What recourse do I have with Kaiser Urgent Care?
April 8, 2024 8:12 AM Subscribe
There was a major missed opportunity last week when I was in Urgent Care that was skipped due to communication issues. What recourse do I have here?
Last week, as you know, I lost control of my facilities, so I went to Urgent Care last Monday, and ended up being kept there overnight for observation. I continued to lose control overnight, and the following night (at home, but it was minor) and regained control on Wednesday fully.
A nurse I was working with at Urgent Care wanted to do a stool test, so she gave me the kit to take. There was no ASL interpreter present at the time, so we managed to communicate using gestures. She was a bit unclear with the instructions, because there were three containers — I thought I only had to scoop the poop in the empty container, because the two others had fluids in them so I thought I could not open/touch them. I completed the test and then handed it over. I was told that it was incomplete, but to not worry about it. They ended up not using the kit at all (tossed it away I think). The doctor at Urgent Care seemed confident it was simply food poisoning.
Today, I met with my new oncologist (my current oncologist, who is excellent, is leaving on pregnant leave so the new oncologist is taking over), and he was very concerned about me losing control of my facilities last week, and said that it could have been caused by the immunotherapy that I am taking, and that they needed a stool test at the Urgent Care to see if it was caused by food poisoning or immunotherapy. If it was caused by immunotherapy, he said that would mean the use of immunotherapy needs to be discontinued. Emphasis mine. He was concerned it would happen again and again, and become a frequent/recurring issue and lead to hospitalization.
He warned me that next time I do immunotherapy, the same thing might happen. As we do not have the data needed (stool sample from last Monday), there is no way to know what really happened and caused me to lose control. Alas, because of communication issues, I am facing this issue.
I am angry because it's already hard as it is, being Deaf in a hearing world, and often we miss important clues or instructions like this, and now this could have a big impact on my future. What recourse do I have? Kaiser is extremely bureaucratic, and I'm not sure of the right procedure or process. I am angry because this COULD have been addressed at Urgent Care, but it was not.
Thank you for any input you might have.
Last week, as you know, I lost control of my facilities, so I went to Urgent Care last Monday, and ended up being kept there overnight for observation. I continued to lose control overnight, and the following night (at home, but it was minor) and regained control on Wednesday fully.
A nurse I was working with at Urgent Care wanted to do a stool test, so she gave me the kit to take. There was no ASL interpreter present at the time, so we managed to communicate using gestures. She was a bit unclear with the instructions, because there were three containers — I thought I only had to scoop the poop in the empty container, because the two others had fluids in them so I thought I could not open/touch them. I completed the test and then handed it over. I was told that it was incomplete, but to not worry about it. They ended up not using the kit at all (tossed it away I think). The doctor at Urgent Care seemed confident it was simply food poisoning.
Today, I met with my new oncologist (my current oncologist, who is excellent, is leaving on pregnant leave so the new oncologist is taking over), and he was very concerned about me losing control of my facilities last week, and said that it could have been caused by the immunotherapy that I am taking, and that they needed a stool test at the Urgent Care to see if it was caused by food poisoning or immunotherapy. If it was caused by immunotherapy, he said that would mean the use of immunotherapy needs to be discontinued. Emphasis mine. He was concerned it would happen again and again, and become a frequent/recurring issue and lead to hospitalization.
He warned me that next time I do immunotherapy, the same thing might happen. As we do not have the data needed (stool sample from last Monday), there is no way to know what really happened and caused me to lose control. Alas, because of communication issues, I am facing this issue.
I am angry because it's already hard as it is, being Deaf in a hearing world, and often we miss important clues or instructions like this, and now this could have a big impact on my future. What recourse do I have? Kaiser is extremely bureaucratic, and I'm not sure of the right procedure or process. I am angry because this COULD have been addressed at Urgent Care, but it was not.
Thank you for any input you might have.
Response by poster: I am in process of finding a therapist — Kaiser denied the request to continue with my current therapist. Please keep that separate from this. This question is not about my mental health.
Yes, it IS an impact on my future. The oncologist sounded very serious about this, and emphasized it could lead to hospitalization and needing an IV. He said he was very concerned. If that does not sound serious, then what isn't?
