Ethics of Coordinating Organ Transplantation with Ventilator Cessation in Terminal ALS

The decision not to receive further medical care in the face of a terminal disease is one that is generally honored if made by a fully informed, competent adult in the absence of outside coercion. Decisions to discontinue life-assisting devices already in place with that terminal disease, such as ventilators, feeding tubes and cardiac pacemakers, begin to complicate the decision as the process moves beyond a single autonomous negative decision by the patient to refuse further care to one that often requires other individuals to positively act to accomplish the wishes of the patient in question. In addition, honest disagreements can result in determining whether removing life-assisting devices simply allows death to occur naturally or causes death directly. The timing of the decision to remove a life-assisting device can become more ethically complicated when the individual with the terminal disease wishes to donate his or her organs.

Such was the case with Dave Adox, when at age 42, he was diagnosed with ALS or Lou Gehrig’s disease, a terminal neuromuscular disease that causes progressive muscular weakness resulting in death, usually by respiratory failure, in 2 to 5 years. Within 6 months he was quadriplegic and completely dependent upon his family for all care. He eventually required a ventilator and was able to communicate only by eye movements. By age 44, his eye movements were becoming limited, making it difficult to communicate. He decided that he did not wish to continue to use the ventilator to prolong his life if he could no longer communicate. He had the support of his family and physicians. He had one other goal prior to his death – He wanted to donate his organs.

The problem was that Dave Adox would have to be admitted to a hospital to be able to donate his organs immediately after he turned off his ventilator. He received the support of his treating physician, the local hospital’s palliative care team and the local hospital’s ethics committee. He ran into a roadblock with the hospital’s attorneys, who argued that the process was uncomfortably close to assisted suicide. Within weeks, Mr. Adox was able to find another hospital that permitted his admission to their palliative care floor, assisted with the organ donation process, and allowed him to turn off his ventilator.

Ignoring the organ donation issue for the moment, Mr. Adox’s decision to turn off his ventilator in the face of his irreversibly deteriorating neuromuscular condition seems reasonable to me. He was making an informed, uncoerced decision to remove his ventilator as his worsening eye movements threatened his ability to communicate, a situation he considered too burdensome to warrant continued use of the ventilator. The use of a ventilator in the treatment of ALS is never mandatory. Elective use of a ventilator should always include the option to discontinue its use when an individual determines that its further use creates a burden they no longer wish to bear. Continued use of the ventilator in Mr. Adox’s case would not have prevented further deterioration of his ALS. In fact, continued use of the ventilator would likely have allowed him to live long enough to become “locked-in”, a condition where a person is alive, alert and aware, but unable to meaningfully communicate that awareness or one’s future needs to the outside world. With the impending loss of eye movements, Mr. Adox was approaching the “locked-in” state. Discontinuing the ventilator allowed the ALS-induced muscular weakness to cause his natural death via respiratory failure.

I believe the foregoing to be a distinctly different category from assisted suicide where the individual requires the addition of medication to suppress his breathing or terminate his heart rhythm to cause death rather than the death resulting from the disease process directly. That is, the process of the assisted suicide is the proximate cause of death, not the background disease. I appreciate that others may view having ALS at any stage as a burden too much to bear but I am unwilling to act to cause their death prematurely distinct from the disease process itself (See LINK for current study of ALS physicians and their views on assisted suicide – article requires subscription).

If you agree with me that Mr. Adox ought to be able to decide that he had reached a point that he wished to turn off his ventilator, does his decision to donate his organs change this situation to assisted suicide, as was the concern of the local hospital’s legal team? I do not believe it does. He was not turning off his ventilator “just so” he could donate his organs but rather because he had reached a point where continued ventilator use was a burden he no longer wished to bear. The organ donation was not the primary intent of discontinuing the ventilator. I view this in a manner similar to the intention of using pain medication in terminal cancer care: the intention of palliative medication is to provide pain relief during the dying process not cause the dying process, though it can. The intention of discontinuing the ventilator is to allow ALS to cause death naturally not provide organs for transplantation, though it can.

