Just Sharing - my medical advocacy challenges

[Flyfish1]

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.

 

[Closet_Gamer]

Good for you.

A couple years back DW was gravely ill in the hospital (she's fine now). Advocacy was a part-time job for 3 months.

 

[Rianne]

I had a 40-minute office visit with my PCP yesterday. 20 minutes is the allowed amount of time with a patient. Instead, we had an in-depth conversation about healthcare today. Truly eye-opening. One topic led to another. She also teaches medical students. The U of I medical school is collaborating with engineering students to find innovative ways to treat patients. The bottom line, our healthcare system is in trouble. Fewer medical students are able to get residency assignments. Places like Mayo Clinic and the big medical centers have benefactors and rich donation sources. Not so with the smaller community facilities. This a big problem facing average middle-class folks.

 

[Another Reader]

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.

Maybe you could help the Long Covid population - the folks with substantial, life-altering conditions due likely to persistent virus - who get little to no care in hospital. No communication between specialties, by the flow chart medicine (no flow chart for Long Covid), poor care and little relief. Must be psychological, discharge and refer inappropriately.

 

[FindingForward]

This is my #1 fear that keeps me up at night- I have caring family members, but none could advocate on my behalf: they're passive, easily intimidated by healthcare staff and go along with whatever office staff or hospital tells them. If mistreatment, negligence or just administrative confusion occurs, I can't count on them.

I wish there were reputable, knowledgeable "insiders" one could hire to be their medical advocate.

 

[walkinwood]

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.

Your knowledge would be beneficial to many here. A short tutorial that could be useful to get started if we experience the same issues that you did?

 

[grayv]

Fewer medical students are able to get residency assignments.

what have you heard? did the available residencies drop, or medschool graduates increase? or something else.




btw, I doubted the reporting a few years back, when i read that the Champaign medical school was closing for a while. turns out, it was. then re-started as a medical school with more tech.

 

[jollystomper]

Glad to see how you are helping. We are fortunate to have doctors in our family who do not hesitate to jump in when we encounter these types of situations. It is amazing - and sad, to a some degree, thinking of those who do not have this luxury - how quickly things start moving once they get involved.

 

[Rianne]

what have you heard? did the available residencies drop, or medschool graduates increase? or something else.




btw, I doubted the reporting a few years back, when i read that the Champaign medical school was closing for a while. turns out, it was. then re-started as a medical school with more tech.

Available residencies have dropped and medschool graduates increased. My PCP said training new DRs is very expensive and hospitals don't have the $ to accommodate all the new graduates.

Champaign med school is on a new trajectory. Innovation is key but they're finding out how very expensive it is to get new innovation approved and get investors. Will the investors get paid back and then some? One of her students (Engineering with MD degree) has invented a promising medical machine. The investment needed...$50M. She said these students are brilliant and want to help, but the expense of medicine is too much. Many large 5* healthcare systems do not take Medicaid. Thus leaving the burden on smaller community hospitals. The expertise and technology is not available and the smaller hospitals can't just send the patients to higher-quality systems.

 

[Teacher Terry]

I have been an advocate for both family and close friends without family. I don’t intimidate easily but I also don’t have a medical background.

 

[pacergal]

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.

 

[target2019]

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.

Thanks for signing up.

My wife has a lot of experience being an advocate for her parents and me.

 

[disneysteve]

As a fellow physician in my 31st year of practice, thank you for your years of service to your community.


I couldn't agree more with your post. The healthcare system is a disaster and it has only gotten worse as medicine has moved away from doctor-owned private practices to large conglomerates run by business people, not clinicians.


Something as basic as making an appointment now comes with a gauntlet of obstacles to navigate and many patients simply aren't equipped to deal with it. The endless phone trees, "access centers", and other barriers between the patient and the person they need to speak to are insane. Many patients simply give up out of frustration.



My wife has been going through some serious medical challenges the past 2 years and I've seen this first hand and I'm horrified. My mom also had 2 hospital stays in the past year with the same thing. Many things would have been done incorrectly or not at all had I not been at their bedside all day every day to correct them.


I could give dozens of examples but here is just one:
My mom was admitted through the ER. When she got to the floor, the nurse came in to give her meds. I asked what she was getting. One of the meds she was about to administer was one she had gotten 30 minutes earlier in the ER. The nurse had no idea. "Oh, we can't see what they did." Really? How is that possible with everything being in the EMR? And surely the ER nurse gave report to the floor nurse. I should add that I work in this hospital system so I know exactly how it operates. Had I not been there, she would have been double dosed.


Tons of other examples of things that could have gone terribly wrong had I not been there and had the knowledge and experience and contacts to keep things on track. More than once, I personally messaged one of the doctors to get something taken care of, but the average person doesn't have that kind of access.


