Just Sharing - my medical advocacy challenges

[disneysteve]

RN here, I have been an advocate for many family members, as has my SiL, who is a pharmacist.
It is good to have a medical person help, however, I would argue that any other family member can advocate just as well.

I wish that were true but it simply isn't. Someone without considerable medical knowledge can definitely be helpful, but there's no way they'd catch the sorts of issues and errors that a trained professional like you or I would. We know to ask questions that a lay person just wouldn't know to ask.


My wife is an intelligent woman and knows a good bit about medical stuff from her own experiences and being married to a doctor for 31 years. Still, numerous times when I've been with her in the hospital or at a doctor's office, I asked a question and she said she never would have thought to ask about that. I knew to ask because I'm a doctor and I know stuff that the average person just doesn't.


Obviously, the problem is that most people don't have a doctor who can be at their side when they're in the hospital and going to doctor visits.

 

[Flyfish1]

I wish that were true but it simply isn't. Someone without considerable medical knowledge can definitely be helpful, but there's no way they'd catch the sorts of issues and errors that a trained professional like you or I would. We know to ask questions that a lay person just wouldn't know to ask.


My wife is an intelligent woman and knows a good bit about medical stuff from her own experiences and being married to a doctor for 31 years. Still, numerous times when I've been with her in the hospital or at a doctor's office, I asked a question and she said she never would have thought to ask about that. I knew to ask because I'm a doctor and I know stuff that the average person just doesn't.


Obviously, the problem is that most people don't have a doctor who can be at their side when they're in the hospital and going to doctor visits.

Thanks for your service to your community as well.
I don't even want to get into all the coding nonsense, the non interfacing EHR systems , the myriad of Radiology programs to view images - without an industry standard interface...ugghh. Because, that just is a rehash of the stress , anxiety and burn out that drove me away from medicine in the first place. My Hospital system that I left had an inpatient EHR, that didn't interface with the outpatient EHR, and the ER used their own system that required separate user login. So I could have a patient in my office the day after discharge, could not see their labs, the hospital notes or any ER notes without logging out of my EHR and into two other systems. OK - I have to stop ...I'm getting annoyed again.

Anyways, regarding the concept of advocacy - I really would be willing to help some people, local I guess, don't even need a fee, but then the second half of the practice of medicine gives me pause: the legal implications. Would probably need some strong legal contract before helping...what a shame.
Time for more coffee...

 

[target2019]

It does help to be more knowledgeable about medical terms, billing codes, and so on. My wife is into her 40th year, and I can see that she is presenting differently to all of the medical people she meets.

I had to see a new doc for sign-off on eye surgery form. This is completely a paper-pushing CYA exercise. When the doctor gave back the form without signature, I knew it would be a problem. I was getting no understanding on this from the front desk.

My wife stepped up and a different person got involved. The paper was walked back to the doctor for his signature. This is a very simple matter, but you can see how an advocate helps out. Then it was time for another signature, for the other eye., 30 days later. My wife showed up in her work scrubs from a local hospital, and there was small talk about that employer. Oh, how do you like the job, and so on.

It helps to have the right personality, too.

 

[EastWest Gal]

Wow - that's rare up here (Midwest). Even 20 minutes is super rare. OK..even 5 minutes is rare.

Seems I generally get less than 5 minutes with my provider - PCP, Specialist, etc. And then get billed for either THE most complex CPT code or the second most complex. I just complained to my Orthopedic office about getting billed for second highest complexity visit when I was literally seen for less than 5 minutes. Reading the AMA standards for that CPT code, Doc was supposed to spend half an hour - half or more of which was supposed to be seeing me. Didn't happen, so he clearly chose the billing code that allowed him to charge more. Unfortunately, I have an "Affordable" Care Act (ACA) plan with a $7K/yr deductible. So have to pay the whole thing, even though he seriously over-charged me with the inappropriate CPT code. But if I push it too hard, they'll probably just tell me I'm being too much of a PITA and to find another doctor. Worse, I may need this guy to do a TKR on me at some point, so don't want to irritate him too badly...sigh.

My neighbor is a retired Family Doc (albeit, originally from out of state). I told him about my recent experience and without hesitating he replied "sounds like he's engaged in some billing fraud". Great...

Your neighbor was right. I saw the same thing with my dad and the cardiologist office. He put the stethoscope to dad’s chest through his shirt for 10 seconds, didn’t even check his lungs or his legs for edema. Charged the highest level visit. That’s Medicare fraud. But good luck reporting it and getting any action.

A month before I retired I came on duty for my 12 hour shift. My colleague had admitted a 4 year old the night before for vomiting, dehydration, and abnormal electrolytes and treated him appropriately. The problem was, he didn’t have an intestinal bug.

