Medical Referrals

[Lecka]

I feel like sometimes medical referrals are given that are obviously not needed, and I feel fine about declining referrals I think are extremely unlikely to provide any helpful information.  
 

I am helping another person manage their medical appointments, and helping with transportation.  
 

Tomorrow morning I’m taking them for a referral I privately think is a total and complete waste of time.  
 

I haven’t said anything because, first, I’m not totally sure it’s a complete waste of time.  Two, it seems inappropriate.  Three, the other person feels like their concern is being taken seriously.  
 

I am wondering if most people just do all the referrals they are recommended?  Or pick and choose?  Ask more questions?

 

I have not asked “skeptical” questions because it’s not my appointment, and the other person is not skeptical.  So, I don’t know what would happen if someone did say something questioning the necessity of the referral.  
 

For myself I feel like I’ve said “skeptical” things and sometimes I get an explanation that is basically “yes you should do this” and sometimes I get more of an “it’s up to you” vibe.  
 

I just question if there is some conventional wisdom, for this, and what it is, I don’t feel like I really know.  

[rebcoola]

I have never had the experience of getting an unneeded referral. Usually we have to fight to get the referrals we desperately need

[Kassia]

My PCP refers me to specialists for everything.  I think one time she had about six referrals for me to different specialists.  There's no way I can afford to go to all of these doctors and most of the time it's just a waste.  Sometimes I wonder if that's all PCPs can do other than check for things like sinus/ear infections, flu, strep, etc.  

[Amethyst]

I’m skeptical of other people’s referrals all the time. I rarely do doctors (full disclosure: dh is my dr) cuz I’m fortunately in good health. But secretly, with my mouth shut, I think people go to drs and specialists waaayy too often. 

[Bambam]

I expressed a concern about a medical issue with one of my kids. Doctor asked questions, told me she could refer us to specialist, testing (not fun) would be done, and would result in a definite diagnosis, but there was nothing to be done except continue what we had already been doing.  So definitely not interested in that, so we passed. But when there were concerns that something else medically might be an issue, we did do the referral appointments, so sometimes yes, sometimes no.

And sometimes for those who tend to worry, going to that referral appointment and getting that additional feedback helps with that tendency to worry about whatever-that-was.  I have a relative like that, and really going to the all the referrals is beneficial to them due to that worrying tendency - even if nothing is found/determined medically, they feel better about the situation. 

Edited October 26, 2023 by Bambam

[Pawz4me]

I don't recall any of us ever getting a referral that I didn't think was one hundred percent needed. But we also don't go to the doctor for every little sniffle or ache. 

[Katy]

Every time I see someone question this I think of the people I know whose concerns were brushed off, or worse dismissed due to “gaining weight” when in reality they had serious medical conditions like cancer that should have been caught when early but instead wasn’t diagnosed until late-stage. And I cannot explain well enough that sometimes “nothing” ie: vague inflammatory and autoimmune conditions that aren’t bad enough to kill you can feel worse than the things that can kill you. So in general, don’t judge. Seriously, your time for health conditions will come. 

[TheReader]

We have done an "unnecessary" referral once, when we were hoping that specialist *would* be the answer, even though we were pretty sure it was something else.  It was the something else, and the specialist we saw first told us that, sympathized with us greatly that he could not help us, and did not end up charging for the visit (I think b/c he could see how very......overwhelmed? terrified? hopeless? all three??....that I felt). I would have gladly paid him anyway, just to have ruled out the other stuff.  I mean, I didn't *like* the answer, but it was good to know. 

 

[Ottakee]

I have that now with my mom who is 78 and in a power wheelchair.

she just got out of the hospital with a blood infection.  Hospital discharge suggests gall bladder surgery, heart ultrasound and thyroid ultrasound.

we will discuss it with her primary care doctor but even if heart and thyroid tests showed the need for surgery she would not do it…..so why go.

The referral to the surgeon is iffy.

we will see what her primary says.

