By Neil Skjoldal
What rights do parents have when it comes to the medical care of their children?
This bioethical question has recently arisen in the case of Noah McAdams, a 3-year-old who has been diagnosed with acute lymphoblastic leukemia. According to news reports, the recommended treatment in his case is chemotherapy. His parents decided that they did not want to pursue that course of treatment and took the child out of state for a different course of treatment. Noah’s mother, Taylor Bland-Ball, posted on social media that they were planning on treating him with “rosemary, vitamin B complex, herbal extract, colloidal silver and mushroom tea, among others,” according to the Tampa Bay Times. In that article, Dr. Bijal D. Shahof Moffitt Cancer Center states,”I put it in the same box as those who fear vaccination . . . The reality is, what we risk by not taking chemotherapy, just as what we risk by not taking vaccines, is much, much worse.”
State officials tracked down the parents in Kentucky and took Noah from them and placed him in the custody of his grandparents. According to reports, a district judge would be making a ruling on the treatment issue.
Bioethics wrestles with the relationship of an individual’s (or parents’) rights to the larger concerns of the state. In an effort to denounce the state’s activity, some have called its actions “medical kidnapping.” What role does the ethical principle of autonomy play in this case, even when the treatment is said to have a 90% success rate? In some cases, (e.g., blood transfusions) the state steps in to authorize medical care that is deemed absolutely necessary. Does this case meet that standard? Not all the facts have been made known yet, but the judge will surely need wisdom in order to reach a just conclusion.
By Neil Skjoldal
Many of us have witnessed the giving of bad news to a patient. It is never a pleasant experience. Unfortunately, some medical professionals are simply not skilled enough to share bad news in a way that is both compassionate and comprehensible. And even if they are, it is still bad news after all.
Recently, the media reported the story of a patient and family in California who received bad news via “a robot.” On its face, that doesn’t sound like a very good idea. If you take a minute to watch the clip from CNN’s website, you can see a doctor speaking to a patient through a video device, so it wasn’t exactly a robot delivering the news. It’s a short clip, so it is difficult to reach a conclusion on the nature of the encounter, but it is clearly bad news for the patient. The media reported that the family was upset, the HLN news anchor called it “callous,” and those of us who work with patients on a daily basis see another setback in patient relations.
In an important reaction to this story, ICU physician Dr Joel Zivot notes several salient points:
“This is not a failure of technology, it seems. More likely, it was a failure to communicate via anymethod. Medical schools are bad at teaching how to deliver bad news. Patients often don’t know how to receive it, either. A doctor-patient relationship of trust can successfully occur over the phone and be bungled completely in a fac-to-face encounter. We do not know the mind of the doctor, of what came before, or the mental state of the patient or his granddaughter. Absent that, this story tells us nothing about whether remote technology should be used to deliver this sort of news.”
More training is needed for these important conversations. There are multiple resources available for those willing to learn, including the SPIKES framework, noted by Craig Klugmanin a recent blog. Above all, we must continue to respect the humanity of each patient. As Zivot concludes, “Technology is the helper to the physician but not presently the replacement. If we allow the technology to strip away our common humanity, we will all be diminished as a consequence.”
By Neil Skjoldal
In a provocative article entitled, “China Uses DNA to Track its People, With the Help of American Expertise,” The New York Times tells the story of how the Chinese government is using DNA information in part to make the Uyghurs, “a predominantly Muslim ethnic group, more subservient to the Communist Party.”
To accomplish this task, The Times states that the Chinese government used technology made by Thermo Fisher and “genetic material from people around the world” provided by Dr. Kenneth Kidd, a Yale University geneticist. Apparently, the assumption was that the Chinese would follow the ethical norms followed around the world. Ethicist Dr. Arthur Caplan is quoted in the piece: “Honestly, there’s been a kind of naiveté on the part of American scientists presuming that other people will follow the same rules and standards wherever they come from.” Recently, under heightened scrutiny, Thermo Fisher stopped its sales of genetic sequencing equipment in Xinjiang.
The abuse of technology for autocratic purposes was strongly condemned by Senator Marco Rubio of Florida: “The use of this technology allows the Chinese government to commit truly egregious invasions of privacy and other human rights abuses, including the internment of over a million ethnic Uyghurs and other Muslim minorities. The sale of DNA sequencers to agents of Chinese state security should never have been approved in the first place and I believe the Commerce Department needs to establish clearer licensing requirements on technology and other items used by the Chinese government to censor, detain, and surveil.”
