@brenfrancisco.bsky.social
Until then though, having read all of her EHR, I, in effect, have veto power over her treatment. Though she may not realize it, she's relying on me to speak up, should the endless hardships her Drs. ask she endure ever become needless hardships. ∎
January 26, 2026 at 5:33 PM
Until then though, having read all of her EHR, I, in effect, have veto power over her treatment. Though she may not realize it, she's relying on me to speak up, should the endless hardships her Drs. ask she endure ever become needless hardships. ∎
As a consequence, even if my mom is only “partially fully informed”, she can be “fully fully”, should she ever feel motivated to check her EHR herself.
January 26, 2026 at 5:33 PM
As a consequence, even if my mom is only “partially fully informed”, she can be “fully fully”, should she ever feel motivated to check her EHR herself.
I wouldn't say that informed consent in the context of high patient mortality and high patient anxiety is a myth at RIH for some patients. Rather, it's an opt-in system. The same doctor who spoke algebraically spoke clearly & confidently about facts & figures in the notes buried in my mom's EHR.
January 26, 2026 at 5:33 PM
I wouldn't say that informed consent in the context of high patient mortality and high patient anxiety is a myth at RIH for some patients. Rather, it's an opt-in system. The same doctor who spoke algebraically spoke clearly & confidently about facts & figures in the notes buried in my mom's EHR.
The gaslighting is as much for the patient’s support structure as it is for the patient, for the same reason. A caregiver that sees the storm over the horizon might not work as hard, seeing the endeavor as hopeless (miss me with that self-fulfilling prophecy ish tho).
January 26, 2026 at 5:33 PM
The gaslighting is as much for the patient’s support structure as it is for the patient, for the same reason. A caregiver that sees the storm over the horizon might not work as hard, seeing the endeavor as hopeless (miss me with that self-fulfilling prophecy ish tho).
My mom would hate to hear the unobfuscated answers to her questions b/c they’d reveal the direness of the straits she's navigating.
January 26, 2026 at 5:33 PM
My mom would hate to hear the unobfuscated answers to her questions b/c they’d reveal the direness of the straits she's navigating.
I always forgive a doctor’s machinations. In small part b/c it’s so funny to watch. But in large part because I know they’re stuck between a rock and a hard place. Between “first doing no harm” and “informed consent”.
January 26, 2026 at 5:33 PM
I always forgive a doctor’s machinations. In small part b/c it’s so funny to watch. But in large part because I know they’re stuck between a rock and a hard place. Between “first doing no harm” and “informed consent”.
He disclosed her 5-year chance of remission would be “whatever your odds would be w/o treatment, plus 33%”.
January 26, 2026 at 5:33 PM
He disclosed her 5-year chance of remission would be “whatever your odds would be w/o treatment, plus 33%”.
When my mom asked if the 20-or-so patients that went through RIH's new consolidative therapy in the last 3 years were doing fine, her (typically clear & confident) doctor, in a low & indistinct voice, said (what sounded like) “sure” and gave (what looked like) a thumbs up.
January 26, 2026 at 5:33 PM
When my mom asked if the 20-or-so patients that went through RIH's new consolidative therapy in the last 3 years were doing fine, her (typically clear & confident) doctor, in a low & indistinct voice, said (what sounded like) “sure” and gave (what looked like) a thumbs up.
But when it came to backing up this unennumerated “chance” with facts & figures, we were met with rumblings & riddles.
January 26, 2026 at 5:33 PM
But when it came to backing up this unennumerated “chance” with facts & figures, we were met with rumblings & riddles.
Her doctors were less enthusiastic talking about side-effects, but they still did. They knew, like their other patients, that my mom would endure endless hardships for even the “chance” of daylight between themselves and their disease.
January 26, 2026 at 5:33 PM
Her doctors were less enthusiastic talking about side-effects, but they still did. They knew, like their other patients, that my mom would endure endless hardships for even the “chance” of daylight between themselves and their disease.
I'm sure doctors have constraints about what they can safely say (b/c they always do) but I can tell they take comfort in telling a patient that they're trying to help.
January 26, 2026 at 5:33 PM
I'm sure doctors have constraints about what they can safely say (b/c they always do) but I can tell they take comfort in telling a patient that they're trying to help.
Her doctors had no trouble talking about a treatment’s intent. Earlier this month, millions of people around the world said their “intent” was to start exercising in 2026. By the end of the year, unfortunately, many of them will fail. But they will try again. There are no limits to intent.
January 26, 2026 at 5:33 PM
Her doctors had no trouble talking about a treatment’s intent. Earlier this month, millions of people around the world said their “intent” was to start exercising in 2026. By the end of the year, unfortunately, many of them will fail. But they will try again. There are no limits to intent.
For instance, is the treatment’s intent palliative, curative or something in between? How much does it make the good percentages bigger, and the bad percentages smaller? What are its side effects tomorrow and its side effects in the years to come?
January 26, 2026 at 5:33 PM
For instance, is the treatment’s intent palliative, curative or something in between? How much does it make the good percentages bigger, and the bad percentages smaller? What are its side effects tomorrow and its side effects in the years to come?
