A contemporary reprise of theories of justice

This blog’s being sponsored by an evangelical Christian university means, among other things, that at least some contributors, notably the current writer, tend to adopt a set of basic Christian assumptions (monotheism, tenets of historic Christianity, biblicism) in approaching matters of bioethics, including justice.  In that light, a recent summary of a Christian framework for justice, by the Presbyterian pastor Timothy Keller, is worth a careful read.  It is a concise and erudite summary of the different secular approaches to justice in pluralistic American society, contrasting them with a Christian approach.  (It does not attempt to address frameworks specifically grounded in other religious traditions.)

Drawing on the teachings of the Bible, especially the example of Old Testament Israel as embodying universal, enduring principles of justice intended by God, Keller characterizes biblical justice as encompassing concern for community that entails a moral imperative to generosity; equity in treatment of all human beings; corporate responsibility, meaning that sometimes, people bear responsibility for sins of others; but also individual responsibility, meaning “I am finally responsible for my sins, but not all my outcomes”; and an imperative to advocate for poor and marginalized people.  Of these, the contours of corporate vs individual responsibility will certainly spark debate among Christians, but living out these principals is, Keller argues, the responsibility of the Church in a secular world.

The big contrast is with atheistic, secular approaches to justice, which must and do fail because they neglect, avoid, or despise appreciation for human teleology—what are people for, what is their purpose?  Keller invokes Alastair MacIntyre’s Whose Justice?  Which Rationality? and, with MacIntyre, takes the position that “behind every understanding of justice is a set of philosophical beliefs about (a) human nature and purpose (b) morality, and (c) practical rationality—how we know things and justify true beliefs.”  Disagreement about these, particularly about human nature and purpose, leaves the prospect for secular agreement about justice well-nigh hopeless.  The rationality of the Enlightenment failed in this regard, and the popular current secular default that morality springs from common sense begs the question, assuming a common moral intuition that need not and does not pertain.

The current American secular landscape is dominated by four theories, which lie, progressively, on a spectrum of sorts, from individualist to collectivist, in order:

  • libertarianism, the position that justice is the maximization of individual freedom, which fails to appreciate the importance of community and the depths to which sin distorts human affairs, and which is too grounded in individual self-interest;
  • modern liberalism, which focuses on fairness, most recently following John Rawls’s A Theory of Justice, and emphasizes rights or entitlements, often to be guaranteed by the state.  It fails for reasons that have been well-rehearsed many times elsewhere: an enthronement of individual autonomy, a lack of a standard for adjudicating conflicting rights-claims, and an unwarranted faith in reason (notably in cost-benefit analyses), attempting to exclude religious values, but, in America at least, assuming Judaeo-Christian principals and values to support fairness judgments;
  • utilitarianism—justice is what produces the greatest good for the greatest number—which, for all its usefulness in individual judgments, fails as an overarching approach for many well-known reasons, including incommensurability of goods, potential to embrace mistreatment of minorities, insufficient criteria for what is “good” in the first place, and over-reliance on the language of “harm” to ground judgments;
  • postmodernism, the notion that “a just society subverts the power of dominant groups in favor of the oppressed.”  This may be the loudest current voice, and it draws the lion’s share of Keller’s attention.  This approach, Marxist in its foundations, starts from the presupposition that human affairs are the product of impersonal social or historical forces—the old “scientific theory of history.”  Keller provides an excellent, quick digest and explanation of what the current radicals, articulating Critical Theory (or Critical Race Theory when applied to racial relations), are talking about when they invoke “dominant discourses,” “intersectionality,” and “checking one’s privilege.”

Let us be clear—Critical Theory is rubbish, and Keller hits it hard.  Among its defects: deep incoherence—if everyone is blinded by their circumstances, so are the Critical Theorists; it reduces humans to automatons and fails to account for universal sin, moral agency, and the union of soul and body (I suppose if you deny that people have souls, and think they are just bodies, you just might be a  Marxist materialist); it denies human sinfulness and common humanity and makes forgiveness and reconciliation impossible; it invites extreme self-righteousness on the part of its adherents; and it sets the stage for oppression under the disguise of opposing oppression.  (Memo to the young: we just spent a century battling the various demons of totalitarianism, and you get to decide what you think of the second coming of Mao.  Study well.  Read attentively.  Choose carefully.)

Read the whole thing.

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.

