OFF TOPIC: Specialists in silos, patient suffering as result

[mpbser]

I have a new client who does not have the mental/emotional/physical capacity to advocate for himself/herself. I was recently hired after failure of the "advocates" and "case managers" at this client's main/local medical system and insurance company to assist in any meaningful way. While I can provide legal advice and counsel, I don't have the time to play the role of case manager or primary care physician overseeing all the disparate parts including numerous specialists in this case. I do that for my husband and that's nearly a full-time job in itself.

What is a patient who does not have the wherewithall to do when the silos are so disorganized that the patient's health care is not being appropriately addressed?

Any advice? Thoughts?

[MissMolly]

I have a small nuclear family. One brother (with cognitive deficits from a prior brain tumor) and a mother (healthy but 86 years of age). That’s it.

I have made careful estate planning. It includes a Living Trust in my name. The Living Trust will be activated when I cannot manage my own affairs. It includes a Durable Power of Attorney. The individual that I selected as my POA is someone I know will act in my best interests. It includes a Health Care Proxy with an addendum that specifically outlines my choices to limit medical interventions.

If your client has available assets, an investment advisor associated with a bank’s private banking services would give your client the oversight and due diligence he/she needs. This is the avenue I have accessed.

Another option is to see if your client is appropriate for a Palliative Care. I receive Palliative Care and one of its benefits is a designated Palliative Care physician who oversees all aspects of care and coordinates/communicates with specialist MDs.

My medical insurance also provides for a case manager for individuals with complex medical conditions. The case manager is an employee of my medical insurance provider. She calls once or twice a week to check-in. She is able to facilitate any concerns that I have between providers, fast-track pre-authorizations, etc.

But the sad reality is hat medical care has largely become a business model of care. Physician appointments are sometimes 15 minutes with the MD typing at the keyboard and entering words into my electronic medical record.

It is frightening to think I may be alone and fending completely for myself. But I’ve done my best to plan ahead for myself. That’s the best that any of us can do.
Karen

[Pyro70]

I have a new client who does not have the mental/emotional/physical capacity to advocate for himself/herself. I was recently hired after failure of the "advocates" and "case managers" at this client's main/local medical system and insurance company to assist in any meaningful way. While I can provide legal advice and counsel, I don't have the time to play the role of case manager or primary care physician overseeing all the disparate parts including numerous specialists in this case. I do that for my husband and that's nearly a full-time job in itself.

What is a patient who does not have the wherewithall to do when the silos are so disorganized that the patient's health care is not being appropriately addressed?

Any advice? Thoughts?

When people get diagnosed with cancer the oncologist should really take on the work of quarterback/PCP. However, I know many oncologists do not (like mine). Have you had a discussion with the oncologist about stepping up to take that role?

[mpbser]

Thanks for mentioning the life estate planning devices, missmolly.

The list of diagnoses don't include cancer so there is no oncologist to take charge. Unfortunately, there is no one main health condition that has been identified at this point. The client sees a few different specialists. To complicate matters, the only doctors who have provided any clarity to her largely sub-clinical issues are located a bit of a distance away and are "out of network" providers.

To make things worse, my client has very modest means and is on Medicaid which has been fighting the efforts to allow my client to see any medical provider outside the network. To top it off, the local doctors have been actively thwarting these efforts, e.g. refusing to provide referrals.

This conversation has been helpful because I now have some ideas on how best to proceed. Thanks!

[Pyro]

I’m not sure what you mean by “silo” but as far as help, if the diagnosis is bad enough, insurance companies have traumatic case handlers. It’s a direct phone call to somebody with authorization to get medical approvals quick, like minutes. When I was on TRICARE I had one, they were great! Maybe look into that to make their life easier.

[mpbser]

I will look into that. The insurance company seems to be one of the worst of the worst, sadly. It's my role to be the zealous advocate and push them as hard as possible, so I will see what I can do.

[MissMolly]

Mpbser:
You mention that no solid clinical diagnosis has been rendered for your client but that there are suggestive sub-clinical findings.

Welcome to the world of medicine as is experienced by many.

Fibromyalgia. This is a diagnosis of exclusion. It is a term to describe CNS hypersensitivity when there is no ready diagnosis. Many people with the diagnosis of fibromyalgia years later are diagnosed with other conditions that were originally missed.

Medicine knows that which is known.

But there much about the human body and how it works that remains unknown to medicine.

I have Addison’s disease, a relatively rare endocrine disorder. For several years I sought an answer to debilitating symptoms, a long litany of physician and ER visits. I was given a litany of diagnoses - ultimately, all which proved to be incorrect. It was not until I lost consciousness and went into a full Addisonian crisis necessitating an ICU admission that the pieces of the puzzle were identified. Sadly, it estimated that it takes (on average) 5 years for someone with adrenal insufficiency to be diagnosed. Five years of declining health, 5 years of progressive symptoms. Even endocrinologists can be confabulated in arriving at an accurate diagnosis.

