When the President has COVID-19

This fateful year took another sad and surprising turn last week with the announcement that both President Donald Trump and his wife Melania tested positive for COVID-19.   The story became even more serious as we saw him being flown to Walter Reed Medical Center for treatment.  We wish President Trump and the First Lady a speedy and full recovery.

The media, of course, has raised important questions such as “When was he diagnosed?” and “Did he attend a political fundraiser while he was positive?”  Of more immediate interest at the moment is, “How is he doing?”  The president’s personal physician, Dr. Sean Conley, has addressed the media at least twice over the weekend, giving updates that have left many questions remain.

The ethical treatment of any patient includes the patient’s right to have his or her personal health information kept private.  Health care systems do not look kindly upon employees who reveal patient’s personal information to the press.  HIPAA laws are designed to ensure this protection.  The CDC website states it clearly:  “The Health Insurance Portability and Accountability Act of 1996 (HIPAA) is a federal law that required the creation of national standards to protect sensitive patient health information from being disclosed without the patient’s consent or knowledge” 

When your patient is the president of the United States, the rules seem to be different.  For example, over the weekend the Washington Post ran an article on the health of President Franklin Roosevelt as he was seeking his unprecedented fourth term in office.   The Post quotes Jay Winik’s book, 1944:  FDR and the year that changed history, and FDR’s visit with Dr Bruenn at the hospital that would become known as Walter Reed Medical Center:  

“Listening to Roosevelt’s heart and lungs with a stethoscope increased [Dr.] Bruenn’s sense of alarm: as Roosevelt inhaled and exhaled, Bruenn heard rales, telltale rattling or bubbling sounds indicating that fluid was building up inside the president’s lungs . . . Roosevelt was literally starting the slow process of drowning from within.”

What would the public have done if they had known — vote for Republican nominee Governor Tom Dewey?  It is difficult to imagine, but one never knows.  There are other examples from history of the public not knowing the medical condition of the president.  Ethically speaking, what does the public have the right to know, especially in an election year?

Back to the present.  On Saturday, October 3, Dr Conley gave a press conference updating President Trump’s health.  Not much long after, the press received quite a different (and more negative) message, apparently from White House Chief of Staff Mark Meadows.  On Sunday, Dr Conley addressed the discrepancy: “. . .I didn’t want to give any information that would steer the course of the illness in another direction. . .”  It raises the question of how information given at a press conference could possibly steer the course of the illness.  If he meant ‘steer our understanding of the course of the illness,’ he should have worded it that way.  I do not envy Dr Conley’s role.  At some level he is both the president’s physician and the president’s spokesman, with a very powerful audience of one.

Any president’s health will always be a bit of a mystery to the public and I believe that, in principle, the president deserves privacy.  My preference would be that his spokespeople state the facts in the most straightforward way possible.  If that isn’t possible, then perhaps wait until it is.

The NFL is back!

As we observe another Labor Day, our annual transition from the heat of summer to the cool breezes of autumn, it is refreshing to know that the National Football League is planning to start its 2020 season in just a few days.  As you are probably aware, team officials throughout the league have factored COVID-19 into their planning this year and have made adjustments accordingly.  For example, my hometown team, the Miami Dolphins, will be limiting their home attendance to just 13,000 fans per game (which is 20% capacity of their home field, Hard Rock Stadium).  

What caught my interest in the run-up to the new football season was a recent article in The Washington Post describing a former player’s concern about chronic traumatic encephalopathy (CTE), the concussion-related disease that has profoundly affected many players.   

In the past few years, the NFL has acknowledged the negative impact of traumatic head injury associated with football-related concussions and reached a financial settlement with players.  This settlement, according to the Post, “already has awarded nearly $790 million to retirees with cognitive impairment or conditions such as Parkinson’s or Alzheimer’s.”  

The Post reported last week that neurologists are working on experimental scans that would identify the presence of CTE while players are still alive.  It tells the story of Sean Morey who was Pro Bowl player for the Arizona Cardinals: “Morey estimates that he suffered more than 20 concussions over his career, most of them undiagnosed, and countless other blows to the head.  Following the 2009 season, he began having blind spots in his vision and excruciating headaches that would leave him immobilized for hours at a time.”

