Fully Alive At Life’s End: Taking Our Humanity Seriously
Faithful Journeys: Living Fully In the Final Chapters of Life
A One-Day Conference Examining Catholic Perspectives On Accompaniment At the End of Life
The Gerber Institute for Catholic Studies
November 2, 2018 – Newman University, Wichita, KS
Greeting and Thanks
Thank you very much for the invitation to speak at this conference. To be honest, when Dr. Papsdorf emailed and asked if I would be willing to speak today, I was incredibly honored and humbled. But as I read the list of speakers for this conference, I was also incredibly intimidated and nervous. I mean, after all, most of these speakers have been professionals in their field longer than I have been alive. So thank you again for the opportunity to be with you all here today.
What continues to fascinate me in the conversation about care and accompaniment at the end of life is our humanity. Really, in every area of life, in every area of study I undertake, this is what continues to fascinate me: our humanity, our human nature, this human condition. Why? Well, “Just think! God became a man like us…That God became a man like us is something out of this world!” (+Manfredini). And yet, it is our humanity that we can tend to misunderstand the most.
And so, when I began to research and think and write about this element of our humanity, our humanity at the end of its earthly journey, I began to become more and more fed-up with the way in which it was being approached. So much ink was being shed on why Physician Assisted Suicide is wrong, or the focus was centered on the moral object, or dignity, or autonomy, or suffering. And don’t get me wrong, these are all important! But I continued to notice that the real core of the issue was being ignored: our humanity. Everyone was taking sides, everyone was fighting about the morality of this or that, but there was a fundamental misunderstanding: our humanity. And so, first and foremost, above all else, I knew that the core had to be addressed, the true challenge had to come to light. “We have to become even more aware of the nature of the challenge [of our humanity]. Otherwise, we will try to plug the leaks, the circumstances, which will be useful for some time, but this will not be what truly changes things” (Carrón, Disarming Beauty, 47). You cannot truly accompany someone if all you are doing is attending to circumstances and “plugging the leaks.” That’s not accompaniment, that’s comfort care.
And so I went in search of the core. Once we get past the leaks and circumstance, what is at the core? And in finding the core, in addressing the riddle that lies at the center, I knew that we could begin to understand the path forward; I knew that the buzzword “accompaniment” would begin to take a concrete form.
The Core: Fear and Anxiety in the Face of the Ultimate Questions
So what lies at the core? Well, “Put bluntly, it is the fear and anxiety a person faces when confronted with the ultimate questions: questions that lie at the core of our being, that ‘constitute the stuff of which we are made,’ questions like, “Who am I? Where did I come from? Why am I here? Why is there suffering? What comes after death?” (Brungardt, “A Study of Accompaniment at the End of Life,” 650). And the fear and anxiety from these questions are not specific to the dying process, but in the face of death, in our confrontation with the looming reality of death, they are made all the more real to each individual person.
As the priest and theologian Luigi Giussani said, death “is the origin and the stimulus for all searching…because death is the most powerful and bold contradiction in the face of the unfathomability of the human question,” of the question of our humanity (Giussani, The Religious Sense, 46). And the issue isn’t the questions that come up, but our inability to provide the answers ourselves! We cannot be the answer, we cannot satisfy. In our Western, American culture, we’ve been taught that we have to take care of ourselves, provide for ourselves, take the bull by the horns and forge our own destiny. But death…death puts a stop to all of this. Death presents us with what we want to deny the most: our own limitation. We can no longer take care of ourselves; others have to do it. And this can lead people to feeling like a burden on others; which they try to avoid by isolating themselves.
Another element is pointed out by Ernest Becker who wrote a Pulitzer Prize winning book back in seventies called The Denial of Death. And in it he said, ‘The irony of man’s condition is that the deepest need is to be free of the anxiety of death and annihilation; but it is life itself which awakens it, and so we must shrink from being fully alive” (Becker, The Denial of Death, 66). That is incredibly insightful! We all want to live life to the full, but the more we do, the more we engage our humanity, the more we are forced to confront our humanity, our limitedness, our poverty, our dependence. And so—and you see this all the time—we settle for less, we “shrink from being fully alive.”
Joseph Ratzinger, the future Pope Benedict XVI, pointed this out too. He said, death has been reduced to the level of “technological activity” and, consequently, so too has human life. For “where it becomes too dangerous to accept death in a human way, being human has itself become too dangerous” (Ratzinger, Eschatology, 72).
But when we shrink from these questions in fear and isolate ourselves, there remains the reality that this fear coupled with that solitude can turn self-destructive. In other words, our inability to cope with the thought of losing our autonomy or dignity, coupled with the reality of suffering or feeling like a burden to others, becomes the driving factor of our choices” (Brungardt, 652).
The Circumstances That Don’t Ultimately Matter: Appeal to Dignity and Autonomy
When you look at the data—for example, the annual data summaries from the Oregon Health Authority on the state’s Death with Dignity Act—what you see, time and time again, is people citing two main reasons for requesting Physician Assisted Suicide: loss of dignity and loss of autonomy. And these are not exclusive to people who request Physician Assisted Suicide. I step through each of these claims in my article and don’t want to spend my time going through those here. The point I make is that even though one’s perceived loss of dignity and the loss of autonomy are incredibly important existential concerns that cannot be taken lightly–I mean, you can’t blame someone for how they feel–even though these are important, we can easily get overly caught-up in them.
Real quick: take autonomy. People are trying to assert their right to choose, their right to decide when and how they die; they are going to be in control of their own destiny to the end. But what is really going on? Again, as Ratzinger points out, the person is trying “to avoid death as something which happens to me” (Ratzinger, Eschatology, 71). Put another way, those who make the argument for Physician Assisted Suicide from autonomy are not really arguing that they should be able to die as they see fit, but rather that they should be able “to avoid dying,” to avoid this experience altogether.
