Perhaps you could research and recommend low-dose lithium orotate based on recent studies? Not yet proven, but shows some promise, and slim chance of any harm.
During my practice years, I believed in discussing management options with the patient, but I also believed that they were paying me for my opinion, based on my education, training, experience and in the context of their particular situation. Usually, they would follow my recommendation, but if they didn’t, I respected their choice and worked with them the best I could.
Minutes into my morning, I see a new email from Sensible Medicine. Ah, always looking forward to a new one, often a first read. Two sips from a microwaved cup of coffee, and you destroy me. Floodgates before work. Damn you, beautiful guest writer
Will never forget the case shared with me by a colleague that was working for a VIP Wellness clinic about 25 years ago. This well to do patient went to them for Wellness care and when asked why was he there he replied “ because I enjoy smoking and want to live as long as possible to enjoy it longer “. CTL-ALT-DEL !!! Yes, patient centered care is different from guidelines derived care.
>>I’d been trained to inform, not direct. To offer options, not opinions. Shared decision-making, not paternalism; the new covenant between doctor and patient.
This is the heart of the essay: how much direction is appropriate for the patient in front of you.
I was explicitly taught in med school and residency to answer the question of "What would you recommend if I were your mother?" by deflecting it with "You're not my mother; you don't have the same beliefs and hopes she does, so the right answer for her is irrelevant for you." Oddly, the next step was not explicitly taught to me: find out what the patient's hopes and beliefs are and grapple with them or at least assist them in grappling. Fortunately, those are the most interesting things about other people to me; what do you believe that makes that decision make sense?
Shared decision making as the new ideal ignores the fact that a doctor cannot present facts unencumbered by their own beliefs, preferences, and hopes. We try to present facts only, but our own ideas creep in. Maybe shared decision making is better done with an AI than a human doctor?
Unrelated to the main points here, I have had several patients visit neurologists to consider lccanumab and so far not a one has thought it sounded like a good plan.
Wait a minute here. The presence of amyloid on PET scan does not always mean that the patient has Alzheimers. This should have also been conveyed to this patient and her family in their decision making process.
The patient made the right choice. Cochrane just published a study. They analyzed 17 studies covering over 20,000 patients. The monoclonal antibodies work to eliminate plague, but they have no clinically relevant effect on the dementia. Frankly, you can see that in the original studies if you will but look.
Well, the Cochrane study of 17 RCTs says, “clinically insignificant’.
The original RCT studies that were used to approve these drugs says that it slowed decline in 17%, caused 15% to have ‘brain bleeds’ (aka strokes), and caused 25% to have brain swelling.
17% it helps you a little bit. 40% chance it makes things worse.
And since this study was funded by a drug company probably overestimated efficacy and underreported dangers.
If you love the afflicted and want the best for them there is no way you’d go down this road.
I have seen the ones that were sold hyperbarics as an option, which has been proposed as a cure for everything but balancing your checkbook. Cash only and, $15,000 later, no improvement. When you’re falling off a cliff, you would hang on to a thorny branch covered in
Do the gene test, don’t do it, take OTC miracle nutraceuticals, go on keto diet. Lots of noise in the line. I tell my pts that my job is to keep them alive so they can benefit from what’s coming down the pipeline. Hope doesn’t come in a blister pack.
Beautifully written essay and so relevant to me as I drift toward 70 and watch my two siblings struggle with neurological decline from diseases with no cure. They both have elected NOT to become full time patients. Your thoughts have helped me better process their decisions and have already helped me define mine as I age along. I’m a retired surgeon-some things are best left alone, took a good while for me to embrace that concept.
You are an excellent writer, Dr. Sarai. My recommendation: pitch this to a publisher. Your gift for storytelling and your compassion as a healer will help countless others through some rough years.
Thoughtful and well written article. Thank you for not pushing endless procedures and drugs that possibly tack on extra time alive, while destroying quality of life. You knew what this woman wanted.
Dementia is a horror show. Anyone who says otherwise hasn’t witnessed its cruelty. We need to have MAID or “death with dignity” available to us should we become dementia patients and want that route. I know I do.
Beautiful
That’s a beautiful story. How remarkably human of you, as a doctor. I applaud that.
Brilliant article and excellent commentary. Teaching this should be mandatory in med school and training programs.
