Evaluating Care Models at Top Hospitals to Fit an Individual Patient

@mpflood7- Good morning and welcome to Mayo Clinic Connect. Wow, what a fantastic question! And one that everyone should ask. I know that it's scary to go to a hospital, even if it's your one-hundredth time, never mind your first. Consumer Reports have a yearly report of all the top hospitals and their specialties so you might want to check there.
https://www.consumerreports.org/hospitals/HowToChooseAHospital/
I think that when you need to choose a hospital for specialty care it's important to find a teaching hospital. Teaching hospitals develop new and better ways to care for patients through outcomes-based research and the development of new technologies. The downside to this is that you will most likely be working with students along with your doctors. The second thing to look for is location. I'm an hour, by train, to Mass General in New England so I go there. When I had my first lung operation my pulmonologist recommended a young doctor who studied at Harvard who practiced in a local hospital. After he left for MGH to be closer to his home I followed him for my follow-up CT scans and a need for a second lobectomy for my second cancer. He has been my lead doctor for 23 years next month. The difference between hospitals and patient care was incredible.

You are right that ad hoc care doesn't work with patients because there is no real coordinated teamwork and for great care, there needs to be a coordinated effort of care between doctors who do get together in some sort of committee meeting to decide what to present to the patient as their best recommendations for care and survival and life quality. I have an Oncologist who is in charge of my care, a surgeon (who, because of our long term relationship ok's everything lol), a radiologist oncologist, and more for other problems. But my care is essentially coordinated by one doctor.

I think that when insurance companies took over patient care inpatient collaborative care for diagnostic purposes flew out the window. Because doctors who work in the type of system are lined up to work with each other they are selected because of their understandings of each others specialty. I don't think that it would work otherwise, and it's one of the reasons that ad hoc care doesn't work.

When I made my decision to follow my doctor to MGH I made it knowing that it was the best care that I could get and that I could be an out of state patient because I had insurance that paid for it. Have you checked to see if your insurance covers out of state medical care?

My name is Jennifer and I have just joined the Mayo Connect. I was first Diagnosed with gastroparesis in 2/19. Before that I had/have the following: SOUND SENSITIVITY, CANT TALK/CANT TALK LOUD, CANT SWALLOW WELL, HANDS AND FEET STAY COLD, TIGHTNESS IN RIGHT SIDE OF NECK/FACE, ARNOLD CHIARIA MALFORMATION, CONSTIPATION, SEVERE WEIGHT LOSS (over 30 lbs n a yr), BAIN PAIN (L4-S1), ARTHRITIS, SI DYSFUNCTION, RT ARM SURGERY AND PAIN AND NUMBNESS, SORES IN MOUTH (can’t think of word), DENTAL ISSUES. I could go on. I’ve had every blood test my PCP can think of. Been to multiple drs. Most recent news is a feeding tube. I know my body well enough to know that the drs are missing something. Not much support from family. Single mom with a 16 yr old daughter. Still barely holding down a job (been warned that my production is low and next step is written warning then termination). Clueless as to what to do or where to go😢

Hi mpflood7.....first let me say that I am very impressed with your objective efforts to determine how to obtain quality /comprehensive care. I suspect with your inquisitive nature.....by asking questions ...not assuming etc....you possibly would receive a safe level of care anywhere. The staff would realize you expect safe and thorough care....your “eyes are wide open.”
As a RN I have had an advantage over the years in trying to match medical situations that I /family/friends have had with the best provider. So I would say if you know anyone in medical field, pump their brains for input....but be sure you have confidence in their judgement. Also talk to people who you trust to see if they have recommendations. I once asked a radiologist tech who he would use with hand issue....a nurse on orthopedic floor and a PT person who they would go to for hip replacement.
Make full use of the internet....be wary of things saying AD....and too high up in Google ...
Call the place....what does your intuition tell you of how they sound.
You mentioned you will have one shot at going to a place....that’s sorta hard I think.....to determine which route to take for my husband’s prostrate cancer, we checked out 4 places,4 different approaches, and chose the one that we were most comfortable with...and still are 16 years later.
With my diagnosis 4 years ago with NTM infection in lungs, I spent lots of time on google learning about the bacterium, read link to this Support Group from Mayo Clinic. Coincidently it mentioned that there was going to be a day Seminar on NTM infections for patients and families in Denver in a month at National Jewish Health. Fortunately my daughter had just moved there so I would not have expenses and stress of knowing no one in an unfamiliar city.
So I began the process of being a patient there and attended the workshop where I could hear/see their specialists. I began as a patient there 4 months later, was scheduled for a 14 day evaluation....have returned for annual check ups and another annual workshop.
I did see a local infectious disease Dr prior to my visit to NJH who based on one culture would have started me on the rigorous 3 antibiotic anti TB regime ...NJH told me that their criteria are 2 positive cultures and Bronchiectasis on Chest CAT scan...none of which I had.
They told me this...that I did not need RX on 3rd day there....rather than make me wait the 14 days in suspense....very caring.
Their doctors spend time with their clients....our poor local drs are scheduled with a patient every 15 minutes or less.

