Bioethics and the COVID-19 National Emergency

What a difference a couple of days can make. In the last blog entry, Steve Phillips discussed the problems that fear and panic are causing as we deal the many unknowns of the COVID-19 pandemic. While the current incidence, prevalence, and mortality of COVID-19 lags behind that of seasonal influenza (as well as past influenza pandemics caused by novel influenza strains), the eventual morbidity and mortality remain unknown. This uncertainty has caused public panic, which has lead to significant disruption of life, as we know it. A national emergency was declared in the US last Friday, calming some fears but reinforcing others. Using the four Principles of Bioethics as a simple outline, the following are some of the bioethical implications of the current COVID-19 pandemic I have recently considered – there is certainly space to add others.

Autonomy: The highly infectious nature of the new virus and the risks for the population as a whole place severe restrictions on individual autonomy. An individual is really not free to do whatever he or she wishes to do at this time. Measures to blunt the rate of infection spread have limited travel and will eventually cause some to be quarantined, perhaps against their will. Necessary public health measures will conflict with individual health decisions and desires. Do all individuals have a right to be tested for COVID-19 (particularly now that the test will shortly be free of charge) because they have a right to know or demand to know, or will we defer to protocols of best practice in the face of currently limited test availability, all of which are admittedly our best statistical utilitarian “guesstimates” for the benefit of the population as a whole?

Justice: The details of the pending National Emergency legislation are still not well known as of this writing but will apparently provide financial support to individuals and businesses affected by COVID-19 and this is certainly good, given the considerable disruption already caused by the fear and panic related to the disease, and the projected future impact of the actual illness itself. It is interesting to me that one result of this legislation may be that, with accurate testing, an individual or business will get federal benefits for having COVID-19 related problems but may not for similar influenza related problems. This is despite the fact that from an individual morbidity and mortality standpoint, particularly on a global basis, both COVID-19 and influenza both can end up causing severe health and secondary financial consequences. Asked differently, does justice require federalizing other viruses (or diseases) that, on a case-by-case basis, cause similar individual financial disruption as we will see from COVID-19?

Beneficence: I believe most people want to be helpful to others and do the right thing. Any desire to help others is somewhat counter balanced by lack of knowledge of exactly how infectious is the COVID-19 and therefore what risks do we assume for ourselves and for our immediate family in any benevolent activity in which we engage. Deciding how to help others without harming oneself will become clearer as the public health data grows.

Non-maleficence: Our natural tendency for self-preservation in uncertain times has resulted in a rush to hoard food and supplies, causing a severe strain on supply of these resources. Supply chains in a global “just-in-time” inventory structure are much more fragile as a result of COVID-19 than many had anticipated. Important medications, medical supplies, standard foodstuffs and infant needs are suddenly in short supply and are concerning; recent news videos of fights at your local Cosco over the last role of toilet paper are concerning for other reasons. Calls have gone out asking citizens to “hoard less”; hopefully these pleas will not fall on deaf and selfish ears.

For the Christian, wisely loving our neighbors may be the best ethical guideline and will look different in various regions and will likely change over time as we get a better understanding of COVID-19. I echo the many prayers for the health and safety of all affected by this pandemic and an extra measure of the Lord’s wisdom and strength for those in public health rising to meet and resolve this national (and worldwide) emergency.

Coronavirus 2019: A case of fear as a harm from technology

One of the ethical concerns in modern medicine is whether new technology developed out of a desire to help people may cause more harm than good. Most of the time we think about this in relation to therapeutic technology, but it may also be true of diagnostic technology. It is usually good to be able to diagnose diseases more accurately but learning about a diagnosis can cause significant stress and anxiety. When that is not balanced by significant benefit to the person learning the diagnosis, diagnostic information can cause more harm than good.