Human Fetal Tissue — Considerations

The NIH Human Fetal Tissue Research Ethics Advisory Board met on 31 July 2020 to “make recommendations regarding the ethics of research involving human fetal tissue (HFT) proposed in NIH grant and cooperative agreement applications and R&D contract proposals, as set forth in the NIH Guide Notice NOT-OD-19-128.” The meeting agenda included a brief time set aside for public comment. Additionally, written comment could be submitted within a prescribed time frame prior to the meeting.

It is my hope that the advisory board seriously considered the following comment penned by this writer, on behalf of the educational non-profit Tennessee Center for Bioethics & Culture:

All human beings belong to one another.  Whatever our genetic constitution, our ethnicity, our color, our femaleness or maleness, our geographic location, or stage of life:  we are part of the human family.   That membership is not bounded by a cradle-to-grave timeline.  As human mammals, our beginnings begin before the exodus from our mothers’ wombs.  From the fertilization of the egg by the sperm, a new human being arises (and sometimes, multiples).  How we treat that human zygote, embryo, fetus, newborn, baby, toddler, preschooler, child, adolescent, adult, and elder, has effects on that human being – as well as on ourselves.  How we treat other human beings, especially vulnerable ones, tells future generations and civilizations about what kind of people we are.

In 1993, President Bill Clinton signed into law the NIH Revitalization Act.  That Act charged the NIH to conduct or support research that reduced the number of animals used in research, and that produced less pain and distress in those animals (https://grants.nih.gov/grants/olaw/pl103-43.pdf). Those are laudable goals.  That same 1993 NIH Revitalization Act authorized the use of human fetuses for research, including fetuses from induced abortion (www.hhs.gov/ohrp/regulations-and-policy/guidance/public-law-103-43/index.html).  The same law that sought to reduce pain and suffering in animals opened the door wider to using nascent human beings as research subjects.  Utilizing tissue that becomes available by virtue of spontaneous abortion (miscarriage) does not actively convert living beings into research subjects/objects.  It is not a planned procedure that can be scheduled around tissue procurement firms.  That is not the case, however, with the use of fetal tissue from induced abortion.  The willful taking of tiny, live human beings from their mothers’ wombs, followed by the use of them in whole or in part, as research subjects/objects, sets up a human market.  Abortionists and abortion facilities are paid to render a living being into products or parts.  Then they are paid again to yield up these beings or parts to research.  Money is exchanged for parts or labor, even if said payment is labeled “handling charges.” This is a market, and it is a market in human flesh:  a stain upon our culture and our civilization.

Abortion, Res judicata, Stare decisis and the “Rightness of Things”

Oddly, I enjoy reading Supreme Court decisions, particularly the dissents, even though I am not a lawyer. I gain similar enjoyment watching a good game of chess even though I am not a great chess player. Nerd that I am, I think I become smarter for the effort in both cases. I beg the reader’s indulgence on the legal background before getting to the ethical or theological portion of this blog entry but, after all, the case regards abortion, which usually demands a legal “walk in the weeds”.

Three weeks ago, the New York Times reported on a recent Supreme Court decision (June Medical Services, LLC et al v. Russo) that struck down a Louisiana law that attempted to place restrictions upon physicians who perform abortions by requiring them to have admitting privileges at nearby hospitals in case there were complications. In overturning the law, Judge Breyer, writing for the 5-4 majority opinion, made the case that requiring physicians to have said admitting privileges would reduce the number of physicians performing abortions in Louisiana, creating a burden on access to abortion. He was able to cite precedent with an almost identical Texas law that was struck down by the Court in 2016 (Whole Woman’s Health v. Hellerstedt)

There are many legal and ethical rabbit holes to explore in both cases. For the sake of brevity, I have picked one. Chief Justice Roberts was the fifth and deciding vote for the majority in the present case. What makes this interesting is that he joined the dissent in the earlier Texas decision, a decision he admits that he remains convinced was decided incorrectly, but voted recently with the majority to use the precedent of that prior case to strike down the Louisiana law. He wrote a separate concurring opinion to explain himself. In it, he begins:

“I joined the dissent in Whole Woman’s Health and continue to believe that the case was wrongly decided. The question today however is not whether Whole Woman’s Health was right or wrong, but whether to adhere to it in deciding the present case.”

My translation of this is: “Our first decision was terrible but instead of fixing our error, we should make a second terrible decision based upon the first – that way, at least we are consistent.”

And, legally, consistent they are.

