The Importance of History for Bioethics: It is What it Was

by Barry Shuster, Bioethics Program Alum (2013)

At a holiday social gathering last year, I sat with a former colleague, a physician, who inquired about my progress in bioethics. While he finds bioethics interesting and occasionally useful, he broached the familiar refrain: “It’s all relative”.

“We say this is ‘right’ or ‘wrong’ based on someone’s philosophy,” he said. “But there are always other perspectives. The Nazis thought what they were doing was ethical.”

My friend paused to take bite of his sandwich, and looked across the table, waiting for a response. I’m Jewish, so the comment was particularly provocative. If I’ve learned anything from being a lawyer and parenting teenagers, however, it is how not to flinch when provoked. I encouraged him to continue.

“The problem with bioethics is there are no clear standards,” he said. “There is no bar exam for bioethics. Ultimately, doesn’t the ‘who’s right or wrong’ question really get down to who won?

He raised an important question that challenges the validity of bioethics as a discipline, let alone a profession. That is, who is to say whose approach and philosophies are more valid?

I believe most reasonable people appreciate that bioethics – like the humanities, philosophy, and even social sciences – is not physics, whose theories can be explained with mathematical precision and repeated in a controlled setting. Yet bioethics aspires to provide firm moral guidance on matters of life and death.

When I try to explain medical ethics and its moral foundations, I follow the approach of Dr. Robert Baker, Director Emeritus of the Bioethics Program, and trace its historical roots from the Hippocratic tradition. This approach affirms that bioethics is not as much a fixed set of principles and rules, as it is a continually unfolding story of collective response to events. This approach has helped me many times.

In my participation on hospital ethics committees and IRBs, when encountering situations that lack clear guidance, I have noted that those who make the strongest cases often tell stories based on first- or second-hand experience, rather than recite principals and rules.

Once upon a time there was a situation. This approach was taken. These principals were applied. And they lived happily ever after – or not.

And when I find that my own collection of stories fail to provide direction, I tend to lean on history lessons to find my way. I recall a case of a severely disabled infant with a discouraging prognosis. The family wanted to take him home and care for him there. The team wondered if allowing the ventilator-dependent child to go home was ethical. One member of the team – a father of young healthy children – questioned the use of resources and the stress on the family. He wondered aloud if this was a “life worth living.”

Contemplating his provocative comments, I remember thinking back to the concept of “ballastexistenzen” and a case of Baby Doe.

You might also recall that ballastexistenz is a German term, which was used by the Nazis to describe “dead weight existences”, including individuals with psychological and intellectual disabilities, and extended to any group that did not reflect Arian ideals. Considered burdens to society, they were systematically “euthanized”.

In 1982, Baby Doe was born with Down’s syndrome and a correctable tracheoesophageal fistula. The doctor advised that baby’s life was not worth living and it was in the best interest of family to let the child die of starvation and dehydration. The parents agreed. C. Everett Koop, Surgeon General at the time, took efforts to educate Congress about this issue, which ultimately led to the Baby Doe Amendment that extended the laws defining child abuse to include the withholding of fluids, food, and medically indicated treatment from disabled children

My recollection of these events provided a foundation for my reasoning. And they can guide our reasoning going forward. The concept of ballastexistenz prompts us to continue exploring what it means to be “burdensome” in a 21st -century Western medical setting. Baby Doe reminds us to ask, analyze, and discuss what we mean when we say “quality of life”.

Last fall, I taught a graduate-level course titled “Ethical and Legal Issues in Health Care”. As the semester drew to an end, I came across a news item about a prominent cancer doctor in Michigan who admitted in court to intentionally and wrongfully diagnosing healthy people with cancer . He also admitted to giving them chemotherapy drugs for the purpose of making a profit.

My students included clinicians, hospital executives, and other professionals who were pursuing an MBA with a concentration in healthcare administration. They had spent weeks with me reviewing ethical concepts and codes; and legal theories, cases, regulations, and statutes. In the context of the news item on this doctor, they were versed in the laws of informed consent, common-law battery as applied to health care, statutes proscribing health care and insurance fraud, etc. In the first week of the course, I had also presented a lecture and materials on the historical evolution of medical ethics.

When I presented this case to the class, I was delighted when some of them started the discussion in the 5th century BCE. They reasoned the doctor had only to follow the original Hippocratic Oath, the origin of the trust modern physicians enjoy today, and which introduced the concept of nonmaleficence, one of the four pillars of principlism.

