Professor seeks to draw attention to perinatal hospice care

Professor seeks to draw attention to perinatal hospice care

Professor seeks to draw attention to perinatal hospice care

Aaron D. Cobb. (Credit: Courtesy to Crux.)

Aaron D. Cobb is the author of "Loving Samuel," the story of the experience of loving his son, who was diagnosed in utero with a chromosomal abnormality which led to his death just hours after his birth.

[Aaron D. Cobb is Associate Professor of Philosophy at Auburn University at Montgomery. He is also the author of Loving Samuel, the story about the experience of loving his son, who was diagnosed in utero with a chromosomal abnormality which led to his death just hours after his birth. His latest book, A Virtue-Based Defense of Perinatal Hospice, is directly related to his experience. He spoke to Charles Camosy.]

Camosy: I want to get into your book on perinatal hospice, but first tell us a bit about yourself. How did you end up where you are today?

Cobb: I’m currently an associate professor of philosophy at Auburn University at Montgomery (AUM). I’ve been fortunate to work for nearly ten years in a great department with extremely supportive colleagues. In terms of my academic background and training, I earned a B.A. in Psychology and Philosophy at Greenville University, an M.A. in Philosophy at Western Michigan University, and a Ph.D. in Philosophy at Saint Louis University.

But if you want to know about the people who have exercised the greatest influence in my life, I would need to talk about my family of origin and my own family. I am the son of missionary parents, spending the first ten years of my life in Rwanda, Africa. My dad was the director of a school; my mom was a nurse at the mission hospital; my brothers and I grew up in a community of missionaries and Rwandan friends. These formative years of life have played a significant role in shaping my outlook. Moving to my own family, my wife, Alisha, and I celebrated our eighteenth anniversary this past summer. Our son Micah is twelve years old and an absolute gift. My second son, Samuel, was diagnosed in utero with trisomy 18 and lived for just a few hours after his birth in 2012. He, too, is a gift to our family.

I did undergraduate and graduate work in philosophy of religion, but now do theology, so I’m particularly interested in how your deep religious commitments may have been related to your decision to become a philosopher.

I began college thinking that I would become a musician. I quickly learned that this wasn’t the best fit. For a while, I thought I might pursue a career as a counselor. But during my junior year, I sensed that I really couldn’t pursue this path either. At the time, I was taking a philosophy class and I expressed some of my concerns to my professor, Dr. Craig Boyd. He reminded me of the scene from Chariots of Fire where Eric Liddell tells his sister that he intends to return to his work as a missionary, but he needs to run for the Olympic team. He tells her that he feels God’s pleasure when he runs and that he has to honor this passion. Dr. Boyd asked me what areas of study enabled me to feel God’s pleasure. The answer was clear: I needed to pursue philosophy. I had no idea what that would mean or what I would need to do to fulfill this call. Frederick Buechner describes a vocation as a place where a person’s “deep gladness and the world’s deep hunger meet.” My hope is that my work as a philosopher can satisfy this view of vocation.

OK, you have a new book out defending perinatal hospice. It is a carefully argued academic book, but I suspect it is at least partially motivated by a personal event in your life you recount in another book titled Loving Samuel: Suffering, Dependence, and the Calling of Love. Can you say more about what motivated you to write these books?

Loving Samuel is a memoir about the experience of loving our son, Samuel, after he was diagnosed in utero with trisomy 18. I began writing little reflections during the pregnancy as a way of processing my grief and expressing my love for him (and for my wife whose courage and grace was remarkable). I initially had no intent of sharing these reflections, but I began to share them with a few friends and family as a means of sharing our joy in his ongoing life and providing a common vocabulary for our faith in the midst of sorrow. I continued to write after Sam’s death and, eventually, some of my friends convinced me that I should bring the various reflections together in a book. The book weaves together our narrative with reflections on human vulnerability, suffering, friendship, and the virtues. My hope is that others who suffer might find some comfort in this work.

The new book, A Virtue-Based Defense of Perinatal Hospice, is directly connected with our experiences. Perinatal hospice is a relatively new modality of care for families who receive an adverse in utero diagnosis. Although there were no formal programs in Alabama at the time of our diagnosis, we developed a plan of care consistent with the basic principles. As I have reflected on his care, I became convinced that more people ought to know about perinatal hospice.

Families who receive an adverse diagnosis experience various forms of pressure—either personal or structural—to terminate the pregnancy. They are often unaware of this important form of care. Given the novelty of perinatal hospice, there is very little literature on this modality of care. Furthermore, the existing literature has been framed almost entirely in terms of abortion debates. Additionally, perinatal hospice had become a political issue. There were (and are) active legislative efforts to ensure that families have access to information about perinatal hospice immediately upon the delivery of an adverse in utero diagnosis. As you can imagine, these efforts tend to be construed as attempts to place burdens on women and families who are already in shock following an adverse diagnosis.