At morning sign out I noticed his behavior was very off, even for an autistic child. He was lethargic and combative and very light sensitive. I spent several minutes trying to examine him; his father was not clued in on the behavior being very abnormal, but red flashing lights in my mind said “increased intracranial pressure”. Got him to the CT scanner in 10 minutes, and from there anesthesiology and I collaborated on care of reducing the brain swelling around a mass while arranging a team to come get him from the Children’s hospital a few minutes away. His brain abscess was surgically treated on arrival and he went home perfectly fine 5 days later.

What if I had not observed and examined him immediately and just treated his numbers? After all, my colleague had admitted him 5 hours earlier. He would have died that day.

The best thing I ever did in my career was go to a large top notch medical school and train in a system with tons of specialists as well as a level 1 trauma center and do an extra year as chief resident, caring for the patients with the most unusual or severe problems. And never forgot the importance of getting a good history and physical and being present to the child in front of me.

I felt the burnout of watching so many colleagues do sloppy work and over bill just enough to get away with it. It occurred in the office and the hospital. It affected my bottom line but I never cheated for money. The hard part was that the docs that do this don’t seem to realize that they hurt all of us, patients, their partners, and society as a whole with the crazy expense that healthcare is these days.

There’s my rant.

 

[Rianne]

Wow - that's rare up here (Midwest). Even 20 minutes is super rare. OK..even 5 minutes is rare.

Seems I generally get less than 5 minutes with my provider - PCP, Specialist, etc. And then get billed for either THE most complex CPT code or the second most complex. I just complained to my Orthopedic office about getting billed for second highest complexity visit when I was literally seen for less than 5 minutes. Reading the AMA standards for that CPT code, Doc was supposed to spend half an hour - half or more of which was supposed to be seeing me. Didn't happen, so he clearly chose the billing code that allowed him to charge more. Unfortunately, I have an "Affordable" Care Act (ACA) plan with a $7K/yr deductible. So have to pay the whole thing, even though he seriously over-charged me with the inappropriate CPT code. But if I push it too hard, they'll probably just tell me I'm being too much of a PITA and to find another doctor. Worse, I may need this guy to do a TKR on me at some point, so don't want to irritate him too badly...sigh.

My neighbor is a retired Family Doc (albeit, originally from out of state). I told him about my recent experience and without hesitating he replied "sounds like he's engaged in some billing fraud". Great...

What does a patient do? Over the years, I heard the term "Gold Standard" for treatment or surgery. Gold for who? The Dr or patient? We're given the gift of Google. Many Drs say to stay off Google and there is a lot of bad information there. But if you search for the best sites, NIH studies, research results, and medical forums (Mayo Clinic has a good one but specific to certain diseases) you will find good information. Fortunately, I'm RE so I have the time.

I was misdiagnosed (mentioned in other posts) with ADPKD. A polycystic kidney disease that has me on dialysis or a kidney transplant by the time I'm 70. This dx is in my records. I recently went to Mayo Clinic to a highly specialized Dr who in about 20 minutes said you do not have this disease and proceeded to show me my CT scan, and is doing a genetic test to prove it. My local nephrologist did nothing of the sort. He simply decided I had this disease b/c I have a few cysts on my kidneys. If I had medical underwriting done for insurance I would be denied immediately. Those are the consequences we all face with our medical system. I'm not saying my local Neph is an evil person. Actually, the reviews about him are stellar. Why? He's nice, funny, easy to talk to, and gives you a false sense of security. I saw him for 6 years, twice a year. We would chat about other topics, he would say with a smile "Don't worry, you'll live to a 100!" Be super positive. I also found out he has an ownership stake in the local dialysis company Davita.

Ask questions, don't be shy or intimidated by any Dr. Search deeper. Talk to people. I'm not sure I believe in "do-it-yourself doctoring" because I don't understand human physiology, but I'm learning.

 

[disneysteve]

My wife showed up in her work scrubs from a local hospital, and there was small talk about that employer. Oh, how do you like the job, and so on.

Whenever we are at the hospital or a doctor's office, I always wear my hospital ID badge, even if we're at a place that isn't part of my system. I don't say anything unless asked, but just having that badge identifying me as a physician absolutely affects how things go. If nothing else, it lets people know that I understand stuff.


And it often does prompt conversation. Oh, you work for "XYZ" too. What do you do?

 

[Qs Laptop]

RN here, I have been an advocate for many family members, as has my SiL, who is a pharmacist.
It is good to have a medical person help, however, I would argue that any other family member can advocate just as well. Keep asking questions and pushing for answers, be willing to take to higher ups, medical/hospital boards, local congressperson, etc. depending on the issue.
The whole medical field can be very confusing and it is easy to get lost along the way.