I think we are currently experiencing this type of harm from new diagnostic technology in the current outbreak of Covid-19, and it may be a while before we know whether our ability to diagnose this new virus has actually resulted in more benefit than harm.  Prior to the development of rapid viral DNA testing this new virus would not have been recognized early in the course of its spread. 3000 or 4000 additional deaths from viral pneumonia in China where there are 100,000 deaths from influenza annually might not have been noticed at all. However, there might have been more deaths if the relatively extreme limitations on movement had not been up imposed on the Chinese people in the region where the outbreak began. There has undoubtedly been benefit from being able to identify those who are infected with this new virus and isolating them to help prevent increased spread of the virus. However, knowing that this new virus exists has led to significant fear and panic. Some of the response has undoubtedly been excessive, and those excesses can cause harm. Locking down the entire nation of Italy, restrictions on travel that may be more than what is necessary, and the closing of workplaces does more than just impact the stock market. People are impacted by an overreaction to this new disease. Those of us who are more affluent have enough margin to get by, but there are those who live week-to-week and even day-to-day may be severely impacted by things that are being done more due to fear and panic than well-established public health strategies.

There are hopeful signs that the number of deaths in China from Covid-19 are rapidly decreasing, and if the impact in the rest of the world is no worse than what it has been in China, the deaths from this virus worldwide will be about 3 or 4% of the number of deaths from influenza each year. That is significantly less than the normal fluctuation in influenza deaths from year to year. It is not good that those people have died, but it is not the end of the world. The ability given to us by DNA technology to identify this virus will have helped through proven public health measures to decrease the impact of the disease, but will the overreactions due to fear and panic cause as much or more harm than the virus? We may never know.

Assisting Suicide — for Everyone — in Germany

In what is manifestly a case of legal and verbal gymnastics, the Federal Constitutional Court of Germany has “found” a right to suicide. The Court announced its finding in a press release, dated 26 February: “Criminalisation of assisted suicide services unconstitutional.”  Calling self-killing, or suicide, “an act of autonomous self-determination,” the Court grounded suicide – and assisting suicide – in human dignity. Here is what they proclaimed: “Inalienable human dignity accordingly requires that any human being be unconditionally recognised as an individual with personal autonomy.”

Further, the Court wrote

Maintaining one’s personality in self-determination requires that the             individual can control their life on their own terms and is not forced into     ways of living that are fundamentally irreconcilable with their ideas of self    and personal identity. In terms of human personality, the decision to end      one’s own life is of the most fundamental significance to one’s existence. For  the individual, the purpose of life, and whether and for what reasons they        might consider ending their own life, is subject to highly personal beliefs and  convictions. The decision to commit suicide concerns basic questions of   human existence and bears on the identity and individuality of that person like no other decision. Therefore, the right to a self-determined death is not   limited to the right to refuse, of one’s own free will, life-sustaining          treatments. It also extends to cases where the individual decides to actively   take their own life.

This right to suicide does not depend upon “serious or incurable illness” or stage of life. Indeed, “this right is guaranteed in all stages of a person’s existence.” The right to suicide cannot be denied based on the argument that suicide forfeits one’s dignity. Actually, the Court decided, “the individual knowledge of actually being able to act according to one’s own wishes is in itself a crucial element of asserting one’s identity.” Additionally, “(t)hird parties must also legally be allowed to act in accordance with their willingness to render suicide assistance.”  Finally, the Court opined, “there can never be an obligation, on anyone, to assist in another person’s suicide.”  (See English translation of the Court’s press release here.)

Dies ist eine Dose Würmer! (Translation: This is a can of worms!). A right to suicide gives an incredible bargaining chip to every citizen. Imagine this new power in every relationship. If a teenager does not get his/her way, s(he) can threaten, “Do this, or I will kill myself.” Any spouse or lover could likewise gain the upper hand by such a threat.

There are other concerns as well.  Can a person who has survived a suicide attempt be treated by medical staff in order to repair the damage done to him/herself? Can someone judged to be a possible harm to him/herself be involuntarily committed to a psychiatric institution? Can such a patient even be treated?

Then there are the “assistors.” Who will be “qualified”? Will they need a license?  Although physicians are not required to assist now, will that always be the case? How will the prescriptions be obtained? Will pharmacists eventually be compelled to participate? How much can one charge for assisting suicide?   Since this case was brought before the Court by those who wish to assist suicides, one must wonder about the amounts of money involved and what the flow of it will look like.

But these could be understood to be “mere administrative details,” and in a certain sense, they are. The more worrisome – much more worrisome – issue is the fact that others are being co-opted into becoming killers.

Let’s face some inconvenient truths. Suicide has always been an available option, albeit treated differently in law over time. Suicide destroys a person and violates his/her dignity. It doesn’t forfeit one’s dignity – it forfeits one’s life. And it impacts the lives of family members, often for generations. These effects are difficult enough, but the Federal Constitutional Court of Germany has gone much further. They have legalized the assisting of suicides – for all people, for whatever reasons.