Roberts’ problem with the Supreme Court’s Texas decision rested not with the specific medical or ethical questions as to whether physicians performing abortions should have admitting privileges at local hospitals or whether such requirement truly placed a limiting burden on women seeking abortion but rather the legal technicality of whether or not those questions had been previously and properly adjudicated. Res judicata (claim preclusion) prevents cases from being (potentially repeatedly) re-adjudicated between the same parties. Roberts joined Alito’s dissent, arguing the Texas case was an example of res judicata and should never have been heard. In Alito’s words: “The Court favor[ed the] petitioners with a victory that they did not have the audacity to seek”

With the Texas decision now law, Robert’s recent decision was to give precedent to that previous decision. Stare decisis (“to stand by things decided”) allows us to rely that courts will not change laws erratically. Robert’s sixteen page separate concurring opinion decided the Court’s 5-4 recent decision and was his attempt to justify giving precedent to a previous case he still believes was wrongly decided. Justices Thomas, Alito, Gorsuch and Kavanaugh each wrote dissents effectively having none of his argument.

All this brings me to the bioethics portion of this blog entry regarding this case. If Supreme Court decisions are not concerned with determining right and wrong (per Roberts), then what are they concerned with? Decisions having to do with abortion literally have lives hanging in the judicial balance. Justice Thomas, writing in his dissent in Whole Woman’s Health said:

“Our law is now so riddled with special exceptions for special rights that our decisions deliver neither predictability nor the promise of a judiciary bound by the rule of law.”

He went even further in his dissent in this present case, stating that the Court was unbound by the Constitution itself, when the Court concluded…

“…that Louisiana’s law is unconstitutional under our precedents. But those decisions created the right to abortion out of whole cloth, without a shred of support from the Constitution’s text. Our abortion precedents are grievously wrong and should be overruled.”

Justice Thomas is indirectly talking about the legitimacy of the Court. Theologian Richard John Neuhaus discussed the problems of legitimacy that courts will face when the Law deviates from what he called the “Rightness of Things”. In a speech he delivered at the centennial celebration of the School of Law at Valparaiso University in the late 1970s, he concluded (as do I):

“[W]ith regard to law, there is nothing in store but a continuing and deepening crisis of legitimacy if courts persist in systematically ruling out of order the moral traditions in which western law has developed and which bears, for the overwhelming majority of the American people, this society’s sense of right and wrong. There is in store a continuing and deepening crisis unless a transcendent moral purpose is reasserted by which the state can be brought under critical judgment, unless it is made clear once again that the state is not the source but the servant of the law.

“With apologies to Spinoza, transcendence abhors a vacuum. Today there is such a vacuum in the public space of American law and politics. Unless it is democratically filled by the living moral traditions of the American people, it will surely be filled, as has so tragically happened elsewhere, by the pretensions of the modern state. As the crisis of legitimacy deepens it will lead — not next year, maybe not in twenty, but all too soon —to totalitarianism or to insurrection or to both.”

A new cautionary tale for heritable genome editing

A fundamental concern about applying gene editing to human embryos is how to limit the risk of errors, or “off-target” effects.  One makes an edit to change a bad gene’s defect, and presumably prevent the disease the defective gene would cause.  But the current methods to do that, although apparently highly selective, might still make other, unwanted changes as well—with possible deleterious, even disastrous, consequences.

Heretofore, the attention to these “off-target” effects has largely been directed to changes in genes that are separated from the target gene.  However, a recent news item in Nature describes three recent experiments with human embryos in the laboratory, in which large defects were induced in the chromosomes bearing the target gene—that is, right next door.  The difference is a bit like the difference between damage by shrapnel (distant effect) and blowing a 6-foot hole instead of a pinhole (near effect).  The latter is now the new concern.  Apparently, and, for one who does not live the scientific details daily, amazingly, prior analytic techniques were missing the possibility of these big, close-in errors.  “CRISPR gene editing in human embryos wreaks chromosomal mayhem,” the headline reads.  Geez Louise…

The technical details are still to be worked out, but one possibility is that, after the targeted gene is cut by the editing mechanism, the way that repair of the genes is done by the human embryo creates the possibility of introducing errors by copying or shuffling of a big chunk of the gene.  These processes are not fully understood in human embryos, and may be different from what pertains in mouse or other animal embryos, or in single human cells such as egg cells or newly-fertilized eggs.

