Even though I teach bioethics and teach about advance directives, I was not aware that there was such a thing as a psychiatric advance directive until I read this article in the online magazine STAT, which I found while browsing the articles listed on Bioethics.com.
The concept of a psychiatric advance directive makes so much sense that I am amazed that I hadn’t thought about it or read about it before now. Psychiatric advance directives allow people with a psychiatric illness that causes them at times to be incapable of making decisions about medical care to make and record decisions about treatment during times in which their disease is under control and they have capacity to make those decisions. This allows them to consent in advance to much needed treatment which they might refuse during times of incapacity and give direction on what treatments they would not consent to during those times of incapacity. It allows people with psychiatric illness to have control over their own lives that they commonly lose when the illness takes away their decision-making capacity. It can also help assure that they receive treatment from those that they know and trust.
This is something that many of us who are not psychiatrists need to be aware of so that we can encourage patients to take control of their own care in a positive way. When I investigated this, I discovered that my own state, Indiana, has a law regarding psychiatric advanced directives that makes them legally recognized and outlines the proper way to make such a directive. The National Resource Center on Psychiatric Advance Directives is an excellent resource on this issue.
This is something people need to know about.
Recently I read the detailed account of what has happened with Jahi McMath, titled “What Does It Mean to Die?” in the most recent issue of The New Yorker. It made me reassess what I think about the concept of brain death. Four years ago, Jahi McMath was a thirteen-year-old African American girl who had a tonsillectomy to treat severe sleep apnea. She had a cardiac arrest due to postoperative bleeding with a prolonged 2.5-hour resuscitation and ended up on a ventilator. She was later determined to meet the criteria for brain death, but her family refused to allow her to be taken off the ventilator. They had serious concerns that she had not received the care she should have received prior to her arrest and had little confidence in the doctors or hospital that were telling them that she was dead. Four years later her vital functions continue to be maintained on a ventilator and some medical experts are convinced that she no longer meets brain death criteria and may be in a minimally conscious state.
When I think about the concept of brain death, what is important in accepting it as a valid way to determine that a person is dead is that brain death involves both loss of function of the entire brain including the brain stem and that the loss of function is irreversible. Accepting that loss of cognitive function alone could define death puts anyone with impaired cognitive function at risk of being treated as if they were dead. Loss of brain stem function is more closely related to the functions of the brain that keep us alive and fit better with the determination of death. However, it is critical that this loss of entire brain function is irreversible. We do not consider a person in cardiac arrest who is able to be resuscitated to be dead, because that person’s loss of heart and lung function is reversible. This case calls into question whether we are able to determine that loss of complete brain function is irreversible.
It appears to be quite possible that this girl who was diagnosed as being brain dead did not have the irreversible loss of complete brain function that is essential for the definition of brain death. It is recognized that the criteria for diagnosing brain death are different in children and adults and that the diagnosis may be more difficult to make in children. Her case leaves us with some significant questions. Are the criteria that we have for determining a diagnosis of brain death accurate enough in predicting the irreversibility of loss of whole brain function to be reliable in making the diagnosis? Do we need absolute certainty in diagnosing brain death? Every decision we make in medicine involves some uncertainty. Diagnoses are seldom absolute. We make life or death decisions with limited information. People die due to inaccurate diagnoses even when everything has been done properly and the diagnosis has been made with all due care. Sometimes, despite our best efforts, we are wrong. Is diagnosing brain death any different from other life or death decisions we make? How much inaccuracy can we accept in the diagnosis of brain death?
A recent article in the Daily Mail brought my attention to recent research by the British assisted reproduction scientist Simon Fishel (see abstract) on a technique which can help select which early developing embryos produced by IVF are most likely to result in a live birth when they are implanted. This technique in evolves repeatedly photographing the developing embryos and using a computerized process to assess which embryos are showing the developmental characteristics that are associated with successful live birth. The study indicates that they were able to achieve a 19% increase in the number of live births in women under age 38 and a 37% increase in live births in women over age 37 by using this technique compared to conventional ways of selecting the healthiest appearing embryos.
