Deathbed Conversations
Jonathan Wispe, Duke Divinity: Theology, Culture and Medicine, Durham, NC, The Ohio State University Center for Bioethics and Human Values, Columbus, OH
This title denotes very difficult neonatal conversations which are morally complicated and emotional. Many include sincere disagreements about right or wrong actions. A great number of these conversations arise because of basic differences, a lack of coherence, in how faith or spirituality impact such moral decisions. Such non-coherence can occur within a single person or within a group. Non-coherence in deathbed conversations is the focus of this reflective essay. The first part of the essay describes how my own faith struggles impact my participation in deathbed conversations. The second part examines the role of guilt within families. In part three, I discuss a means of reestablishing coherence. My muses include Daniel Callahan, Alan Verhey, David Brooks and Annie Janvier.
In 1985, Callahan described his “declining religious faith and uneasiness about the right place of religion” in bioethics and his personal life. His concerns resonate with me because my comfort with Christianity is waning. I no longer find faithful solace or answers when facing neonatal grief, confusion and anger. However, I haven’t found a suitable replacement. As a result, I find myself overwhelmed emotionally, unable to steady myself and lead hard discussions. Without a solid foundation, I cannot provide compassionate and covenantal care for my staff and families. I ask myself, with Callahan, whether “those who share a lack of belief can still make use of some of the insights and perspectives of religion”? While maintaining the “honesty and courage of my convictions how can I borrow elements of my discarded garment” as I sit in suffering presence at a death bed?
I am joined in deathbed conversations by parents, family members and staff, however, this essay concerns only the parents. Parents are in varying states of shock, anger, and disbelief and all ask the question, why. Many look to their faith/spirituality for solace and answers. Janvier, writing as a Neonatologist and a NICU mother, describes her emotions including “despair, panic, anger and devastating guilt. Guilt is pervasive. I know everything mothers can invent to blame themselves for the premature birth. I know in my head that these reasons have no scientific basis. But I know that only in my head which refuses to connect to my heart, with my gut and with every fibre and cell of my being. I know that there must be a reason. I have to find that in order to know what to do, how to move on.” Janvier’s guilt was mostly medical: her cervix failed her baby. For others it arises from the perception that they did something wrong that resulted in their baby’s illness. For some the guilt arises from their Judeo-Christian understanding of sin. Consciously or not, real or not, they see themselves as being punished. However unwarranted, these struggles with guilt, whatever the source, is inescapable and unwinnable. Maternal guilt can devastate the maternal experience. Guilt, both maternal and paternal, heightens emotions including anger, shock and despair and effects discussions and decisions. Rarely am I able to convince a suffering parent that it is not their fault, even if I provide convincing medical information to the contrary. When faced with parents suffering Judeo-Christian guilt I am at a loss for words. I lack words because of my own faith struggles. It seems hypocritical on my part to try to speak to God’s goodness or discuss sin.
To find a space of coherence at the deathbed, I need a shared language and behaviors. This is not a search for the common moralities that many including Englehardt, Callahan and Verhey find unrealistic. Fortunately, my needs at the bedside are simpler. David Brooks, in his new book, speaks to my needs. He identifies “essential skills for being human”. He calls attention and accompaniment as “moral actions that bring people, emotions and situations in clearer focus”. Morality, he says, “is about how we interact with each other every minute”. For me, he is naming the essential words and actions of Christ. Are these the “bits of the lost garment” that I can use without hypocrisy?
Paraphrasing Callahan, my spaces of non-coherence are filled “with a salt that has lost its savor”. Perhaps I can regain that savor and restore coherence by remembering what Christ always teaches. Brooks calls this “seeing others deeply and being deeply seen”. Can remembering this help me bridge my own gaps in coherence and those with my partners at the bedside? I am hopeful.
In 1985, Callahan described his “declining religious faith and uneasiness about the right place of religion” in bioethics and his personal life. His concerns resonate with me because my comfort with Christianity is waning. I no longer find faithful solace or answers when facing neonatal grief, confusion and anger. However, I haven’t found a suitable replacement. As a result, I find myself overwhelmed emotionally, unable to steady myself and lead hard discussions. Without a solid foundation, I cannot provide compassionate and covenantal care for my staff and families. I ask myself, with Callahan, whether “those who share a lack of belief can still make use of some of the insights and perspectives of religion”? While maintaining the “honesty and courage of my convictions how can I borrow elements of my discarded garment” as I sit in suffering presence at a death bed?
I am joined in deathbed conversations by parents, family members and staff, however, this essay concerns only the parents. Parents are in varying states of shock, anger, and disbelief and all ask the question, why. Many look to their faith/spirituality for solace and answers. Janvier, writing as a Neonatologist and a NICU mother, describes her emotions including “despair, panic, anger and devastating guilt. Guilt is pervasive. I know everything mothers can invent to blame themselves for the premature birth. I know in my head that these reasons have no scientific basis. But I know that only in my head which refuses to connect to my heart, with my gut and with every fibre and cell of my being. I know that there must be a reason. I have to find that in order to know what to do, how to move on.” Janvier’s guilt was mostly medical: her cervix failed her baby. For others it arises from the perception that they did something wrong that resulted in their baby’s illness. For some the guilt arises from their Judeo-Christian understanding of sin. Consciously or not, real or not, they see themselves as being punished. However unwarranted, these struggles with guilt, whatever the source, is inescapable and unwinnable. Maternal guilt can devastate the maternal experience. Guilt, both maternal and paternal, heightens emotions including anger, shock and despair and effects discussions and decisions. Rarely am I able to convince a suffering parent that it is not their fault, even if I provide convincing medical information to the contrary. When faced with parents suffering Judeo-Christian guilt I am at a loss for words. I lack words because of my own faith struggles. It seems hypocritical on my part to try to speak to God’s goodness or discuss sin.
To find a space of coherence at the deathbed, I need a shared language and behaviors. This is not a search for the common moralities that many including Englehardt, Callahan and Verhey find unrealistic. Fortunately, my needs at the bedside are simpler. David Brooks, in his new book, speaks to my needs. He identifies “essential skills for being human”. He calls attention and accompaniment as “moral actions that bring people, emotions and situations in clearer focus”. Morality, he says, “is about how we interact with each other every minute”. For me, he is naming the essential words and actions of Christ. Are these the “bits of the lost garment” that I can use without hypocrisy?
Paraphrasing Callahan, my spaces of non-coherence are filled “with a salt that has lost its savor”. Perhaps I can regain that savor and restore coherence by remembering what Christ always teaches. Brooks calls this “seeing others deeply and being deeply seen”. Can remembering this help me bridge my own gaps in coherence and those with my partners at the bedside? I am hopeful.