I will follow that system of regimen which, according to my ability and judgment, I consider for the benefit of my patients, and abstain from whatever is deleterious and mischievous. I will give no deadly medicine to any one if asked, nor suggest any such counsel …

It wasn’t a question of informed consent versus paternalism, or of the revenue streams that run through medical practice. If the Michigan doctor had faithfully followed the Hippocratic principles, he would have spared his patients misery, spared him society’s condemnation, and spared harm to society’s trust of physicians.

[The contents of this post are solely the responsibility of the author alone and do not represent the views of the Bioethics Program or Union Graduate College.]

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Protecting Transgender Students

by Sean Philpott-Jones, Director of the Center for Bioethics and Clinical Leadership

Two nights ago, the Shenendehowa Board of Education voted 4 to 2 in favor of a new policy designed to protect the rights and safety of transgender students. High school students in the district will now be allowed to use bathrooms and locker rooms that correspond to their gender identity. The new policy also allows all students, regardless of sex or gender, to access single-user bathrooms and private changing areas.

Located just north of Albany, New York, Shenendehowa Central School District is now one of but a few districts nationwide that provide recognition and support to transgendered youth. Only California has passed a statewide law that allows transgender students to use bathroom and locker facilities that match their gender identities. While the New York City Board of Education released new guidelines in support of transgender students earlier this year – including a recommendation that students never be made to use a locker room or restroom that conflicts with their gender identity – these are only suggestions and not binding policies. Sadly, the New York State Board of Education has been largely silent on this issue.

The US Federal government has also been relatively quiet on the topic of transgendered youth. The US Department of Education’s Office for Civil Rights has stated that Title IX of the Education Amendments of 1972, which protects students from sex discrimination, also applies to transgender students. This allows transgendered students to file legal action in federal court should local authorities fail to protect them from discrimination and violence while at school. But the US Department of Education failed to provide specific examples of Title IX-prohibited discrimination or provide school districts with clear guidance on how to create trans-inclusive policies. Finally, the Obama Administration has been reluctant to push Congress to pass legislation that will protect transgendered youth, such as the Safe Schools Improvement Act and the Student Non-Discrimination Act.

Such laws and policies are desperately needed. Lesbian, gay, bisexual and transgendered (LGBT) youth are at increased risk of bullying, physical violence and sexual assault at school. In 2011, for instance, a survey conducted by the Gay, Lesbian & Straight Education Network (GLSEN) found more than half of LGBT youth report being harassed at school. For transgendered students in particular, however, the problem is much much worse.

The National Transgender Discrimination Survey, a study of over 6,000 people, found that transgender and gender-nonconforming students experienced very high rates of harassment (78 percent), physical violence (35 percent) and sexual assault (12 percent). Alarmingly, a third of this harassment and violence occurred at the hands of teachers, staff and school officials themselves. It should come as no surprise, therefore, that many transgendered students drop out of school. Still more report having suicidal thoughts, and a quarter have attempted to take their own lives.

This is a tragedy of considerable proportion, one that can only be addressed by implementing and enforcing policies that prohibit discrimination on the basis of gender identity. That is what makes the recent vote by the Shenendehowa Board of Education so groundbreaking. But it is also what makes the acrimonious nature of the debate over this policy so disheartening.

When local news stations posted the story on their websites and Facebook pages, for example, a majority of the comments submitted online were in opposition to Shenendehowa’s new policy. Many people posted comments that made it clear that they did not understand the new policy. Others made rude statements that were based on ill-informed stereotypes of transgendered kids: that they are confused, that they need to see psychiatrists, that they should use the staff bathrooms, or that they are sexual predators who are only interested in seeing other children naked.

I’m chalking up most of the opposition to fear, ignorance and campaigns that falsely claim that students and staff will exploit these policies to use opposite-sex restrooms in order to sexually harass and assault other children. When California’s legislature was debating the School Success and Opportunity Act, which gave transgender students the same rights and protections covered by Shenendehowa’s new policy, the conservative Pacific Justice Institute invented a now discredited story about a transgender student harassing her peers in a Colorado school restroom. Similarly, when the town of Fayetteville, Arkansas was considering a law that prohibit discrimination on the basis of gender identity, reality TV star Michelle Duggar falsely claimed that the law would allow men “with past child predator convictions to claim they are female [and] use womens’ and girls’ restrooms, locker rooms and showers.“

Nothing could be further from the truth. Consider what is happening in California. In the year since they passed the School Success and Opportunity Act, not a single school district in that state has reported an instance of inappropriate behavior, harassment or physical assault stemming from the new law. The experience of the Shenendehowa Central School District is likely to be the same.

