Can we just hire a freelance medical case manager?
October 31, 2020 3:59 PM Subscribe
Someone I care about has an incurable medical condition with unbearable symptoms. Their straightforward treatment options have failed. What's left are rare or customized options that would require specialists at several different practices to communicate closely and work together. This is basically impossible, because modern medicine is an Orwellian shitshow. What they really need is something like a case manager — someone to advocate for them, coordinate care, keep calling offices that don't return calls, and understand things like insurance and billing. Is that something an adult living independently outside an institution can get? How would we go about getting it for them?
(I'm leaving the medical details vague for a reason, but please assume their diagnosis is correct and unambiguous. Their specialist is too overworked to coordinate their care or advocate for them, but he's nevertheless the best they can find in their rural area. They have a supportive nesting partner and lots of folks who want to help from afar, but this is a lot and everyone is overwhelmed.
So this is probably not a problem that can be solved by amateur medical detective work, or by our own amateur bureaucracy-management skills like "ask friends for help," "fire your care team if they suck," "keep asking for a referral until they give you one" or "cry loudly until they're too ashamed to tell you no." We really could use a professional to coordinate the care team we've got.)
(I'm leaving the medical details vague for a reason, but please assume their diagnosis is correct and unambiguous. Their specialist is too overworked to coordinate their care or advocate for them, but he's nevertheless the best they can find in their rural area. They have a supportive nesting partner and lots of folks who want to help from afar, but this is a lot and everyone is overwhelmed.
So this is probably not a problem that can be solved by amateur medical detective work, or by our own amateur bureaucracy-management skills like "ask friends for help," "fire your care team if they suck," "keep asking for a referral until they give you one" or "cry loudly until they're too ashamed to tell you no." We really could use a professional to coordinate the care team we've got.)
A friend of mine used a medical concierge for just this reason. It cost a lot; she had the money. We also learned, when investigating that, that her insurance had someone called a "palliative care coordinator" who would do some of that type of work (but we didn't use that person).
posted by BlahLaLa at 4:18 PM on October 31, 2020
posted by BlahLaLa at 4:18 PM on October 31, 2020
Try searching on the term “nurse case manager” in your area. Freelancers are not super easy to find but they are out there. You might also try asking any nurses you know if they have retired friends who would be interested in managing your case. If you don’t know any nurses personally, maybe contact a nursing school in your area.
posted by corey flood at 4:28 PM on October 31, 2020
posted by corey flood at 4:28 PM on October 31, 2020
Another option is to look for a geriatric care manager. The person need not be elderly.
I would check references and all that but this is a start: Aging Life Care Expert Search
posted by 6thsense at 4:57 PM on October 31, 2020 [1 favorite]
I would check references and all that but this is a start: Aging Life Care Expert Search
posted by 6thsense at 4:57 PM on October 31, 2020 [1 favorite]
A private social worker may be an option, depending on where the patient is located. It's also possible that the local government provides social workers for cases like this.
posted by brianogilvie at 6:25 PM on October 31, 2020
posted by brianogilvie at 6:25 PM on October 31, 2020
Response by poster: How would we find out about local government options? There's no actual requirement that it be a freelancer, any institution that provides this sort of help would be welcome, we just don't know where to start looking.
posted by nebulawindphone at 6:44 PM on October 31, 2020
posted by nebulawindphone at 6:44 PM on October 31, 2020
Are you able to give more information about their location? USA I assume based on your location ? What state?
posted by dttocs at 7:03 PM on October 31, 2020
posted by dttocs at 7:03 PM on October 31, 2020
Response by poster: They're in the North Quabbin region of Franklin County, MA.
posted by nebulawindphone at 7:15 PM on October 31, 2020
posted by nebulawindphone at 7:15 PM on October 31, 2020
This organization could be a place to start. Palliative care may not be quite what you need, but they do tend to do a lot of working with multiple specialties and are very focused on the needs and values of the patient. Staff at a place like that may be well placed to help you find a local nurse or social worker who is retired or looking for part time remote work who could be the person you need.
posted by MadamM at 9:24 PM on October 31, 2020
posted by MadamM at 9:24 PM on October 31, 2020
I don’t know if it would work this way in the US, but here the “insider” advocate would be a GP/family physician, with some of the legwork being done by, honestly, a partner/family member. The latter (that’d be me, in our scenario) is the person in the waiting room with the binder full of records and paperwork, organizing everything on Google Calendar, calling offices and whoever works the fax machines at the relevant offices every day, sometimes multiple times a day, sending emails, double checking meds with the doctors and the pharmacist. The medical case for this or that would obviously be made by the GP, as is medical oversight. (Specialists see through their prisms, it’s the general practitioner who takes the whole picture into account.)
Can the nesting partner do this? Is there a GP?
posted by cotton dress sock at 9:41 PM on October 31, 2020
Can the nesting partner do this? Is there a GP?
posted by cotton dress sock at 9:41 PM on October 31, 2020
Medicaid (at least in IL) do have a provision to provide care coordination to all members, so if your family member is low income and on some sort of public health plan you may already have access through care coordination through your insurance benefits. Though the quality of that that care may vary.
It's sometimes also offered on private insurance plans, but not as often. So of you haven't checked with the insurance, that should be a step.
posted by AlexiaSky at 10:50 PM on October 31, 2020
It's sometimes also offered on private insurance plans, but not as often. So of you haven't checked with the insurance, that should be a step.
posted by AlexiaSky at 10:50 PM on October 31, 2020
I'm a doctor.
Here's my advice:
Work backwards from your friend’s needs. Whatever they are, within driving distance you’ll probably find several institutional or centralized providers of the specific services he or she needs. These could be outpatient/ambulatory care centers at hospitals, independent physical therapy/rehab centers, multi-specialty clinics, short- and long-term acute care facilities, and so on. Any of these purpose-built, ad-hoc care providers will have case managers that specialize in meeting the needs of people like your friend
And while qualified, independent, non-institutionally affiliated CMs certainly could help, I find it hard to believe that they could help as much as their institutionally affiliated counterparts. Our clusterfuck medical system is so byzantine and so idiosyncratic that to harness and handle it to meet the specific needs of people with specific illnesses, you really want to have a CM that’s an expert in that niche.
Good luck!
posted by BadgerDoctor at 10:50 PM on October 31, 2020 [3 favorites]
Here's my advice:
Work backwards from your friend’s needs. Whatever they are, within driving distance you’ll probably find several institutional or centralized providers of the specific services he or she needs. These could be outpatient/ambulatory care centers at hospitals, independent physical therapy/rehab centers, multi-specialty clinics, short- and long-term acute care facilities, and so on. Any of these purpose-built, ad-hoc care providers will have case managers that specialize in meeting the needs of people like your friend
And while qualified, independent, non-institutionally affiliated CMs certainly could help, I find it hard to believe that they could help as much as their institutionally affiliated counterparts. Our clusterfuck medical system is so byzantine and so idiosyncratic that to harness and handle it to meet the specific needs of people with specific illnesses, you really want to have a CM that’s an expert in that niche.
Good luck!
posted by BadgerDoctor at 10:50 PM on October 31, 2020 [3 favorites]
“Patient Navigator” is the term used around here - usually a RN or SW, but there are new education programs that some people use to get into the field. Try googling “patient navigator” [primary diagnosis] to see if you can find an organization providing the service in the area of experience you need.
posted by saucysault at 3:32 AM on November 1, 2020
posted by saucysault at 3:32 AM on November 1, 2020
Response by poster: Sorry to thread-sit, but I can see I've gotten things off in a weird direction by being coy about symptoms.
This is a thirty-something adult with nerve damage causing constant unbearable pain. They live independently with their partner, and have an income they and their partner depend on. They are likely to live for decades and are absolutely not a candidate for pallitive care. The nerve damage is formally diagnosed and related to a clear injury, and it can't be surgically repaired.
I am not asking you to give a second opinion.
I know there are a lot of possible treatments for pain. They have a well-regarded pain specialist who has tried the normal ones and many experimental ones. They've either been ineffective or triggered bad reactions. Of the last few treatments that worked, one was topical and triggered a severe skin reaction, one triggered weird OD-like cognitive symptoms at a normally therapeutic dose, and one was too sedating for them to hold a job.
None of these were opioids. We are not looking for access to opioids. Opioids have not been effective.
I am also not asking for advice on their treatment.
But. At this point their best options seem to be things like "Work closely with a pain doctor, an allergist, and a compounding pharmacy to figure out quickly what part of the topical treatment was triggering the skin reaction" or "See if a genetic test can reveal why they react so weirdly to so many medications."
This has been a nightmare. Nobody returns anyone else's calls, despite regular pestering from us. When they do talk to each other, they don't pass on information accurately. We could really use someone to help us make this work.
It doesn't have to be a freelancer, I'm sorry I used that word.
Someone with the state or at a hospital would work fine if we could get them to pay attention to us.
posted by nebulawindphone at 4:39 AM on November 1, 2020 [1 favorite]
This is a thirty-something adult with nerve damage causing constant unbearable pain. They live independently with their partner, and have an income they and their partner depend on. They are likely to live for decades and are absolutely not a candidate for pallitive care. The nerve damage is formally diagnosed and related to a clear injury, and it can't be surgically repaired.
I am not asking you to give a second opinion.
I know there are a lot of possible treatments for pain. They have a well-regarded pain specialist who has tried the normal ones and many experimental ones. They've either been ineffective or triggered bad reactions. Of the last few treatments that worked, one was topical and triggered a severe skin reaction, one triggered weird OD-like cognitive symptoms at a normally therapeutic dose, and one was too sedating for them to hold a job.
None of these were opioids. We are not looking for access to opioids. Opioids have not been effective.
I am also not asking for advice on their treatment.
But. At this point their best options seem to be things like "Work closely with a pain doctor, an allergist, and a compounding pharmacy to figure out quickly what part of the topical treatment was triggering the skin reaction" or "See if a genetic test can reveal why they react so weirdly to so many medications."
This has been a nightmare. Nobody returns anyone else's calls, despite regular pestering from us. When they do talk to each other, they don't pass on information accurately. We could really use someone to help us make this work.
It doesn't have to be a freelancer, I'm sorry I used that word.
Someone with the state or at a hospital would work fine if we could get them to pay attention to us.
posted by nebulawindphone at 4:39 AM on November 1, 2020 [1 favorite]
It’s possible elder services might be able to point you in the right direction despite your friend’s age. Franklin County, as you likely know, isn’t very well-resourced. Semi local/regional to your friend are:
https://highlandvalley.org/
https://mcoaonline.com/
Maaaybe a cancer group could direct you? This org is very well connected and might be able to help.
http://www.cancer-connection.org/
posted by john_snow at 5:19 AM on November 1, 2020
https://highlandvalley.org/
https://mcoaonline.com/
Maaaybe a cancer group could direct you? This org is very well connected and might be able to help.
http://www.cancer-connection.org/
posted by john_snow at 5:19 AM on November 1, 2020
In addition to the resources that John Snow mentioned, it's possible that LifePath, which is based in Greenfield, could refer you to someone:
https://lifepathma.org/services/start-here-information-and-caregiver-resource-center
posted by brianogilvie at 7:43 AM on November 1, 2020
https://lifepathma.org/services/start-here-information-and-caregiver-resource-center
posted by brianogilvie at 7:43 AM on November 1, 2020
It’s not clear from your question, but if your friend has insurance (commercial or Medicaid, this is less universally true for Medicare) they likely can access a nurse case manager who works with their plan, in their state, and will know exactly what’s covered and what’s not. They can help coordinate care AND benefits. An insurance case manager can also help with things like appointment scheduling and patient education. They can also get involved in insurance denial appeal situations where your friend wants to try a new provider or therapy that isn’t usually covered by their existing plan benefits.
posted by little mouth at 9:48 AM on November 1, 2020
posted by little mouth at 9:48 AM on November 1, 2020
Speaking as someone living with nerve pain (mild-moderate, though. But have engaged with people with severe pain), I think, unfortunately, that expectations may need to be reset... anticonvulsant medications and even some SSRIs and SNRIs do unfortunately often come with the worse cognition, and I’m not sure there’s a way around that due to how they work, there is just usually a trade off of some kind with any medication that has an effect.
Hopefully the more experimental methods are helpful.
But it may be that they will have to accommodate this in their career and financial planning (whether because of side effects, or because of practical things like having to move close to a city and/or having to take time off for [eg nerve block] appointments, etc). It just sucks.
posted by cotton dress sock at 11:34 AM on November 1, 2020
Hopefully the more experimental methods are helpful.
But it may be that they will have to accommodate this in their career and financial planning (whether because of side effects, or because of practical things like having to move close to a city and/or having to take time off for [eg nerve block] appointments, etc). It just sucks.
posted by cotton dress sock at 11:34 AM on November 1, 2020
This thread is closed to new comments.
"Independent patient advocates" might get you more hits than case manager. This is highly location dependent though. It is also, very, very expensive.
posted by furnace.heart at 4:14 PM on October 31, 2020 [1 favorite]