Should it?

CGI Turing Test

[Star Wars fans spoiler alert: The following contains potential story information from “Rogue One: A Star Wars Story”, the Star Wars Episode IV prequel]

I confess that I am a Stars Wars geek in particular and a science fiction movie buff in general. Like many, I am old enough to have seen the first Star Wars movie at its 1977 release, before it was re-indexed as “Episode IV: A New Hope”. The computer generated imagery or CGI special effects in that movie revolutionized the science fiction genre. It is now commonplace to use CGI to accomplish all manner of special effects, transporting moviegoers into all sorts of fantastic virtual worlds and virtual characters that appear, frankly, real. Rogue One has taken CGI up to the next level with one particular character such that I would argue that Rogue One has passed what I am calling the CGI Turing Test.

The original Turing test was described by Alan Turing, a famous British mathematician who designed and built a mechanical computer in the 1940s that successfully decoded the Nazi Enigma machine, a previous unbreakable encoding device that had thwarted Allied efforts to eavesdrop on the Nazi military communications. The Turing test is commonly misconstrued as a test of a computer’s (artificial) intelligence, which it is not. It is actually a test to determine whether a computer can imitate a human well enough to convince an actual human that it (the computer) is human. This test was a variant of a party game known as the “Imitation Game” in which a man (person A) and a woman (person B) would try to convince a third party, called the interrogator (person C) who was in a separate room, that each was the other. The Turing test substitutes a computer for person A.

Rogue One plays a similar game. There is a character in the Star Wars films named Grand Moff Tarkin, a very evil general in the Empire played by British actor Peter Cushing. Cushing debuted his Grand Moff Tarkin character in the original 1977 Star Wars movie. He is again seen reprising this role in the new 2016 Rogue One installment. I thought he was as awesome as ever. Except that he wasn’t. Peter Cushing died 22 years ago in 1994. I promise if you watch Rogue One and put yourself in the role of person C, the interrogator, you will be convinced that the CGI Peter Cushing (person A) is the real Peter Cushing (person B). So, the Academy Award® for Best Actor in a supporting role goes to…a computer at Industrial Light & Magic?

What has this to do with bioethics in general or artificial intelligence in particular? Perhaps not much. The futurist Ray Kurzweil argued in his book “The Singularity is near” that a machine will pass the Turing test in 2029 and perhaps this will come true, though his previous predictions have been called into question. In keeping with this AI/Turing Test theme, I gave the gift of “Google Home” and “Alexa” to different family members this Christmas. I was pleasantly amazed by the speech recognition of both systems and fully expect the technology to rapidly improve. Despite this, the forgoing discussion, and the knowledge that Turing and Kurzweil both disagree with me, I remain convinced that our ability to create a computer to imitate a human, the Imago Hominis, so to speak, will always fall far short of His ability to create a human to reflect Himself, the Imago Dei.

As the interrogator, what do you think?

The 14-day rule: Time to double down?

The “world’s leading scientists” gathered at University College London on 7 December 2016 to explore extending the 14-day limit on embryo experimentation from 14 days to 28 days. Presently the consensus of that meeting is not known. The Guardian has published a nice summary of the background and future implications of the issue (link HERE). Jon Holmlund offered his comments in this blog back in May when researchers artificially grew human embryos to 13 days gestation. Since this issue is back in the news, a few additional thoughts are offered below.

Space does not permit a detailed history of the details of the discussion behind the original 14-day rule endorsed by the Warnock Committee in the UK (see HERE for one such extended summary). The original limit was arbitrary but coincided with the development in the embryo of the primitive streak, a precursor to the nervous system, such that experimentation on an embryo before this stage was believed to eliminate the possibility of that embryo experiencing pain. The implementation of the 14-day rule essentially permitted experimentation to proceed resulting in the successful development of IVF.