[itsheresomewhere]

I have seen that.  Sometimes it is for insurance to cover something that really a primary care could order first but insurance won’t pay unless the specialist orders the same tests.  And sometimes I think it is due to primary care doctor either afraid to handle things they used to or their insurance won’t allow them.  
 

We don’t need referrals with our insurance and I am so glad.  PCP’s here are rare that see anyone sick ( tell you to go to urgent care instead) or have such long waits.  A specialist for us gets us in faster. 

Edited October 27, 2023 by itsheresomewhere

[TravelingChris]

I go to a ,lot of specialists. I am Ms. autoimmune and Ms. Zebra.  I have had to have tests done that ended up just confirming my suspicions that the. symptom was autoimmune but the things they were ruling out were congestive heart failure, failing kidneys, and other very serious conditions. I was happy that those conditions were ruled out.

[kathyl]

I'm never quite sure what to do about referrals.  After I finished cancer treatments, they gave me all kinds of referrals.  Scans of liver and pancreas, colonoscopy, dermatology, mammogram, and so on.   I did all of them.  Dh was still working then, and it was all covered by his insurance.  No problems on any of them.  And I still have routine gyn/onc checkups on top of all that.

When Covid hit, all checkups got cancelled so it's been a few years since I had some of the referral checks.  What I'm thinking now is that I'll just rotate things.  I have to get another referral from my gyn/onc to do any of them since it's been so long.  Maybe I'll just ask him Tuesday when I go. 

Honestly, the ones I'm sure I'll keep up to date are the gyn/onc and probably the dermatologist.  I keep running into people who have, or had, skin cancer (melanoma) around here.  I know the UV index is sky high most of the year here.  And I have light skin.

The rest I'm thinking I'll rotate through more slowly unless there's a problem.  Although, I can definitely see Katy's point above because I almost brushed off the gyn's offer to refer me to a gyn/onc.  If he hadn't had that 'I'm dead serious about this' look on his face, I might not have gone because I didn't feel sick, wasn't in pain, etc.  He probably saved my life ...

I just get so tired of being poked and prodded.  And I loathe the scan machine that is about the size of a coffin.  If I wasn't claustrophobic before, I sure am now when I think of having that scan done again.  It's the one where you have to breathe, hold your breath, etc.  I hate it. 

Anyway, I'll be watching this thread.

  

[kathyl]

8 minutes ago, TravelingChris said:

I go to a ,lot of specialists. I am Ms. autoimmune and Ms. Zebra.  I have had to have tests done that ended up just confirming my suspicions that the. symptom was autoimmune but the things they were ruling out were congestive heart failure, failing kidneys, and other very serious conditions. I was happy that those conditions were ruled out.

Maybe I'll take this approach.  It's fantastic when things are ruled out.  I always dread my routine gyn/onc checkups, but the second he's done and says everything looks good, I'm elated.

[SKL]

It's up to the patient (or patent's parent / person with medical POA).

I've ignored referrals, and I've requested referrals.  If I feel skeptical, I'll do some research and decide.  Sometimes I end up trying a few other things and then going back to the original advice in the end.

[kbutton]

Mixed bag but mostly positive. Referrals help greatly with coordination of care. Even the referrals that feel routine are informative. 

[Alice]

3 hours ago, Lecka said:

I feel like sometimes medical referrals are given that are obviously not needed, and I feel fine about declining referrals I think are extremely unlikely to provide any helpful information.  
 

I am helping another person manage their medical appointments, and helping with transportation.  
 

Tomorrow morning I’m taking them for a referral I privately think is a total and complete waste of time.  
 

I haven’t said anything because, first, I’m not totally sure it’s a complete waste of time.  Two, it seems inappropriate.  Three, the other person feels like their concern is being taken seriously.  
 

I am wondering if most people just do all the referrals they are recommended?  Or pick and choose?  Ask more questions?

 

I have not asked “skeptical” questions because it’s not my appointment, and the other person is not skeptical.  So, I don’t know what would happen if someone did say something questioning the necessity of the referral.  
 

