I am an expert in death.
I can tell you that most people when told by their doctor that they have a terminal illness, resist this diagnosis. Many try to deny reality or do everything in their power to avoid it – from praying away their cancer to exercising to pursuing any new treatments available to them.
I believe that all humans should fight to live, but there comes a point of diminishing returns when facing a terminal illness. A point where all of the denial and avoidance of a terminal diagnosis adds up to doing more harm than good for the patient. In other words, where the avoidance of reality often unintentionally compounds suffering rather than reducing it. This ends up wasting the precious little time patients have left.
As an expert in death, I must say that I am witnessing this same cycle of denial and avoidance happening in American governance. The hard truth is that many of our most important institutions face terminal illness – from childcare to education to healthcare. Rather than accepting that reality, our pundits and politicians, and leaders call for more drastic end of life measures and non-existent cures. There might be a better way forward: Let these institutions go. Accept their terminal status. And in doing so, make room for needed rebirth and renewal.
We all want life before COVID-19. But what we really want is life before we lost childcare. Before we lost access to quality schooling. Before we lost lives. But each of these failed systems is merely a symptom of a growing cancer that has been there all along – deep-rooted inequality. So what we ultimately are hoping for is the ability to go back to a life where the failed systems in our country were not so exposed. Where we could ignore the “terminal status” of the many broken institutions in our country.
For a long time, we have been operating with broken, dying institutions. Childcare in America has remained expensive and inaccessible to most, only brought to light more clearly through the COVID-19 pandemic. For decades now, low-income households have struggled to gain access to high-quality childcare. High-quality childcare in America is expensive and often only available in wealthier neighborhoods. The COVID-19 pandemic forced many parents, for the first time, to figure out how to keep two full-time jobs with no real childcare solutions. But this is a reality many lower-income families have faced for decades.
Education in America, commonly believed to be the great equalizer, also suffers from a massively rich and poor divide. The wealthy have access to private schools or the ability to live in wealthy school districts, where the vast majority of good public schools are located. But the poor are left to reside in suffering and broken public school districts that struggle to meet basic needs. This, in turn, creates further divides as children attempt to enter college and higher education, exacerbating long-standing income inequalities in the U.S. These inequities have existed for decades, but COVID-19 and the need to move to remote school is perhaps the first time wealthier Americans experienced what a lack of access to quality education felt like.
Our healthcare systems are also designed to serve the richest and overlook the poorest. COVID-19 deaths have fallen disproportionately on communities of color and low-income communities because our healthcare system favors the wealthy. The root cause of health inequities in America is an unequal allocation of power and resources to low-income communities. For the wealthier Americans, COVID-19 may have been the first time they lacked access to a needed but elective surgery or feared a lack of access to emergency services due to hospitals being overrun with patients. Once again, many of Americas’ poorer citizens have faced these access issues for a long time.
Just now noticing these “terminal cancers” of society mirrors the discovery of advanced, metastatic cancer tumors. The tumors have been growing all along, but we were unaware of them until the symptoms got so severe that we could no longer ignore them. COVID-19 is the “you’re dying” talk our failing systems need.
But we have an opportunity here. We can bravely acknowledge our terminal status. Every patient I have worked with that accepted their terminal status exhibited a rare form of bravery, of not giving up. Bravery to look death in the eye, say “I see you,” and then work towards what is still possible.
But we must bravely look at our dying systems, acknowledge the deep-rooted inequities killing them, and say, “I see you.” In doing so, we can invite the necessary deaths of these systems rather than continuing to believe we can cure them. We can reimagine how these institutions are constructed from the bottom up, making way for a healthier body politic, as well as, true progress.
There is power to change in accepting death. For cancer patients who accept death, they have the power to choose spending final moments with loved ones or breathing in the fresh ocean air rather than in a hospital receiving chemotherapy, often making them feel even sicker and weaker. For Americans who accept the death of these systems, we might hold the power to begin a new chapter where we rebuild systems that actually work for all Americans. Only then will the suffering end.
Megan J Shen, Ph.D., is an Assistant Professor of Psychology in Medicine at Weill Cornell Medical College in the Division of Geriatrics and Palliative Medicine. She is also the Director of the Communications Core at the Cornell Center for Research on End-of-Life Care.