There is a meme circulating that said something to the effect of
Our grandfathers had to go to war.
We are asked to sit on the couch.
We can do this!
Well it turns out we can do more than sitting on the couch. This is the equivalent of enlisting during wartime and it’s filling out and signing an Advanced Care Directive. This is a widely-accepted form where you can specify that you do not wish to be put on a ventilator should you be hospitalized. You can find a wealth of details on the web, but start with this good overview on National POLST’s website.
This doesn’t mean you will die a painful death, this just means the hospital staff can provide pain relief, nutrition, and even other respiratory aid (such as CPAP) should you need it, but not go to the extreme measure of intubation and a ventilator.
Every state has a form which you can find here on AARP website. It’s relatively straightforward and there’s a section for specifying what treatments you do and do not wish to have performed. California’s form, for example, says this
OTHER WISHES: (If you do not agree with any of the optional choices above and wish to write your own, or if you wish to add to the instructions you have given above, you may do so here.) I direct that...
We can crib the language from a POLST (Physician Orders for Life-Sustaining Treatment) which is a second directive used for people near end-of-life (more on that below). This standard form has a nice, succinct description that’s useful and familiar to medical professionals so there’s no room for confusion. Simply stated, it says no ventilator (among other things)
Selective Treatment – goal of treating medical conditions while avoiding burdensome measures. In addition to treatment described in Comfort-Focused Treatment, use medical treatment, IV antibiotics, and IV fluids as indicated. Do not intubate. May use non-invasive positive airway pressure. Generally avoid intensive care.
You can use the POLST form to crib other language you may wish to specify about CPR and nutrition, but in the COVID-19 era, the one above is the most important.
If you are chronically ill or very infirm, the POLST is a good idea too. This is a bit stronger legally because it’s executed with your doctor and is an official doctor’s order specifying what treatments are applicable. You’d have to discuss this your doctor because she has to sign it along with you. In assisted living facilities, this is typically kept posted in the bedroom of the residents in case the EMTs are called.
So, if you want to be a hero by potentially sacrificing yourself for the common good, this is what you need to do. Encourage your family and friends to do the same.
Note: I am not a medical nor legal professional. This is a suggestion for you investigate and act to help fight the battle we are facing. I do speak with some experience, though.
(warning, graphic medical details below)
Five years ago my daughter was hospitalized in the Mt. Sinai PICU with ARDS (Acute Respiratory Distress Syndrome). She was on a ventilator for weeks and I was a firsthand witness to the whole process since they permit a parent to sleep in the patient’s room. I was there from the first day from a cannula, then an oxygen mask, then CPAP, then intubation, and finally a tracheotomy.
They initially assume the patient is infectious so everybody has to “gown up” before entering the room (Since I snuck in right at the beginning and I stayed in the room, I was grandfathered in). This is a laborious process that every nurse, doctor, aide (PCA) has to do every time they enter the room. It takes minutes to do correctly and the personal protective equipment (PPE) they use is tossed afterwards. This is what is going to be in short supply.
After a week, they determined what she had was not infectious so that protocol was no longer needed. That would never be the case with a COVID-19 patient. Every single time a caregiver enters the room — and the team is huge — they will use a disposable gown, mask, gloves, and maybe face shield.
Life with ARDS (which is how COVID-19 manifests itself) is not pretty. You are heavily sedated (an induced coma). The ventilator inflates your lungs at a high pressure trying to get some oxygen in your blood. You are fed through a tube in your nose. You may be tied to the bed because when you thrash, you dislodge the various tubes keeping you alive. You have bouts of tachycardia. You are feverish. You have pneumatic “leg warmers” on your calves periodically squeezing so clots don’t form in your legs. Every hour or two, your lungs have to be suctioned. You get x-rayed every day in your bed to see how filled up your lungs are.
If you survive, you won’t remember any of this.
But the hundreds of times a caregiver will have entered your room, they are exposing themselves to COVID-19. Think about that. This why you should fill out the Advanced Care Directive; you can take control of the situation and in the terrible event you crash with this disease, you can sacrifice yourself to protect those medical professionals.
Postscript: My daughter had a faulty immune system which caused the ARDS and many other complications that stretched out over two years with many ICU stays (but only one involved ARDS). She got a new immune system from a bone marrow transplant and she’s back at university and thriving.
Two things to be eternally grateful for
- people, like her donor, who sign up as potential bone marrow donors (It’s easy, painless, and most likely you will never be called bethematch.org)
- the incredible dedication and self-sacrifice that medical professionals do every day in normal times and infinitely so today