We’re approaching half a million deaths from the coronavirus in the US. But most of these deaths — and the grueling medical ordeals leading up to them — have remained largely hidden from view. The majority of terminally ill Covid-19 patients typically spend their last days or weeks isolated in ICUs to keep the virus from spreading.
“Most of what I’m seeing is behind closed curtains, and the general public isn’t seeing this side of it,” says Todd Rice, a critical care and pulmonology specialist at Vanderbilt University Medical Center. Even “families are only seeing a little bit of it,” he says. As a result, most of us have been “protected and sheltered from seeing the worst of this disease.”
So what have these nearly 500,000 people endured as the infection took over and their bodies failed? The terrible details have been strikingly absent from most of our personal and national discussions about the virus. But if we have been thus far (perhaps somewhat willfully) blind to the excruciating ways Covid-19 takes lives, this milestone is an opportunity to open our eyes.
Four physicians, who collectively have cared for more than 100 dying Covid-19 patients over the past 11 months, shared with Vox what their patients have gone through physically and mentally as the virus killed them. Their experiences reveal the isolating and invasive realities of what it is typically like for someone to die from Covid-19.
Lungs “full of bees” and a “sense of impending doom”
The torture of Covid-19 can begin long before someone is sick enough to be admitted to a hospital intensive care unit.
Since the coronavirus attacks the lungs, it hampers the intake of oxygen. People with worsening Covid-19 typically show up in the emergency room because they are having trouble breathing.
As their lungs deteriorate further, they have a harder and harder time getting enough oxygen with each breath, meaning they need to breathe faster and faster — up from an average of about 14 times per minute to 30 or 40. Such gasping can bring about a very real sense of panic.
Imagine trying to breathe through a very narrow straw, says Jess Mandel, MD, chief of pulmonary, critical care, and sleep medicine at UC San Diego Health. “You can do that for 15 to 20 seconds, but try doing it for two hours.” Or for days or weeks.
Patients struggling through low oxygen levels like this have told Kenneth Remy, MD, an assistant professor of critical care medicine at Washington University School of Medicine in St. Louis, that it feels like a band across their chest or that their lungs are on fire. Or like a thousand bees stinging them inside their chest. Others might have thick secretions in their lungs that make it feel like they are trying to breathe through muck. Many people say it feels like they’re being smothered.
The ordeal is so taxing that many wish for death. “You hear the patients say, ‘I just want to die because this is so excruciating,’” Remy says. “That’s what this virus does.”
Others feel that death is coming no matter what they do. Rice notes that much more so for his Covid-19 patients than others he has treated. There seems to be something about Covid-19 “that makes people prone to having a feeling of, ‘I really believe I’m going to die.’”
Meilinh Thi, MD, who specializes in critical care and pulmonology at the University of Nebraska Medical Center, has witnessed the same thing. “A lot of patients, regardless of age, have this sense of impending doom,” Thi says. Many have told her outright they felt like they were going to die. Eerily, “Everyone who has told me that has passed away,” she says.
The agony of being critically ill with Covid-19 isn’t just borne by the body but also by the mind. “It doesn’t only put your lungs on fire or give you a horrible headache or make you feel miserable or make you breathe really fast,” Remy says. “It also wreaks havoc on your mental state.”
For one, from the time anyone with Covid-19 is admitted to the hospital, they are essentially cut off from almost everything that is familiar. Most Covid-19 deaths have occurred in hospitals, but Centers for Disease Control data show that some are also dying in long-term care facilities (about 10 percent) or at home (about 6 percent).
“A lot of patients have told me how isolating and how lonely it is,” Thi says. And many get depressed. It is also incredibly scary to reach that point of illness with a disease that we know has already killed so many people, she and others point out.
All of these challenges have a cumulative effect. “If you can understand being in the hospital for two, three weeks, continuously breathing that fast, not having good interactions with your family because they can’t come and visit you,” Remy says “It’s extremely anxiety-provoking. It’s scary.”
Being in the ICU for any reason also vastly increases a person’s risk for delirium, a state of confusion that can result in agitation, fear, and anger. Medications used to sedate people or relieve pain (both common in Covid-19 treatment) are part of the reason for this risk, as are the constant monitoring and physical disturbances — and subsequent sleep disruption.
Being a Covid-19 patient increases this likelihood of disorientation even more. Some estimates put the rate of delirium among adult ICU Covid-19 patients at about 65 percent.
One reason for this extra risk is that the only people patients see are covered in head-to-toe PPE, often with only their eye area visible behind a shield or goggles, rendering them even more anonymous and unfamiliar. (ICU nurses have described working alongside the same people for decades and now not recognizing them due to all of the protective gear.) “That for sure increases the risk of delirium,” Thi says.
As a Covid-19 patient, “You’re just devoid of human contact to a large degree,” Mandel says.
And that is no small thing. With loved ones relegated to video calls, personal connection through in-person visits — typically a mainstay during an intensive hospital stay — is gone.
“If your mom or dad or spouse was in the hospital and was very sick, you would be at their bedside holding their hand,” Remy says. With fatal Covid-19, your last meaningful contact with family, before your final hours, might be as you get admitted into the ER, days or weeks before.
Doctors often have to use many invasive procedures to try to save lives
Anyone unwell enough to be in the ICU for any reason will be hooked up to lots of machines. But people with severe Covid-19 face a particularly grueling and invasive experience.
When people can no longer breathe for themselves and still aren’t getting enough oxygen with external sources (like short nose tubes or a BiPap machine, like those some people wear for sleep apnea), the next step is usually putting them on a ventilator.