Regardless of the ethics, the 14-day rule has been a hard barrier scientifically until just recently. Just because we can breach the 14-day barrier, why go beyond? Allowing experimentation on the embryo out to 28 days would allow scientists to learn about the process of gastrulation, the process that lays down the body plan and where the three tissue layers (ectoderm, mesoderm and endoderm) begin to subspecialize. If we have ethically permitted experimentation on embryos up to 14 days gestation, shouldn’t we just nudge it out a little further?

To quote Jon Holmlund: “In the name of God, forbear!” Interestingly, for different reasons, Mary Warnock agrees with him. Per the Guardian article, she worries:” If we raise the limit, objectors could argue that the 14-day rule has remained intact simply because no researcher had the technique to keep an embryo alive for so long, and that now one has been discovered the rush down the slippery slope will follow. They will say: ‘We always knew that the slippery slope would prove itself.’”

Experimentation on a human embryo at 14 days of gestation is still experimentation on a human being made in the image of God. Perhaps the upcoming debate on extending the 14-day rule will actually result in Warnock’s fear, that we agree that the original 14-day limit was indeed too long to be slipping and sliding?

Pre-Existing Conditions 2.0

Back in 2005, Dr. Ezekiel Emanuel co-wrote an article with Dr. Victor Fuchs entitled “Getting Covered”, where the authors described three factors necessary for major healthcare reform: the problem attracts political attention; major players agree upon a refined and feasible solution; and a transforming political event occurs. Their criteria were met with the election of Barack Obama and a Democrat-controlled Congress in 2008, resulting in Obamacare. Their criteria have been met again with the election of Donald Trump and what will be a Republican-controlled Congress (and perhaps future right-leaning Supreme Court). The result is yet to be determined.

Dr. Emanuel has lately been making the rounds on the various networks performing what some might consider the Sisyphean task of defending large portions of Obamacare against the Republican future. In doing so, he points out that several facets of Obamacare are popular with the public and therefore difficult to repeal. The most interesting is the elimination of pre-existing conditions as a pretext for denying insurance coverage, a necessary requirement for universal coverage. Interestingly, Mr. Trump has stated that he wants to keep the Obamacare pre-existing condition reforms.

Pre-existing conditions are the anathema of insurance risk pools. Including individuals with pre-existing conditions in any risk pool necessarily increases the medical costs in that pool. Increasing the size of the pool(s) by encouraging other healthy, low-risk people to join the risk pool relatively reduces the costs by distributing medical costs more broadly. Obamacare included a mandate/tax/fine for those that would not heed the encouragement. Despite this, most people have seen their insurance costs increase significantly. Mr. Trump claims he does not like the mandate and can eliminate it and still reduce costs by making the insurance market more competitive (such as allowing insurers to compete across state borders). Others argue for a consumption tax to increase revenue (see the Emanuel article above). The success of such plans in mitigating costs are yet to be determined.

The other major way to reduce the medical expenditures of a riskier pool is to begin to reduce the services and conditions that will be covered in that pool; that is, to ration care. This is an emotional topic as many of us have already had personal experience with being denied a service we expected to be covered. But it is a necessary topic to examine given finite financial resources, what Dr. Emanuel described in his article as a Rawlsian sense of justice, as “health care is not the only vital service”. A person with a Christian worldview may come to a different conclusion of justice from Professor Rawls. Deciding the appropriate ethical calculus to use to make these decisions is a topic for many other blog entries.

Politically, on both sides of the aisle, we seem resigned to answering the ethical question of whether healthcare should be a right by answering in the affirmative. The hard work is now determining what medical care obligations we are willing to require to actually meet that right. The ethics of those decisions are yet to be determined.

Another Ethical Slippery Slope for A.R.T.?