I pointed to the empty container, asking the nurse if I had to scoop it in there. She said yes. She did not point to the other containers, so what else was I supposed to believe?
posted by dubious_dude at 8:48 AM on April 8
Yes, it IS an impact on my future. The oncologist sounded very serious about this, and emphasized it could lead to hospitalization and needing an IV. He said he was very concerned. If that does not sound serious, then what isn't?
I pointed to the empty container, asking the nurse if I had to scoop it in there. She said yes. She did not point to the other containers, so what else was I supposed to believe?
posted by dubious_dude at 8:48 AM on April 8
He said he was very concerned.
Of course he's concerned. First, he doesn't want you to have to go through an experience like that again, especially since you're already weak. If you do, you might get dehydrated enough to get admitted and need an IV, which is unpleasant. More importantly, if you do have another bad reaction, and you ultimately decide that the costs outweigh the benefits, then you'll have to stop a treatment that is helping to keep you alive. That is a serious concern! But, while it might save you an IV, having had the test would not have prevented that outcome. It would just have gotten you there faster.
Basically, it's unfortunate you didn't complete the test at the time, and if you have the energy to do it, it's worth raising the issue with member services (ask for complaint/ombuds), but in the end that's something of a side issue and should be treated as such. You won't be getting "recourse" here. You may be helping pressure the local ER to improve their accessibility, which is a good thing for everyone but won't help you much directly. That may be worth your limited energy at this time, but if you don't care about that, you won't be getting much satisfaction from the complaint process.
(Again, seriously, not blaming you, because you were acutely ill at the time and trying to cope with a communications barrier. But, since you ask, as a practical matter, it's better to try, to the extent you're even up to it, to engage actively in your care, both because medical personnel screw up all the time in general and because in your case specifically the odds of miscommunication are much higher. If someone hands you something for a test, it's probably for a reason. "What are these for?" I bet you have a bag for emergency hospital visits now--make sure there's a pen and paper in there.
Along those lines, before you get another infusion, talk your oncologist through specifically what to watch out for afterwards and if there are any additional tests or treatments that you should pursue at the ER if you have another episode. Write it down, or ideally get him to write it down, so you have it to hand to your care provider if you have to.)
posted by praemunire at 9:16 AM on April 8 [8 favorites]
Of course he's concerned. First, he doesn't want you to have to go through an experience like that again, especially since you're already weak. If you do, you might get dehydrated enough to get admitted and need an IV, which is unpleasant. More importantly, if you do have another bad reaction, and you ultimately decide that the costs outweigh the benefits, then you'll have to stop a treatment that is helping to keep you alive. That is a serious concern! But, while it might save you an IV, having had the test would not have prevented that outcome. It would just have gotten you there faster.
Basically, it's unfortunate you didn't complete the test at the time, and if you have the energy to do it, it's worth raising the issue with member services (ask for complaint/ombuds), but in the end that's something of a side issue and should be treated as such. You won't be getting "recourse" here. You may be helping pressure the local ER to improve their accessibility, which is a good thing for everyone but won't help you much directly. That may be worth your limited energy at this time, but if you don't care about that, you won't be getting much satisfaction from the complaint process.
(Again, seriously, not blaming you, because you were acutely ill at the time and trying to cope with a communications barrier. But, since you ask, as a practical matter, it's better to try, to the extent you're even up to it, to engage actively in your care, both because medical personnel screw up all the time in general and because in your case specifically the odds of miscommunication are much higher. If someone hands you something for a test, it's probably for a reason. "What are these for?" I bet you have a bag for emergency hospital visits now--make sure there's a pen and paper in there.
Along those lines, before you get another infusion, talk your oncologist through specifically what to watch out for afterwards and if there are any additional tests or treatments that you should pursue at the ER if you have another episode. Write it down, or ideally get him to write it down, so you have it to hand to your care provider if you have to.)
posted by praemunire at 9:16 AM on April 8 [8 favorites]
What recourse do I have?
What recourse would you like? (Recourse is probably the wrong word here, but what response from Kaiser would be helpful to you?) Decide what specifically you want from them, and then ask for it. Don't expect a lot, though. If you don't get the kind of response you want, don't let it eat you up; either channel it towards contributing to local patient advocacy groups, or decide to accept it and let it go.