My intestinal perforation (think unzipping of the length of the large intestine) was due to physician error in prescribing prednisolone. The dosage was exceedingly high. The relative concentration of prednisolone and its conversion ratio was not taken into account. A 5 mg daily dose became a 120 mg daily dose, over a 30 day period. I popped like an over-inflated balloon. The rest, as they say, is history. I was hospitalized for 65 days and was given a 5 % chance of survival.

I think it is all too common of a situation in today’s business model of medical care for patient’s to suffer from inaccurate diagnoses. A 15 minute office visit is insufficient when presenting symptoms do not fit neatly into a diagnostic category.

I know. I have been at the receiving end of inept medical care. It was NOT for lack of quality medical insurance nor financial assets. I have top tier medical insurance and am blessed with financial security to private pay for care where insurance authorization has been hesitant. To be clear: Inaccurate diagnosis does not discriminate. It can happen to anyone.

Once an inaccurate diagnosis is given, it can become a self-filling prophecy. Subsequent physician consultations will tend to give the prior diagnoses credibility. A level of Group Think can enshroud, with each physician rubber-stamping the diagnosis. Getting a genuine fresh opinion can be next to impossible.

I hope your client is able to find solace to know that she is not alone in her plight.

Exploring on-line support groups that are in-line/similar with her presenting symptoms might provide a detective’s clue. I am on an Addison’s support group. The group receives regular inquiries from people who have been dismissed by physicians and yet who have presenting symptoms . . . some with ACTH stimulation test results pointing to Addison’s where the test results have been interpreted improperly.

It is not an easy world to navigate when a diagnosis is elusive.
Karen

[Pyro70]

I understand that Medicaid can have some access issues, but typically if you go to an in-state academic/university hospital every specialist and PCP there will accept Medicaid without discrimination (in-network). Is there an institution like this where the patient could go? Since you mention there is no cancer diagnosis then the PCP should play “quarterback”. I’d suggest switching to a different one or having a discussion with the current one about taking on that role.

[rp1954]

P70's suggestion sounds reasonable, focused on financial wherewithal, if they haven't already been down those paths, perhaps many times.

I'll answer toward wherewithal of knowledge based resources, Plan B.
Mbpser's query sounds possibly similar to what drives the CAM/naturopathic industry, patients stuck in miserable - bouncing from MD to MD. They never get better or are unable to get a definitive diagnosis with a real resolution of symptoms. In many situations, algorithmic medicine seems to have broadly lost the ability to fix these patients' lives or to even correctly recognize some underlying biological problems, beyond in arrears.

These people often suffer for years, decades, or to the end of their days (or money) with little or no support from their families, drs, and insurers; much less for biological alternatives to the AMA-ADA-ASCO etc way. They are often treated as loafers, whiners, crazy or a combination thereof. They may be unsympathetic patients, irritable and long sick. The longer they are sick, the longer it may take to fix them, or in many situations, just a good biological (chemical) answer applied really thoroughly.

What to do? If they have the money and patience, someone should shop for 2-3-4 medical providers, typically ND or MD, with some kind of track record or reputation for similar tough cases with less conventional biological answers. Least total expense would be with as much at home (self ??) administered treatment, as possible, after the early, heavy lift parts are done. Then I'd arrange for their thorough work up and ask for a detailed analysis and written treatment plan, with common or possible variances, and expectations. Figure $500 - $2500 per dr's assessment for the consult(s) and labs, with some labs accumulating. Distance might be an issue but I try to find local resources first, or maybe, telephone support.

I don't have an instant recommendation for a personal case manager or adequate caretaker to aid or accompany them. Some church?

[radnyc]

Hope you’re doing this pro bono

[Pyro]

Hope you’re doing this pro bono

Good thought.

[kandj]

If this person is on Medicaid the. They would most likely qualify for a social worker as well. I would contact the local hospital they frequent the most and speak to someone in patient advocacy and inquire about a social worker for adult care.

[mpbser]

rp1954, you hit the nail on the top of the head.

The best thing my client can do right now is get a new primary care physician. However, I don't know of any in the local area who would have the time or skill to get a good handle on the root medical issues in this case. The quality of the doctors in the region leaves much to be desired.

Unfortunately, as far as social workers or advocates go, the very top of the departments have already been enlisted to support this patient. The general response thus far has not been to assist the patient, but to cover the arses of the medical institutions. Even worse, the medical facilities have taken to "dumping" my client in violation of federal law, because it appears they think it's easier to be dismissive of a complaining patient than to provide care.

[Green Tea]

I’m not sure what you mean by “silo” ...

It's not really clear to me either, but here's an article with a photo of a few silos ......

(I thought that the big silos were built to store genetically modified products like corn, soybeans, and colza ... but I guess there could be other interpretations.)

https://www.intellimed.com/healthcare-data-silos/

[radnyc]

As it relates to this topic, from Wikipedia:

An information silo, or a group of such silos, is an insular management system in which one information system or subsystem is incapable of reciprocal operation with others that are, or should be, related. Thus information is not adequately shared but rather remains sequestered within each system or subsystem, figuratively trapped within a container like grain is trapped within a silo: there may be a lot of it, and it may be stacked quite high and freely available within those limits, but it has no effect outside those limits. Such data silos are proving to be an obstacle for businesses wishing to use data mining to make productive use of their data