Medical business opportunities usually seem to make for interesting ethical discussions these days. Forbes recently published an article showcasing Prelude Fertility, an assisted reproduction technology (ART) start-up seeking to combine all the technologies of egg harvesting, cryopreservation and IVF under one umbrella for the purpose of controlling one’s biological clock. Aside from the business issues, the article does a fair job of discussing the medical risks and even some of the ethical concerns. I would like to focus on some of the ethical concerns.

The ethical concerns of standard embryo cryopreservation and IVF fall under two main areas. The first is that IVF often does not use all the embryos created by the process. The frozen embryos not used are human beings not commodities and should not be discarded (i.e. killed) or stored indefinitely (see Steve Phillip’s previous blog entry). The second issue is that although cryopreservation of embryos and IVF have now produced individuals who are beginning their third decade of life, we still do not know for certain what are the long-term health effects of this process (e.g. intelligence, aging, germline, etc.)

Prelude is focusing on an emerging technique of oocyte cryopreservation, which, if successful, will sidestep the first ethical concern – no embryos will be frozen, just the precursor eggs and sperm. Oocytes are very fragile and previous techniques used to cryopreserve them caused their destruction. The newer vitrification process of flash-freezing has significantly improved the preservation success for oocytes. The success rate has sufficiently improved such that the American Society for Reproductive Medicine (ASRM) removed their experimental label from the vitrification procedure. Still ASRM warned: “Marketing this technology for the purpose of deferring childbearing may give women false hope and encourage women to delay childbearing.” They further warn:” There are not yet sufficient data to recommend oocyte cryopreservation for the sole purpose of circumventing reproductive aging”

This is exactly what Prelude is doing. One of the marketing points is that this process allows women to delay pregnancy to when it is more convenient for their career advancement. The long-term health concerns listed above for embryo cryopreservation are equally valid for oocyte cryopreservation – we simply do not yet know all the long-term human health consequences.

The CEO of Prelude, Martin Varsavsky, is putting his entrepreneurial money where is his mouth is, so to speak. He and his wife are expecting the first Prelude baby this January.

Marketing bravado aside, is career or lifestyle convenience really a good reason to go where ART has not ethically gone before?*

*apologies to Gene Roddenberry

Does Mitochondrial Transfer Really Save Lives?

This blog has discussed Mitochondrial Transfer, also referred to as Mitochondrial Replacement Techniques (MRTs), several times in the past (HERE and HERE to link a few.). The reason for further comment is that Dr. John Zhang, a New York-based fertility specialist admitted that he assisted in the successful fertilization and healthy delivery of a now 5 month old baby boy using the technique of Mitochondrial Transfer called Spindle Nuclear Transfer. The parents were from Jordan and the procedure was performed in Mexico, “where rules don’t exist [that legally prevent performance of the procedure].” Both Dr. Zhang and Sean Murray, an executive of the Australian Mitochondrial Disease Foundation have ethically justified the decision to perform the procedure in Mexico (to get around bans in other countries such as the US) with the claim that the procedure saves lives (Zhang: “To save lives is the ethical thing to do” and Murray: “This is about saving lives and offering hope to a community.”)

Saving lives is certainly a laudable endeavor. But does the technique really save lives?

The goal of the technique is to remove the diseased maternal mitochondria and replace the mitochondria with healthy donor mitochondria. In this particular case, five donated eggs from an otherwise healthy woman had the cell bodies removed and replaced with the nuclei of eggs from the mother, and these altered eggs were subsequently fertilized by with the father’s sperm. It is unclear whether all of these fertilized eggs were all used in the implantation or if some were destroyed by failure of the technique or purposefully destroyed after genetic testing showed mitochondrial abnormalities. Obviously one egg successfully survived the process to become the (presumably) healthy baby boy. But what about the other four?

More generally, whose life was being saved by the technique? The technique does not cure an individual who already has the disease. It prevents such an individual from being conceived in the first place, creating and selecting another individual conceived in a manner that does not have the diseased mitochondria.

So, it is likely that individuals are destroyed in the process of “creating” the mitochondrial diease-free individual, and, no actual specific individual is being “saved” by this technique.

