The Truth About Ventilators and Questions We All Should Ask Ourselves
story Kathryn Dreger, MD
(Editor’s Note: Kathryn Dreger is a doctor of internal medicine with a 14-year practice serving patients in Arlington, Virginia. She is also a clinical assistant professor of medicine at Georgetown University and has been rated six years in a row by Washingtonian magazine as one of the “Top Doctors” in the District of Columbia, Maryland and Virginia. Dr. Dreger sent this essay to all her patients, and a copy was forwarded to Valley of the Moon magazine by a family member in Arlington. An edited version of this letter was subsequently published as an opinion piece in The New York Times. We offer it here to our readers because we believe Dr. Dreger is a both wise and compassionate physician with an important message for all of us in this time of pandemic.)
I have been reading and thinking a lot about the COVID-19 pandemic and how it is changing our lives. I thought it might be helpful to share some of the knowledge I have learned.
The days of hunkering down have changed our lives so much. In a world filled with rushing, we have been forced to stop. To sit. To stay. And, it’s forcing me to think differently about so many things.
A few years ago, one of my patients came to the ER with breathing that had gradually worsened over several weeks. A CT scan found so many blood clots in her lung vessels that she would have died had she not called in time. I saw her in the hospital and she was terrified by how close she had come to death.
I understand that now. All of us live our lives with the vague knowledge that we will die one day, but we can go months, even years without ever facing it. COVID-19 is changing that. Our own mortality and the vulnerability of our parents and grandparents is suddenly laid bare
It’s easy to be afraid, even terrified at these times. That’s a normal reaction for all of us. And, we can all stay there, in that space, afraid and anxious, or we can look at things differently, see them in a different light.
I remember telling my patient that she should see this as an opportunity. If she had waited another day, she would have had no choices. Her life would be over. She had been given it anew. What would she like to do now?
Millions of us are home now, alone or with family, and we have been given the time and perspective to see our lives afresh. What do we miss? Who do we long to see, to touch, to hold? Do they know? Have we told them how much they matter? In this time when our worlds are so much smaller, what do we value most? And, when this storm has passed, how will we use that knowledge to change the lives we lead?
Unfortunately, some of the people we know will not survive this storm, and that knowledge drives our fear. I thought it might be helpful to explain how COVID-19 kills us, because we are less frightened when we understand.
I’d like to start simply with how the lungs and heart are supposed to work. When we take a deep breath, air is taken into our windpipe. This pipe branches into two large pipes which branch again into smaller pipes, then branch again and again until the pipe is a tiny tube less than 1 mm across. At the end of that tube is a cluster of microscopic sacs called alveoli. The lining of each sac is so thin that air floats from the sac into the red blood cell. Carbon dioxide floats in the opposite direction and we breathe out. The lung has missions of these air sacs, each so soft, so gentle that the lung itself has almost no substance. Touching it feels like reaching into a bowl of whipped cream, light as air.
COVID-19 changes all that. To explain how, I want you to remember the last time you scraped your skin. Did you see that golden fluid leaking out? Perhaps you put on a Band-Aid, and when you removed it found a sticky, gummy layer on your skin. COVID-19 causes that same thick substance to fill the air sacs. This layer of gunk stops oxygen from flowing easily and makes it hard to get rid of carbon dioxide. If only a few air sacs are filled, the rest of the lung takes over, but a lot of this goo (called exudate) in a lot of air sacs and the lung texture changes, beginning to feel more like a marshmallow than whipped cream. This terrible lung disease is called ARDS – Acute Respiratory Distress Syndrome. It’s been around for years and is caused by a huge number of different diseases. COVID-19 is just one of them and it’s incredibly lethal. Oxygen levels fall, and without a ventilator, people die.
A ventilator is a machine that blows air into the lungs. Doctors insert a tube about 10 inches long into the mouth, down the throat, past the vocal cords into the windpipe. The tube is secured in place on the person’s cheek, and the end is connected to the ventilator. It helps people with COVID-19 in two main ways. First, very simply, it can deliver more concentrated oxygen directly to the lungs. The problem is that high concentrations of oxygen can actually poison the air sacs, adding to the inflammation, worsening the damage the virus is causing in the first place. Second, the ventilator helps by increasing the force, the literal pressure of the air entering the lung. If the lung has become stiffer and more solid, the “marshmallow stage,” then more force is needed to get the lung to inflate. Higher pressures can also keep open whatever air sacs have not already filled with inflammatory gunk.
Forcing concentrated oxygen into the lungs doesn’t change how thick the gummy layer is in each air sac, and it doesn’t fix the damage the virus is doing. It just buys time for the illness to resolve by itself. But in many cases the damage grows worse instead. The lung texture turns into something closer to a stale marshmallow, the ones we sometimes find alone in the back of the pantry, solid and stiff. I spoke to a kind intensive care unit doctor who has been treating COVID-19 patients. She told me, “I feel like I’m trying to ventilate bricks instead of lungs. Even 100 cc (1/3 cup of air) won’t go in.”