Kudos to the Shenendehowa Board of Education for standing up for the rights of transgendered kids. Now if the rest of the school districts in the US could do the same.

[This blog entry was originally presented as an oral commentary on Northeast Public Radio on December 4, 2014, and is available on the WAMC website. The contents of this post are solely the responsibility of the author alone and do not represent the views of the Bioethics Program or Union Graduate College.]

Fight or Flight

by Sean Philpott, Acting Director of the Center for Bioethics and Clinical Leadership

I travel a lot for work. It’s the rare week when I’m not on the road or in the air to attend a conference, give a talk at some symposium, or serve on some panel or commission. In fact, if you’re listening to this commentary as it airs on the radio, I am likely on a plane cruising at 32,000 feet somewhere between Albany and Washington, DC. Given this grueling travel schedule, I was less than thrilled to hear that the federal budget sequester would affect air travel across the US.

Part of the Budget Control Act passed in 2011, the sequester mandated $1.2 trillion in across-the-board cuts over the next decade if Congress could not reach agreement on a budget before March 1st. Needless to say, our leaders weren’t up to the task. Despite vocal opposition from Republicans and Democrats alike, what was intended to be a measure of “last resort” to cut federal spending became the law of the land.

The sequester includes $85 billion in spending cuts before the federal fiscal year ends in September, or approximately 5% of the budget of federal agencies like the National Institutes of Health, the Internal Revenue Service, and the Social Security Administration.  The Federal Aviation Administration (FAA), the agency that manages and controls the flow of traffic in the nation’s skies, is slated for over $600 million in sequester-related cuts.

Given that nearly three-quarters of that agency’s budget is spent on salaries for air traffic controllers, air safety inspectors and technicians, FAA officials concluded that the only way to achieve $600 million in cuts was to furlough some air traffic controllers and to close some control towers.

Furloughing controllers and closing some towers, however, also requires that the number of flights also be reduced to a level that could be safely managed by the remaining staff. Flight delays of two or three hours in most major cities were predicted, slowing the flow of commerce and inconveniencing large numbers of travelers.

Apparently, the thought of irate businessmen being inconvenienced by flight delays was enough to get Congress to act. Late last week, both the Senate and House voted to end sequester-imposed furloughs of air traffic controllers. But while we jet setters are cheering, this vote illustrates exactly what is wrong with Washington. Cuts to programs that annoy but don’t really harm affluent Americans spur our leaders to action, but cuts that adversely affect the health and well being of poorer Americans are largely ignored.

For example, the sequester requires Head Start – a federally funded educational, health and nutritional program for disadvantaged children – to slash its operating budget. Studies have shown that children enrolled in Head Start are less likely to need special education services, less likely to repeat grades and more likely to graduate from high school. But this year alone, sequester-related budget cuts have forced Head Start programs around the country to ratchet back on day care and transportation services, reduce the number of meals provided to needy preschoolers, and even cut eligible families from its rolls. An estimated 70,000 fewer children will receive services this year as compared with 2012, further swelling the ranks of America’s underclass.

Meals on Wheels – a network of volunteer programs that provides over one million meals daily to elderly or disabled individuals – faces similar cuts. Over a third of all funding for these programs comes from the federal government via money provided under the Older Americans Act. As a result of sequester-related cuts, some Meals on Wheels programs have been forced to cut the number of meals provided and to start waiting lists for seniors who qualify for assistance.

There are dozens of similar examples of how the sequester affects the lives of the less fortunate: cut in benefits for the long-term unemployed, fewer housing vouchers for low-income families or people with disabilities, reduced access to life saving medications for those living with HIV/AIDS. The list goes on and on.

To put it bluntly, the sequester is bad policy. A game of political chicken gone awry, it has had a negative impact on a variety of largely successful federal programs. So why hasn’t Congress acted until now? Why hasn’t Congress ended the sequester, other than addressing the minor inconvenience of airport delays?

[This blog entry was originally presented as an oral commentary on Northeast Public Radio on May 2, 2013. It is also available on the WAMC website. Its contents are solely the responsibility of the author alone and do not represent the views of the Bioethics Program or Union Graduate College.]