It is very important to correctly define our terms before we have the ethical discussion to determine the right thing to do.

Late Term Zika Abortions: Thankfully not Euthanasia

If I were the editor of a recent Newsweek article by Cornell Law Professor Sherry F. Colb, the above title would have been my choice for her article. I must encourage you to read the actual article, lest you believe that the summary that follows is somehow taken grossly out of context. Her concern is that a late term abortion to terminate the life of a Zika-infected baby might be morally problematic because it might be misconstrued as euthanasia rather than simply a late term abortion.

She begins factually with her concern for the increasing prevalence of Zika, a virus causing severe microcephaly of babies born to parents with the infection. Further complicating the matter is that the birth defects are not apparent until well into the third trimester. Thus, per Professor Colb, Zika pregnancies require us to answer two moral questions. The first question is whether it is “…right to end a pregnancy because the baby would be severely disabled if brought to term?” The second wonders whether it is “right to take the life of a fetus late in pregnancy, regardless of the reason?” (I was encouraged at this point that she conceded both that the fetus was alive and that a baby was a direct result – my optimism did not last long.)

She was quick to point out that she considers “…the reasons for a woman’s choice to terminate her pregnancy to be irrelevant to the question of whether she should be legally permitted to do so…” as she is “…entitled to be free of the bodily intrusion that is pregnancy, even if her reason for wanting to assert her bodily integrity is an offensive one.” Her reason for even bothering to discuss the moral issues is because she anticipates that large numbers of women may be wanting to terminate their pregnancies so the discussion is worth having, “…even if our answer will not affect the legal conclusion that the woman should be free to terminate.”

In answering her first question in the affirmative, she effectively equates routine abortion to contraception and considers the fetus to be a “potential” life, arguing that even in Down Syndrome, parents choose abortion, and since Zika is a worse condition (her stipulation), “…it may be that an abortion will spare not only the parents but their child a life that is, in some sense, not worth living.” (I have always wondered what it is we are sparing a specific child by not having it live – a non-entity cannot be spared anything – the concept seems incoherent)

The second question is more troubling for her. Her “no-go” line for abortion and moral significance is sentience but she admits that others have different criteria. However she further concedes that the later one goes in the third trimester, “…the more likely that people will have the moral intuition that we are no longer talking about a ‘potential’ child but are instead talking about either an existing child or at least someone worthy of nearly as much moral consideration as a newborn baby.” For her, the moral calculus has changed. Bodily image abortion arguments fail (simply birth the child alive, “…thereby ending the internal occupation…”). Terminating the pregnancy at this point does not need to terminate the life of the fetus or baby, and “…the choice to have an abortion (one that kills the fetus or baby) is really a choice to take the life of the fetus or baby because it is not considered a life worth living.” She is equating late term abortion to euthanasia. (Correctly in my mind, and, since I have different criteria for abortion, specifically, nothing post conception, therefore, all abortion is euthanasia)

She solves her moral dilemma by hiding inside a legal loophole. “If one nonetheless concludes that because of the potentially catastrophic nature of the birth defects, children with Zika are better off not existing than living severely compromised lives that they would otherwise live, the fact that they live inside a pregnant woman may give people a legal –if not a moral—loophole through which they can achieve their desired end, though it is really euthanasia.” The pregnant woman can do all this “…without beginning the slide down the euthanasia slippery slope, because we can fit what she has done under the heading of “abortion” instead of “euthanasia.”

Let that last bit of mental gymnastics sink in.

From what vantage point does one judge the slippery slope of one moral issue whilst sliding down the slope of another?

The $280 Better Mousetrap

The rising cost of the Mylan EpiPen has been in the news. Since 2007, Mylan has raised the cost of their two pack EpiPen from just under $100 to over $600 today. That is a cool $300 per EpiPen, substantially above the ten to twenty dollar retail cost of the raw material epinephrine. Why should I be asked to spend a $280 mark-up? Is this ethical?