Legalizing the assisting of suicides means co-opting others in the act of suicide. Where is the autonomy in that? The act of killing, whether of birds, deer, cows, or human beings, registers effects in the human psyche (soul) of the killer. In the case of killing animals for food, most consider it an “acceptable adjustment.” Yet if we observe someone killing too easily, or with too little regard for the life of the animal being killed, we worry. Particularly do we worry if the killer is young. What is being – or has already been – done to the psyche (soul) of that person? Is the psyche (soul) malformed? Participation in the act of killing a human being is not just about the one being killed, but also about the one being transformed into a killer. One will be dead; the other will have experienced killing. What has happened to his/her human dignity? Does assisting suicide violate the participant’s human dignity, regardless of how compassionate he/she may feel? How could it not?

More notes on suicide—assisted or not

As one with the letters “M” and “D” after my name, I get emails from a service called Medscape (subscription generally required), with links to a variety of articles on things medical.  This week brings a link to a piece under the title “Inexact Science: is Patient Eligible for Medical Aid in Dying?”   The upshot: physicians who provide assistance in suicide for their patients struggle with two common features of laws around assisted suicide: a requirement that the prognosis for survival be 6 months or less, and the requirement to confirm—usually with concurrence of a second doctor—the patient’s capacity to make decisions.

In the first case, it’s no secret that saying how long any one person, even one with a terminal illness, has to live cannot be done precisely, and there are many mistakes.  A doctor can try three approaches: guess how long she thinks a patient will live, ask whether she will be surprised if the patient is alive after 6 months, or guess the probability of the patient’s living 6 months.  These are three very similar, but logically non-identical, questions.  Doctors’ estimates tend to be more accurate for patients with cancer than for other cases, but they still can be wildly inaccurate.

In the second case, patients’ limited ability to communicate can make it hard to tell whether they have the capacity to freely choose death, or they may have that capacity when the doctor provides the assistance, by prescribing a lethal dose of a drug to be taken later, yet the patient’s decision-making capacity may not be so good at the time the drug is actually taken. 

Readers of this blog will know that the present writer is a staunch opponent of doctor-assisted suicide.  One can sympathize with the difficult cases faced by physicians who disagree on the subject, yet still argue that their best course of action would not be to assist a patient’s dying, but focus on caring for the patient and alleviating symptoms and distress to the end.  A poignant essay in this week’s New England Journal of Medicine (prescription also required) by a palliative care doctor whose patient, with bone cancer, had truly intractable pain, is a case in point.  Here, the doctor did everything she could to control her patient’s pain, using higher doses of narcotics than she ever had or probably ever will again, with no success.  Seeing her patient’s joy in interacting with his family and friends, she resisted sedating him to the point of unconsciousness to death—the last resort for controlling his pain.  “Terminal palliative sedation” comes about as close as possible to active euthanasia without, I would argue, crossing the line because the primary intent is to alleviate suffering, not cause death, although the latter, because of suppressed breathing, may prove unavoidable.  In the case in point, the patient was not sedated, but died over a weekend when the doctor was off; on reviewing his last moments when she returned on Monday, she learned that he had been able to “clink a glass of beer” with visiting friends before he died.  She wondered whether she had treated him too much, tried to be too much of a hero(ine), because she wanted to preserve what was left of his consciousness.  She thought she might be to blame for treating her patient too aggressively in the end.  Reading her account, one must be reluctant indeed to level a charge like that at her.  Her writing makes it clear that she discharged her duties admirably, in a difficult situation.

Finally, I note a headline in today’s USA Today: “Suicide prevention: Many not ready.”  Who is not ready?  Therapists.  Psycohologists.  Practitioners who do not know how to talk to someone who is suicidal, or who are worried about liability if a patient/client actually kills himself, or who are more concerned about assessing how likely a suicide attempt is than positioned to take on the burdens of identifying and addressing the underlying emotional pain.  Better training is called for, the article says.  Perhaps more awareness and caring from folks in general would help.  Ten and a half million people seriously thought about suicide in 2018, it says.  About a third of those made a plan to kill themselves.  About a third of those actually tried.  Over 48,000 died from suicide. Our goal should always be to care for suffering people, but in the process we should reject actively ending their lives.

