Dr. Wentworth, I was expecting your Monday article to be good, but you have FAR exceeded expectations. Some observations, all pointing to why this article is so good:
First: re “value-based care,” I recently read the linked piece by Dr. Wachter about that very thing. I think he is a good man, trying to work in the system as it is, but of course the question is –is that a good thing to do—and, if not, what are the alternatives? (I have opinions on this, but as I’m going try to not go on for weeks here, I’ll just lay out the question—and you’ve ID’d a LOT of the problems in your bullet points.
I appreciate so much your concrete suggestions, and I’m going to give a little “patient view” on two listed below. (Just as background, both I and my spouse have gone through cancer. Not fun, but glad to report we’re still here—and very, very grateful to people like you who saw us through it. I am retired, but also worked in health care-related fields, so I have enough knowledge to be dangerous about these things!) So, with that, here goes:
>Fill out every survey. Be honest and include specific feedback. Be stingy with your stars. (I once organized a successful patient complaint campaign after a manager fired our parking valets and patients had to walk up a steep hill for their treatments.)
Here’s the problem I encounter: The issues we’ve faced that are most problematic are on the admin/systems end, not on the care received. Yet we have never, between us, received a survey that asks for input on those issues, only on how we thought the physician and front desk staff performed. While I scouted around and found an address to write to, I have no confidence that, if I spend the time, it won’t just go into the slush pile (this doesn’t mean I’m giving up, just that I feel I need to learn more to figure out how not to end up in the slush pile).
The thing is, to the vast AMC system, the issues we have encountered may feel like tiny details, while, for the patient, these are much bigger deals.
Here’s an example: My Reclast infusion had to be delayed because of dental work. The only person in the whole system who was charged with alerting me that if, the timeframe went over 30 days, I’d have to get a new set of bloodwork, was the MD. She didn’t happen to think of it, and my view is it shouldn’t be on her to do so. Rather, the AMC should, for goodness sake, have a system that spits out info and reminders on this to the patient portal. As it was, I didn’t find out until I arrived, the lab was backed up, and my infusion session was therefore 90 minutes longer than it should have been. (And here’s a former cancer patient “extra”: I hadn’t realized, as chemotherapy was so long ago, how distressing it would be to go to the infusion center, which also treats cancer patients. That extra 90 minutes revived some of the horrible earlier experience. This was all unnecessary, not the MD’s fault, not the nurse’s or staff’s fault, but rather the admin system’s fault.)
PS: And don’t even get me started on the ER. Here’s your money quote on that one: “What actually happens is a very complicated redistribution of wealth. The revenue generated from profitable departments (known as “The Three Billion Dollar Club”) subsidizes other departments like infectious disease and the ER that are consistently in the red. For example, many years ago I was told that the profit from ONE radiation treatment machine covered the year-end bonuses for every employee in the hospital system. And yet we couldn’t get funding for another cancer center social worker. But I digress…” And, believe me, you do NOT digress on that one. It’s the central problem.
>Don’t complain to your doctor. Doctors probably do not have the power to address your concerns about the lab, parking, nurses, waiting room, scheduling, someone’s attitude, etc. They do not manage the staff and likely agree with you.
Agree 100%. See above.
Bottom line, which you have outlined here so well: We need to change the system in which the health care providers work and in which patients receive care. Unfortunately, the financial incentives are perverse. The perennial question is how to make that change.
Our health care system is anything but caring. Decisions are financially driven and made in board rooms for profit and stock holders. NO ONE should come between the Doctor and their patients.
I have tried to remain transparent about my journey. I wrote this in 2019 several months after completing my initial treatments realizing there was more to the story. I share it in support of you or someone you may know. We all have something. Love ❤️
As a cancer survivor I see so many commonalities in our special world. We have awakened to a new life. Many of us are striving to be our best self. Many are now, after enduring treatment being their best self while enduring the side effects of treatments. Cancer is scary, the side effects are what we live with. At some point each of us must make a mindful choice to endure treatments and knowing how these will change our lives forever. We develop PTSD, we continue to fight, fighting the cancer, side effects and the consequences and costs of life long medical care. It’s not a journey we chose but we do choose to live. It’s so often we hear, you look great. Only at that moment do we realize how unimportant how we look is. We choose to live. We choose to continue to better ourselves. We choose to live each day and moment. I never understood, until I did.
Cancer survivors and those who succumbed to this terrible disease( I love you Dad) YOU ARE MY INSPIRATION. YOU are an amazing person and I understand what you have shown and shared. #cancersucks.
You are absolutely spot on. When the CARES act passed I knew my days of really providing service for people with addictions were numbered - because now there was $ for treating the disease. How right I was for many of the reasons you listed. I’ve been fortunate in that I was at the end of my career due to health issues, which ironically saved me another 5-10 years of what would have been torturous to me. Addicts are herded in for their MAT and almost no other resources or therapy, a revolving door of detox and relapse. Because “the evidence” says so. I could also go on but I LOVE YOUR SOLUTIONS.
