Currently Reading

Rehabilitating Death by J.C. Scharl

8 minute read

Read Previous

The Sorbonne Ransacked by Students Challenging the Vote by Hélène de Lauzun

Pandemic Economics: Spain the Only EU Country Still Limping from COVID by Bridget Ryder

Read Next

Essay

Rehabilitating Death

"Valentine Godé-Darel im Krankenbett" (1914), a 63 x 86 cm oil on canvas by Ferdinand Hodler (1853-1918), located in the Kunstmuseum Solothurn, Switzerland.

A few weeks ago, following years of cancer treatments, my mother died. There are many things for me to process, of course, but one thing that particularly stings is the way the crushing optimism of modern medical experts robbed me of the chance to prepare more thoroughly for death. 

I do not intend here to complain about specific failings in my mother’s care; I believe that her doctors cared for her the best that they knew how. Rather, it is about a fatal flaw in modern medicine as a whole: the refusal to acknowledge to patients and caretakers that death is inevitable, that it is outside of our control, and that, eventually, all treatment plans end in the same place– the grave. My mother’s doctors persisted in optimism long after it was clear to the people closest to her that she was going to die. From conversations with friends who have also lost loved ones to terminal illnesses, I gather that this unbounded optimism is the rule rather than the exception, and often lasts right up until the days or weeks before a patient dies. 

Perhaps doctors think this is kindness; perhaps they do not think about it at all, and, working on the front lines of a war that will defeat us all (at least in this life), use optimism to shield them from the futility of their task. Whatever the reason, this relentless emphasis, manifested in constant treatment and dislocated from the spectrum of wellbeing—physical, emotional, relational, and spiritual—hurts patients and caretakers alike. By ignoring the naturalness of death, our medical culture is making it much harder for patients and caretakers to prepare for its grievous unnaturalness.

Before the past three months, I had difficulty understanding why so many individuals and nations support far-Left end-of-life policies like physician-assisted suicide. I no longer struggle to grasp this. For people with terminal or debilitating illnesses, the entire treatment experience sets them up to think of death as something within the control of experts, something that an “expert opinion” should be able to stave off or, possibly, invoke. Modern medicine too often masks death’s inevitability, preventing us from doing the emotional, relational, and spiritual work necessary to die a death of true surrender and peace. 

Part of the problem is that there is simply too much treatment; there are too many things we can try to stave off the inevitable. Obviously modern medicine has wrought wonders, but nature does not surrender her secrets freely; these wonders come with a price. The price is that, nowadays, a person who is diagnosed with a terminal disease must choose just how long and how hard he is going to fight a battle he cannot win. 

For terminal or debilitating illnesses, modern medicine seems to swing between two extremes: the ‘treatment-above-all’ extreme, in which the patient is subjected to an endless sequence of surgeries, radiations, prescriptions, and experiments; and the ‘we’ve reached the end of the road’ extreme, when the specialists who until now have been deeply involved simply cease offering help, leaving patients and caretakers exhausted and stunned by what appears a sudden and radical pivot. In the interim between being abandoned by the medical system and entering hospice, caretakers and patients are faced with a gauntlet of choices about just how long and hard they are going to fight the inevitable. Even those with the strongest convictions about the sacredness of human life often confront choices which imply that we can—and ought—to have control over when we die. 

Let me give you an example. My mother eventually could not eat, so she received nutrition through a drip line that fed directly into her heart. This method is supposed to be used for short periods of time to help a patient gain strength in preparation for some treatment that would restore digestive function. But my mother never gained strength, so she used the line considerably longer than many other patients would. In theory, the line could have sustained her indefinitely. This miracle of modern medicine which allowed us to put nutrition directly into my mother’s heart had the unintended consequence of forcing her and us, her caregivers, to decide at what point we would stop using it. By God’s mercy, in eventually rejecting the artificial nutrition, my mother’s body made that decision for us. 

