Avoiding advanced dementia, part 2

By Steve Phillips

Last week I wrote about one of my moral concerns regarding Norman Cantor’s proposal to avoid advanced dementia, which he views as being intolerably degrading, by using an advance directive stating that when he reached a certain level of dementia he no longer wanted to eat or drink so that his death would result. My concern with this was that the person caring for him would have to concur with him that his life at that time was no longer worth living in order to justify following his directive and cease to feed him and give him fluids to drink. An independent assessment that another person’s life is not worth living is required of any physician or other caregiver who participates in euthanasia or assisted suicide. Such a determination that another person’s life is not worth living is something that we should never do and the need for that determination is a fundamental reason why euthanasia is not permissible.

Dena Davis in her article “Avoiding Dementia, Causing Moral Distress” agrees with Cantor that a person ought to be able to use an advance directive to end his own life to avoid advanced dementia, but sees a flaw in Cantor’s plan. She writes, “As long as the demented person is enjoying her diminished life, it will be psychologically and emotionally difficult, perhaps impossible, for most people to withhold food or even simple medical interventions. Even if they believe they ought to comply with the advance directive, the moral distress is simply too great.” She concludes that since a person cannot rely on others to follow an advance directive like Cantor’s, the only way to avoid advanced dementia is preemptive suicide. The article “A Debate over ‘Rational Suicide’” in the New York Times describes 80-year-old Robert Shoots doing just that.

My second concern is that it is wrong for us to choose to end our own life by rational suicide even if no one else participates in that act. Autonomy and personal liberty are important, but there are some things that can be wrong to do even to ourselves. This is easier to see from a Christian perspective. Christians understand that our lives belong to God and we do not have the authority to end our lives. That authority belongs to God alone. We have been commanded not to kill any innocent human being because we have all been made in the image of God. That includes a command not to end our own lives.

It can be harder for someone who does not understand that his life belongs to God and has value because he has been made in God’s image to see why rational suicide would be wrong. However, all of us are relational beings. We are connected to our families and the rest of humanity. What we do to ourselves impacts others. Those who contemplate rational suicide to avoid things such as advanced dementia forget how their deaths impact others. They have a desire to avoid a part of life they do not want to live and may want to relieve those who love them from the burden of caring for them but caring for those we love when they become dependent is an opportunity for us to be more fully human. Caring for a loved one with dementia is very hard but is one of the ultimate expressions of human love. We should not take that away from those who love us.

Avoiding advanced dementia

By Stephen Phillips

Norman Cantor has prompted widespread discussion with his recent article “On Avoiding Deep Dementia” in the Hastings Center Report (link is to the abstract only). In his article he states that he finds the possibility of living through progressive cognitive dysfunction and helplessness an intolerably degrading prospect. As a result, he has proposed using an advance directive stating that when he would reach a certain level of cognitive impairment, which would include having lost the capacity to make his own medical decisions, his advance decision to voluntarily stop eating and drinking would be implemented resulting in his death. He argues that it would be morally proper for those caring for him at that point to follow his prior instructions even if he showed no appearance of suffering at that point in his life.

There are many moral concerns related to Cantor’s proposal. I would like to address two concerns. Today I will address a concern that his proposal has in common with any form of euthanasia or assisted suicide that requires the assistance of someone other than the person who is choosing to die. In a later post I will address the issue of true rational suicide in which no assistance from a second party is required.