The Circumstances That Do Matter: Agent-Narrative Suffering and Loss of Dignity
Now, “If neither dignity nor autonomy is really at [at the core], what is? …suffering, though of a particular kind. In many debates, suffering is often equated with physical pain. [But] as [Daniel] Sulmasy notes, pain is ‘fundamentally a biological phenomenon,’ while suffering is ‘an experience that makes explicit a person’s actual finitude’” (Brungardt, 654). Suffering is not just pain; pain management is not suffering management.
One of the most insightful distinctions that I have come across is the one made by Lynn Jansen and Daniel Sulmasy. They distinguish between two types of suffering: neurocognitive and agent-narrative.
“Neurocognitive suffering ‘has a direct causal relationship to the patient’s underlying disturbance in physiological, neurochemical, or mechanical function…’ [This] is something ‘diagnosable’” (Brungardt, 654-655). For example, a dying person can be depressed because of chemical imbalance in the brain, and thus be diagnosed with depression. The depression resulting from the chemical imbalance is an example of neurocognitive suffering that can be treated with medication.
“Agent-narrative suffering, on the other hand, ‘results from damage to the agency and narrative interests of patients.’ This suffering ‘is belief-dependent, [and has], at most, an indirect relationship to the patient’s underlying medical condition.’ The depression of a patient who has received a grave diagnosis may be due not to a chemical imbalance but to his damaged sense of agency and his sense of loss about how he thought his life would play out” (Brungardt, 655).
Now, dignity does play in to all of this, but it has nothing to do with our intrinsic dignity. It has to do with the experience, with the fact that the person feels they have lost this dignity. Sometimes that is on us! In a system in which death has become a “purely technological [problem] to be handled by the appropriate institutions,” it is easy to feel you have lost your dignity if people treat you like a technological or biological issue they are trying to “solve” or “fix” (c.f., Ratzinger, Eschatology, 70).
Of course they suffering! We hook them up to machines; we come in and poke and prod them at all hours of the day and night; we walk into a room with our agenda of what we need to get done regardless of what they feel. We are trying to be efficient, but interpersonal work is anything but efficient.
“What matters, then, is the feeling [and perception] of dying [persons] that their dignity has been lost. [This is where the agent-narrative suffering enters in.] Although they are, objectively, still in complete possession of their intrinsic dignity…their subjective feeling of loss leaves them increasingly vulnerable. ‘…they feel they have lost all meaning, dignity and purpose in life.’…By reaching out to that person and constantly affirming their intrinsic dignity, value, and worth, we better equip them, even in this vulnerable state, to endure the challenges with which they are faced” (Brungardt, 656).
What Does “Accompaniment” Look Like?
So who is the person we we encounter at the end of life? We encounter a person confronting the ultimate questions of life which can no longer be avoided. We encounter a person finally being forced to confront what is at the core of their being, perhaps for the first time. We encounter a person who is perhaps undergoing intense suffering (agent-narrative, not just neurocognitive) which stems from the fear and anxiety of facing these questions.
And so, for doctors, this calls for more than “pain control” and “comfort care.” And it means engaging in some of the most inefficient work that exists: interpersonal. Again, what is often underlying all of this is a non-biological problem, and doctors have a tendency to be trained to see a human as a purely technological creature they can fix! But agent-narrative suffering cannot be treated with any medicine you have. What can help is a presence, a person who cares.
A quick story: I was called to the hospital to visit a young hispanic woman in a coma and her family. Doctors were trying everything, but she wasn’t responding. They were telling the parents, “She could get better, she could get worse. We just don’t know.” Now, I don’t speak Spanish well; I understand just fine, but it is still hard to speak. I spent almost an hour just sitting and listening to this mother. She was asking the big questions of why this could happen to her daughter, and so on and so forth. And I initially felt terrible because I didn’t have the ability to explain to her the meaning of Christian suffering, and why evil exists, and so on and so forth. But, in the end, what she needed was someone with her in the suffering, not someone to fix it. Deep down, everyone knows we are mortal, even if they don’t like it. They just don’t want to be alone with that. I couldn’t fix anything, but I could be present. And that ended up making all the difference.
For family, this means one simple thing: giving yourself. Giving your time and energy and love…everything to this person. Personally, I would rather be writhing in physical pain knowing that my family had not abandoned be and that I had a chance to reconcile with those I needed to reconcile, than if I had doctors controlling my pain but not one there with me and I felt there were a lot of things left “unfinished.” I would want someone to just be there with me in my fear, not someone who could take it away, but leave me alone.
To close, I want us to recall that insight from Ernest Becker: “The irony of man’s condition is that the deepest need is to be free of the anxiety of death and annihilation; but it is life itself which awakens it, and so we must shrink from being fully alive.” (Becker, The Denial of Death, 66). Again, we all want to live life to the full, but the more we do, the more we engage our humanity, the more we are forced to confront our humanity, our limitedness, our poverty, our dependence. And so we “shrink from being fully alive.”
This is precisely where Jesus Christ must enter the equation. Jesus himself said, “I came so that you may have life and have it to the full” (c.f., John 10:10). God became man to offer us the fullness of life. But, if we agree with Becker, living the fullness of life would only lead to an increase of anxiety in the face of death. And so what did Jesus do about this? He died, rose, and conquered death. He shared in our humanity so that through his death and rising from the dead he might free us from our slavery to the fear of death (c.f., Hebrews 2:14-15). As Christians, this is where our response of accompaniment stems from: from our faith that God became man, took on our humanity; and it flows from our radical confidence in the Resurrection of Jesus Christ from the dead. The Incarnation and Resurrection change everything. It’s as simple as that.
Thank you for your attention, and God bless you,