Informing patients of bad news

[hehe5347]

Hey everyone I’m a relatively new attending, I was wondering how everyone approached delivering patients bad news. I have EPIC so sometimes patients will see the results of their own liver biopsy and my practice pattern is to typically say we will discuss scans & results at the next visit, especially if it doesn’t change management.
But I sometimes run into the case where a scan will show disease progression and I’m not sure if they would benefit from a phone call prior to the visit to prepare them or if this would make them more anxious.
Recently I had a patient who was starting chemo for unresectable pancreatic cancer but also had possible metastatic disease that was being biopsied for confirmation. We had discussed that our chemo plan would not change based upon biopsy results (hence why we started it without waiting for the results). The pt’s follow up was 2 weeks later and they were upset they were not called with the results, even though they saw the results themselves and were already started on chemo.

I guess it comes down to communication and setting expectations ahead of time, but anyone have a system for this?

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[NewYorkDoctors]

Hey everyone I’m a relatively new attending, I was wondering how everyone approached delivering patients bad news. I have EPIC so sometimes patients will see the results of their own liver biopsy and my practice pattern is to typically say we will discuss scans & results at the next visit, especially if it doesn’t change management.
But I sometimes run into the case where a scan will show disease progression and I’m not sure if they would benefit from a phone call prior to the visit to prepare them or if this would make them more anxious.
Recently I had a patient who was starting chemo for unresectable pancreatic cancer but also had possible metastatic disease that was being biopsied for confirmation. We had discussed that our chemo plan would not change based upon biopsy results (hence why we started it without waiting for the results). The pt’s follow up was 2 weeks later and they were upset they were not called with the results, even though they saw the results themselves and were already started on chemo.

I guess it comes down to communication and setting expectations ahead of time, but anyone have a system for this?

not heme onc for disclaimer (i am pulmonary)

but this issue is rather prevalent in all medical subspecialties in which the patient has access to reports / records before a follow up visit.

as long as standard of care is done, you won't get sued or anything. but patient disappointment can tank your satisfaction scores. while that is silly it is part of the game. i am fully private and i couldn't get less about satisfaction scores (though i get all 5 stars)
rather I am always emailing, portal messaging, calling only if necessary (though I can bill for that), or having patients schedule extra visits.

sometimes when I get a LDCT screening report in my inbox (the local radiology center write sreports very quickly), I call patient same day (and bill for it) just to "get it out of the way."

plus don't forget this quick response often helps alleviate some worry (even if we as doctors are not worried). while I do not care about any patient satisfaction scores, I care about maintaining good rapport and trust with the patient. This is how the patient and family buys in and continues on without causing "trouble or being difficult." Basically if I were the patient's family, I would appreciate (though not demand) close communication even if by electronic messaging.


Edit: I work in NYC. I see very impatient and spoiled patients many times who demand instant gratification. Whether this is a rich entitled spoiled brat patient or just an impatient blue collar individual who wants instant gratification (think of that stereotypical New Yorker in the 2002 Sam Raimi Spiderman movie on the bridge "you mess with one of us you mess with all of us!"). Hence I tend to want to speed things along primarily to "get it out of the way" so my front desk is not harassed about "why didn't you give me concierge level of instant care for my Medicaid insurance" statements.

 

[Ubba]

Set the stage when you walk into the room. Serious demeanor. Sotto voce voice. Concerned, earnest look on your face with the brow slightly furrowed. Gently ask what the patient understands about what's been found so far (very frequently, the patient already has a suspicion as to what's going on and you're not really shocking them). Slowly present the positive findings and give the patient time to process. Don't allow the silence to become pregnant with awkwardness and suspense. Explain that while there are no guarantees, we have entered an era of more and more personalized medicine that improves the ratio of efficacy to toxicity. Assure them that you'll be there throughout the process and that if there comes a point when pain management becomes important, the sky is the limit with respect to our ability to take care of that.

And I always hedge to the prognostic downside.