By proposing a strategy for avoiding advanced dementia that involves waiting until after he is unable to make decisions on his own, Cantor has required that someone other than himself who is providing care for him must implement his instructions. He sees that as respect for his autonomy, but whenever a second person enters into an act of euthanasia that person must make an independent decision that it is reasonable to agree that the life of the person who is to die is not worth living. This is true whether the act that is being requested of them is active euthanasia, assisted suicide, or cessation of eating and drinking. We are not morally obligated to do anything that another person requests of us. One qualification for fulfilling a request from another is that the request be reasonable. If there are any circumstances under which it is morally permissible to participate in ending another person’s life it could only be when that person’s life is no longer worth living. While it might be maintained that a person could make that determination about his or her own life, anyone assisting in that death needs to make an independent decision that the person’s life is not worth living in order to determine that this is a reasonable request which should be granted. However, we should never make a determination that another person’s life is not worth living. Our concepts of human equality, universal human rights, and justice all depend on the idea that every human life has value. All of that is undermined if we can say that there are some human lives that no longer have value.

Cantor’s proposal requires that someone caring for him after he has been become unable to make his own decisions agree with his previous determination that when his dementia reached that point his life would no longer be worth living and should be ended. That is something that we should never do.

Reducing Abortion Regardless of Roe v. Wade

By Mark McQuain

The selection of the next Supreme Court Justice has perhaps naturally unleashed a flurry of op-eds describing the post-apocalyptic world that will result from any partial or complete reversal of Roe v. Wade. In the July 18th, 2018 Perspective in the NEJM, Dr. Julie Ingelfinger offers the tragic case of a foreign nursing student she befriended while both were training in New York in the late 1960s. The student was finishing her final nursing year and was engaged to be married when she became pregnant despite the use of contraceptives. Per Dr. Ingelfinger, neither the student nor fiancé had “the means to provide for a baby, so they reluctantly decided that terminating the pregnancy was the only choice.” The only abortion option available at that time, pre-Roe v. Wade, was a “back-alley abortion.” After the abortion, the student developed sepsis, resulting in a hysterectomy and kidney failure. Dr. Ingelfinger oversaw the dialysis and despite appropriate medical care, the student died suddenly from complications of the dialysis. Dr. Ingelfinger’s reason for sharing this story now is to remind us that back-alley abortions resulted in similar complications in many other young women pre-Roe v. Wade and warn that if Roe v. Wade is overturned in the future, young women seeking abortion will again suffer the same fate as her nursing student friend.

In a similar vein to Dr. Ingelfinger’s editorial, there is a second op-ed on CNN website on May 5, 2018 by Danielle Campoamor entitled “Why Supporting Abortion is a Pro-Life Position”. She fears any future restrictions in Roe v. Wade will result in the suffering or death of young women seeking an abortion and wants everyone to have the “safe, affordable and relatively easy abortion” that she experienced:

“I wasn’t subjected to mandatory waiting periods, forced counseling or an abortion provider required to regurgitate state-mandated, inaccurate information. I didn’t have to travel long distances, worry I was getting there too late in the pregnancy, find money to pay for child care or walk past angry or intrusive protesters. Instead, I went in pregnant and, a few hours later, came out with my future back in my control.”

In both articles, the focus is unilaterally on the health and life of the mother. Ms. Campoamor’s position is easily challenged, if not decimated, by including the health and life of the baby in her calculus. Dr. Ingelfinger’s premise requires more unpacking.

Her position appears to be that all future unwanted pregnancies in an overturned-Roe v. Wade world would require a pre-Roe v. Wade “back-alley” surgical abortion. Many Latin American countries have never legalized abortion yet their illegal abortion fatalities have dropped as medical abortifacients (morning after pills) have replaced surgical abortion methods. Interestingly, both the author of the previously linked article on the Latin American experience and Dr. Ingelfinger cited economics (and not legality) as a main reason for choosing abortion. Analysis of the statistics on why women in the US choose to abort challenges this assertion. A clear understanding of these statistics might help identify strategies that lead to a voluntary reduction in the number of abortions, absent changes in the legal status of abortion.