From your description it sounds like the nurses/doctors weren't very careful or particular about how you did your test because they didn't think it was relevant. Maybe because they weren't aware of your cancer treatment, and maybe because they didn't understand the value the test might potentially have had wrt evaluating the effects of that treatment. Both of those possibilities are problematic, but (and probably I'm missing something) either way they don't seem to stem directly from your deafness but rather from general crappy communication both on the part of the nurse and internally at Kaiser.
Regardless of what Kaiser can, might, or should do, as a pragmatic approach for yourself, I'd do the following:
- type up a short list of vital info you need medical staff to know, and have it on hand to use in future situations
-whether in that note or otherwise, insist that staff communicate with you through writing rather than gestures (?!)
-ask your oncologist if there are any notes he can put in the system to try to make sure more importance is placed by unfamiliar staff on your immunotherapy status, or if there's any other strategy he can think of to avoid this kind of thing. (Frankly, if your oncologist were truly concerned he should already have brought it up with Kaiser. It sounds like he doesn't want this to happen again, but it also sounds like he's not envisioning it being life-threatening, just not great.)
- consider letting your oncologist know you have a tendency to severe anxiety, such that if it ever happens that he's shooting his mouth off a little heedlessly, maybe he shouldn't
If your sickness really was an effect of your treatment and it ends up happening again then the problem will at least solve itself, albeit unpleasantly, because you'll be in a situation to do the test again. It's not something that would need to happen "again and again".
For whatever it's worth, I have full hearing and have multiple times misunderstood or just plain not understood medical instructions and have either done things wrong or had to insist on clarification, often several times, while the harried staff member continued to explain badly and usually with great annoyance at my insistence and slowness. (Too bad for them, though.) This is a really common thing, unfortunately. It's especially problematic when you're not in good enough shape to advocate for yourself or insist on clarity. If it's at all possible for you to set up some arrangements with friends such that hopefully one of them can come help you out in these kinds of situations, do it. (This is one more reason to maybe not be too proactive about cutting people out of your life, tbh.) If there is a professional service that can offer this kind of help on short notice, sign up for it.
posted by trig at 9:18 AM on April 8 [5 favorites]
What recourse would you like? (Recourse is probably the wrong word here, but what response from Kaiser would be helpful to you?) Decide what specifically you want from them, and then ask for it. Don't expect a lot, though. If you don't get the kind of response you want, don't let it eat you up; either channel it towards contributing to local patient advocacy groups, or decide to accept it and let it go.
From your description it sounds like the nurses/doctors weren't very careful or particular about how you did your test because they didn't think it was relevant. Maybe because they weren't aware of your cancer treatment, and maybe because they didn't understand the value the test might potentially have had wrt evaluating the effects of that treatment. Both of those possibilities are problematic, but (and probably I'm missing something) either way they don't seem to stem directly from your deafness but rather from general crappy communication both on the part of the nurse and internally at Kaiser.
Regardless of what Kaiser can, might, or should do, as a pragmatic approach for yourself, I'd do the following:
- type up a short list of vital info you need medical staff to know, and have it on hand to use in future situations
-whether in that note or otherwise, insist that staff communicate with you through writing rather than gestures (?!)
-ask your oncologist if there are any notes he can put in the system to try to make sure more importance is placed by unfamiliar staff on your immunotherapy status, or if there's any other strategy he can think of to avoid this kind of thing. (Frankly, if your oncologist were truly concerned he should already have brought it up with Kaiser. It sounds like he doesn't want this to happen again, but it also sounds like he's not envisioning it being life-threatening, just not great.)
- consider letting your oncologist know you have a tendency to severe anxiety, such that if it ever happens that he's shooting his mouth off a little heedlessly, maybe he shouldn't
If your sickness really was an effect of your treatment and it ends up happening again then the problem will at least solve itself, albeit unpleasantly, because you'll be in a situation to do the test again. It's not something that would need to happen "again and again".
For whatever it's worth, I have full hearing and have multiple times misunderstood or just plain not understood medical instructions and have either done things wrong or had to insist on clarification, often several times, while the harried staff member continued to explain badly and usually with great annoyance at my insistence and slowness. (Too bad for them, though.) This is a really common thing, unfortunately. It's especially problematic when you're not in good enough shape to advocate for yourself or insist on clarity. If it's at all possible for you to set up some arrangements with friends such that hopefully one of them can come help you out in these kinds of situations, do it. (This is one more reason to maybe not be too proactive about cutting people out of your life, tbh.) If there is a professional service that can offer this kind of help on short notice, sign up for it.
posted by trig at 9:18 AM on April 8 [5 favorites]
Three options you may want to try that have successfully helped me in the past:
Patient advocate (I contacted my hospital to find out how to access the patient advocate there) when I was given an unnecessary vaccination and was billed $500 for it (I got my money back).
