing for our nation’s needs.

In his remarks announcing the creation of DACA, President Obama acknowledged that as an executive order, this program was not meant to be permanent but, rather, to be a bridge to a legislative solution. We’ve since watched it come under threat during the Trump administration and survive owing only to a Supreme Court decision  based on administrative procedural grounds and President Trump being voted out of office. But even at this juncture, DACA continues to be challenged in the courts. And, of course, as long as young DACA recipients do not enjoy the benefits of citizenship, their contributions to society will be limited by such barriers as ineligibility for federal student loans. But even more important is the limited number of people eligible for DACA.

Most undocumented students attending U.S. colleges do not even have the protection from deportation and the opportunities that come from having the work permit DACA grants. The DACA memorandum contains some arbitrary eligibility requirements, such as that the applicant must have been present in the U.S. on June 15, 2012, and lived continuously in this country for the five years prior. These requirements have not been updated. As a result, the pool of DACA recipients who can eventually join the physician and health care workforce is diminishing and the path forward for undocumented youths who are ineligible for DACA and attending colleges and universities is not clear.

A commitment to justice and fostering the health of the nation requires that the health care superstructure, e.g., professional societies, health systems, academic medicine, public health officials, and bioethicists, need to increase their efforts in two ways. First, in practical terms, we need to create opportunities for those in the undocumented population to be educated and, trained and to practice as physicians and other types of health care professionals. As more students who are undocumented enter higher education without DACA, training and practice pathways that do not require work permits need to be developed.

Some states, such as California and Illinois, require that professional licenses not be contingent on immigration status. Nevertheless, the medical profession remains inaccessible because residency training requires the ability to be paid as an employee of an institution. Creative solutions, such as residency programs that are true education programs and do not employ the trainee or programs that enable the resident to be an independent contractor, could enable qualified undocumented youth to serve in the health care workforce despite not having DACA. Providing these opportunities is warranted both by simple fairness to these young people who have grown up in the U.S. and meet the standards of admission to the profession and also by the needs of the health care workforce.

Finally, health care and bioethics must contribute to fostering a more true and just narrative regarding immigration. This no small task and exactly how to do so is not obvious. But a commitment to fostering health and justice is hard to honor while remaining silent in the face of widespread racist conspiracy narratives that promote fears of invading hordes of inferior ethnicities that are being brought to the U.S. to “replace” white Euro-Americans as voters. We must tirelessly trumpet the contributions of immigrants, both with lawful and undocumented immigration statuses, to health care, as well as the need to utilize more of this talent pool to keep our health care infrastructure staffed and in a way that is maximally suited to serve our nation’s patients. And we must revive and further develop the narrative prevalent early in the pandemic that recognized the dignity and service of essential workers and emphasized the interconnectedness of all of us in the effort to address the pandemic. We must never stop emphasizing that the exclusion of any population in our community from the health care system undermines the benefits to all of us. Health care and bioethics should seek to show that an understanding of immigration that emphasizes its relation to health and health care highlights our unity as a people and should not be an issue that stokes fear and division.

Mark G. Kuczewski, PhD, HEC-C, is the Michael I. English, S.J. Professor of Medical Ethics and director of the Neiswanger Institute for Bioethics at the Stritch School of Medicine at Loyola University Chicago. He is a Hastings Center fellow. @BioethXMark

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I had some difficult decisions to make. I treat cancer patients. My wife, also a physician, works in a military hospital. We both decided that continuing our duties would be the best way to help our country. When, after a couple of days, we learned that our army was heroically fighting the aggressors, saboteurs were being destroyed in the capital, and the government refused to evacuate, we were filled with a sense of pride in the Ukrainian people and we realized that we had made the right decision.

