Wir wussten nicht

By Mark McQuain

It has been said that “the only thing necessary for the triumph of evil is that good men do nothing.” Implied in this statement is that, first and foremost, the good men and women must be aware of the evil before they could be held morally obligated to act against that evil. There are subsequent issues associated with that obligation, such as does one even have the ability to act and, if so, how much personal harm or risk must one endure before being morally absolved of the responsibility to act. Regardless, knowledge of the evil is a requirement before moral culpability to act against that evil can be expected or assigned.

Therefore, a claim of “we did not know” would certainly absolve people of any moral responsibility from failing to act. But only if that denial is true. Challenging the validity of such a denial is reasonable because the denial is the easiest way to escape moral culpability. Consider the following two examples where claims of “not knowing” were possibly used to avoid moral responsibility.

When the Dachau concentration camp was liberated by the U.S. Seventh Army at the end of World War II, it was reported that the local German townspeople denied that they knew what was going on at the camp, claiming “Wir wussten nicht” – “We did not know”. General Walton Walker started the practice of bringing local townspeople to view such camps by ordering the Mayor of the town of Ohrdruf and his wife to visit the Ohrdruf labor camp. After the visit, it was reported the Mayor and his wife returned home and killed themselves.

Did they really not know?

Recently, the movie “Gosnell: The Trial of America’s Biggest Serial Killer” was released with minimal coverage by Hollywood or mass media. Reportedly, the producers had to resort to crowdfunding to initially get the project off the ground. Kermit Gosnell was a physician in Philadelphia who operated the Women’s Medical Society Clinic where he performed late term abortions. He and his clinic had multiple complaints and legal actions related to unsafe office practices as well as several procedure-related deaths prior to eventually being raided on unrelated drug dispensing charges. What the investigating officials found upon raiding the facility would fairly be described as a “House of Horror” for the unsanitary conditions, use of untrained staff, expired medications and multiple fetal remains randomly strewn around the clinic. Dr. Gosnell was convicted of first degree murder in the deaths of three infants, involuntary manslaughter on one female patient and 21 felony counts of performing illegal late-term abortions. During the trial, state and city regulators were repeatedly called out for their failure to act sooner, given the high volume of prior allegations and complaints.

Did they really not know?

Wir wissen nicht. (We do not know.) And, perhaps, we will never know.

Bioethics & “Three Identical Strangers”

By Neil Skjoldal

I recently had the opportunity to watch the 2018 documentary Three Identical Strangers, which tells the story of triplets Bobby Shafran, Eddy Galland, and David Kellman.  They were separated shortly after birth in the 1960s and adopted by three different families through the Louise Wise adoption agency in New York City.  The way they happen to find out about each other in 1980 is fascinating.  It created a media sensation at the time, including an appearance on The Phil Donahue Show.

The documentary starts by sharing their thrill of discovery, which included the many similarities that the brothers have, even though they spent the first 19 years of life apart.  However, it eventually moves to some of the larger and darker questions that lingered for each of the adoptive families—the biggest of which was, “Why weren’t we told that there were siblings?”  And as you might suspect, the agency representatives did not provide many helpful answers.  The parents’ feelings of anger and bewilderment resonated with me as an adoptive parent.

Eventually the brothers came to find out that they were part of a “twins study” conducted by noted psychologist, Peter Neubauer.   The study involved the brothers being interviewed and filmed individually every year through the first few years of their lives, with them not knowing that their brothers even existed.  Their parents were told it was a study of adopted children, not a study of twins.

The documentary leaves little doubt where it stands on the ethics of this matter.  From some of those interviewed, it appears that the purpose of the study was to address the classic “nature vs. nurture” question.  However, the harm done to these brothers (and the others who were unknowingly involved in the study), making them feel like ‘lab rats,’ undermines any positive value that the study may have had.  That Neubauer’s research remains sealed at Yale until 2066 adds fuel to the fire that something unethical was done.

In a blog post on www.psychologytoday.com, Dr. Leon Hoffmann asks whether it is reasonable to expect researchers of previous generations to follow our contemporary standards.  He asserts that both the original researchers and the producers of the documentary are guilty of self-deception.  This is a point worth considering as we look back; however, this case is from the 1960s and those impacted are still very much alive.

It is difficult for me to disagree with the assessment of reviewer Neta Alexander of www.haaretz.com:  “’Three Identical Strangers’ is thus a faithful representation of the spirit of the times. It’s about the way in which the authorities and those with power – headed by a charismatic and respected psychologist – abuse their powers in the name of science.”  Three Identical Strangers stands as a timely reminder that there should be safeguards and limits to research.

