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 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.

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.

Who gets the Ventilator?

Anyone watching the news coverage of the COVID-19 pandemic here in the US during the past week could not have avoided considering this generic question. Some are living in regions where the question is much more personalized – “If there really are not enough to go around, will I get a ventilator if I need one?” Ethically allocating a scarce resource such as a ventilator during a global pandemic caused by a virus that can strike anyone and potentially cause death by respiratory failure is clearly one of the great bioethical challenges facing us. What follows is a brief, blog length, discussion of some of the pertinent concerns followed by links to more detailed exploration, written by bioethicists who have considered these issues in greater detail.

In the last blog entry, Joy Riley touched on the issue of one individual refusing a ventilator for the expressed benefit of others. While the whole story was more complex, the facts do remind us that treatment (and therefore utilization of scarce resources) should start by determining what the patient actually wants and whether the resource in question can have any meaningful benefit in that patient’s care. Jon Holmund began the discussion of what processes and protocols may ethically change during the pandemic with resource scarcity and what others should remain in force.

My last entry touched on the four Principles of Bioethics (Autonomy, Justice, Beneficence and non-Maleficence) as a simple outline. The Principles are often referenced in guiding the one-to-one ethical relationship between the doctor and patient. Limited resource allocation affecting a population as a whole would seem to demand a different or additional ethical framework. Utilitarianism is often used in this context since it is an ethical system that desires to maximize some good (happiness, pleasure, health), theoretically scalable by maximizing that good for a whole population. Some problems with utilitarianism are determining exactly what that good should be as a population and agreeing on exactly how to measure it.

In the issue of the COVID-19 pandemic, one utility is maximizing access to ventilators or, perhaps more broadly, maximizing the number of lives saved. This sounds promising. But what happens when two people (or more) need, and want, the same ventilator at the same time. How do you determine who gets the ventilator? Utilitarianism does not necessarily answer this question or the many following: Is it “first come-first served”? Do we draw straws (a lottery)? Is it the person who can “pay the highest price”? The person who “needs it immediately”? The person who only needs it for a short time (so that the ventilator can be used again to help someone else)? Does the ventilator go to the person who is responsible for saving other lives (such as a nurse, food supplier, ventilator maker – and if so, how does one prioritize among these)? Assuming these decisions can initially be made, can we change that decision later? For instance, if someone has been using the ventilator for a (long) while, is it ever ethical to remove that person so that someone else “has a chance”? If not, is it ethical to somehow prevent them from being selected for ventilator access in the first place?

None of the preceding questions are easily answered, particularly in the heat of the moment, and are therefore best answered, if they can be, at the outset. Once determined, they should be made public as transparent guidelines. If agreeable to all involved, then applicable equally to all involved, and implemented fairly as specifically outlined. No guidelines will be exhaustively perfect in their ability to stratify and prioritize access to save the lives of all involved – the best that may be accomplished is to save the greatest number of lives until the scarcity of ventilators is resolved or the pandemic has run its course.

Agreeing on an ethically acceptable method to allocate scarce resources in a theoretical pandemic is very difficult, even in the abstract; actually implementing such a plan during the emergency of the real pandemic warrants nothing short of divine guidance.

For those interested in reading further and/or deeper, the Center for Bioethics and Human Dignity has an excellent resource page with multiple links to other references. I found Dr. John Kilner’s “Criteria for the Allocation of Limited Healthcare Resources” very helpful.

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.

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.

Twenty-first Century Divorce: Who Gets Custody of the Embryos?

A recent CBS news story provides yet another example of the technology and legal cart pulling the ethical horse.

In short, in 2014, an Arizona couple used in vitro fertilization (IVF) to preserve her eggs after she learned she had breast cancer and would require chemotherapy. The woman’s then boyfriend originally declined to be the sperm donor but later agreed when the woman, perhaps desperate to preserve her eggs, considered using a former boyfriend as the donor (fertilized eggs survive cryogenic preservation far better than unfertilized eggs). The couple executed a contractual agreement, provided by the clinic, as to the disposition of the frozen embryos (“their joint property”) should their relationship divorce or dissolve prior to implantation. They married several days later, underwent IVF yielding 7 embryos, which were cryogenically preserved and the woman underwent successful chemotherapy.

