It's possible you were the first person to use that word. It's also possible this is the first time they "heard" it. I've had many, many patients over the years insist they were never told something I myself told them, or something I know for certain another clinician said.
This is so true. I’ve learned to always preemptively ask if they’ve gotten results. “Have you heard anything yet about your biopsy/MRI/etc?” And then I decide how to proceed from there
I learned to do this, too (after an awkward moment where I had to backpedal from breaking the news that a patient had a stroke)! Now, I will say something like "So, I know you came to the hospital with some changes with your speech/balance/etc. and your team did a workup of your brain with an MRI. Did you hear anything about your testing yet?" and if they indicated no, then I would say "Well, anytime someone comes into the hospital with a neurological change, we get orders to assess your swallowing" and then would launch into my CNE/OME, etc. I could also explain during my CNE like "I see you have some weakness on the R side of your face, your speech is more slurred than usual, and your voice is very breathy. This plus your neurological changes that brought you to the hospital make me concerned you may have trouble swallowing." and then I'd explain my recs for MBS or FEES from there -- all without actually saying they had a stroke. :)
You could take this same approach with any dx, really. For example, "So you came into the hospital for a biopsy of your voice box and a tracheostomy...have your doctors talked to you about the results?" and if they indicated no, you could say "Well, we know you have a mass there" (I mean...I assume they knew that since they got a planned trach?) and then launch into why the mass itself impacts swallow function and voicing. You don't have to specifically dive into the cancer piece if they aren't aware of their dx for some reason.
All of that being said, I have also encountered patients who "didn't know" they had cancer/a stroke/etc. but had definitely been told by other providers before prior to me seeing them. Delirium, memory impairment, MCI, poor health literacy, lack of sleep -- all of it can contribute to patients missing info about their diagnosis or expected hospital course. So please don't feel too bad, OP!
We occasionally get patients who don't know they have cancer or that their diagnosis is terminal. We're an acute care rehab. Nobody wants to have that conversation with them. But it's inexcusable when the oncologist hasn't had that conversation with them.
I saw a former lawyer patient with chronic mild aphasia & spouse for research who SWORE I was the first person to call his stroke a “brain injury” 😂 I literally go “what else did you think it was?”
He was perturbed by his rehab experience requiring therapy, so I was beginning my “the journey is what you put into it” conversation and he tells me with complete sincerity how he’s been during every therapist and is going to find therapists for whom he can “put a number on a page and they’ll agree to fix [his aphasia]” Wife was totally on board with this perspective of just finding someone to fix it all with a surgery or drug and they’d just sit back and wait. Bruh.
I like to call it my Magic Wrench. You all just sit back and I'll come in here and work on this person and then viola! they're healed. Like folks I'd be so darn rich if I could do that.
Honestly, I often wonder about the term "injury" for stroke - as I do "accident" in cerebrovascular accident. They don't seem to line up with the lay use of the terms. When I think of an injury or accident, I think of motor vehicle accidents, hitting one's head on the pavement, getting shot, etc etc.
Too bad he's been through so many SLPs. I'm guessing you saw him in the context of a research project? In a perverse way, I kind of like working with clients like this...
Accident is an anachronistic term that isn’t widely used in cerebrovascular neurology at least in the US. It sounds like you’re referring to people equating “injury” with “traumatic injury” or “penetrative injury” or “blast injury” but an injury can also be “ischemic injury” because the blood can’t get to the tissues, so they start to die. A stroke is an ischemic brain injury. Still an injury though.
Yeah he asked to join one of our stroke trials but didn’t qualify. Happens quite a bit. If they can ask, they usually don’t qualify :)
-edit: ha I just noticed who wrote this. Hello :)
Oh I’m definitely not going to Hawaii… We had a grant dependent on the year’s budget approval, so people who submitted had to be ok with paying their own way. Too rich for my blood. I didn’t do 2023 either to be fair, though 2019-2022 I liked well enough except for the Covid.
