We no longer conceal bad diagnoses from patients; we consider this unethical. It is time that we consider it unethical to conceal that we have nothing to offer beyond palliation.
The thorny case that comes up in the addiction world is the level of care discussion. It is common enough that a patient is not doing well and an outpatient treatment is unlikely to help, but the patient refuses to detox in hospital or go to rehab. Often times, the options they need aren’t available as well. So then, the question is, should we offer them treatment that hasn’t helped.
In the opioid world, we can do a lot in terms of harm reduction, so the answer is almost always yes. But for a recent case of a patient with severe alcohol use, advanced liver disease, kidney disease, and other problems, offering him naltrexone in an outpatient clinic would have been irresponsible in my view.
As an internist with experience in palliative care, I do not agree with saying, “There is nothing more we can do.” This is a form of communication that is discouraged in the field, where good communication is one of the most important aspects of care.
Just as we avoid using medical jargon with patients in order to communicate more effectively, we must also be careful to communicate clearly and effectively in palliative care.
Of course, we should never lie — that should be a principle for life. But telling the patient or family, “We will do everything within our power to ensure that the care we provide — by doctors, nurses, and healthcare assistants — is as appropriate and clinically suitable to the situation as possible, always keeping in mind the greatest comfort we can offer,” is always truthful and fair. “Doing things” is not limited to diagnostic and therapeutic interventions; it includes everything from the smile of a healthcare assistant or nurse to the doctor’s communication with the patient and family.
Dr. Cifu this podcast at this time couldn't be more poignant for me. I'm 65 and am an RN who actually self diagnosed an Avulsion of my right hamstrings. Wasn't that I even knew the term but as my symptoms began including numbers/tingling, discomfort standing or sitting for any length of time I researched and found I had textbook signs. My PCP is thoughtful and caring. He listens and considers everything going on with me. (I often say I'll pay the copay twice for being a therapist for just listening to me; and I can talk!) February I had the MRI which confirmed my suspicion and with a 13 cm retraction! To the point you made on this Fridays reflection; I've seen 5 or 6 doctors. Each requires endless forms, online consents, insurance info, and imaging studies. At the appointment- it's the technician, then the NP or PA and then the doctor comes in to say he/she only does knees or shoulders or the back. Did anyone take the time to read any of it?? I still have no idea about something as basic as my activity level, doing PT, exercising, or working- not to mention info on surgical options and planning for what I've read is an extensive recovery process.
I thought to myself- I can't be the only person in NYC with a hamstrings injury. Especially considering anything soccer is everywhere. Thank you for so much of what you and some of your colleagues bring to us.
The mind including the unconscious mind as a tremendous amount of control over our bodies as I've learned from being quadriplegic for over 20 years so I would suggest never telling someone there position is hopeless. On the other hand all too often I have seen doctors performed tests and surgery going neither would affect the patient's outcome. That to is immoral and in some cases fraudulent. I remember years ago reading an interview with a famous urologist leaves even doing futile procedures is forwarded for the patient's mental well-being. I disagree. Futility should limit what we do
You can get rich lying to people who want to be lied to. You can make a living telling the truth to people who want the truth. You'll go broke telling the truth to people who want to be lied to.
Tell the truth. Your patient panel will soon consist of people who want to hear the truth.
I disagree that we don't conceal bad diagnoses from patients. While the evidence base (unfortunately, not often randomized trials) shows considerable variation in prognosis communication, many studies have found that physicians communicate prognosis in ways that are vague, non-quantitative, or difficult for patients to interpret (for example, relying on median survival, which many patients misunderstand). As a result, many patients leave believing their cancer is curable or without any meaningful understanding of how long people in similar situations typically live.
Technically, that may not meet a legal definition of "concealment." Functionally, however, it often has the same effect as patients fail to understand the seriousness of their illness. When clinicians consistently communicate in ways that do not produce comprehension, it is difficult to argue that this is simply accidental. Avoiding clear, quantitative discussions may reduce the discomfort of delivering devastating news, but it also deprives patients of the understanding they need to make informed decisions.