Abortion by mail

By Steve Phillips

A recent article on the CNN website reports on a European organization called Aid Access which has recently made the medicines used for medical abortion available to women in the US by mail. The organization utilizes telemedicine in the form of online consultations to prescribe the abortion drugs from a pharmacy in India to be mailed to the woman desiring an abortion in the US. It is clear that this violates FDA regulations. To ensure the safe use of mifepristone the FDA currently requires that the drug, which has no medical indication other than induction of abortion, is only available to be dispensed in clinics, medical offices and hospitals, by or under the supervision of a certified prescriber. At issue is whether those restrictions should be lifted to allow more open prescribing of mifepristone.

The appropriate reason for the FDA to have additional restrictions on certain drugs is safety. Those who advocate lifting the restrictions on mifepristone argue that the safety of this drug has been established and cite FDA statistics that the risk of death from using the drug to induce medical abortion is only one in 155,000. This makes its use much safer than either surgical abortion or continuing a pregnancy to term. Those who oppose lifting the restrictions counter with concerns that the unsupervised use of the drug may also lead to failure to diagnose ectopic pregnancy and can result in situations that require surgical intervention, which may have increased risk in an unsupervised patient.

While there are risks to the use of mifepristone, it is hard to make the case that the risk of harm to the mother is high enough to warrant the additional restrictions that currently are required for this drug. That makes it hard to justify limiting access due to true concern about the risk to the woman whom uses it. This is not the case for another regulation regarding abortion. Laws that require abortion clinics to meet the same standards as outpatient surgery centers have a clear justification. Surgical abortion has similar risks to other outpatient surgeries, so it is reasonable to require the same safety measures for an abortion clinic and an outpatient surgery center.

There is one risk related to the use of mifepristone, which is not usually discussed, which does support the additional restrictions on its distribution, but in a somewhat perverse way. That will be the focus of my next post.

Where do I Store the Name of your Dog?

Following a long office day of wrestling with my current nemesis, our office electronic medical record (EMR), I was pleased to read a lovely article by Dr. Taimur Safder in the current NEJM entitled “The Name of the Dog”. I’ll not summarize it as the link is free and the article is short and makes the point of today’s blog wonderfully.

I realize the EMR is not actually alive and, lacking agency, is unable to act as my archenemy and cause my downfall, or that of my patients. Further, I have a degree in electrical engineering so the technology of the EMR is not the issue either. I will grant that current and future data mining of the EMR may benefit untold numbers of patients. I will also concede that EMRs will (eventually) be bolstered with AI tools that will improve diagnostic accuracy and reduce or eliminate costly unnecessary testing.

My concern is that the EMR causes me to focus so much on the data collection that I spend less time getting to know my data source (my patient) as more than the sum total of discrete data points. There really isn’t any good place in the EMR to put the name of my patient’s dog. If I am going to treat my patient as more than a something, perhaps as a someone, then more than just reductionistic data acquisition and processing will have to take place.

With that in mind, please take a moment to view one of my favorite paintings by Sir Luke Fildes at the Tate Gallery called “The Doctor”. The painting depicts a country doctor sitting at the bedside of a young patient, with the child’s parents in the background. One can imagine the concern of the child’s father and almost feel the anguished prayers of the child’s mother, but both are interestingly relegated to background positions in the painting. The focus of the painting is the focus of the lamp in the painting – the country doctor and his patient.

Medicine in the 19th Century was limited in terms of meaningful data collection and limited further by actual effective treatments. In other words, the EMR of the 19th Century could have been completed in mere minutes and the diagnosis and treatment, such as it was, rendered in a few minutes more.

Given those limitations, perhaps not surprisingly, one gets the sense that the depicted outcome was far from certain and also that the country doctor had been in the home a while – there was at least time for tea at the table. What on earth was he still doing there? Maybe in absence of a definitive diagnosis and immediate cure, what the doctor could provide was his time, his empathy and his focused, loving concern. One gets the sense he would likely remain with his patient and the family as long as he was needed to offer what help and hope he could.

That seems like a reasonable example of how one imago Dei might care for another.

Would that I could consistently convey that level of steadfastness, that empathy and that loving concern to all of my patients without frantically looking for that special place in my EMR to store the name of your dog.

