42 Talking about talking about death
Being Mortal: Medicine and What Matters in the End, Atul Gawande.
The Art of Dying: Living Fully into the Life to Come. Rob Moll.
Departing in Peace: Biblical Decisionmaking at the End of Life. Bill Davis.
Between Life and Death: A Gospel-Centered Guide to End-of-Life Medical Care. Kathryn Butler.
I’ve Seen the End of You: A Neurosurgeon’s Look at Faith, Doubt, and the Things We Think We Know. W. Lee Warren.
Whatever the medical decisions made, under any circumstances we can express our faith in God, our love for one another, our hope in the resurrection. Having does this, we will have been faithful, in the eyes of fellow believers throughout history, to God and our neighbor. In the culmination of our lives, we will have said and done what was most important.
Art of Dying, Moll, 22
I spend a lot of time thinking about death. Not because I’m particularly morbid. More because, as a hospital chaplain I’m standing with a family at or after the death of a loved one. I stand with families when people come in after falls and motor vehicles accidents, during strokes and heart attacks,. I am often in a room when a doctor says, “Has your mom ever indicated how far we should go if her heart stops.” I’ve held hands with old men, kept grandmothers from falling to the ground, stood by as grandchildren punched the wall, once.
So have you. Or so will you.
And yet, as prevalent as death is, happening in all but three people that I know of across time, the culture around me is uncomfortable with the topic, shying away from the preparatory conversations which would make the hospital conversations less confusing, less frustrating.
The book that has been clarifying to many people in the last few years has been Being Mortal: Medicine and What Matters in the End, by Atul Gawande. With honesty about his thinking as a doctor and a son, Gawande helped many of us begin conversations about moving away from a medical framework for death to a human and humane framework.
As helpful as his framework is, however, it reflects his worldview as a physician and is shaped a little by his Hindu roots. For people who are looking for a framework grounded in a Chrisian worldview, there feels like a need for something more.
By something more, however, I’m not talking about the late twentieth-century evangelism question, “If you were to die tonight, do you know where you would end up?” That question has dominated many bedside conversations and has not allowed for conversations with questions like, “If you were dying today, how would you want to be treated?”
During the last month I’ve been reading four books about death. Because I see a lot of death as a hospital chaplain, it makes sense for me to look for ways to help people think about how to make decisions about medical and other interventions near the end of life. How to understand what is going on in the hospital and in the body. How to work within a framework to make decisions.
The authors start from different roles in the process of dying: a journalist, a neurosurgeon, a trauma surgeon, a philosopher. One is providing a course in thinking through decisions. One is providing a handbook of key medical treatments. One is opening head and heart in a story to see the process of interaction with God across time. One is writing the book that invites thoughtful reflection on what dying means.
In addition to their various occupational perspectives, all four authors write from Christian worldviews. Two are non-denominational evangelical, one is Presbyterian, one is Lutheran. All four talk about making decisions around death from a framework informed by the Bible.
In what follows, I’m sharing extensive notes from three of these books and a brief discussion of the fourth. Some summary, some commentary, some suggestion about the value of each for particular audiences.
The Art of Dying: Living Fully into the Life to Come. Rob Moll. Downers Grove, IL: IVP Books. 2010.
Rob was a journalist who spent time working as a hospice volunteer and as an intern at a funeral home. At the core of his book is what he calls the Christian art of dying. If our theology says that death is part of life and is not the end of living, how might that inform how we approach the idea of death? This is the best written exploration of how to have conversations about death with those we love, about how to approach a Christian funeral, about how to think through grief and resurrection.
He starts with talking about his pursuit of the subject which started following the Terry Schiavo story.
I was unsatisfied with Christian responses that either required the prolonging of life — no matter the physical, mental, relational or financial suffering involved—or that pinpointed what treatments might be appropriate under what circumstances. Instead, I wanted to find a Christian response to these issues that would be useful under any medical circumstance, that upheld the value of life and the dignity of the person. What I discovered was the Christian tradition of the good death. (20)
If we Christians really do enjoy the life of God, who is victorious over death, our life on earth is therefore cast in a very different light. Century after century Christians rehearsed and applied their beliefs about death; throughout their lives they envisioned dying so that at the moment of death they would be prepared. They sought to be reconciled to God and their human brothers and sisters.