There is a nearly 15-fold increased risk to carry a baby to full-term than it is to have an elective abortion. We have “successfully” divorced sexual activity from the risk and responsibility of bearing and rearing a child, as long as we are willing to use abortion as the definitive stop gap in maintaining our birth control. From my standpoint, this success and this control has come at a terrible price, namely the deaths of over 60 million babies in the US alone. Sadly, I pessimistically do not believe that there will be a meaningful change in the Federal law regarding abortion, regardless of who becomes our next Supreme Court Justice (link requires subscription). There are simply too many women and men who have come to rely upon the type of control of their future activities that abortion provides. Therefore, I ask Dr. Ingelfinger, Ms. Campoamor and all of those on the other side of the abortion divide: must all unwanted pregnancies end in abortion (medical or surgical), regardless of the status of Roe v. Wade?

The Benefits of your local Medical Ethics Committee Consultation

By Mark McQuain

No doctor or hospital system is perfect and, frankly, no one would ever claim to be. Regardless, we hold some medical facilities in very high regard simply because of the consistency of their record of care. One such place is the Mayo Clinic in Rochester, Minnesota. So, it was somewhat of a surprise to see a CNN headline featuring a complicated medical ethics issue gone awry. The story is long and admittedly somewhat one-sided, with more she said than he said. Still, the story as told is instructive by reminding everyone that medical ethics cases are complex, and it is usually best never to “go it alone”.

Briefly, in 2016, a 18-year-old young woman with a brain aneursym was transfered to the Mayo Clinic for urgent surgical treatment. Her surgery went well. The problems did not really begin until she was recovering on the inpatient rehabilitation unit. The patient and family became dissatisfied with her care. The staff believed that the patient was unable to make informed medical decisions due to alleged changes in her cognitive status as a result of treating the brain aneurysm and rather than appoint a family surrogate, began the long complicated process of trying to arrange for third-party guardianship. The mother and stepfather, in advocating for their daughter, came into conflict with the rehabilitation staff, resulting in the mother being banned from the hospital. The staff reached out to the biological father but he declined to become involved. The staff apparently believed the family to be unreliable and began a process to acquire a third party guardian to assist the patient with her medical decisions. The family and patient came to feel the patient was imprisoned against her will. The patient and her family eventually arranged “her escape” after which the rehabilitation staff called the police, claiming the patient was “abducted”. The patient has and is continuing to recover apart from Mayo. The legal issues remain.

Medical ethicists who have reviewed the details of the case agree on at least one detail: Mayo should have utilized their medical ethics committee to assist in determining how best to handle the patient’s possible lack of medical-decision-making ability, and in determining who might best serve as the patient’s surrogate if such was needed. Most medical providers have become involved in contentious medical decision making, where the patient and/or family comes to disagree with a recommended treatment plan by the medical staff. Involving the hospital’s medical ethics committee can be an excellent resource to regain dialog with the patient and family, and hopefully come to a medical decision that best benefits the patient.

Every Day is a Gift

By Neil Skjoldal

Into the genre of news reports about physician assisted suicide comes a powerful piece from The Washington Post.   It is the story of J. J. Hanson who was diagnosed with a glioblastoma multiforme.  It traces his difficult journey as it relates to PAS.  Because of the poor prognosis, treatments at times seemed too difficult.  His wife Kristen reported that “he told her that if he had had the lethal dose of medication on his bedside during his darkest of days, he might have used it and then missed out on three more years with his family.”  Her hopes now, since her husband’s death last year, are that lawmakers will “work to improve hospice and palliative care for patients” and “to encourage terminally ill patients to have hope and families to enjoy every moment they have together.”

I am aware that a story such as the Hanson’s will not convince those who are strongly committed to PAS. The argument would be something like, “That’s ok for him.  He died his way, just give me the freedom to die in my way.”  But, at the very least, this story provides a counter-narrative to some PAS advocates, who almost by default go to “I know a person who died very poorly and I want to stop that by helping them end their suffering.”

My observation in talking to people about this subject is that their greatest fear is dying with horrible suffering. Almost everyone can re-tell the story of a friend or loved one that died in this way.  For those of us who think that PAS creates many more ethical problems than it solves, our focus needs to be, as Kristen Hanson suggests, to continue to improve hospice and palliative care.  I am grateful for her courage in telling her story and am reminded that every moment of life should be precious to us.

