Vivek, when bone marrow transplants work, they seem to worm really well. I had a student who had ALL and CML and he received a bone marrow transplant and not only survived but thrived. He was one of four people on that floor, all of whom recovered and survived. So this procedure, with so many risks, can give very sick people a new lease on life. Maybe better patient screening is needed?
This is what I love most about your posts — the pure humanity. I have many physician family members and friends. I love and respect them all but learned the most from my brother who was an early adopter of evidence based medicine. He would have been appalled by what’s become of his beloved profession. Hubris has long been part of medicine and part of the promise of EMB was the knowledge to temper it. Sadly, the past three years have raised it to levels I never would have thought possible. Thankfully, I learned enough from the docs in my circle to be able to ask good enough questions before agreeing to any treatment or procedure. I’ve rejected plenty as a result. I quickly move on from docs who don’t like the questions. I worry most about people who don’t know what questions to ask or are otherwise incapable of doing so.
This is what I love most about your posts — the pure humanity. I have many physician family members and friends. I love and respect them all but learned the most from my brother who was an early adopter of evidence based medicine. He would have been appalled by what’s become of his beloved profession. Hubris has long been part of medicine and part of the promise of EBM was the knowledge to temper it. Sadly, the past three years have raised it to levels I never would have thought possible. Thankfully, I learned enough from the docs in my circle to be able to ask good enough questions before agreeing to any treatment or procedure. I’ve rejected plenty as a result. I quickly move on from docs who don’t like the questions. I worry most about people who don’t know what questions to ask or are otherwise incapable of doing so.
I have essential thrombocythemia, which could progress to AML or myelofibrosis. I am 80 years old, so I would never choose a marrow transplant, but if I were 50, I may, given that about half the patients survive and are cured, although they still face the risk of graft vs. host. I would not decline to get it based on any cost benefit analysis.
Whether interventions such as BMT in a case like this are "worth it" must also involve consideration of costs - cost to the patient, the family, the providers, their employers, and "the system". It is the availability of payments (for which we use the special word "reimbursement") that makes these interventions possible -and which also minimizes the need for reflection about appropriateness.
My father was one of the first interventional cardiologists. When he was elderly and developed a reduced ejection fraction, naturally an AICD was recommended and accepted. He did well for a few years, until he experienced an inappropriate activation. Frightened and in pain (from the shocks), he cried out to say goodbye to my mother. The unprompted and unnecessary shocks transformed his life, and not in a good way.
This procedure was undertaken almost automatically, seemingly without a second thought. IF he or his family had been asked to pay the cost of the device and the procedures around implantation and testing, of course it never would have happened.
I just reviewed the FY2024 letter from the C suite about what we must do now. We are no different from anywhere else: More automation, more AI, in order to admit more patients and shorten their length of stay.
When I started in 1982, hospitals ran at 75% capacity, always had enough nurses, never had to turn a patient away and never made them spend a night, never mind two or three, afraid, on an uncomfortable stretcher in the ER. Patients always stayed until they were better. With all that, those hospitals made a nice profit (sorry, I meant "margin") and were fairly decent places to work.
Whether a BMT, or an AICD, or any other completely unaffordable (but for "insurance") intervention is "worth it", we need to recapture our sense of proportion and appropriateness. Our systems at 105% capacity, running nurses ragged until they quit, and one extra day LOS away from insolvency are on the wrong path.
Figuring out what is "worth it" is a necessary step back onto the correct road.
This article resonates. 38 years ago my husband underwent bone marrow transplantation. The procedure was found to have failed fewer than three weeks after his release from the hospital. He died four months later, following a relapse of his acute leukemia. I believe the right choice - to do the transplant - was made, and I would not question it even now. I cannot answer as to whether it was the best, data-driven, rational choice for his care. But he was dying. It was a one in a million chance to save him.
Another example of the lesson, "Few things in medicine are a sure thing." So many variables must be weighed: by the doctors, by the patient, by the family. In the end, it must be the patient (or designated spokesperson) who makes the decision, based on all the available information, and knowing all the questions and uncertainties.
Powerful piece, Dr. Prasad. And as I'm sure you know...sometimes telling analogous stories such as this one helps people see their incongruous thinking about something else.
This strikes a chord with me as well. As a hospice Dr., there is always the doubt and fear that the medications I am using will, in addition to relieving suffering, hasten the patient's death. Studies suggest that patients in hospice care actually live about two months longer than those with similar diagnoses who do not receive hospice care. Those studies however are cold comfort when the patient passes away shortly after I have increased their morphine dose. The introspection, the doubt, and the fear however, are what make you a great physician rather than a blind follower of the medicine cookbook.
I'm glad to read that doctors too have doubts about what they recommend.
