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.

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].)

Trust and the Pandemic

One of the necessary requirements of a doctor-patient relationship is the establishment of trust in that relationship. A vulnerable patient presents to a physician who theoretically has the skill and knowledge necessary to help resolve the patient’s problem. Ultimately, the patient has to trust the information and treatment recommendations of his or her physician. Even in situations where the initial diagnosis turns out to be incorrect, it is the trust bond between the patient and physician that allows the two to proceed to other diagnostic and treatment options. If trust is lost, it is less likely the patient will have confidence in the information or treatment suggestions by that physician, often resulting in the patient looking elsewhere for treatment.

On a larger scale, the general population must trust the information and recommendations from their Public Health experts before they will be willing to follow treatment protocols, such as those presently in place for the COVID-19 pandemic. Loss of trust in those public health officials, for any reason, will not only lead the public to look for other sources of information and treatment options, it will also make them less likely to follow guidelines and restrictions currently in place, particularly if those guidelines and restrictions are viewed as inconvenient or harmful.

What does the public do when the usual trusted sources of information on the pandemic are shown to provide false information? Take for instance the recent CBS News story on long lines for testing at Cherry Health in Grand Rapids, MI. It turned out the long car lines awaiting virus testing at this particular testing facility were artificially exaggerated, with both the news network and the health system denying responsibility for the falsehood. Purposefully falsifying the data being shown to the public ostensibly being used to determine healthcare policy related to the pandemic does nothing to foster trust by the general population in either the health system or the news media.

What does the public do when two publicly acknowledged experts on the current pandemic claim the data that the CDC has provided them (and the public) are not only inaccurate but the two experts disagree as to whether the actual data represents an overestimation or underestimation of the problem? This link from the Philadelphia Inquirer quotes Dr Deborah Birx as saying “[t[here is nothing from the CDC that I can trust” in expressing her concern that the number of COVID-19 deaths reported by the CDC are inflated. The same article reports Dr Anthony Fauci expressing concern that the same CDC death toll represents an underestimation. It is no wonder that increasing friction is growing in multiple regions of the US as people struggle with the continued personal safety concerns regarding the virus and the growing economic disruption caused by our personal and public responses to the pandemic. Jerry Risser provided a thoughtful blog entry of the bioethical issues of this public health vs economics struggle (absent this present blog entry’s concern of data reliability)

A recent May 14th podcast from the New England Journal of Medicine (NEJM) provided some optimism in an interesting behind the scenes overview of how a respected medical journal like the NEJM determines how to provide reliable information on the current Pandemic. It is approximately 19 minutes of audio and is well worth review. While the NEJM is not perfect, they transparently discuss how they go about providing reliable, trustworthy medical information to the medical doctors on the front lines treating medical problems in general, and this pandemic in particular. They openly discuss several problems that NEJM has with the sheer magnitude of current data juxtaposed with the goal of getting information out to the public in a timely manner (8:15), the question of actual content selected for publication (complications vs clinical trials – 11:00), issues of best evidence (randomized trials vs how to treat the patient in front of the doctor right now- 12:10) and determining strategies to assist in opening up the economy (14:40). One gets the sense after listening to the podcast that smart people are truly trying to get the best data to the front-line people in public health in order to provide the best care possible and that is reassuring.

I suspect (trust?) that many other medical journals, public health authorities, federal, state and local government officials are working to do the same. One of my patients reminded me that even if that is not the case, Proverbs 3:5-6 is reassuring.

Covid-19, Economics and Bioethics

Bioethics, in its essence, is multi-disciplinary. It involves medicine, philosophy, theology, political science, and supernumerary other scholarly fields. And, of course and, perhaps, unfortunately, economics. Bioethics is blessed, and plagued, by its confluence of academic influences, and operates within their inevitable, intersecting, conflicting, uncomfortable gray areas. The Covid-19 pandemic speaks to the bioethical implications that go beyond who gets ventilators and when do we get a vaccine to even more elemental questions. Can we survive the economic paralysis that comes from a quarantine designed to arrest or slow the spread of the novel coronavirus in the United States? Was it “worth it” to force a government shutdown of many industries in an effort to keep our population as safe as possible….and, perhaps, forestall further economic devastation…and, even if so, what is our endgame?