The Non-Binary Doctor-Patient Relationship

Today’s blog entry continues another aspect of what Neil Skjoldal began yesterday. Shoshana Rockoff, writing in Yeshiva University’s The Commentator wrote about the changing landscape of physician private practice ownership and how that may be changing the doctor-patient relationship for the worse. She reflects on her grandfather’s private optometry practice when she describes the solid personal relationships that developed with his patients over his some 30 years of private practice. She worries what the future of that doctor-patient relationship will look like as both hospital systems and private equity firms, looking to make a profit, swallow up a growing number of practices. Her editorial is found here.

My personal practice experience is not too dissimilar. I began in private practice 30 years ago as a rehabilitation physician taking care of mostly inpatients who had recently suffered a stroke, spinal cord or head injury. I saw outpatients in my daily clinic that had the chronic neuromusculoskeletal sequelae of these problems. The chronic nature of their diseases resulted in my getting to know my patients fairly well, an attribute that I very much enjoyed.

What I did not enjoy was negotiating my reimbursement rates with the insurance system, something I was never trained to do in residency. As a solo practitioner, I had no clout with the large insurance carriers and my rates went down every year. Eager to pay back my student loan debt, I had also accepted a stipend to be the rehabilitation hospital’s medical director, which was my first experience with conflict of interest – I was responsible for making sure that only medically appropriate patients were admitted to the hospital while working with the administration of the hospital to maintain its financial viability at a time when insurance companies were beginning to aggressively assert their financial ability to reduce costs. It is rare, if not impossible, to wear two conflicting hats well, particularly at the same time.

I eventually joined a larger, multispecialty (mainly orthopaedic surgery) physician-owned group practice, where I remain today. Being part of a larger group allows us to negotiate more favorable reimbursement rates than my earlier experience but now from the dwindling number of consolidating insurance companies, who, along with the federal government Medicare and Medicaid programs, dictate those rates. My reimbursement rate has still gone down every year, now at a slower rate. A solo practice or small group private practice has no similar negotiating power with the insurance system. This is, if not the main reason, at least a significant reason that many of my colleagues who were in small physician-owned practices have decided to be acquired by large hospital systems or sell a portion of their assets to equity firms, who naturally exert some influence on future medical business decisions.

Economic decisions have not been isolated to the doctor side of the equation. Individual patients and smaller businesses that provide insurance to their employees lack the negotiation power with these same insurance providers and, over time, have had to settle for insurance coverage that contractually pays for fewer benefits at gradually increasing cost to those same patients or small businesses. Only very large companies or unions have any negotiation power to obtain better insurance benefits at less cost. The recipients of government sponsored insurance programs, such as Medicare and Medicaid, have the least direct costs but also the least direct say in their medical benefits, and these programs presently dictate medical reimbursement for well over one-third of the US population.

I think Ms. Rockoff is correct that it is getting harder to maintain the same doctor-patient relationship that her grandfather and his patients enjoyed decades ago. I think the primary reason is that both doctors and patients have allowed third parties into that relationship, largely for economic reasons, a process that began even before her grandfather started his practice.

I am blessed to be part of a physician-run multispecialty group that remains committed to a (Judeo-Christianized) Hippocratic doctor-patient relationship. I know many of my corporate-employed colleagues desire and work to maintain the same relationship with their patients. Many non-medical business people running corporate practices want that type of relationship with their physician.

The real question may be how to have a doctor-patient relationship when the relationship is no longer binary, and likely never will be again.

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.”

A principalist argument against heritable genome editing

In May of 2019 The New Bioethics carried a paper (purchase or subscription required) by Jennifer Gumer of Columbia and Loyola Marymount Universities, summarizing an argument against heritable genome editing (the kind in which an embryo’s genes are edited so that the change will be passed down to the subject’s descendants), based on Belmont principalism.  A brief outline of the argument:

  • Uncertainties about the safety of the procedure make it highly unlikely at best that the principle of nonmaleficence (“first, do no harm”) will be satisfied.  Even if the technique substantially eliminates unintended, “off target” gene changes or mosaicism (some cells have the change, others do not), uncertainty will remain about whether interactions between genes may be altered, potentially beneficial positive effects of the “bad” genes may be lost, or the edited gene may have different effects in different environments.  Further, the edited gene will persist in the human population. 
    • At least, this concern would appear greatly to limit the number of genetic conditions that would be appropriate for heritable editing, to a few where a very discreet genetic abnormality that causes a devastating disease is well understood.  Such limits would almost certainly be unenforceable, as efforts to edit genes that clearly cause disease would be expanded to edit genes that predispose to or increase risks of disease, or event to insert or add genes thought to protect from disease.  The additional complexity of the tasks would further confound attempts to calculate risks.
  • The justice of heritable genome editing could well be limited by:
    • The costs, either in the individual case or more broadly on the health care system because in vitro fertilization would almost certainly be required to carry out the heritable editing;
    • Diversion of resources from dealing with environmental or socioeconomic conditions with greater overall impact on the health of the human population;
    • A bias against people with disabilities may be fostered.
  • If heritable gene editing included efforts to enhance traits perceived desirable, harms could arise from miscalculations about whether such enhancement truly yields a better life (e.g., if one could be genetically altered to require less sleep), or pressures on the offspring to perform up to enhanced expectations, again violating the principle of nonmaleficence.
  • Efforts at enhancement would create eugenic pressure to extend the enhancement widely through the population, and/or create a split-class society of (presumably wealthy) genetically enhanced “haves” and unenhanced “have nots,” violating the principle of justice.
  • Limiting heritable genetic editing to the few cases of single-gene-caused serious diseases would benefit only a few affected individuals and their parents, by helping the latter to have genetically-related, unaffected offspring, while risks such as those outlined above could affect many, either by creating direct risks in the population or indirect risks of lost opportunities from deferral of attention to other health and societal problems.
  • Likewise, an appeal to autonomy fails.  Procreative freedom has not yet been held to include a right to bear a genetically-related child, much less one free of undesired traits, and even if such a right were recognized, it would not be unbounded, but would be subject to limits set by concerns such as well-being of the resulting child and societal concerns.  Moreover, parental exercise of autonomy for heritable gene editing would limit the autonomy of society by potentially exposing others to unintended risks without their consent, and would limit the autonomy of gene-edited descendants, whose genomes would be determined at least in part by the decisions of their ancestors.

Thus, in brief, runs the argument.  Like the utilitarian argument summarized in my February 6 post, these contemporary discussions are important to review from time to time.  Further perspectives and analysis to follow in future posts.

The Advancing Slippery Slope of Organ Donation and Euthanasia

The timing of organ donation relative to death of the donor is critical to the survivability and future functioning of the donated organs in the transplant recipient. With cardiovascular death, circulation ceases in the donor causing his or her death, making it legally and ethically permissible to retrieve the organs for donation. Unfortunately, cardiovascular death also means that the donated organs have also lost circulation at the moment of death and begin to suffer local tissue destruction, affecting the very health of the donor organs and success of transplantation. If the donor has sustained severe brain damage but without cardiovascular death, he or she may be considered dead secondary to whole brain death criteria. This allows transplant surgeons to begin harvesting the organs from the donor while the organs are still enjoying a normal oxygen supply, maximizing their survivability for the future transplant recipient. These organs are far more viable than those from donors who had cardiovascular death, similar to the situation of a healthy living organ donor voluntarily donating one of her two kidneys. Crudely, the less dead you are when you donate your organs, the better chance of success of the organ transplantation for the recipient. Knowing the exact moment when the donor dies maximizes the timing and therefore the success of the transplant process.

Enter euthanasia, in particular the growing acceptance of medical aid in dying (MAID) or physician assisted suicide (PAS), where a physician is directly controlling the dying process. The union of MAID/PAS and organ donation would seem to be a marriage made in transplant heaven. By controlling the time of death of the donor, the subsequent immediate harvesting of the donated organs would theoretically maximize their viability. What could be better?

Euthanasia via organ donation, of course.

The NEJM offered a recent Perspective entitled “Altruism in Extremis – The Evolving Ethics of Organ Donation” by Dr. Lisa Rosenbaum. The article is behind a subscription firewall that does offer limited free access with registration. In short, Dr. Rosenbaum explores many of these ethical issues in organ transplantation as she describes the case of a man who was dying of amyotrophic lateral sclerosis (ALS or Lou Gehrig’s Disease) and wanted to donate his organs in the process of his MAID/PAS (hence her title “Altruism in Extremis“). In his case, the plan was to donate one kidney, then be taken back to the intensive care unit and extubated, technically allowing the ALS respiratory muscle weakness to cause his death, and the remainder of his organs harvested immediately thereafter. The hospital ethics committee approved the plan but the hospital attorneys warned the doctors they might be “charged with murder or acceleration of the patient’s death” (facts not apparently obvious to the doctors). In the end, the patient died in hospice care, unable to donate his organs.

