He hammered us with how severe this was and that was. Yes, that is why I am asking the question. "We are asking you to be a thought partner so we can make responsible decisions as the family." I had had pre-conversations with doctor friends to understand the numbers and prognosis
He said "It would be illegal for me to tell you that she won't die, then she dies." Yes, that is why I said LIKELIHOOD - critical care docs deal in likelihoods. It so frustrating to be on this side and not get a fraction of the standard that I have been held to and hold myself to
Then I made the error of saying, "I'm a pediatrician, I literally do this work on family-centered, compassionate care." to which the charge nurse answered, "It is not the work we do. We keep people alive." End of life care IS your job. Planning IS your job. It's not just numbers
Compassion is not only a pediatric thing while critical care/end of life can proudly lack it. I've had more end of life conversations than I want to remember. My mom is not numbers. She is a human being. I am modulating my voice, complimenting you, leveraging my network.
My sister in NJ and I are literally trying NOT to be another critical care patient in a car pile up. This is something an ICU doctor and team should respect. I'm not saying do aromatherapy or music therapy.
https://t.co/Oeyyibw6kH
My mom was awake and alert last night. We asked to speak to her. No, she has no cell phone. There is a way. You can bring your spectralink in.
I know busy. I did 22 admissions one night while doing crosscover. I want to say "burnout" but this sounds like culture.
Thing is you can't win. In a hospital with the iPads and all the resources, there is a higher likelihood of racism/bias. I do NOT think there is any racism here. I think that places that are staffed by minoritized and see minoritized patients often lack resources and compassion.
He seemed to be having a different conversation. And threw in so many things like "if she had a cardiac arrest we should not resuscitate" then my sister asked, "so you would resuscitate?" He said, no she is full code we are legally required to. It was haphazard and hard to follow
I finally got the information that was needed. >50% or <50% chance of her dying in 24 hours. Do I need to rush to get on a flight today? No, she is not "crashing and burning" - uff, my mother is not a bombed aircraft. Tell me in those numbers you love. >/< 50%?
I'll get through this. When on the other side, I am going to follow up with this hospital. This is just not okay
This team is actually making their own jobs harder. All my doctor friend conversations result in a pragmatic realism, not anxiety. I am trying to make safe decisions
But you know how this could go. The average family, including doctor family, might be internally arguing, getting conflicting opinions, and then rather than us de-escalating the clinicians to communicate with us, they would be dealing with fights.
So, I'll get the data from nurses and then I'll keep interpreting it with my trusted doctor-friend-advisors. I am not going to go into that vortex of stress again by asking for information that is given in ways that are anti-communication.
Thing with critical care is numbers do tell the story. FiO2, PEEP, vent settings, P/F ratio, vitals, pressors, etc, etc. I am grateful I have these external resources. My family is able to manage ourselves despite uncertainty and align, share the work, manage.