I can confirm this. In fact, it's good to ask a lot of questions and sadly a necessity to take the tone of a defense lawyer and interrogate people as if they were on the witness stand. I do this tactfully but firmly and when I find an inconsistency I'm on it like a dog on a bone. I call it going into "Perry Mason mode". It's frustrating and exhausting but of utmost importance.

 

[frances]

I advocated for my mom as best I could, but like many of y'all I found that sometimes us non-medical people just flat out get ignored. I found that sometimes I HAD to be a complete and total "B" in addition to repeating myself DAILY and making sure I attended rounds when my mom was last hospitalized after open heart surgery last year.
It seemed like regardless of what was IN her chart, ON the white boards on the walls, or on the wrist bands it was for the most part ignored unless I was there to catch some of it and either ask for adjustments or try to prevent things I knew weren't going to help.

I've even been known to have doctors peer reviewed for their bad behavior; my point in bringing that up is if you see something that you KNOW is wrong challenge them. They aren't the end-all-be-all. When that happened they were discharging my 88 Y-o_ mom with a 102degree fever which ended up being a staph infection in a chemo port. They called the next day to say "oops, bring her back". We were on the way back anyway....

So long comment short - do what you gotta do and don't fear consequences. It's important.

 

[zippy2020]

Worth reading:
Who Employs Your Doctor? Increasingly, a Private Equity Firm.
A new study finds that private equity firms own more than half of all specialists in certain U.S. markets.
NY Times 10July2023

https://www.nytimes.com/2023/07/10/upshot/private-equity-doctors-offices.html?action=click&module=Well&pgtype=Homepage&section=Health

 

[catii]

Just remember that no one is as interested in your health, as you are!

I was deployed when DW self-diagnosed that her kidneys weren't working. PCP disagreed, but she stuck to her guns, & better testing proved her right! Her condition was so bad, that she was still being treated two months later when I returned, & she wouldn't have survived had she just followed his instructions.

 

[Katsmeow]

Several things...

Concierge Doctors We just moved to a new state. And, for many of the reasons stated here I think we will get a concierge doctor (probably MDVIP although not entirely decided on that). It won't solve the hospital problems if they occur but will solve the problem of being able to quickly see someone and to have adequate visit time. From my friend who has a concierge doctor she found that doctor also was good at sort of coordinating care with different specialists when her husband was ill. I sort of resent having to spend almost $2k a year per person for DH and I to get this. But the reality is the reality and I think it will help particularly in an area where he know no one and need good specialists.'

Getting taken seriously - I do think physicians and other medical personnel do have an advantage is advocacy and getting answers to questions and pointing out errors. I can't do anything about the fact I don't fit in that group. FWIW, I have found that two things have helped me. I have found that once doctors find out I am a retired attorney they treat me differently. Specifically, they treat me like an intelligent human being and are more engaged in conversation. They answer questions more fully. They go more into pros and cons of a particular approach. (Many years ago I had a doctor refused to treat me because I was an attorney but that was unusual.

The other thing that helps me is that I do a lot of research on any serious medical problem that I have. I come armed with questions. I try to give the approach as one where I am researching stuff so I can better understand what the doctor is telling me. I am not trying to BE the doctor. I pretty much accept mainstream medicine and don't go off on weird tangents. But I know that for many things in medicine there is more than one option or there are different factors that weigh on it. My favorite physicians have been the ones who have honestly seemed to enjoy answering my questions. I have found I get a better experience with doctors when I am engaging them in intelligent discussion.

Ask for what you want This is something I had to learn. Used to if I called into a doctor and was told the first appointment was in 3 months I just took that a face value. But, then one time I pushed back and said I really wanted in sooner because I was worried about X and then I was offered an appointment a month and a half earlier! Or sometimes, just calling back on a different day will work. Sometimes they give you instructions to do X and if I have researched that not everyone requires X then I ask and then the instructions are changed. Now, none of this always works. But, it is surprising to me how often just asking makes a difference.

 

[deserat]

Very interesting thread.

I'll echo the clinicians that having some type of background in healthcare helps. I am a biomedical-clinical engineer who has worked in or for hospitals for decades and with all types of clinicians. I *always* let that drop in a conversation...usually about the equipment they are using, the EHR, how devices do or do not integrate, etc. I ask a lot of questions and approach issues like I do a systems engineering problem....using their language many times.

For the most part, it does change their approach to me.