Unfortunately, after 2 years of marriage but prior to implantation, the husband filed for divorce. The pre-IVF contract stipulated that both husband and wife had to mutually agree on the disposition of the embryos – if not, they agreed a court could decide the embryos’ fate. Recently, the Arizona Supreme Court determined that the embryos should be put up for adoption, siding in one sense with the ex-husband to prevent the ex-wife from “using” the embryos. The decision upset many in Arizona to the point where the Arizona Legislature enacted a law to award the frozen embryos, in the future cases of divorce, to the spouse who “intends to use them to have a baby.” The new law will not benefit the ex-wife so, at the time of this blog entry, she was considering whether or not to appeal her case to the US Supreme Court.

There is a lot here to consider. I want to focus on just a few issues. First, I left scare quotes around several of the terms used in this case. The frozen embryos are indeed legally “joint property”, much like children in other cases of divorce. The couple could have just as easily checked the box on the contract to select “Destroy the Embryos” in case of their divorce. This same choice is one that many married (and unmarried) couples make regularly in IVF absent divorce when deciding the fate of unwanted or unused embryos following successful pregnancy and birth from prior IVF cycles. So asking a court to decide the fate of the frozen embryos is similar to children of divorced couples (though their “destruction” is not currently an option.)

“Using the embryos” is terminology that further emphasizes the commodification of frozen embryos as we consider them as a convenience for, or, for the sole benefit of, the parent(s). While I can empathize with the ex-wife’s desire to preserve her ability to have future children in the face of cancer treatment, her choice of an ambivalent (then) boyfriend over an ex-boyfriend as the father of her future children has proven disappointing, if not disastrous, for her in the present. It is harder for me to grasp the rationale of the ex-husband, who, though previously agreeing to father his ex-wife’s children, now (vindictively?) refuses to allow her to mother them, particularly since (continuing with my horse analogy) that fatherhood horse left the barn years ago.

As we allegedly advance our technical and scientific skills by increasing the various situations in which women can become pregnant, we are demanding more legal decisions when these new situations cause conflict rather than discussing and agreeing beforehand whether or not to permit these situations from occurring in the first place.

Is personhood a biased term?

In ethics it is very important to communicate with clearly defined terms. This becomes especially important when dealing with a very divisive topic such as abortion. Fifty years ago, in the ethical debates about abortion, some expressed concern about how the term human being was used by those who claimed that abortion was wrong. The basic argument for the position that abortion was wrong went like this: It is wrong to kill an innocent human being. A human fetus is an innocent human being. Abortion involves killing a human fetus. Therefore, abortion is wrong. It was claimed that this was not a proper argument because the term human being meant different things in two of the premises. In the first premise human being means an individual with full moral status, but in the second premise human being is used in its biological sense. The claim was made that not everyone believes that every member of the human species has full moral status, so we should not use the term human being in this argument. It was proposed that everyone involved in the discussion abortion use the term person to represent those individuals who have full moral status. Since this discussion in the 1970s the term person has been used in the ethics literature as a technical term which is defined as those individuals who have full moral status.

However, it seems to me that the term person has the same problem as the term human being. In common usage it means other things than individuals with full moral status. It is commonly used to refer to adult human beings although children are sometimes included in who we think of as persons. It many times means those with whom we communicate and have a relationship. In legal terms it means something different. It refers to those who have certain rights and responsibilities under the law. It involves those who can be held accountable for their actions and those who can do such things as owning property and entering into contracts. The legal definition a person can include entities that are not human beings such as corporations. This becomes a problem when we look at how we define who is a person. Instead of looking at how we should understand who has full moral status, we tend to look at who fits with how we commonly use the term person. The Supreme Court in Roe v. Wade stated that “the unborn have never been recognized in the law as persons in the whole sense,” but that does not necessarily mean that the unborn do not have full moral status. Mary Ann Warren asserted that it is those who we consider to be persons rather than those who are genetic human beings who make up the “set of beings with full and equal moral rights.” However, she defined personhood based on cognitive capacities that are characteristic of fully healthy adult human beings who are moral agents and leaves out many, such as infants and those with cognitive disabilities, who we would commonly consider to have full moral status.