Today’s ventilators are very clever, though. They can blow air in slowly and steadily, building up the pressure to open the lungs. Using these settings, doctors are trying hard to get the air in, but – this is really important – people are not awake for this. None of us can tolerate these ventilator settings without being sedated. All the patients with COVID-19 who are on a ventilator are in a medically-induced coma. They are not awake to suffer, and they cannot talk to us. They cannot tell us how much of this care they want.
Ventilators just buy us time. They keep oxygen going to the brain, the heart, the kidneys, all the while we hope the infection will ease, the lungs will begin to improve. But during that time, the strain begins to show. The heart has to pump blood through a stiff, rigid lung. This is incredibly hard work, and for those of us who are not in great cardiovascular condition, the strain can cause its own sets of problems. Heart failure can arise or worsen, and blood pressure can fall. Some patients develop shock, or their kidneys fail. Being on a ventilator is called being on life support for a reason.
Doctors are left with impossible choices. Too much oxygen damages the lung, but too little damages the brain and kidneys. Too much air pressure damages the lung, but too little means the oxygen can’t get in. They try to optimize, to tweak, nip and tuck. Eventually though, all that effort may not be enough. No matter how loved, how vital or how needed a person is, all the machines in the world cannot ventilate a brick-like lung. The rest of the body begins to collapse. Death, while typically painless, is no less final.
For the small fraction of patients who are ventilated with COVID-19 and actually survive, they have a long road ahead of them. The amount of sedation needed for people to tolerate these intense ventilator settings causes profound complications. Muscles are damaged and people have tremendous difficulty even walking. Nerves can be harmed as well, both in the limbs and the brain itself. Recovery takes months to years, much of it spent in the nursing home. Many older patients who survive ARDS from other causes never go home. They live out their days bed bound, at higher risk of recurrent infections, bedsores and trips to the hospital.
COVID-19 is too new for us to know what will happen in a year to those who survive. But the severity of ARDS is far worse than we have seen with other diseases. People are going from the “marshmallow stage” and needing a ventilator, to rigid, “brick-like” lungs within a day instead of a week.
Given, COVID-19 also attacks the heart muscle itself. For the few people who make it through all that, and get off the ventilator, 30 percent die suddenly two-to-three days later from heart damage.
Fortunately, for most people with COVID-19, none of this comes to pass. A cold, perhaps a nasty flu is all they experience. But for 5 percent of our population, things are much worse. Their lung damage is bad enough to require hospitalization for oxygen. About 20-to-30 percent of those develop full ARDS and need ventilators. We have been told that COVID-19 is more dangerous in the elders in our community, and hopefully this essay has explained why. It’s not that people don’t get ARDS when they are younger. The average age of people infected in Wuhan was 52, but this kind of lung disease is just so much harder to survive if we are weaker to begin with. Imagine an 85-year-old smoker on oxygen who develops ARDS from COVID-19. Regardless of how hard we try to save him, it doesn’t look good.
That does not mean we don’t try, but it does mean we ask this man some serious questions. Does he want to go on life support? Does he want weeks of machines and a long recovery, or does he just want to be made comfortable, to meet his end in peace?
I can’t answer that question – none of us can. But we can ask ourselves some different questions. We can look at this in a different light.
What do I value about my life and what does it mean to me? If I am dying and I will die by the end of the day if I don’t go on a ventilator in a medical coma, do I want that life support? If I go on the ventilator, but my lungs become stiff and hard, do I want to keep going? Do I want a tube put through my abdomen into my stomach to give me liquid food? Do I want a tube put through my neck into my windpipe to keep me on the ventilator?
No one can make these choices for us, and no one will know what choices we’ve made unless we tell them. Right now, all over the country, patients are being asked to make these difficult decisions at a moment’s notice, while they are on the verge of dying, breathless and terrified. Once patients are on the ventilator, if they get worse, if their lungs turn to bricks, critical care doctors are having to ask their family members what the want done. Not face-to-face, and not in the room looking kindly at their loved ones, placing a gentle hand on a shoulder. COVID-19 is too contagious. These conversations are happening over the phone. It is yet another heart-breaking reality of dying during a pandemic. The patient cannot tell us, and the family isn’t there and might not know.
I don’t want any of you to get COVID-19, and if you do, I certainly don’t want you to need to make these decisions. But I would rather ask now, when we are calmer and more rational, than ask in an emergency. I view these questions the same way I think about taking an umbrella out in the rain. Take the umbrella, and it never rains. Leave it at home, and there’s a downpour.
If you don’t want to be put in a medical coma on life support, then please let your family know. Appoint the person you want to make decisions for you and let your doctor know your wishes. (It’s probably not a bad idea regardless of our current pandemic.)
If you do want everything done, your doctors will do so to the best of their abilities. This terrible time is pulling us all together. We are all doing so much for each other. In fact, our entire quarantine and social distancing is being done to save 2 percent of us. It is an amazing act of love and kindness. It is my fervent hope that this essay will allow the few who fall seriously ill to understand what is happening and have the kind of care they always wanted.