For my cancer patients, the situation was particularly difficult, as they were already under stress from the threat of a deadly disease. The war added greater uncertainty about the future, the likelihood of losing loved ones, housing, work, even being killed. The war has increased the vulnerability of cancer patients, their susceptibility to manipulation and helplessness. There were new problems with logistics, the provision of medicines and equipment, and the migration of patients within and out of the country. In the first weeks of the war, the health care system was paralyzed, reorganizing as much as possible for the needs of the army without attention to the needs of other citizens. There were no special directives or action plans for medical workers and hospitals.

Urgently, it was necessary for me to make decisions independently. Thanks to my bioethics training through a fellowship program of Loyola University Chicago and the Ukrainian Catholic University, funded by the National Institutes of Health Fogarty International Center, I have some principles on which to base my decisions, rather than simply intuition. Initially, I joined the program to study more deeply the bioethical aspects of clinical research. I saw that many rules are violated when conducting research in Ukraine and I wanted to participate in the development of ethical research in our country. Bioethics has now become an integral part of my work and everyday life. When the chaos of war arose around me, I turned to bioethics and its principles to organize needed actions.

The importance of the principle of respect for patient autonomy is indisputable. In the first weeks of military aggression, I observed the extreme helplessness of cancer patients. They were mostly passive and inclined to follow the doctor’s recommendations. Many hardly participated in the decision-making process and some even refused treatment. I had to think carefully about my communication with patients to prevent involuntary manipulations and actions contrary to their actual wishes. First, it was necessary to calm patients, which often required medication. Even more so than usual, I took care to avoid unnecessary fear and panic about missile strikes, death, and suffering of Ukrainians and other manifestations of a military invasion, and the uncertainty of the future or sometimes imminent death due to the progression of cancer. Creating a calm and trusting environment helped patients to participate more actively in their treatment. By focusing on immediate small goals, I was able to help my patients make decisions that aligned with their values, priorities, and worldview.

The principle of beneficence helped me make decisions regarding very practical matters. Caring for patients was complicated by disruptions to the supply of medicines and consumables. We also had to deal with the constant migration of patients (from our frontline zone to the rear, from the war zone to our zone), an increase in very ill patients due to the impossibility of their evacuation, and progressive deterioration the financial condition of both the population and the health care system. We had to adjust oncological care accordingly. This included:

1. Creating and maintaining, from all possible sources, a three-month supply of medicines.

2. Identifying new sources of obtaining and paying for medicines. This required expanding our number and geographical scope of contacts. We now work with many new suppliers and manufacturers, receive deliveries from all over Ukraine and from other countries, and obtain assistance from charitable and humanitarian organizations.

3. Identifying alternatives to scarce medicines and chemotherapy regimens, and continuously monitoring their availability.

4. Using telemedicine whenever possible to limit patients’ need to come to the clinic. (The power supply and internet have not been affected by the war.)

5. Introducing medical support for patients evacuating to safer regions. Contacts have been established with their new treating doctors; local patient communities have been organized for mutual assistance on evacuation issues and treatment options in different countries and different clinics.

6. Introducing free advisory assistance for refugees and other especially vulnerable persons newly arriving in our region from zones of active war.

Considering the principle of justice has helped me avoid unconscious discrimination of patients. While in general, refugees are usually more in need of support due to lack of work, housing, and financial savings, in the conditions of war, all cancer patients have suffered to varying degrees, often no less than displaced persons. Under these conditions, it seemed very important not to formally identify categories of patients, but instead to identify their needs in relation to our local capabilities to provide oncological and other assistance. In the overwhelming majority of cases, the way out in the face of the impossibility of assistance at the local level was medical and consulting assistance in evacuation, primarily to European Union countries, for continued treatment there. Those patients who, due to the severity of their condition, could not be evacuated and at the same time did not have the opportunity to receive the necessary oncological care, received special attention and priority for additional sources of financial and medical support.