Ombuds (I googled to find out how to contact the ombuds in my area when a relative was being abused by a caregiver in an adult family home. The ombuds addressed it, and relative was moved to another unit).
Joint Commission (www.jointcommission.org) when another relative was a victim of malpractice (but Joint Commission addresses much more than just malpractice).
Hope this helps!
posted by SageTrail at 9:24 AM on April 8 [2 favorites]
Patient advocate (I contacted my hospital to find out how to access the patient advocate there) when I was given an unnecessary vaccination and was billed $500 for it (I got my money back).
Ombuds (I googled to find out how to contact the ombuds in my area when a relative was being abused by a caregiver in an adult family home. The ombuds addressed it, and relative was moved to another unit).
Joint Commission (www.jointcommission.org) when another relative was a victim of malpractice (but Joint Commission addresses much more than just malpractice).
Hope this helps!
posted by SageTrail at 9:24 AM on April 8 [2 favorites]
They ended up not using the kit at all (tossed it away I think).
Ok, so the first thing I'd do is confirm that it is actually tossed and if the sample is still there, put them in touch with your oncologist to see if it's still possible to do a test to determine the cause.
What recourse do I have?
Do you mean legally? It's really hard to sue doctors in the US, and even on the off-chance that you were successful it would take a lot of time and energy.
What I would do is to have a pre-written form explaining your current medical condition and thus the high stakes of any miscommunication. Next time they deny you an ASL interpreter either tell them you'll wait until one arrives or demand that all communication happens via text. I would also threaten to report them for non ADA compliance if they refuse to get you an interpreter.
And then, since you know that there is a risk this might happen again, do you have any hearing friend or family that might be willing to be on-call should you find yourself in a similar situation again, even if just over video chat?
posted by coffeecat at 9:37 AM on April 8 [1 favorite]
Ok, so the first thing I'd do is confirm that it is actually tossed and if the sample is still there, put them in touch with your oncologist to see if it's still possible to do a test to determine the cause.
What recourse do I have?
Do you mean legally? It's really hard to sue doctors in the US, and even on the off-chance that you were successful it would take a lot of time and energy.
What I would do is to have a pre-written form explaining your current medical condition and thus the high stakes of any miscommunication. Next time they deny you an ASL interpreter either tell them you'll wait until one arrives or demand that all communication happens via text. I would also threaten to report them for non ADA compliance if they refuse to get you an interpreter.
And then, since you know that there is a risk this might happen again, do you have any hearing friend or family that might be willing to be on-call should you find yourself in a similar situation again, even if just over video chat?
posted by coffeecat at 9:37 AM on April 8 [1 favorite]
This sounds incredibly frustrating and concerning, and I too would be super annoyed that I was given incomplete test instructions and therefore missed an opportunity to get more information about my health at a pretty damn important time. Yes, definitely you can do another test if this happens again, and hopefully it will not and this whole thing will be unimportant, but the ER should have given you adequate instructions and I'm kind of surprised to see people brushing that off.
In your shoes, I would be looking for a patient advocate or ombudsperson at the hospital, and sending a polite but firm message asking them to ensure written or video instructions are available for all common take-home tests. This would help many different types of patient - including just, like, the incredibly common patient type of 'stressed at the hospital and didn't fully take in the instructions'.
I'm glad you're feeling better, and hoping that you don't have this issue again and can continue your immunotherapy.
posted by In Your Shell Like at 10:37 AM on April 8
In your shoes, I would be looking for a patient advocate or ombudsperson at the hospital, and sending a polite but firm message asking them to ensure written or video instructions are available for all common take-home tests. This would help many different types of patient - including just, like, the incredibly common patient type of 'stressed at the hospital and didn't fully take in the instructions'.
I'm glad you're feeling better, and hoping that you don't have this issue again and can continue your immunotherapy.
posted by In Your Shell Like at 10:37 AM on April 8
Response by poster: Apologies if I sounded a bit defensive in my initial response.
