If only I knew more mathematics.
— Albert Einstein's last words (Isaacson, Reference Isaacson2007)If I take a moment and truly contemplate about what brought me to work as a psychiatrist caring for patients with advanced cancer, I'd likely come to a realization that I believe is shared by many of my colleagues in psycho-oncology and palliative care. The exact circumstances, events, family legacies, and other influences may be relatively diverse and unique, but ultimately it is a desire, a drive, a need to answer the questions of “How does a human being live a finite mortal life?” “How is it possible to live, and retain the will to live, knowing that this is all finite, temporary? How does a human being live with the knowledge of death—in the face of death?” And, ultimately, “How can one live such a life without being overcome, panicked, paralyzed, or overwhelmed with the meaninglessness of life, by the fear of death?” I believe that many of us have come to the field of palliative care to find some of these very same answers.
Having grown up the child of Holocaust survivors, I was constantly exposed to and aware of the reality of death. Stories of death, loss, and suffering filled my home. I not only learned that death was real; I learned that it could happen to “us,” and that it could come at any moment—irrationally, violently, senselessly. When the telephone rang after midnight in my childhood home, it caused panic. The question was always “What tragedy has befallen us? Who died?” So it was not merely my passion for science and medicine, or my deep desire to understand the human psyche, or to use my intellect in the service of others—it was something more basic and existentially oriented. I needed to understand how a human being could continue to live with the knowledge of their death being very real and even proximate. I needed to place myself at that “nexus” between life and death, and dwell there and learn all I could from my fellow human beings (who we call patients) through conversation, observation, and ultimately research. The “who” that I was becoming in the world was someone who could have an impact on existential suffering, and particularly the fear of death. Like all acts of “care,” my mission was to aid others, but also to aid myself. I have been on a more than 30-year quest to find a way to not fear death. Have I succeeded? Have I learned anything that could be of use to me or others who face death?
I believe I have learned much but wanted to concentrate on one aspect of dealing with the fear of death, and that is the need to first deal with “existential guilt”—to explore existential guilt as a way to accept the life that one has lived, thus allowing one to face death with some sense of peace and equanimity. We human beings are human animals, with a biology that is hardwired to fulfill our primary existential obligation: survival in order to procreate. So in the face of danger and the threat of mortal harm or death, our nervous system goes off like an alarm and floods our bodies with catecholamines that force us to “flee or fight.” What is biologically produced in the face of the threat of death is a rush of adrenaline-induced intense fear. So as human animals we will always have this “fear” response. The question is whether we can blunt it with medications or overcome it with wisdom and attitudes we adopt with the aid of our very large forebrains–existential or even spiritual wisdom that allows us to face death with a sense of peace, a peace that can come from what Frankl (Reference Frankl1959) called the main task of dying, which is to relieve our existential guilt.
AWARENESS OF OUR EXISTENCE: A CAUSE OF FEAR OF DEATH AND EXISTENTIAL GUILT
Human beings are supposedly unique among living creatures in that we are “aware of our existence”—we can objectively contemplate ourselves! Almost 200 years ago, Kierkegaard (Reference Kierkegaard, Hong and Hong1983) postulated that as a result of this we experience two emotions: “awe” and “dread.” It is awesome to be alive. Yet it is dreadful to recognize that we will all die—and that death can come at any moment. Kierkegaard described the resulting experience of living this “aware” human life as a “struggle of being versus non-being.” Death, or the “inevitability of death” is a constant dread that lies just beneath the surface in all human beings. Death anxiety breaks through when our efforts to adapt to, minimize, or deny death fail us, particularly at moments of loss, the death of those close to us, or when we are confronted with the limitations of life, such as when we are diagnosed with a life-threatening illness like cancer. Death is the ultimate limitation.
