TADA & Tinslee Lewis

In recent days, the Texas Advance Directive Act (TADA), signed into law in 1999 by then-Governor George W. Bush, has come under scrutiny because of the tragic case of Tinslee Lewis.

From press accounts  we learn that Tinslee is now 11 months old and suffers from several conditions which have led doctors at Cook Children’s Medical Center to conclude that any further treatment would only be harmful to her, adding to her already painful existence.   One of her doctors has said, “She is in pain. Changing a diaper causes pain. Suctioning her breathing tube causes pain. Being on the ventilator causes pain.”  TADA allows the hospital to stop such treatment after ten days if the patient’s doctors and the hospital’s ethics committee conclude there is nothing more that can be done and no other facility is able to take the patient.

Because Tinslee’s mother objects to the hospital’s conclusion, the case is now working its way through the court system. Last week a District Judge decided in favor of the hospital, but the next day the Second Court of Appeals in Fort Worth ordered a stay.

Observing the legal back and forth, the Washington Post points out, “In Tinslee’s case, however, anti-abortion groups are divided.  While Texas Right to Life took Lewis’s side, the Texas Alliance for Life and the Texans for Life Coalition have said they agree with the doctors.”  In a statement issued last week on the judge’s ruling supporting the use of TADA, the Texas Alliance for Life commented: “We don’t see how she could have ruled any other way.  As we have stated previously, Texas Alliance for Life supports TADA.  It is good public policy, it is constitutional, and it provides a balance between the patient’s autonomy and the physicians conscience protection rights to do no harm.”  

At the time of writing this post, there doesn’t seem to be a solution that will please all involved. Thus, we don’t hastily run to judgment here.  We acknowledge the hospital’s consideration of the futility issue (especially as it seeks to ‘do no harm’) as well as the pain of a family that wants to extend the life of their beloved child.  I would simply add that in all such cases, the human side of the equation needs to be considered.

Project Nightingale

Technology always seems to outrun ethics.  But just because something can be done does not mean that it should be done.  Usually this discussion is focused on the latest life-sustaining medical device, but with emergence of electronic medical records, a whole new set of problems have appeared

Last month, Rob Copeland of The Wall Street Journal (behind pay wall) published a report focusing on the partnership between Google and Ascension health subtitled:  “Search giant is amassing health records from Ascension facilities in 21 states; patients not yet informed.”  Google has named their efforts “Project Nightingale.”

The idea behind medical records being available on the cloud (or somewhere electronically) sounds very appealing at first.  However, it is not difficult to imagine “Project Nightingale” turning into “Project Nightmare” when it comes to patient’s privacy.  This was what drove a Google whistleblower to come forward: “why was the information being handed over in a form that had not been ‘de-identified’ – the term the industry uses for removing all personal details so that a patient’s medical record could not be directly linked back to them?  And why had no patients and doctors been told what was happening?”

Dr. David Feinberg, the head of Google Health, addresses the concerns that have been raised: “Google has spent two decades on similar problems for consumers, building products such as Search, Translate and Gmail, and we believe we can adapt our technology to help. That’s why we’re building an intelligent suite of tools to help doctors, nurses, and other providers take better care of patients, leveraging our expertise in organizing information.”  (I’m not sure using Google Translate as a positive example will bring comfort to many readers.) Feinberg also discusses the precautions that Google has put into place.

Since the original WSJ broke last month, Congress has gotten involved.  Consumer Affairs reports “that the U.S. Department of Health and Human Services has opened an inquiry into the project to determine whether it violates the Health Insurance Portability and Accountability Act of 1996 (known as HIPAA).”

Maintaining patients’ privacy is an important issue and must not be glibly overlooked.  It will no longer suffice simply to say that we trust Google (or Facebook, etc.) to do the right thing.

Racial Bias in Algorithms?

Can algorithms show racial bias?   That is the conclusion of a recent article published in Science by Obermeyer, et al., entitled, “Dissecting racial bias in an algorithm used to manage the health of populations.”  

According to Science, the algorithm’s goal is “to predict complex health needs for the purpose of targeting an intervention that manages those needs.”  Fair enough.  That certainly sounds like a worthy goal, especially in these days of complex medical conditions, with equally complex treatments.  However, the problem raised by the research done by Obermeyer, et al., is that “the algorithm predicts health care costs rather than illness, but unequal access to care means that we spend less money caring for Black patients than for White patients.  Thus, despite health care cost appearing to be an effective proxy for health by some measures of predictive accuracy, large racial biases arise.”   The study concluded that with a reduction of bias in the algorithm, a much larger percentage of Black patients would receive the advanced interventions that the health care system offers.