I write this as a veterinarian, a bioethicist, a small business owner, a father of three high schoolers suddenly thrust into “e-learning,” and the son and son-in-law of octogenarians. If those seem conflicting interests, then they are indeed representative of just what a mess this pandemic finds our society. We aren’t unique but, in so many ways American, have managed to find ourselves the world leaders in Covid-19 deaths, infections, tests and are the economic “canary-in-the coal-mine” for the industrial world.

The Atlantic, hardly a shill for the Trump administration or its apologists, has a sober assessment, two months into the general national “quarantine” zeitgeist that has been our reality in most of America. The complex effects of the coronavirus on our economics are described in this piece, one that also looks at what those economic effects have on other nations and, yes, the mental and physical health of our own citizens. It isn’t pretty. Macroeconomics is a bioethics issue.

Americans have now been forced to face, and decide between, our competing ethics of safety (a biggie in contemporary society), personal liberty (autonomy, in ethical lingo, another biggie) and self-sacrifice for a greater civic good (mostly read about in vintage World War II texts, but bringing on a new significance). And it seems we can’t begin to reconcile them, so we just retreat into support of one of the first two, claiming the third as its moral anchor. As we are seeing, this is no way to orchestrate a response to a pandemic that has left (as of this writing) over 80,000 Americans dead and an economy that currently can only be measured by the Great Depression levels of unemployed, but really should only begin to be assessed the way we do tornado damage…when the sun comes up and the clouds lift.

There are no numbers to encourage us. Yet, reports tell us that there are available hospital beds and ventilators, and that the navy ships brought in to our urban “hot spots” to offer more space were (thankfully) never needed. We succeeded in “flattening the curve,” that goal that was always our fundamental one when we paralyzed our economy and society many weeks ago. So what is the goal now? Is it avoiding a new wave that will create a curve that needs flattening again? Is it a quick or gradual reversal of the paralysis of the economy that lets us eat out, shop in malls, have gatherings with friends, play sports and see marching bands perform, and worship in community again? Governors have played a primary role here, perhaps an illustration of the wisdom of federalism to some, the limitations of the same when dealing with a pandemic across fifty free borders to others. It is inescapably political in an election year…do you want to see people die or go bankrupt? That is our apparent binary choice, and our political polarization has already entrenched the position of each side.

I reinforce to my clients who are making decisions for my patients, their pets, as well as to my own children, should they be listening, that every decision we make has consequences, and virtually none makes everyone a winner. The Atlantic article mentions the profound economic devastation that comes to our health if we enter an economic abyss. Some of that is already realized. That bioethical decisions are inextricably economic should be painfully obvious to all. It has always been the “elephant in the room,” sometimes at a micro- and others at a macro-level. We have viewed economics as, at best, a stern taskmaster who wants to ruin a good thing and, at worst, the archenemy of bioethics. In the West at least, we have been blessed by wealth to make high-level bioethical decisions. The challenge of who gets dialysis was answered by “everyone,” because we found a way to pay for it without creating economic devastation. When that wealth erodes, we are on a different playing field. Covid-19 shows us what happens when a bioethical decision runs headlong into economics. Again, it isn’t pretty.

Fundamentally, we need to decide what human dignity and human flourishing look like in a modern society. Justice for all, and with particular attention paid to those at the margins, always dictate this. The margins we face in Covid-19 are, of course, the elderly, the immune-compromised, the chronically ill. But they are also those who struggle in good times to make financial ends meet and who are suddenly out of work weeks after the highest level of employment in recent history. Some are facing mental health and addiction crises. Global poverty, and its accompanying hunger and death, will rise. Whether one out of five or one out of ten, whether in North America or sub-Saharan Africa, we have a group of people at the margins. The number will inevitably widen as the storm damage is fully assessed. To fail to account for them in our public health decisions is inept and insensitive. To ignore the power of a disease caused by a novel virus for which no nation in the world has yet achieved “herd immunity” is no better.

Be careful how strongly you support either position. Those who lead, ultimately, are successful when they disappoint those who follow them equally. This is not a Solomonic baby-splitting, but the hard work of public policy and personal behavior. We will give up (and already have given up, to a great extent) some things that are excruciatingly painful losses. Our Western obsession with safety, with the quest for immortality that cannot be realized, for choosing death on our own terms and in our own time, has come under attack. Now we can be safer, but lose our prosperity, or remain wealthy but sacrifice many more thousands of our own. We can’t have both. Our public health decisions must recognize that national and global economics are bioethical, human flourishing, epidemiological decisions that cannot be ignored. A cavalier approach to loss of human life is ghastly, and an economy that fails means a health care system that fails.

