Never before have we had so much information about a new disease and so little certainty about what it all means for us. The news media report that there are at least three new variations of the virus—two are more contagious. One might be more deadly, and herd immunity through vaccination is a long way off. It’s both anxiety-provoking and a cause for anger at the people who are supposed to be figuring this all out. Scientists tend to make people more anxious because they choose their words in such a careful, specific way. When they say “We have no evidence that X is causing Y,” they don’t mean that X definitely does not cause Y. They mean that they don’t have any evidence one way or the other. Uncertainty, especially from experts in a crisis, is very hard to bear.
In the United States, our political polarization, especially during a pandemic, contributes to the stress, regardless of which side you are on, or even if you don’t care either way. When people around you are stressed, it’s more difficult to regulate yourself, perhaps especially if you are not as upset as other people are. Death has become a number that gets bigger every day and there is no authority that seems able to stop it.
The last thing you want to think about is the possibility that you might get sick and die; but every time you walk out the door you have to think precisely that. You may have to put on a mask (or two, now), grab some hand sanitizer and wipes. You can’t bag your own groceries in many places. You can’t eat in a restaurant, much less make your own salad or even pour your own coffee. You certainly can’t travel anywhere without contemplating your own mortality, so since you have to face it anyway, this is a good time to face it squarely.
What if you did get Covid? What if you were sick for a long time—or died of it? Do the people you love know what you would want them to do? You need to write down your thoughts and discuss them with the person who you would chose to enforce them, your healthcare agent (https://dyingwithwisdom.com/advanced-directives/). Think about the consequences for your friends and family if you are medicated and cannot make decisions, so they have to make them for you. Already stressed by their own battles in life and work, now they have to make life and death decisions for you without knowing what you want. It’s a lot to ask of people you love.
So now—if I’ve effectively guilted you into a proper awareness of your responsibility—I want to supply you with some frank information about the decisions you’d need to make, especially if you become sick with Covid.
First and foremost, think about whether or not you want to die a “natural” death. What this means today is that you do not want to be hooked up to tubes and fancy equipment designed to prolong your life when you are dying. Of course, a natural death can be eased by pain and anxiety medication. Do you want that kind of help? That is called palliative care and is discussed more fully in this article (https://dyingwithwisdom.com/palliative-care/).
If you’re still young, you may want doctors to do everything they can to save your life. As you get older, you may begin to feel more comfortable with a natural death and palliative care. Let’s say that doctors have told your family you’re not likely to survive if they disconnect you from any equipment they might be using to prolong your life. What should they do? For most people the answer here is “It depends on what you mean.” Let’s start with the basics: food and water. Do you want a feeding tube, or intravenous hydration? Hydration has few risks, though it may prolong your life at the very end. A feeding tube, on the other hand, can be uncomfortable, upset your stomach, and cause irritations and even tears in your intestines. WebMD (https://www.webmd.com/digestive-disorders/feeding-tube-placement#1) has a very good description of the procedure and the possible side effects.
Do you want to be put on a ventilator? As the doctors at Yale (https://www.yalemedicine.org/news/ventilators-covid-19) explain, many people need to be on a ventilator for a few hours, or even a few weeks; but when it gets beyond three weeks or so the chances of recovery decline, especially for older people. Since you will probably be sedated once you are on a ventilator, your family needs to know not only if you want one to begin with, but also how long you are willing to lie prone (on your stomach) and sedated. Ventilators work better when the patient is in a prone position. Ventilators can cause lung damage if something goes wrong, and patients can develop pneumonia if bacteria enter the breathing tube. Here, you should think about whether you would want to be treated for pneumonia with antibiotics that could prolong your life. If things get very bad, doctors could recommend a machine that helps you breathe and makes the heart beat regularly, a heart/lung machine. You should also make an advance decision about that. The Newsletter of the British Medical Journal outlines the many considerations concerning ventilation (https://www.bmj.com/content/372/bmj.n121).
Here’s another Big Question:
Do you want to be resuscitated if you die?
This is a basic decision you need to make, especially if you’re dying at home, because EMTs are required by law to try to resuscitate you if you don’t have a Do Not Resuscitate (DNR) order in plain sight. Without such an order, they’re required to perform CPR until you revive or are declared dead by a physician. Recently, the research has suggested that CPR is overused, causing more suffering for the dying patient, whose ribs may break in the process.
If you want to avoid CPR and other forms of resuscitation, you will need to have an order signed by a doctor. It’s called a Physician Order for Life-Sustaining Treatment (POLST). Once a patient is in the hospital emergency room, doctors are usually reluctant to discontinue CPR without express instructions to do so. Because a POLST is an actual order from a physician, EMTs and doctors will honor it. It even follows you to a recovery facility or nursing home when you leave the hospital.
Making your wishes known to your healthcare agent, filing a DNR with a physician, and posting a POLST on the refrigerator door are the safest ways to ensure that you’re your wishes are followed. These documents also need to be revised from time to time as your situation changes. You should also have a basic Living Will https://dyingwithwisdom.com/advanced-directives/ that you’ve discussed with your healthcare agent so that they feel they’re doing the right thing when the time comes.
The news media have recently reported that many people who are dying of Covid want to be at home. They avoid going to the hospital when they are very ill because they are afraid to die in an ICU without family or friends to comfort them. This website contains two articles on dying at home—one on the necessities https://dyingwithwisdom.com/dying-at-home/and one on the downside considerations https://dyingwithwisdom.com/dying-at-home-the-downside/ . You should look them over before you decide how you stand on this issue. It poses a number of challenges beyond the contagiousness of the virus and you need to know what you are asking for if you want to die at home.
There is no doubt that planning ahead can save your family lots of anxiety and, often, conflict. When no one is sure what to do or what you want, there can be important social, emotional, and financial consequences. At the very least, you should have a conversation with the people close to you now.