Need a Medical Advocate
August 15, 2020 4:28 AM
My wife suffers from a number of health conditions. Each condition has a doctor. Each doctor assigns treatments and medication. She is part of a health plan where all doctors, theoretically, can see each other's notes and make decisions in her best interest from that collective knowledge.
But her condition seems to be such that they seem only able to tweak their diagnosis and prognosis and treatment plans and medication, not offer any changes that can actually improve her overall condition, (which I've heard her tell friends over the phone is getting worse). That is something I don't want to hear, so I am on her to call her doctors to set up appointments to discuss options.
They are slow to make appointments with her, even Zoom calls, since were both fearful of her going to an in-patient appointment. Slower still returning the calls she does make. Since corona virus, EMT's have come to our house twice and once, she was transported to the hospital. Usually, the stay is just a few hours or overnight, but in the past, those trips have been more serious. When they tweak her medication, one thing improves while another thing gets worse (ex: when she has arrhythmia, they tell her to reduce her dosage of one medication, but that slows down her heart rate which makes her dizzy and prone to lose consciousness). This whack a mole stuff doesn't fill either of us with confidence.
I am not convinced the medical system is working while my wife is getting more discouraged with her conditions (a breast cancer survivor, flapping heart valve, oversized heart muscle resulting in low O2 in blood and constantly out of breath with zero exertion). She has done things like change her diet that for a time, helped her feel great but only for about six weeks. Also, when she was just finished with her heart surgery, it worked but again, only for about six weeks. Then, she went back to the way she was before, out of breath all the time. About a year later, the heart surgeon called to apologize to her that the surgery didn't really work. I know in my head that this virus has turned everything upside down, but they didn't seem to me very responsive beforehand. That may be unfair, but its really hard for me to separate from my feelings right now considering I see her everyday and see how unhappy she is.
Here's the question. Is there a person, like a financial planner for money or a general contractor for subs, that can look at her treatments and procedures from above and recommend to us the right questions to ask or the right courses to pursue to help us cut through what feels like delay and confusion while she gets worse? We want to look at things that haven't been thought of rather that keep falling back on what feel like convenient tropes that waste time she doesn't feel she has (or me either). I get scared and angry at the same time. Sometimes, I feel like they're tired of us calling and I feel like they're just waiting for her to die.
But her condition seems to be such that they seem only able to tweak their diagnosis and prognosis and treatment plans and medication, not offer any changes that can actually improve her overall condition, (which I've heard her tell friends over the phone is getting worse). That is something I don't want to hear, so I am on her to call her doctors to set up appointments to discuss options.
They are slow to make appointments with her, even Zoom calls, since were both fearful of her going to an in-patient appointment. Slower still returning the calls she does make. Since corona virus, EMT's have come to our house twice and once, she was transported to the hospital. Usually, the stay is just a few hours or overnight, but in the past, those trips have been more serious. When they tweak her medication, one thing improves while another thing gets worse (ex: when she has arrhythmia, they tell her to reduce her dosage of one medication, but that slows down her heart rate which makes her dizzy and prone to lose consciousness). This whack a mole stuff doesn't fill either of us with confidence.
I am not convinced the medical system is working while my wife is getting more discouraged with her conditions (a breast cancer survivor, flapping heart valve, oversized heart muscle resulting in low O2 in blood and constantly out of breath with zero exertion). She has done things like change her diet that for a time, helped her feel great but only for about six weeks. Also, when she was just finished with her heart surgery, it worked but again, only for about six weeks. Then, she went back to the way she was before, out of breath all the time. About a year later, the heart surgeon called to apologize to her that the surgery didn't really work. I know in my head that this virus has turned everything upside down, but they didn't seem to me very responsive beforehand. That may be unfair, but its really hard for me to separate from my feelings right now considering I see her everyday and see how unhappy she is.
Here's the question. Is there a person, like a financial planner for money or a general contractor for subs, that can look at her treatments and procedures from above and recommend to us the right questions to ask or the right courses to pursue to help us cut through what feels like delay and confusion while she gets worse? We want to look at things that haven't been thought of rather that keep falling back on what feel like convenient tropes that waste time she doesn't feel she has (or me either). I get scared and angry at the same time. Sometimes, I feel like they're tired of us calling and I feel like they're just waiting for her to die.
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posted by taz at 6:02 AM on August 15, 2020
posted by taz at 6:02 AM on August 15, 2020
We do have care coordinators in the U.S., though I have never worked with one. You could start by getting in touch with your main hospital's office of patient services to see if they have any referrals to independent agencies, or if they have care coordination in-house.
The problem is that you kind of need an M.D.'s perspective at this stage. This is really supposed to be your primary care provider's job, but they must not feel up to it. It might be that you could go for a second (third, fourth) specialist opinion and get lucky with someone who's interested in the big picture. Or switch primary care doctors and see who you get. Maybe go for an internist if you're currently with a family practitioner. But that would be blind luck. I assume that you've already gotten in touch with any friends/acquaintances with medical training.
If your wife is approaching 60, maybe tap into local senior services orgs? Depending on the specific grant that is funding a particular program at the agency, people under 65 may be eligible for services. You may find a case manager or an RN who is interested in medicine.
One out-there idea is to dig around any faith communities or other affinity groups (unions, immigrant organizations) you may be a part of. I know the New York Jewish community has a physician referral service that will help find specialists for people in need. Because of the Jewish connection, one of their listed doctors might be willing to do a general overview of someone's situation. Obviously not every community is huge and organized like the New York Jews, but all you need is one name, really.
posted by 8603 at 6:12 AM on August 15, 2020
The problem is that you kind of need an M.D.'s perspective at this stage. This is really supposed to be your primary care provider's job, but they must not feel up to it. It might be that you could go for a second (third, fourth) specialist opinion and get lucky with someone who's interested in the big picture. Or switch primary care doctors and see who you get. Maybe go for an internist if you're currently with a family practitioner. But that would be blind luck. I assume that you've already gotten in touch with any friends/acquaintances with medical training.
If your wife is approaching 60, maybe tap into local senior services orgs? Depending on the specific grant that is funding a particular program at the agency, people under 65 may be eligible for services. You may find a case manager or an RN who is interested in medicine.
One out-there idea is to dig around any faith communities or other affinity groups (unions, immigrant organizations) you may be a part of. I know the New York Jewish community has a physician referral service that will help find specialists for people in need. Because of the Jewish connection, one of their listed doctors might be willing to do a general overview of someone's situation. Obviously not every community is huge and organized like the New York Jews, but all you need is one name, really.
posted by 8603 at 6:12 AM on August 15, 2020
I am biased as a general practitioner, but if you have access to a general practitioner (i.e. a primary care physician or family physician) this is literally what we do.
posted by chiquitita at 6:14 AM on August 15, 2020
posted by chiquitita at 6:14 AM on August 15, 2020
Someone I know enrolled with a concierge doctor for exactly this reason. (The fee (~$2k/year for the one she had, I believe) puts the option out of reach for many people, unfortunately.) In practice they did just what chiquitita says, providing services as a regular general practitioner and coordinating things, but it took hiring the concierge practice to be able to find a doctor able to devote enough time and energy to get it handled.
I don't know if they tried or were even able to find a care coordinator first, or if they found the concierge option and ran with that. This is in the US.
posted by Dip Flash at 6:31 AM on August 15, 2020
I don't know if they tried or were even able to find a care coordinator first, or if they found the concierge option and ran with that. This is in the US.
posted by Dip Flash at 6:31 AM on August 15, 2020
Yes, in the U.S., a concierge PCP is what you want. Whether it will be solution only time will tell. For what they offer to a person with significant health issues, they are the best bargain out there. I know plenty of people who have them even without significant health issues, because it's so great to be able to have a doctor who works for you and is available to you just like your lawyer, accountant or broker, rather than the complete alienation of provider-client relations that the HMO system imposes.
