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.

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.

Every Day is a Gift

By Neil Skjoldal

Into the genre of news reports about physician assisted suicide comes a powerful piece from The Washington Post.   It is the story of J. J. Hanson who was diagnosed with a glioblastoma multiforme.  It traces his difficult journey as it relates to PAS.  Because of the poor prognosis, treatments at times seemed too difficult.  His wife Kristen reported that “he told her that if he had had the lethal dose of medication on his bedside during his darkest of days, he might have used it and then missed out on three more years with his family.”  Her hopes now, since her husband’s death last year, are that lawmakers will “work to improve hospice and palliative care for patients” and “to encourage terminally ill patients to have hope and families to enjoy every moment they have together.”

I am aware that a story such as the Hanson’s will not convince those who are strongly committed to PAS. The argument would be something like, “That’s ok for him.  He died his way, just give me the freedom to die in my way.”  But, at the very least, this story provides a counter-narrative to some PAS advocates, who almost by default go to “I know a person who died very poorly and I want to stop that by helping them end their suffering.”

My observation in talking to people about this subject is that their greatest fear is dying with horrible suffering. Almost everyone can re-tell the story of a friend or loved one that died in this way.  For those of us who think that PAS creates many more ethical problems than it solves, our focus needs to be, as Kristen Hanson suggests, to continue to improve hospice and palliative care.  I am grateful for her courage in telling her story and am reminded that every moment of life should be precious to us.

Goodbye, Korematsu

BY NEIL SKJOLDAL

Supreme Court watchers always eagerly anticipate the last week of June because that is when the highest court in the land usually reaches decisions in its most controversial cases.  Last week did not disappoint — several of the decisions were reached by the slimmest of majorities (the infamous 5-4 vote). Then, to add to the excitement, one of the longest serving justices, Anthony Kennedy, announced his retirement, giving the talking heads of cable news seemingly endless fodder for roundtable discussions.

In the midst of the frenzy, a few observers noted the words of Chief Justice John Roberts at the end of his Trump v. Hawaii opinion.  The dissent in the case brought up Korematsu, the decision from the 1940s which concluded that the internment of American citizens of Japanese descent was constitutional.  Roberts disagreed with the dissent, but offered this assessment of Korematsu:

“The dissent’s reference to Korematsu, however, affords this Court the opportunity to make express what is al­ready obvious: Korematsu was gravely wrong the day it was decided, has been overruled in the court of history, and—to be clear—‘has no place in law under the Constitu­tion.’ 323 U. S., at 248 (Jackson, J., dissenting).”

Bioethics should affirm the basic dignity of all humanity.  It reacts strongly to governments using people for experimentation against their will, or to the preferential treatment of one people group over another, or any number of other abuses that have arisen over the years.  Those from the Judeo-Christian perspective often link this to the biblical teaching of the image of God (see the powerful book by John Kilner, Dignity and Destiny).  From my perspective, it means hearing the voice of those who do not normally have a voice and affirming the rights of those whom society so casually overlooks.

Looking back seventy-plus years, Chief Justice Roberts sees the issues of Korematsu clearly.  Sadly, for the many American citizens of Japanese descent interred during the Second World War, there were only three Supreme Court justices who stood with them against such horrific treatment.   Korematsu is a sobering reminder of what can happen when the powerful trample the powerless.  During this Fourth of July week, I will celebrate that this decision has been placed in its rightful place, the ash heap of history.

 

 

 

Physician Assisted Suicide, Again

Last month, I sat through a presentation on the ethics of Physician Assisted Suicide (PAS) in a local hospital.  I attended the presentation, not because I am unfamiliar with the arguments on the subject and ambivalent about my feelings on it, but because I wanted to observe how it was presented, what the reaction of the audience was to the presentation, and how it might affect my work as a hospital chaplain.

For some context, the state where I reside, Florida, does not have a PAS law on the books, nor, according to the “Death with Dignity” website, is it even considering one.

I found the presentation to be disappointing, in part because the participants talked past each other as if they were on a cable news program, repeating the typical talking points that have become so common over the years.  It was also disappointing because it used the classic example of a sad, horrible death story to advocate the use of PAS with the highly manipulative question, “You wouldn’t want your loved one to experience this, would you?”  No one ever seems to respond that we cannot build a law out of such experiences because hard cases make bad law, nor does anyone ever take the time to wonder what else could have been done to make the suffering patient more comfortable.  It simply is an elevation of human autonomy to a staggering height.