Previously, I’ve said a patient doesn’t need to know the nitty gritty details about their disease. But what about the bigger, notty grotty details? The details that would affect a patient’s decision-making? That answer is less clear.
January 26, 2026 at 5:33 PM
Previously, I’ve said a patient doesn’t need to know the nitty gritty details about their disease. But what about the bigger, notty grotty details? The details that would affect a patient’s decision-making? That answer is less clear.
A few days ago, I discussed the culture of compassionate dishonesty surrounding bad diagnoses to which I had been made a participant as my mom’s caregiver.
January 26, 2026 at 5:33 PM
A few days ago, I discussed the culture of compassionate dishonesty surrounding bad diagnoses to which I had been made a participant as my mom’s caregiver.
I should say tho, mom has been better lately about acting in good-faith. For instance, she knew to use the bathroom again once she no longer had SOB with exertion. Mom-from-the-past would have said "give me 2 more weeks with the commode and then I will consider using the bathroom". ∎
January 25, 2026 at 6:24 PM
I should say tho, mom has been better lately about acting in good-faith. For instance, she knew to use the bathroom again once she no longer had SOB with exertion. Mom-from-the-past would have said "give me 2 more weeks with the commode and then I will consider using the bathroom". ∎
I will, uh, probably just thank them for their service. ∎
January 25, 2026 at 1:51 PM
I will, uh, probably just thank them for their service. ∎
"...basically, her TFH cells are like bad bouncers. They're letting any B cell into Club Plasma with no vetting. Even if they're not wearing shoes, carrying a gallon of gasoline, etc. So these B cells end up torching & stinking up the place. And red blood cells are like, the furniture..."
January 25, 2026 at 1:50 PM
"...basically, her TFH cells are like bad bouncers. They're letting any B cell into Club Plasma with no vetting. Even if they're not wearing shoes, carrying a gallon of gasoline, etc. So these B cells end up torching & stinking up the place. And red blood cells are like, the furniture..."
I snagged the "Thank a Donor" card off my mom's IV bag. I hadn't noticed it before!
Hm, they recommend talking about why my mom needs the blood... how much time do I have because I will need 3 or 4 hours to get it right.
Hm, they recommend talking about why my mom needs the blood... how much time do I have because I will need 3 or 4 hours to get it right.
January 25, 2026 at 6:28 AM
I snagged the "Thank a Donor" card off my mom's IV bag. I hadn't noticed it before!
Hm, they recommend talking about why my mom needs the blood... how much time do I have because I will need 3 or 4 hours to get it right.
Hm, they recommend talking about why my mom needs the blood... how much time do I have because I will need 3 or 4 hours to get it right.
Very satisfied /w the results of my digital detox. This place is nice but it's a political echo chamber. Everyone here seems to be either In Favor or Very In Favor of one thing, and then Against or Very Against another. You can't waste time arguing online if no one is arguing 🧠
January 24, 2026 at 10:05 PM
Very satisfied /w the results of my digital detox. This place is nice but it's a political echo chamber. Everyone here seems to be either In Favor or Very In Favor of one thing, and then Against or Very Against another. You can't waste time arguing online if no one is arguing 🧠
I forgive her for trying to keep me around by any means necessary... I'm just too damn pleasant... ∎
January 24, 2026 at 5:12 PM
I forgive her for trying to keep me around by any means necessary... I'm just too damn pleasant... ∎
Ultimately the tie-breaker is whether saying "no" is the right thing to do. And yes, a person resuming their ADLs is essential for their muscles, self-esteem, brain, etc. Fortunately, this is a lesson she already taught me years ago. Her dog attack debilitation turned out to be a dress rehearsal.
January 24, 2026 at 5:08 PM
Ultimately the tie-breaker is whether saying "no" is the right thing to do. And yes, a person resuming their ADLs is essential for their muscles, self-esteem, brain, etc. Fortunately, this is a lesson she already taught me years ago. Her dog attack debilitation turned out to be a dress rehearsal.
It's both Very Hard & Very Easy to say "no" to very sick parent. Very Hard b/c every parent uses the "I won't be here forever"-card, and her card is like, EXTRA good (holographic, 1st edition, etc). But also Very Easy b/c if you walk away, they're too tired to follow you. So it's 1-1.
January 24, 2026 at 4:55 PM
It's both Very Hard & Very Easy to say "no" to very sick parent. Very Hard b/c every parent uses the "I won't be here forever"-card, and her card is like, EXTRA good (holographic, 1st edition, etc). But also Very Easy b/c if you walk away, they're too tired to follow you. So it's 1-1.
But most of the things I've done for her lately would not be done by her otherwise. I acknowledge that she WISHES it were codependent, sometimes being resentful of me for spending less time helping her when her counts are good, but I have no problem saying "no".
January 24, 2026 at 4:54 PM
But most of the things I've done for her lately would not be done by her otherwise. I acknowledge that she WISHES it were codependent, sometimes being resentful of me for spending less time helping her when her counts are good, but I have no problem saying "no".