YES! Fill out surveys. Honestly. And speak to administrators with gripes and be constructive. It DOES go a long way.
Thank you as always, for your words. I do all I can today to help others pro bono, and now that the burden of admin has been removed, it’s the best service of my life.
One of my managers once said things changed when people with business degrees replaced physician leadership. I’m thankful that my dad had a good oncologist. BTW, the word quality still makes me want to twitch a little and I’ve not worked in the healthcare system in 10 years.
I totally get it. I'll try to keep my use of "quality" to a minimum. To me, it has become synonymous with "here is some more computer work for you to do!" 🤪
My wife is a heme-onc NP and for me as a cancer patient it can be pretty brutal to see both sides of the coin. I personally experience the need for patient focused care and bristle at all the ways in which I/people can feel like hospital products on an assembly line— but when she gets home after 14 hours of a 12 hour shift and explains just how relentless her day was— I begin to understand the ways in which both patient and “provider” are whittled down against each other by systems for the sake of profit.
I really do appreciate reading your posts every week. It’s a nice glimpse into the mind and heart of an oncologist when so often it can feel like being a cancer patient is to be an especially demanding statistic. An oncologist writing and thinking and understanding these issues from all perspectives is refreshing. I’m sure you’re not the only one but I bet your survey reviews are pretty good!
Thank you so much for your kind words, Elliott. Most of what I learned about survivorship was from a heme-onc NP. I really enjoy your posts as well. We don't see too many 25 year survivors so I learn from you!
This might be the best thing I've ever read really breaking things down. As a cancer patient (brain), I've been awake of a lot of this (we patients do talk to each other and moan about it lol), but this really puts it all together with a little further detail. I personally feel the trends in the healthcare "industry" are a move towards more two-dimensional care-- sure most patients may live longer, but not necessarily live better. And then oddball cases just get left out. I read a statistic a coupe years ago that oncologists both have the highest rate of job satisfaction and the highest rate of death by suicide. I don't mention that to freak anyone out, but that says a lot and it really helped me to not see doctors as adversaries, but partners. We can, and should, be in this together. Thank you for writing this.
You are spot on. I receive care from the Cleveland Clinic, one of the biggest of the behemoth hospital systems. And all but my oncologist have the laptop typing away. I once asked a doctor to stop typing so he could listen. Sooner or later everyone will discover how troubled our health care business/system is. Thank you for writing this.
Dr. Wentworth, I was expecting your Monday article to be good, but you have FAR exceeded expectations. Some observations, all pointing to why this article is so good:
First: re “value-based care,” I recently read the linked piece by Dr. Wachter about that very thing. I think he is a good man, trying to work in the system as it is, but of course the question is –is that a good thing to do—and, if not, what are the alternatives? (I have opinions on this, but as I’m going try to not go on for weeks here, I’ll just lay out the question—and you’ve ID’d a LOT of the problems in your bullet points.
https://academic.oup.com/healthaffairsscholar/article/1/1/qxad002/7203669
I appreciate so much your concrete suggestions, and I’m going to give a little “patient view” on two listed below. (Just as background, both I and my spouse have gone through cancer. Not fun, but glad to report we’re still here—and very, very grateful to people like you who saw us through it. I am retired, but also worked in health care-related fields, so I have enough knowledge to be dangerous about these things!) So, with that, here goes:
>Fill out every survey. Be honest and include specific feedback. Be stingy with your stars. (I once organized a successful patient complaint campaign after a manager fired our parking valets and patients had to walk up a steep hill for their treatments.)
Here’s the problem I encounter: The issues we’ve faced that are most problematic are on the admin/systems end, not on the care received. Yet we have never, between us, received a survey that asks for input on those issues, only on how we thought the physician and front desk staff performed. While I scouted around and found an address to write to, I have no confidence that, if I spend the time, it won’t just go into the slush pile (this doesn’t mean I’m giving up, just that I feel I need to learn more to figure out how not to end up in the slush pile).
The thing is, to the vast AMC system, the issues we have encountered may feel like tiny details, while, for the patient, these are much bigger deals.
Here’s an example: My Reclast infusion had to be delayed because of dental work. The only person in the whole system who was charged with alerting me that if, the timeframe went over 30 days, I’d have to get a new set of bloodwork, was the MD. She didn’t happen to think of it, and my view is it shouldn’t be on her to do so. Rather, the AMC should, for goodness sake, have a system that spits out info and reminders on this to the patient portal. As it was, I didn’t find out until I arrived, the lab was backed up, and my infusion session was therefore 90 minutes longer than it should have been. (And here’s a former cancer patient “extra”: I hadn’t realized, as chemotherapy was so long ago, how distressing it would be to go to the infusion center, which also treats cancer patients. That extra 90 minutes revived some of the horrible earlier experience. This was all unnecessary, not the MD’s fault, not the nurse’s or staff’s fault, but rather the admin system’s fault.)