Don't make COVID an excuse for your wife's providers. Unless you are in one of very small number of extreme hot spots, COVID has become a minor burden upon providers and facilities. In many cases, COVID has resulted in a net increase in availability of facilities and providers because of the delay/cancellation of discretionary and elective procedures and appointments, and the decline in many unrelated sources of morbidity and mortality.
posted by MattD at 7:09 AM on August 15, 2020
Don't make COVID an excuse for your wife's providers. Unless you are in one of very small number of extreme hot spots, COVID has become a minor burden upon providers and facilities. In many cases, COVID has resulted in a net increase in availability of facilities and providers because of the delay/cancellation of discretionary and elective procedures and appointments, and the decline in many unrelated sources of morbidity and mortality.
posted by MattD at 7:09 AM on August 15, 2020
The availability of concierge GPs depends a lot on where you are, and obviously on money. For someone I know, a concierge GP was the answer to this, so if that service exists where you are and you can afford it, I would definitely look into that route.
But for another person I know with complex medical issues, the answer was finding just a good regular GP/family practitioner who was willing and able to take on this role. Maybe ask around if anyone has a family doctor they think is good?
posted by LobsterMitten at 9:49 AM on August 15, 2020
But for another person I know with complex medical issues, the answer was finding just a good regular GP/family practitioner who was willing and able to take on this role. Maybe ask around if anyone has a family doctor they think is good?
posted by LobsterMitten at 9:49 AM on August 15, 2020
A friend of mine with a lot of different auto-immune disorders applied for and got accepted into being treated for no cost at the Mayo clinic. He moved near the center for a few months while they figured out a treatment for him and he moved home and continued the regimen with his local GP. Obviously this is easier if you're already near a clinic, but worth trying if nothing else is working!
posted by ananci at 11:21 AM on August 15, 2020
posted by ananci at 11:21 AM on August 15, 2020
Yes, if you are located in the U.S. I would really recommend Mayo Clinic or a similar option. Their method is to literally get the experts from each of the areas together to look at the issue and talk through it comprehensively, rather than each doctor looking at pieces and different test results individually. It takes time to get into their schedule, but once you are there it's a relatively quick process because the team of experts are really giving the person their attention.
posted by past unusual at 12:06 PM on August 15, 2020
posted by past unusual at 12:06 PM on August 15, 2020
If you are in the US, unable to get to something like Mayo Clinic, and a concierge PCP is out of reach or ethically questionable for you, try searching instead for a “direct pay” physician. The direct-pay model is similar to concierge in cutting out insurance for your primary doc and offering more patient contact, but with bigger patient panels, fewer or no alternative/holistic medicine offerings, and much lower rates than concierge—and they will usually work with insurance for everything outside their care (meds, testing, specialists). My chart reads like a particularly meandering episode of House and the $50/month I send to my direct-pay PCP is among the best money I’ve ever spent.
posted by LadyInWaiting at 12:10 PM on August 15, 2020
posted by LadyInWaiting at 12:10 PM on August 15, 2020
Back when I had health insurance through an employer, they had a special "Second Opinion" program for complex illness. You had to provide medical records, test results, etc., and then a physician reviewed all of them and interviewed the patient. The physician would then put together recommendations based on their view of the problem. If you have employer-provided health insurance, it's worth inquiring whether they have a similar program. You could check with HR (if they provide any support for accessing benefits) or with the insurance company.
posted by tuesdayschild at 12:21 PM on August 15, 2020
posted by tuesdayschild at 12:21 PM on August 15, 2020
As a fellow Medically Complicated Person in the United States, all I can say is you will be damned lucky if anything listed in this thread is available to you. I guess if you’re financially well off some of it might be within the realm of possibility, but most of us don’t have that kind of cash because of our medical situation.
posted by The Underpants Monster at 9:34 PM on August 15, 2020
posted by The Underpants Monster at 9:34 PM on August 15, 2020
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We also worked with what we call here a general physician for that level of cross-specialty guidance.
This is in Victoria, Australia; knowing where you are in the world might get you some more specific answers. Best wishes to you both, this is really hard terrain.
posted by third word on a random page at 5:30 AM on August 15, 2020