There is a special kind of madness to modern medicine that comes from hyper-specialization, where a surgeon or oncologist or expert of some kind becomes the measure of reality for a sick person (and the family). The expert makes proclamations based on studies of minute areas of the body, then recommends treatments that obsess over one part of a complex physical system, often at the expense of others. Modern medicine is full of wonders, to be sure, but its sheer power leads its practitioners into thinking of the body as a puzzle to be solved. Too often during my mother’s treatment, doctors communicated their conviction that they could control death. 

This attitude led to some of the most harrowing episodes of my mother’s long death. At one point, a surgeon who had treated my mother for years declared that he “could fix her,” a statement that considerably buoyed my father’s flagging hopes. The surgeon persuaded my mother to undergo surgery, even though many members of the family were not confident that she was strong enough to survive it. Days later, after the failed operation, he told my father there was nothing more he could do. This was a devastating turnabout, as nothing in the surgeon’s words or manner had indicated that we were near this point. Yet our eyes, looking at my mother as a whole person, had long seen this truth that did not shown up on X-rays and CAT scans: she was dying. 

Death is not something we can avoid forever. Modern medicine’s failure to look at patients as whole people, each of whom will certainly die someday, makes the system incapable of truly caring for patients who cannot be fixed, or of supporting their caretakers. Instead, the whole burden of navigating care for the terminally ill lands on family and friends, the majority of whom are simply not prepared to deal with the complex needs of a patient who has spent months, sometimes years, in debilitating treatment. 

In the last six months of my mother’s life, there was one week when my father took her to the emergency room three times (twice during the night), each time spending an average of eight hours there. On two of these occasions they received opposite advice about the same problem. An emergency room visit each week was the norm rather than the exception. Each time my father would be dealing with a doctor unfamiliar with my mother’s case, so he had the terrible responsibility of conveying her situation to the treating physician, then cross-referencing all the conflicting information he had received, to figure out how to care for her at home. He did all this while trying to navigate the gruesome American health-insurance system and hold down a full-time job. My parents did not receive an advocate within the medical system to help them manage the ever-increasingly intricacies of her care until just months before she died; not until my mother entered hospice, four days before her death, did someone in an official capacity begin preparing us for the emotional reality of her death. 

Terminal care no longer accepts its sacred responsibility for telling people, “You are going to die, and soon, and this is how.” It no longer encourages them to balance the pursuit of treatment with emotional and spiritual support. Rather, in our hyper-technical culture, the conversation turns continually back to, “What do we do next?” as though the body were a computer with a glitch in the programming. No heed is paid to the reality–that the time will come when we do nothing. 

But that is the truth, whether we acknowledge it or not: for all of us, at the end of our days, the only thing we will be able to do is nothing. Each of us reaches a point where we must simply wait for what is coming. 

This is where the widespread embrace of physician-assisted suicide makes perfect sense, for the whole apparatus of modern medicine is set against the peaceful transition from treatment to acceptance. We are primed to think of death in terms of choice, so as soon as we acknowledge that we are going to die, the natural impulse is to say that we should die right away. Modern science has led us to believe—falsely, but fervently—that we control our bodies and that we have the right and the burden of choosing how to dispose of them. When there is no hope of healing; when the burden on our caretakers or ourselves is too much; when the financial or emotional or relational costs of waiting for death are too high, or the pain is too great; we have been trained to think that we have a right, or even a responsibility, not to wait.  

There is no easy solution to this, because ultimately there is no easy solution to death. Even to a Catholic like myself, the solution, such as it is, is a hard one: it required the death of God Himself, and still requires each of us to walk through death in hope that it is not the finality it appears. But the rehabilitation of death is a necessary project for those of us who believe in the dignity of every human being. Plato said that philosophy is learning to die well; Aristotle saw a necessary connection between the good life and a good death. In the Middle Ages, Catholics prayed for a long, lingering death, because this would allow them to make peace with God and with their fellow human beings. It is wrong to deprive people of the chance to prepare for death, because such preparation, rightly undertaken, illuminates our lives, encouraging us to make the best of them. 

J.C. Scharl is a Senior Editor at The European Conservative. She is a poet and playwright, and her work has appeared in many American and European magazines and journals. 

Tags: