Dr. Riegel was a senior resident when I was in medical school, then a palliative care fellow when I was a resident. During my fellowship, she was one of my most treasured attendings, and now I am honored to call her a dear friend. She is an extraordinarily talented writer and I am so excited to share her work here.
“Why did I keep stressing what was and was not normal, when nothing … was?”
- Joan Didion, The Year of Magical Thinking
“Certainty? In this world nothing is certain but death and taxes.”
- Benjamin Franklin
In normal times, under non-pandemic circumstances, yesterday being April 15 would have marked the United States’ traditional Tax Day. With one certainty, taxes, already rescheduled, we know that we are not in certain or normal times. This year, the novel coronavirus pandemic elevates the immediacy of that other certainty: death.
Since 2008, April 16 is designated as National Health Care Decision Day (NHDD). According to The Conversation Project, “this day exists to inspire, educate and empower the public and providers about the importance of advance care planning.” It is a day that people are encouraged to think about things such as living wills, or advance directives, or durable power of attorney. It is also a day for people to simply begin the conversations about how they want life to look even in the face of death.
It is in the particulars of the way that the novel coronavirus behaves, infects, and manifests in us that further raises the urgency to pay attention to advance care planning. By now, it has been widely reported that this virus can strike people of any age, and create a critical illness scenario in an unexpectedly short timeframe. People have heard about ventilators, life support, acute respiratory distress syndrome (ARDS), and other aspects of medicine often reserved for the intensive care units and the people who work in them. People have heard about families not being able to physically come to the bedside to visit their ill or even dying loved ones. People have heard about potential ventilator shortages or lack of intensive care resources needed to try and offer life support and stave off the effects of this virus.
People have heard a lot about this virus, and a lot about its dangers, and many feel stricken powerless. “There’s nothing I can do,” is a thought that enter people’s minds and, like the inflammatory cascade the virus sets off in the lungs, a cascade of anxiety or other emotions is set off.
What if there is something you can do, though? What if, despite all of your hand washing and mask-wearing and social distancing you still get sick. What if, despite access to the best health care and medical professionals you still get even more sick.
This is where many people will stop thinking further, will look away from this thing that is so big and so scary, and wrap themselves in a sort of denial.
But this is right where you can also win back control.
Yes, despite all the things you think you are doing right and all of the best medical treatments available to you, there is a chance that you might get coronavirus and be one of the people whose body will not outlast it.
Take a pause here and look that right in the eye. Let yourself sit with it. Let yourself feel that sink in, as scary it feels.
Now, step back from it, and realize that right now, in this moment, you are okay. You are alive.
And now, knowing that this virus may be your life’s end, but also knowing that you are currently well and able, what you are looking at is the space and time of possibility. The possibility to discuss and determine what matters to you if your life might be limited and how you would want those last days or hours to be.
At times, this is a very practical set of decisions: do I want to be on life support until my body stops despite everything being done to try and save it, even if it might cause discomfort or distress? Do I only want life support long enough for my body to show whether or not it can overcome and recover from this virus, but if my body is telling my doctors and nurses it will not recover, then let the life support stop so I may exit in as natural a state as possible? Do I not want life support started, at all, so that I may be as comfortable and in as natural a state of being as possible should I exit this world?
Sometimes these decisions become more layered with personal practicalities: Who do I want to be at my side if they only let one person come to me as I die? How do I want my family to be made aware of my condition, and do I want to have them virtually present on a phone call or video call if I am dying? What things do I want to make sure people know – the passwords, the account numbers, and also the parts of love and forgiveness and acceptance I want them to have of me?
These aren’t easy questions to answer, and the answers are never the same between any two people. The answers are often not even the same for the very same person depending on the circumstances and any other conditions or factors that might influence their likelihood of recovering. One person might say, “if I ever have a severe head injury I would not want to be kept alive with life support, but if I need life support to try and survive coronavirus then I want it used until the very end.”
People might, perhaps even ought to, consider making one set of plans and directives “in the event of coronavirus,” but another set for “all the other things that might befall me.”