Earlier this year, my wife went to see a cardiothoracic surgeon. He felt that she needed to see the neurosurgeon and said he would send over all of her information and that office would contact her to set up an appointment. She waited a week and heard nothing, so she called and was told that it could take a couple of weeks. She waited another week and called again and was told that she couldn't be seen because she hadn't had an MRI. She explained that she can't have MRIs because of retained metal in her body. A week later she called again and was told that since she already had seen a different doctor at another hospital she should just stick with them - but they were the ones that referred her over for another opinion.


Finally, I stepped in. I emailed the neurosurgeon directly and explained the situation and that we were getting a huge runaround just trying to make an appointment. He responded quickly, apologized, and she was scheduled a short time later. I doubt she would have ever successfully gotten an appointment had I not been able to bypass the whole system and contact the doctor myself. As it was, over a month went by between the time she was referred to him and the time she finally got scheduled for an appointment (which was another week or two after that). What should have taken 5 minutes took 4 weeks.

 

[aja8888]

Last November 2022, my DW went into the ER with a lung infection. She was long term COPD and had a host of other medical problems due to the COPD treatment over the years. She spent 3 weeks in the hospital and three weeks in a skilled nursing facility before she passed away from that bad infection (not Covid or pneumonia).

If I wasn't with her daily from 8:00 am until evening every day, she wouldn't have lasted as long as she did. I'm not going to get into the details about the medical missteps I stopped, but there were many of them in those 6 weeks.

 

[Sanstar]

When I met with my FIDO advisor in 2015 after retiring from a 40 year career in healthcare, he recommended a healthcare mutual fund because of the aging population. I agreed but after a couple years sold it. Reason: no one’s happy with our current system, no solutions in sight, other than increasing regulations which further drive up costs.

Several years before retiring the healthcare system I was part of initiated two full departments: patient satisfaction and regulatory compliance. Both needing directors, staff, admin support, ect. Our healthcare $ at work. System engineers may have been a better solution.

 

[badatmath]

Some folks here jumped on me when I said I tried to get a patient advocate involved for an out of state relative last year.

But in any case it was not a ton of help because they don't work weekends or holidays (this was around Xmas so had 2 major holidays) and they take I believe 48 hours to think about getting back to you. . .

The hospitalist called me and made it sound like patient was old and unimportant, the cardiologist was excellent and the remaining doctor did not call at all. The nurses gave me info on the wrong patient (he did not have angioplasty!). One of them told me if i cared about patient to just fly in - this is when we had hundreds of flight cancellations and I was concerned about being stuck and even less help. Not to mention I was recently out of hospital and not in great shape!

IDK it was not a good experience other than that patient did recover.

 

[kcowan]

It sounds like there is a need for an Advocates for Hire service! I would subscribe if there was one nearby.

 

[marko]

What a depressing and frightening thread! My recent surgery, pre and post op was perfectly timed and executed, no glitches or problems, but it sounds like I just got lucky!

 

[Sunset]

OP - Great that you could advocate.

While not having as much inside knowledge, I find even regular folks can help.
Example: DW was in the hospital some years back, I stayed in her room as much as possible. Good thing because one night an intern comes in and says from the test, they have found the problem is she has a large kidney stone. Problem is he was in the wrong room and wrong patient!
A drugged patient might not have caught it.

 

[bmcgonig]

As a fellow physician in my 31st year of practice, thank you for your years of service to your community.


I couldn't agree more with your post. The healthcare system is a disaster and it has only gotten worse as medicine has moved away from doctor-owned private practices to large conglomerates run by business people, not clinicians.


Something as basic as making an appointment now comes with a gauntlet of obstacles to navigate and many patients simply aren't equipped to deal with it. The endless phone trees, "access centers", and other barriers between the patient and the person they need to speak to are insane. Many patients simply give up out of frustration.



My wife has been going through some serious medical challenges the past 2 years and I've seen this first hand and I'm horrified. My mom also had 2 hospital stays in the past year with the same thing. Many things would have been done incorrectly or not at all had I not been at their bedside all day every day to correct them.


I could give dozens of examples but here is just one:
My mom was admitted through the ER. When she got to the floor, the nurse came in to give her meds. I asked what she was getting. One of the meds she was about to administer was one she had gotten 30 minutes earlier in the ER. The nurse had no idea. "Oh, we can't see what they did." Really? How is that possible with everything being in the EMR? And surely the ER nurse gave report to the floor nurse. I should add that I work in this hospital system so I know exactly how it operates. Had I not been there, she would have been double dosed.


Tons of other examples of things that could have gone terribly wrong had I not been there and had the knowledge and experience and contacts to keep things on track. More than once, I personally messaged one of the doctors to get something taken care of, but the average person doesn't have that kind of access.


