Making Faithful Decisions at the End of Life (Nancy Duff) -- A Review
MAKING FAITHFUL DECISIONS AT THE END OF LIFE. By Nancy J. Duff. Louisville: Westminster John Knox Press, 2018. 134 pages.
People don't like talking about dying. There is something unsettling about such conversations. If you talk about it, death might come. If you ignore it, well maybe you keep it at bay. Unfortunately, everyone will face the prospect of dying at some point. More likely than not we will experience the deaths of loved ones. It might be parents or a spouse or a child, a sibling or a friend. As a pastor I have stood with many a family as they said goodbye to a loved one. I have been in the room with a church member, when the ventilator was turned off and the last breath was taken away. Deciding to "pull the plug" is always difficult, especially if we've not had the conversations about what to do when life is no longer sustainable (without the aid of a ventilator). While I have had conversations about end of life decisions, I know that more could have been had. It's just that such conversations are difficult. Fortunately, there is help available.
Making Faithful Decisions at the End of Life is a brief book, but a powerful one. My clergy group, which recently read Atul Gawande's Being Mortal: Medicine and What Matters in the End has chosen it to read this coming year. The author is Nancy Duff, the Stephen Colwell Associate Professor of Christian Ethics at Princeton Theological Seminary. It is written as a Christian perspective concerning the question of when to resist death and when to accept it. Her goal in writing the book is to encourage "Christians to talk about death with their families and friends and with other Christians or people of other faiths or no faiths or no faith whose perspectives they value" (p. 2). While this is a book written by a Christian for Christians, as a Christian who is heavily engaged in inter-religious conversations, I believe that one needn't be a Christian to benefit from reading this book. That is the author's feeling as well.
The book is composed of five chapters, beginning with the question of when to resist and when to accept to death. In this opening chapter she develops these two seemingly conflicting concerns. At one level death is the enemy to be resisted. This is the view that many physicians have embraced. Their job is to save lives, and often, left to their own devices, they will continue treatments even though such treatments may cause unnecessary suffering or a meaningful death. She speaks of this concern, both relating to the medical side of things and the legal side, taking note of important cases such as Karen Quinlan and Terri Schiavo. In some cases, it was the hospital that wouldn't end efforts that kept a person alive artificially, despite family request to do to otherwise. On the other hand, it was families who wouldn't let go. The questions that abound concern who gets to make difficult choices, and each case is complex. Death is the enemy, and yet death will come our way. Thus, how do we accept it. Death may be natural, but it's not beautiful or something to be sought after. There are questions of autonomy that must be addressed as well as malfeasance.
In chapter two Duff addresses five basic Christian beliefs. First death is the enemy and yet death is to be accepted. Second, Christian ethics is contextual and thus negates absolute rules that apply in every case. Third, there is the question of the importance of bodily life. Fourth, the doctrine of vocation "affirms that our lives have purpose even as we face death. Finally, "praying for a miracle shouldn't prevent us from faithfully preparing for death." While the chapter raises important theological questions that emerge from with the Christian faith, I don't believe the chapter prevents cross-religious discussions. In fact, I think such conversations might be beneficial.
One of the great debates of our age has to do with assisted death and death with dignity laws. A number of states have now legalized what some call "assisted suicide," but which Duff prefers to call "assisted death. Maybe you have had a conversation with a family member who has asked that you support their decision not only to forgo unnecessary treatments, but willingness to support their desire to end their lives with dignity. There are important questions be wrestled with including questions of divine sovereignty, the relational nature of the Christian faith in conversation with human autonomy, and what she calls the "sanctification of suffering." Some of these questions are rooted in earlier conversations about euthanasia, and the so-called slippery sloop running from assisted death, which is an autonomous decision, to euthanasia, which is imposed. There are all kinds of difficult issues, but if we don't talk about them then people may be left adrift.
From questions of assisted death, we move to questions of living wills and advance directives. Here is where conversation is really needed. There are a number of ways in which persons can provide guidance as to their end-of-life care, but unless all the paperwork is completed, and agreements have been made, one's wishes may or may not be honored. Some of this is rooted in the relationships of physician and patient. Is it paternalistic? Is it merely informative, where the doctor gives you the choices, but no guidance? Or will the relationship be interpretative? Choices are given, with guidance, so that people can make good choices. Duff prefers the third, and I would agree. This is a most helpful and practical chapter, that can guide families in their conversations. One of her suggestions, following ethicist Allen Verhey, is that these conversations could occur in churches. In fact, they might even take place in an interfaith forum, where people can share their traditions and beliefs, which she says can "encourage people to talk about their personal beliefs, fears, and hopes about death and dying" (p. 96-97). I think both suggestions are excellent, and I will look to engage them.
Finally, there is a chapter dealing some of the practical matters of funerals, burial, and grief. She goes through the process of funerals, what that involves, areas of concern. She talks about choice regarding the body from traditional burial to liquification. She notes that today cremation is the majority decision, but there are other options as well. Again, these are practical questions that need to be had so that family knows what a person desires, and family have their chance to think things through. I especially appreciated her discussion of grief patterns, both historically and contemporary. While Elizabeth Kubler-Ross has been influential in helping people understand the process of grief, Duff rightfully raises questions about these stages. Things aren't quite so straightforward as some have thought.
I believe that this a book that all pastors need to read, along with Being Mortal and The Good Funeral: Death, Grief, and the Community of Care by Tom Long and Thomas Lynch. All three books address important questions about end of life decisions. Being Mortal deals with broader questions of medicine, nursing homes, and quality of life issues, while The Good Funeral and Duff’s book have a narrower focus. Yet, they are all interrelated. Because the author or the publisher includes questions of reflection at the end of each chapter, I think that this could be a good study book for church groups as well. Questions abound concerning life and death, and we who are persons of faith and people who lead persons of faith, need to be equipped with good information. Nancy Duff has provided us with what a good place to start toward having these important informed conversations regarding the end of life.