Bioethics and the Study of Health Care Economics

A recent Technology Review article by Peter Dizikes featured a review of the academic work of Dr. Amy Finkelstein, an MIT economics professor who arguably has changed the way we understand the economic impact of health insurance. Though not the primary focus of her work, her results have also led to a better understanding of health care itself. The article may be found HERE. Though a significant part of the article is biographical of Dr. Finkelstein’s academic career and is interesting in its own right, I want to focus on a couple of her findings for this blog entry.

The main study upon which the article focused was the result of an opportunity she identified in 2008 when the State of Oregon increased its enrollment in its Medicaid program by 10,000 people via a random lottery. This allowed her to compare the new enrollees health care access and behavior against a similar control group that had been randomly denied similar access. Some interesting new insights emerged. For instance, it was assumed that since the uninsured people routinely used the ER to access medical care, providing them Medicaid insurance would increase their access to routine care thus decreasing their use of ER care. What Dr. Finkelstein found was that the new Medicaid enrollees increased their visits to the ER and this increase remained elevated for at least 2 years compared with the control group. In fact, the new Medicaid group showed increased doctor visits overall, as well as increased prescription drug use and increased hospitalizations. Their out-of-pocket medical expenses and unpaid medical debt both decreased. And, while their physical health measures did not change appreciably, they reported increased good health and had less incidence of depression.

Additionally, the article summarized seven other interesting findings from Dr. Finkelstein’s body of work thus far. I will leave the reader to explore the whole article for these details. One result of a 2020 study that was particularly interesting to me as a physician was the current practice of so-called “hotspotting”, the practice of providing pro-active care to high-risk populations in an attempt to reduce the patient’s hospital readmissions. Dr. Finkelstein showed that hotspotting appears to have no significant benefit in reducing readmission rates of those patients. It is good to determine whether or not our medical protocols, which sound reasonable on their face and therefore appear justified, are in fact accomplishing their intended results, particularly since these programs require both additional time and financial resources.

The reason to highlight Dr. Finkelstein’s work in a bioethics blog is to reinforce the importance of using good data to make informed decisions in health care. Understanding the true effects of medical policies in health care access, insurance or provision is just as necessary as debating their bioethical challenges, as the former may make the latter debates either more fruitful or completely unnecessary.

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.

Causes of Death Coding in COVID-19 Pandemic

Reporting causes of death is an important function in our society, and involves a number of people in completing each death certificate:

  • Pronouncer of death – may be a physician
  • Certifier of death – usually a physician; assigns cause of death
  • Funeral director – completes the demographic information, next of kin, and burial information portions of the death certificate
  • Local registrar or health department – registers the death certificate, and has long term management responsibility of same

The Office of Vital Statistics performs statistical analysis and reports on the mortality data, which are used in many ways, including surveillance of diseases, tracking of national deaths in emergencies and pandemics, and to justify health spending. Any misinformation along the way will impact not only the individual death certificate, but also all the data that includes that death certificate.

Death certificates are legal records. The physician as certifier of death “determines and accurately records the sequence of medical conditions that resulted in death. When the physician signs the certificate, he or she has legally certified that, to the best of his or her knowledge, the individual died for the reasons listed under the cause of death.” (CDC online course on “Improving Cause of Death Reporting (Web Based),” WB2959)

The Cause of Death (COD) portion of the death certificate entails two main sections. Part Ia is where the immediate cause of death is listed, and subsections Ib, Ic, and Id detail the sequence of events, listed backwards in time, that culminated in the proximate cause of death. Any other diseases or conditions that may have contributed to the person’s demise are listed in Part II.   The COD is the important part of the death certificate as far as vital statistics are concerned. The use of “suspected,” “probable,” or “possible” has been previously discouraged in the listed COD on death certificates. In fact, the above-referenced course currently offered by the CDC does not include such possibilities.

But that has changed with the COVID-19 pandemic. The World Health Organization issued its International Guidelines for Certification and Classification (Coding) of COVID-19 as Cause of Death on 20 April 2020.  They declared, “A death due to COVID-19 is defined for surveillance purposes as a death resulting from a clinically compatible illness . . .” New ICD-10 codes have been developed. For cases in which the virus has been identified, the code is U07.1; and when it has not been identified, but COVID-19 is “probable” or “suspected,” the code is U07.2. (p. 8/14).

