Bill St. John typically writes about food for UCHealth. This week, he shares his insights on dying …. and living.
Where to start with advance care planning
The Colorado Healthcare Ethics Resource Group has created guides and tip sheets to help people consider specific medical treatments, values and decision-making during the COVID-19 pandemic.
“Conversations about things we do not have power over help to give us a sense of control,” said Peggy Budai, a nurse practitioner for UCHealth who serves on the state committee that created the guides. “We cannot predict every choice we may have to make, but we can give those we love the guidance to confidently make decisions for us. This is the time to help the people closest to us —our friends, our spouses, our parents or grandparents—get the care that is right for them if they become seriously ill with COVID-19.”
Consider your next steps with these tools:
- Use the Conversation Project’s Being Prepared in the Time of COVID-19 guide and start talking today with a trusted loved one in person, by phone, or video chat.
- Complete a Medical Durable Power of Attorney Document MDPOA. You can fill it out on UCHealth’s patient portal, My Health Connection (helpful instructions), or visit Colorado Care Planning to get tips to fill out their online form.
- Review the COVID-19 Treatment Decision Guide. If you go to the hospital and become seriously ill, these are the questions you likely will be asked.
- Watch the COVID-19 TCP Presentation to learn about advance care planning basics.
We all live in fear now of getting sick. But fear turns into terror when a man fears he’s dying.
I am 70 years old. I have adult-onset asthma. I’m considered a high risk of becoming severely ill or dying of COVID-19. Around 4 a.m. the morning of Wednesday, March 25, I woke in terror.
Intense pain throbbed throughout my lower gastrointestinal tract; six times I spat up bile, the green of the Wicked Witch of the West; a hippopotamus sat on my upper chest; I quivered, I grimaced, I FaceTimed with my doctor’s office, and I got my sad sack to the Emergency Room.
At the hospital, I shook so fearfully that a staff member kindly steadied my hand so that I could pen my signature on the consent forms. I spent the day in the ER, a battery of tests and palpations run on my body so that my insides became my outsides.
But, like so many others right now, I didn’t get a — what shall we call it? — “coronatest.” They weren’t available to ER patients — only admits into the main wards. I understood that; nonetheless, I was scared.
Did I — do I — have COVID-19? Dunno; won’t know.
Or, perhaps, did I just have a norovirus? Many of my symptoms in the immediate days after that Wednesday reminded me of a norovirus that I had contracted while on a cruise in 2005.
Or a brass ring off this season’s merry-go-round of influenzae, despite my Senior+ shot back in the fall?
Or something else? Dunno; won’t know.
In the absence of a coronatest, I don’t know if I have the virus or not. But given today’s communal responsibilities, I am obliged to act as if I do.
Like so many others who are ill, some of whom I know firsthand and others about whom I read, we are in a viral version of “Schrodinger’s Cat.” Scientist Erwin Schrodinger surmised that if you put a cat and something that might kill the cat (he suggested something radioactive) into a box and closed the box, until you opened the box, you wouldn’t truly know if the cat had died. Until the reveal, the cat was both “dead and alive.”
Did I — do I — have COVID-19? I do or I don’t, but I do not know.
What I do know is what I have, symptoms that two friends of mine have had, both
men younger than I, and both of whom tested positive for COVID-19.
The symptoms are, at base, a miserable cocktail of massive fatigue, random body and joint aches, listlessness, shortness of breath even when gently active, significant tightness in the chest, a sort of “muscle nausea,” to devise a term, zero appetite, and headache. All of these have remained constant since day one, although in some instances (for example, headache and joint pain) pretty much disappeared. The others wax and wane daily, in either intensity or presence.
For my part, my pulse has raced (up to 140 once) and I feel forever jittery and squirrelly, what I take to be high blood pressure.
I wish to make clear that I have had none of the certain other symptoms that are often mentioned as common — indeed signal —with COVID-19 (high fever, fibrosis of the lungs, severe respiratory pain, death).
Overall, and as an arc, since my day in the ER, I’ve been improving, but it is slow going and there are ups and downs, sometimes even within the same day. It’s a dispiriting dance.
I tell this as a way to tamp down our shared panic, its knee-jerk hurt to ourselves. Many hundreds of us are ill, suffering through who knows how many different symptoms. It appears to manifest itself to us, among us, in us, in many different ways.
But it isn’t — it isn’t always — the simple math of fever plus painful fibrosis of the lungs plus respiratory failure plus death.
In all of this, tempering the terror and making some meaning of the malaise, a goodness has come to me, just like an April crocus against the grey and sodden earth.
My papers are now in order.
Most of us, it’s clear, have our finger on a cultural pause button concerning public decisions about the ends of our lives. Looked at one way, “procrastination” is just another word for “Nope, not gonna die today.”
But on Thursday, March 26, I wasn’t so sure. So that day, I updated my Last Will and Testament. On Friday, March 27, I printed out all my logins and passwords (the razor wire of our lives) so that my son, Colin, would have them handy.
On Saturday, March 28, I filled out all the crucial end-of-life papers that I’ve intended to complete for — what? ten, 15 years now? — the advance directives for my physician and “Health Care Agent” (Colin, again), those directives laying out with great specificity what medical care (mostly what little) I now choose that will obtain in that time “then.” I used the widely-accepted “Five Wishes” form which is itself a model of present-day giving of care.
As an ancillary directive, I finished the Colorado Medical Orders for Scope of Treatment and had it approved by my physician, a Readers Digest “Five Wishes” with the kicker of a Do Not Resuscitate order right off the top.
Then had all this stuff witnessed, double-witnessed, printed out, placed in my “When I Die” box (a notorious rub — rib? — between Colin and his father). Well, finally, it’s all done, set in ink, and now there. There now, there now.
For a bit over a week now, in the absence of the terrifying calculus that can be COVID-19, I just go on, papers in place. Usually short of breath and often too tired to talk, I just go on.
That’s what’s important to do.
But you there, please learn my lesson and gain my grand feeling too.
Complete those forms (many, such as Five Wishes, both inexpensive or free and available online). It will help you feel better; moreover, it is a gift to others.
And tell everyone, anyone, close or far, who matters to you that they so have and that you love them for it. If you procrastinate, you very well may miss something terribly significant.
Reach Bill St. John at firstname.lastname@example.org