To do this, patients are put on IV-based sedation and pain medication so they can tolerate the procedure. A tube is inserted into the mouth and down the airway so the machine can pump air into the lungs. The tube can remain there for days or weeks, during which time that person will remain heavily sedated and unable to talk. (This sedation can also mask other problems that arise during their illness, such as major strokes.)
Those who have survived the ordeal often don’t even remember the day leading up to being put on ventilation, Thi says. “They say they really just lost that portion of their life.”
The ventilator itself is not without risks. For example, if the machine is set to deliver too much air, it can cause additional lung damage. And the breathing tube only tends to be safe to keep in place for about two to three weeks, Thi notes. After that, it can start to deteriorate. At that point, doctors might surgically insert a tube into the patient’s neck — a procedure known as a tracheostomy — to connect them to the ventilator.
For some, even mechanical ventilation can’t get them enough oxygen. These patients often get put on “heart-lung” machines, which pump blood out of the body, through a machine that oxygenates it, and back in. (These are also sometimes used for people who have suffered a heart attack and are known to have numerous side effects, such as increased risk for strokes as well as for agitation and delirium.) This process requires two large catheters (long tubes) inserted into a major artery or vein, so the machine can effectively pump enough blood in and out of the body.
Flipping people onto their stomachs has also helped get more air into their systems. During this practice, called proning, the sick individual is typically put on a medication to paralyze them so they cannot move. (Medical staff also turn incapacitated patients in bed every couple of hours additionally “to make sure their skin doesn’t break down,” Thi says.)
A significant proportion of people — somewhere between about one in five and one in three — who get very sick with Covid-19 also end up with kidney failure. To prevent this from killing them, they’re put on dialysis machines, which take blood out of the body and filter it before returning it to the body. This procedure can cause nausea, cramping, and chronic itching. Anyone getting dialysis will need two additional large catheters put into another major blood vessel.
But these aren’t all of the tubes critically ill Covid-19 patients need. They also have a central venous catheter to administer medication. This long tube usually gets inserted into a major vein in the jugular, clavicle, or groin, then is pushed through the vein until it reaches the heart, where it will stay until that person recovers or dies. Another catheter, sometimes put in near the groin, will take the person’s blood for analysis.
Other catheters will be inserted into the urethra to drain urine (which is monitored closely) and the rectum to frequently evacuate their feces (which is especially important because Covid-19 often causes diarrhea). Additional IVs, such as for hydration and medications, will poke patients in smaller vessels as well. People this ill with Covid-19 will also have a tube put into their mouth or nose and down into their stomach to deliver a nutrition slurry to prevent malnutrition.
On top of all of these tubes and needles, a number of other beeping and humming devices monitor a person’s vitals. Leads attached to the chest tracks heart function, and a pulse oximeter on the finger keeps tabs on oxygen saturation. A standard cuff monitors blood pressure, but people also often get an additional catheter into yet another vessel to measure blood pressure from within that artery.
All of these incredibly invasive interventions have a goal of sustaining the body simply so that it can try to fight off the virus and heal. “The technology we have is very powerful in terms of keeping people alive but less powerful at turning things around,” Mandel says. “It’s always a race.”
But even all of these procedures — alongside treatments like dexamethasone and remdesivir — are not enough to save everyone with Covid-19. Some people decline to go through some or all of this or at least to endure it indefinitely, but that does not guarantee a lack of suffering. And for those most unlucky 1.8 in 100 people confirmed to have Covid-19 in the US, death will then be imminent.
Once someone is sick enough with Covid-19 that they need a ventilator, their chance of survival is somewhere between 40 and 60 percent, notes Remy. “You flip a coin, and you may be one of those people who die,” he says.
Remy recalls one particularly difficult week during the fall surge when he cared for a number of people in their 40s and 50s who ultimately died. Most of them were obese but otherwise healthy when they caught Covid-19 by not wearing a mask.
“One of the[se] patients specifically told me before I put the breathing tube in, ‘let everyone know that this is real, my lungs are on fire. It’s like there’s bees stinging me. I can’t breathe. Please let them know to wear a mask…because I wouldn’t wish this on my worst enemy.’”
Right after that patient died, he made a precautionary video that he posted on Twitter.
If a patient’s breathing deteriorates slowly, hospitals can often arrange a way for them to talk with family members before they get intubated. Because after the tube goes in, they might not be conscious or able to talk again before they die. Regardless, the last person they have conscious contact with is typically a member of the medical staff before they are heavily sedated to receive the ventilator tube. In essence, “It could be anybody,” Rice says.
Despite the strict isolation for Covid-19 patients, “We try to make sure patients don’t die alone,” Thi says. For those who quickly nosedive, there often isn’t time to bring in family. Those people die surrounded by medical staff, either receiving CPR or, if they had do not resuscitate orders, with staff standing by.
For those whose fall toward death, family — in full PPE — are now typically allowed in (which wasn’t usually the case at the beginning of the pandemic). At that point, “We would proceed with comfort measures only,” Thi says. In this scenario, the dying person will be on heavy medication as the ventilator tube is removed. Even still, once it gets taken out, people often gasp or cough as the body fights for air before they die.
Despite the palliative care and the possibility for family to now be present for a person’s actual death, doctors describe Covid-19 as a uniquely terrible way to die. “Covid is just so different,” Thi says. “I don’t think anything could be comparable to it. … I don’t wish it on my worst enemy.”
Remy agrees. After having cared for patients dying from infectious diseases all over the world, he says, “I don’t know a disease that wreaks such havoc on the body and on the mind.” Which is perhaps why his dying patient was pleading with him so desperately just before being intubated to tell people to wear their masks and take the virus seriously.
Because otherwise, it will continue to take thousands of lives this way each day in the US until we can get vaccines to almost everyone.