Labs are growing human embryos for longer than ever before

BY JON HOLMLUND

That’s only a slight paraphrase of a news feature article this week in Nature.  The clearly-written article is devoid of scientific jargon, with helpful illustrations, open-access online, and readily accessible to the non-specialist.  Check it out.

Key points include:

  • Scientists who do not find it ethically unacceptable to create and destroy human embryos solely for research purposes continue to follow the so-called “14-day rule,” by which such experimentation is limited to the first 14 days after fertilization. At that point, the human nervous system starts to form and the time for twinning is past.
  • The 14-day rule is law in some nations, but until now has not been a practical issue because scientists have been unable to grow human embryos that long in the laboratory.
  • That technical limit has been sufficiently overcome that embryos are now surviving for almost 14 days. Scientists have not directly challenged the 14-day rule yet, but might, and would like to revisit it.
  • Experiments on human embryos in that time have included editing of critical genes to see what happens (sometimes they stop growing), and making hybrids of animal embryos with human cells whose purpose is to “organize” embryonic development rather than remain part of the developing individual.
  • Embryo-like structures, referred to as “embryoids” in the article, and sounding similar to “SHEEFs” (“synthetic human entities with embryo-like features”) are also being created. These entities don’t necessarily develop nervous systems in the same way as a natural embryo, prompting questions of just how much they are like natural embryos, whether the 14-day rule applies, and whether they raise other ethical concerns.

The last paragraph of the article, reproduced here with emphases added, is striking and more than a little ironic in light of arguments that embryos are “just a clump of cells”:

As the results of this research accumulate, the technical advances are inspiring a mixture of fascination and unease among scientists. Both are valuable reactions, says [Josephine] Johnston [bioethicist from the Hastings Center]. “That feeling of wonder and awe reminds us that this is the earliest version of human beings and that’s why so many people have moral misgivings,” she says. “It reminds us that this is not just a couple of cells in a dish.”

The essence of humanity

BY STEVE PHILLIPS

Over the past few days I have been reflecting on this year’s CBHD conference which was titled Bioethics and Being Human. In reviewing all the thought-provoking presentations and discussions, I think the opening address by Dennis Hollinger impacted me the most. His talk was entitled Why Humanness Is the Key to Bioethics. He began by saying that in the culture around us the focus has shifted from concept of human dignity to the concept of humanness or what it means to be human. He suggested the technology which is developing artificial intelligence that may be able to reason and robots that take on roles that we have traditionally considered to be human raises questions about what counts as a human being.

The core of what he said related to the idea that there has been a shift in how the culture around us thinks about these things. Our surrounding culture now questions whether there can be an essence of realities. If the existentialist assertion that existence precedes essence is true and there is nothing outside the self to define the self, all our concepts, including our understanding of humanness, become subjective.

Those of us who see the world from a biblical Christian viewpoint understand that there are objective realities in the world. We see that human beings do have a nature, a humanness, that is not subjectively defined, but it is an objective reality that exists due to how we have been created by God. We find that objective understanding of what it means to be human represented in the ultimate human being, Jesus.

But how do we express this understanding of an objective reality of humanness to people in a culture that believes that everything is subjective? I think Hollinger suggested a strategy when he identified the ironies of our surrounding culture’s thinking. He said that the surrounding culture rejects humanness, but longs for relationship; rejects intrinsic moral norms, but longs to be treated justly and honestly; and rejects human meaning, but longs for something beyond. We live within a culture that leaves people without a solid foundation for meaning, relationship, and values. That foundation is available in the God who created us and in his Son, who became one of us, died for us, and rose again to redeem us. He is the essence of humanity and we can share Him with those around us who are deeply in need of the hope that He can provide.