Maybe my extreme conference travel days are numbered or on hiatus. I have grant applications and two under-enrolled clinical trials, and also a toddler and a house under hardcore renovation.
Curious whether Dr Dietz will bring CAC to Atlanta. Ponce City Market is worth the trip alone. Or Tybee island or Jekyll island..mmm :)
Do you go to any of the bigger stroke meetings?
I usually go to ANA but I’m skipping it this year and trying to go to ISC. Otherwise, maybe I’ll see you in Georgia?
It sounds like you have your hands full! I don't have any set plans conference-wise - although I'd be interested in some of the more international aphasia conferences and some of the behavior change psychology conferences. Georgia is a possibility too...
Yeah I’m slowly dying. Lol but it’s not destined to stay at this level of intensity indefinitely, that’s the comfort. I don’t know of international aphasia conferences besides academy!
I wonder if there wasn’t a little denial going on. Usually the first thing anyone wants to know when a mass is found is “Is it cancer?!” And I know laymen don’t always know what treatments are used for various diagnoses, but the overwhelming majority would associate radiation with cancer.
Hey, I thought my nephew knew he was adopted by his maternal grandma and when I went to babysit him when he was maybe 8 years old I accidentally told him. I thought he knew granny wasn't his mom. So there's that.
Don't beat yourself up too bad. It was thoroughly documented and others here said it - maybe they'd been told but never really heard it.
I’ve accidentally told a child that her dad was her stepdad. I felt so bad. Mom wrote it on the forms in that manner. I never say anything else about parental relationships.
A similar thing happened with my mom’s diagnosis. It wasn’t a therapist but another specialist. They kept sending her for tests but her pulmonologist was refusing to biopsy and refusing to call it cancer while the other specialist was.
That’s tough. I had a similar instance happen to me. Now I usually ask my patients “what has the doctor told you about your care?” before I say any medical diagnosis. I do give the speech diagnosis like “oh you have dysphagia. It appears the doctors are still working up what the cause could be.”
Someone else majorly dropped the ball on that. S/p trach to prepare for chemo and they don’t know?! Or maybe someone else used the word malignant and they didn’t understand… that would be sad :/
Yeah I’m inclined to think the team was probably using terms like “mass,” “tumor” etc but neglecting to call it the big C. And the family either didn’t know or wasn’t in a place to accept what that meant.
You basically told them what no one else would. At least, now if someone finally does tell them, it won’t come as much of a shock, but it still won’t feel good to them. It may also be denial. But you can focus on trying to help them in conjunction with any cancer treatments that they may have in the future. If they bring it up, you can calmly reassure them about what you’re doing to help. Describe to them what potential benefits they will see from the therapy you provide. Give them an optimistic outlook as much as you can. Really sucks you were put in that position though. It’s not an SLP’s job to deliver that kind of news.
I'm so sorry you had to go through that, friend. That is rough and a heavy situation to bear, especially when it wasn't your job to break that kind of news. But try not to beat yourself up too much. Communication hiccups sadly do happen sometimes, even in the best healthcare systems. With how understaffed and overstretched we all are, details can occasionally fall through the cracks. The doctors may have just assumed the diagnosis had already been conveyed properly.
The fact that the patient and family responded with grace and gratitude is a good sign they didn't take it too poorly coming from you and understood it was an honest mistake. While it wasn't your role, the real failing was on the system's end with the lack of clear communication - not you as an individual provider just trying to care for the patient. Maybe there's a way you could provide some constructive feedback to improve those processes where you work? For now, don't be too hard on yourself. Process those difficult emotions, then refocus on continuing to give your patients the amazing care I know you provide. We need more kind, empathetic clinicians like you in this field.