Thus, in the conditions of the beginning of military aggression, general collapse and chaos, the use of the principles of bioethics helped me to structure interactions with patients and solve problems as they arose. Since February 24, consultations at our clinic have increased by 110%, and chemotherapy courses have increased by 60%. But the most important thing in the work, of course, is not the numbers, but the health of patients and years of their lives saved. I am grateful for the opportunity to study bioethics and implement its lessons in my daily practice.

Maksym Basarab, MD, was an oncologist in Dnipro, Ukraine, and fellow in the Loyola University Chicago-Ukrainian Catholic University Bioethics Fellowship Program, funded by the National Institutes of Health Fogarty International Center. He died of a stroke last month.

After finishing this essay, he expressed thanks to Emily E. Anderson, PhD, MPH, program director, and all the faculty at LUC and UCU.

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Both the pandemic and gun shootings are threats to public health. Individual approaches to these problems are unlikely to be effective for very long. Many writers, including myself, have suggested that the answer to gun violence is to take a public health approach.

I raised this issue, in large part, because I had cause this week to review an article that I wrote after the 2012 Sandy Hook school shooting, in which  20-year-old Adam Lanza shot and killed 26 people, including his mother, and then killed himself. Like many writers and organizations, I considered mass gun shootings as a public health threat. However, a recent reading of my 10-year-old essay stopped me short:

“If there were an infectious disease that could be prevented with a side-effect-free vaccine, we would look askance at anyone who did not get the inoculation. In fact, if that disease could lead to the death of other people, then under public health law, one might be required to be vaccinated.”

I could not have been more wrong.

The idea of gun violence as public health threat or an epidemic has a different meaning today than it did in 2012, since we are in the third year of a viral pandemic. As I write, the U.S. faces another surge of Covid cases. With one million recorded deaths, only 77.7% of Americans have gotten a single dose of a Covid vaccine, in a time when fourth shots are recommended for many. Only two-thirds (66.5%) of us are fully vaccinated, fewer than half have received their first booster (46.4%). Whether we look askance at anyone who did not get vaccinated depends on our politics: liberals and Democrats are likely to see this as irresponsible whereas conservatives and Republicans are more likely to see refusal to be vaccinated as an exercise of freedom.

Last month, the 9^th Circuit Court of Appeals—known as the most liberal court—turned down a mandate for prison staff in California to be vaccinated against Covid.  New York City reached a high-alert level of Covid transmission this week and yet is only  recommending indoor mask wearing instead of mandating it, which was the response earlier in the pandemic.

The reality is that we have treated gun violence as a viral pandemic. But rather than coming together as a nation and using the power of government to protect the public’s health, which is what I had thought would happen in a disease outbreak, we have treated Covid-19 the same way we treat gun violence—with thoughts and prayers.

Public health in the U.S. has been severely broken in the 21^st century through funding cuts, workplace violence and threats against public health workers, and the politicization of collective action. Efforts to combat the Covid pandemic and gun violence have been anemic. The result is an “on our own” approach. People are left to decide for themselves which precautions to take, if any, against Covid. And it is up to individuals to protect themselves against gun violence. Children participate in active shooter drills, and bulletproof backpacks are part of back-to-school shopping. In both cases, rather than taking an upstream, public health approach, the U.S. puts the burden on the individual, which usually means that the most vulnerable (children, immunocompromised, lower socioeconomic status, disabled, elderly) are sacrificed.

The call for treating gun violence as a public health issue has been answered, just not in the way anyone suspected or hoped that it would be.

Craig Klugman, PhD, is the Vincent de Paul Professor of Bioethics and Health Humanities at DePaul University. @CraigKlugman

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Mandate advocates in California are a savvy bunch. Led by State Senator Richard Pan, a pediatrician, they eliminated the personal belief exemption from California’s mandate for routine pre-Covid childhood immunizations.  After that fight, it seemed that a Covid vaccine mandate would be easy. After all, we were in the middle of a pandemic. Kids were dying or getting strange inflammatory illnesses, missing school, and forced to wear masks. The vaccine studies in adults showed that vaccines were astoundingly safe and effective. Everyone was just impatiently waiting for similarly upbeat results from pediatric studies. Governor Gavin Newson announced in the fall that, as soon as the Food and Drug Administration approved vaccines for children, they would be mandated for children attending public schools. California was on track to proudly be first in the nation to implement such a mandate. In January, Pan introduced a bill to add a Covid-19 vaccine to the panel of vaccines mandated for school entry.  