The big technical message is that a lot is poorly understood and will take a ton of work to sort out before one can be confident that a pregnancy carrying a gene-edited to-be-born human will birth a healthy baby, in the immediate outcome, never mind consequences later in life.  It further suggests that no amount of animal work may lay the matter to rest.  From that it’s hard to avoid the conclusion that many embryos will need to be created, altered, and destroyed for research purposes if heritable human genome editing is to proceed with some assurance of safety.  How long would those embryos have to be kept alive to test?  Quite possibly longer than the few days currently possible and accepted by the scientific community.

Absent that, trying to birth gene-edited children would mean, as this blog said some time ago, that “the babies are the experiment.” 

And, even if one does not grant moral status to the human embryo from the point of conception, one is compelled to seek an accounting of the compelling unmet medical need that supports a careful benefit-risk analysis.  Risks to human subjects—embryos, fetuses, eventually-born babies, women donating eggs, perhaps even women carrying partial pregnancies (to allow study of results from a later point in utero?)—seem substantial, overall costs of the effort raise questions of spending the money better elsewhere in the overall health care of society, and alternative approaches to the diseases in question must all be considered.

Geez Louise.

One other point: the Nature article cites preprints posted, prior to peer review of the science, on the website bioRxiv.  Operated by the outstanding Cold Spring Harbor Laboratory, the website offers authors the chance “to make their findings immediately available to the scientific community and receive feedback on draft manuscripts before they are submitted to journals.”  Open access and public feed back are good, but the general press often picks up these preprints, whose quality may not have been fully vetted, and runs with headlines—kind of like I am doing here, following Nature.  So we must watch this space to be sure that the research is being accurately described and interpreted.  For the moment, the topic of this post can be taken as another example of “something to watch out for.”

Surreal Times

Happy Independence Day to all our readers! 

Vacation time for our family means spending some time at a cottage in a northern state, and often includes early July, which is the case this year.  It occasions a simpler life, punctuated with small town activities.  One of those activities has been the 4th of July parade.  Among the parade’s attractions (ostensibly for the children) is the candy thrown out from the emergency vehicles and floats driven by.  A few years ago, a local plumber added a new feature to the parade.  The central feature of their float was a port-a-potty, and the owner and employees threw out to the crowd not candy, but rolls of bathroom tissue.  Now in 2020, there was no small-town parade.  Instead, a flotilla of boats, led by the sheriff’s boat and siren, paraded in a clockwise direction around the lake.  The beautiful vintage wooden boats led the parade, and for the first time, modern boats were allowed to join. It was a bittersweet time:  a time of celebration yet a time of recognizing that much has been lost in our culture in recent months.  It was not mourning simply the fact that no one is dispensing free toilet paper to the gathered masses.

The toll of the novel coronavirus in our midst continues to mount.  Whether by illness or by death of one known to us, many in our nation have been affected.  New York has been particularly hard hit, with some seeds of that tragedy being planted only a few years ago.  I penned an article highlighting the timeline of the COVID-19 pandemic disaster in New York, especially regarding the elderly and it is available here.

In such a surreal time as we find ourselves, it seems fitting that I would receive the following prayer in an email today.  It was sent by an Anglican friend of mine, who has dual citizenship in the U.K. and the U.S.:

Collect for Independence Day

Lord God Almighty, in whose Name
the founders of this country won liberty
for themselves and for us,
and lit the torch of freedom for nations then unborn:
Grant that we and all the people of this land
may have grace to maintain our
liberties in righteousness and peace;
through Jesus Christ our Lord,
who lives and reigns with you and the Holy Spirit,
one God, for ever and ever. Amen.

The Problem with Retractions

It is not uncommon, at least in my small town, for our local newspaper to publish, usually on its front page, the news of a malpractice case, complete with the initial accusations of incompetence directed against the physician in question and description of the horrible medical outcome suffered by the patient. The physician’s reputation is at least called into question, if not ruined, by accusations that appear at the time to be accurate reporting of the factual events. In most of these cases, often after one or two years of lengthy court proceedings, the physician is found to be completely innocent of any wrong doing. The newspaper, if they publish a follow-up at all, place a short update article buried in an obscure section in the middle of the paper. That article rarely has the excitement and prominence of the initial article and the physician’s reputation remains tarnished or at least clouded despite the absence of any wrong doing or error on his or her part.