A Supreme Court of One

BY MARK MCQUAIN

Like Neil Skjoldal in yesterday’s blog entry, I, too, am a Supreme Court watcher and enjoy reading their decisions as some might enjoy watching a good sports match or listening to a beautiful symphony. Nerd that I am, I find a well-articulated argument a beautiful thing to behold, even when it runs counter to my bioethics, as it can be a learning experience to help me sharpen my counter argument. My counter argument becomes moot if five or more Justices concur with that original argument, as it is rare, though not impossible, for the Court to completely reverse itself.

Last week, the legal landscape suffered the equivalent of a San Andreas-like major tremor along its political fault-line with the announced retirement of Associate Supreme Court Justice Anthony Kennedy. Justice Kennedy has generally been considered the political center of the Court, the all-important tiebreaker, if you will, on controversial bioethical issues related to abortion, gay marriage and the death penalty. Presently, we give 9 Justices the authority to be the final interpreters of our laws, including those that determine our collective bioethics. Amazingly, we will accept a majority rule 5-4 split decision as being just as acceptable as a 9-0 unanimous decision when validating or invalidating our laws. Being the tiebreaker on previous controversial issues effectively made Justice Kennedy what I call “a Supreme Court of One”. And that is exactly how both political parties are treating the selection of Justice Kennedy’s replacement.

And they should.

In a past blog entry, I tried to make the case that it vitally matters who is interpreting our Constitution, as those individuals are grounding our secular bioethics. Allowing one tie-breaker to decide these important issues is too much power and responsibility in one individual but that has been the reality in our presently divided Court.

My favorite legal philosopher is the late Yale Law School professor Arthur Leff. He gave a lecture at the Duke University Law School in the late 1970s called “Unspeakable Ethics, Unnatural Law”. He made the case that if our source of right and wrong is anything other than a transcendental (unnatural) source, then the resulting ethics/law is always open to challenge. The U.S. Constitution is an example of a natural source of law, perhaps the best that mankind can create for itself, but, since it was created by us, it is therefore always open to challenge by us. Given its internal checks and balances, as long as “We the People” continue to agree to be governed by the Constitution (and this is by no means a permanent agreement), rulings by the Supreme Court essentially function as our collective approval of laws that determine our national bioethics.

I have shared the following quote from Leff’s lecture before but it again seems appropriate:

As long as the Constitution is accepted, or at least not overthrown, it successfully functions as a God would in a valid ethical system: its restrictions and accommodations govern. They could be other than they are, but they are what they are, and that is that. There will be, as with all divine pronouncements, a continuous controversy over what God says, but whatever the practical importance of the power to determine those questions, they are theoretically unthreatening. It is only when the Constitution ceases to be seen as fulfilling God’s normative role, ceases, that is, to be outside the normative system it totally constitutes, or when, as is impossible with a real God, it is seen to have “gaps,” that a crisis comes to exist. What “wins” when the Constitution will not say, or says two things at the same time?

Presently, the Supreme Court interprets those gaps and decides what wins and what loses in our national bioethics debates. Given our present evenly split Court, picking the next Supreme Court of One can literally make all the bioethical difference in the world.

Goodbye, Korematsu

BY NEIL SKJOLDAL

Supreme Court watchers always eagerly anticipate the last week of June because that is when the highest court in the land usually reaches decisions in its most controversial cases.  Last week did not disappoint — several of the decisions were reached by the slimmest of majorities (the infamous 5-4 vote). Then, to add to the excitement, one of the longest serving justices, Anthony Kennedy, announced his retirement, giving the talking heads of cable news seemingly endless fodder for roundtable discussions.

In the midst of the frenzy, a few observers noted the words of Chief Justice John Roberts at the end of his Trump v. Hawaii opinion.  The dissent in the case brought up Korematsu, the decision from the 1940s which concluded that the internment of American citizens of Japanese descent was constitutional.  Roberts disagreed with the dissent, but offered this assessment of Korematsu:

“The dissent’s reference to Korematsu, however, affords this Court the opportunity to make express what is al­ready obvious: Korematsu was gravely wrong the day it was decided, has been overruled in the court of history, and—to be clear—‘has no place in law under the Constitu­tion.’ 323 U. S., at 248 (Jackson, J., dissenting).”