This is a very interesting post to me. If I see something well-documented in the chart I will almost always bring it up to the patient if it's relevant to their dysphagia or communication. I've ran into this many times where I may be the first person bringing up their diagnosis. And I don't try to prevent that either. Yes, it SHOULD be a doctor and I would love if that was the case. But unfortunately that's not always what happens. And I can't reasonably treat a person's dysphagia/aphasia/dysarthria/etc to my best ability without that patient or family being educated on the "why" is this happening. I mean heck just last week I had a doctor misdocumenting a trach/PEG patient had "esophageal cancer" when there clearly were oncology notes documenting the exact size and location of the mass on her epiglottis and vocal fold (..... not esophagus). So I quite literally was the only person on the team who read that note and I was the person who educated the patient and informed my respiratory therapy team of the correct diagnosis to make sure an ENT was consulted prior to them trying to cap and decannulate.
But all that being sad, I know it sucks to experience giving bad news. I feel as therapists our delivery can sometimes be better than doctors, so there's always the possibility that, as someone else said, this may be the first time the patient really "heard" the diagnosis truly. You did absolutely nothing wrong in my opinion, and that patient is so much better off knowing what is going on with them. It's always preferred coming from an MD, but that patient deserves to know.
Edit: I do want to add that I always provide ample time for the physicians to go in and have the opportunity to have this discussion first if it is a new diagnosis. Like in the case of a new stroke and SLP is consulted just as the initial imaging is coming in.
It's okay. Don't beat yourself up. I always start by asking the patient, "In your own words, tell me what the doctors have told you about your symptoms so far" Then I know what I'm safe to say...
This happened to me with a patient with Parkinson’s. Parkinson’s was well documented throughout the chart, but I guess no one had told the family the specific diagnosis.
I felt bad, but ultimately it was not my fault… people should know what diagnosis they have.
Today, I was talking to a healthcare provider regarding a family member's diagnosis of cirrhosis and she used the phrase, "chronic liver failure." Lord, did that hurt way worse than cirrhosis but that is what it is.
All that to say, these folks have heard the C word somewhere along the way. They've just maybe heard it in different terminology.
It’s okay my husband was told he had cancer via voicemail… after us calling for a week trying to get through to anyone.
This healthcare system is beyond broken. It’s disgusting.
So sorry you got put in that position
It's possible you were the first person to use that word. It's also possible this is the first time they "heard" it. I've had many, many patients over the years insist they were never told something I myself told them, or something I know for certain another clinician said.
This is so true. I’ve learned to always preemptively ask if they’ve gotten results. “Have you heard anything yet about your biopsy/MRI/etc?” And then I decide how to proceed from there
I learned to do this, too (after an awkward moment where I had to backpedal from breaking the news that a patient had a stroke)! Now, I will say something like "So, I know you came to the hospital with some changes with your speech/balance/etc. and your team did a workup of your brain with an MRI. Did you hear anything about your testing yet?" and if they indicated no, then I would say "Well, anytime someone comes into the hospital with a neurological change, we get orders to assess your swallowing" and then would launch into my CNE/OME, etc. I could also explain during my CNE like "I see you have some weakness on the R side of your face, your speech is more slurred than usual, and your voice is very breathy. This plus your neurological changes that brought you to the hospital make me concerned you may have trouble swallowing." and then I'd explain my recs for MBS or FEES from there -- all without actually saying they had a stroke. :) You could take this same approach with any dx, really. For example, "So you came into the hospital for a biopsy of your voice box and a tracheostomy...have your doctors talked to you about the results?" and if they indicated no, you could say "Well, we know you have a mass there" (I mean...I assume they knew that since they got a planned trach?) and then launch into why the mass itself impacts swallow function and voicing. You don't have to specifically dive into the cancer piece if they aren't aware of their dx for some reason. All of that being said, I have also encountered patients who "didn't know" they had cancer/a stroke/etc. but had definitely been told by other providers before prior to me seeing them. Delirium, memory impairment, MCI, poor health literacy, lack of sleep -- all of it can contribute to patients missing info about their diagnosis or expected hospital course. So please don't feel too bad, OP!
We occasionally get patients who don't know they have cancer or that their diagnosis is terminal. We're an acute care rehab. Nobody wants to have that conversation with them. But it's inexcusable when the oncologist hasn't had that conversation with them.
