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.

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 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.

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.

Scientific Validity vs. Bioethical Violation?

In a previous blog entry, Dr. Riley covered the 30 December 2019 conviction of He Jiankui, the Chinese scientist who allegedly created the first genetically altered human babies born in November 2018, to three years in prison for “illegal medical practices”. His criminal conviction is somewhat surprising to me because I believe Dr. He must have received at least initial support from the Chinese government for his human genetic experimentation, particularly since he was allowed to travel to Hong Kong in late 2018 and make public a portion of his research. My surprise is that the almost universal uproar about the bioethical violations in this case can (at least presently) make even the Chinese government admit that a line has been crossed that warrants public condemnation and punishment of those involved. Though the crime cited was crossing a thinner bioethical line (lying on the informed consent about the risks of genetic engineering to the babies) rather than the fuller bioethical line (the actual risks of genetic engineering to the babies and humanity in general), a bioethical crime was committed.

There are other aspects of this story that need our bioethical consideration. Antonio Regalado in a recent Technology Review, describes the still circuitous path Dr. He’s research has taken en route to ANY publication. In fact, it appears that Technology Review is the first publication to make any portion of the original manuscript public (there is a link within the link provided above of excerpts of Dr. He’s manuscript). I cannot do justice to Mr Regalado’s sleuthful efforts at piecing together this story (it defies a simple summary) and encourage those interested to read his account in the link above.

Regalado reports that Dr. Howard Bauchner, editor-in-chief at JAMA, was given access to the original manuscript just days after the 2018 Hong Kong conference. Regalado found Dr. Bauchner to be generally supportive of genetic editing of embryos:

“I think it’s inevitable that it will move ahead, and I think it should move ahead… Oftentimes early scientific breakthroughs [such as organ transplantation and IVF] are seen as unethical, and then over time that changes, [as the technologies prove successful].”

In fact, a main dilemma for Bauchner remains the following: “If someone thinks it’s scientifically valid but not ethical, does that mean the study will stay in the shadows?…It’s such an interesting question.”

An interesting question indeed. One online repository of pre-published scientific papers called bioRxiv rejected the manuscript, likening the manuscript to a paper it might have received from Dr. Josef Mengele, the infamous Nazi death camp doctor. One might therefore wonder why Technology Review has published any portion of the manuscript. They are not a scientific journal per se, with strict peer review to validate the scientific method and results. They are a publisher of scientific news, and Dr. He’s experiment, regardless of it’s many bioethical failures, is certainly scientific news. Technology Review offers a more in-depth opinion as to why they believe it is appropriate to make the manuscript public.

Back to Dr. Bauchner’s interesting question. Does he mean by scientific validity that Dr. He’s experiment (may have) accurately edited the section of human genome that Dr. He claimed and therefore the scientific community should be able to learn from that? Even so, it still seems to me that that Dr. Bauchner is putting the scientific cart before the bioethical horse. Shouldn’t we decide whether it is right to edit the human genome in the first place before worrying about the validity of the technique to edit that genome?

Sociopaths in Medical School

The NEJM recently had an interesting article calling on medical schools to do a better job identifying students who exhibit “unprofessional behavior” before allowing them to graduate. The link for that article is HERE (subscription required). While admitting that it was difficult to consistently and reliably identify such students, the authors claimed that every medical school staff annually could likely identify one or two students “whom they would not allow to care for their family.” The article goes on to describe the barriers that prevent medical schools from accurately identifying unethical behavior in their students and some of the problems associated with trying to use the limited data that is available to delay or even prevent such a student from graduating medical school.

Going so far as to label students with unethical behavior as sociopaths is admittedly hyperbole on my part for the sake of rhetoric. In my defense, the article does touch upon the fact that there are a few physicians, presumably in every class, who commit “criminal or malicious acts”. The authors then go on to ask how we might identify these individuals before they behave “unprofessionally”, ideally before they graduate medical school. I presently have no doubt that anyone who has ever attended medical school can think of at least one person in their graduating class whom they would prevent from treating their immediate family.

I heard an excellent lecture on this issue more than 15 years ago by Dr. John Patrick, former Associate Professor of Clinical Nutrition at the University of Ottawa, who now speaks worldwide on issues of medical ethics, culture, public policy and the integration of faith and science. In speaking to a group of medical students about the need for transcendence in Hippocratic Medicine in a lecture entitled “Meaning and Purpose in Medicine”, he says about the sociopaths in their midst (beginning at 38:25 in the audio):

“…you can name them in your class already, you know who they are. You could tell me in your class the two or three people who are likely to lose their licenses for immoral or bad behavior in the future. The faculty never have a clue. You know. But you have already left Christian ethics, and loyalty dominates your class, so you don’t tell us. We find out 5 or 6 years later when they lose their license. And nothing on their university transcripts but all the students are not surprised.”