My father passed away just a couple months ago, on the day of my parents' 42nd anniversary. He was admitted for a high fever and overall weakness (he was 84 years old). He had a salmonella infection in his gut and had also developed pneumonia. During his stay he also developed an arrhythmia. All this on top of the dementia he was suffering from.
His pneumonia got worse despite the efforts of the staff and physicians. They drained 2 liters of fluid from his lungs. He was in pain. The attending physician recommended he go to comfort care. We agreed to it and said our goodbyes to him over the next two days until he finally passed away.
I still worry that maybe we jumped to comfort care too soon. Maybe there was still something else we could've done for him. He was absolutely clear he did not want to be intubated or kept alive mechanically, and there is no doubt in my mind that his dementia would only get worse over time which is something he was emphatic about never wanting to suffer through.
Yet I still wake up some nights thinking I had let him down and let him go too soon, hoping he could forgive me if that were true.
It's comforting to know I'm not the only one to suffer this doubt.
We all go through that wondering when any loved one is leaving this world. Did we hasten death? Was there something more we coulda done? I think it’s a reflection of our love. For me it was also some selfishness on my part bc I didn’t want my dad to go. Not at that time, anyway. My dad, however, said, “I’m done here...I just want to go home.” And I honored that. OnC docs suggested radiation and a few other things but I stopped it and got him outta there. I asked the hospice nurse to maximize his pain meds (morphine) and still had the erroneous thought that I hastened his death. I specialized in chronic pain management and knew better, yet that’s where grief took me. I suspect today that the questions we pose to ourselves are reflections of love and only wanting what’s best.
I've learned how much I hate death from being with my parents at their deaths. Sending you my condolences. You really loved him, and he knows it.
I find I miss all my parents (birth parents, step parents, In-laws) more as time goes by, not less. I pray for their souls and tell them I love and miss them and it helps with grief that I will always have.
I wish there was a "hug" emoji, because I would have sent it to you. From the information you shared, IMHO, you made the "right" decision. And I would argue that it was more difficult to make that decision than if you would have allowed the medical team to keep going.
Rather than act like oracles, all health care professionals should share both their doubts and their hopes about treatment options with their patients. If the patient knows the doctor is entertaining doubts they may make a more thoughtful decision themselves about their treatment. Either way the health care provider can know their conscience is clear that they haven’t steered the patient into a preferred treatment
My last PCP before he retired was about my same age. When discussing health concerns and treatments with him, I frequently asked "If you had this diagnosis, what treatments would you choose?" and then opted for the same thing.
While I'm in decent health, I'm aware EVERYONE ends up room temperature eventually, and the best-lived life is likely not the one that maximizes length without regard to quality.
I work as a nurse at BMT and that's exactly how I feel....the questions if we made the right decision. If we really wanted the best for each patient or if the chance to try new techniques, such as Car-T for MM, pushed our recommendation.
Uncertainty. Complexity. We humans don't like it. We want simple and certain, especially when our lives and livelihood depend on it. It's the brave professional of any stripe who can tolerate the ambiguity and still function. Well done Vinay! 👏
There are more things in medicine that we don’t know, than we do. That’s reality. There is no shame in not knowing, if something is simply unknown.
The travesty is pretending to know, when we don’t. That’s where I perceive guideline writers to be, at least in cardiology, far more often than they should be, and with regrettably few exceptions in recent years.
Thank you for writing this. Our own family experience with this has been somewhat isolating after losing my husband to an onslaught of side effects not just from SCT, but from previous treatments, both chemical and radiation. We were willing participants, at least being given the feeling that we were doing something vs doing nothing, but in hindsight it was all a big mistake. For us. The suffering was enormous. Although the transplant teams were stellar whilst in the system, the way in which we were cast adrift to face the terrible ramifications, was a start to my awakening about medicine in general. COVID nightmare has me fully alerted. Anyway, he was a scientist and said he wanted to be a data point if nothing else.....he was so much more than that, but, but, but. Thanks for letting me write this for the first time.
Another personal account. Ten years ago my 83-year old father was diagnosed with AML. The prognosis for treatment of any kind was not encouraging. He opted to forgo treatment and died a month later. We continue to see it as the right decision.
Fast forward to late 2020. My husband was diagnosed with high risk myeloma and a second unrelated cancer was found which required a year of treatment ahead of addressing his myeloma (invasive squamous cell carcinoma of the lacrimal duct). His induction yielded a PR and a syngeneic transplant further reduced his cancer burden but still only a partial remission. Day 185 post transplant and he’s plateaued. We’re trying another med and are working to secure a spot on the CarT list.
I share this story as it illustrates the quandary you’ve described. We’ve not responded in the ways our hematologist had hoped for. The transplant was hard and chemo cocktail is laden with side effects. However, we are grateful for our time together and there has been much joy and many blessing in our cancer journey. Treatment, including transplant, isn’t a choice we regret.
