“Ain’t none of us getting out of this alive.“
Five years ago today, I was 8 months pregnant with my family’s first and only grandchild. I didn’t know it at the time but my Dad was about to die. My stepmother had been with him in rural East Texas, and in the beginning he just seemed to have the flu and complications from a recent surgery he underwent. As his condition worsened and the weekend came, he began struggling to breathe. Text messages with the family began to fly back and forth as we decided what to do as his situation escalated. My stepmom drove him to the ER in Houston. When Dad was admitted we thought he would be out in a couple days. He went to the ICU with Acute Respiratory Distress Syndrome, or ARDS.
ARDS is the fatal complication that as of today 140,371 have now died from because of the COVID pandemic. You can read many stories here. Like many people, my fear has reached a whole new level watching this pandemic unfold. As I think about all the families out there going through what my family faced, the PTSD from that experience haunts me and my heart begins pounding. My Dad did not have COVID, yet the decisions are similarly uncertain when a person develops Acute Respiratory Distress Syndrome. As I watch this pandemic unfold, the fear, grief, and immense loss rushes back to me like muscle memory.
My Dad always used to say: “Ain’t none of us getting out of this alive” with a twinkle in his eye. Levity is something that runs in our family. One of the better traits I inherited from him. This little phrase is also one of the last things I heard my Dad say to me. During the two hazy months he was in the ICU, I came to Houston to be with him. For a short time he took a turn for the better: his pulseox is back to 90 he’s going to recover! We desperately scaled the learning curve to learn a new language: understanding how to track O2 and pulse. As the doctors decided a course of treatment, we were all trying to wrap our heads around ARDS intubation.
On April 23 2015, Rex Downing died. Weeks later, his first and only grandson was born.
What do I wish we would have known?
For families that are now experiencing what we went through, I wish I could offer words of wisdom, soothe your fears and grief as this pandemic spreads and severe cases develop into ARDS. The few times Dad was awake, we knew he was in agony and could not talk. We held on to so much hope. I knew that he would want to meet his grandson, who would be born in a few weeks. But in the end, I let go of his hand for the last time.
When unconscious and intubated, we did not know my Dad’s wishes. That was the hardest part when you must choose for other people, and the choices you make are something you live with for the rest of your life. I hope what I am sharing will be somewhat helpful. What I have learned from this experience will help guide me now.
Medicine Is Math.
Five years ago, I wished we knew how the statistics on ARDS could have guided me through the process of understanding decisions to make. The truth is, there’s an extremely high mortality rate for patients who develop ARDS and need a ventilator. The odds of mortality are affected by things like hypertension and diabetes. It’s important to do what you can before getting to an acute stage of this disease.
One of the best things that has helped me is to understand the language of risk and statistics, when making these crucial decisions. Estimates right now are that roughly 20% of COVID patients go on to develop ARDS. These numbers will change as we have better peer reviewed data (and we should beware of preprints of papers when making decisions). To protect your choices, you must use time you have to scale the learning curve about your risks before becoming sick. I recommend this book, and any resources that teach you how to think critically about evidence, rather than resources that tell you what to think. Further, your medical team is your greatest ally. You can them by speaking their language when time is limited. Looking back, it would have helped me to learn about the outcomes of people who are intubated. I would have been able to make an informed decision if I had known where to look in advance, before my dad was struggling to breathe.
Advance Directives Help
I recommend this resource that was created by patient advocate Kathy Kastner. Learn how to make an advance directive before you get sick. I wish that my Dad had a medical advance directive, but this is something most of us do not have. Here is a great example from brain tumor survivor, Liz Salmi. This will help your family and your medical team understand your wishes if you cannot speak for yourself. While thinking about the possibility of one’s own death is hard, it’s also one of the most important acts of agency that a person can make.
Your health decisions must belong to you.
People with COVID who are struggling to breathe can find their oxygen levels dropping. When oxygen drops too low, one must choose to use a ventilator. Sometimes there’s no right answer. What I wish for my Dad, if I could do things over, is a different kind of death. Letting go of what we can’t control is the hardest thing to accept in this pandemic. Some of the greatest experts in the world ask the same questions I am asking. In the face of the inevitability of our own deaths, sometimes there is no right answer. Part of me wants to say that in order to flatten the curve, we must also scale the learning curve so that science and technology works for us instead of against us. Challenging ourselves to understand the limits of science helps, but learning new science and technology can be as dangerous as learning to play with fire. Predictive science and technologies about our health can be weaponized and used against us, when power is in the wrong hands. Another part of me recognizes that the last stage of grief is acceptance. And some things in life cannot be changed – including the inevitability of our own deaths.
We desperately want to control what’s uncertain, so we often cling to numbers, studies and statistics to reinforce a future we hope for. Sometimes the knowledge we share is wrong. Sometimes we just don’t have enough evidence from the right people. Sometimes – like with COVID – there’s a big cone of uncertainty when it comes to who will get infected and who will die, like predicting where a hurricane will hit. We need to better understand what guardrails need to be in place to protect and advance knowledge worthy of our trust. There’s only one certainty over time: ain’t none of us getting out of this alive.
I love you, dad.