Death, Christians believed, was not just a medical battle to be fought, though they did use medicine for healing. Nor was death simply about the loss of precious relationships to be mourned. Instead, this was a spiritual event that required preparation. (22)
In Chapter 2, he talks about gradual dying. In many situations, we know that we are in the process of dying for months or years ahead of the event. And yet, many of us pursue aggressive treatments that cloud our thinking and conversations all the way to the end. Moll writes, “A death that doesn’t afford the opportunity for last words, for reconciliation, for repentance, and for spiritual preparation for the next world is not a good death, according to traditional Christian teaching.” (38)
In chapter 3-4, he reviews the idea of a good death in the history of Christianity, describes the disappearance of it as medical models come into being, and suggests that it could be recovered.
In chapter 5, “the Spirituality of Dying,” Moll talks about the things that happen as people are nearing death, seeing what others can’t see, conversations with people who aren’t around. He suggests that the medical model of care has left the spiritual part of dying on the sidelines, and that it is valuable to consider.
Having laid a framework, the remaining chapters walk us through the situations that happen. Chapter 6 points to advance directives. Chapter 7 describes caring for the dying. Chapter 8 talks about funerals from a Christian perspective. Chapter 9 is about grief and mourning.
Chapter 10 is about culture change, about creating a faith community that helps build a culture of resurrection. If we are accepting of conversations about dying, our approach to living changes. And our willingness to include all generations in the life of the congregation can teach us all how to be faithful all the way through life. Moll writes, “We prepare for death and we see the Christian life in practice by providing a means for the dying to continue their presence in the church.” (169).
What makes this book particularly poignant is Moll’s death at age 41 in a 2019 climbing accident. His obituary reads, in part, “After graduating from Cedarville University in 2001, Rob dedicated the next 18 years of his professional career to advancing the Church’s mission to walk in the way of Christ.”
So when he talks about having conversations with his wife about marrying after he dies, about what kind of life-support is appropriate, you realize that the conversations he had as a man in his thirties were the conversations we all should have.
This is a remarkable approachable, well-written book. If you have to choose one, choose this one.
Departing in Peace: Biblical Decisionmaking at the End of Life. Bill Davis. Phillipsburg, NJ: P and R Publishing, 2017
“…I insist on the value of prayer even as I argue that it is inappropriate to use medical means to ‘give God time to work a miracle.’ God does not need that kind of help.”
Davis is a philosophy professor and an elder at his church. His book teaches and shepherds us rigorously and compassionately. In the early part of the book, he turns to the PCA Report on Heroic Measures, rooting his work in denominational reflections. He chooses to use the word person rather than patient, and to use names rather than the word person. He outlines his assumptions carefully. And then he walks through cases to weigh the process of making decisions.
Davis unpacks his work in 8 chapters.
In chapter 1, he lays out the introduction, defining terms and assumptions. He offers his core motivation: “This book is driven by the most common source of anxiety expressed by Christians as they have faced end-of-life decisions. Desiring to honor God’s Word and obey his commandments, they have often thought they were obligated to do everything medically possible to expend earthly life as long as possible.” (6)
In chapter 2, he starts building his Biblical case. His assumption is that we are to be faithful servants. So rather than focusing on labeling choices as right or wrong, he suggests that there is a better way to think through our choices: faithful or unfaithful. So, when it comes to pursuing medical interventions, does this or that intervention reflect being a faithful servant. This includes stewardship and bearing the image of God.
He writes, “I will argue that in some situations, Gladys can faithfully discontinue the burdensome treatment even if it means that death will overtake her sooner. It is never faithful for Gladys to use medical or other means to hasten her death, and it is always part of faithful service for Gladys to pray that when be restored to health. But she can faithfully decline ineffective or excessively burdensome medical treatment.” (xiv)
As he summarizes later, “We are not obligated to suffer only to stay alive (46)”
In chapter 3, he lays out biblical principles by looking at four specific conditions which invite conversations about appropriate levels of care and then describing four kinds of treatment options. The conditions are permanent unconsciousness, permanent confusion, terminal illness, and dependence for daily living. The four treatment options are CPR, ventilator, dialysis, or other mechanical maintenance, treatment for new conditions (for someone already chronically ill), and tube-feeding (artificial nutrition and hydration). Each description is clear enough that readers are able to understand the categories and the issues. And then he unpacks how we might sort through making decisions. For example, in the tube-feeding section, he identifies three principles to guide decisions: the duty to care for ourselves; the duty to show love by feeding, and no duty for force-feeding. By describing biblical expectations (duty), he gives the person in the situation a framework for arriving at decisions about care.
In chapter 4, he offers six case studies to show the reasoning process. In each case, he starts by telling a story of someone who has come to him for advice. Each story arrives at a point where there are options: what counsel will you give? Davis offers answers to give to the person facing the choices. He then provides commentary on those answers, and then poses another question with options. He then provides commentary on those answers, and finally, in an epilogue, tells what happened. It’s a remarkably well-designed way to allow the reader to practice thinking about issues like dialysis, praying for a miracle, and four other difficult and real cases.
In the remaining chapters, Davis describes his own advance directives, talks about the financial issues of decision-making, considers the reality of hospitals (in contrast to the dramas we watch), and then suggests what to do now, before we are in crisis situations. A summary list of the principles is included as an appendix.
It is worth noting that the discussion of the role of finances in decision-making for medical care is hard and helpful. Davis uses brief individual cases to illustrate principles like the “prohibition against unpayable debts” (199) and “the duty to steward our resources” (26, 210).
This book is like taking a course in biblical decision-making in the particular context of end of life. With principles, illustrations, extended case studies, the reader is able to develop a framework. It’s not the book to read, necessarily, the hour before a decision. Though it could be helpful. It is the book to read to build a framework for decisions. As I often say when I’m teaching a Bible study, “I don’t expect everyone to read the big commentaries, but I expect them to expect me to read them.” This is a book that those of us who provide counsel should study.
Between Life and Death: A Gospel-Centered Guide to End-of-Life Medical Care. Kathryn Butler, M.D. Wheaton, IL: Crossway, 2019.
Kathryn Butler spent 10 years as a trauma surgeon working in the ICU. She is the person who responds when the ambulance brings someone whose car rolled over, whose motorcycle went off the road, who fell off the roof, who was crushed by a pile of lumber. And she is the person who talks with the family to discuss the likely outcomes.
Between life and death reflects her hope that “Through this book, Christian believers grappling with decision about life-prolonging measures can confront their situation with peace and discernment.” (Loc 198).
This medical experience and training is evident in her explanations of treatments and technologies. What does it mean to be intubated? What does CPR mean? What are the implications of a DNR (Do Not Resuscitate) order?
Butler suggests that a “Christ-centered, God-honoring approach to end of life care begins with faithfulness to God and his Word.” (Loc 280) The framework rests on four key principles: Sanctity of mortal life, God’s authority over life and death, mercy and compassion, and hope in Christ.
Sanctity of mortal life: Butler points out that “Research suggests that those with high ‘religious coping’—i.e. those who depend upon faith to guide their decisions—seek more aggressive care at the end of life, even in the setting of terminal cancer.” Those people, because they believe that stopping treatment is the same as killing someone, are likely to continue treatment even when it is causing pain. At that end of that section, she says, “as we endeavor to preserve life that God himself crafted, we must acknowledge when our efforts prolong not life, but rather a painful death.”
“Sanctity of life doesn’t not refute the certainty of death.” And death is not punishment for specific sins. “Yet, when we so blind ourselves to our mortality, we deny the resurrection.”
God’s authority over life and death: She uses the example of Christ in the Garden of Gethsemane accepting that death will happen. She suggests that “miracles that would fulfill our most desperate longing may not align with his divine and living will.”
“While we should pursue medical therapies with promise of cure, we err when we fight in the face of futility, stalwart in our believe that God can use technology to perform a miracle. . . . The Lord does not need a ventilator to save a life. . . .To cling to interventions in the face of futility is to chase after idols. We worship the technology rather than its Creator.”
Mercy and compassion. Mercy doesn’t justify active suicide.
“It does guide us away from aggressive, painful interventions if such measures are futile or if the torment they inflict exceeds the anticipated benefit.”
“We are not obligated to pursue treatments that threaten our ability to serve God faithfully. . . .God’s word does not require us to endure suffering to extend life if we cannot direct that extra time toward faithful service to him.”
“We need not pursue life-prolonging treatments if they strip us of our capacity to live for the Lord.”
Hope in Christ: We need not fear death. And in this section she offers extensive scripture about death and resurrection.
In sum, this question: “Will life support in this scenario constitute preservation of life or prolonging of death and undue suffering?” Life-sustaining measures are supportive, not curative. They buy time. “But if the core illness is irreversable, life support prolongs our dying without benefit.”
The biblical principles of loving our neighbor and ministering to the suffering then force us to consider what life-sustaining technology does. Compressions, vents, being bed-bound when there is hope for recovery, is defensible. If there is no hope of recovery, if there is no cure, then we can and need to consider not doing death-prolonging treatment.
Butler offers a core set of questions:
“What is the condition that threatens my loved one’s life.
- Why is the condition life-threatening.
- What is the likelihood for recovery?
- How do my loved one’s previous medical conditions influence the likelihood of recovery?
- Can the available treatments bring about cure?
- Will the available treatments worsen suffering with little chance of benefit?
- What are the best and worst expected outcomes?”
These questions, with the answers from the four principles, can bring clarity. And prayer, counsel, and reflection.
The second part of the book is a detailed look at organ-supporting measures. In each chapter, she defines the treatment and illustrates its use and decisions with stories. Her descriptions of the treatments bring the clarity that a medical person can give.
- Intensive care
- Mechanical ventilation
- Cardiovascular support
- Artificially administered nutrition
- Brain injury.
The last section of the book is “Discernment at life’s end.”
- Comfort measures and hospice
- Physician assisted suicide
- Advance care planning
- Being a voice – surrogate decision making / healthcare representative.
Being a voice is a significant responsibility. According to Butler’s citation of research, in people over 60, 70% lack capacity to make decisions at the end of life, 70% of people want to die at home. 20% do. 25% over 65 spend their final days in ICU.
She offers a helpful list of questions for discernment, including, “What matters most to my loved one?” And “if he could speak for himself, what would he say about the current situation?” The goal is to reflect what they would want, not what we want for them OR what we can handle or what our loss will be in response to their decision.
And making sure that we reflect on the spiritual life as part of our life (as much as moving and breathing), she suggests considering how their way of living going forward can include communion, fellowship, contemplation, and even prayer.
The appendices are worth mentioning. Appendix one gives a summary chart of organ-supporting care. This is a helpful summary of the center part of her book. And found in appendix two, her sample advance directive is an outstanding example of expressing wishes rooted in her understanding of her goals for life and death.
Where Butler isn’t as strong is in the examples of people. There, the vocabulary is more flowery than I like. Still, as a book that teaches you the decision points, this book is incredibly helpful.
I’ve Seen the End of You: A Neurosurgeon’s Look at Faith, Doubt, and the Things We Think We Know. W. Lee Warren. Colorado Springs: Waterbrook Press, 2020.
I read an early draft of this book about the time I was starting to work as a hospital chaplain. I didn’t know the varieties of brain tumors or the implications of working on them for the doctors. I did know a little about Lee’s experience. We had talked some and emailed some.
This is the book when difficult medical situations push you toward asking, “Why?” The descriptions of technologies and treatments are helpful, but are not the focus of the book. The focus is on Lee’s journey, and ours. When we know that treatment will not be ultimately helpful, whether in the case of glioblastoma or in the case of life, his journey is helpful.
I’ll be writing more about this book when we are closer to the publication date.