There is also the matter of practical limitations that this virus puts on options. We know that large rooms full of family members surrounding a bedside, singing hymns or laughing at family stories – which all of the times I have witnessed I have said “this is a beautiful way to die”—are simply not going to be possible if the culprit is coronavirus. We know that funeral traditions and ceremonies are not going to be the same. We know that this virus will take lives, and will rob people of the idyllic death and their families the gentle closure that we all hope for.
Yet, there are still ways to try and salvage something peaceful and loving from this death. Some people might decide that, rather than wait for their breath to be taken and their time to be short to try and share their feelings with people they love, they might write letters now (here’s a secret: letters will keep, and regardless of when they must be read, they will always be treasured). They might make phone calls now, to say something even as simple as “I need you to know I love you, and I always want you to remember that.” (Here’s another secret: loving words always keep in the heart, and will always be treasured as well).
Author and physician Ira Byock has offered a simple set of “The Four Things That Matter Most” to provide a framework that simply but fully encompasses what we all want to hear and what we all want to say: Please forgive me. I forgive you. Thank you. I love you. Even if you say this to someone, with no other explanation, they will remember it and cherish it.
Other guidance and resources exist for walking through these decisions. The Conversation Project (www.theconversationproject.org) has a number of tools, ranging from ways to get conversations started to actual documents and state specific information. They have added COVID (coronavirus) specific pieces as well.
The fact is, despite it being the certainty we all have ahead of us, no one wants to think about death. The fact is also that, despite what Mr. Franklin said, there truly is only one certainty and none have yet found a way to elude it, regardless of how much they try to deny it or avoid it or pay or pray or delay their way out of it. It is this ominous reminder of our fragility and mortality that is helping unsettle all of us right now, but there is also still opportunity for finding peace now and in the longer term by addressing advance care planning. It is gift to yourself, and an act of love to offer your family and the people who care about you who will still be able to know they are following your wishes, eased of that burden, whenever your death arrives.
drbartlettpear.com 
This morning I have had my coffee, done by quiet time, checked the weather for tomorrow (golf day) and everything was looking great. Looking out the window it looks like a beautiful day. My wife and I plan on doing some planting today. Other than my business being closed all seemed good till I read your Blog. You just put the fear of death in me and reminded me how fragile this life is. And here is what I have to say…THANK YOU! I realize no matter how far my world is from yours right now it could be right around the corner,
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Thanks for sharing the reality of your life and what can be our reality very soon. We have advanced life directives but COVID puts them in another light. I have noticed the media talks about it as a life and death illness and I have wondered about the quality of life of COVID survivors because we don’t see that? Based on some of the damages to organs, there has to be survivors who wish they had made different choices?
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Debbie, that’s a great question. I think it’s too early to know right now. We have patients who have been on life support for 3 weeks and their families have decided to pursue tracheostomy. Some of these patients are also ending up on dialysis which will likely be a long term need. All of my patients who have received these interventions have not been aware enough to make these decisions and so their families have had to make them on their behalf. It will be interesting to see what the long game looks like for these people and if they can recover to what they would consider an acceptable quality of life.
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Last summer we (Six couples) had a Advance Directive Party! Here in Wisconsin they have a basic form that is easy to go through. One of the spouses is a nurse and she got all the forms. Before we started drinking we went through the forms. Discussing different points, giving examples of what we have gone through. One was about life support. My Mother was in the hospital then started seizing. She did not want to be put on a ventilator. Once her Health Care Power of Attorney (HCPOA) was activated, I gave the hospital permission to put her on a ventilator, in order for them to manage her airway during transport to a facility that had 24 hour EEG monitoring. The next day the attending Physician ask me if they had to remove her from the ventilator as per her Advance Directive stated. They had her sedated and needed it to maintain her airway. I said as long as this was the case they could leave it in. 2 days later off the ventilator and a week later transfer to a nursing home. Two weeks later HCPOA rescinded. Month later back to her house.
It was hard but it was also good to get what I wanted down on paper. Two signatures of people not related to me. Making sure all the dates are on the same date (My mom make that mistake). One copy to the Heath Care System. One copy for yourself and those listed.
Next step Pour a stiff drink!! Gather round the camp fire (we did it while camping). Since then my wife and I have witnessed for one of the other couples parents Advanced Directives.
I suggest you all set up a Advance Directive Party!
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