I currently live in Germany and must use the local healthcare system. There are very similar issues here as in the US. They've learned how to up code for insurance purposes because US insurance pays them much more than the state program or even the private plus up insurance the citizens can buy. One thing it did for me is ensure the head MDs see me and not the residents. Now, I know that doesn't necessarily mean they are the best clinicians, but it is interesting to have all of them swarming around me (had a bit of a stay in the hospital when here). I know from the locals here that is not the norm for them and they have huge access problems.

One thing that did not happen was a medication mishap. In the USA, we have a lot of technology and computers involved in healthcare. That is not the case here. The nurse knew how to take your blood pressure manually and pulse manually. They looked at you and talked with you. They know how to hang an IV bag and how gravity worked as well as how to make sure the medication was properly mixed or titrated. They were consistent in their techniques. They double checked the medications which they have you with a slip telling you what it was (in German for me). The pharmacies are very well managed and the people are very knowledgeable.

The biggest irony to me was the only technology in my room was the phone and TV. I did not have any monitoring on me and there were no patient monitors in the room. There were no infusion pumps. I was teaching a graduate course in clinical systems engineering for students at an American university online at the time and I know all the hospitals were stacked with technology and grappling with integration and EHRs.

I believe my care was just as effective had I gone to the American military hospital here. The difference was coordination after the fact, which is difficult *anywhere* when one transitions between systems or organizations. I work in integration and that is where many failures occur in many systems.

In my case, I had to be diligent and persistent. Luckily I found a specialist who is awesome. I will miss him when I move back. To be honest, it seems like the issue one has with an auto mechanic. If you can find one that is good and trustworthy, hang on to them tightly.

To the OP-yes, there is a need for advocacy -desperately because I suspect people in the system are overwhelmed with the system and you understand the system and can guide them. The system has also become very complex. And it is human beings running and working the system and humans are fallible.

I hope I can find some good care when I get back to the USA and have mentally penciled in concierge on top of insurance to make sure I at least can get some good information when making any decisions.

 

[Badger]

I just retired from almost 30 years as a Doctor. Within a few days of my retirement my Father had severe medical issues , was admitted to a corridor in a large hospital - apparently no beds available - discharged without full diagnosis. I was not involved - we arrived a few days later when he was scheduled for a diagnostic outpatient procedure - arrived in a very fragile and weak condition and told that his procedure had been cancelled. My parents were never notified.
I had the office head nurse on the phone in minutes and a couple of minutes later the Doc and I had a terse conversation where I pointed out the obvious error and that I had no qualms about moving this up to a Patient Care Advocate complaint. Needless to say things started happening very quickly - within 24 hrs he moved straight to a corrective procedure and is doing well. BTW - the Doc was very apologetic.

A couple weeks later my adult daughter shared what was going on with her health - and that the front office staff was not letting her book a follow up appt in a timely fashion due to a change in Doctor staffing. This left her incompletely diagnosed and not on treatment and with no chance of obtaining an apt. for 6 months. She tried to correct this on her own to no avail. The next day I fired off a firmly worded email to the appropriate complaint office at a major nationally ranked hospital system explaining my understanding of the legality of the situation. Low and behold by the end of the day she was given an appt. in a few days time.

Just felt like sharing these challenges. Maybe I have a role in helping others navigate the challenges and missteps that are inherent in our medical system. Maybe not. Not that I'm looking for work - I just seriously dislike medical run arounds and delays. Not to mention - I always looked forward to a good argument with hospital administration.

THANK YOU for posting this. I would like to see this as a "sticky" at the top of the posts for us to access for future reference.
I wish I had an advocate 12 years ago when I had a major injury to some spinal nerves and had to wait for 3 months just to see a surgeon and then more time to finally get treatment. Unfortunately too much time had passed. I was in excruciating pain for all that time so that I couldn't sleep for more than a couple of hours but only if drugged with opiates. After 3 surgeries within a year with the last fusing the lower back there is nothing else that can be done. The pain is less now but still a problem and my right leg is compromised for walking. I just have to live with it.

Cheers!

 

[frayne]

I understand the desire for some type of paid advocate system but then how long will it be until you need an advocate to get through to the paid advocate, to advocate for the patient. Our health care system is broken and the best advice is, don't get sick or be fortunate enough to have a medical professional in your family.

 

[retiredtillwepart]

My wife and I are in our early to mid eighties live independently with about six or seven Doctors each and ten prescriptions each and thankfully no Heart or Cancer issues. Getting access to Doctors has become problematic with so much consolidation and group practices with many loops to jump through. As a long time healthcare reform advocate I am aware of the issues like healthcare financing and how providers have difficulty navigating the many systems out there and have to learn how to game them to survive. A Single Payer system or Medicare For All can fix our broken healthcare system. I would direct those interested in this get involved with PNHP/Physicians for a National Health Program. I am a non Physician long time member.