The tests are still in development and more work must be done, but the goal is a worthy one.  The ability to have a diagnostic test that would clearly show whether or not a player has CTE (or the extent to which they have it) would be a major step forward for the many who wonder if their current mental impairment is a result of their playing days.  Eventually, it could lead to the development of a treatment that could help affected players live happily past their playing days.

Not that long ago, the NFL was in denial about these issues (hence the book, League of Denial by Mark Fainaru-Wada and Steve Fainaru), creating a major ethical (and legal) problem.  I hope as research continues that the league will continue to help those who have helped make football so successful.

The Old Guard

In an effort to disconnect from the craziness of life, I recently watched “The Old Guard,” a popular 2020 Netflix movie.  [Note:  spoiler alerts ahead.]  It tells the story of four “immortals,” led by Andromache of Scythia (also known as “Andy,” portrayed by Charlize Theron), and the ups and downs of their existence.  

As we are introduced to each of the immortals, we find that they were born in different centuries and have been alive for a very long time.  The bulk of their time seems to be participating in battles that have taken place throughout history  (e.g., The Crusades, the Napoleonic era, etc.).  It’s not clear from the movie that they were always immortal, but each one finds out quickly after sustaining a deadly wound and suddenly come back to life.  A fifth immortal, Marine officer Nile Freeman (portrayed by KiKi Layne) is introduced in a graphic scene where her neck is violently slashed and she is basically dead, but remarkably, she heals without explanation and without scars.  Within a few scenes, Andy takes Nile taken from her military camp and has introduced her to the team of immortals.

Obviously, there are some big questions here that we hear the immortals ask throughout the movie:  “Why me, why am I immortal and others are not?”  Or, “What are we supposed to be doing with this ‘immortality’?”   “Are we making any difference in a world that seems like it is getting worse instead of better?”  By the end of the story, the viewer gets an idea about the difference that the immortals have made throughout the years, but the “why” question remains unanswered.  Andy is a confirmed atheist and views Nile’s faith in God as illogical.  

More ethical issues arise when Big Pharma gets involved.   The villain of the movie, Steven Merrick (portrayed by Harry Melling) is the young Zuckerberg-esque head of his own pharmaceutical company.  He enlists help from a former CIA agent, James Copley (portrayed by Chiwetel Ejiofor) to capture the immortals and to run a series of endless tests on them.  As you might expect, the immortals are eventually captured and meet Merrick face to face.  He informs them that it is their duty to submit to his torturous experimentation because in the long run, they will help humanity.  He goes so far as to tell the heroes that it is ethical duty to do this because they could help so many people.

Copley’s ruthlessness clearly tells the viewer that his ethics are problematic.  He is not simply an altruistic scientist, he is an entrepreneur who wants to ensure that the immortals do not fall into the hands of his Big Pharma competitors.  His words about helping humanity ring hollow because of his overall devotion to the bottom line.  Or as he was told at the end of the movie, “It was not your choice to make.”

“The Old Guard” is a cautionary tale cloaked in the garb of a twenty-first century Netflix feature with all the special effects one might hope for.  Humanity never seems to learn their lesson; technology always seems to have a leg up on ethics.  In our fast-paced world, a cautionary tale may be just the thing we need.

Justice & George Floyd

When I blogged last month, I thought surely that May would be an improvement over April. I was wrong. Now, with 100k deaths from COVID-19, and after several days of protests across the country in response to the death of George Floyd, I can’t possibly imagine what the summer will be like.

I watched two different documentaries over the past week – one on the life of writer Mark Twain and one on the life of President Ulysses S Grant. Even though they were two distinct individuals, their attitudes toward the horrific treatment of African Americans in the 19th century seemed remarkably similar, at least compared to the surrounding culture. It was especially disheartening to see how quickly the Reconstruction of post-Civil War America faded back into institutionalized racism. It is even more disheartening to see how race remains an issue in so many areas of contemporary life.

