I'm an acute care speech-language pathologist. In the hospital my primary job is to work with patients with swallowing issues. I had a COVID patient who was on 100% oxygen for two months and didn't have the physiologic stability to eat an ice chip without having their heart rate go to the 160s and respiratory rate go into the 40s or 50s because she had pulmonary fibrosis from COVID. Every two days I had to explain to the family that the patient wasn't safe for oral intake. They always wanted to know when she would get better but it's not my role or scope to say she wouldn't, and none of the doctors would say so, but I knew the truth the entire time.

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Great post. I wish I had a better understanding of this a few years back when my old man was going through his cancer treatments.

Sorta similar to you Luke, me & my dad were on pretty rocky terms. After he was diagnosed with lung cancer, it felt like he finally gave a shit about having a relationship with his kids and granddaughter. We grew just close enough again so when he died I was basically mourning the loss of this relationship that could have been.

I think the last conversation I had with him, he said he felt like he wasted his life, and was pissed he never got to retire. I really didn't know what to say to that, besides "Yeah dad that really sucks."

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Apr 18, 2021Liked by Luke O'Neil

they do such good and compassionate work in an environment that does not reward patience. i honestly continue to be thankful palliative care is even allowed to exist in hospital settings where everything revolves around getting people out of the hospital asap. i worked in administration supporting inpatient physicians for a few years at a major hospital and there was always this pressure on the palliative team to only really let people die in the hospital if there was no other way to discharge them to die elsewhere. deaths occurring in the hospital were considered bad metrics, as were re-admissions (even if the re-admission was unrelated to the first admission), and impacted insurance payouts.

i'll always remember one of the palliative docs asking me to specially order a dark fleece blanket for one of the patients on their team. whatever he was dealing with included bleeding, and the doc didn't want the blood to be visible on the hospital's light sheets while his family was with him in his last few days. the other special order i did for someone else was for headphones. the doc was told the patient liked a certain kind of music. even though he was unconscious from admission up until his death, she made sure he had something to listen to. there were always these little details the team would try and pay attention to and i'm grateful we (administration) recognized the importance of that and supported it.

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Thank you for this Luke. I subscribed just to read it and it did not disappoint. I’m an internal medicine resident so I have ample experience with COVID both in the regular hospital and in the ICU. COVID is horrible. Just horrible. A quote from one of our ICU specialists always stood out to me: “this isn’t medicine. This isn’t critical care” and it always struck me as true. It has such a higher mortality rate (once someone is intubated, anyway) than almost any other critical illness. It just saps your spirit.

I’m often in the room during those meeting with the palliative care doctor or NP. Usually it takes years to get good at those conversations for residents. Well, thanks to COVID’s accelerated course I’ve become an expert at telling people there’s no hope left. It sucks.

I could probably go on for ten pages about this but anyway thank you for this Luke I appreciate it.

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There's a lot of evil things in this world, but cancer is right up there with them. Took the most headstrong, determine person I know, who lived with and conquered and overcame any obstacle life could throw at her and just shut her down. She had 2 palliative care nurses who ended up leaving, because what could they do to help a person who didn't want it. The grapefruit sized tumor was the death sentence, but starvation and malnutrition was the ultimate end. What can you do sometimes. Thank you to the people who try to make it just a little bit less shit

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Apr 17, 2021Liked by Luke O'Neil

Luke, Maybe the most important post you ever wrote. I sat in a room with my brother when the palliative team came to visit. Their first question, "Tell me what you understand about what's happening?" Jesus, if you don't have a clue what's happening, and all the medical team assumes that you do, then you're really in a jam. How the fuck are you going to make any kind of decision. Thanks for addressing this. I'm passing it around, and so should everyone else. DPC, RN

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