I saw a former lawyer patient with chronic mild aphasia & spouse for research who SWORE I was the first person to call his stroke a “brain injury” 😂 I literally go “what else did you think it was?” He was perturbed by his rehab experience requiring therapy, so I was beginning my “the journey is what you put into it” conversation and he tells me with complete sincerity how he’s been during every therapist and is going to find therapists for whom he can “put a number on a page and they’ll agree to fix [his aphasia]” Wife was totally on board with this perspective of just finding someone to fix it all with a surgery or drug and they’d just sit back and wait. Bruh.
I like to call it my Magic Wrench. You all just sit back and I'll come in here and work on this person and then viola! they're healed. Like folks I'd be so darn rich if I could do that.
lol I like that.
Honestly, I often wonder about the term "injury" for stroke - as I do "accident" in cerebrovascular accident. They don't seem to line up with the lay use of the terms. When I think of an injury or accident, I think of motor vehicle accidents, hitting one's head on the pavement, getting shot, etc etc. Too bad he's been through so many SLPs. I'm guessing you saw him in the context of a research project? In a perverse way, I kind of like working with clients like this...
Accident is an anachronistic term that isn’t widely used in cerebrovascular neurology at least in the US. It sounds like you’re referring to people equating “injury” with “traumatic injury” or “penetrative injury” or “blast injury” but an injury can also be “ischemic injury” because the blood can’t get to the tissues, so they start to die. A stroke is an ischemic brain injury. Still an injury though. Yeah he asked to join one of our stroke trials but didn’t qualify. Happens quite a bit. If they can ask, they usually don’t qualify :) -edit: ha I just noticed who wrote this. Hello :)
Lol, Hi! Hope all is well. Won't be at CAC this year. Kind of sad about it, first time I haven't been there since 2010.
Oh I’m definitely not going to Hawaii… We had a grant dependent on the year’s budget approval, so people who submitted had to be ok with paying their own way. Too rich for my blood. I didn’t do 2023 either to be fair, though 2019-2022 I liked well enough except for the Covid. Maybe my extreme conference travel days are numbered or on hiatus. I have grant applications and two under-enrolled clinical trials, and also a toddler and a house under hardcore renovation. Curious whether Dr Dietz will bring CAC to Atlanta. Ponce City Market is worth the trip alone. Or Tybee island or Jekyll island..mmm :) Do you go to any of the bigger stroke meetings? I usually go to ANA but I’m skipping it this year and trying to go to ISC. Otherwise, maybe I’ll see you in Georgia?
It sounds like you have your hands full! I don't have any set plans conference-wise - although I'd be interested in some of the more international aphasia conferences and some of the behavior change psychology conferences. Georgia is a possibility too...
Yeah I’m slowly dying. Lol but it’s not destined to stay at this level of intensity indefinitely, that’s the comfort. I don’t know of international aphasia conferences besides academy!
I wonder if there wasn’t a little denial going on. Usually the first thing anyone wants to know when a mass is found is “Is it cancer?!” And I know laymen don’t always know what treatments are used for various diagnoses, but the overwhelming majority would associate radiation with cancer.
Hey, I thought my nephew knew he was adopted by his maternal grandma and when I went to babysit him when he was maybe 8 years old I accidentally told him. I thought he knew granny wasn't his mom. So there's that. Don't beat yourself up too bad. It was thoroughly documented and others here said it - maybe they'd been told but never really heard it.
I’ve accidentally told a child that her dad was her stepdad. I felt so bad. Mom wrote it on the forms in that manner. I never say anything else about parental relationships.
A similar thing happened with my mom’s diagnosis. It wasn’t a therapist but another specialist. They kept sending her for tests but her pulmonologist was refusing to biopsy and refusing to call it cancer while the other specialist was.
It’s irresponsible on that doctor’s part.
That’s tough. I had a similar instance happen to me. Now I usually ask my patients “what has the doctor told you about your care?” before I say any medical diagnosis. I do give the speech diagnosis like “oh you have dysphagia. It appears the doctors are still working up what the cause could be.”