Starting with moral conclusions vs. foundational principles

By Steve Phillips

Last week I wrote about how Jeremy Williams’ moral position on sex-selection abortion was influenced by his position on abortion itself. Reflecting a little more on what he wrote raises the question of what comes first in our reasoning about a moral issue. Do we start with fundamental principles or with previously held moral conclusions? It is not a simple question.

Abortion is such a significant issue that it tends to dominate bioethics at times. Ethicists who defended the permissibility of a woman choosing abortion in the 1970s seemed to begin with the idea that abortion was permissible and then work back to reasons to support that position. Those reasons included an analogy of a violinist being attached to a person without her permission and the idea that some human beings were not actually persons. However, this process of starting with a conclusion is not exclusive to those who support abortion. Many of my students begin with a strongly ingrained belief that abortion is wrong without a good understand of why they believe that. They then address other issues according to how that would affect their belief that abortion is wrong.

My first reaction is that proper moral reasoning should begin with foundational moral principles, but those who take the casuist approach to ethics say that rigidly following principles can lead us astray. They say we should we should begin with a paradigm case in which the moral conclusion is clear and then determine how much the situation we are considering is like and unlike the paradigm case. Even Beauchamp and Childress who have helped to define the principles of biomedical ethics say that those principles are in a significant way influenced by our considered moral judgments and not just based on ethical theories.

So why do I think we should start with foundational principles? That goes back to why I think there is such a thing as moral right and wrong. I believe that morality itself exists because we were created by and live in a world created by a moral being who is by nature good. God’s innate goodness causes ethics to exist. If we were the result of chance and unguided evolution, we would have no reason to believe that such things as right and wrong exist. If ethics exists due to the moral character of God, then God’s moral qualities are the foundation of ethics. His expression of those qualities in scripture and through his incarnate Son form the foundational principles for ethics. That is where we need to start.

Is More “Ruining” of Medicine on the Way?

By Mark McQuain

Ask older medical doctors their opinion on the current state of the practice of medicine and I suspect the majority will give you an earful, generally along the lines of “How [blank] has ruined the practice of medicine”, filing in [blank] with any number of things, including the government, insurance companies, pharmaceutical companies or doctors themselves. “Ruined” is a strong claim and even if true, I certainly don’t know how to assign blame as there is probably plenty to go around. Regardless, new initiatives by any one of these groups warrants watching. So, a recent September 20 NEJM editorial about a proposed change in reimbursement by the Centers for Medicare and Medicaid Services (CMS) made me wonder if more “ruining” is on the way.

The NEJM article nicely summarizes the current state of affairs (additional summary for those without subscription below):

“Medicare pays for office visits using five levels of codes based on clinical complexity, medical decision-making complexity, and time. For visits with established patients, physicians are currently paid $22, $45, $74, $109, and $148 for levels 1, 2, 3, 4, and 5 visits, respectively; for new patients, they receive $45, $76, $110, $167, and $172. This pricing structure in the Medicare Physician Fee Schedule, established by Congress in 1989, is the basis for physician payment by both public and private payers.”

CMS is proposing to collapse levels 2-5 reimbursements into a single payment of $93 for established patients and $135 for new patients. Documentation requirements would also be reduced to level 2 requirements thus arguably reducing some of administrative bureaucracy physicians say interferes with patient care, allowing them to spend more of this freed-up-time with patients. As an “older medical doctor”, I am certainly happy to reduce my administrative burdens so this sounds good. What could possibly go wrong with: “CMS is from the government and they are here to help”?

The authors of the NEJM article applaud CMS for their efforts to reduce administrative burden but then go on to list some potential unintended consequences. The biggest is that physicians lose the financial incentive to care for more complex patients. They hypothesize that this could result in some physicians reducing office visit times and bringing patients back more frequently, thus fragmenting the care of more complex problems and patients. They also worry that this payment policy will further maintain disparities between physicians who spend practice time on so-called cognitive evaluation and management issues versus time on the portions of their practice that receive reimbursement from procedures, imaging or laboratory fees. Lastly, if private payers don’t follow suit, the authors point out that physicians may shift further away from providing care for Medicare and Medicaid patients in favor of private insurance that does reimburse better for the complex problems.

Reimbursement is only one factor affecting today’s practice of medicine though certainly one that cannot be ignored. Many Christian physicians consider their practice of medicine as more of a calling than simply their occupation. I pray that external factors be kept from “ruining” that calling.

The Sad Case of Daniel Te’o-Nesheim

BY NEIL SKJOLDAL

The New York Times  recently published a lengthy article on Daniel Te’o-Nesheim, a former NFL player who died at age 30 after playing football for half his life.