You mentioned you would like being hospitalized while undergoing a work up....even before days of COVID....no...still too hazardous. ....and disruptive to your habits. At NJH as a new patient....at that time... you would be assigned a hospital room to use between appts for your 2 weeks there. Could even order up delicious meals ....no cost.
I loved reading their history....was astounded that they did not charge patients til 1968 .
I could go on and on...it reassures me that there is a place like this I could go to...hope you find one you will feel same way about.tdrell😀

@mpflood7- Good morning and welcome to Mayo Clinic Connect. Wow, what a fantastic question! And one that everyone should ask. I know that it's scary to go to a hospital, even if it's your one-hundredth time, never mind your first. Consumer Reports have a yearly report of all the top hospitals and their specialties so you might want to check there.
https://www.consumerreports.org/hospitals/HowToChooseAHospital/
I think that when you need to choose a hospital for specialty care it's important to find a teaching hospital. Teaching hospitals develop new and better ways to care for patients through outcomes-based research and the development of new technologies. The downside to this is that you will most likely be working with students along with your doctors. The second thing to look for is location. I'm an hour, by train, to Mass General in New England so I go there. When I had my first lung operation my pulmonologist recommended a young doctor who studied at Harvard who practiced in a local hospital. After he left for MGH to be closer to his home I followed him for my follow-up CT scans and a need for a second lobectomy for my second cancer. He has been my lead doctor for 23 years next month. The difference between hospitals and patient care was incredible.

You are right that ad hoc care doesn't work with patients because there is no real coordinated teamwork and for great care, there needs to be a coordinated effort of care between doctors who do get together in some sort of committee meeting to decide what to present to the patient as their best recommendations for care and survival and life quality. I have an Oncologist who is in charge of my care, a surgeon (who, because of our long term relationship ok's everything lol), a radiologist oncologist, and more for other problems. But my care is essentially coordinated by one doctor.

I think that when insurance companies took over patient care inpatient collaborative care for diagnostic purposes flew out the window. Because doctors who work in the type of system are lined up to work with each other they are selected because of their understandings of each others specialty. I don't think that it would work otherwise, and it's one of the reasons that ad hoc care doesn't work.

When I made my decision to follow my doctor to MGH I made it knowing that it was the best care that I could get and that I could be an out of state patient because I had insurance that paid for it. Have you checked to see if your insurance covers out of state medical care?

My name is Jennifer and I have just joined the Mayo Connect. I was first Diagnosed with gastroparesis in 2/19. Before that I had/have the following: SOUND SENSITIVITY, CANT TALK/CANT TALK LOUD, CANT SWALLOW WELL, HANDS AND FEET STAY COLD, TIGHTNESS IN RIGHT SIDE OF NECK/FACE, ARNOLD CHIARIA MALFORMATION, CONSTIPATION, SEVERE WEIGHT LOSS (over 30 lbs n a yr), BAIN PAIN (L4-S1), ARTHRITIS, SI DYSFUNCTION, RT ARM SURGERY AND PAIN AND NUMBNESS, SORES IN MOUTH (can’t think of word), DENTAL ISSUES. I could go on. I’ve had every blood test my PCP can think of. Been to multiple drs. Most recent news is a feeding tube. I know my body well enough to know that the drs are missing something. Not much support from family. Single mom with a 16 yr old daughter. Still barely holding down a job (been warned that my production is low and next step is written warning then termination). Clueless as to what to do or where to go😢

Thank you. My mother and grandmother were nurses, so I am a fan.

Regarding being assigned a hospital room, can you clarify? Do you mean you had regular access to a dedicated hospital room even as an outpatient?

@mpflood7 You've asked a great question, and you are already ahead because your medical providers have recommended Mayo for your needs. My first experience at Mayo was for spine surgery and after being refused by 5 spine surgeons, it took me 2 years to realize that I wasn't going to get surgical help locally, so I turned to Mayo. This is my experience of how medical should not be in comparison to the way it should be. I didn't know there was a better way until I came to Mayo.

At first, I had tried to stay close to home, and when that didn't work out, I consulted at a major university teaching hospital with a med school in the nearest city. I thought that the problem was because I also had thoracic outlet syndrome which created similar symptoms making it hard to figure out what symptoms could be spine related and which were TOS. I had already seen a specialist at this university facility for my TOS and had been a patient with him for ten years, so it made sense to me to consult there about my spine. I thought the spine and the thoracic surgeons would consult each other about my case, but it never happened. Each told me to see the other specialist, and the visit results were not sent to the other. When I had an MRI, those results were mistakenly sent to the wrong office (because there were both downtown and suburban offices for the doctor), and I would get to my appointment that I had waited 5 or 6 weeks for, and my results had not arrived, and the computer network was separate for downtown, so they could not lookup my records. This should not happen and it wasted my time.