Earlier this year, my wife went to see a cardiothoracic surgeon. He felt that she needed to see the neurosurgeon and said he would send over all of her information and that office would contact her to set up an appointment. She waited a week and heard nothing, so she called and was told that it could take a couple of weeks. She waited another week and called again and was told that she couldn't be seen because she hadn't had an MRI. She explained that she can't have MRIs because of retained metal in her body. A week later she called again and was told that since she already had seen a different doctor at another hospital she should just stick with them - but they were the ones that referred her over for another opinion.


Finally, I stepped in. I emailed the neurosurgeon directly and explained the situation and that we were getting a huge runaround just trying to make an appointment. He responded quickly, apologized, and she was scheduled a short time later. I doubt she would have ever successfully gotten an appointment had I not been able to bypass the whole system and contact the doctor myself. As it was, over a month went by between the time she was referred to him and the time she finally got scheduled for an appointment (which was another week or two after that). What should have taken 5 minutes took 4 weeks.

I’ve been told by doctor friends that there’s a code among doctors, that even if they don’t know each other, that they will respond promptly to requests etc. from other doctors. Even if you know how to contact them would they respond if you weren’t a doctor?

 

[bmcgonig]

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.

Well done!

 

[EastWest Gal]

I am the only physician in the family, and one of the few people in my family that does not seem to have weird psychological stuff going on. So I've found myself in the position of advocate far to frequently.

When my mother-in-law called my husband to tell him she had cancer, she asked to speak to me and for me to tell him about it. After surgery, she had some wound care issues and my husband and I visited as frequently as my work would manage, taking our three-year-old along (it was a one-hour drive each way). I was the one who checked on her surgical site, although she did have some visiting nurses.

When my mom became ill, she had been taking steroids for a vasculitis, and developed steroid psychosis. It was awful. By that time, we had moved from California to Pennsylvania. I flew back to California to trick her to going to the doctor's office then the ER. During her evaluation for the psych admission, lung cancer was discovered. Within a couple of months she developed pneumonia, and we had to find placement for her after her hospitalization, as she needed nursing home and hospice care. Back to California to help with that. I flew out monthly to visit her but to also support my dad, who was alone in the house. My mom was hospitalized first in August 2001. So I found myself flying across the country monthly after 9/11.

When my dad moved to be near me a couple of years later, I accompanied him to every doctor's appointment. It was fortunate that I was underemployed at the time, as there were a lot of appointments. In 2007 my dad had a brain hemorrhage (related to anticoagulants) and ended up in the ICU. I went over his medications, and they had stopped his oral diabetes meds and put him on insulin. They tried to tell me he was an insulin-dependent diabetic, but fortunately I was able to talk them into starting his oral med again and they weaned him off of insulin before he was discharged. I won't go into details, but he was moved to a short term rehab, for a month, then a step-down rehab place for two months, and I had to find assisted living/additional care for him after that. With each move, there were slight changes to his diagnoses and medications were forgotten. Once they forgot his diabetic med. The worst was the move from the hospital to the first rehab place, when the doctor forgot the digoxin prescription, and his heart failure soon went out of his control. That was my wake-up call, to check with the nurse every time I visited him, which was 3-5 days per week. I was also on first name basis with the social workers.

Fortunately, I had been filling his medication orders for years (he ordered refills online, and I logged in on his computer to place the refill orders), so I knew all his medications, and had a written list which went with him to the hospital. I also had to advocate for my son who broke his heel snowboarding, when the ER overcharged him by $2000 by using incorrect diagnosis codes.

Over the years I've also witnessed multiple examples of microfrauds-a little upcoding here, a little excessive and incorrect charting there, etc. The many things I saw caused part of my chronic burnout. I was extremely happy to retire early.

Healthcare is broken, IMO, largely because it is a for-profit enterprise here in the U.S. Cutting corners, sloppy, hurried work. If everything weren't purely profit driven we'd all be much better off.

 

[street]

Sure, is an eye opener topic. Yes thank you all for your services to health care professionals.

Sounds like a problem that won't be fixed easily.

 

[24601NoMore]

I had a 40-minute office visit with my PCP yesterday. 20 minutes is the allowed amount of time with a patient. Instead, we had an in-depth conversation about healthcare today. Truly eye-opening. One topic led to another. She also teaches medical students. The U of I medical school is collaborating with engineering students to find innovative ways to treat patients. The bottom line, our healthcare system is in trouble. Fewer medical students are able to get residency assignments. Places like Mayo Clinic and the big medical centers have benefactors and rich donation sources. Not so with the smaller community facilities. This a big problem facing average middle-class folks.

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...

 

[RetMD21]

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 think it helps if you know what you are talking about so doctors and nurses have an advantage.

Regarding residency slots, they are mostly funded by the federal government and ER and primary care have unfilled slots every year.