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.

Human limitation and ethics

By Steve Phillips

I recently read Cody Chambers’ article “The Concept of Limitation in Emil Brunner’s Ethics” in Ethics in Conversation from the Kirby Laing Institute for Christian Ethics. The article is well done and you need to read it to get the full impact of what he has said. What resonated with me was the idea that being limited is a part of what it means to be human and that our limitations are essential for our relationship with God and each other. It is our limitedness that helps us see that we need both God and other people and that we were made for those relationships. This is central to ethics because it is in our relationships with God and other people that we find our understanding of what ethics is.

This understanding that we are in our nature limited beings created by an unlimited God could not be more different from the conception of human beings held by many in the culture around us. They desire to see human beings and particularly themselves as having unlimited potential and freedom with no creator at all. That desire for personal freedom dominates contemporary ethics and shows itself in all areas of bioethics.

Chambers looks at how this impacts thinking about gene editing. Those who advocate doing human germline genetic modification see it as the freedom to create a child who is made to be what the parents creating the child desire the child to be. This is usually expressed in terms of creating a child free from genetic disease, but there are simpler ways to have a child without a disease carried by the parents (including adoption). It is ultimately the desire to be free of natural human reproductive limitations and create a child we have designed and chosen. Being limited helps us to see that we need each other and must respect others, including our children, as they have been made by God. Our natural lack of control over the characteristics of our children leads to an understanding that those children are a gift from God that we should accept unconditionally. Using technology to try to take control of the creation of our children leads to creating children that will fulfill our desires and a loss of the unconditional acceptance that is the foundation of a positive parent-child relationship.

Freedom in the proper context is good. The desire for unlimited freedom leads to putting ourselves above others and ultimately controlling and subjugating others, including our children, to our desires. Proper ethics requires an understanding that our freedom is limited.

Risk and reproductive freedom

by Steve Phillips

A recent article in The Atlantic titled “The Overlooked Emotions of Sperm Donation” discusses concerns about the emotional problems and conflicts that can occur in families that turn to sperm donation is a way of creating a child amid infertility. The article focuses mostly on heterosexual couples dealing with male infertility who have used sperm donation. In those families there are commonly emotional problems faced by the man when the couple has a child to which he is not genetically related, and there are problems that can occur between the couple who is raising the child and the sperm donor and his family when a known or related donor is involved. The author expresses concern that many couples who choose sperm donation are not aware that these emotional problems can commonly occur and fail to reflect carefully about these concerns or do preventive counseling to deal with them.

The article is well-written and raises concerns that people need to be aware of, but there are some things that are missing. The author briefly addresses the emotional concerns of the child and mentions that there have been some children’s books written to help children deal with those concerns, but the emotional difficulties for a child conceived in this way are very significant. There is also no discussion of whether concern about the emotional difficulties for all the parties involved including the child, the parents raising the child, and the donor and his family might be a reason to consider not having a child by means of sperm donation. There is an underlying assumption of reproductive freedom, the idea that people should be free to fulfill their desire to have a child by any means that they choose. The author properly advocates for the position that potential parents considering this option should be fully informed about the emotional risks as well as any physical risks and should consider preventive counseling, but never mentions the possibility of deciding not to create a child in this way because of the risks.

When we discuss the risks of reproductive technologies, whether those be physical risks or emotional risks, we need to remember that imposing risks on a child to fulfill the desires of an adult individual or an adult couple is a serious moral concern. Despite our society’s focus on autonomy, there are some things we should not do to meet our own desires when doing so puts another person at risk, particularly if the person being put at risk is a child that we are creating.

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.

Choosing to die

When people present an argument for the moral permissibility of euthanasia they commonly start with a case in which a person is suffering from a terminal illness and has uncontrolled pain. They say that we should have no moral reason to say that it is wrong to assist those in such a condition who choose to end their life as a means of ending their suffering. This is a combination of two arguments. One is the argument from compassion that says that we have a moral obligation to minimize suffering and that euthanasia should be used if it is the most effective way to eliminate a person’s suffering. The other is the argument from respect for autonomy that says that people should be able to make decisions about their own lives, which should include the decision to end their lives, and that their physicians should respect those decisions. It has been pointed out by many who take the position that euthanasia is wrong that if these are good arguments for the permissibility of euthanasia they should be able to stand on their own. If we take these arguments individually, they lead places we should not want to go.

A couple of weeks ago I wrote about the concerns that many who live with disabilities have regarding the argument from compassion. It says that it can be the right thing to do to end a person’s life when that life is no longer worth living. They are concerned that if they become unable to make their own decisions someone will decide their lives are not worth living and they will be euthanized nonvoluntarily.