In the first visit with the spine surgeon there, he missed part of the diagnosis because he told me that my cervical disc problem would cause arm and scapular pain, and that my reported leg pain was not related. He didn't consult other doctors about that. This was a error that I would find about 5 months later. He asked me to do an epidural injection as a diagnostic test to see if it would take away my pain symptoms. I didn't want a spine injection, but I did as requested because I thought it would lead to getting help. The injection took away all the pain I had everywhere temporarily. The surgeon never gave me an opinion about this, he just ignored the result. Later, this clue helped me find the reason why I had leg symptoms and how it related to the diagnosis of cervical stenosis of spinal cord compression in the spinal canal. Stenosis was evident on my MRI's, but the doctors could not connect my symptoms to the imaging, and because they couldn't explain it, I was refused help. I was put in the position trying to convince the doctor that my leg pain was connected to my spine issues and I knew that because I could turn my head and change the pain to turn it on or off with my head position. He didn't listen.

I was told to follow up in a few months and also to consult with the neurologist who I'd seen before. I had to wait 6 weeks for the steroid crystals to be absorbed from the spinal injection before a new MRI could be done. I was getting worse, and the neurologist ordered the MRI. I tried to consult with the surgeon about the new imaging, and his nurse refused to make an appointment for me. I had reported real symptoms of spinal cord compression to her which she didn't recognize, and her response was to tell me to see a doctor about it. The neurologist called another spine surgeon at that facility to see me about the MRI. His recommendation was to do more spine injections and to do nerve conduction tests. Just a few weeks later, I learned this other surgeon was leaving to take a job elsewhere.

One day I happened to call when the nurse was off, and another one made a followup appointment with the main surgeon. This was the last time I saw him. I had diagrammed my pain as it progressed over the few months since the spine injection and given this to the surgeon. I was relieved when he finally mentioned surgery, but he said he didn't know if it would make me better or worse. He commented that I had pain in every dermatome (all over my body) and that it could be from an inflammatory problem like MS, so my efforts backfired because he didn't understand what caused it. It wasn't long after this, that I had vertigo caused by the muscle spasms associated with the spine issues and I sent a message to the surgeon. The response came back from the nurse, that he would not offer surgery at this time and to stay in physical therapy. That's when I looked at Mayo surgeons and I read their medical literature that was available online. One of the papers mentioned leg pain in relation to cervical issues and "funicular pain". I looked up that term and found medical cases similar to mine, so I knew what the doctor had missed. I asked both the neurologist and the thoracic surgeon who knew my case to help me bring this to the attention of the dismissive surgeon, and neither would help me. That was a shock to me, but it seems that no one wants to point out a mistake to a highly respected leader. The best advice they gave me was to get another opinion, and I discussed Mayo with them. I wasted 6 months waiting for appointments and jumping through hoops only to come to a dead end and I was living with advancing disability and loosing the coordination of my arms.

This is the medical literature that changed my course and this type of spine symptoms was already known at Mayo which gave me hope that a surgeon would understand this and believe me.
https://www.ncbi.nlm.nih.gov/pubmed/20938789
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3111492/
I sent this literature in with my imaging and request to be seen at Mayo and was given an appointment. They scheduled a neurology consult that would lead to other testing first before the surgery consult. I was sent for blood tests, nerve conduction tests, and to testing to confirm thoracic outlet syndrome, and from that to a consult with a thoracic vascular surgeon to consider which of my issues of the spinal cord compression or the nerve and vascular compression from TOS was the greater of the issues. The TOS testing and consult was in the morning and on the same day as my spine consult. While I was at the neurosurgery spine consult, the surgeon's phone rang and it was the vascular surgeon calling with his opinion on my case. All of my testing at Mayo was done in just 3 days total in the same week, and I was offered surgery at the first appointment. That is how medicine should be, and everyone at Mayo came together efficiently to help me, and not only that, I was treated with kindness and respect. I didn't need to try to prove my case anymore or to beg for help. I was an artist who was loosing the coordination of her arms, and at Mayo, that mattered. The doctors at the other institution also knew this, but it didn't matter there.

Though all of this, I also looked at US News and World Report rankings, and Becker Spine Review. I did look at patient reviews, but I took them with a grain of salt. I looked up where surgeons were educated. I looked to see if they were leaders in their field and respected by their peers. I knew a lot about spine surgery because I had been watching online videos of surgeons presenting at conferences and reading literature and research and papers of any surgeon I would want to see. Hospitals also have rankings too, and some hospitals have lower success rates. One thing of concern is infection rates, and some hospitals are better than others. I learned to advocate for myself and ask questions, and I learned enough to know when I was getting good answers. Always ask and advocate for yourself. No one else can do that. I'm glad I didn't have surgery with a surgeon who didn't understand my case. He could have done the surgery, but why trust someone who doesn't understand and who doesn't really want you as a patient? I would have saved myself a lot of trouble if I had come to Mayo first.

My Mayo Patient story
https://sharing.mayoclinic.org/2019/01/09/using-the-art-of-medicine-to-overcome-fear-of-surgery/