One of the few randomized trials relevant to this question was the landmark study of early palliative care in patients with incurable metastatic non-small cell lung cancer. Compared with standard oncology care alone, patients receiving early palliative care had a substantially better understanding of their prognosis:
Outcome Early palliative care | Standard care
Accurate understanding of prognosis over time | **82.5%** | **59.6%**
Believed cancer was curable at 12 weeks | **22.2%** | **39.5%**
Believed cancer was curable at 18 weeks | **17.8%** | **36.1%**
When trad med has nothing more to offer, that is when patients turn to alternative med. Some actually find relief there. Whether it is placebo effect or real can be hard to determine but often it is real. Not so much for true life threatening disease like cancer or major organ heart failure, more often for chronic nagging issues such as pain or endocrine issues. Others are simply throwing their money down a rat hole.
That said, I think trad Drs would do well to know of a Naturopath or two that they can send their "I have nothing left to offer" patients to -- with of course a hearty dose of "there is very little solid evidence that this will help, but some have found relief there.
BTH, I am firmly in the trad med camp & personally have never gone to a Naturopath --- yet!
2. Nothing more that science has shown to be of benefit?
3. Nothing more that I am aware of to even know to consider it?
#3 is obviously the one that I imagine all of us stay up to date in order to try to avoid. Don’t condemn our patients by our own ignorance.
But #1 vs #2 is still a quandary…and one that Sensible Med helps tackle.
In my practice (general cards), severe TR and RHF is one such quagmire. Sure, we “can” offer TEER or THV, but should we? As Dr. JMM has nicely shown, trilluminate and triscend 2 are dog’s breakfasts.
When there is “tension” (to borrow from JMM) btw “can” vs “should”, at what point do you actually reach “nothing more”?
My 89 yo mother could be the female version of TR - she should have had knee replacements long ago but chose not to , she should have had a cochlear implant long ago but chose not to, now she is living with the consequences of her choices . Her genetics favor many more years of life with her chronic pain and disabilities. Fortunately , our family is lucky enough to have the ability to attend a Direct Pay Primary Care clinic for a flat monthly fee and her FM doc is readily available , sees her frequently , and does no harm , emphasizes with her situation , avoids recommending fruitless and dangerous interventions. She feels cared for despite that fact that there is no real cure for her problems. He is wise enough to schedule her for regular visits even when there is no real acute problem - leading to less acute problems . She has only been in the ED twice in the past 3 years - in contrast to her assisted living friends who are in and out of the ER, face numerous long waits and obstacles to seeing maybe a ARNP when there is an acute problem at the more traditional clinics and are always going for more tests and procedures in the last months of life. My mother has pointed out that all her friends who have passed seem to only go on hospice in the last few days of life- she has declared that she wants to enroll as soon as she is eligible when the time comes to " get the most bang for her buck" . We laugh about this . She can't hear , but she is an astute observer .
I have a practice that I use with every patient and I teach it to my trainees. “Every patient should leave each visit feeling better than when she came in.”
This patient? “Well, we’ve done a lot. You’ve done well for what you have and you and I will continue to work with the tools we both have. When do you want to come back?” If the answer is uncertain. “You got any problem you have my cellphone. I’m there for anything.”
As primary care physicians our most powerful therapeutic tools are listening and empathizing. We can always and should always provide partnership and comfort. That is the foundational basis of our service to our patients.
I found this post very moving. As I get older and my health problems grow in number and severity, I increasingly wonder whether medical treatments are worth the candle. I recently had to decide whether to have my right knee replaced and, as I worked through the decision, I kept thinking that the men in my family tend to die early (my younger brother died several years ago). Not knowing how many years I have left, I found the decision very hard to make. I don't think my doctor could have made it any easier than he did. He was completely candid, which I appreciate, but there are so many risks and unknowns that can only be guessed at and weighed subjectively. I think I'd actually be glad to hear "there's nothing else medicine can do for you" when that is true, because I'd be spared having to make a difficult decision, one consequence of which could be to reduce the quality of my life during the time I have remaining.
Well said. Many times in my Emergency Medicine career l had to explain that there was nothing useful that I could do in the ED, but I almost always had a referral to provide… There were times that my referral came with a suggestion that it might be time to consider focusing on ‘learning to live with it’. With some patients, this was something they could accept - often they already suspected as much. And I have myself had to apply this advice to myself… I have found that acceptance is very liberating!
As you point out, we need to have the humility to consider that a colleague may have knowledge and experience that we lack when we feel that there are no remaining therapeutic options.
The thorny case that comes up in the addiction world is the level of care discussion. It is common enough that a patient is not doing well and an outpatient treatment is unlikely to help, but the patient refuses to detox in hospital or go to rehab. Often times, the options they need aren’t available as well. So then, the question is, should we offer them treatment that hasn’t helped.