In addition, the Minneapolis Star-Tribune reports that “New York regulators are calling on Minnetonka-based UnitedHealth Group to either stop using or show there’s no problem with a company-made algorithm that researchers say exhibited significant racial bias in a study.”

In its note on the research, Nature  states that Optum (the algorithm’s developer) raised questions about the study’s conclusions:  “The cost model is just one of many data elements intended to be used to select patients for clinical engagement programs, including, most importantly, the doctor’s expertise.”  Nature also reports that “Obermeyer is working with the firm without salary to improve the algorithm.”

The results of this study deserve to be examined closely.  If we truly want to affirm the dignity of each individual, bioethics must address these areas of disparity whenever possible.  It’s not likely that we will ever achieve a bias-free world, but it is surely helpful to be made aware of our biases so that we can better serve those in need.

Medicare Fraud — Again

Today’s Miami Herald [limited access] is reporting that there are on-going scams targeting the elderly by doing unnecessary DNA tests on them, with the intent of committing Medicare fraud. The article states, “Genetic testing . . . has become so corrupted by racketeers that the Justice Department recently unveiled its first nationwide take-down of 35 suspects accused of fraudulently billing $2.1 billion to Medicare.”

The article outlines the case of Richard Garipoli, of Loxahatchee, Florida (located in Palm Beach County).  He is the owner of Lotus Health, a telemedicine company.  According to the report, he is “currently charged with defrauding Medicare and receiving kickbacks while collaborating with labs that billed more than $326 million for Cancer Genomic tests, known as CGx tests.  The Medicare program paid more than $84 million to the labs, located in Georgia and Pennsylvania, which in turn paid kickbacks to Garipoli and other unnamed co-conspirators between January 2017 and September 2019 . . .”

This report is another reminder that the seemingly endless attempts to bring down health care costs in this country (especially as we approach another election season) will not be successful unless such large-scale fraud is stopped.  Additionally, it continues to be troubling that these types of scams single out the elderly.  Targeting those among the most vulnerable, in an effort to defraud the government, is a violation of the most basic principles of bioethics.  It is now in the government’s interest not only to recoup these funds, but to take measures to reassure our elderly citizens that they can expect to be safe from scams in their twilight years.

A meaningful life

The MIT Technology Review recently published an interview with Ezekiel Emanuel, chair of the University of Pennsylvania’s department of medical ethics and health policy, entitled “A doctor and medical ethicist argues life after 75 is not worth living.”  It appears to be a follow-up to a provocative article that Emanuel wrote in The Atlantic five years ago, “Why I Hope to Die at 75” (Emanuel makes clear in the interview that he did not choose that title.)

After stating that he is not advocating euthanasia, Emanuel makes some thought-provoking points in the interview.  For example, he observes that we don’t spend enough money on children: “one of the statistics I like to point out is if you look at the federal budget, $7 goes to people over 65 for every dollar for people under 18.”  To truly affect impactful change, it seems wise to focus on the health of children.

Emanuel also challenges the idea that a longer life span means a healthier life: “We’re having more disabilities.  We have people with more problems.  And even more important, for most people, is the biological decline in cognitive function.” For Emanuel, cognitive decline calls into question any advances made in average life span.  Apparently, 70 is not the new 50.

When asked about the ‘iconic innovators in Silicon Valley—people like Peter Thiel and Larry Ellison,’ Emanuel does not pull his punches: “. . . [T]hey’re fascinated with life extension [in general]? Naw, they’re fascinated by their life extension. They find it hard to even contemplate the idea that they are going to die and the world is going to be fine without them.”  Though somewhat pointed, Emanuel’s comments underscore some of the issues with individuals pursuing ‘immortality.’  Is it really for the betterment of society or an unhealthy preoccupation with self? 

To me, Emanuel’s most troubling remarks come when he addresses the issue of people who are active well into their 80s: “…when I look at what those people ‘do’, almost all of it is what I classify as play.  It’s not meaningful work.  They’re riding motorcycles; they’re hiking.  Which can all have value—don’t get me wrong.  But if it’s the main thing in your life?  Ummm, that’s probably not a meaningful life.”