For myself I feel like I’ve said “skeptical” things and sometimes I get an explanation that is basically “yes you should do this” and sometimes I get more of an “it’s up to you” vibe.  
 

I just question if there is some conventional wisdom, for this, and what it is, I don’t feel like I really know.  

I'm a pediatrician which is a very different world than adult medicine. 

I think sometimes doctors do refer for CYA medico-legal reasons. My personal opinion is that is more typical when the doctor knows the patient less well. So I sometimes see someone who has gone to the ER or Urgent Care and been told to follow up with a bunch of specialists. 

Sometime it is insurance reasons, they will cover certain things if prescribed/recommended by a specialist easier than by a primary doctor. I had a patient who needed Synagis (RSV shot for babies) a few years ago and they had denied it. I was on the phone doing the doctor-to-doctor appeal and they kept denying it but then I mentioned that the baby saw a cardiologist and they said if the cardiologist would recommend it they would cover it. They already knew the baby had a cardiac defect, they just wouldn't accept my opinion that the Synagis was needed, they needed a letter from Cardiology. I can think of other examples. 

Sometimes it's patient preference. I have definitely referred patients who didn't think needed to see someone else but they either asked to or I could tell that they would accept the diagnosis better from a specialist. A classic example is intoeing in pediatrics, it is almost never recommended to do anything. Most of the time I can explain why and the parent is satisfied. But occasionally someone just won't accept that and wants to see a specialist. I know 100% that the specialist will say the same thing, but it's fine if they want to go and see the orthopedist and hear it from them. 

I'm not sure if by referrals you meant preventative care or tests, which is what it seems like some people meant in the thread. There are different reasons for those than for referring to a specialist, in my opinion. Depending on the test it's harder to tell if it is truly necessary or not.

[Tenaj]

My worst referral story was for my third child who was about 15 at the time.  Most of the males in my family are tall and skinny.  Pediatrician decides we need to see a cardiologist to rule out Marfans.  Absolutely no family history but I dutifully take him.  $350 for the specialist to laugh and tell us that if there's no family history of early death then it's not Marfans (this was about 12 years ago).  

We recently had another kid have similar traits who went for genetic testing because I guess they have now discovered that sometimes gene mutations can cause Marfans to pop up.  That referral didn't cost me very much at all but the results were hilarious because something got messed up and the results showed a different problem but the doctor was puzzled because that particular gene trait causes death to the fetus.  Weird.

[marbel]

One of my kids went through a mysterious illness that resulted in lots of referrals to specialists. Finally a neurologist figured out the problem, but there were so many doctors and tests. I was glad that the doctors were open to referring once they were stumped. Just bad luck that we saw so many before finding the right one. 

I do think some people see too many doctors for  no reason and they can be a drain on resources. But I wouldn't want anyone limiting my ability to seek medical care for myself or my loved ones because the referral seemed unnecessary to them. 

[Lecka]

I am glad I asked, because I am obviously far on the skeptical side, and not average.  I thought I might be average, so it’s good to know.  
 

I also feel like there were things I was missing context on for the referral process, that are pertinent here.  
 

This is something where primary care referred to a specialist, and the specialist ordered a test.  Now there will be another appointment with the specialist to get the results of the test.  
 

I think it’s going to provide major peace of mind.  

Edited October 27, 2023 by Lecka

[kbutton]

5 hours ago, Tenaj said:

My worst referral story was for my third child who was about 15 at the time.  Most of the males in my family are tall and skinny.  Pediatrician decides we need to see a cardiologist to rule out Marfans.  Absolutely no family history but I dutifully take him.  $350 for the specialist to laugh and tell us that if there's no family history of early death then it's not Marfans (this was about 12 years ago).  

We recently had another kid have similar traits who went for genetic testing because I guess they have now discovered that sometimes gene mutations can cause Marfans to pop up.  That referral didn't cost me very much at all but the results were hilarious because something got messed up and the results showed a different problem but the doctor was puzzled because that particular gene trait causes death to the fetus.  Weird.