I have blogged on this site before on the racial disparities in health care. COVID-19 has exposed these disparities even further. It no longer surprises me when a family of color rejects talk from medical personnel about end of life care for a loved one as nothing more than a suspicious attempt to be rid of an under-resourced patient. (For more insight into this topic, please see the powerful op-ed by Dr Jessica Zitter in The New York Times last year.)

I am a middle-aged white male, born and educated in the United States.

I have never experienced systemic injustice.

I am not an expert on race relations.

However, it seems to me that many people of faith from my generation are committing the same grievous sin that previous generations have committed: we stand quietly by while watching the power structures of this country – both political and economic – systemically eviscerate the most basic of rights, all the while proclaiming that we believe that humans have been created in the image of God. (Dr John Kilner’s book, Dignity and Destiny: Humanity in the image of God [Eerdmans, 2015] carefully explains both the Bible’s teaching on the image of God, as well as the horrific things that happen when it is ignored.)

Justice is one of the foundational principles of bioethics. It is also one of the foundational principles of both the Hebrew Bible and the New Testament. Justice for George Floyd will not be reached simply by trying those responsible for his death. It will be reached when all humans are treated with dignity and respect.  Until that day, let us faithfully work towards that end.  (For a passionate and theological treatment of this issue, please listen to Rev Dr Charlie Date’s sermon from May 31 [sermon begins at minute 43:17].)

COVID-19 and the Vulnerable

April 2020 is over and not a moment too soon.  As we enter May, it is reported that over 60,000 people in America have died of COVID-19.  There is a measure of relief that some of the most dire predictions of ICU hospitalizations and deaths have not materialized. As many have suggested, a good dose of humility is needed when it comes to predictive models.

Since I last blogged in early March, I have read with great interest some of the many writings about the intersection of COVID-19 and bioethics.  Early on, some wondered how big a threat COVID-19 actually was to people who lived outside of Asia.  That quickly changed into an important discussion about how we should triage patients in case there was not enough ventilators for all who needed one. (See, for example, the discussion at www.cbhd.org).  Others have expressed concerns about how the use of our cell phones as tracking devices to trace COVID-19’s spread might encroach upon our privacy rights.  Still others have noted the racial disparities that have arisen during the pandemic, leading Dr Clyde Yancy of Northwestern University to conclude, “A 6-fold increase in the rate of death for African Americans due to a now ubiquitous virus should be deemed unconscionable.  This is a moment of ethical reckoning.” These and many issues are worth detailed consideration. 

Currently, some are focused on the ethics of reopening the economy. See, for example, the paper recently posted by The Hastings Center on this topic. The issue is not whether businesses should open, but how and when they should.  Of course, as you might suspect, there are multiple factors to consider, including the possible return of COVID-19 if social distancing rules are not observed.  But others argue that extensive damage has already been done to the economy and that it is worth the risk to reopen things again. 

In the midst of all this, it is important to consider the toll that this has taken upon those who are among the vulnerable.  Recently, in its series “Voices from the Pandemic,” The Washington Post published the comments of Gloria Jackson, a 75-year old resident of Minnesota. Her statement is heart-wrenching in many ways, because she gives a voice to some of the unspoken fears of many elderly citizens. These words in particular stood out to me:  

“I spent my career working for the federal government at Veterans Affairs. I raised my kids by myself . . . I pay taxes and fly a flag outside my house because I’m a patriot, no matter how far America falls. But now in the eyes of some people, all I am to this country is a liability? I’m expendable? I’m holding us back?”

I appreciate Ms. Jackson’s forthrightness.  Bioethics needs to speak directly to these fears in order to remind her (and others like her) that she is a valued member of society. Even if her health should fail, she will be treated with compassion.  No one is expendable.

COVID-19 has shone a bright light on the needs of the most vulnerable of our society. We overlook them at our peril.

The Price We Pay

Every week, I visit my local grocery store.  Thanks to the miracle of texting, I have a pretty good idea what of my family needs for the coming week.  Each week, our supermarket offers BOGOs (“buy one, get one”) for different products.  With this in mind, I will consciously switch brands to get a “two for one” deal.  When I check out, I make sure to see how much money I saved – sometimes it is as much as ten percent of my total bill.

