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Caregiver Perspective: Specialization of Medicine

I am concerned that the specialization of medicine is leading to a decrease in the quality of care available rather than an increase. I have seen this more and more over the past several months as my husband has had a series of mystifying medical conditions requiring different “specialties” to determine the underlying cause. These specialties do not always play well together.

Finding the right specialist

Let me share a hypothetical example.

  1. A neurologist suspects a symptom is suggestive of an orthopedic disorder. He won’t initiate a treatment plan because he does not want to offend his colleague or be accused of practicing outside the scope of his specialty. Instead, he refers the patient to an orthopedic specialist for a consultation.
  2. In our area, orthopedic appointments are in short supply, and it may take as much as three months for an office visit. Meanwhile, the symptoms get worse. The patient eventually sees the orthopedist and finds out the problem needs to be addressed by physical medicine and rehabilitation (PM&R) instead.
  3. Another month passes waiting for an appointment — another set of scans and x-rays. The problem is much worse now when he sees PM&R who declares that the patient now requires surgery. The patient is referred back to orthopedic surgery and the problem has yet to be resolved or basically treated with a conclusive plan.

My husband’s experience at the medical center

My husband has, unfortunately, been in the hospital a lot this past year with unusual symptoms. We use a medical center for his care that is very specialized. Upon admission to the Emergency Department (ED), the ED team drives the treatment plan, admitting him if they can’t solve his immediate problem. On admission, another team accepts him as their patient based on his primary diagnosis for that visit. That team coordinates his care and pulls in other medical specialists for addressing secondary complaints. At discharge, his follow-up goes to the primary admitting team. Since Lynn had four admissions this year, he now has four different teams following him for four separate issues.

Using a primary care physician

You can imagine that if I kept all those appointments how costly it would become not to mention how confusing. Instead, I prefer to use his primary care physician (PCP) from Family Medicine for all his treatment plans to maintain a sense of consistency. She works at the same facility and is excellent at sorting out the drama between the medical and surgical teams. She also is terrific about consulting with me through email and by phone about his condition and supports not making unnecessary trips onsite to her office.

Why isn’t the neurologist in the driver’s seat?

While I’m pleased with our PCP, I must admit that the professional I think should be in the driver’s seat coordinating Lynn’s care is his neurologist, but he isn’t. I don’t understand his hands-off approach. I think the neurologist should case manage his care. From my way of thinking, multiple sclerosis affects EVERY organ system of the body. Nerves leave the brain and travel throughout the body, right?  That means all parts of the body are affected and therefore the neurologist should be familiar with the entire body.

  • Why is it that a neurologist only focuses on the nerves themselves?
  • Why aren’t they interested in how all the organs are affected?
  • Why are they not acting as the commander-in-chief of the army of specialist gathered to fight the effects of MS that are attacking the multiple systems of my husband’s body?

The neurologist does not look at the big picture

When Lynn goes to a neurologist appointment, he has his reflexes tested, eyes checked, and new neurological symptoms explored, but the neurologist does not ask about any changes elsewhere.

Why doesn’t the neurologist start each appointment with, “Tell me what’s different about how your body’s functioning since our last visit. Include anything you might have noticed that is different that affects any part of your body that is consistently reoccurring or has been a concern to you. I am also interested in any emotional or mental health changes you may have encountered.”  If he asked an open-ended question like that, then imagine what all he might find out.

Need to share information

MS has so many vague and often misunderstood or unknown symptoms that go unmentioned that only a neurologist might recognize as a problem. However, how many neurologists bother to explore if they are present? I know ours has never said one word. Why isn’t part of treatment for a condition like MS incorporating an explanation on what could happen or what to report as new symptoms? So many patients have symptoms they never know are related to MS until they come to a website like multiplesclerosis.net and suddenly realize they have a significant symptom.

A comprehensive, team approach to health care

I hope that one day, the medical field will consider treating patients with chronic complex conditions from a comprehensive standpoint using a team approach and a leader to coordinate their efforts. Currently, each specialist does their own thing without talking to others.

The pitfalls of specialized medicine

  • Each physician has their treatment goals for the patient’s health that impacts the outcomes of other medical conditions, but they fail to share those goals with other teams treating related aspects of the patient’s condition.
  • Different teams prescribe medications. Although the medications may impact the entire body, none of the different medical teams discuss changes in medications and how a change in one drug might impact another when a significant drug regiment change is occurring.
  • Symptoms are identified that imply complications that cross over between body systems. However, the specialties neglect to share the information among each other; therefore, only one specialty takes appropriate intervention measures.