In the opioid world, we can do a lot in terms of harm reduction, so the answer is almost always yes. But for a recent case of a patient with severe alcohol use, advanced liver disease, kidney disease, and other problems, offering him naltrexone in an outpatient clinic would have been irresponsible in my view.
As an internist with experience in palliative care, I do not agree with saying, “There is nothing more we can do.” This is a form of communication that is discouraged in the field, where good communication is one of the most important aspects of care.
Just as we avoid using medical jargon with patients in order to communicate more effectively, we must also be careful to communicate clearly and effectively in palliative care.
Of course, we should never lie — that should be a principle for life. But telling the patient or family, “We will do everything within our power to ensure that the care we provide — by doctors, nurses, and healthcare assistants — is as appropriate and clinically suitable to the situation as possible, always keeping in mind the greatest comfort we can offer,” is always truthful and fair. “Doing things” is not limited to diagnostic and therapeutic interventions; it includes everything from the smile of a healthcare assistant or nurse to the doctor’s communication with the patient and family.
Treating symptoms isn't nothing. It's one of the big things doctors do.
Dr. Cifu this podcast at this time couldn't be more poignant for me. I'm 65 and am an RN who actually self diagnosed an Avulsion of my right hamstrings. Wasn't that I even knew the term but as my symptoms began including numbers/tingling, discomfort standing or sitting for any length of time I researched and found I had textbook signs. My PCP is thoughtful and caring. He listens and considers everything going on with me. (I often say I'll pay the copay twice for being a therapist for just listening to me; and I can talk!) February I had the MRI which confirmed my suspicion and with a 13 cm retraction! To the point you made on this Fridays reflection; I've seen 5 or 6 doctors. Each requires endless forms, online consents, insurance info, and imaging studies. At the appointment- it's the technician, then the NP or PA and then the doctor comes in to say he/she only does knees or shoulders or the back. Did anyone take the time to read any of it?? I still have no idea about something as basic as my activity level, doing PT, exercising, or working- not to mention info on surgical options and planning for what I've read is an extensive recovery process.
I thought to myself- I can't be the only person in NYC with a hamstrings injury. Especially considering anything soccer is everywhere. Thank you for so much of what you and some of your colleagues bring to us.
The mind including the unconscious mind as a tremendous amount of control over our bodies as I've learned from being quadriplegic for over 20 years so I would suggest never telling someone there position is hopeless. On the other hand all too often I have seen doctors performed tests and surgery going neither would affect the patient's outcome. That to is immoral and in some cases fraudulent. I remember years ago reading an interview with a famous urologist leaves even doing futile procedures is forwarded for the patient's mental well-being. I disagree. Futility should limit what we do
You can get rich lying to people who want to be lied to. You can make a living telling the truth to people who want the truth. You'll go broke telling the truth to people who want to be lied to.
Tell the truth. Your patient panel will soon consist of people who want to hear the truth.
Very wise.
“A doctor saying he has nothing left to offer may be taking the easy way out.”
It’s just an expanded version of “my shift is over”. Don’t know if you have noticed, but real doctors are in very short supply.
I disagree that we don't conceal bad diagnoses from patients. While the evidence base (unfortunately, not often randomized trials) shows considerable variation in prognosis communication, many studies have found that physicians communicate prognosis in ways that are vague, non-quantitative, or difficult for patients to interpret (for example, relying on median survival, which many patients misunderstand). As a result, many patients leave believing their cancer is curable or without any meaningful understanding of how long people in similar situations typically live.
Technically, that may not meet a legal definition of "concealment." Functionally, however, it often has the same effect as patients fail to understand the seriousness of their illness. When clinicians consistently communicate in ways that do not produce comprehension, it is difficult to argue that this is simply accidental. Avoiding clear, quantitative discussions may reduce the discomfort of delivering devastating news, but it also deprives patients of the understanding they need to make informed decisions.
One of the few randomized trials relevant to this question was the landmark study of early palliative care in patients with incurable metastatic non-small cell lung cancer. Compared with standard oncology care alone, patients receiving early palliative care had a substantially better understanding of their prognosis:
Outcome Early palliative care | Standard care
Accurate understanding of prognosis over time | **82.5%** | **59.6%**
Believed cancer was curable at 12 weeks | **22.2%** | **39.5%**
Believed cancer was curable at 18 weeks | **17.8%** | **36.1%**
https://ascopubs.org/doi/abs/10.1200/jco.2010.32.4459
Very good points.
