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 [Customer] Patient is Always Right?”

I recently received email notification of the 2016 update of the “Medscape Ethics Report: Life, Death, and Pain.”  Follow the link to view a slide set summarizing the results from 7505 surveyed physicians, 63% of whom were female:

  • Physician-assisted suicide (PAS) for “terminally ill patients”: DOCTORS now favor it, 57%-29%, up from 46%-41% in 2010. The proportion saying “it depends” remains at 14%.  What’s driving this?  Regard for patient autonomy—something that, as I and others have argued, can be elusive, to say the least, when it comes to PAS.  Sample comments include this one (emphasis mine): “It is shocking that this is a controversial topic.  Medicine is a secular institution and we must honor the wishes of our patients.”  SHOCKING??  When the heart of medicine is a covenant between doctor and patient that should include a regard for life that does NOT rest on whether one accepts there is a God?
  • PAS for “non-terminally ill patients with irremediable suffering”: Yes 28%, No 46%, “it depends” 27%.  To all those who said yes to the first question but something else to the second—you don’t get to make that distinction, IF your concern is patient autonomy.  If you counter that the point is that death sometimes is a better course for the patient, you are substituting some level of professional judgment in place of patient autonomy.  I don’t think one can have it both ways.
  • “Would you treat a family that refuses vaccinations?” 23% say no, 19% say “it depends.”  So much for patient autonomy.  No details about what vaccinations (HPV?)  Oh, and reluctance is HIGHER among pediatricians than family docs or internists.
  • Only 50% would tell a patient he or she is inexperienced in doing a procedure before performing it. I lived through “see one/do one/teach one,” as I assume all physicians do in their training, but I’m tempted to say, so much for informed consent.  In this day of “consumer empowerment,” we should encourage patients to ASK the question, and have an idea what they will accept for an answer.  Or maybe we should make our procedure consent forms a bit more like human research consent forms, and require that a number be specified on the form placed before the patient.
  • Only 49% think a terminally ill patient should be permitted to try “any” experimental treatment. This is a harder one to word a question about. Perhaps more on a future post.
  • 12% say life support is being withdrawn too soon, 88% say it’s not.
  • 21% would treat a patient against his or his family’s wishes, 45% would consider it. Another crack in Fortress Autonomy.
  • An increasing number would perform an abortion in some cases even if personally opposed—45% overall, 55% of OB-GYNs.

There’s more—check it out.  But it looks like this is not my father’s—or my, or Hippocrates’s—profession.

The inconsistency of many who reject human dignity

I just finished reading Richard Weikart’s new book, The Death of Humanity: And the Case for Life. Weikart is a professor of history at California State University, Stanislaus and has presented several papers at CBHD summer conferences. His latest book looks at how western culture has lost an understanding of the concept of human dignity and the value of human life. He details the historical development of alternate worldviews beginning in the Enlightenment which have supplanted the Christian worldview that was the foundation of Western culture it was the basis for Western concepts of morality, human dignity, the value of human life, and human rights. He shows how the adoption of a materialist worldview that has no place for the supernatural and the acceptance of unguided evolution of human beings led to Western belief systems that have no place for human dignity or the value of human life and have led to the widespread destruction of human life. This destruction of human life has manifested itself through political systems such as the Germany of Hitler or the Russia of Lenin and Stalin, but also through cultural acceptance of practices such as abortion and euthanasia.

One of the insights that I find most interesting is that when some, like Nietzsche, have applied these materialist and evolutionary worldviews consistently they have come to the conclusion that there is no foundation for morality and that those who have power reign without limits. However, many in modern Western culture hold to a worldview that provides no foundation for morality, but still take strong moral stands for the things that they believe in. One issue that illustrates this is euthanasia. Strong supporters of euthanasia insist that people have a right to make their own decisions about how and when they will die while rejecting the concept of human dignity which would say that human life has value and should not be intentionally ended. They fail to recognize that the rejection of human dignity undermines the concept of human beings having any rights at all. Along with Weikart I am glad that most people who reject human dignity based on materialist and evolutionary foundational beliefs are not consistent enough to go all the way to nihilism, but it is important that those of us who believe in moral truth continue to point out that without the source of moral truth who is himself good and who has created human beings in his image with inherent dignity there is no reason to believe that any moral values are valid.