Vivek, when bone marrow transplants work, they seem to worm really well. I had a student who had ALL and CML and he received a bone marrow transplant and not only survived but thrived. He was one of four people on that floor, all of whom recovered and survived. So this procedure, with so many risks, can give very sick people a new lease on life. Maybe better patient screening is needed?
This is what I love most about your posts — the pure humanity. I have many physician family members and friends. I love and respect them all but learned the most from my brother who was an early adopter of evidence based medicine. He would have been appalled by what’s become of his beloved profession. Hubris has long been part of medicine and part of the promise of EMB was the knowledge to temper it. Sadly, the past three years have raised it to levels I never would have thought possible. Thankfully, I learned enough from the docs in my circle to be able to ask good enough questions before agreeing to any treatment or procedure. I’ve rejected plenty as a result. I quickly move on from docs who don’t like the questions. I worry most about people who don’t know what questions to ask or are otherwise incapable of doing so.
This is what I love most about your posts — the pure humanity. I have many physician family members and friends. I love and respect them all but learned the most from my brother who was an early adopter of evidence based medicine. He would have been appalled by what’s become of his beloved profession. Hubris has long been part of medicine and part of the promise of EBM was the knowledge to temper it. Sadly, the past three years have raised it to levels I never would have thought possible. Thankfully, I learned enough from the docs in my circle to be able to ask good enough questions before agreeing to any treatment or procedure. I’ve rejected plenty as a result. I quickly move on from docs who don’t like the questions. I worry most about people who don’t know what questions to ask or are otherwise incapable of doing so.
I have essential thrombocythemia, which could progress to AML or myelofibrosis. I am 80 years old, so I would never choose a marrow transplant, but if I were 50, I may, given that about half the patients survive and are cured, although they still face the risk of graft vs. host. I would not decline to get it based on any cost benefit analysis.
Whether interventions such as BMT in a case like this are "worth it" must also involve consideration of costs - cost to the patient, the family, the providers, their employers, and "the system". It is the availability of payments (for which we use the special word "reimbursement") that makes these interventions possible -and which also minimizes the need for reflection about appropriateness.
My father was one of the first interventional cardiologists. When he was elderly and developed a reduced ejection fraction, naturally an AICD was recommended and accepted. He did well for a few years, until he experienced an inappropriate activation. Frightened and in pain (from the shocks), he cried out to say goodbye to my mother. The unprompted and unnecessary shocks transformed his life, and not in a good way.
This procedure was undertaken almost automatically, seemingly without a second thought. IF he or his family had been asked to pay the cost of the device and the procedures around implantation and testing, of course it never would have happened.
I just reviewed the FY2024 letter from the C suite about what we must do now. We are no different from anywhere else: More automation, more AI, in order to admit more patients and shorten their length of stay.
When I started in 1982, hospitals ran at 75% capacity, always had enough nurses, never had to turn a patient away and never made them spend a night, never mind two or three, afraid, on an uncomfortable stretcher in the ER. Patients always stayed until they were better. With all that, those hospitals made a nice profit (sorry, I meant "margin") and were fairly decent places to work.
Whether a BMT, or an AICD, or any other completely unaffordable (but for "insurance") intervention is "worth it", we need to recapture our sense of proportion and appropriateness. Our systems at 105% capacity, running nurses ragged until they quit, and one extra day LOS away from insolvency are on the wrong path.
Figuring out what is "worth it" is a necessary step back onto the correct road.
This article resonates. 38 years ago my husband underwent bone marrow transplantation. The procedure was found to have failed fewer than three weeks after his release from the hospital. He died four months later, following a relapse of his acute leukemia. I believe the right choice - to do the transplant - was made, and I would not question it even now. I cannot answer as to whether it was the best, data-driven, rational choice for his care. But he was dying. It was a one in a million chance to save him.
Another example of the lesson, "Few things in medicine are a sure thing." So many variables must be weighed: by the doctors, by the patient, by the family. In the end, it must be the patient (or designated spokesperson) who makes the decision, based on all the available information, and knowing all the questions and uncertainties.
Powerful piece, Dr. Prasad. And as I'm sure you know...sometimes telling analogous stories such as this one helps people see their incongruous thinking about something else.
This strikes a chord with me as well. As a hospice Dr., there is always the doubt and fear that the medications I am using will, in addition to relieving suffering, hasten the patient's death. Studies suggest that patients in hospice care actually live about two months longer than those with similar diagnoses who do not receive hospice care. Those studies however are cold comfort when the patient passes away shortly after I have increased their morphine dose. The introspection, the doubt, and the fear however, are what make you a great physician rather than a blind follower of the medicine cookbook.
I'm glad to read that doctors too have doubts about what they recommend.