With all the recent information about the dangers of football-related head trauma, it is not surprising to learn that upon his death, Te’o-Nesheim’s family donated his brain to the Boston University CTE center, where it was found to have chronic traumatic encephalopathy.  The Times article states that Te’o-Nesheim had suffered approximately 100 concussions.  His is another tragic story of someone who dies much too early, in part because CTE drove him to erratic behavior.

The Times article also details Te’o-Nesheim’s other football related injuries. According to his attorney, Sam Katz, an orthopedist told him that “he had one of the worst cases of degenerative arthritis in his ankles that he had ever seen.  He also found damaged knees and shoulders, pinched nerves in his neck, and a tendon tear in his biceps.”

What is particularly troubling about this situation is that a day after his death, the NFL denied his earlier claim for “line of duty” benefits, where his attorney had listed all of his ailments and injuries from playing football.  According to The Times, his claims were denied because“his injuries were not severe and numerous enough.”  His family contested the denial, and months later they were finally awarded $17,500 posthumously.

While denying people benefits the first time around might seem to be best practices within a ‘for-profit’ business model, it hardly seems like it addresses the much more important issue of promoting the health and wellness of the patient.  This seems especially true in this case, as a former employee who used the means available to him to ask for assistance for injuries that obviously were a result from his employment within the NFL.

It is cases like Te’o-Nesheim’s that makes me think that bioethics should speak clearly not only to those who provide frontline care, but also to the business side of the equation.

A Huge Step Closer to Fully-Artificial Human Reproduction

by Jon Holmlund

Last week, the Washington Post reported that scientists in Japan have created human egg cells—oocytes—in the laboratory from reprogrammed blood “adult” stem cells. This work has been published in the journal Science (open access to the abstract only; subscription or purchase required for the full scientific article; WaPo has a limit on free articles before subscribing).

This is large. And, I think, troubling.

The skinny: research on human embryonic stem cells is, in my view and many others, ethically unacceptable because human embryos have to be destroyed to obtain them, and because the earliest cells are capable of maturing into full human beings (babies) under the right circumstances, meaning that said earliest cells are tiny human beings. But about 10 years ago, “reprogrammed” stem cells were produced in the laboratory by taking adult cells and treating them so that they take on a primitive state. In that state, they aren’t capable of forming an entire human but they can be induced to become almost any cell in the body. This gives them tremendous potential for research and possibly treating human disease—much of that potential essentially ethical if proper research ethics are observed.

However, commentators wiser and more knowledgeable than I have said in the past that, in principle, these “reprogrammed” cells, also called induced pluripotent stem cells, could be made into human germ cells—sperm or eggs. To my knowledge, that had not been done before now. Now it’s closer to being reality. The Japanese scientists created early egg cells, too immature to be fertilized, but that is the next project. Add to that the possibility of “reprogrammed” sperm.

This raises the possibility of in vitro fertilization of one of these “reprogrammed” eggs to create a full embryo which, as in current IVF, could be implanted into a woman to impregnate her and, ultimately, bring a baby to birth. Treatment for infertility? Sure. Need to harvest eggs from a would-be mother or an egg donor? Not necessary, in principle. Would the baby turn out OK? Not known—after all, these are not “natural” egg cells we’re talking about.

The development raises at least the issues previously raised by human cloning. Heretofore, cloning would proceed usually by taking an adult cell’s nucleus, inserting it into an egg cell that had its nucleus removed, and treating the resulting new “egg” to develop, not an easy task and one on which progress has been limited. Now, the “artificial egg” would be fertilized to create a new human—at least one step less removed from natural reproduction, on its face anyway.

If fully implemented, it would complete the move to babies-without-sex. Wesley Smith sees “mass human cloning.” That’s only the half of it. The WaPo article also pointed out these possibilities: babies from cheek smears; babies created from a person’s cells without that person’s awareness or consent; more routine screening for genetic disease; IVF becoming the norm. Add to that the notion that full-on IVF could some day be possible, with cells maintained in the lab as raw materials to be “reprogrammed” to sperm and eggs, eliminating the need for identified moms and dads.