Similarities can be seen with retractions in prominent medical journals, with obviously more national or international impact. Take the recent publications in both the New England Journal of Medicine (NEJM) and the Lancet of reportedly large population studies showing both the lack of efficacy and potential life-threatening side-effects of hydroxychloroquine in treating COVID-19. Both of these studies were reported by all of the national news networks in the US, further fueling the ongoing oddly hyper-political situation that has plagued the COVID-19 pandemic.

This past week, both the NEJM and the Lancet posted retractions of the COVID-19 hydroxychloroquine studies. In similar fashion to the malpractice articles in my local newspaper, the retractions, at least initially, did not receive the secondary reporting enjoyed by the original articles. To their credit, the Lancet stamped “RETRACTED” over the link to the original article and provided an explanation of their retraction. The NEJM only placed a small thin red banner with small text “This article has been retracted” above the article at the original link, which I overlooked when I first viewed the original link.

Lack of fanfare is not the only problem with the retracted medical studies. As reported recently in Science, the data in the flawed Lancet article has affected other ongoing reputable studies:

“But the Lancet paper, despite its retraction, will make it more difficult to continue current trials, [says Nicholas White, who runs one of the largest pre-exposure prophylaxis trials of hydroxychorquine for COVID-19]. Published on 22 May, the [now retracted Lancet] study claimed, supposedly based on data from 96,000 patients around the world, that hydroxychloroquine and chloroquine, whether given alone or in combination with another drug, caused a steep increase in deaths. That led many regulatory agencies to ask scientists to halt their trials and make sure they were not harming their patients. Recovery and Solidarity [other ongoing studies] were temporarily halted but resumed after a safety committee took a look at the data… Many other studies are still on pause.”

The point in today’s blog entry is not to determine whether hydroxychloroquine should be used to treat COVID-19 or to solve the politization of the COVID-19 pandemic. Rather, like the previous blog entry on “Trust and the Pandemic”, it is to point out that retracted studies in reputable medical journals, published for whatever reason, deserve substantially more attention when they are retracted than the follow-up given to small town malpractice headlines. While discovering the truth is important in both cases, failure to correct the latter only affects the reputation of an honest small town physician; failure to correct the former may affect the health and welfare of us all.

Racial justice and being created in the image of God

I have a friend who teaches public health. We share a common faith and a common commitment to living out that faith. However, we have different priorities. In medicine he focuses on the overall health of populations, while I tend to focus more on the needs of individual people and the relationship between the patient and a physician. His career has involved researching the health needs of particular populations, many times in large cities. My career has involved caring for individuals, mostly in small rural communities. Much of his research has involved the health needs of the African-American community. My medical practice has involved people in small rural Midwestern communities where African-Americans make up a very small percentage of the population.

Both of us believe that all human beings have been created in the image of God and deserve our respect. When we talk about ethical issues I tend to remind him that our understanding that all human beings have been created in the image of God means that we need to stand up for the value of human embryos and fetuses who are unable to stand up for themselves and for those with disabilities and those who are dying who may be treated as having less value than other human beings. He reminds me that we need to stand up for those in the African-American community and other minorities who are made in the image of God but suffer many injustices in our society.

Since I retired from practicing medicine my primary way of standing up for the value of every human being is through teaching. I try to help my students understand what it means that human beings have been created in the image of God and how that impacts the moral issues that we face in bioethics. My friend also teaches that to his students, but also expresses his faith and values by living among and worshiping with his African-American neighbors who have become his friends as well as those that he advocates for. He has learned to incorporate what he believes into how he lives. That is what we need in our society to move toward racial justice and reconciliation. The understanding that every human being is created in the image of God needs to become how we live.

Nursing Homes and Rights in New York

During a pandemic, some rights may be set aside for a time. Is that what happened to nursing home residents in New York?

Residents of nursing homes (NH) in the state of New York have specific rights spelled out on the NY Department of Health website. Regarding “Clinical Care and Treatment,” thirteen rights are listed. The webpage listing these rights was last revised in June 2010.

Fast-forward to June 2020.  As of 3 June 2020, there have been 6,068 confirmed or presumed COVID-19+ patients die in NY nursing homes.  Undoubtedly more patients from nursing homes have died of COVID-19 during the pandemic, but New York only includes in their tallies the number of people who die in the nursing home.  If nursing home residents die elsewhere of COVID-19, they are not counted as nursing home deaths.  On 10 May, Governor Cuomo told reporters, “We’ve tried everything to keep it out of a nursing home, but it’s virtually impossible. . .” What happened? 