The CDC’s National Vital Statistics, likewise, published new “Guidance for Certifying Deaths Due to Coronavirus Disease 2019 (COVID-19)” in April.  They indicated that the Underlying Cause of Death (UCOD) “should be reported on the lowest line used in Part I” of the death certificate. Although the document encourages testing if possible, the completion of a death certificate does not require it:

In cases where a definite diagnosis of COVID–19 cannot be made, but it is suspected or likely (e.g., the circumstances are compelling within a   reasonable degree of certainty), it is acceptable to report COVID–19 on a  death certificate as “probable” or “presumed.”

The advice goes further, to say that if COVID-19 is involved, “it is likely the UCOD and thus, it should be reported on the lowest line used in Part I of the death certificate.”

What are the ramifications of such changes to death certificates?

  •  Possibly inflated COVID-19 death counts
  •  Perhaps (unfairly) increased federal aid to areas with inflated COVID-19 deaths
  •  Under-reporting of other causes of death, and resulting lack of attention to  appropriate health concerns
  •  Loss of veracity in the persons responsible for completing the death certificates       
  •  Loss of trust in a system that has been manipulated

None of these is desirable, and all will cost us in the end.

 

“The Science” and Moral Judgments

Some common mislocutions are simply insufferable.  One is, “It’s in my/our DNA,” implying that a commitment or habit or practiced behavior is genetically hard-wired.  No, it isn’t.

Another is, “I/we will follow the science” to make judgments.  If by this is meant, “I will face facts rather than engage in wishful thinking,” then hear, hear.  If by it is meant, “I will heed experts to explain data that I am less equipped then they to interpret,” then again, hear, hear.

But it seems that all too often what is really meant is, “I will be objective but we all know that you are not,” or some other means of asserting certitude and foreclosing argument and discussion.  In this sense, appeals to “the science” take the place of bygone appeals to Holy Writ.  And when so invoked, “the science” is sometimes, I fear, misused.  There are at least three errors to which we should be alert.

First is failure to account for uncertainties in measurement or assessment.  This has been on full display in discussions of epidemiologic forecasts of the effects of the COVID-19 pandemic.  All empiric measurement and analysis carry uncertainty, which must be assessed and reported, especially when forecasting complex events.  Readers who doubt this are referred to Nate Silver’s excellent and entertaining 2012 book, The Signal and the Noise.  Forecasts are only as good as the data that go into them, and always have some degree of uncertainty.  The forecaster should account for that, and, in fact, to the degree possible, should also assess how sensitive the forecasts are to changes in the input assumptions.

Forecasters such as Dr. Murray at the IHME do indeed report their uncertainty (look at those wide shaded bands with the forecasts), but these are often lost in discussion, much less their sources and underlying assumptions reviewed and sensitivity to changes in those assumptions described.  (Listening to his interviews, I wonder whether Dr. Murray is not somewhat pessimistically oriented in his assumptions, but that is not a point for this blog post.)  Then again, as more data are collected, the forecasts should be more refined, and they are.  Some policy makers in the current outbreak chose to risk erring on the side of caution—a reasonable approach—but that does not mean either that they were entitled to a claim of certainty in the predictions or that the forecasts themselves were somehow suspect or illegitimate in retrospect.  It was just the nature of the uncertainty.  But recognizing that demands some humility in prospective judgment and in retrospection.

Second is confusion of facts with values. It is one thing to say, “if we do X, then my best estimates suggest there is serious risk of Y,” and quite another to say, “because of my forecasts, X is out of the question because of the risk of Y,” without also assessing the real costs of both X and Y and their relative likelihood.  That is, there are tradeoffs.  Now, epidemiologists and economists both clearly are aware of tradeoffs, but the former seem to be viewed as somehow purer in aims and methods than the latter.  Yet a prominent bioethicist who has counseled extreme caution regarding relaxing mitigation efforts in the pandemic offered on television that schools might be opened soon as long as parents were informed of the risks of sending their children back to school.  This is a defensible position.  It’s just not one that falls out of scientific assessment.  It involves value judgments, and no one in a position of authority approaches the current situation value-free.  If we forget that, then our medical professionals might come off as, or be viewed as, scolds.