Opposition to the proposed Covid vaccine mandate was immediate and fierce. Many California school districts took official stands against vaccine mandates and publicly stated that they would not comply.  

The stage seemed set for a showdown.

But the plot was too tidy. Kids, it turns out, are not just small adults. It wasn’t enough to just give them a lower dose of vaccine for them to get the same results as adults. Furthermore, the virus itself wasn’t static. Vaccines were less effective against the new Omicron variant than against prior strains. 

Data from an observational study done by the New York Health Department showed that, prior to Omicron, the Pfizer-BioNTech vaccine was 67% effective in preventing infections in children. Once Omicron hit, its efficacy fell to 51% in teens and 12% in children ages 5 to 11. Furthermore, vaccine efficacy waned quickly in children. For children ages 5 to 11, the vaccine’s efficacy in preventing infections fell from 65% two weeks after the second jab to 12% at a month. Because of rapidly waning immunity, these vaccines  will likely require frequent boosters to be effective. The efficacy of each booster may change as new variants emerge. Nobody knows how often boosters will be needed.

Given the muddy data, nearly 40% of parents across the country say that they would not want their children immunized.  Another 40% wanted to wait and see more data before deciding. Parents’ choices reflect these attitudes.

Pan’s colleague, State Senator Connie Leyva, who chairs the Senate Education Committee and also serves on the Senate Health Committee with Dr. Pan, came out against the Covid-vaccine mandate for schoolchildren. She said,  “We’re too divided as a community. This bill is just too divisive.” 

Senator Pan could see the writing on the wall. Last month he withdrew his proposed bill. He tried to put the best spin on it, shifting the focus to improving the rates of voluntary immunization. “People have questions,” he noted, “and want to get them answered.” 

The reasons for the U-Turn suggest a way of assessing the likelihood that a mandate will be politically feasible. It would seem that mandates are only possible when most people are convinced that the vaccines are safe, effective, and easy to use. But there is an irony here. When most people are convinced that a vaccine is safe and effective, they are likely to voluntarily seek the vaccine. For example, there is no mandate for adults to receive a Covid vaccine, but more than 80% of adults in the United States have had at least one dose of vaccine. Fewer than 40% of children have.

When the public is skeptical about vaccines, mandates may actually hinder efforts to achieve high immunization rates by exacerbating distrust and angering vaccine-hesitant parents and those who support parental choice.  To counter such a backlash, our mandates have always been soft and porous. Most states allow religious exemptions. Many others allow exemptions based on personal beliefs. Such policies say, in essence, that you only need to be immunized if you are not willing to fight against it. Even in the landmark Supreme Court case in which the Justices upheld the rights of states to mandate immunization, the penalty for refusing smallpox vaccine was a $5 fine. Our vaccine policies have always been more like a strong suggestion than a true mandate. That is where California ended up on Covid vaccine for kids. For now,  that is the right place to be. 

California’s U-turn is politically wise and ethically appropriate. Existing Covid vaccines can give some protection to children. But 50% protection is not good enough to justify a mandate. Mandated childhood vaccines generally have efficacy rates above 90%.   Furthermore, for children, we don’t yet know the best dose or schedule for optimum protection from Covid, lowest levels of risk, and most cost-effectiveness. We do now know that studies in adults cannot simply be extrapolated to children. We need to do the studies in kids. Even then, uncertainty will remain. Given the uncertainty, a voluntary program is preferable to a mandate. As parents evaluate the evidence and make decisions, more data will accumulate. 