I originally wondered about the veracity of this claim so, for several years, I conducted a simple survey of the first year medical students in our local medical school. For a period of time, I was the very first clinical lecturer the students heard as they prepared for their first exam on the anatomy of the spine, just 10 days after beginning medical school. At the beginning of the lecture, I asked the students to look at me directly and, without speaking or glancing at their fellow classmates, answer the following question in their head: “After being together for the past 10 days, have any of you met at least one person in your first year class to whom you would not trust to care for someone you loved?” Invariably, over half of the class smiled, many while quickly glancing in the direction of the same one or two potential sociopaths in their class.

Why is this bioethically important? Dr. Patrick contends, and I suspect many of the readers of this blog agree, while the study of medicine is a scientific endeavor, focused on the accumulation of scientific knowledge, the practice of medicine is mainly a moral endeavor. Physicians are trying to work with their patients to help them do what they “ought” to do, as agreed upon by both the physician and patient. Such an endeavor demands mutual respect and trust so there is no place for unethical behavior on the part of the physician caring for a vulnerable patient.

Sadly, as both Dr. Patrick and the authors of the recent NEJM point out, while we are fairly adept at selecting medical students who can handle the academic rigor and have sufficient self-discipline to succeed in medical school from a knowledge standpoint, we remain woefully inadequate at assessing the ethical character of those same students to make sure they have the necessary moral integrity to actually practice medicine.

Unless that can be remedied, we should expect the continued gradual replacement of rich, lifelong, covenantal doctor-patient relationships with sterile, limited, contractural provider-client partnerships.

[I encourage readers to follow the link to Dr. Patrick’s website for a wealth of audio lectures on bioethics, culture and the integration of faith and science. Begin with the above link for “Meaning and Purpose in Medicine”]

Determining Fairness in Healthcare

The New England Journal of Medicine (NEJM) had a recent Perspective on proposed bill H.R. 3 aimed at reducing federal spending on prescription drugs. A main component in the bill authorizes the Secretary of Health and Human Services to establish a “Fair Price Negotiation Program” that, beginning in 2023, would permit the secretary to negotiate with pharmaceutical companies the price paid by the federal government on 25 drugs each year. The article provides a broad overview of the bill as it discusses some of the economic pros and cons as well as the political back and forth that would be required to allow this bill to become law. The link is behind a subscription firewall but provides an option for free access to a limited number of articles with registration.

Call me cynical but anytime I see the word “fair” associated with a bill in Congress, I immediately wonder “for whom?” The article is quick to point out that the “negotiation” effectively means “price regulation and severe penalty for noncompliance” by the drug manufacturers. The article describes in general the method that will be used to set the maximum price of a given drug. How or why did Congress determine that method as the best for determining the Fair Price? Also, not all drugs will be included in the group subjected to negotiation. If it is good or fair (as determined by Congress) for drug prices to be determined/set/negotiated by our government, should not all drugs be negotiated similarly so they are fairly priced?

Bills like H.R. 3 are part of the larger discussion of what I call the ultimate “Rights vs. Obligations” in the delivery of healthcare. If healthcare is a human right, who is obliged to provide that right? In the present case of medication pricing, if the present cost of a drug is too high, who is obliged to offset that cost (read – pay the difference between “too high” and “fair”)? The provision of healthcare, generally, and the creation, testing and production of medications, specifically, have real costs. Are these costs fair? Who will pay these costs? The patient? The doctor? The hospital? The pharmaceutical industry? Should healthcare be for-profit? If so, how much profit? Should healthcare become a utility with strict(er) oversight? Can the market decide a fair cost or price? Can a utility board? Can our elected representatives? How about a group of really (and I mean really) smart, unelected bureaucrats?

Thoughtful answers to any one of these questions should be submitted immediately to your local congressperson. Collectively, they are presently the ones determining fairness (in a real bioethical sense) in healthcare.

Assisted Suicide and Disability

On October 9th, the National Council on Disability (NCD) released a report on the dangers of assisted suicide laws as they relate to persons with disabilities. The report provides a nice background on the history and justification of the Council’s position against assisted suicide as far back as 1997. The present report, available here, provides an update on its rationale for its continued opposition to assisted suicide laws. The report, and its references, provide an excellent resource for those of us who argue against assisted suicide regardless of the presence or absence of a disability.