An interesting sidebar discussion of a similar case involving “live donation prior to planned withdrawal” (LD-PPW – that is, removing the organs before withdrawal of life support – what I have labelled Euthanasia via Organ Donation) was considered ethically permissible but politically problematic, the concern being LD-PPW might reduce the number of willing donors who saw the “surgeons as ‘vultures’ stealing organs from those not quite dead”.

What struck me was the obvious slippery slope on which we find ourselves. The question as to whether the patient in Dr. Rosenbaum’s article should proceed with MAID/PAS given his terminal ALS was NOT the ethical debate but rather how to ethically marry MAID/PAS (perhaps ideally with LD-PPW) with his desire for organ transplantation. Labeling this type of organ donation as obviously altruistic will undoubtedly place further pressure on some presently terminally-ill patients to get on with their deaths to make their organs available for the rest of us who apparently have an unspecified ethically superior claim to their use. Organ donation from a living donor is itself a supererogatory act – additionally encouraging the donor’s suicide (and labelling it altruistic) just to improve the success of the transplant is calling evil good. Why is one more minute of life-giving use of my heart or liver by me necessarily less ethical than 1 year of life-giving use of those organs in another?

P.S. Frankly, I thought the vulture metaphor failed as even vultures normally wait for their prey to be dead before enjoying their harvest.

Withdrawing life-sustaining treatment from an infant and rights of conscience

The is currently a legal (and ethical) debate in Texas over the treatment of a one-year-old infant, Tinslee Lewis (see articles in the Hastings Center Bioethics Forum and the Fort Worth Star-Telegram). Tinslee was born prematurely with a congenital heart defect and subsequent severe lung disease. She has had multiple surgeries and is on a ventilator in ICU. In October Cook Children’s Hospital, physicians, and ethics committee made a decision to remove her from the ventilator in spite of her mother’s desire to have the ventilator continued. This was done in accord with Texas law which allows a hospital to stop life-sustaining treatment of a child against the wishes of the child’s parents if the treatment is futile. Tinslee’s mother went to court and obtained an injunction to keep the hospital from withdrawing the treatment. In January the court decided in favor of the hospital that the treatment could be withdrawn, but that decision was appealed and is now being heard in a Court of Appeals. There are two issues at stake. One is who should be the final decision-making authority for Tinslee. The other is whether the current Texas law is constitutional.

The hospital says that treating Tinslee with the ventilator is causing suffering without medical benefit and that her physicians have a right to decline to participate in such treatment. They support the current Texas law which would allow the hospital to stop the treatment. Tinslee’s mother says that her daughter is not suffering and has actually recently improved. Her lawyers say that the current Texas law is unconstitutional. The two sides have been joined by interesting supporters. The hospital has been joined by the Texas Catholic Conference of Bishops and several other groups including a pro-life group and a disability rights group who argue that the current law provides protection for patients and protects rights of conscience for physicians. Tinslee’s mother has been joined by the Texas Solicitor General and the Texas Attorney General who are seeking to overturn the current Texas law.

The basic ethical question is whether rights of conscience apply in this situation. The physicians and hospital say that they believe that continuing the ventilator is wrong because it is causing suffering without medical benefit and they should be able to refuse to provide a treatment they believe to be wrong because of a right of conscience.

I think that rights of conscience for physicians and other medical providers are very important. However, there is a significant moral difference between the usual understanding of rights of conscience in which physicians refuse to engage in actions they believe to be inherently morally wrong. A physician who refuses to be involved in abortion or euthanasia does so because he or she believes that such actions are inherently wrong. The physicians in this case do not believe that treating an infant with a ventilator is an inherently wrong action. It is quite likely that these same physicians recommended the use of the ventilator and encouraged Tinslee’s mother to see this a treatment that was good for Tinslee and which they could make as painless and comfortable for her as possible. The decision to stop the treatment which they once recommended is a judgment based on their values that the burden of the treatment has become more than the benefit of the treatment. That is significantly different from a refusal to participate in a treatment which the physician believes to be inherently wrong. The burden of being on the ventilator is no different than it was when it was started. The ventilator continues to be effective in performing its function of supporting respiration. What has changed in the physicians’ minds is whether the benefit of extending this child’s life is worthwhile. That is a decision that should be made based on the values of her mother, not the values of the physicians.