Bioethics should affirm the basic dignity of all humanity.  It reacts strongly to governments using people for experimentation against their will, or to the preferential treatment of one people group over another, or any number of other abuses that have arisen over the years.  Those from the Judeo-Christian perspective often link this to the biblical teaching of the image of God (see the powerful book by John Kilner, Dignity and Destiny).  From my perspective, it means hearing the voice of those who do not normally have a voice and affirming the rights of those whom society so casually overlooks.

Looking back seventy-plus years, Chief Justice Roberts sees the issues of Korematsu clearly.  Sadly, for the many American citizens of Japanese descent interred during the Second World War, there were only three Supreme Court justices who stood with them against such horrific treatment.   Korematsu is a sobering reminder of what can happen when the powerful trample the powerless.  During this Fourth of July week, I will celebrate that this decision has been placed in its rightful place, the ash heap of history.

 

 

 

Vaccines: Modern Trolley Car Dilemmas

BY MARK MCQUAIN

The Trolley Car dilemma is back in bioethics news. For those unfamiliar with the trolley car dilemma, you alone are responsible to operate a trolley track switch to divert an out-of-control trolley car away from five workers on one section of track only to cause the death of a lone worker on the only alternate section of track. The dilemma: someone is going to die, and you get to decide who. In a recent editorial in the June 13th New England Journal of Medicine, Dr. Lisa Rosenbaum nicely describes the utilitarian dilemma surrounding the public health risks and benefits associated with a vaccine for the dengue virus, a mosquito-borne virus that annually causes significant severe illness and death worldwide. The dengue vaccine, Dengvaxia, is a real-world trolley car dilemma. Dengvaxia presently can protect large numbers of patients from this deadly virus, but at the expense of causing severe illness and death in a much smaller number of patients, mostly children.

Dr. Rosenbaum describes our response to utilitarian thinking, correctly I think. We don’t mind utilitarian rules that negatively affect others, particularly when the rules tend to confer benefit to our group as a whole (the very definition of utilitarianism) but we resist utilitarian thinking when it threatens to affect us negatively as an individual despite overall benefit to the rest of our group. Healthy self-interest often conflicts with the utilitarian calculus that purports to determine the overall benefit to the group. In the case of Dengvaxia, if the deaths caused by the vaccine only occurred in people who would have died from the natural dengue virus anyway, there would be no problem. In other words, by golly, you all were going to die from the widespread disease anyway, and since the vaccine did save some of you from dying, there is really no new or additional loss. Net positive outcome, right?

Sadly, vaccines do not work that way. With Dengvaxia, it may be possible to create a pre-vaccine test for seropositivity for the virus. This would mean determining whether a person previously had a very mild case of the virus such that they would not suffer a catastrophic outcome from receiving the vaccine, thereby allowing them to safely receive the vaccine to prevent a more severe case of dengue in the future. Such a screening test may be possible but it would cost some unknown amount of additional money and would still not be 100% accurate. Even so, no vaccine is 100% safe.

How many lives would need to be saved and at what cost before we are satisfied with the cost/benefit ratio of Dengvaxia (or any vaccine for that matter)? Presently the World Health Organization is recommending a pre-vaccination test be developed and only vaccinate those who test positive for prior exposure. This is effectively saying that the vaccination is not only not required but not even presently recommended in endemic regions, this despite the fact that Dengvaxia clearly significantly reduces overall mortality and morbidity. If the disease were more contagious and more lethal than dengue, at what point does the vaccine, however imperfect, become mandatory? This is the ultimate trolley car switch for public health officials.

Aren’t trolley car dilemmas fun?