[Editor's note: Dr. Cristian Zanartu, an internist and palliative medicine specialist, is currently volunteering at Bellevue Hospital during the pandemic.]
I was angry. So angry. How come the smartest country in the world is acting like the dumbest? Why aren’t health authorities giving us clear guidelines now, before this starts? Like: how to quarantine, how to quarantine from a symptomatic loved one in the same household (we knew by late February from Chinese data that most spread happened inside family households), how to call exposed contacts and tell them what to do. How did the CDC become such a beaten down institution? Blinded by vanity and crippled by old fashioned regulations, it was unable to make testing ubiquitous first by denying the WHO viral test that seemed okay for China, Singapore, South Korea and Europe, and then by allowing testing in the most chaotic form possible and never in the way that testing was meant to save lives: before you made it to the hospital (so that we stopped the spread).
My frustration with the medical system had started before COVID-19. I had worked as a palliative medicine physician — treating the suffering of advanced illness — at a large hospital system for six years. The lack of purpose and humanity that I found working at a large hospital system made me quit hospital practice early 2020 and focus on community care. So by the time the pandemic started hitting New York, my time was mostly spent talking to patients on virtual visits, calming their fears and giving them clear infection-control guidance.
But as the days passed in March, my panic, my fear and the guilt of my inaction as a physician started weighing on me. I was growing more and more frustrated and angry every time I read the New York Times, and every time I watched CNN. Not enough medical supplies to keep health care workers safe? But these gowns are made out of plastic! I cannot even fathom the cost ratio between protecting a nurse in an ICU ($20 to gown them up?) versus placing the established protective gear on an armed American soldier in the Middle East (a couple of thousand dollars, to say the least). We know that the latter have never complained of lack of armor.
The anger just kept eating me up. The fear. The doubt. Should I place myself in the frontlines and become a volunteer? Should I put my own life on the line, when in part it has been this siloed, inaccessible and discombobulated health care system that has put me in this situation in the first place?
And then one morning I woke up and it all had come to a halt. Like a sweet deafness. It wasn’t about Trump and his CDC. It wasn’t about gowns, masks and ventilators. It wasn’t about healthcare systems and the resulting mediocrity in care that comes from institutions that place revenue before health. This was between the virus, the one suffering from it, and me. The rest of you could just shush. CNN, New York Times, The Post, you all shush. I was tired of the panic, the drama, the story, the fear. Stop telling me what COVID-19 is, let me see for myself. I assumed my risk, probably 5-10% of getting severely sick and 0.4-3% of dying from this — since I am young and healthy — and made my peace with it. There was still fear in me, but a part of me was now completely unafraid. Like a vestige of the virtue of doctors that came before me. Of doctors braver than me that held the hand of those first 80s patients with “acute retroviral syndrome” in a time wherein they didn’t even know how HIV was transmitted. Or those doctors that treated the black plague: no N-95s back then I am sure. My medical vocation looked at me and said: “If not to help now, then why be a doctor, Cris?”
I enrolled as a volunteer physician and started working at Bellevue Hospital’s ICU. Shortly after going in, my first mission was calling the family of a 29-year-old to tell them their loved one had died. As the wailing and screams came out of the speaker I thought to myself: “I won’t be able to do this all day.”
But I did. So far I have been called in a handful of days, most of the providers that surrounded me have been there for weeks. An ICU is by definition the concentration of the sickest people suffering COVID-19. Rounds in the morning are a procession of naming a patient, and what new organ system has come to fail due due to the infection. The staff can count the amount of patients that have successfully become free of the ventilator since this started; and the numbers are humbling. One you make it to an ICU due to COVID-19, your chances of making it out of it are 1 in 5, or less.
But here’s the irony. As I was walking through this valley of death, watching these unconscious medical cyborgs — what else can I name someone who’s being breathed, circulated and filtered by machines — I realized the ultimate paradox. Here, in the ultimate phase of the worst versions of COVID-19 — wearing these plastic gowns and this tight mask that is so uncomfortable — here in the end stage of it all, I felt less panic than at home reading the news. Even as I contemplated the possibility of my own body, stretched, numb and in the company of only beeping machines, it wasn’t fear I felt. But rather a whisper of something that in my practice as a palliative medicine physician had become very normal: Oh death old friend, there you are. It is always different to see death unmasked, unholy, demystified and undramatized. The way our forefathers saw it when half of a family’s offspring would die from normative infections while growing up. The way Abraham Lincoln nursed his own 11-year-old to his death and woke up the next morning to lead the union with a grief that wasn’t steered by panic, but humanity.
ICU care of severe cases of COVID-19 has taken a “throw in the kitchen sink” approach. Ventilator, circulatory support with powerful and toxic pressure-elevating drugs, dialysis, antibiotics, antivirals, steroids, anticoagulants, inflammation blockers and antimalarials. ICU doctors frantically adjust ventilator settings, medications doses and request help from colleagues in different expertise areas, just to see the great majority of their patients die. Like any doctor raised by modern medicine, the more helpless they feel, the more technology they throw at the problem. Families cannot witness this heroic yet futile care nor the actual state of their loved ones, since hospitals are off bounds for healthy visitors. In the best-case scenario they get to watch their unconscious loved one through the screen of a heroic social worker’s cellphone doing telerounds.