I called Member Services and left a complaint. Not seeking monetary compensation as "recourse", but yes, a complaint is a good idea, and something that I did. If anything, it'll improve things for next time.
I like the idea of a simple printout with key issues and needs. Will try that moving forward.
What made me angry is that Kaiser continues to advertise their services as integrated, all-in-one. The Urgent Care (this wasn't a hospital/ER, it was a Kaiser-run/owned Urgent Care) staff should have seen my chart, seen that I'm a cancer patient, coordinated care with my oncologist, and part of that was ensuring the stool sample was properly collected. Kaiser sells its services as "coordinated care", but this was not it.
I wasn't denied interpreters — they had a VRI (virtual interpreter) machine at the ready. It's just that the nurse handed me the stool kit and we gestured. Seemed simple enough, but too bad it wasn't a situation where communication went effectively. In hindsight, perhaps I should have insisted on utilizing the VRI machine to be completely clear, but things fell through the cracks and the nurse seemed to be in a hurry, so I didn't want to press her. The stool kit didn't have any specific instructions on it, but I assumed the two containers that had fluid in it were not to be touched/opened. That was my bad, and something I should have clarified on my own accord, too.
Thanks!
posted by dubious_dude at 11:26 AM on April 8 [4 favorites]
I called Member Services and left a complaint. Not seeking monetary compensation as "recourse", but yes, a complaint is a good idea, and something that I did. If anything, it'll improve things for next time.
I like the idea of a simple printout with key issues and needs. Will try that moving forward.
What made me angry is that Kaiser continues to advertise their services as integrated, all-in-one. The Urgent Care (this wasn't a hospital/ER, it was a Kaiser-run/owned Urgent Care) staff should have seen my chart, seen that I'm a cancer patient, coordinated care with my oncologist, and part of that was ensuring the stool sample was properly collected. Kaiser sells its services as "coordinated care", but this was not it.
I wasn't denied interpreters — they had a VRI (virtual interpreter) machine at the ready. It's just that the nurse handed me the stool kit and we gestured. Seemed simple enough, but too bad it wasn't a situation where communication went effectively. In hindsight, perhaps I should have insisted on utilizing the VRI machine to be completely clear, but things fell through the cracks and the nurse seemed to be in a hurry, so I didn't want to press her. The stool kit didn't have any specific instructions on it, but I assumed the two containers that had fluid in it were not to be touched/opened. That was my bad, and something I should have clarified on my own accord, too.
Thanks!
posted by dubious_dude at 11:26 AM on April 8 [4 favorites]
I’m not sure if this is still a problem for you, but it sounds like your oncologist gave you the impression that this is a huge long-term problem when at worst it’s going to result in one more episode you could have avoided.
If that is your concern, can you send your oncologist a message through the portal or another way that just says hey I got the impression that the missed stool sample could have very dangerous long-term repercussions, and I’m really worried about it. Am I understanding you correctly?
I agree that this doesn’t sound like a disaster, that the worst case scenario is one more episode, in which case you would know to get to the ER immediately if you get similar symptoms.
Not discounting your feelings. It sounds very frustrating. But as your fellow cancer patient, I’d say let the doc know if you’re feeling freaked out by something they said. Miscommunication with doctors happens, but if you have a good oncologist, there’s usually a way to clear that up.
I hope you’re able to continue your immunotherapy.
posted by FencingGal at 12:22 PM on April 8 [2 favorites]
If that is your concern, can you send your oncologist a message through the portal or another way that just says hey I got the impression that the missed stool sample could have very dangerous long-term repercussions, and I’m really worried about it. Am I understanding you correctly?
I agree that this doesn’t sound like a disaster, that the worst case scenario is one more episode, in which case you would know to get to the ER immediately if you get similar symptoms.
Not discounting your feelings. It sounds very frustrating. But as your fellow cancer patient, I’d say let the doc know if you’re feeling freaked out by something they said. Miscommunication with doctors happens, but if you have a good oncologist, there’s usually a way to clear that up.
I hope you’re able to continue your immunotherapy.
posted by FencingGal at 12:22 PM on April 8 [2 favorites]
Your state / city department of public health also investigate complaints against health care facilities and have online reporting forms.
Here is the thing, your providers are trained to use the appropriate interpreter every single time even if it is inconvenient or takes time and even if you make do because of exactly this reason. Exactly. This. Reason. There are trainings every year on this. I just got reminded of this last week at my place of employment. Everyone deserves the basic service of accurate communication in the health care setting in which little details can be critical.
