Angie's daughter is nothing if not practical

This Friday marked the end of week 13 as part of the palliative care team caring for our COVID-19 positive patients. As the days march on we continue to adjust our practice based on experiences here at KU and what we are learning from our colleagues around the the globe. We have become ZOOM experts and I think my Spanish is getting better because I am hearing it a lot. In the first 2-4 weeks if felt like the majority of our COVID positive patients were African American. In the last month the majority are Hispanic. Room after room.

I have lost count of the number of N-95's I have gone through. I don't care what my hair looks like when I come out of a room after removing my PPE anymore. I have stopped wondering about what is coming next as our numbers creep slowly up. Charts like the one below are helpful for some. It quantifies things in a concrete way. For me, this increase registers when I walk through the ICU and see seriously ill patients, on ventilators, some for as long as 6-8 weeks. First with an endotracheal tube in place, now with a tracheostomy.

New patients continue to be admitted and our numbers of COVID-19 positive patients are back where they were a month or so age. One new admission this week is young person in their 20's, who loves music. Someone's son, nephew, brother. I do not see an end in site. What I see instead is a new way of learning to live with this. I am uncertain what it will take for some individuals to believe this is real and take it seriously. Large groups of people congregating in close proximity with no masks (even with masks) is just not acceptable behavior. I have stopped talking back to the TV when people say things that are completely ignorant. It's not helpful.

Last week I participated in an interview session conducted by medical students doing a research project about experiences of providers working with COVID-19 patients.  The last question threw me for a bit of a loop.  She asked "what do you wish for right now"?  I said "more private spaces for having conversations with families". Since then I have been wondering why I said that.  I mean if I was going to wish, why not ask for a reliable antibody test to be available soon, or that a vaccine will be developed in the next several months, or we will return to some semblance of "normalcy" by Thanksgiving. Angie's daughter is nothing if not practical. I am looking for things that will help in real time. Right now. 

We watched this PBS documentary about the 1918 flu yesterday. So interesting to see that many of the things we did wrong 100 years ago, we have repeated, and continue to persist in now. The perspectives of those who lived through that time are compelling and certainly worth watching.  

As always, these are my personal thoughts and experiences caring for patients during the last 3 months, it is not my intent to present myself as an expert, just one person living through it. Much like each of you. 

Comments

[Susan Bjerke]

Thank you again...and again...and again!

[jacki long]

Thank you Carol, and to the many brave souls helping.

[Chris O]

This is all so much closer to hone for you than it has been for me. I have been home, safe and sound. You have been through so much. In MA, things are improving....so far. I hope things get better soon there too.

[Barbara Tarbox]

I read your moving, empathetic posting and don’t find your response to the question
that different than my own would have been.
This pandemic has proven to be beyond our capability to first imagine and now while
living in the midst of it, wrap our heads around how best to deal with it.
As a medical professional, dealing daily with the reality, you have answered with a
practical approach.
It must be more than a challenge to give palliative care to the patients, under these circumstances.
But over and above that, your concern regarding the families and their importance to
making this time of grief and comfort must somehow be honored.
The long term action as to how to address this pandemic is being addressed by those
whose job it is is to find answers. Answers that we hope will be affective and we
pray a vaccine. In the meantime, try to remember the grace and humanity must
be given.

But over and above that, families of these patients who should be
able to aid in that care, must somehow be allowed to give what they can and should
Be able to contribute.
Carol, I admire your courage to continue to serve your patients, to comfort the families
and to fill an important role in their perhaps final days, thank you.

[Vicki in Michigan]

Thank you for speaking truth. Your patients are better off because you and your team are on THEIR team. [tears]

One thing that would help would be leadership at the top that takes this disease seriously, models proper behavior (MASK UP), and who would lead strong policy from the top to do what the science indicates.

:-(

I am working persistently on getting out the vote for better results from the 9/3/20 election.

[Claire]

Agree with all that you have said. We whisked his 94 year old mother out of a rehabilitation hospital after the first positive case showed up. Sometimes I think people are not only selfish and stupid, but that they just don’t care. She is at home in hospice. We still mask up constantly. We are lucky that we found a caregiver for 20 hours a week who is wonderful. But it is incredibly hard being a hardcore safety freak. I have to remind Him to wash his hands....again. I retired from Hopkins so I hear my friends horror stories. I try to be diligent. I don’t want to get beat up for yelling at people to mask up. I feel for you. Day after day. Continue to be the practical person. We all need that right now.