An argument for heritable genome editing

Some weeks ago, a utilitarian perspective in favor of heritable genome editing was published (purchase or subscription required to read).  In it, the author, Kevin Smith of Abertay University in the United Kingdom, begins with a general defense of utilitarianism, the ethical philosophy that what is morally good is what produces the greatest good for the greatest number, as opposed to alternative ways of judging that invoke duty, principles, God’s law, or virtues.  In the process, he comments that ethicists who do not consider themselves utilitarian often employ risk-benefit or cost-benefit analyses in making particular judgments.  “We’re all utilitarians now,” as it were.   Smith then proceeds to make a case by a utilitarian, for utilitarians, in favor of pursuing heritable genome editing.  Key points:

  • Genetic editing will technically improve, reducing if not eliminating risks and broadening the ability not only to eliminate genetic disease but also to enhance complex genetic traits and correct mutations that increase risk for disease.  He envisions a day when correcting gene editing errors will readily be reversible by further editing (an “undo” function, as it were).  Consequently, we should anticipate that heritable genome editing will provide many benefits but few harms.
  • Early adoption of technologies is generally beneficial in the end, as, he argues, was the case with IVF, because to delay is to put off the benefits.  In the case of heritable genome editing, we won’t know how well it works without forging ahead.  Nonetheless, the editing of embryos leading to the birth of the edited twins in China in late 2018 was a bit reckless, and the reaction threatens to regrettably and unnecessarily retard progress.
  • Preimplantation genetic diagnosis (PGD) is not a preferable option because some genetic diseases cannot be avoided with PGD (i.e., if all IVF embryos are affected, so there is no unaffected embryo to select) and, more importantly, any additional risk from heritable genome editing is likely to be limited to a relatively few cases in the relative short term, while ultimately yielding much larger benefits to a larger number, justifying the greater risk to some.  (This, I suppose, could be considered crudely analogous to the accepted human research principle that risks to subjects may be acceptable if potential benefits to society—e.g., in development of a candidate new medicine—are possibly greater.  It’s OK for some people to get sick from too high a dose of an experimental drug, for example.)
  • Heritable genome editing should be used soon, because doing so will hasten the first celebrated successes, which will supercharge public support to expand the use of the technology.
  • Adoption is an important alternative, because it increases the happiness of an existing individual, the adoptee, instead of the more speculative prospect of a healthy new person without disease from a mishap from the gene editing.  But if a couple chooses not to adopt, preferring to have a genetically-related offspring, they should not be denied the opportunity if one is possibly available.
  • In general, more new people means more overall happiness for the human race in general, because the new people are more likely to be happy and not, and at least not diminish the happiness of other existing people in the progress.  (This seems to take for granted that heritable genome editing will not cause a detrimental population explosion—which, indeed, seems pretty unlikely.)
  • Having a child produces more happiness for all involved than not having one.
  • Having a genetically related child is better than having one that is partly unrelated, as would be the case with a child conceived using sperm or egg donation from a donor without a genetic disease to be avoided.
  • In cases where a couple simply could not avoid their naturally-conceived child having a bad genetic disease, to go ahead and conceive such a child would entail suffering for the child and parents, and the moral benefits of suffering are overrated.
  • The upside of heritable genome editing—i.e., the potential for human enhancement—is huge.

Many of these points are reasonable as far as they go.  Where this sort of argument leaves one unsatisfied is in the high optimism for technical success without unintended consequences; conceiving the risk-benefit relationship as if it can readily be calculated with confidence; disregard for broad consequences for how we understand ourselves, our begetting, and how we should receive fellow humans who are less than fully whole, physically; and, in some cases, the potential for alternative treatments.

Smith rejects a “precautionary” approach as too timid, but still concludes that maybe we should wait a bit, for the reaction to the Chinese twins’ birth to wear off and for scientist to be able to marshal further their technical case. 

Discussion to follow in future posts.