Third is the stubbornness of the ad hominem.  We should accord properly-credentialed experts their place of honor and authority in complex discussions, but their expertise does not confer on them certitude even of their prognoses (see above), much less certitude about all the consequences for action that might ensue.  To wit:  last month, when Governor Cuomo asserted, quite energetically, that New York State needed 30,000 ventilators to care for people who had fallen gravely ill, he was challenged by one citing a countervailing forecast that suggested the state’s true need was substantially less.  But that challenge was articulated by Mr. Kushner, citing forecasts the White House was looking at, and a common public response was that the White House stance must be incorrect or corrupt precisely because Mr. Kushner (who, one friend has recently told me with confidence, is “a clown”) was making it.  I don’t know exactly what Mr. Kushner said, or whether he was right, or whether even his projection was more or less accurate or prudent at the time.  The actual number of ventilators needed by New York for this phase of the outbreak, with more data, now appears less than 30,000.  Why?  The answer is not clear.  One can think of several possible explanations.

Still—someone once wisely told me that the merits of an argument depend on its quality, not on the identity of who is advancing it—or on one’s opinion of that person, or on one’s opinion of one’s own intelligence.  The current crisis demands calm assessment of “the science,” properly interpreted, as well as of the very difficult tradeoffs that appear to be in the offing.  And, in this, the experts are not the only ones who should have a voice.  We demand that last point in the relatively small matters of human subject research and use of biomedical technology.  How much more so in the current moment.

Negative QALY Scores and Voluntary Euthanasia

I am all about saving money. I also enjoy reading the bioethical insights of Wesley Smith. His recent commentary in National Review entitled “Bioethicists: Euthanasia Will Save Money and Facilitate Organ Donations” naturally caught my eye. This blog has discussed the ethical problems with euthanasia and organ donation previously (see HERE and HERE). The focus of the remainder of this blog entry is to challenge the use of negative Quality-Adjusted Life Years (QALYs) as a utilitarian determinant of healthcare resource management, particularly with respect to voluntary euthanasia.

The article upon which Smith is commenting appeared in Clinical Ethics on March 10th by David Shaw and Alec Morton and was entitled “Counting the cost of denying assisted suicide” (full article behind firewall – abstract HERE). The authors briefly review the use of QALYs as used within the UK National Health System to determine cost/benefit of allocating medical resources. They explain the concept of negative QALYs, effectively time spent living (and suffering) in a state worse than death. They argue improvement occurs in the overall NHS net QALYs when there is reallocation of actual medical resources consumed “by patients who are denied assisted dying [and therefore experience negative QALYs]…instead be used to provide additional (positive) quality-adjusted life years for patients elsewhere in the healthcare system who wish to continue living and to improve their quality of life.” The argument essentially is that voluntary euthanasia prevents additional negative QALYs in the person requesting euthanasia and increases positive QALYs in one or more individuals in the population at large through the reallocation of the medical resources presently consumed by the person requesting euthanasia. Following the voluntary euthanasia and medical resource re-allocation, the NHS system is subsequently more efficient or economical since there are overall higher system QALYs given the same resources.

For this macabre exercise in utilitarian QALY mathematics to make sense, one has to grant that there is a state in life that is worse than death (by definition death is a QALY = zero). Individuals with terminal diseases and/or chronic pain stipulate their current state is indeed worse than death and therefore they experience a QALY less than zero – a negative QALY. They further believe they have no hope of ever achieving a state of positive QALY so argue their best option is voluntary euthanasia to reach death (so no more negative QALYs). Given all of this subjective stipulation, one might counter that other states of life might also exist that are also worse than death, such as the act of voluntary euthanasia. Perhaps it causes a transitional state of QALY much, much less than zero (something that “regular dying” does not)(since we are all just stipulating here) Any additional stipulations like this potentially further challenge their nice calculus.

Given the above, and perhaps more concerning, it is unclear (at least to this author) why Shaw and Morton used QALYs to score an act of voluntary euthanasia. It is unlikely that an individual goes through a similar calculus to determine whether his or her life is worth living with respect to the general population. He or she is deciding whether or not they want to continue living. They are not using a QALY score to justify their voluntary euthanasia decision to the population at large. So why the QALY score? Might such a calculus be used by one group to mathematically or scientifically justify imposing euthanasia upon another group, particularly within a system where medical resources are (becoming more) limited? Maybe it is just a way to suggest to those of us who find voluntary euthanasia morally wrong that it can’t be all that bad?

After all, it does save money.