Imagine how silly that seems when compared to process of paying for surprise medical expenses.  It is now a common occurrence to make use of the local urgent care center or emergency room, pay the co-pay, and then be hit by a sizable bill in the mail a few weeks later.  Saving a few dollars on an extra loaf of bread hardly seems worthwhile anymore.

How many other things are as truly surprising as surprise medical bills?  And what would we have done differently if we had known that we were going to get one and how much it would be.  (Yes, I understand that we sign a piece of paper that says we may receive bills from outside-the-network providers.  But how many of us are in the position of saying, “Thanks for letting me know. I will be leaving now without treatment”? It’s not exactly like putting a loaf of bread back on the shelf.)

Dr Marty Makary of Johns Hopkins University has written a book addressing the costs of health care entitled, The Price We Pay:  What Broke American Health Care – and How to Fix It  (Bloomsbury, 2019).  In it, he tells his story of travelling throughout the country, dealing with health care systems who send their patients into bankruptcy, and other tales of unscrupulous behavior.  Dr Makary is a very good story-teller.  More than once I thought to myself that I would want him to help me with any billing issues I might have with an unsympathetic health care system.

The chief villain of The Price We Pay is the ‘middle-man,’ the institution (usually a step removed from physicians, nurses, etc.) which raises the cost of health care simply because it can.  Makary calls out in particular some Group Purchasing Organizations (GPOs) and some Pharmacy Benefit Managers (PBMs) who, he believes, unnecessarily raise the price of health care.  By singling out some places where one might find savings in medical billing systems, Makary contributes to the ongoing discussion of the cost of health care.  Whether or not his suggestions will fix the entire system is another question.  I am reasonably sure that it will not persuade those who are currently advocating “Medicare for all.”

Some might wonder if the cost of health care is an ethical issue at all or if it is a diversion from other, more important matters.  I contend that it is, because it affects the way we approach an illness and its possible treatments.  To surprise one with an outrageous bill after the fact hardly seems ethical.  If a medical event leaves one bankrupt, can it really be said that system has done no harm?  Makary concludes with a well-stated challenge to those in the medical field:  “As witnesses to birth, sickness, and death, we know that all humans are created equal and deserve to be treated with fairness and dignity.”

On Justice & Healthcare

At a bioethics conference two years ago, I heard the Surgeon General of the state of Florida say that one’s zip code was a more accurate determinant of one’s health than one’s DNA.  It took a while for that statement to sink in, but when it finally did, it was nothing short of shocking. Her comment significantly raised my awareness of some of the disparities in our healthcare system.

I was reminded of this experience when reading a recent editorial by Dr. Audiey C. Kao, editor-in-chief of the AMA Journal of Ethics, entitled, “Motivating Health Equity”. He addresses the issue of justice in healthcare by starting with an account of an interaction he had with a man sitting on a park bench with a sign asking for money.vvKao then cites a study of his city (Chicago) that compared two neighborhoods, one primarily black and the other primarily white, finding that they “had a life expectancy gap of 30 years.”  “This,” he concludes, “is a justice problem and cannot be fixed without tackling social, political, and economic root causes that advantage some of us and disadvantage some of us.”

As the 2020 election cycle is now in full swing and candidates are once again addressing the healthcare concerns of the electorate, there will undoubtedly be much talk about justice.  What does a more just healthcare system look like? Despite the promises of the candidates, it seems that the divisiveness of the current political climate does not give great hope that a solution for these concerns is easily within reach.

I think it would be a mistake, however, simply to give up on justice.  The divide between the “haves” and the “have nots” is too great to completely ignore it.  I appreciate Kao’s affirmation of the Journal’s commitment “to catalyzing greater appreciation for and understanding of health equity and to motivating ‘assurance of the conditions for optimal health of all people.”  

Kao gives us a good reminder to examine our first principles and to consider those who have been overlooked by our current system.

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.