When COVID-19 first emerged as a threat in the U.S., the stories about the course of the disease were terrifying. Stories of people dying or ambulances shrieking through the night were enough to make you want to pull up the covers and sleep until the whole ordeal was over. My husband and I had decided if we got the disease, we did not want to go to the hospital and potentially die alone on a ventilator. We would stay in our apartment, maybe use supplemental oxygen and health aides, but tough it out until we either got better or had to call Hospice. It didn’t help that the media covered the horrors night and day, and that we woke up every morning to ever mounting death tolls here and around the world.
About a week ago, we listened to an interview by health advocate Alexandra Drane with the noted palliative geriatrician Dr. Diane Meier. What she said made us realize that there was more to our choice than stay at home vs. go to the hospital. For people of our age (late 70s and early 80s), the risk of waiting too long to get help might be too great to avoid the hospital altogether. The majority of people who have been admitted get better and go home in recovery. However, she explained that the course of the disease was erratic. A person could feel mildly to moderately ill, but within a matter of hours or days, the disease could take a dramatic turn and we could need hospitalization — “stat” as they say.
One indicator of the need for hospitalization might be a sudden drop in your blood oxygen. This emergency room physician observed that getting a pulse oximeter and keeping track of your blood oxygen at home might literally save your life by getting you to the hospital even before you felt “out of breath.” The normal range of blood oxygen is 93 to 100. If you found that your oxygen had dropped below 90 into the 80s, you would want to call your doctor right away. (The pulse oximeter is between $20 and $30 and won’t work if your finger is cold or you have nail polish!)
The story of a physician couple in New York brought home the reality that, even if you are clinically trained, you can miss symptoms in yourself or your partner that can be deadly. The wife took care of her husband for over a week, but one day he started coughing, and within hours she had to call 911 because he was too weak to walk upstairs to the car. While he was in the hospital, she monitored his symptoms remotely. She watched his C-Reactive Protein levels, his oxygen saturation, his respiratory rate. As he struggled, she found out she too was COVID-19 positive. Fortunately, her symptoms were mild and she was able to take care of him again when he ultimately did return home. The point of this story is that people have different reactions to this virus, and making hard and fast decisions before you know what your condition will be just doesn’t make sense. With these stories in mind, we concluded we should not wait to go to the hospital if we have symptoms, particularly a drop in oxygen as measured by the oximeter.
As important as it is to think about what you want — before you need to make the decision — it is also important to tell your family what your wishes are. Who will be your trusted advocate if you can’t speak for yourself? If you are single, is there a friend or family member whom you can designate (be sure and ask them first if they are willing to do that!)? Some family members may not want to talk about this at all. In that case, what should you do? You can tell them there is something important to “you” that you want to discuss and ask them when would be a good time to talk about it. If they still don’t want to talk about it at all, it is best to write down what you want and find another person to be your trusted advocate.
It was difficult for my husband and me to have this conversation with each other, and even more difficult for our children to hear what we wanted to tell them. I can’t say I feel all that much better after thinking this through, but for us, the alternative to planning and thinking ahead was clearly worse. COVID-19 has caused us all to face things we never wanted to face, and have conversations we hoped we would never have to have. There are many compassionate providers working on these very issues, and hopefully your doctor and your family will help you think through your choices.
P.S. Recently, it has become clear that people are not calling 911 or going to the hospital when they really need hospitalization for a serious medical problem because they are afraid of contracting the virus — but hospitals are no longer so impacted and the professionals do know how to disinfect, so do not hesitate to go if you need it!
(This article is an excellent resource for figuring out what to do if you or your loved one need to be in the hospital.)