Emanuel’s wish to die in his mid-70s reflects his interpretation of what a meaningful life is.  For him, meaning consists in doing research, publishing findings, and contributing to the academic community and by extension, the public life.  Even the thought of mentoring young people, though important, doesn’t appear to hold Emanuel’s interest for long.  

What constitutes a meaningful life?  While meaning is a very personal question, I would like to affirm the important role that the elderly play in our community.  Perhaps their ‘productivity’ is not the same as it used to be, and their health is in decline, but those are not adequate measures of meaning.  It seems to me that those who are well along life’s journey have much to share with their children and friends about living. There is meaning beyond this, of course, but at the very least it is a move away from the “be productive or die” perspective.

My hope is that society’s definition of meaning will eventually expand and more fully include people of all ages.

Jeffrey Epstein & Transhumanism

In November 2018, journalist Julie Brown of the Miami Herald published an important three-part report called “Perversion of Justice,” describing the case of billionaire Jeffrey Epstein.  Brown’s reporting strongly indicates that Epstein’s punishment appeared relatively small when compared to the crimes that were actually committed.  The report, in part, led to further examination of the case and a recent indictment by the Southern District of New York.  Eventually the Secretary of Labor, Alex Acosta, resigned his cabinet position over questions about his role as a prosecutor in the case a decade earlier.

If the account of the crimes isn’t horrific enough, the New York Times reported last week that Epstein used his wealth to speak to prominent scientists about his goal to spread his DNA world-wide through impregnating groups of women at his New Mexico ranch.  In what reads like a creepy sci-fi novel, the articlereports: “Mr. Epstein’s vision reflected his longstanding fascination with what has become known as transhumanism: the science of improving the human population through technologies like genetic engineering and artificial intelligence.  Critics have likened transhumanism to a modern-day version of eugenics, the discredited field of improving the human race through controlled breeding.”

Epstein used his wealth and influence to ingratiate himself to the scientific community, according to the Times.  Prominent attorney Alan Dershowitz is quoted in the article: “Everyone speculated about whether these scientists were more interested in his views or more interested in his money.” Not surprisingly, several of the scientists contacted by the Times had a less than positive view of Epstein’s scientific musings.

One of the appeals of transhumanism is its goal to make humanity better through technology.  Living easily past 100 without all of the ailments of old age seems like a worthy goal. However, as is often the case, technology runs ahead of morality.  In Jeffrey Epstein’s case, it contradicts our understanding of basic human rights to think that the future belongs solely to amoral billionaires and the scientists they enlist in their causes.

Fertility Fraud

By Neil Skjoldal

Last week, Canadian fertility specialist Dr. Norman Barwin lost his medical license after complaints that he had used his own sperm to artificially inseminate his patients without permission. Bionews.org reports that there were understandably strong reactions from the families affected by his horrific actions.  And now it has come to light that he had done this at least 11 other times.

This case brought to mind a case that came to prominence last year.  Dr. Donald Cline, an Indiana fertility specialist, used his sperm to artificially inseminate his patients and is said now to have more than 50 biological children.  Apparently, up until recently, there were no laws stating that it was illegal for a physician to do so. In light of the Cline scandal, Indiana passed a fertility fraud law which singles out fertility doctors who use their own sperm.  Theindychannel reports:  “The law, which takes effect July 1, makes it a level 6 felony if someone makes a misrepresentation involving a medical procedure, medical device or drug and human reproductive material.”  

It is truly sad that it takes a law to ensure that doctors will not artificially inseminate patients without their consent.  However, I am glad that Indiana did so.  (California has a more general law). If individuals are unable to regulate their behavior based on their own personal morality and ethics, it becomes incumbent upon society to investigate the matter to determine whether a law is needed or not.  This is what happened in this case.

Bonnie Steinbock takes an interesting perspective on the Cline case.  While acknowledging that the doctor was unethical, Steinbock questions whether or not the children born from this unethical behavior were actually harmed by him:  “What makes the lawsuits of the children Cline sired problematic is the fact that, but for Cline’s use of his own sperm, none of these children would have existed.”  She concludes, “If there are to be any medical malpractice suits against Cline, these should be limited to the parents, not the children.”

These unethical acts demand our attention. What can be done to stop them? And what of those who were victimized by this behavior? At the very least, they deserve answers. I hope that Indiana’s law might make a difference. Hopefully other states are taking notice.

Bad News

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.”

The Abuse of DNA Technology

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.”

Gender & Pain

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.