Kierkegaard used the terms “angst” or “dread” when referring to what we call “death anxiety” or what social psychologists refer to as “existential terror” (Becker, Reference Becker1973). Angst is often thought to refer merely to fear or anxiety. Interestingly, “angst” comes from the German root angust, which is also means anger. This implies that anxiety and anger compose the duality of emotions related to death. Ernest Becker (Reference Becker1973) hypothesized that in order to mitigate against death anxiety, human beings create “culture”—humanly constructed beliefs about reality that reduce death anxiety. All “cultures” elucidate the origins of the universe, prescribe appropriate behaviors, values, and virtues, and offer literal or symbolic paths to immortality. Humans thus manage existential terror by believing that life is meaningful, and by drawing from the self-esteem obtained by meeting or exceeding cultural values. Thus, Becker and psychologists like Sheldon Solomon who study “terror management” (Maxfield et al., Reference Maxfield, Pyszczysnki, Solomon and Straker2012) highlight the importance of sustaining and enhancing a personal sense of meaning and purpose individually, and perhaps in the world as well, as critical to the mitigation of “death anxiety.”
This awareness of our existence as human beings also results in an existential and biological imperative to somehow “respond” to the fact of our existence. This “ability to respond” to existence is embodied in the existential principle of “responsibility.” We thus have a responsibility to create a life (related directly to Frankl's concept of “creative” sources of meaning—all the ways in which we derive meaning from creating a life, and becoming “who” we strive to be in the world). This responsibility to create a life involves creating a unique life (one only we could have lived—one authentic to us), and to live this life to its fullest potential, thus creating a life of meaning, purpose, direction, growth, and transformation, and becoming valued members of a culture and the world with meaning. Most, if not all of us, fail at this impossible task. Falling short of this responsibility leads to what existentialists describe as existential guilt, the notion that I could have done more, and that I missed opportunities or failed in some ways.
Kierkegaard's term “angst” also refers to guilt or remorse, and many existentialists think of the term “angst” as related to the concept of existential guilt—the idea that one has not achieved enough in one's life, not lived a unique life to its fullest potential. This sense of existential guilt, many existentialists hypothesize, is the root of death anxiety and anger at impending death. Hence, several existentially oriented interventions at the end of life focus on the concepts of completing life tasks, making amends, and forgiving and asking for forgiveness—trying to accept the life that one has lived (Breitbart, Reference Breitbart2017)
Freedom—the fact that we have the freedom to make our lives as we will it, to be the authors of our own lives—is another source of existential distress. The concept of “existential freedom” suggests an absence of external structure imposed upon the course and shape of our lives (perhaps with the exception of the genetic predispositions we have been born with, such as height, gender, intelligence, and certain diseases), and a frightening existential groundlessness resulting from the idea that we are primarily responsible for our lives. The concepts of responsibility, will, and existential guilt are all derived from this ultimate freedom. The need to respond to life or “responsibility” becomes central when one is aware of existential freedom. It is through exerting our will (and choosing our attitude) that we create the life that only we were meant to live, the person we want to become. Existential guilt arises when one is distracted from or impeded from exerting one's will and responsibility in living up to one's unique potential (never living up to one's potential).