On 25 March, less than three weeks after Governor Cuomo had declared a State disaster emergency due to the coronavirus pandemic, another statement was issued from the New York administration.  This one was sent from the New York State Department of Health to nursing home administrators, directors of nursing, and hospital discharge planners.  It was an advisory regarding “Hospital Discharges and Admissions to Nursing Homes,” and stated in part

 . . . No resident shall be denied re-admission or admission to the NH solely based on a confirmed or suspected diagnosis of COVID-19. NHs are prohibited from requiring a hospitalized resident who is determined medically stable to be tested for COVID-19 prior to admission or readmission.

Visitors to nursing homes had been locked out as of 12 March.  Then persons who were “medically stable”—including COVID-19+patients—were readmitted or admitted for the first time to the nursing homes.  Nursing homes were not allowed to require a test for coronavirus prior to admission/readmission.

So much for the rights of newly admitted or readmitted NY nursing home residents to

  • adequate and appropriate medical care, including nursing, rehabilitation therapies, social work, dental and other professional services for which you have been assessed to show need;
  • be fully informed by a doctor in a language or a form that you can understand (using an interpreter when necessary) of your total health status, including but not limited to your medical condition including diagnosis, prognosis and treatment plan;
  • ask questions about your medical condition and have the questions answered;

What about the residents in whose midst COVID-19+ patients were admitted or readmitted?  What about their rights to

  • refuse to participate in experimental research;
  • be fully informed in advance about care and treatment and of any changes in that care or treatment that may affect your well-being;
  • participate in planning your care and treatment or changes in your care and treatment

Does re/admitting persons with a virulent infectious disease into a closed environment of vulnerable people  equate to experimental research?  These were certainly changes in their environments that could affect their well-being.  How could nursing home residents “participate” in their care or treatment under such circumstances?

What happened to these rights during the response to the pandemic? Did the State give these rights to the nursing home residents, and therefore, could the State take them away?  No one envies the weight of the burden of the pandemic on the citizens, the health care system, or the elected and appointed governing officials of New York.  Choices made, however, have consequences, and some people live with those consequences.  Others don’t.

Essential Services

Until the pandemic, no one spent much time wondering about whether something was an “essential service”. This designation has granted necessary special exceptions to community mobility access restrictions created by government imposed “shelter-in-place“ orders instituted to slow the spread of the virus. Throughout the pandemic, determining what was and still is considered essential has been an interesting debate not without its bioethical issues .

Merriam-Webster Dictionary says that the adjective essential “implies belonging to the very nature of a thing and therefore being incapable of removal without destroying the thing itself or its character.” With respect to the COVID-19 pandemic, an essential service is one that provides for or protects the life of any person, as life is certainly one thing that everyone seems to agree pertains to the nature of a human being. Therefore, anyone whose job it is to provide for or protect the life of another is providing an essential service. Easily included in that group are those at the front lines of disease management such as doctors, nurses, and first responder EMTs. The list also requires jobs that provide distribution or protection of our daily needs such as grocers (“milk and bread”), pharmacies, utility workers, various government services, firefighters, police, transportation services and nursing home providers. The list then quickly expands to suppliers of those jobs like farmers, medical equipment manufacturers, gas stations, and, well, the list goes on.

In Denver, the list of essential services promulgated by the mayor initially did not contain liquor stores and recreational marijuana shops (though that list did include medical marijuana dispensaries). Within hours of the release of the initial essential services list, after a strong public outcry, those businesses were reclassified as essential. Apparently, a large number of Denver residents believed that services provided by liquor stores and recreational marijuana shops were essential to their lives.

More recently, various religious groups are arguing with their respective governors that their religious services are also essential and therefore churches deserve to be opened sooner rather than later. The variability between the various states as to how each relaxes its own public access restrictions has likely contributed to these disagreements leading to several lawsuits. The Supreme Court just ruled against a California church in a case balancing religious liberty and public health. While public health concerns were indeed cited as the main issue, also at issue was the classification/determination of how essential was the service in question (i.e into what tier was the church service placed compared with other non-religious, non-essential services). In other words, how essential was the non-essential service?

Answers to the questions about the essence of a human being provide the basis for our bioethics. One’s worldview affects those answers. The open debate as to whether human essence transcends death should at least give us pause to reconsider the ranking in our list of essential services.