This is all a ways off yet, but that’s how all these humanity-altering changes start. Smith is right, that for this and other technologies (heritable human gene editing, animal-human hybrids, totally artificial life forms like “SHEEFs”), a massive public discussion is needed. Where I think he errs is in looking to government to do it. This will have to be grass roots. And making that happen will be a new career for somebody, and a tough way to make a living. But the train has left the station and is gaining momentum.

https://www.nationalreview.com/corner/human-cloning-technology-debate-policy-consensus-needed/

Noninvasive prenatal testing and sex-selection abortion

By Steve Phillips

The National Health Service in Great Britain has decided to implement the use of noninvasive prenatal testing (NIPT) and that has raised some concerns. It would seem natural for there to be concern about this test used to detect prenatal genetic conditions such as Down syndrome, which commonly leads to the choice to abort the fetuses with those conditions. However, according to a recent article in The Conversation by Jeremy Williams one of the major concerns is the use of this technique to facilitate sex-selection abortion. Williams states that one of the major political parties has proposed a policy of banning the use of NIPT for sex determination and has described sex-selective abortion as “incredibly unethical”.

Williams concedes that the idea that sex-selection abortion is morally wrong and ought to be prevented is widely held even by those who otherwise have no moral objection to abortion but suggests that taking that position is problematic for those who believe that a woman has a right to choose to have an abortion. Williams lists several reason that people give for why the sex-selection abortion is wrong. These include idea that sex selection abortions are done due to a trivial preference, concern that sex selection abortion constitutes unjust discrimination against female fetuses, concern about women being coerced into this type of abortion, and that it teaches that the lives of girls are not as important as boys. He is concerned that if these reasons are accepted they would apply more broadly than to just this one type of abortion, and he is right. Many abortions are done for reasons that seem trivial compared to the value of the life of the fetus. Any abortion that is done because of the characteristics of the fetus, including having a genetic disorder such as Down syndrome, are both unjust discrimination against those who have such a disorder and express a message that people who have such a disorder do not have the same value as those who do not. Many women are pressured into having abortions, and do not actually freely choose them.

The problem with what Williams has written is that sex-selection abortion is just clearly wrong. It is wrong to kill a fetus because that fetus is female and end the life of the girl and woman who that fetus would have become just because she is female. That is a clear violation of women’s rights. The fact that this helps us see that abortions in other situations are also clear violations of more universal human rights should make people question whether those abortions are also wrong. It does not mean that sex selection abortion is permissible.

Avoiding advanced dementia, part 2

By Steve Phillips

Last week I wrote about one of my moral concerns regarding Norman Cantor’s proposal to avoid advanced dementia, which he views as being intolerably degrading, by using an advance directive stating that when he reached a certain level of dementia he no longer wanted to eat or drink so that his death would result. My concern with this was that the person caring for him would have to concur with him that his life at that time was no longer worth living in order to justify following his directive and cease to feed him and give him fluids to drink. An independent assessment that another person’s life is not worth living is required of any physician or other caregiver who participates in euthanasia or assisted suicide. Such a determination that another person’s life is not worth living is something that we should never do and the need for that determination is a fundamental reason why euthanasia is not permissible.

Dena Davis in her article “Avoiding Dementia, Causing Moral Distress” agrees with Cantor that a person ought to be able to use an advance directive to end his own life to avoid advanced dementia, but sees a flaw in Cantor’s plan. She writes, “As long as the demented person is enjoying her diminished life, it will be psychologically and emotionally difficult, perhaps impossible, for most people to withhold food or even simple medical interventions. Even if they believe they ought to comply with the advance directive, the moral distress is simply too great.” She concludes that since a person cannot rely on others to follow an advance directive like Cantor’s, the only way to avoid advanced dementia is preemptive suicide. The article “A Debate over ‘Rational Suicide’” in the New York Times describes 80-year-old Robert Shoots doing just that.

My second concern is that it is wrong for us to choose to end our own life by rational suicide even if no one else participates in that act. Autonomy and personal liberty are important, but there are some things that can be wrong to do even to ourselves. This is easier to see from a Christian perspective. Christians understand that our lives belong to God and we do not have the authority to end our lives. That authority belongs to God alone. We have been commanded not to kill any innocent human being because we have all been made in the image of God. That includes a command not to end our own lives.

It can be harder for someone who does not understand that his life belongs to God and has value because he has been made in God’s image to see why rational suicide would be wrong. However, all of us are relational beings. We are connected to our families and the rest of humanity. What we do to ourselves impacts others. Those who contemplate rational suicide to avoid things such as advanced dementia forget how their deaths impact others. They have a desire to avoid a part of life they do not want to live and may want to relieve those who love them from the burden of caring for them but caring for those we love when they become dependent is an opportunity for us to be more fully human. Caring for a loved one with dementia is very hard but is one of the ultimate expressions of human love. We should not take that away from those who love us.