Why aren’t they all sharing information? Maybe that would be just too much like right.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • PattiandBob
    4 months ago

    Sadly, all of us with spouses or people we care for with PMS or SPMS face multiple hospital visits and multiple doctor visits. I get so sick and tired of explaining to each and every doctor “what the problem is” especially since we don’t know what the actual problem is ! Our last visit was caused by antibiotics used to treat his UTI (a frequent problem). Sadly this round killed the good bacteria in his system and he got C-diff. We had to treat it with “different” antibiotics that only enter the gut, not the blood stream and they cost approx. $300.00 (our share) for a 10 day supply. Try that out for 5 months ! Then into the hospital because they did not work and he was bleeding from the infection. The “Hospitalist” had NO CLUE how to treat him as a MS patient on Ocrevus and TRIED to change ALL his medications after talking to us for less than 3 minutes. I refused to let him change his med’s without his primary doctor’s agreement .. and that was the beginning of a HORRIBLE hospital stay and all kinds of mixups. We went there because that is the hospital his CID doctor works out of.
    But .. we had to use their hospital’s hospitalist and his CID was on vacation right after he was admitted. After 7 days I told them if they did not discharge him (the hospitalist had to do this and never managed to come by his room) I would take him out with out discharging him and remove the IV myself. That got the attention of the nursing supervisor (FINALLY) .. they removed his IV port and got him discharged. My biggest rant was because he is TOTALLY dependent on a “patient lift” which in hospitals requires lift teams.. and they did not have one there on weekends or after 5 PM on weekdays he spent 4 days in bed because the nurses didn’t know how to use the lifts. EEEErrrggg I could go on and on .. but anyway .. I so agree .. you NEED to be there with your loved one and you need to be their advocate in ALL things .. His doctors now know we will NEVER to to that hospital again.

  • PattiandBob
    4 months ago

    I forgot to say .. I did write a letter to the patient care administrator of this hospital and sent copies to all of his doctors with all the things that did or did not take place. They were all totally appalled and very disappointed at his treatment (or lack of treatment) and said they would follow up on their end too. We did receive a letter yesterday from the hospital stating they were looking into this .. we’ll see .. I would attach the letter with all that my husband had to put up with, but it is 5 pages long 🙁

  • Donna Steigleder moderator author
    4 months ago

    Your story sounds so familar like something right out of one of my experiences; only worse. I don’t know why they can’t trust that the caregiver/family member knows what they are talking about, and we could steer them down the right path if they would only listen. It’s appalling how often similar situations happen around the country. I’m so sorry you and Bob went through this. Donna Moderator.

  • MommaMia520
    4 months ago

    This sounds like my rant! Actually, I’m not as stumped by it as last year.. I cannot change the system, nor is it my job in life. Thankfully.
    The system is a cash cow to someone who isn’t really interested in your problems.
    I have been over this with the ‘system’ including my pcp, neurologist and urologist who all agreed that it’s a screwy situation, but, their stuck in it too.
    And there is no side-stepping and definitely no cuts… such an epic waste of time and money, on so many levels. Blah blah…
    But I’m just thankful for my primary, she is a goddess and I have come to acknowledge her as the Captain. She always laughs.
    But it’s true.
    Thank you for reminding me that life is a trip ⚔️

  • Coolcow
    4 months ago

    I’m living in the same universe. I have severe intermittant hip pain on my weak side. My neurologist said to see an orthopod. The ortho doc says it might be the MS, though I do have a torn labrum. Wants to do a hip replacement, but says this might not fix the hip pain! What to do???

  • Donna Steigleder moderator author
    4 months ago

    I can really emphasize with your situation. Here’s the specialist unsure of what to do coming to oyou to make the decision about something that has no guarantees. It’s so frustrating because you can only guess what to do. If only they had a fairly accurate guesstimate of success to apply.Good luck with that decision. Maybe ask if there are other patients you can talk to who have agreed to be references for the procedure. Sometimes they are available and it helps to use them to discuss options.

  • Cardgal18
    4 months ago

    I had an experience a few months ago with my neurologists PA. I make a list to discuss at each visit. Every time I would say one he said “ that’s not MS”. He must have said it six or seven times. Each one was indeed an MS symptom. Next time I saw the neurologist I asked to not see him again. She agreed. Now I find out she’s leaving, so I’ll get stuck with him until another doctor is hired. This is a specialized MS center too! Agh!!!

  • Donna Steigleder moderator author
    4 months ago

    Thanks for sharing your experience. I can feel your frustration and would feel the exact same way.

  • JLMN
    4 months ago

    I think expecting a general neurologist to know everything about MS and every part of the body it affects is asking too much. But I wholeheartedly agree that all of the different specialties need to be sharing information. To the author and anyone else facing the challenges outlined in the article… if you can make it to The Mayo Clinic and their autoimmune neurology division, I’d highly recommend it. They are doing all of the things you’re hoping for- it’s their model of care.

  • Donna Steigleder moderator author
    4 months ago

    Thanks for the information about Mayo. They are an excellent resource but traveling that far for care is out of the question. I would not expect a neurologist to be an expert in all aspects of all conditions, but I would expect them to be aware of all conditions that MS typically impacts and how it manifests itself. I would also expect them to be able to comment to the neurological impact associated with the relationship and recommend guidance to the specialist of the other condition collaborative advice which I don’t see happening. All doctors get basic foundational training in all disease entities and should be able to talk the talk. They all also should be able to talk about their aspect of their specialty to those other conditions.

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