Briefly, here is some background. Adrenalin, pharmacologically known as epinephrine, is a substance that your body releases in response to stress. It allows the body to handle emergencies by the so-called “fight or flight response”. Large doses can be lifesaving, as is the case with allergic reactions. Individuals with allergies to peanuts or bee stings can receive epinephrine via an injection under the skin or into a large muscle, which can delay or even eliminate a life-threatening anaphylactic reaction (allergic swelling so widespread that an individual cannot breath or maintain their blood pressure), usually allowing time to travel to the ER for further care.

The EpiPen is one method of administering the epinephrine. An individual simply grabs the device, shaped like a stick, and jabs the end of the stick against his or her thigh muscle. This causes the EpiPen to release a spring-loaded needle, extending the needle into the thigh muscle, delivering a fixed dose of epinephrine into the muscle. The device is very easy to use, so much so that a young child can be taught to use the device safely and reliably.

One does not need to use an EpiPen to self-administer epinephrine. I checked with my local pharmacist and he can set me up with a syringe, needle and vial of epinephrine, and, as long as I can draw up the correct dose, and, as long as I am not squeamish about giving myself an injection in my thigh muscle, I can administer the exact same life-saving dose of epinephrine as the EpiPen. The total cost is around ten to twenty dollars per dose. Many other drugs, most notably insulin, are both self-administered and life saving, so nothing novel is required here. Additionally, according to my pharmacist, the “purse-life” of the generic vial of epinephrine extends several months beyond the one-year limit of the epinephrine in the EpiPen.

In short, Mylan is asking you to pay $280 for the privilege and convenience of using their stick to administer epinephrine rather than doing it yourself. Presently, there are no other options. Mylan’s only other competitor, Sanofi, withdrew in October 2015 their version of the EpiPen, called Auvi-Q, after multiple reports of failing to reliably deliver the correct dose of epinephrine. The present lack of a competitor seems to suggest that Mylan has indeed built a better mousetrap. They seem to be feeling a little guilty about their market dominance, as they have just today promised an identical generic EpiPen at half the cost.

Mylan’s mea culpa aside, is it ethical for them to charge whatever the market will bear, not for the epinephrine, but for the convenience of administering the epinephrine?

Vouchers for Kidneys

An innovative voucher program has begun at the UCLA Medical Center to increase the number of live kidney donations. The program allows for an individual to donate his or her kidney in exchange for a voucher that allows the donor’s specified voucher recipient to receive a kidney in the future. See HERE for the details.

Presently the number of people needing a kidney donation far exceeds the number of available kidneys. Historically, kidneys were obtained upon the death of an individual via the United Network for Organ Sharing (UNOS) and were (and still are) dispensed via a transparent process matching donors and recipients based upon disease severity and tissue-type matching. More recently, it has become possible for a living person to donate one of their two kidneys to another individual that the donor specifies (usually a close family member). The process is managed by several organizations, such as the National Kidney Registry. The process is regulated such that donor kidneys may not be bought or sold. There are real health risks to the donor in a live kidney donation but the actual risk of death is low. Despite the addition of live kidney donations to the pool from UNOS, the number of people awaiting a kidney donation far outpaces the number of available kidneys – approximately 13 people die every day awaiting a kidney transplant.

Trusty Wikipedia defines a voucher as “a bond of the redeemable transaction type which is worth a certain monetary value and which may be spent only for specific reasons or on specific goods”. Is this voucher system going to lead to a “cash for kidneys” situation? Presently, there appear to be some good safeguards in place. The UCLA voucher is not transferable to anyone other than the five people listed on the voucher, and only the first person within the list needing a kidney can redeem that voucher. Recipients are also identified by specific tissue typing and blood typing, making it virtually impossible to transfer the voucher to a random person. As long as these restrictions remain in place, these vouchers should have no market value for anyone not listed on the voucher.