At the end of the presentation, the PAS advocate asked for a show of hands on people’s support/non-support of PAS.  I didn’t have the heart to count the hands, but the speakers said it was about 65%-35% in favor of PAS.  My worst fears had been confirmed.  After what I witnessed in that presentation, I have no doubt that we are headed full-speed ahead towards a civilization that will in some way systematically encourage its elderly, its weak, its sick, and its disabled citizens to make a “compassionate choice” and choose “death with dignity.”  Those of us who think otherwise are firmly entrenched in the minority.

I understand that I am not the first person to have had this experience, and in some ways I have anticipated this day for some time, but because I saw it so close to home, it still was somewhat shocking to me.   When filling out the seminar evaluation, I found the question, “How will apply what you have learned today to your current practice?”  I’m not sure what the reviewers thought, but my response was simple: “I will continue to advocate strongly against PAS, affirming God’s gift of life whenever and wherever I can.”

My Day at the Florida Bioethics Network Conference–2018

For the past several years, it has been my privilege to attend the annual conference of the Florida Bioethics Network.  As in prior years, this year’s conference showed the great range of topics that fall under the umbrella of bioethics.   Topics included the so-called “Tattoo DNR,” a discussion of medical marijuana, the potential promise of an electronic and interactive informed consent document, and even a discussion of the role of clergy on ethics committees.  Each of these topics could merit a blog post, but the one that grabbed my attention the most was the discussion of “Public Health” by Celeste Philip, Florida’s Surgeon General and Jeffrey Brosco, the Deputy Secretary of Children’s Medical Services for the Florida Department of Health.

In an increasingly divided country, the concept of public health seems more remote than ever before, yet the presenters made it clear that it is a goal worth pursuing.  After all, “Your zip code is a better predictor of your health than your genetic code,” they argued.  With the prevalence of the 23 & Me-style genetic testing, their statement took me by surprise. After giving it some thought, their point was clear.  Addressing public health is an important function of government, they stated, and if the disparities between zip codes continue to grow, our health care system will be facing even more serious challenges than ever imagined. They claimed that the greater the inequality there is in income in a community, the greater the mortality – for everyone.

Both Drs. Philip and Brosco used the ethical concept of justice (which they used alongside “accessibility”) to underscore their case for a robust public health system.  Understanding that there is an ongoing tension between community protection and individual autonomy, they made a case that “Public health ethics requires both identifying the values that underlie policy as well as optimizing the language we use to convey available options.” (If you haven’t seen this already, in 2010 The Robert Wood Johnson Foundation published an article entitled, “A New Way to Talk about the Social Determinants of Health.”

I found the presentation to be both thoughtful and thought-provoking, going beyond many of the typical bioethics conversations that I encounter on a day-to-day basis. Those committed to a Christian worldview would do well to engage in this discussion.

 

 

The Child I Want

I appreciate the honesty of Washington Post columnist Ruth Marcus. Watching various states attempt to enact more and more restrictions on abortion, she wrote of her strong personal feelings regarding the importance of keeping abortion legal.

The headline certainly grabs our attention: “I would’ve aborted a fetus with Down syndrome. Women need that right.” Noting how cute the new “Gerber Baby” is, Marcus reminds her readers that abortion is a choice, and that her choice would be to abort a 2nd trimester pregnancy, if it were determined that the child had Down syndrome. After acknowledging that parents have the right not to abort, she states, “That was not the child I wanted.”

At the end of the article, Marcus seems to back away from the implications of her beliefs. What if, instead of Down syndrome, the child was to have nearsightedness or was destined to be short instead of tall? “There are creepy, eugenic aspects of the new technology that call for vigorous public debate. But in the end, the Constitution mandates — and a proper understanding of the rights of the individual against those of the state underscores — that these excruciating choices be left to individual women, not to government officials who believe they know best.”

Clearly, Marcus does not really want debate. She wants the child she wants.

More thought has got to be given to these matters. Within a week’s time, another Washington Post columnist, George Will, wrote a strong response. Instead of emphasizing the importance of personal choice, he cites a chilling statistic. Only three children with Down syndrome were born in Iceland in 2009, because of the nation’s strong emphasis on pre-natal testing and equally strong push to terminate unwanted pregnancies.

In describing an improved life for a Down syndrome person, Will notes that just a few decades ago, they “. . . were institutionalized or otherwise isolated, denied education and other stimulation, and generally not treated as people.” And here lies the issue which confronts us all: when we decide who to treat as people, we dehumanize all.

 

Parkland & Bioethics

I have lived in South Florida over 20 years now, and I do not remember anything grabbing and holding our community’s consciousness more than the February 14 shooting at the Stoneman Douglas High School in Parkland, Florida (in Broward County).  In its aftermath, the more we hear about the events of that day, the more alarming it becomes.  This is the sort of tragedy that haunts children in profound ways.  I have had conversations with my two teenage daughters about the relative safety of their schools, and what would happen if the formerly unthinkable occurred.

