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.