And this is why a referral to someone who knows what they are talking about is necessary. Cardiologists are not generalists either, but they Do Not Stay in Their Lane. They need to refer and defer a lot more often!!!

My son is one of the 25% with a spontaneous mutation. We got in the door with a family history of aneurysms. It’s not supposed to take that much effort, and if he didn’t have that family history, I can only hope that he would’ve gotten as much scrutiny as he did.

We had to ask for the referral, and then we had to have the referral transferred to the correct department—the wait for the connective tissue clinic was much longer than for cardiac genetics.

Part of the issue in healthcare is that there is little to no meaningful feedback. If someone feels an appointment is useless, the doctor might not ever know.

We’ve gotten much better at speaking up and demonstrating to providers that not everyone encounters the healthcare system in a way that they expect, and when that happens, balls get dropped.

We’ve seen big changes to how things are done at our specialist clinics even in recent months as they take in feedback (obviously not just ours).

The hospital system we use is not perfect, but it has a much more robust department for handling parent complaints and feedback than most places do.

I don’t know if any adult hospitals that make nearly this effort.

[Tenaj]

On 10/27/2023 at 1:02 PM, kbutton said:

And this is why a referral to someone who knows what they are talking about is necessary. Cardiologists are not generalists either, but they Do Not Stay in Their Lane. They need to refer and defer a lot more often!!!

My son is one of the 25% with a spontaneous mutation. We got in the door with a family history of aneurysms. It’s not supposed to take that much effort, and if he didn’t have that family history, I can only hope that he would’ve gotten as much scrutiny as he did.

We had to ask for the referral, and then we had to have the referral transferred to the correct department—the wait for the connective tissue clinic was much longer than for cardiac genetics.

Part of the issue in healthcare is that there is little to no meaningful feedback. If someone feels an appointment is useless, the doctor might not ever know.

We’ve gotten much better at speaking up and demonstrating to providers that not everyone encounters the healthcare system in a way that they expect, and when that happens, balls get dropped.

We’ve seen big changes to how things are done at our specialist clinics even in recent months as they take in feedback (obviously not just ours).

The hospital system we use is not perfect, but it has a much more robust department for handling parent complaints and feedback than most places do.

I don’t know if any adult hospitals that make nearly this effort.

I do think these types of referrals have improved over the years.  What made me mad with the first adventure was how much it cost and that it seemed completely unnecessary when the cardiologist literally laughed in our faces and made fun of our pediatrician for referring us.  So unprofessional and irritating.  And at that time, I'm guessing that the knowledge of the gene mutation popping up in families wasn't well-known.  The second referral was wonderful because they actually had a speciality area of the children's hospital to address the issue,  they explained exactly what was going on and most importantly were respectful of our pediatrician and us through the process.  The gene test came back negative for Marfans but had the weird other gene thing pop up.

I'm sitting here looking at my youngest boy who is painfully thin, has long arms, skinny wrists and though he isn't as tall as some of his brothers he is heading the same way so I'll probably end up at the genetics clinic again within the next few months after his physical  but I know it will be a much more pleasant experience than that first cardiologist!

[kbutton]

2 hours ago, Tenaj said:

What made me mad with the first adventure was how much it cost and that it seemed completely unnecessary when the cardiologist literally laughed in our faces and made fun of our pediatrician for referring us.  So unprofessional and irritating.  And at that time, I'm guessing that the knowledge of the gene mutation popping up in families wasn't well-known.

That is very unprofessional! He needs to be encouraging the referrals. Being missed is a death sentence—average untreated life expectancy is age 40. Aneurysms are common in the general population, and there are no common outward signs when it’s not related to a connective tissue disorder.

I don’t know how long we’ve had data on spontaneous mutations, but plenty of doctors ignore it.

I have a general grudge against cardiologists though—I’ve met too many who are not nice or who would argue over easily accessible information that they are not up-to-date on. It took me two years to prod a family member (not with a CTD but with an aneurysm) to get evidence-based care because his first cardiologist was an idiot.