A recent case of joint euthanasia by a married couple in their mid-nineties in Canada reported in the Globe and Mail shows what can happen when the argument from respect for autonomy is taken by itself. George and Shirley Brickenden, who had been married for nearly 73 years, choose to die together. They died by lethal injection while lying on their bed holding hands in the presence of their children and clergyman. There was question about whether they both met the criteria of the Canadian law, which requires that the person receiving assisted death be suffering intolerably from a grievous and irremediable condition and that death is reasonably foreseeable. Even though Shirley suffered from long-standing rheumatoid arthritis and heart problems and George had recently begun having fainting spells from a heart rhythm problem, the primary reason for choosing euthanasia was that they did not want one of them to die and leave the other behind.

If the argument from compassion is a reason to accept euthanasia then we must accept nonvoluntary euthanasia in spite of the concerns of those with disabilities. If the argument from respect for autonomy is a reason to accept euthanasia then we must accept euthanasia for any reason given by a rational person including the desire of a married couple not to have one spouse survive longer than the other.

Rather than going to these extremes it seems reasonable to accept that there are limits to the things we ought to do to diminish suffering and there are limits to how far we should go in respecting a person’s autonomy. The intentional killing of an innocent person lies outside those limits.

Euthanasia and those who live with disabilities

This week the students in the medical ethics class that I teach are looking at the issue of euthanasia and physician assisted suicide. An article in The Catholic Register reminded me of the important role that people with disabilities have played in the public discussion of euthanasia. The article discusses the concerns that Taylor Hyatt, policy analyst and outreach coordinator for the disability rights group Not Dead Yet, has expressed about assisted suicide in Canada. She is concerned about proposals being considered to expand the Canadian Medical Aid in Dying (MAiD) law “to include mature minors, allow advanced directives for those with a dementia diagnosis, and allow MAiD for those with psychological suffering without the necessity of death being reasonably foreseeable.” She also expressed concern that under the present law no one is looking to see if those seeking assisted death have unmet accessibility needs that are pressuring them to end their lives.

From the earliest discussions about legalizing physician assisted suicide in the US, disability rights groups have played a significant role. They recognize that with any form of euthanasia the physician who chooses to assist in causing another person’s death must agree that the person’s life is not worth living. If we say that it is ever permissible for one person to say that another person’s life is not worth living, then it opens the door to people thinking that a the life of a person with disability is not worth living and that it would be best if that person’s life would be ended. Thus, even fully voluntary euthanasia puts those who are disabled at risk for nonvoluntary euthanasia. Actually many more than those with disabilities are at risk, but the marginalization that they experience makes them more sensitive to the risk.

We should listen to them.

The death and resurrection of Jesus and how we view death

This is the week when we who are Christians particularly focus on the death and resurrection of Jesus. As I have been reflecting on this I have been thinking about how Jesus’ death and resurrection impact how I think about bioethics. I think that the largest impact is on how I think about death.

Whether we realize it or not, much of bioethics is impacted by how we view death. This is most clear when we are thinking about end-of-life issues. Some of the most difficult medical decisions that people must make are related to how aggressively we should try to prevent death and when we should accept the inevitability of death and focus on palliative care. However, it also impacts beginning of life and reproductive issues, because many times those issues are significantly impacted by our understanding of who has the type of moral status that says we should not cause the death of that person. It is also the foundation of transhumanist desires to go beyond the limitations of human mortality.

How does Jesus’ death impact how I think about death? It reminds me that death is the result of evil and may involve deep suffering. It was not a part of God’s original good creation but is a part of the brokenness of that creation caused by human sin. It reminds me that we have a God who understands what it means to suffer and die and can truly love us with a compassionate love. Jesus’ resurrection reminds me that he not on the understands death but has defeated it. We who follow him can know that death is not the end. We have a hope that goes beyond death that changes how we think about it.

Understanding God’s compassionate love for us can help us live with a deeper compassion for those around us. Having a hope that goes beyond death and an understanding that there can be meaning in suffering allows us to face the reality of our own deaths without fear. When we are at peace with our own death we can better help others, who are dying. We can understand that death itself is evil and that it is good for us to develop medical treatments and administer them to people in order to prevent death, but also understand that preventing death is not our ultimate goal because we can have a relationship with God that is eternal.

Psychiatric advance directives

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.

Does the possibility of misdiagnosis make the concept of brain death invalid?

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?