My father passed away just a couple months ago, on the day of my parents' 42nd anniversary. He was admitted for a high fever and overall weakness (he was 84 years old). He had a salmonella infection in his gut and had also developed pneumonia. During his stay he also developed an arrhythmia. All this on top of the dementia he was suffering from.
His pneumonia got worse despite the efforts of the staff and physicians. They drained 2 liters of fluid from his lungs. He was in pain. The attending physician recommended he go to comfort care. We agreed to it and said our goodbyes to him over the next two days until he finally passed away.
I still worry that maybe we jumped to comfort care too soon. Maybe there was still something else we could've done for him. He was absolutely clear he did not want to be intubated or kept alive mechanically, and there is no doubt in my mind that his dementia would only get worse over time which is something he was emphatic about never wanting to suffer through.
Yet I still wake up some nights thinking I had let him down and let him go too soon, hoping he could forgive me if that were true.
It's comforting to know I'm not the only one to suffer this doubt.
I still miss him.
We all go through that wondering when any loved one is leaving this world. Did we hasten death? Was there something more we coulda done? I think it’s a reflection of our love. For me it was also some selfishness on my part bc I didn’t want my dad to go. Not at that time, anyway. My dad, however, said, “I’m done here...I just want to go home.” And I honored that. OnC docs suggested radiation and a few other things but I stopped it and got him outta there. I asked the hospice nurse to maximize his pain meds (morphine) and still had the erroneous thought that I hastened his death. I specialized in chronic pain management and knew better, yet that’s where grief took me. I suspect today that the questions we pose to ourselves are reflections of love and only wanting what’s best.
I've learned how much I hate death from being with my parents at their deaths. Sending you my condolences. You really loved him, and he knows it.
I find I miss all my parents (birth parents, step parents, In-laws) more as time goes by, not less. I pray for their souls and tell them I love and miss them and it helps with grief that I will always have.
I wish there was a "hug" emoji, because I would have sent it to you. From the information you shared, IMHO, you made the "right" decision. And I would argue that it was more difficult to make that decision than if you would have allowed the medical team to keep going.
Rather than act like oracles, all health care professionals should share both their doubts and their hopes about treatment options with their patients. If the patient knows the doctor is entertaining doubts they may make a more thoughtful decision themselves about their treatment. Either way the health care provider can know their conscience is clear that they haven’t steered the patient into a preferred treatment
My last PCP before he retired was about my same age. When discussing health concerns and treatments with him, I frequently asked "If you had this diagnosis, what treatments would you choose?" and then opted for the same thing.
While I'm in decent health, I'm aware EVERYONE ends up room temperature eventually, and the best-lived life is likely not the one that maximizes length without regard to quality.
I work as a nurse at BMT and that's exactly how I feel....the questions if we made the right decision. If we really wanted the best for each patient or if the chance to try new techniques, such as Car-T for MM, pushed our recommendation.
Uncertainty. Complexity. We humans don't like it. We want simple and certain, especially when our lives and livelihood depend on it. It's the brave professional of any stripe who can tolerate the ambiguity and still function. Well done Vinay! 👏
Such an important story.
There are more things in medicine that we don’t know, than we do. That’s reality. There is no shame in not knowing, if something is simply unknown.
The travesty is pretending to know, when we don’t. That’s where I perceive guideline writers to be, at least in cardiology, far more often than they should be, and with regrettably few exceptions in recent years.
Thank you for writing this. Our own family experience with this has been somewhat isolating after losing my husband to an onslaught of side effects not just from SCT, but from previous treatments, both chemical and radiation. We were willing participants, at least being given the feeling that we were doing something vs doing nothing, but in hindsight it was all a big mistake. For us. The suffering was enormous. Although the transplant teams were stellar whilst in the system, the way in which we were cast adrift to face the terrible ramifications, was a start to my awakening about medicine in general. COVID nightmare has me fully alerted. Anyway, he was a scientist and said he wanted to be a data point if nothing else.....he was so much more than that, but, but, but. Thanks for letting me write this for the first time.
Another personal account. Ten years ago my 83-year old father was diagnosed with AML. The prognosis for treatment of any kind was not encouraging. He opted to forgo treatment and died a month later. We continue to see it as the right decision.
Fast forward to late 2020. My husband was diagnosed with high risk myeloma and a second unrelated cancer was found which required a year of treatment ahead of addressing his myeloma (invasive squamous cell carcinoma of the lacrimal duct). His induction yielded a PR and a syngeneic transplant further reduced his cancer burden but still only a partial remission. Day 185 post transplant and he’s plateaued. We’re trying another med and are working to secure a spot on the CarT list.
I share this story as it illustrates the quandary you’ve described. We’ve not responded in the ways our hematologist had hoped for. The transplant was hard and chemo cocktail is laden with side effects. However, we are grateful for our time together and there has been much joy and many blessing in our cancer journey. Treatment, including transplant, isn’t a choice we regret.