Adam
When trad med has nothing more to offer, that is when patients turn to alternative med. Some actually find relief there. Whether it is placebo effect or real can be hard to determine but often it is real. Not so much for true life threatening disease like cancer or major organ heart failure, more often for chronic nagging issues such as pain or endocrine issues. Others are simply throwing their money down a rat hole.
That said, I think trad Drs would do well to know of a Naturopath or two that they can send their "I have nothing left to offer" patients to -- with of course a hearty dose of "there is very little solid evidence that this will help, but some have found relief there.
BTH, I am firmly in the trad med camp & personally have never gone to a Naturopath --- yet!
This one makes me think.
I agree that “nothing more” can mean many things:
1. Nothing more that science “can” offer?
2. Nothing more that science has shown to be of benefit?
3. Nothing more that I am aware of to even know to consider it?
#3 is obviously the one that I imagine all of us stay up to date in order to try to avoid. Don’t condemn our patients by our own ignorance.
But #1 vs #2 is still a quandary…and one that Sensible Med helps tackle.
In my practice (general cards), severe TR and RHF is one such quagmire. Sure, we “can” offer TEER or THV, but should we? As Dr. JMM has nicely shown, trilluminate and triscend 2 are dog’s breakfasts.
When there is “tension” (to borrow from JMM) btw “can” vs “should”, at what point do you actually reach “nothing more”?
My 89 yo mother could be the female version of TR - she should have had knee replacements long ago but chose not to , she should have had a cochlear implant long ago but chose not to, now she is living with the consequences of her choices . Her genetics favor many more years of life with her chronic pain and disabilities. Fortunately , our family is lucky enough to have the ability to attend a Direct Pay Primary Care clinic for a flat monthly fee and her FM doc is readily available , sees her frequently , and does no harm , emphasizes with her situation , avoids recommending fruitless and dangerous interventions. She feels cared for despite that fact that there is no real cure for her problems. He is wise enough to schedule her for regular visits even when there is no real acute problem - leading to less acute problems . She has only been in the ED twice in the past 3 years - in contrast to her assisted living friends who are in and out of the ER, face numerous long waits and obstacles to seeing maybe a ARNP when there is an acute problem at the more traditional clinics and are always going for more tests and procedures in the last months of life. My mother has pointed out that all her friends who have passed seem to only go on hospice in the last few days of life- she has declared that she wants to enroll as soon as she is eligible when the time comes to " get the most bang for her buck" . We laugh about this . She can't hear , but she is an astute observer .
I have a practice that I use with every patient and I teach it to my trainees. “Every patient should leave each visit feeling better than when she came in.”
This patient? “Well, we’ve done a lot. You’ve done well for what you have and you and I will continue to work with the tools we both have. When do you want to come back?” If the answer is uncertain. “You got any problem you have my cellphone. I’m there for anything.”
As primary care physicians our most powerful therapeutic tools are listening and empathizing. We can always and should always provide partnership and comfort. That is the foundational basis of our service to our patients.
I found this post very moving. As I get older and my health problems grow in number and severity, I increasingly wonder whether medical treatments are worth the candle. I recently had to decide whether to have my right knee replaced and, as I worked through the decision, I kept thinking that the men in my family tend to die early (my younger brother died several years ago). Not knowing how many years I have left, I found the decision very hard to make. I don't think my doctor could have made it any easier than he did. He was completely candid, which I appreciate, but there are so many risks and unknowns that can only be guessed at and weighed subjectively. I think I'd actually be glad to hear "there's nothing else medicine can do for you" when that is true, because I'd be spared having to make a difficult decision, one consequence of which could be to reduce the quality of my life during the time I have remaining.
Well said. Many times in my Emergency Medicine career l had to explain that there was nothing useful that I could do in the ED, but I almost always had a referral to provide… There were times that my referral came with a suggestion that it might be time to consider focusing on ‘learning to live with it’. With some patients, this was something they could accept - often they already suspected as much. And I have myself had to apply this advice to myself… I have found that acceptance is very liberating!
As you point out, we need to have the humility to consider that a colleague may have knowledge and experience that we lack when we feel that there are no remaining therapeutic options.