THE CLINICAL RELEVANCE OF EXISTENTIAL GUILT
Once you becomes aware of the concept of “existential guilt,” you start to see it manifest clinically in patients who face the threat of death. At first, it seems a bit difficult to think about guilt in terms of “existential” guilt. We are all familiar with the concept of feeling guilt because of something we may have done that is perhaps wrong or shameful: cheating on a boyfriend, shoplifting those Armani ties (no I didn't), stealing that candy bar from the candy shop (when I was 6). As psychiatrists, we learn of guilt as a Freudian concept. We also laugh at stereotypical jokes referring to Jewish or Catholic guilt. Existential guilt is quite different (despite the potential overlap with some elements of neurotic guilt). Existential guilt refers specifically to the concept that each of us has the (challenging, if not impossible) task of creating a life, a life that is unique to ourselves—a life that only we could have lived. And we need to and aspire to live this unique life to its fullest potential. We imagine our lives as an arc, a trajectory. Playwrights refer to the “arc” of the character. We each imagine this arc of the trajectory of our lives in which various milestones, ambitions, goals, and dreams are achieved: growing up, getting an education, falling in love, creating a family, finding one's passion, purpose, and work in life, growing as a person in all of these areas, perhaps seeing children grow up and have children of their own, living to a ripe old age having lived a life full of “meaning moments,” and having the ability to look back at a life lived and feel “I did good enough.” “I can accept the life that I lived.” But this is hardly ever fully achieved by most of us. We are fragile, vulnerable, imperfect human beings. Life is perilous. Internal and external events batter us or buoy us, and that trajectory we imagine should have been is often not the trajectory that unfolds. Even the greatest among us can feel the sense of “if only I could have done more.” As an example of existential guilt, I often quote Albert Einstein's last word's: “If only I had known more mathematics.” Apparently, the theory of relativity and reconceptualizing the very nature of the universe weren't big enough achievements. Some of you are familiar with the story of Oskar Schindler or the film Schindler's List (Keneally, Reference Keneally1982; Spielberg, Reference Spielberg1993). He had saved the lives of hundreds of Jews from the death camps of the Holocaust by having them work in his factory. As the war is ending and the Russians are coming, the Jewish workers are trying to help Schindler escape capture by the Russians, so they dress him up in a labor camp worker's garb. Schindler breaks down and, despite having saved so many lives, laments, “If only I could have saved a few more.”
To create “drama” a playwright will place an obstacle in the character's arc or trajectory. Boy meets girl. Boy falls in love with girl. Boy loses girl. Drama ensues until the boy and girl find their way back to each other. Cancer or some other life-threatening disease interrupts the human trajectory in the most dramatic of fashion, creating existential guilt. Reconnecting the two arcs involves “transcendence” or connection that can be achieved primarily through forgiveness and relief of existential guilt. Returning home.
In the clinical setting, existential guilt is manifest when the arc of the trajectory of a patient's life has been knocked off course by an obstacle, a limitation, cancer, the loss of roles, the proximity of death. The larger the delta between the idealized trajectory and the one that has unfolded is proportionate to the existential guilt experienced. Imagine a 40-year-old man with 2 children aged 3 and 5 and a marriage of 8 years who has just begun to enter the most productive period of his work life and is now diagnosed with widely metastatic pancreatic cancer. He will experience profound existential grief: “I haven't fulfilled my responsibility to raise my children and see them launched; I haven't fulfilled my career goals, my ambitions for creating a life with my wife; I haven't assured that my wife and children will be emotionally or financially secure”—the list of unlived hopes and dreams, unfulfilled obligations, and responsibilities to oneself and those you love. The existential guilt in such a patient would likely also be much more intense than for a 92-year-old man who has lived a full life, who achieved all of the milestones that the younger man had anticipated.
Clinically, I see existential guilt manifest as either depression, shame, anger, or intense death anxiety. In a young man like the one I described above, a typical manifestation of existential guilt is anger. In fact, I teach my trainees that whenever they encounter an angry patient with advanced cancer, think existential guilt and address its sources. That's the source of their despair. Anger and anxiety have the same etymological roots. In fact, anger typically arises from fear: the fear of loss—loss of love, hope, life. Finally, existential guilt can be manifest as depression or shame when the anger and guilt are directed inward.
It is often possible to relieve existential guilt through a variety of approaches: completing those life tasks that can be completed, making amends, asking for forgiveness, planning to assure some sense of security for a family, remembering that they chose a spouse who is capable of successfully completing the job of raising their children, giving a spouse permission to choose to remarry or find happiness again, leaving letters of advice for children to be opened at expected milestones that will be missed. All of these strategies can be helpful. Ultimately, it comes down to the singular choice of forgiving yourself for being an imperfect, vulnerable human being. Forgiving yourself for merely being human—all too human.