EDIT: I totally forgot to add my 2 cents about the calls. I'm just a fellow, so it's not my place to recommend things to an attending, but if I were to be an attending tomorrow, I'd take a balanced approach. If the next scheduled visit is in 2-3 days, it's fair to wait until the visit to discuss progression. If in 2-3 weeks, It doesn't seem fair to make a patient wait that long before knowing the truth. Same principles as above, though you may want to have some light multitasking chores ready on the side. Phone calls are seldom efficient.

 

[gutonc]

Hey everyone I’m a relatively new attending, I was wondering how everyone approached delivering patients bad news. I have EPIC so sometimes patients will see the results of their own liver biopsy and my practice pattern is to typically say we will discuss scans & results at the next visit, especially if it doesn’t change management.
But I sometimes run into the case where a scan will show disease progression and I’m not sure if they would benefit from a phone call prior to the visit to prepare them or if this would make them more anxious.
Recently I had a patient who was starting chemo for unresectable pancreatic cancer but also had possible metastatic disease that was being biopsied for confirmation. We had discussed that our chemo plan would not change based upon biopsy results (hence why we started it without waiting for the results). The pt’s follow up was 2 weeks later and they were upset they were not called with the results, even though they saw the results themselves and were already started on chemo.

I guess it comes down to communication and setting expectations ahead of time, but anyone have a system for this?

Yes, set expectations ahead of time. Nobody walks out of my clinic with pending results (labs, scans, path, whatever) without a solid plan for communicating those results to them. If I think they’re going to be dramatic about it I’ll send them a MyChart message reminding them of this while I’m in the room and dictate it to them as I type.

Honestly, it gets easier as time goes on. There’s also an art to timing the testing and the follow up. Pre-pando this was a lot easier, as I could pretty easily guess it would take 2 weeks to get a CT done and I would have my staff schedule follow up for the next day or so. Post pando, now that nobody wants to work, I just throw it all up in the air and hope it kind of lands generally where I need it to.

I also think it’s critical to set the expectation that NOTHING is an emergency. I’m serious. Literally nothing in a test that you do for an Onc patient is an emergency. If it was, you’d have sent them to that emergency place.

 

[Mehena]

I am a new attending, and I am extremely annoyed by the tyranny of EMR. However, my only consolation is that things may improve as I develop a stable panel of follow-up patients.

1. As a new attending, I have been receiving numerous new benign consults for whom I need to order multiple labs. Often, I receive messages like "Hey doc, my results show low MCHC" or "My absolute eosinophil count is 501, and it says 'High.' Do I have leukemia?" Some patients demand an immediate call from the doctor or persistently harass the front staff. These patients are usually referred by PCPs or other subspecialists with undiagnosed multisystem complaints. You could say they were "punted" from one specialty to another. The moment they notice an abnormal blood count, they get referred to hematology, expecting instant answers and a unifying diagnosis and treatment.

2. A new cancer diagnosis is understandably very anxiety-provoking. Patients want answers immediately and a treatment plan right away. These new patients are time-consuming and require significant coordination of care, including biopsies, next-generation sequencing, symptom management, and discussions with multiple family members. These patients also tend to seek second opinions and explore different hospitals and physicians, often ending up with the same NCCN standard of care recommendation. On the other hand, stable follow-up patients experience less drama and have clearer expectations.

3. It does not help that with the rise of social media, patients are increasingly trusting the medical opinions of figures like Joe Rogan, Peter Attia, and Elon Musk more than traditional MDs and evidence-based medicine. Additionally, some of the damage comes from within the medical community itself through the inconsistency of attention-seeking "prima donna" armchair key opinion leaders who have become social media stars.

4. In my opinion, with experience, one can become jaded or begin to understand what can and cannot be controlled, leading to mental equanimity.

5. As the saying goes, "It takes 20 years to look like an overnight success." So, I hold onto the hope of continued improvement.