Key words to use if you chose to make a report is that the lack of use of the interpreter meant that you didn't get results and it resulted in a delay in care. You were unable to follow up in xyz ways. Your oncologist was unable to use the results to recommend a course of action.
If you need additional help and want to go this route, message me. I've written quite a few of these over my career for various reasons and 0 percent mind doing another one.
Your public health department will vary in how seriously they take the complaint and if they investigate it or not compared to the one I have worked with. But it is an option.
posted by AlexiaSky at 6:36 PM on April 8 [1 favorite]
Here is the thing, your providers are trained to use the appropriate interpreter every single time even if it is inconvenient or takes time and even if you make do because of exactly this reason. Exactly. This. Reason. There are trainings every year on this. I just got reminded of this last week at my place of employment. Everyone deserves the basic service of accurate communication in the health care setting in which little details can be critical.
Key words to use if you chose to make a report is that the lack of use of the interpreter meant that you didn't get results and it resulted in a delay in care. You were unable to follow up in xyz ways. Your oncologist was unable to use the results to recommend a course of action.
If you need additional help and want to go this route, message me. I've written quite a few of these over my career for various reasons and 0 percent mind doing another one.
Your public health department will vary in how seriously they take the complaint and if they investigate it or not compared to the one I have worked with. But it is an option.
posted by AlexiaSky at 6:36 PM on April 8 [1 favorite]
I googled "Kaiser ombudsman" and it led me here: https://healthy.kaiserpermanente.org/pages/quality-safety/report-concerns. I also found a number for Kaiser’s Expedited Review department at 1-888-987-7247 (toll free) or 711 (toll-free TTY for the hearing/speech impaired), 8 a.m. to 5:30 p.m., 7 days a week.
If you have a cell phone, there are apps that can transcribe speech. If you're in a situation like this again, perhaps you could use one to transcribe what the nurse is saying so you can understand her. Also, I'd suggest buying some adult diapers as a just-in-case, and if this happens again heading directly for your tub or shower so you can let all the awfulness happen there and simplify the cleanup as much as possible. (Perhaps these are ideas you already use or they wouldn't work for you, for whatever reason. But I figured it couldn't hurt to put them out there.)
posted by Ursula Hitler at 6:55 PM on April 8 [1 favorite]
If you have a cell phone, there are apps that can transcribe speech. If you're in a situation like this again, perhaps you could use one to transcribe what the nurse is saying so you can understand her. Also, I'd suggest buying some adult diapers as a just-in-case, and if this happens again heading directly for your tub or shower so you can let all the awfulness happen there and simplify the cleanup as much as possible. (Perhaps these are ideas you already use or they wouldn't work for you, for whatever reason. But I figured it couldn't hurt to put them out there.)
posted by Ursula Hitler at 6:55 PM on April 8 [1 favorite]
You should make a complaint via ombudsman AND put the pertinent facts as dry as possible in Yelp and Google reviews (like, "staff is incapable of providing even common-sense disability accommodation so if you are Deaf do not go there alone"), but do not do this in anticipation that anyone will respond or fix it or make you feel better. For legal reasons, they won't respond. There may be enough internal static created that they don't fuck up like that in the future, but expect institutional memory to be extremely short in case you do ever have to return.
I'm sorry this happened to you. There is absolutely zero reason you couldn't have been given written instructions for the test rather than gestures. They could have typed it onto your phone, even, if they don't own printers and don't know how to write. It is absolutely enraging.
But send your complaints out into the void and then focus on what you need to do next. As a woman and therefore routinely put on the "go away and come back if it happens again" carousel, on your next treatment I would suggest limiting your diet to the lowest-possible-risk foods (possibly also avoiding common auto-immune sensitivities like dairy or non-shelf-stable wheat products that can mold, because some people do report having extra sensitivity from biologics), no restaurant food, no deli meat, no raw veg or fruit if it can't be peeled. Remove the question of food poisoning as much as possible - if that means rice, applesauce, Progresso soup and frozen dinners for 4-5 days, just declare you're doing it For Science and it'll be over soon.
