Today, The Institute for Health Metrics and Evaluation (IHME) estimates we are fifteen days from peak hospital resource usage in the United States. I’ve had my anxious moments this month like anyone else but my biggest concern is not for me or my immediate family. It’s for my mom.
Unlike Texas Lt. Gov. Dan Patrick who proclaimed last week that “those of us who are 70 plus, we’ll take care of ourselves”, my mom can’t take care of herself. I am one of the people that take care of her. She lives in a nursing home which two weeks ago closed to all visitors for the health and safety of the residents.
Now, I can’t be there in person. Not even if she gets sick.
What if she does get sick?
This week, I spent some time on the phone to find out. I asked what plans were in place if a resident became infected with Covid-19. The community’s answer, that they were proactively creating a Covid-19 isolation ward, calmed me because it means they expect to be able to continue to care for my mom right where she is.
I also took the time to verify what advance directives they have in my mother’s file. (I am her medical decision maker which gives me the authority to ask questions like this.)
My greatest fear for my mother at this point is hospitalization. She has become weaker each and every time she’s been in a hospital since her stroke in 2012. I am convinced that she would not survive hospitalization for anything at this point, let alone Covid-19. If she were transferred to a hospital for care, I believe that would increase the chance of her dying in isolation.
We actually asked her doctor to put a “Do Not Hospitalize” note in her chart last year. When I asked to verify it this week, the note wasn’t in the chart. I had it added back in, along with a new order: “Do Not Intubate”.
Covid-19 symptoms include difficulty breathing. Sometimes the treatment includes using a ventilator to help a patient breathe, which requires a tube to be inserted in the airway.
Here’s what we’re trying to communicate with this order: do not intubate my eighty-year-old mother. This order gives us a formal way to share our wishes with the people caring for her when we can’t be there and my mom can’t speak for herself. We want them to understand this: if she gets to the point where intubation is perceived as the answer, it’s not. She will not recover. We accept that. We have to. The alternative is worse.
We know the thirty-day survival rate for cardiac arrest in patients over 80 is only around 20%. We understand it’s probably lower for my mom who has several underlying conditions. In fact, my mother has had a “Do Not Resuscitate” order for years. We’ve revised it several times to reflect changes in her wishes and her health.
If she needs treatment, we want her to have treatment. Now, her DNR orders specify that the goal of that treatment should be comfort. If her heart stops beating, the orders are clear: Do not attempt CPR. Do not attempt resuscitation.
Do relieve her pain. Do stay by her side.
Does my rush to update my mom’s advance directives in the face of the Covid-19 pandemic make it seem like I want my mom to die? I hope not.
That’s not what I want.
What I want is this: I want to know she’s in a place where her wishes can be honored; where she will have familiar faces around her if she becomes seriously ill; and where if she has to die, she can die free from avoidable distress and suffering.
Here’s what you can do if you want the same for yourself:
- Assign a delegate. Choose a medical decision-maker and create your own advance directives.
- Make a medication list. This free medication record printable (no email required) includes a place to document allergies and drug sensitivities.
- Pack a bag in case you have to go to the hospital. See this article for a list of items to include.
- Start a conversation with your own parents or partners. This article shares five topics to cover “before”.
- Organize your papers. Take inventory of your personal documents and get them organized.
If you’re feeling ambitious, get everything organized and in one place in case you or someone else needs information in a hurry.