PS: And don’t even get me started on the ER. Here’s your money quote on that one: “What actually happens is a very complicated redistribution of wealth. The revenue generated from profitable departments (known as “The Three Billion Dollar Club”) subsidizes other departments like infectious disease and the ER that are consistently in the red. For example, many years ago I was told that the profit from ONE radiation treatment machine covered the year-end bonuses for every employee in the hospital system. And yet we couldn’t get funding for another cancer center social worker. But I digress…” And, believe me, you do NOT digress on that one. It’s the central problem.
>Don’t complain to your doctor. Doctors probably do not have the power to address your concerns about the lab, parking, nurses, waiting room, scheduling, someone’s attitude, etc. They do not manage the staff and likely agree with you.
Agree 100%. See above.
Bottom line, which you have outlined here so well: We need to change the system in which the health care providers work and in which patients receive care. Unfortunately, the financial incentives are perverse. The perennial question is how to make that change.
Our health care system is anything but caring. Decisions are financially driven and made in board rooms for profit and stock holders. NO ONE should come between the Doctor and their patients.
I have tried to remain transparent about my journey. I wrote this in 2019 several months after completing my initial treatments realizing there was more to the story. I share it in support of you or someone you may know. We all have something. Love ❤️
As a cancer survivor I see so many commonalities in our special world. We have awakened to a new life. Many of us are striving to be our best self. Many are now, after enduring treatment being their best self while enduring the side effects of treatments. Cancer is scary, the side effects are what we live with. At some point each of us must make a mindful choice to endure treatments and knowing how these will change our lives forever. We develop PTSD, we continue to fight, fighting the cancer, side effects and the consequences and costs of life long medical care. It’s not a journey we chose but we do choose to live. It’s so often we hear, you look great. Only at that moment do we realize how unimportant how we look is. We choose to live. We choose to continue to better ourselves. We choose to live each day and moment. I never understood, until I did.
Cancer survivors and those who succumbed to this terrible disease( I love you Dad) YOU ARE MY INSPIRATION. YOU are an amazing person and I understand what you have shown and shared. #cancersucks.
You always say it so well, Mark, and are an inspiration to others. Thank you for being here.
Predatory monopoly capitalism. . .it will destroy everything it hasn't already. . .
You are absolutely spot on. When the CARES act passed I knew my days of really providing service for people with addictions were numbered - because now there was $ for treating the disease. How right I was for many of the reasons you listed. I’ve been fortunate in that I was at the end of my career due to health issues, which ironically saved me another 5-10 years of what would have been torturous to me. Addicts are herded in for their MAT and almost no other resources or therapy, a revolving door of detox and relapse. Because “the evidence” says so. I could also go on but I LOVE YOUR SOLUTIONS.
YES! Fill out surveys. Honestly. And speak to administrators with gripes and be constructive. It DOES go a long way.
Thank you as always, for your words. I do all I can today to help others pro bono, and now that the burden of admin has been removed, it’s the best service of my life.
One of my managers once said things changed when people with business degrees replaced physician leadership. I’m thankful that my dad had a good oncologist. BTW, the word quality still makes me want to twitch a little and I’ve not worked in the healthcare system in 10 years.
I'm so glad that your dad received good care.
I totally get it. I'll try to keep my use of "quality" to a minimum. To me, it has become synonymous with "here is some more computer work for you to do!" 🤪
My wife is a heme-onc NP and for me as a cancer patient it can be pretty brutal to see both sides of the coin. I personally experience the need for patient focused care and bristle at all the ways in which I/people can feel like hospital products on an assembly line— but when she gets home after 14 hours of a 12 hour shift and explains just how relentless her day was— I begin to understand the ways in which both patient and “provider” are whittled down against each other by systems for the sake of profit.
I really do appreciate reading your posts every week. It’s a nice glimpse into the mind and heart of an oncologist when so often it can feel like being a cancer patient is to be an especially demanding statistic. An oncologist writing and thinking and understanding these issues from all perspectives is refreshing. I’m sure you’re not the only one but I bet your survey reviews are pretty good!
Thank you so much for your kind words, Elliott. Most of what I learned about survivorship was from a heme-onc NP. I really enjoy your posts as well. We don't see too many 25 year survivors so I learn from you!
This might be the best thing I've ever read really breaking things down. As a cancer patient (brain), I've been awake of a lot of this (we patients do talk to each other and moan about it lol), but this really puts it all together with a little further detail. I personally feel the trends in the healthcare "industry" are a move towards more two-dimensional care-- sure most patients may live longer, but not necessarily live better. And then oddball cases just get left out. I read a statistic a coupe years ago that oncologists both have the highest rate of job satisfaction and the highest rate of death by suicide. I don't mention that to freak anyone out, but that says a lot and it really helped me to not see doctors as adversaries, but partners. We can, and should, be in this together. Thank you for writing this.
You are spot on. I receive care from the Cleveland Clinic, one of the biggest of the behemoth hospital systems. And all but my oncologist have the laptop typing away. I once asked a doctor to stop typing so he could listen. Sooner or later everyone will discover how troubled our health care business/system is. Thank you for writing this.