Happy New Year!

As I sit to write this blog, 2016 is nearing its end. It seems like many people are quite happy about this prospect. I must admit, the year became rather wearying at points with all of its ups and downs.

I took a few moments to reflect upon my blogs from the past year. Zika, physician-assisted death, and pharmaceutical prices were some of things I blogged about in 2016. Undoubtedly, each of those, along with many others, will continue to be issues in 2017.

At the beginning of 2017, with all of the things that are rapidly changing around us, there is one thing that remains constant: the intrinsic value of a human life. As we approach 2017, let us remember that this value is not an economic number, based on an individual’s contribution to the national GDP. Neither is the value of a human life based on intellectual ability, tied to a person’s IQ. Too often, humanity’s measurements of a person’s value—physical strength, intelligence, or buying power—all miss the point. Those from a Judeo-Christian perspective understand that each and every human is made in the image of God; therefore, each deserves to be treated with honor and dignity. Bioethics is at its best when it recognizes this unchangeable reality.

Have a great 2017!

Implications of the incarnation

As I systematically read through the Bible, but at a much slower pace than those who read through the Bible in a year, my reading of Scripture is frequently out of sync with the seasons of the church calendar. This Advent I have been reading through the last chapters of the gospel of Luke which include Jesus trying to get his followers to understand that he is going to Jerusalem to die and then be resurrected, his final days of ministry in Jerusalem, his death, and his resurrection. In my reading I have been struck by how much Jesus’s physical nature plays a part in what the gospel writers are saying. His sacrifice for the sin of all humanity is a very physical one with beatings, a cruel means of execution, and very literal physical death. Luke also makes it very clear that Jesus’s resurrection is also quite physical. When he shows himself to his followers they not only see him, but he invites them to touch his body which still bears the marks of his crucifixion and he demonstrates his physical nature by eating with them. When I turned the page and began reading in John’s gospel, he writes about the divine eternal Word taking on physical form by saying that the Word became flesh.

Even though I had not planned it this way, spending time thinking about the physical nature of Jesus fits very much into the season of Advent as we anticipate the celebration of the incarnation of Jesus. The physical nature of Jesus has ethical as well as theological implications. If it was important for Jesus to become physical to be our high priest and provide the sacrifice for our sins, then being physical must be an important part of who we are as human beings. Knowing that Jesus had a physical body in his resurrection implies that the eternal existence that we will have after death will be a physical one as well.

All of this helps us to understand that we as human beings exist as an integration of physical body and nonmaterial spirit, not just in this life, but eternally. The integration of body and spirit that is an essential part of our human nature tells us that we are who we are throughout the physical life of our body and should not be considered less than human at stages of development or degeneration during which we are clearly physically present but our non-material mental faculties appear to be absent. It also implies that what we do with our bodies is intimately connected with who we are as a person. We cannot treat our bodies is something that we own and can use for our pleasure without our actions having an impact on who we are as a person. It also means that we who treat our patients’ physical bodies are dealing with something that is sacred.

I pray that as we celebrate Christmas we will reflect on the amazing implications of the eternal Word becoming flesh in the form of a baby born in Bethlehem.

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?

Gattaca validated

In the made-for-bioethics movie Gattaca, when the main character Vincent is born, a nurse in the delivery room draws a drop of his blood, places it in the nifty instant genetic analyzer, and intones, “Heart disorder: 99% probability. Early fatal potential: life expectancy 30.2 years.” (Spoiler alert!) However, Vincent doesn’t let this genetic version of a horoscope control his life, but goes on to beat the odds — and his society’s rampant genetic discrimination — to live and succeed, proving that, contrary to his society’s beliefs, genetics are not determinative.

Now a study in the New England Journal of Medicine has confirmed the message of Gattaca. The study examined patients who have genetic risk factors known to predict heart disease (“Heart disorder: 99% probability”). It also analyzed these patients’ heart-healthy behaviors: eating a reasonable diet, getting some exercise, avoiding smoking, and the like. The study showed that even for those with the highest genetic risk of heart disease, patients who practiced heart-healthy behaviors had less heart disease than patients who didn’t; and that the patients in the highest genetic risk group had the greatest reduction in risk when they practiced such behaviors. In fact, they cut their risk in about half.