The situation of those with a critical course of COVID-19 — the 5% unlucky ones that get the worst possible form of this illness — is pretty helpless. Despite being described as ARDS (acute respiratory distress syndrome), the syndrome is clearly much more systemic than justa respiratory issue. Whether it is a “cytokine storm” (an exaggerated and self defeating inflammatory response from the body to the virus that leads to multiple organ damage) or the direct effect of the virus on different organs, COVID-19 infection in its worst form is an uncontrollable accumulation of organ failures, with a big predilection for all the vital ones: lungs, heart, kidneys and liver. The chances of making it out alive once more than three organ systems have shut down is likely less than5%. That is, until we find a cure.
Viruses of the Coronaviridae family have fooled us. Up until four months ago, they were associated with the common cold, even milder than the flu, therefore we were pretty comfortable sharing the Earth and our bodies with them. So 100 years of modern medicine had not even begun trying to vaccinate against them, nor create antiviral drugs capable of containing and stopping them. We are literally starting from scratch.
So for the months ahead — and with NY leading the way — a number of American cities will hit peak without an actual treatment for the virus, and we will see death.
Don’t get me wrong. Fear has been useful. Social isolation is key so that we don’t overwhelm this already frail medical system, and these and other public health precautions have been reasonably fueled by fear. But instead of the spread of the one thing worse than a plague — panic —I want to make an argument for death; for us to dialogue with death.
Plagues are lessons in humility. Reminders of our own mortality. They invite us to prepare for something we have known all along: We will die. Over 126,000 deaths across the globe from COVID-19 by now. This is awful. But just think for a second: This same year, in the same frame of time: probably somewhere around 2-3 million people on Earth have succumbed to cancer. Oh death, old friend: There you are.
How do we build from here?
First, we prepare. Every single person facing this pandemic — and particularly if you are over the age of 65 or have significant medical issues — should be composing their advanced directives, in the event they become one among the minority of unlucky ones with a devastating course of this illness. And these guidelines should be both clear and fraternal. They should be clear in that they should give pristine guidance onto what you want done to your body and what not, and who will be the person making decisions for you if you become this ill. And they should be fraternal in that they should acknowledge that you are not an island; resources will be limited, and any extra day that — potentially futile — resources are used on you means they will be held back from someone with possibly better chances.
These are the hard questions that I will leave with you: If the survival chances of someone over the age of 80 with a severe course of COVID-19 after getting intubated and connected to a ventilator are close to zero, should people over the age of 80 opt to get intubated at all? If the chances of someone with chronic liver, kidney and heart issues of surviving a complicated ICU stay from COVID-19 are close to zero, should they be admitted to an ICU at all?
However, many cases are not so clear; you could be someone younger and/or with just a couple of medical conditions. In that case, how will you guide your loved one who will be making decisions for you if you become ill? I usually recommend my patients to have a clear “cut-off percentage”. What I mean is below which percentage of chance of survival should doctors stop using machines and infinite resources to keep you alive? Below 10%? Below 5%? Below 1%? By the time you have made it to an ICU due to COVID-19, the chances of surviving are less than 20%. Once two organ systems have failed, the number goes further down. Once a third system has fallen it’s safe to say it’s less than 5%. If added complications like clots, bleeding and/or uncontrollably low blood pressure arise, the number can easily plummet below 1%. Arranging for anyof these cut-offs will be useful for the medical staff potentially treating you, and will save your loved ones from making gut-wrenching decisions that they have to live with. Believe me, I had the torturous duty of calling many families of patients with less than 1% chance of surviving their current condition, yet families with no previous guidance from their loved ones had no option but to tell me: “Keep doing everything”. That’s a beautiful dream. In the face of limited resources, that will be a nightmare.
As we mature through this pandemic, our dialogues with COVID-19 and with death will have to change. Society needs to start functioning again, otherwise the harm and death that will come from severely empovershing our nations will add much more catastrophe than the virus ever could. We will not be on lockdown forever. As important as it has been to quarantine and break the curves, we will start to venture back into the world, and panic should not be invited anymore. We will try to keep frail and elderly people on higher levels of quarantine, and the rest of us will cohabit the earth with this new microscopic participant, as we await a successful treatment or vaccine. Hopefully we will do this with the wherewithal that the chances of you being one of the unlucky ones are low, and that if you are one of them, you will face it with as steady of a mind as possible, seeking the care and compassion you deserve, but not chasing oblivious immortality.
In my experience as a palliative medicine physician, one of things I have learned that helps my patients cope better, is truly understanding how death comes. Because it is never like in the movies. In the fear of not wanting to know, we harbor horrible images of how painful, isolating, despairing and out-of-control death can be. And this is very far from the truth.
So how is it to die from COVID-19? If the reason of your death is — like in most cases —multi-organ failure — where your lungs are not able to carry enough oxygen, your circulation is not able to keep a blood pressure compatible with life, your kidneys and liver are in shutdown — then you are by definition unconscious. You are not aware that you are dying. You are no longer suffering. If doctors guided by your loved ones — who are hopefully guided by your directives — decide to stop aggressive life-maintaining interventions, they will be even more resolute in keeping you unconscious and comfortable during your last moments on earth.
I believe the worst COVID-19 suffering is usually before all this, in the fear of having “the disease” and not knowing where the course of it will take you, in that emergency department visit with shortness of breath and multiple gowned providers surrounding you with grim expressions on their faces. These moments must be awful. Whenever I was able to make eye contact with one of these poor souls living their experience of the plague, I tried to keep kindness in my stare, telling them I am only on this side today my sibling, but I will be on your side one day, hopefully as brave as you are.