In the conversation surrounding end-of-life, we need doctors who listen to who we are so that they can help us make decisions that fit our lives and world views. But we also need better patients. We need to be better patients.
We need to be patients who have thought about our inevitable death. One big problem is that we don’t know about death anymore. Where do we see death? Very few people these days have actually seen someone die.
But death is everywhere in, say, video games. Death has become so absolutely ingrained in game culture that you might have just learned to look past it. An average player will die over and over again in Modern Warfare 2. This has created an exceptionally warped creative culture that tells us we're being killed in alarmingly realistic ways, and then instantly revives us at the last checkpoint.
The most common use of death in modern games is as a reset function. You're punished with horrible contortions of violence and then magically reset to try again. Death is treated like a flubbed line during movie production. The director calls cut, the actors are sent back to their opening marks, the extras are reset and, if you're lucky, there'll be a quick note about how to do better next time. Hit the X button to duck. When you see the grenade indicator pop up, you should probably run somewhere else.
And we learn from Kenny! He dies on every episode of South Park. Almost. The running gag of Kenny's deaths in earlier seasons was incorporated into the season 9 episode "Best Friends Forever" when Kenny, in a vegetative state, is kept alive by a feeding tube while a media circus erupted over whether the tube should be removed and allow Kenny to die. The episode received much attention as it served to provide commentary on the Terri Schiavo case, originally airing just one day before Schiavo died. The episode earned South Park its first Emmy Award for Outstanding Animated Program.
We learn about death when celebrities like Michael Jackson or Whitney Houston die. There is often an intense international outpouring of grief, and the production of commemorative CDs, but these deaths quickly fade and we return to forgetfulness about this enormous reality.
But when we, or our loved ones, become ill, we are no longer interested in the theoretical issue of suffering and evil; rather, we are torn apart by what is happening to real people, to those we know and love.
It may be true that we no longer trust in God to heal our loved ones, but the interesting question is why we put so much trust in medicine. This seems particularly puzzling when we realize that most people know even less about medicine than they once did about God. All that is required to make our world right is the increasing development of our intelligence and knowledge. In the name of that development we are now ready to offer up our loved ones to the priests of this new hope, believing as we do that finally a “cure” will be found.
It is not a question of winners and losers but rather a question of why we place such desperate faith in medicine. Behind this question, of course, lies the even more challenging questions of why we are so disturbed by the death of our loved ones and would willingly subject them to prolonged agony rather than face their deaths.
The ideology that is institutionalized in medicine requires that we interpret all illness as pointless, as playing no role in helping us live our lives well. Illness is an absurdity in a history formed by the commitment to overcome all evils that potentially we can control. It is only against this background that we can appreciate the widespread assumption that what we can do through the office of science and medicine we ought to do. Whereas it used to be a physician’s first obligation not to act, we now believe our commitment to the abolition of limits makes the physician’s first obligation to act through the office of medicine. As a result, physicians lost their freedom to care for the sick because they are now judged by the predictability of their performance. Physicians must now provide a ‘cure’ based on the assumption that what is ‘wrong’ with the sick can be traced to specific ‘causes’. The patient becomes the consumer, and thus the old conception of medicine as a collaborative enterprise, in which doctor and patient each have freedoms and responsibilities, can no longer be sustained.
Medicine reflects who we are, what we want and what we fear. Now the task of medicine is to go to elaborate lengths to keep us alive, the consequence being that some of us end up being mere physical shells incapable, when we are dying, of knowing we are dying. Because cure, not care, has become medicine’s primary purpose, physicians have become warriors engaged in combat with the ultimate adversary – death. Of course, since this is a war that cannot be won, it puts physicians in a peculiar double bind. They must do everything can to keep us alive, as if living were an end in itself, but then they must endure blame when, inevitably, they fail. Our attitude toward death and our corresponding conception of medicine has created a real problem: Given our boundless expectations of medicine, how can we ever set limits on medical care?
The goal of medicine cannot be ‘well being’ in the way the goal of painting is a good painting. To seek a patient’s well being is to presuppose some framework of meaning already in place. The clinician who seeks the patient’s well-being is necessarily constrained by the narrative unity into which he or she has entered. When physicians fail to perceive such unity in their patients lives (assuming it is present), then clinical medicine, however well-founded its scientific judgments may be, can enhance patient well-being only by accident. The situation is graver when patients themselves forget who they are, for medicine becomes important to bring about or enhance patient well-being, even by accident, if there is no story to ground questions about ‘better or worse’ treatments.
For a person with no unity in their life – a causality of modernity – there can be no sound clinical medicine, though scientific medicine may be able to make correct judgments about the proper treatment of any disease she develops. But this latter type of judgment is directed to the disease simply as an instance of a kind, not to the disease as present in this person. But it is too much to ask medicine to aid us in plotting our lives. The aim of medicine cannot be the well-being of the patient when such well-being presupposes a coherent story about life and the world that neither the patient nor the physician may have. Ironically, medical treatment, since it must be restricted to the mechanical, may undermine a patient’s ability to maintain a unified sense of life precisely because it drives him to distraction by procedures that only prolong his dying.
We are not interested in false or easy answers, and we are not interested in false or easy comfort. So do not say that death is ‘not really so bad'. Because it is. Death is awful, demonic. If you think your task as comforter is to tell me that really, all things considered, it’s not so bad, you do not sit with me in my grief but place yourself off in the distance away from me. Over there, you are of no help. What I need to hear from you is that you recognize how painful it is. I need to hear from you that you are with me in my desperation. To comfort me, you have to come close.
The reality of modern medicine is that relatively few of us will be fully conscious, lucid and full of parting wisdom up to the very moment of our deaths.
Preparing for a good death forces us to live a good life. The less you can do about the length of your life, the more attention you should pay to the breadth and depth. Paying attention to this is how we can rethink the way we form doctors, and the way we form patients.
Ray Barfield joined the faculties of Duke’s Medical School and Divinity School in 2008. He is married to Karen Barfield, who is an Episcopal priest. Ray and Karen have two children, Micah and Alexandra.
Dr. Barfield came from St. Jude Children’s Research Hospital, where his research and practice focused on improving immune therapies for childhood cancer (including bone marrow transplantation and antibody therapy), and understanding the moral aspects of decision-making in medical research involving children. At Duke he has turned much of his effort towards bridging activities in theology and medicine. On the medical side of campus he continues to practice as a pediatric oncologist, and he directs the Pediatric Quality of Life/Palliative Care program, a program that combines medical care, education, and research to benefit children with complex, chronic, or potentially life-limiting disease. In the Divinity School he develops courses and programs that address topics at the intersection of theology, medicine, and culture. He also teaches courses in Christian philosophy.
While he continues to publish research papers in oncology and palliative care, much of his current writing focuses on the impact of literature on philosophical thought, and the ways that literature and narrative open up philosophically engaging dimensions of human experience, not least the experiences of illness and suffering. He has over ninety publications in medicine, philosophy, and poetry. His books include The Ancient Quarrel Between Poetry and Philosophy (Cambridge University Press), a book-length collection of poetry called Life in the Blind Spot, and a novel called The Book of Colors.