It’s hard to keep track of all the news coverage.  Certainly, there are many on all sides of the gun issue that engage in sensationalism and scare tactics.  Sadly, the voice of the so-called “reasonable middle” often is silenced by the loud voices on the fringes.  I sincerely, but mistakenly, thought that after the horrific shooting at Newtown, Connecticut in 2012 (with the deaths of 20 first graders and 6 adults) leaders would take meaningful action.

Is gun violence a bioethics issue? A research letter published in JAMA in early 2017 says as much.  After citing several powerful statistics, the authors write: “Compared with other leading causes of death, gun violence was associated with less funding and fewer publications than predicted based on mortality rate.”  The debate is over the impact of the Dickey Amendment, passed in 1996, which states that “none of the funds made available for injury prevention and control at the Centers for Disease Control and Prevention [CDC] may be used to advocate or promote gun control.”

Some Republicans in Congress say that the CDC is allowed to do research into gun violence even under the Dickey Amendment, but the evidence presented by Stark and Shah suggests that it is not being done.   Other Republicans have stated that the Dickey Amendment should be revisited. According to www.thehill.com, Rep. Bob Goodlatte from Virginia said that it would be appropriate for lawmakers to review the policy. He is quoted as saying, “I don’t think it’s inappropriate — particularly if the original author of that says it should be examined — to take a look at it . . . to see if there is a way to do that, to promote the cause, the core pursuit of the Centers for Disease Control, which is to prevent disease, not to address issues related to things that happen because someone has a disease like mental illness.”

Clearly, the subject of guns is controversial. Would CDC research into gun violence help affirm human dignity? Or, would the research be too politically biased to be of any value?   Might there be some valuable data gathered that could help address this most tragic of issues? This is a conversation worth having.

 

They didn’t choose brain damage

As we say goodbye to another NFL season, the inevitable stories about the devastating effects of CTE appear, showing the devastation that America’s favorite sport takes on its players. In a recent New York Times opinion piece, Emily Kelly, wife of former NFL player Rob Kelly, tells the story of her husband’s struggles since his retirement.

What makes Kelly’s story interesting is that it addresses the primary issue that NFL-defenders raise: the players knew the risks. She writes: “Professional football is a brutal sport, he knew that. But he loved it anyway. And he accepted the risks of bruises and broken bones. What he didn’t know was that along with a battered body can come a battered mind.”

The good news is that after years and years of denial, the NFL has begun to recognize its role in the health of the players affected by multiple brain traumas. Even better news for Emily Kelly is that she is not alone. That is, she has found a supportive group of other ex-players’ wives with whom to share her family’s struggles. One cannot underestimate the importance of emotional support, because feelings of isolation and shame are powerful chains that keep people from sharing their stories and getting needed help.

Kelly feels that the public still does not know the widespread impact of brain damage on football players and hopes that her story, as well as the stories of others, will help shed light on the issue. “These men chose football, but they didn’t choose brain damage.”  Slowly but surely, the public will become aware, and hopefully, the NFL will respond appropriately.

 

 

 

 

 

The DNR Tattoo

National media outlets have reported the fascinating account of the unconscious 70-year old brought into the Jackson Hospital (Miami) emergency room with a “Do Not Resuscitate” tattoo on his chest.

In correspondence to the New England Journal of Medicine, doctors involved in the case explain the process by which the medical team used to evaluate the case. At first, the team did not plan to honor the tattoo, but an ethics consultation “suggested that it was most reasonable to infer that the tattoo expressed an authentic preference . . . and that the law is sometimes not nimble enough to support patient-centered care and respect for patients’ best interests.” One wonders what facts were used to shed light on the accuracy of the tattoo, especially in view of another case, cited in the NEJM correspondence (“DNR tattoos: a cautionary tale”), when a DNR tattoo did not convey the wishes of the patient.

The accounts of this most recent case end on a positive note: “Subsequently, the social work department obtained a copy of his Florida Department of Health “out-of-hospital” DNR order, which was consistent with the tattoo . . . We were relieved to find his written DNR request…” I was happy to read this too, as tattoos are not necessarily the best way to communicate end of life issues.

Those who work with people thinking about advance directives know that what seems clear one day, could easily be less clear the next. Some patients change their mind on code status frequently, especially as they develop breathing problems and the like. It is, of course, their right to do so. Simply put, it would be hard to rescind (or even modify) a tattoo.

Those of us involved in chaplaincy speak of patients as being “living documents.” I am relatively sure this is not what is meant.