In my view, all of these discussions miss some of the most important dimensions of the care provided through perinatal hospice programs. So, both the initial motivation for writing the book and some of the insights within the book are rooted in our experience. My hope is that this work will portray some of the profound value of perinatal hospice for families like ours.

Implied in the title of your new book is that perinatal hospice is under attack. What are these attacks and where are they coming from? Can you give us a broad outline of your defense?

I’m not sure I would say that perinatal hospice needs a defense because it is under attack; I think it needs a defense because there have been very few attempts to provide a substantive account of a wide range of goods realized through this form of care. As I noted above, the initial discussions of perinatal hospice have almost invariably been framed in terms of political debates about abortion.

This politicization of perinatal hospice may undercut support for a form of care that ought to enjoy support for individuals across the ideological spectrum. Too often, promotion of perinatal hospice has been construed as weapon within broader culture wars. Given the political framing of the issues, it is very difficult to get a sense for the value of perinatal hospice independent of its status as either an alternative to abortion or a means of respecting choice. So, I thought perinatal hospice needed a philosophical defense that could shed light on its intrinsic value as a form of care. I also hoped to show that a philosophical defense of perinatal hospice does not require commitment to specifically Christian premises.

In broad outlines, my book argues that perinatal hospice is a valuable form of care because it manifests virtues that are crucial to addressing profound human needs. I develop profiles of four specific virtues: Hospitality, hope, solidarity, and compassion. These virtues display themselves through a characteristic sensitivity to and caring concern for individuals with significant needs.

Furthermore, I maintain that one can ascribe these virtues to individuals, communities, and institutions. The application of this framework is straightforward: perinatal hospice teams are engaged in a good common project of addressing the needs and vulnerabilities of families who have received an adverse in utero diagnosis. To the extent that this collective effort addresses the family’s needs for welcome, meaning, accompaniment, and consolation, commitment to this project manifests the virtues of hospitality, hope, solidarity, and compassion.

The final chapter of the book wrestles with the social and political implications of the arguments I present in the heart of the book. I note a range of barriers to the development and delivery of this form of care and contend that a concern for virtue should move us to address these barriers through the creation of structured programs of care.

You and your family demonstrated so much love in resisting throwaway culture with regard to Samuel – but it must have been a terribly painful experience. Remarkably, you recently managed to open your hearts up again to another child via adoption but had another terribly painful experience: This time of the biological mother deciding to parent at the last minute. This after you had spent months and months preparing for the child’s arrival. How are you holding up through all of this? What keeps you holding up through all of this?

My wife and I have talked about adoption for a number of years. We’ve watched our extended families transformed by the joy that comes through adoption. Three of our nieces and one nephew are adopted. After Sam’s death, it took some time for us to commit to this path. We knew that opening our hearts to adoption was going to require us to make ourselves vulnerable again. This most recent loss wasn’t the vulnerability we imagined. Although we won’t be able to bring this particular child home, we are still in process and we hope to be matched sometime in the next six to eight months. That we still have this hope is a comfort to us. Nonetheless, we are grieving this loss.

In the past two weeks, I have found some comfort in my thoughts about the child and her mother. It is likely that the only way her daughter could have received a life-sustaining medical procedure after birth was by being in an orphanage. My guess is that the mother loved her dearly and wanted her to receive care; she did not want to abandon her. She took a great risk in identifying herself to officials two-and-a-half years after abandoning her daughter.

The hopeful story we are telling ourselves is that the mom must have learned that her daughter was about to be adopted and it broke her heart. I understand that love and, if this story is anywhere close to the truth, I can’t imagine how much courage it took for her to identify herself. There is a small bit of comfort in the thought that our decision to say “yes” to this referral may have had some role to play in reuniting a daughter with her mother. I also take some comfort in the thought that we have prayed for her and her wellbeing. I don’t think these prayers are wasted. I will continue to pray for her as I do for Micah and Samuel.

Finally, I would say that our understanding of adoption as a calling has been helpful. We saw our opportunity to welcome and love Samuel as a vocation. There is deep meaning and joy in fulfilling a call even when it demands much from you. The calling to adopt is similar: we know it will likely continue to demand much of us. Nonetheless, there is joy and meaning in responding to this call. We hold out hope that we will be able to see glimpses of this joy and meaning even now as we grieve.


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