On the surface the study appears to be about a simple process for making a particular form of biotechnology more effective and more efficient. What caught my eye from an ethical standpoint was the way in which this study demonstrates how biotechnology is so completely focused on the fulfillment of human desires that it tends to ignore any other concerns. The human desire that drives infertility treatment is the desire to give birth to a baby. The study shows how a particular improvement in technique makes it possible to fulfill that desire in a higher percentage of patients. What is interesting is that the focus on fulfilling that desire is so complete that there is no mention of what happens to the embryos that are not selected when their photographs are input into the computer-generated profile for selecting the best embryos. It also says nothing about whether the babies who are born using this process are healthier or less healthy than those using conventional techniques. The sole focus is on whether the desire to give birth to a baby is fulfilled.
Having technology that can help us fulfill our desires can be beneficial, but effective technology tends to be very focused on what it accomplishes. Life and particularly the moral life is more complex than that. We need to evaluate our desires to see if they are worthwhile. We need to consider what effects it may have on others if our desires are fulfilled. Since technology is successful when it fulfills our desires it may lead us to think that we are doing well when we have effective ways to fulfill those desires, without stopping to consider whether our desires and the means that we choose to fulfill them are good.
We live in a culture in which moral relativism, or what some would call moral individualism, seems very inviting to many. This is not a new thing. Twice in the book of Judges the writer says about the people of Israel that “everyone did what was right in his own eyes.” (Judges 17:6 and 21:25) This happened to Israel because they, like us, were fallen human beings more interested in themselves than anyone else and because of their tendency to absorb things from the cultures of the nations around them. However, they had been given something better than this.
Before his death and in preparation for the nation of Israel crossing the Jordan river to take possession of the land that God had promised to them, Moses reminded God’s people that God had given them something even more important than the promised land. He had given them his law. He let them know that when they lived out the commands that God had given them the nations around them would take notice and say about Israel “Surely this great nation is a wise and understanding people.” (Deuteronomy 4:6)
Think a little about what Moses was saying. The nations around Israel were living by the relativistic principle of everyone doing what was right in his own eyes, but they would recognize that living according to God’s objective moral commands made Israel a wise and understanding people. Even though many today live according to moral relativism, those who look at ethics more closely realize that ethics is meaningless without some type of objective standards. Few still follow the course of the skeptics. Even the utilitarians who dominate modern secular ethics hold to objective principles that allow them to say that it is better to do what is best for everyone than to simply do what is best for oneself.
It is also interesting, however, that it was not Israel’s eloquent proclamation and rational defense of God’s commands that would impress the surrounding nations. It was what the nations would see when they observed Israel living in obedience to God’s commands that would convince them of the wisdom of those commands.
We who understand God’s objective moral truth need to be ready to express those truths clearly, but it is living by those truths that will impact the world around us.
After writing about how the events of the first Christmas influence how we think about personhood I read something that made me realize how distorted some of the views of personhood are in our society. I was reading an essay by James Toomey in the Hastings Center Bioethics Forum titled “Is Noninvasive Prenatal Genetic Testing Eugenic?” Toomey was responding to an earlier article by Vardit Ravitsky in which Ravitsky draws on a disability rights argument to say that the promotion of widespread prenatal testing and abortion as a means of reducing the societal burden of genetic disease is morally problematic and a form of eugenics in its negative sense. Toomey says that Ravitsky’s concern is not valid.
Setting aside the moral concerns about abortion done for any reason, the thing that struck me was one of Toomey’s arguments. He says that reducing the number of people with genetic disorders by prenatal testing and abortion “is closer to a cure than an assault on personhood.” He says that “narrative or social identity is what we care about when we think about personhood.” Therefore, if a couple plans to have a child, conceives, discovers the child will have Down syndrome, aborts the child, and then conceives again and gives birth to a child without Down syndrome, he says this can be seen as involving a single person who has been cured of Down syndrome. He claims this removes the eugenic associations from prenatal testing to reduce the number of people in society with a disorder such as Down syndrome.
Saying that the two children in this scenario, one aborted and one brought to birth, can be considered one child even though they are genetically distinct and conceived at different times is a serious problem with this view of personhood. We live in a time in which people believe at once the contradictory ideas that the only things that are real and knowable are those things that are material and empirically verifiable and that human persons are completely nonmaterial entities defined by narrative and social identity. The latter leads to this bizarre idea that these two distinct children, one dead and one living, are one person. The first leads to other problems.
It turns out that this is another place in which our understanding of Jesus can help us understand who we are as human beings. The early church had to deal with heresies that said that Jesus was either physically real but not divine or divine but not a physical being. The early creeds addressed these ideas by asserting the biblical truth that Jesus was both a physical and spiritual being who was at the same time fully human and fully divine. In a similar way human beings are composed of intimately connected material and immaterial aspects of who we are. Denying either of those aspects of our being leads to great misunderstanding of who we are. Not understanding who we are leads to poor ethical judgments.