Eight states and the District of Columbia have legalized assisted suicide in some form since Oregon led the way in 1994. Additionally, while lacking a specific assisted suicide statute, a state supreme court decision in Montana in 2009 is believed to provide a defense for physicians who practice assisted suicide. Oregon has provided the statutory framework for existing assisted suicide laws as well as proposed or pending legislation in states moving in this direction. As a result, every state where assisted suicide is legal claims that a primary need for the law is to preserve a person’s dignity, a claim that NCD finds particularly troublesome for people with disability:

The idea that hastened death is a pathway to dignity for people facing physical decline reveals the public’s extreme disparagement of functional limitations and a perception that “dignity” is not possible for people who rely on supports, technology, or caregivers to be independent or alive. Many hold the attitude that a person with a disability may be better off dead than alive.

Assisted suicide is often the cheapest “treatment” for many chronic medical problems affecting those with disability, a fact not lost on those responsible for state Medicaid budgets. NCD provided example after example of patients in Oregon who were denied treatment for their chronic or terminal medical care only to be offered coverage for assisted suicide within the same denial letter. Such crass efficiency was too much even for California, who in 2015, passed a law correcting this behavior: “[a]ny [insurance carrier] communication shall not include both the denial of treatment and information as to the availability of aid-in-dying drug coverage.” Many patients or their physicians eventually were provided the information on assisted suicide by the very same insurance carrier in a follow-up phone call.

Another major issue discussed within the NCD report was the relationship of depression and suicidal ideation in patients with a new disability:

Research overwhelmingly shows that people with new disabilities frequently go through initial despondency and suicidal feelings, but later adapt well and find great satisfaction in their lives. However, adaptation takes considerably longer than the mere 15-day waiting period required by Oregon-model assisted suicide laws.

Perhaps the most persistent concern by NCD since 1997 continues to be “the major gap between informing the patient of alternative options [such as palliative care programs and long term-term services/supports] and those alternatives actually being available and provided.” All statutes legalizing assisted suicide include provisions that require a full explanation of all of the programs, resources, and options available to assist the patient if he or she does not decide to pursue suicide. However:

Many people with disabilities find this to be a very shallow promise when they know that all too often the programs are too few, the resources are too limited, and the options . . . often nonexistent.

The concerns articulated in the NCD report warning of the dangers of assisted suicide apply just as forcefully for those without disability. We should join their efforts to educate law makers on a better way forward without assisted suicide.

“Why did you make me this way?!”

Recently, Jon Holmlund brought us up to date on an effort in Russia to proceed with CRISPR gene editing aimed at eliminating deafness. Coincidently, a recent MedPage article was posted regarding the ethics of using pre-implantation genetic diagnosis and IVF to purposefully select FOR an embryo with genetic deafness for a couple, both of whom were deaf. Both links discuss some of the ethical problems with using medical reproductive and genetic technology for these purposes. While we presently lack the ability to use polygene scoring to accurately “produce” the babies we want, I want to use the remainder of today’s blog to consider what obligations, if any, a genetic engineer (or parents that use their skills) may have toward future children designed using these growing array of genetic technologies.

Deafness seems to me to be rather curious in that it is considered either a serious disability or a desirable trait, depending upon your cultural worldview. No one in any culture would purposefully select for cystic fibrosis or Tay-Sachs diseases for their child. In fact, most want to use medical reproductive and genetic technologies to eliminate these diseases. On the other end of the genetic trait spectrum, some parents want to use these same technologies to purposefully select for more trivial traits for their children – hair and eye color, for instance. Given the triviality of these traits, I hear no one mounting an effort to genetically eliminate any particular hair and eye color. Perhaps I am living a sheltered life?

Nonetheless, with regard to deafness, prior to the promises of our new reproductive technologies, if you were born deaf and did not like it, you could only shake your fist at God or Nature. Now (or very soon), you can shake your fist directly at another human, such as your regional genetic engineer (or your parents who purposefully used her technological skills) and demand a direct answer as to why they purposefully made (or did not make) you deaf. Maybe this angst will be more widespread for the many more trivial traits such as eye or hair color rather than something more significant like deafness?

Building a child is about to become much harder for parents as they become directly responsible for both interior (genetic illnesses) and exterior (hair and eye color) design issues.

“Why DID you make me this way?!”

“Why did YOU make me this way?!”

I wonder how many genetic designers (or the parents that will ultimately bear the direct responsibility for having used the technology) really want that type of responsibility?

Is there already fine print in PGD-IVF contracts holding the doctors/scientists/geneticists harmless for the choices the parents make?

I can’t wait for the late night TV commercials: “Were you born with brown eyes and feel emotionally scarred because you have always wanted blue? Call our law offices as you may be entitled to financial compensation …”