What it’s like to die from covid

I had an odd interaction with a patient a few weeks ago. I was encouraging him to get the vaccine, telling him it was safe and effective. I dispelled all his fallacies claiming lack of research, rushed to the market, lack of long term data, and that as a late 40s guy he was at low risk for adverse effects or death from covid. I pointed out that he deferred to experts in his everyday life, trusted driving on a brand new bridge the day it was built (did not need any long term data there), and told him of several 40 year olds I had seen who had died or maybe wish they had died from covid. His response was that he was not scared to be dead. He said, if I am dead, I will be dead, so I won’t care. He has a young daughter. I told him his daughter would care. He said she would be alright without him. I told him it is not the being dead that is so scary, it is the dying part. He said he thought he would be sedated and unaware for that whole process. That is what baffled me the most. He had literally no idea how people die from covid. I want to dispel that.

I have a unique perspective as a resident. I work in the outpatient setting, trying to get people to get vaccinated (honestly this is a ridiculous part of my job and pains me-it is like arguing with a toddler over eating their vegetables). People come into clinic with early signs of covid and test positive. I work in the emergency room where I see people starting to crump from covid. Some of them need inpatient management so they get admitted for respiratory support. I’ll see them on the hospitalist service. And I’ve helped manage their care while they’re in the ICU needing maximal ventilatory support. I’ve had pregnant moms right when they first get covid all the way through their post 28 week induction and ICU stay needing intubation with very premature baby that they can’t see in the NICU. I’ve seen patients every step of the way.

I’m new to this job but I can say, with the exception of cancer, I cannot think of any common disease that I would less rather die from than covid. I wouldn’t wish it on my worst enemy. I outlined for that patient how the process goes and I want oblivious people like him to know:

Please, please if you had a loved one die of covid or feel unsettled by this disease or death, STOP READING HERE. If you are not vaccinated, please go get vaccinated. I wish no one had to know what this process is like but if you are vaccinated and wearing masks and social distancing, please do not read on any further-you are doing the right thing and should not have to know what this process is like. This is not an easy post to write or to read.

You decline the vaccine for some ridiculous mumbo jumbo reason. You go to a college football game and someone is coughing next to you for hours. A few days later you feel really crappy, bad cough, muscle aches, fever, can’t taste anything or smell anything, and you go see your primary doctor who tests you and diagnoses you with covid. Go home, minimal, really poor symptom relief with garbage placebo over the counter meds. You just feel awful, at home, quarantined, by yourself.

Someone feeds you from the other side of the door. You see no one for days. Or if you live alone, you have to do everything for yourself while getting progressively more and more short of breath and miserable. Eventually you feel like you’re drowning, you can never get enough air and you’re exhausted. You drive yourself to the emergency room, immediately get put on oxygen with a small nasal cannula. You’ll need to be admitted to the hospital. Think about the last loved one you saw because there is a chance that you’ll never see them again.

You are admitted to the hospital, put on some desperate meds that have hardly any benefit but it’s the best we have against this relentless virus. Everyone who sees you treats you like you’re toxic waste. We’re gowned, gloved, masked, sometime with an inflatable helmet on to filter out the infectious air you’re expelling. No one wants to come in your room. If you need something, it takes a while because someone has to put on all this garb every time. You’re alone in your cold, stale room, desperate for air, reaching for every breath, all day. You cannot sleep well because when you do you get more short of breath. You feel like a kid holding their breath under water and needing to come up for air. But that sensation is inescapable now.

Eventually your breathing is so bad we put you on high flow nasal cannula, CPAP, or BiPAP. Now you have a huge uncomfortable tight mask that rubs your skin raw. It shoves air down your throat. You now feel this constant pressure of air being forced into your lungs. Every patient hates it but without it they die. A loud generator shoves this air into you 24 hours a day. You’re still alone other than the constant roar of the machine keeping you alive now. Everyone who comes in now yells at you so you can hear them over the machine.

Your breathing is still worsening. You feel exhausted and like you’re drowning. Now every day we come in and are talking to you about putting a breathing tube down your throat or transitioning you to comfort care and letting you die. Those are your options. You know the breathing tube is what you need. But here’s the dilemma: at this point it is a 50/50 chance you survive. If we intubate you, you’ll potentially never really know which side of the coin flip you landed on. You’ll spend most of the rest of your days unconscious with people managing your every bodily function. Do you stay conscious and miserable, kicking and screaming knowing that you will eventually die but at least you were there for it? Or do you let us intubate you and eventually your family will very likely have to make the difficult decision to let you die?

You’re desperate, feel like you’re dying already and you want to take your chances with living so you let us intubate you. We sedate and paralyze you and take over your breathing. You won’t be completely unaware the whole time though. You’ll remain sedated other than a daily awakening trial where we’ll wake you up and you’ll feel so miserable with the tube down your throat that you’ll try to grab it and pull it out so we rapidly re-sedate you. Now your organs are failing. We’re watching your urine output decline, a marker of kidney function in your blood worsen, your liver is taking a hit. You have a rectal tube in place for your bowel movements, a catheter in your urethra for urine, a tube down your throat for breathing, a tube down your nose and into your stomach to feed you a brown slurry from a bag, a tube in your neck into your blood to give you a constant flow of medications. You are in charge of nothing now. We roll you onto your face every couple hours to help your breathing so you lay face down, completely limp and naked half the day.

Now it goes one of two ways:

You may start doing better. We’ll start having the discussion with your family of cutting a hole through your abdomen directly into your stomach to continue feeding you and we’ll want to cut a hole in your trachea to get the tube out of your throat. We’ll do this and you will wake up, unable to talk because air doesn’t pass over your vocal cords anymore. You will feel awful. You may need dialysis for the rest of your life because your kidneys are dead. And you may need oxygen forever because your lungs will never fully heal. You don’t have the be old and frail for this to be the case. We’ve all seen this happen to people in their late 20s.

Or it could go the other way:

Things are declining, your organs are failing. You family decides it’s time to stop the fruitless efforts. We choose to make you comfortable. However, we cannot keep you sedated and let you die. We legally have to take you off any medications that may compromise your ability to survive on your own. So we take you off many of the meds, you wake up, and then we pull the tube. You gag with the discomfort and start reaching desperately for air. You are conscious and drowning from the fluid in your lungs. We give you meds to help with the pain and air hunger but you’re there with us. In early covid family was not there. It was just you and usually a single person who knows you in no way other than that they’ve cleaned the stool off of you, tended to your pressure wounds, changed your urine bag, and given you meds.

You eventually get so confused and lose consciousness, your breathing is desperate, there is so little oxygen being delivered to your tissues that your extremities turn blue. Your organs are all rapidly dying now. Your heart muscle is dying with so little oxygen. It starts beating irregularly and ineffectively, delivering even less oxygen to your body. We stand there and watch as you die. Your brain is getting so little oxygen now that you are essentially dead but your heart still beats a fluttering beat.

Then it stops.

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