One of the most interesting details of the account of Jesus’ birth in the gospels is what happened when Mary visited her cousin Elizabeth. Luke tells us in the first chapter of his gospel that Elizabeth and her husband Zechariah were infertile and beyond their childbearing years. The angel Gabriel appeared to Zechariah and told him that he and his wife were going to have a son who would prepare the way for the coming of the Lord. Elizabeth did indeed become pregnant and when she was in her sixth month the same angel appeared to Mary and told her that she was going to conceive a son, Jesus, who would be the Son of God. Immediately after this, Mary went to stay with Elizabeth. When she greeted Elizabeth her fetus, who was later known as John the Baptist, leaped for joy in Elizabeth’s womb.
This account raises some interesting thoughts about the personhood of the unborn. Luke is clearly saying that John, who was at this time a 6-month fetus, had the spiritual insight to recognize Mary as the mother of Jesus. That would indicate the Holy Spirit was already working in the life of John before he was born and it would be hard to say that he was not a person when this occurred. He was already beginning to fulfill his role as the one who would announce the Messiah when he was 3 months from being born.
Less clear, but even more interesting, is the unstated possibility that what John was responding to was the presence of Jesus himself. If Jesus was conceived shortly after the angel appeared to Mary, and she went immediately to stay with Elizabeth, Jesus would have been an embryo at the time of John’s leaping for joy. If John as a fetus was responding to the presence of Jesus as an embryo, we have reason to confirm the personhood of a human embryo.
Whether John was responding to the presence of Mary or the presence of Jesus, it is the incarnation of Jesus that provides one of the strongest reasons for us to understand that every human being has great worth. Every human being has great value because each one is made in the image of God, but the incarnation tells even more. That fact that Jesus became a human being elevates human beings to a value above other created beings. Since we have been told that he was conceived in Mary’s womb, he grew as an embryo and fetus before being born in Bethlehem and has elevated the value of the unborn as well as those who have been born.
God bless us every one, including those who are not yet born.
A recent Breakpoint article led me to read an opinion piece on nbcnews.com by Travis Rieder, a research scholar with the Berman Institute of Bioethics at Johns Hopkins, titled “Science proves kids are bad for Earth. Morality suggests we stop having them.” Rieder references several articles that indicate that the most effective way that individuals, particularly those in affluent societies, can reduce their impact on climate change is by having fewer children. The articles that he references suggest that having fewer children would have a much bigger impact than any conservation measures that we might take.
It is important to be clear that in spite of the title of the article Rieder is not advocating that we have no children or that there should be a specific limit on how many children people have. However, he is saying that each child that we bring into the world represents a negative impact on our environment and that we have a moral obligation to consider that harm in our moral decision-making about having children. He deals with some possible objections to his position in which include concerns about whether a child’s environmental impact is the responsibility of the child or the parent, and the idea that individual actions place such a small role in global issues such as climate change that they are insignificant.
However, I think that he fails to consider the most significant objection to his position. By suggesting that the net effect of having a child can be considered a moral harm, he is failing to consider the immense value of an individual human life in his reasoning. This is primarily because he is seeing moral decisions consequentially. One of the failings of consequential or utilitarian moral thinking is to look only at measurable consequences and to neglect the more difficult to measure value of individual human lives. The immeasurable value of a human life makes it difficult to see the act of bringing a child into the world as something that involves more harm than good. There may be some situations in which it is morally proper to decide not to conceive a child with a high likelihood of intense suffering. Beyond that the value of a human life is greater than presumed consequences.
My wife is a writer. She writes everything from murder ministries, for which I am occasionally the in-house consultant, to a humor column and, of course, a blog. For years she has written a column at this time of year about the weird things that she is thankful for. You can read this year’s list here.
I am not the accomplished writer that my wife is. What I do write is usually about ethics and medicine. I also like to reflect at this time of year about what I am thankful for. The other day I received an invitation to the 40th year reunion of my medical school class which will be held next May. That got me thinking about what I have experienced over nearly 40 years of being a physician.