 

[CatFactorial]

Hey everyone I’m a relatively new attending, I was wondering how everyone approached delivering patients bad news. I have EPIC so sometimes patients will see the results of their own liver biopsy and my practice pattern is to typically say we will discuss scans & results at the next visit, especially if it doesn’t change management.
But I sometimes run into the case where a scan will show disease progression and I’m not sure if they would benefit from a phone call prior to the visit to prepare them or if this would make them more anxious.
Recently I had a patient who was starting chemo for unresectable pancreatic cancer but also had possible metastatic disease that was being biopsied for confirmation. We had discussed that our chemo plan would not change based upon biopsy results (hence why we started it without waiting for the results). The pt’s follow up was 2 weeks later and they were upset they were not called with the results, even though they saw the results themselves and were already started on chemo.

I guess it comes down to communication and setting expectations ahead of time, but anyone have a system for this?

New attending (1 year), BMT/malignant heme.

If things are clearly going the wrong way and there are no options

Generally:

[vaguely]
”What is your understanding of the situation?”
[transition quickly but directly]
You’re dying/have you considered hospice/have you considered not treating

 

[NewYorkDoctors]

I am a new attending, and I am extremely annoyed by the tyranny of EMR. However, my only consolation is that things may improve as I develop a stable panel of follow-up patients.

1. As a new attending, I have been receiving numerous new benign consults for whom I need to order multiple labs. Often, I receive messages like "Hey doc, my results show low MCHC" or "My absolute eosinophil count is 501, and it says 'High.' Do I have leukemia?" Some patients demand an immediate call from the doctor or persistently harass the front staff. These patients are usually referred by PCPs or other subspecialists with undiagnosed multisystem complaints. You could say they were "punted" from one specialty to another. The moment they notice an abnormal blood count, they get referred to hematology, expecting instant answers and a unifying diagnosis and treatment.

2. A new cancer diagnosis is understandably very anxiety-provoking. Patients want answers immediately and a treatment plan right away. These new patients are time-consuming and require significant coordination of care, including biopsies, next-generation sequencing, symptom management, and discussions with multiple family members. These patients also tend to seek second opinions and explore different hospitals and physicians, often ending up with the same NCCN standard of care recommendation. On the other hand, stable follow-up patients experience less drama and have clearer expectations.

3. It does not help that with the rise of social media, patients are increasingly trusting the medical opinions of figures like Joe Rogan, Peter Attia, and Elon Musk more than traditional MDs and evidence-based medicine. Additionally, some of the damage comes from within the medical community itself through the inconsistency of attention-seeking "prima donna" armchair key opinion leaders who have become social media stars.

4. In my opinion, with experience, one can become jaded or begin to understand what can and cannot be controlled, leading to mental equanimity.

5. As the saying goes, "It takes 20 years to look like an overnight success." So, I hold onto the hope of continued improvement.

Again I am not hemeonc but I hear you loud and clear. These are all things I had to deal with but found work arounds for as the years went on.

1) when I get a nothingburger consult, I just view it as "an easy consult" and then do the internal medicine level of management. This includes providing reassurance and giving reading materials (assuming the patient wants to read something) and ensuring open communication. I do not allow these patients to walk in any time but I I allow them to portal message and email me (on a HIPAA secure serve). I tell them I am not a concierge ChatGPT (or Ask Jeeves for the older generation) but if I can open up dialogue via email (which is much faster for me) and if I can exhaust them with a lot of reading materials and/or youtube video links, that tends to get them to stop bothering me after a while. It shows I cared and I can do these e-messaging on the toilet. Win-win!

As for the patients who think specialist = pokemon center nurse joy instant max full restore , I set the conversation and frame it a certain way. I tell them after a thorough (though not an unreasonable and unnecessary) workup, I will say congratulations you do not have such a debilitating chronic lung disease! While I know it would have been satisfying for a little while to get a rare diagnosis, that would soon become miserable. Then I will send them back to PCP but I will say at least your PCP has narrowed it down somewhat.