Sure, genes confer risk for heart disease. But contrary to popular understanding, they do not confer inevitability.

Over and over I hear my patients say to me, “It’s in my genes. It must be genetic.” They usually are talking about something that they feel they have no control over. Too often they have swallowed the line from the press and pop science, the line that says that genes are determinative. If you are looking to absolve yourself of responsibility for who you are and what you do, the whole determinism thing is extremely convenient: “I can’t help it: it’s in my genes,” you say, smiling gently as you take one more drink too many with your mistress while driving 85mph down the highway, comforting yourself with the “facts” that alcoholism, infidelity, and risky behavior are all genetically determined.

However, if you feel that you’re a responsible human being whose choices actually mean something, you might be thinking that the whole determinism thing is a little fishy.

Genes do exert influence. They are a risk factor in many conditions. But they have been portrayed as way more controlling than is warranted. We are not puppets dangling on doubly-helical strings. There are many things influencing our lives: environmental and socio-economic and biologic and emotional and spiritual and, yes, genetic factors. They all affect and expand or limit our choices. But it is still we who must make the choice. To the situations that affect us we are to a greater or lesser extent able to make response — we are “response-able” — and must not take refuge in our genes, or any other abstracted part of our humanity, to reduce ourselves to automatons following an inexorably pre-determined path.

Christian ethics and the powerless

The recent political campaign and election week have had many of us thinking about politics and government. For those of us who look at bioethics from a biblical perspective we have had to think about how our perspective on moral issues affects public policy and how we as a people govern ourselves. What do we do when no one seems to support a public policy platform that includes both care for the poor and care for refugees that we see in God’s message to Israel through the prophets and respect for the value of every human life including those who are unborn, terminally ill, or disabled who have been made in the image of God?

One thing to remember is that our ethical beliefs are first about how we ourselves should live. For Christians that means being willing to submit to God’s moral truth and live our lives in a way that reflects his goodness and love. Our next obligation is to do what we can to protect those who are the most helpless and on the fringes of society, including influencing public policy to help accomplish that end. That is the focus of much of what the prophets told Israel and what Jesus demonstrated in how he cared for those around him. We need to stand for what is right in every situation, but focus on public policy that protects those who are weak. That can include preventing the unborn from being killed, protecting the old, infirm, and disabled from being euthanized, and providing care, including adequate health care, to the poor, the immigrant, and the refugee.

We should not be surprised that biblical values do not line up fully with any of the major political groups in our very divided and very secular society. We live in a fallen world. The political process recognizes that people are basically self-centered and appeals to that selfishness to get elected whether that involves an appeal to protect the voter’s economic well-being at the expense of others or an appeal to satisfying the voter’s desires without moral limitations. The Bible tells those of us who follow Jesus that our focus should not be on ourselves, but on others, particularly those who cannot stand up for themselves. In a fallen world that perspective is not likely to win elections, but we still need to appeal to the sense of what is right that people have written on their hearts to move government toward protecting and caring for those who are powerless.

So…

Colorado didn’t take my advice.  On Tuesday, voters there approved doctor-assisted suicide by a 2-to-1 margin—65% to 35%.

Ouch.

This is looking like the next social march that may not be stoppable legislatively.  That doesn’t mean people who agree with me on this matter shouldn’t try, but it does seem to mean that we need to prepare for quiet resistance:  really caring for dying people, supporting good palliative care, warning people about the risks of injustice, urging them not to seek this route out, and fighting for the right of doctors and other health professionals to refuse to participate, on grounds of conscience and moral conviction.  That last one is the most obvious place for resistance in statute and regulation.

The arguments in favor of assisted suicide really boil down to a claim of personal control—an illusory prospect, rife for abuse—and hard cases, when available palliative methods come up short of alleviating suffering—to which I think we must say that “hard cases make bad law.”

Wednesday was rightly a day of mourning for many people.  And for me—mainly because of this vote.