Perhaps you could research and recommend low-dose lithium orotate based on recent studies? Not yet proven, but shows some promise, and slim chance of any harm.
This is beautifully written. Always keep the patient’s story in mind. That is respect.
Curious if she was up to date on her Covid boosters…
During my practice years, I believed in discussing management options with the patient, but I also believed that they were paying me for my opinion, based on my education, training, experience and in the context of their particular situation. Usually, they would follow my recommendation, but if they didn’t, I respected their choice and worked with them the best I could.
Minutes into my morning, I see a new email from Sensible Medicine. Ah, always looking forward to a new one, often a first read. Two sips from a microwaved cup of coffee, and you destroy me. Floodgates before work. Damn you, beautiful guest writer
Will never forget the case shared with me by a colleague that was working for a VIP Wellness clinic about 25 years ago. This well to do patient went to them for Wellness care and when asked why was he there he replied “ because I enjoy smoking and want to live as long as possible to enjoy it longer “. CTL-ALT-DEL !!! Yes, patient centered care is different from guidelines derived care.
“ The patient died in electrolyte balance “
Beautifully written. Thank you for sharing your story.
>>I’d been trained to inform, not direct. To offer options, not opinions. Shared decision-making, not paternalism; the new covenant between doctor and patient.
This is the heart of the essay: how much direction is appropriate for the patient in front of you.
I was explicitly taught in med school and residency to answer the question of "What would you recommend if I were your mother?" by deflecting it with "You're not my mother; you don't have the same beliefs and hopes she does, so the right answer for her is irrelevant for you." Oddly, the next step was not explicitly taught to me: find out what the patient's hopes and beliefs are and grapple with them or at least assist them in grappling. Fortunately, those are the most interesting things about other people to me; what do you believe that makes that decision make sense?
Shared decision making as the new ideal ignores the fact that a doctor cannot present facts unencumbered by their own beliefs, preferences, and hopes. We try to present facts only, but our own ideas creep in. Maybe shared decision making is better done with an AI than a human doctor?
Well said Mary.
Unrelated to the main points here, I have had several patients visit neurologists to consider lccanumab and so far not a one has thought it sounded like a good plan.
Wait a minute here. The presence of amyloid on PET scan does not always mean that the patient has Alzheimers. This should have also been conveyed to this patient and her family in their decision making process.
The patient made the right choice. Cochrane just published a study. They analyzed 17 studies covering over 20,000 patients. The monoclonal antibodies work to eliminate plague, but they have no clinically relevant effect on the dementia. Frankly, you can see that in the original studies if you will but look.
Slowing the decline they say. The search continues
Well, the Cochrane study of 17 RCTs says, “clinically insignificant’.
The original RCT studies that were used to approve these drugs says that it slowed decline in 17%, caused 15% to have ‘brain bleeds’ (aka strokes), and caused 25% to have brain swelling.
17% it helps you a little bit. 40% chance it makes things worse.
And since this study was funded by a drug company probably overestimated efficacy and underreported dangers.
If you love the afflicted and want the best for them there is no way you’d go down this road.
I have seen the ones that were sold hyperbarics as an option, which has been proposed as a cure for everything but balancing your checkbook. Cash only and, $15,000 later, no improvement. When you’re falling off a cliff, you would hang on to a thorny branch covered in
Do the gene test, don’t do it, take OTC miracle nutraceuticals, go on keto diet. Lots of noise in the line. I tell my pts that my job is to keep them alive so they can benefit from what’s coming down the pipeline. Hope doesn’t come in a blister pack.
Beautifully written essay and so relevant to me as I drift toward 70 and watch my two siblings struggle with neurological decline from diseases with no cure. They both have elected NOT to become full time patients. Your thoughts have helped me better process their decisions and have already helped me define mine as I age along. I’m a retired surgeon-some things are best left alone, took a good while for me to embrace that concept.
Thank you!❤️
You are an excellent writer, Dr. Sarai. My recommendation: pitch this to a publisher. Your gift for storytelling and your compassion as a healer will help countless others through some rough years.
Thoughtful and well written article. Thank you for not pushing endless procedures and drugs that possibly tack on extra time alive, while destroying quality of life. You knew what this woman wanted.
Dementia is a horror show. Anyone who says otherwise hasn’t witnessed its cruelty. We need to have MAID or “death with dignity” available to us should we become dementia patients and want that route. I know I do.