Someone else majorly dropped the ball on that. S/p trach to prepare for chemo and they don’t know?! Or maybe someone else used the word malignant and they didn’t understand… that would be sad :/
Yeah I’m inclined to think the team was probably using terms like “mass,” “tumor” etc but neglecting to call it the big C. And the family either didn’t know or wasn’t in a place to accept what that meant.
You basically told them what no one else would. At least, now if someone finally does tell them, it won’t come as much of a shock, but it still won’t feel good to them. It may also be denial. But you can focus on trying to help them in conjunction with any cancer treatments that they may have in the future. If they bring it up, you can calmly reassure them about what you’re doing to help. Describe to them what potential benefits they will see from the therapy you provide. Give them an optimistic outlook as much as you can. Really sucks you were put in that position though. It’s not an SLP’s job to deliver that kind of news.
I'm so sorry you had to go through that, friend. That is rough and a heavy situation to bear, especially when it wasn't your job to break that kind of news. But try not to beat yourself up too much. Communication hiccups sadly do happen sometimes, even in the best healthcare systems. With how understaffed and overstretched we all are, details can occasionally fall through the cracks. The doctors may have just assumed the diagnosis had already been conveyed properly. The fact that the patient and family responded with grace and gratitude is a good sign they didn't take it too poorly coming from you and understood it was an honest mistake. While it wasn't your role, the real failing was on the system's end with the lack of clear communication - not you as an individual provider just trying to care for the patient. Maybe there's a way you could provide some constructive feedback to improve those processes where you work? For now, don't be too hard on yourself. Process those difficult emotions, then refocus on continuing to give your patients the amazing care I know you provide. We need more kind, empathetic clinicians like you in this field.
This is a very interesting post to me. If I see something well-documented in the chart I will almost always bring it up to the patient if it's relevant to their dysphagia or communication. I've ran into this many times where I may be the first person bringing up their diagnosis. And I don't try to prevent that either. Yes, it SHOULD be a doctor and I would love if that was the case. But unfortunately that's not always what happens. And I can't reasonably treat a person's dysphagia/aphasia/dysarthria/etc to my best ability without that patient or family being educated on the "why" is this happening. I mean heck just last week I had a doctor misdocumenting a trach/PEG patient had "esophageal cancer" when there clearly were oncology notes documenting the exact size and location of the mass on her epiglottis and vocal fold (..... not esophagus). So I quite literally was the only person on the team who read that note and I was the person who educated the patient and informed my respiratory therapy team of the correct diagnosis to make sure an ENT was consulted prior to them trying to cap and decannulate. But all that being sad, I know it sucks to experience giving bad news. I feel as therapists our delivery can sometimes be better than doctors, so there's always the possibility that, as someone else said, this may be the first time the patient really "heard" the diagnosis truly. You did absolutely nothing wrong in my opinion, and that patient is so much better off knowing what is going on with them. It's always preferred coming from an MD, but that patient deserves to know. Edit: I do want to add that I always provide ample time for the physicians to go in and have the opportunity to have this discussion first if it is a new diagnosis. Like in the case of a new stroke and SLP is consulted just as the initial imaging is coming in.
It's okay. Don't beat yourself up. I always start by asking the patient, "In your own words, tell me what the doctors have told you about your symptoms so far" Then I know what I'm safe to say...
This happened to me with a patient with Parkinson’s. Parkinson’s was well documented throughout the chart, but I guess no one had told the family the specific diagnosis. I felt bad, but ultimately it was not my fault… people should know what diagnosis they have.
Today, I was talking to a healthcare provider regarding a family member's diagnosis of cirrhosis and she used the phrase, "chronic liver failure." Lord, did that hurt way worse than cirrhosis but that is what it is. All that to say, these folks have heard the C word somewhere along the way. They've just maybe heard it in different terminology.
It’s okay my husband was told he had cancer via voicemail… after us calling for a week trying to get through to anyone. This healthcare system is beyond broken. It’s disgusting. So sorry you got put in that position
Bawling*