Using the terms human or human being to represent those who have full moral status assumes that all biological human beings have full moral status. Using the term person to represent those who have full moral status assumes that having full moral status is based on something other than being a biological human being. But that is the question. What we are trying to decide is whether it is correct to decide who has full moral status based on being a member of the biological category of beings we call human beings or based on having certain cognitive attributes or capacities. Since both terms essentially beg the question, it would be better to use neither. In discussing whether a fetus or some other individual has full moral status we need to focus on how we decide who has full moral status and recognize that using the terms human being or person in a moral sense represent positions on that issue.

Autonomy of Access vs. Autonomy of Decision Making in Opioid Addiction

A recent Perspective in The NEJM by Dr. Amy Caruso Brown discussed the ethics consultation involved in treating addiction as a terminal disease. Since the article is behind a subscription firewall, I will briefly summarize the case and some of the ethical problems outlined by Dr. Brown. The focus of this blog is to ask the limited question as to whether or not there is sufficient patient autonomy to make decisions in an addiction situation described as terminal if, as Dr. Brown claims, society has failed to provide sufficient access to and services for patients with chronic addiction and/or mental health problems associated with similar levels of addiction.

Dr. Brown’s patient, Ms. A, was an unemployed, homeless woman who had a history of chronic opioid use/abuse and had failed multiple impatient rehabilitation, methadone maintenance and buprenorphine treatment programs. She was hospitalized for septic shock secondary to endocarditis, which had damaged two heart valves to such a degree that she was not considered healthy enough to survive surgery to correct the problem. Her only relative, a brother, who had recently finally cut ties with his sister to protect exposing his children to her illness and habits, agreed to a do-not-resuscitate order. To the surprise of her treating staff, her condition stabilized to the point where the cardiothoracic surgeon agreed to operate. She declined, wanting to be discharged so she could seek morphine to self-treat the intractable chest pain. She fired her attending physician as he made the ethics consultation referral questioning her decision-making capacity.

Dr. Brown nicely outlines the particular issues of legal capacity requirements required in New York and the limited capacity that surrogates have if they we not previously designated as such. Dr. Brown also discussed whether or not Ms. A met the criteria for terminal illness, specifically whether or not ongoing chronic opioid addiction, in the face of now severe cardiac compromise, would be expected to cause death within 6 months. Dr. Brown maintained that Ms. A was lucid and capable to make informed decisions, which were that she “simply wanted to go home, or to a hospice facility, and die peacefully.” Dr. Brown did not find her depressed or emotionally compromised, though quoted her as saying “I’m done. I’m ready to be done. I’ve fought long enough” and described her as “exhausted and grieving”. Dr. Brown believed Ms. A’s “decisional capacity was clear.”

Finally, Dr. Brown argued that society had failed Ms. A by not facilitating access to a treatment program that “included medication for opioid use disorder (OUD) – preferably initiated in an inpatient setting and coupled with ongoing trauma-informed mental health care and various social supports – [in the absence of which Ms. A] would almost certainly have a relapse”, further making it likely she would die within 6 months. Though the article noted Ms. A had previously failed inpatient rehabilitation, methadone maintenance and buprenorphine, it was not stated how coordinated or integrated the previous programs were. Was the proposed program new or simply a second (or third) chance through a similar program? Thankfully, Ms. A decided to accept palliative terminal care, which resolved her homeless situation, as it would be provided at an inpatient facility.

What if Ms. A had declined inpatient palliative care? Dr. Brown made a strong case that Ms. A’s social situation (poor, homelessness, mental health history of abuse and chronic opioid dependence/abuse) limited access to an appropriate treatment program for her problems, likely the only one with any expectation of success, however limited. Even if we grant that Ms. A was indeed terminal and had clear decision-making ability not compromised by depression, ongoing opioid dependence and other mental health factors, did her social situation really allow her to be autonomous in decision making? Said differently, how can we consider her autonomous for decision-making when she apparently lacks autonomy for access to her treatment? Further, how much support can an individual demand or expect from society and still be considered autonomous? I have touched on a similar issue in this blog previously with regard to serial pregnancy in opioid addicted women, asking when should the risks to the children (and social and financial burden to society) supersede the mother’s autonomy for having more children?

We need to improve access to treatment and support for mental health in general and opioid treatment in particular. This will likely include further discussion regarding the level of autonomy of those needing that treatment and support.