It is not helpful to say "ugh this is MKSAP level Internal medicine stuff. your PCP should not have sent you here." to start patients have no idea what MKSAP is. second, not every patient is a primary gain basket case. If I had some disease I knew little about, I would probably be reading uptodate ad nauseum and also being a little neurotic. third, maybe the PCP already tried to deal with it but the patient wants a subspecialist to give the final say. sometimes i wonder how much garbage PCPs have already dealt with and managed to avoid referrals for.

not being helpful (or pretending to be helpful) for patients leads to low rankings and scores. not that I personally care about what a satisfaction score shows, but I take pride in "taking care of the patient's problem" mental score.

2) regarding the multiple family members, I make it to clear to patients that I am not an operator / podcaster / or whatever the term is to call every single family member. I inform them I can send a HIPAA compliant email on a secure server to anyone they wish. but it would be taking away from other patient's families to get me on the phone for a personal touch message like a Cameo celebrity video message. they would not want that either. again I play this into the whole email me anytime and I'll get back to you while i'm on the toilet on my phone.

3) true and true. However, patients need to feel like THEY WERE THE ONES who came up with the idea to feel self-empowered. I try my best to twist this to my advantage using reverse psychology. If a patient's first impression is "statins bad evil," I will say something to the lines of "yeah big pharmacy and their lobbyists are all croooks. but it doesn't change the fact that the statins in the RIGHT patient population really can help prevent ASCVD. I will email you the ASCVD risk score calculator, the Reynold's risk score calculator, and some reading materials. I will also provide some reading on monacalin B the red yeast rice which is the same as lovastatin. please take a read and get back to me." a few patients then do their due diligence and tell me oh wow yes i will take this. then I say "yes this was all your idea. your freedom! your choice!"

4) While I am more annoyed at bad patient behavior than ever as I get older, I do realize that every new patient should be thought of as "this patient needs to learn the ropes and I need to be the coach." I cannot expect all patients in the world to conform to my world view after all.

5) indeed things get better as you go along, create your own system of patient management, and then create your own unique strategies in how to deal with things.

3)

 

[MD46]

On the initial visit I make it clear you will get a call or a message for any “concerning abnormal labs” apart from that will not call for normal or what I consider abnormal. Will discuss on followup visit.

My Nurse has been instructed to reply to for example “high MCHC” , saying , doctor will discuss on your followup visit. Thats it, nothing more nothing less, they can complain to anyone they want.

For detailed Mychart or emr messages. We are trying to implement what hopkins did. They are charging for replying to inbasket messages and insurance pays for it. This makes the messages far less and if it requires your time we get paid for our time like any other profession like lawyers etc.

We allow as a policy one person with the patient. No recording video or audio. They can update the rest of the family later. If there are rare circumstances where another member wants to be very involved we make an exception to allow two but not all the time.


Need to set some boundaries as things are already hard as it is.

In the end the admins specifically in the hospital employed setting treat you as some one providing a service not a doctor, we need to push against this mind set and maintain respect/dignity.
Some people may not agree with this approach, but just my 2 cents .

 

[bobsmith]

i am fully private and i couldn't get less about satisfaction scores (though i get all 5 stars)

while I do not care about any patient satisfaction scores, I care about maintaining good rapport and trust with the patient.

not being helpful (or pretending to be helpful) for patients leads to low rankings and scores. not that I personally care about what a satisfaction score shows

I mean, it kinda sounds like maybe you do care about satisfaction scores a little bit though

 

[NewYorkDoctors]

I mean, it kinda sounds like maybe you do care about satisfaction scores a little bit though

Well as a Social media score vanity type of thing. It makes my proud on the inside that my by the books approach , no short cuts like many community doctors take , and email patients at odd hours of the night is leading to satisfied customers and I’m not selling snake oil or giving Willy nilly antibiotics to get by .

Not as a hospital administrator doom and gloom type of thing .there is no financial hit to me if someone gave a low score .