(Last week, a prospective randomized trial of the Moderna vaccine published in the New England Journal of Medicine reported that, for 6-to-11-year-olds, two doses led to high levels of antibodies that persisted for two months. The study was too small to draw meaningful conclusions about actual infection rates but the authors speculated that, with those antibody levels, it would be 88% effective at preventing disease.)

The skeptical public is right on this one. Until there is stronger evidence that Covid vaccines are highly effective in children, the decision about whether to immunize children should remain with parents.

John D. Lantos, MD, is President of JDLConsulting, LLC and a Hastings Center fellow. www.johnlantos.com; @johnlantos

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Neither of the first two bioethics research centers, The Hastings Center (1969) and the Kennedy Institute (1971), had abortion explicitly on their agendas, but the prospects for control of the genetic traits of future human beings and the scope of parental decisions concerning seriously ill newborns were. Questions about the moral status of future and tiny humans were only one step removed from that of the moral status of the human embryo. In 1970 Hastings co-founder Dan Callahan, with the support of the Population Council, published a monograph,  “Abortion: Law, Choice, and Morality.”  In retrospect, in the 1970s and 1980s Roe enabled the growing field to put abortion per se on the back burner.  

After the Quinlan decision (1976), in the public sphere the most pressing “life” issues came near its end rather than its beginning. The National Commission for the Protection of Human Subjects of  Biomedical and Behavioral Research maintained its focus on human experiments after the revelations of the Tuskegee syphilis study, including those involving the human fetus, without needing to grapple with abortion. The surprise that accompanied the first successful in vitro fertilization in 1978 turned the matter of human reproduction on its head, emphasizing the ability of a technology to satisfy the deep and previously unfulfilled wishes of so many couples to produce a baby rather than to avoid doing so. Even here, though, a few social conservatives in the bioethics community quietly harbored deep reservations about technologically mediated human reproduction, though they would not be fully expressed for many years. 

Not that abortion ever totally left the landscape. In the 1980s, Roe permitted bioethicists like Dan and Sidney Callahan and Baruch Brody and philosophers like Judith Jarvis Thompson to focus on ethical arguments about pregnancy termination that could be persuasive in personal decisions, given that the right to decide was the law of the land. Once again pro-life attitudes could be discerned in the background of issues that did not explicitly engage abortion, such as allegations about prejudicial management of certain newborns in the neonatal nursery and federal restrictions on the use of funds for fetal tissue research. These topics were in effect proxies for the underlying question about the moral status of the embryo. Despite technological advances the fact remained that the prospects for an artificial placenta that would thoroughly undermine the trimester framework established by Roe were thoroughly speculative, thus barely relevant to the conversation.

The 1992 decision in Casey replaced the trimester framework established in Roe, seen as potentially at risk due to technological advances in rescuing very low birthweight neonates, with the “undue burden” standard that restricted states’ ability to limit abortion rights. The intensification of the legal and political debate in the ensuing two decades, taking place in a society increasingly polarized along this and other lines, crept into bioethics as well. Again, though, the fact that Casey generally upheld abortion rights kept the pressure off. This state of affairs can now be seen as having gradually shifted with the achievement of mammalian cloning and especially with the isolation of human embryonic stem cells. Both lent momentum to long-simmering worries among those with conservative views about bioethics and what some have long seen as the dominant liberal slant in mainstream bioethics that had managed largely to set aside the question of the moral status of the embryo for so many years. President George W. Bush’s Bioethics Council under Leon Kass gave voice to what many of its members believed was the need for a “richer bioethics.”

Would American bioethics discourse be changed with the end of a constitutionally protected, even if highly restricted, right to abortion?  In a field that takes as its mission the continuous reflection on moral values in human life and has in essence known no world without a constitutionally protected abortion right, one can hardly imagine it will not. 

Jonathan D. Moreno is the David and Lyn Professor of Ethics at the University of Pennsylvania and a Hastings Center fellow. @pennprof

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