But the voucher program does abstract the act of donating a kidney, storing the value of the act in paper format, allowing its redemption (in this case, the receiving of a kidney) at some future time. Effectively, the voucher program monetizes the kidney donation. Kidneys perish and vouchers do not. This is effectively one of the benefits of using money over bartering as a basis for expanding trade. UCLA hopes the voucher program results in such an expansion of the supply of kidneys and that expansion of supply is a good thing.

However, this monetization of the kidney donation program demands we remain ever more ethically vigilant to avoid heading down the slippery slope of “cash for kidneys”.

The Bioethics in Routine Office Visits

I saw two patients last week on the same morning for identical tests whose divergent stories generated an interesting debate amongst my staff regarding healthcare rights and the cost of providing the same.

For some background pertinent to this discussion, I perform a diagnostic test in my office called an Electromyogram (EMG) which quantifies the electrical function of muscles and nerves, and is used by my surgical colleagues to assist in their decision whether or not to operate. Depending on the diagnostic question, the test can take anywhere from 30 minutes up to 2 hours to perform, interpret and generate a report, the average encounter lasting about 45 minutes. Currently, we are reimbursed via rates we negotiate with the various insurance carriers, all of which are fixed at a rate that is some percentage of Medicare reimbursement rates (generally ranging from 80% of Medicare for most state Medicaid products to 125% of Medicare for some private insurance products). Without getting into the minutia of medical cost accounting, there are real costs to our group related to my performance of the test on any given patient such that, below a certain reimbursement level, we actually lose money. Further, if a patient cancels his or her test at the last minute and I am not able to move another patient into the cancelled appointment time, no revenue is generated for that appointment.

The first patient showed up for her test and had a state Medicaid insurance plan such that she paid nothing for her insurance plan. She was not even required to pay an office “co-pay” so she had no “out-of-pocket” costs for her medical care. When my nurse explained the EMG test, including the need to use rubbing alcohol on her skin in areas where I would be inserting an electrical needle, she declined the test. When asked why, she indicated she had just spent $120 on a “spray-on-tan” the day before and did not want to cause streaking of the tan. In our region, the going rate for this type of tan is $60 per application and she required two such applications to achieve her desired result. She was rescheduled and later did complete the test and our practice was eventually reimbursed at the contract rate of 80% of the standard Medicare reimbursement rate.

The second patient was a single mother of two who worked two jobs, making just enough to fail to qualify for the state Medicaid insurance just described, but not enough to afford the cost of insurance through the PPACA exchange in our state. She determined that her monthly insurance premium and $5000 deductible was more than she could afford. She requested our “self-pay rate”, which I further reduced to 95% of our Medicare rate after hearing her situation.

Most of my staff were disgusted with the behavior of the first patient and admired the behavior of the second. A few wanted me to further reduce the charges to the second. I pointed out that if I saw only patients like the first or second patient, I would have to lay-off 30% of my current staff, this after salary reductions all around. Others noted the first patient’s behavior was very rational from the standpoint of her personal cost accounting. A $120 spray-on-tan has financial priority over a $0 EMG test, despite the fact that the subsequent test did reveal a finding that caused my partner to correctly modify his treatment plan (i.e. the test turned out to be medically beneficial to her health).

The two isolated cases presented here are an insufficient basis upon which to form healthcare policy. In both of these cases, the EMG test results caused a better surgical decision to be made for each patient, so in that sense, both tests were medically necessary. In both cases my frugal office manager argues that we lost money. The cases did generate very good questions by our staff such as: How much should a necessary test cost a patient? How much should our practice get reimbursed for performing a necessary test? Essentially, who should pay for necessary healthcare? Is healthcare a right such that someone is obligated to provide the necessary service? What makes a service necessary? Should everyone have some (financial) skin in the game? Unfortunately, we generated several more great questions but no consensus answers.

Except for one: The only consensus opinion that my staff formed after considering these two examples was that one’s co-pay should approach the local cost of a spray-on-tan, but just a single application not a double.