The ability to do DNA research is an incredible scientific and technological achievement. But this case raises a question that must be answered, specifically, What is the ethical responsibility of the corporate world with regard to the abuse of the technology? If they naively continue to follow these practices in similar cases, we must ask who will defend the voiceless against governments that want to make them “more compliant.”
By Neil Skjoldal
Last week, The Washington Post published a summary of a recent article in the Journal of Pediatric Psychology entitled “Gender Bias in Pediatric Pain Assessment.”
The participants of the study were shown a video with a child described as a girl or boy enduring pain. The authors “then asked adults to rate how much pain the child experienced and displayed, how typical the child was in these respects, and how much they agreed with explicit gender stereotypes concerning pain response in boys versus girls.” The study found that “the ‘boy’ was rated as experiencing more pain than the ‘girl’ despite identical clinical circumstances and identical pain behavior across conditions.”
Isaac Stanley-Becker, the author of The Post’s article, noted that the authors of this study were surprised that “the downgrading of female pain was driven by female participants, who were more likely than men to say that the pain of the subject was less severe when told she was a girl.” Stanley-Becker further notes that these results are similar to an earlier study with female nursing and psychology students as participants, suggesting that there is “crossover to the health-care profession.”
It might be difficult for some to imagine anyone purposefully reacting to children’s pain in this way. However, in treating patients in a manner which honors their dignity as humans, it is good to be aware of any possible biases that may exist. It appears that future research will continue to examine these matters.
Most of us probably know that Facebook keeps track of its users. Its programmers have created algorithms that can guess our preferences in all sorts of areas, even in politics. Most of us probably also know that Facebook has come under scrutiny for its actions (or non-actions) during the previous election cycle. Its founder, Mark Zuckerberg, has made appearances before Congress in order to try to explain his company’s behavior. At first he denied there was any problem, and then as evidence mounted, he began to acknowledge that Facebook should have done better in exercising oversight.
Recently, both The New York Times and The Washington Post have reported on Facebook’s approach to mental health, specifically as it relates to its users’ potential risk of committing suicide. Facebook programmers have created algorithms that have been used to monitor its users for potential suicide risks. In some situations, they have called authorities in order to address users whose online postings made them seem like they were in immediate danger.
Understandably, Facebook has resisted regulation. With a motto like “Move fast and break things,” it is easy to comprehend why it would not want any regulatory activity at all. However, mental health is a serious matter and the suicide rate in the United States is alarmingly high. This seems to be qualitatively different than Facebook knowing what kind of vacations I prefer or what kind of automobile I drive.
In his Washington Post op-ed, attorney Mason Marks writes:” Facebook is losing the trust of consumers and governments around the world, and if it mismanages suicide predictions, that trend could spiral out of control. Perhaps its predictions are accurate and effective. In that case, it has no reason to hide the algorithms from the medical community, which is also working hard to accurately predict suicide. Yes, the companies have a financial interest in protecting their intellectual property. But in a case as sensitive as suicide prediction, protecting your IP should not outweigh the public good that could be gained through transparency.”
There are several ethical issues at play here. Do Facebook users have any idea of what the company is doing with their information? Can a non-medical company be involved in the “practice of medicine” (Marks’ term) without any meaningful regulation? What should Facebook be allowed to do with the very personal mental health information that it gathers from its users?
Every generation wrestles with doing ethics in light of rapidly developing technology. In 2019 that conversation continues at even a quicker speed.
By Neil Skjoldal
With the death of President George H. W. Bush this past weekend, the country seems united in eulogizing him for, among other things, having lived “a well-lived life,” because amidst his accomplishments, he was able to reach 94 years of age. This brought to mind a recent article published in The NY Times, “How Long Can People Live?” In it, health writer Nicholas Bakalar observes, “There is considerable dispute, however, over how long humans might live under optimal circumstances.”
The brief article discusses the possibility of drug therapies designed to kill old cells, while leaving young cells in place. Apparently many are working on research projects to see what may be possible. Even the well-known drug metformin will be tested to see its effectiveness against age-related diseases. Bakalar is not overly optimistic. He clearly states, “No serious scientist believes in immortality.” Rather the goal is to assure a “healthier old age than ever before.”
I find Bakalar to be reasonable in his assessment. Of course, one can question whether trying to extend life past 100 years is the best use of limited resources when there are so many other health issues with which to contend. However, perhaps a ‘healthier old age’ could reduce some of those very high medical costs at the end of life which seem to plague our health care system.
I do not anticipate that I will be jumping out of an airplane at an advanced age like President Bush, but I am interested to see if any of the health issues related to old age can be addressed in a meaningful way.
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.
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.
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.
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.