Hopefully it's just a mundane glitch and you can get that locked down during your next treatment. Do plan for the worst - log everything, use chux pads where you sit/sleep (or use disposable adult pants, which keeps your clothes from getting soiled), try not to puke unless you're seated on the toilet with a gallon ziploc to yark into. I hope you don't need any of that, and I hope you do get some kind of satisfaction despite the very low odds there will be any response at all, but most of all I hope it's smooth sailing from here.
posted by Lyn Never at 1:37 PM on April 9
I'm sorry this happened to you. There is absolutely zero reason you couldn't have been given written instructions for the test rather than gestures. They could have typed it onto your phone, even, if they don't own printers and don't know how to write. It is absolutely enraging.
But send your complaints out into the void and then focus on what you need to do next. As a woman and therefore routinely put on the "go away and come back if it happens again" carousel, on your next treatment I would suggest limiting your diet to the lowest-possible-risk foods (possibly also avoiding common auto-immune sensitivities like dairy or non-shelf-stable wheat products that can mold, because some people do report having extra sensitivity from biologics), no restaurant food, no deli meat, no raw veg or fruit if it can't be peeled. Remove the question of food poisoning as much as possible - if that means rice, applesauce, Progresso soup and frozen dinners for 4-5 days, just declare you're doing it For Science and it'll be over soon.
Hopefully it's just a mundane glitch and you can get that locked down during your next treatment. Do plan for the worst - log everything, use chux pads where you sit/sleep (or use disposable adult pants, which keeps your clothes from getting soiled), try not to puke unless you're seated on the toilet with a gallon ziploc to yark into. I hope you don't need any of that, and I hope you do get some kind of satisfaction despite the very low odds there will be any response at all, but most of all I hope it's smooth sailing from here.
posted by Lyn Never at 1:37 PM on April 9
Response by poster: An update for any of you who happen to read this:
I got a callback from the manager at Urgent Care, who apologized profusely and acknowledged that "Kaiser had failed you". She said nurses were required to utilize VRI, even for common procedures, and that she would track down the nurse who gave me the stool kit and give her the appropriate feedback. She was very emphatic and understanding. I now consider this matter resolved. Thanks!
posted by dubious_dude at 10:46 AM on April 10 [2 favorites]
I got a callback from the manager at Urgent Care, who apologized profusely and acknowledged that "Kaiser had failed you". She said nurses were required to utilize VRI, even for common procedures, and that she would track down the nurse who gave me the stool kit and give her the appropriate feedback. She was very emphatic and understanding. I now consider this matter resolved. Thanks!
posted by dubious_dude at 10:46 AM on April 10 [2 favorites]
Can you ask healthcare providers to use text-to-speech to dictate their instructions into your phone, look them over, make corrections as needed, and then hand you the phone? (And you can thus save the instructions to refer to later). Voice-to-text technology exists and is easy to use. It seems risky to rely on gestures for medical advice. As long as you're conscious enough to read, you'll get much further if they type or dictate clear instructions to you.
posted by nouvelle-personne at 1:39 PM on April 10
posted by nouvelle-personne at 1:39 PM on April 10
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(a) It is a failure on their part not to have written or video instructions for common tests (which I imagine this is) available in the ER. Ad-hoc solutions to communications problems due to disability are bound to have breakdowns, so it's best whenever possible to have systemic solutions worked out in advance. It would be a good idea for to write to their member services about this.
(I'm not blaming you, because you were in the ER feeling like hammered dogshit, obviously, but as practical advice: next time, try googling if you're unsure. If what you see raises questions, then go back to the staff.)
(b) This failure on their part, though, does not have a big impact on your future. If your issues recur post-immunotherapy, you can get the test done then, and if it suggests that the immunotherapy is the cause of the reaction, then you can determine whether to stop (it doesn't have to keep happening again and again leading to hospitalization...you use the information to decide what the best course of action is!). If they don't, you won't. Either way, unless not discontinuing the immunotherapy instantly will cause you serious damage (doesn't sound like it), the "big impact" is independent of whether this test happened or not. That is, the big impact is based on your body's reaction to the immunotherapy, which the test might have helped measure, but would not actually have affected.
Please, talk to a therapist. The prospect of maybe having to give up the immunotherapy must be terrifying. Find some other way to deal with the big awful emotions you are so naturally feeling than turning them into interpersonal conflict that prolongs your acute moments of misery.
posted by praemunire at 8:36 AM on April 8 [13 favorites]