Bright Shiny Things

by Sean Philpott, Acting Director of the Center for Bioethics and Clinical Leadership

On Tuesday, the US Centers for Disease Control and Prevention (CDC) released startling new data on the incidence of attention deficit hyperactivity disorder (ADHD) in American kids. According to the CDC, over 6 million children between the ages of 4 and 17 have been diagnosed with ADHD. Despite coming on the heels of April Fool’s Day, those numbers are no joke.

Over the past ten years, diagnoses have skyrocketed. Eleven percent of all school age children in the US have received an ADHD diagnosis, nearly twice the number seen in 2001. Rates are even higher among older kids, with nearly 20% of high school age boys having a diagnosis. One in ten adolescent boys are currently taking prescription stimulants like Ritalin or Adderall to treat the condition.

The reasons for the startling increase in rates of ADHD among American children are unknown. One possibility is that physicians are becoming more knowledgeable about the condition, enabling them to recognize it in their patients. Perhaps, but one of the problems that doctors face is the lack of clear diagnostic criteria for ADHD.

Like other attention or hyperactivity disorders, ADHD is characterized by a diffuse set of symptoms. According to the current version of the American Psychological Association’s Diagnostic and Statistical Manual of Mental Disorders (DSM-IV), symptoms of ADHD ranging from fidgeting to not listening, to talking excessively, to disliking mentally intensive tasks like schoolwork. But it is rare to find a school age kid in the US who doesn’t have some, if not all, of these symptoms, as so artfully suggested by the satirical cartoon South Park (an episode from season 4 entitled ‘Drug Free Treatment’ for those who are interested). Given the subjective nature of these diagnostic criteria, it is likely that the condition is over-diagnosed.

If I had been born thirty years later, I too would likely have an attention deficit diagnosis. In fifth grade, I was “problem child.” I didn’t pay attention, didn’t complete assignments, didn’t remain in my seat, and didn’t stay quiet in class. The reason was not that I had ADHD. The reason was that I was bored. The material being presented didn’t stimulate me intellectually. Luckily, I had a very astute teacher who recognized this. With my parent’s permission, he started giving me more challenging work to do, and my grades and behavior quickly improved.

Unfortunately, thanks to decades of budget cuts, teachers nowadays do not have the same opportunities to work with struggling students. An educator dealing with a classroom of 40 or more kids, while also being expected to write individualized student learning outcomes (SLOs) and to develop metrics and tools for assessing student achievement, cannot devote the time or effort necessary to figure out why a particular child is failing.

Parents may feel similar pressures. So when a kid is struggling in school or acting out in class or at home, frustrated parents and teachers might automatically label the child as ADHD rather than seek alternative explanations for their behavior.

Given the subjective nature of the symptoms – confirmed primarily by talking with patients, parents and teachers, all of whom have an interest in finding quick and easy answers to complex behavioral problems – it is easy to understand why many doctors feel compelled to prescribe medication. Moreover, some savvy kids may seek diagnosis and treatment on purpose, given that ADHD drugs are now popular as study aids on high school and college campuses.

Therein is one of the biggest problems: over-diagnosis leads to over-medication. This isn’t to say that some kids don’t benefit from treatment with drugs like Adderall or Ritalin. Those with severe attention deficit do benefit from treatment, developing the concentration and impulse control necessary to succeed in school and in the workplace. Untreated ADHD can also lead to problems later in life, including alcohol and drug abuse. But for kids with mild ADHD or who are misdiagnosed, pharmaceutical treatment can come with great cost.

In their advertisements and promotional materials, drug manufacturers tend to overemphasis the benefits of treatment while downplaying the risks. ADHD drugs can improve concentration and impulse control but can also have severe side effects, including anxiety, addiction and psychosis.

The CDC’s shocking statistics should serve as a warning to us all. Not that we are facing an epidemic of attention deficit disorders in the US, but that we are likely facing an epidemic of pathologization. What is normal childhood behavior has become, for harried parents, teachers and physicians, a medical condition to be treated with drugs. Increased public awareness and understanding of attention deficit disorders is a good thing, but we shouldn’t rush to the pharmacy for some Ritalin every time that Johnny fails a test or Sally talks back.

[This blog entry was originally presented as an oral commentary on Northeast Public Radio on April 4, 2013. It is also available on the WAMC website. Its contents are solely the responsibility of the author alone and do not represent the views of the Bioethics Program or Union Graduate College.]