When I look back, the thing that I am most thankful for is the opportunity to be involved in the lives of those who have been my patients. Medicine is a relational profession. The people that we care for allow us to become intimately involved in their lives. No matter how much technology we employ it is the relationship between a person in need in a person with the training and skills to help with that need that is the foundation of the medical profession. My patients have allowed me to share with them their joys and their sorrows. I have shared the joy of a new life coming into the world and the joy of recovery from a serious illness. But the most meaningful times have been those in which there was very little that I could do beyond being there with those for whom nothing more could be done and letting them know that I cared about them.
I thank God for the opportunity to share in the lives of those who have chosen to call me their family doctor.
In honor of the 500th anniversary of the beginning of the reformation I have been reading the new biography of Martin Luther by Eric Metaxas. One of the things that caught my interest was the role the theology of the human body played in the reformation. That is something that significantly impacts Christian bioethics.
The 95 theses that Luther posted for academic debate 500 years ago related to the issue of the church selling indulgences, but there are many deeper underlying issues that Luther and the reformers were addressing. Primary were issues about the authority of scripture and believers receiving salvation directly from God by grace. However, there were also issues about the unity of Christian believers that were very significant. The church of Luther’s day had drifted into many thoughts and practices that conflicted with the clear teachings of scripture. One of those was the establishment of two separate classes of Christian believers. One consisted of priests, monks, and nuns who were considered to be spiritually superior and the common people who were far below them. This was manifested ritually in priests taking both the bread in the wine in the Eucharist, while the people only received the bread. It was also represented by the priests, monks, and nuns being expected to be celibate, while the common people married and had children. There is certainly a scriptural place for singleness and celibacy in serving God, but Luther understood that this elevation of celibacy as being spiritually superior was a result of ideas about the human body and sexuality that had found their way into the church from Greek philosophy rather than biblical teaching.
Greek thought saw the spiritual and immaterial as good and saw the physical as evil. This concept which did not have a biblical foundation led to the church seeing the human body and particularly human sexuality as evil, which made celibacy spiritually superior. As Luther began to recognize that all Christian believers were on equal standing before God because our relationship with him was based on God’s grace alone, he understood that the incarnation of Jesus meant that the physical nature of human believers had been redeemed and restored to its original state at creation which was good. That meant human sexuality, marriage, and bearing children were also good as a part of redeemed creation.
Understanding that God created human beings as an integrated whole composed of both physical and spiritual parts, and that human sexuality, marriage, and childbearing were designed by God as good parts of his creation are very important parts of the Christian world view that impacts how we think about what is right and wrong. We do wrong when we misuse the physical part of ourselves and do things that are outside of how God designed us to live. We do what is right when we follow his plan for marriage and family.
A recent article in Newsweek reports on a physician, Dr. Jennifer Snyder, who is calling for the formation of a registry of egg donors to help determine the risks to women who “donate” eggs to other women undergoing IVF for monetary compensation. Her motivation in calling for this registry was the death of her daughter at age 31 from cancer after donated eggs on three occasions. She points out that egg donors are commonly told that there are no known long-term risks of egg donation, but that the reason that there are no known long-term risks is that the risks of egg donation have never been studied.
The article reports that Alan Penzias, chair of the practice committee at the American Society of Reproductive Medicine, agrees that such a registry is needed, and states that “national reporting on IVF, including data on both mothers and babies, is required by law.” It is good that this representative of those who practice reproductive medicine is in favor of a registry to assess the risks of egg donation, but there is a problem with his statement about the current reporting that is done on IVF in the United States.
That reporting on IVF is done under the authority of the CDC by the National Assisted Reproductive Technology Surveillance System. According to their National ART Surveillance website what they measure to comply with the Fertility Clinic Success Rate and Certification Act is data about patient demographics, patient stature: medical history, parental infertility diagnosis, clinical parameters of the ART procedure, and information regarding resultant pregnancies and births. The outcomes data is limited to information about the percentage of IVF cycles that achieve pregnancy and achieve live birth and information on how many of those pregnancies are single or multiple gestations and how many are delivered prematurely or at term. No data is collected on the complications or ill effects that women who undergo IVF may experience, and no data is collected on either birth defects or any other adverse consequences other than prematurity, birth weight, and plurality for the infants born by way of IVF.
Dr. Snyder’s call for a registry for data on adverse effects experienced by women who donate eggs is absolutely necessary to be able to give women the information needed to be able to make an informed decision about being an egg donor. There is an urgent need for the same type of registry of adverse outcomes for women who undergo IVF and the children produced by IVF. It is inexcusable to expect women to consent to these procedures without knowing the risks because those who perform the procedures have failed to collect data about those risks.