The first: an excellent question. It's hard to actually pay a doc for their time. We're all up to our eyeballs in the current system, including contracts with insurers that say things like "if this person is covered, you're bound to take what we are willing to pay, this person can't pay you extra to buy extraordinary services." It's not trivial at all to buy a doc's time. That said, the best method is to call their office and ask to speak to their practice manager. That's the person who is usually tasked with keeping an eye on finances, and has enough time and attention left over to hear things like "I need a non-clinical medical opinion, I am willing to pay for the doctor's time for an interview." That is assuming you are paying them like a consultant, and not paying them to provide an actual medical opinion for your wife. The latter gets gutted by insurance contracts (unless your insurer has absolutely no relationship with this doc, in which case, yes, you can pay them for their services. Some docs misread some state statutes as not allowing cash services for patients that aren't insured with them, which is both wrong and ridiculous.)
The second: how to find a clinical trial for your wife. Honestly, our job is to keep up with clinical trials once they're published. Clinical trials in recruitment aren't on anyone's radar - there's no convenient way of finding them (inconveniently: clinicaltrials.gov) and no value to clinicians to read such a list even if it existed. The only ones we are aware of are the ones that, as you said, are recruiting patients at our location. The people that benefit from publishing trial availability most are the pharmaceutical companies that will ultimately reap a financial reward, so they try to reach out to patients directly via advocacy groups and things like centerwatch. So,if I really needed to find one, I'd:
(0) Check www.centerwatch.com
(a) Call major centers specializing in my issue, since they're the ones that most trials will pull into recruitment and/or they're the ones originating the trials. For cancer, that means contacting the relevant physicians at Dedicated Cancer Centers such as Dana-Farber Cancer Institute (full list: http://www.adcc.org/).
(b) Most cancers have patient advocacy groups, and they're often aware of major trials underway for their relevant cancer. For instance, for Sarcoma, you'd check out something like curesarcoma.org (who have a dedicated clinical trials resource page (https://www.curesarcoma.org/patient-resources/sarcoma-clinic...).
That is frustrating to hear. I'd gladly pay a doc to spend the time to really get into things with me. Although I've learned to manage my problems, I'd prefer an actual solution to the current state of things.
I'm intrigued by a couple other things you said:
1) That we might be able to work something out with the practice to pay for consultancy. With my specific problems, I'm not even sure what specialist I need to talk to. I've seen many. They all try a couple things then point at a different specialty. Do you think someone could consult to at least narrow down which specialist can really solve the problem, or is that too close to a medical opinion?
2) That if I talk to someone not on my insurance, I probably could hire them. That sounds completely feasible. Say I did find someone with no relationship to my insurer - how would you recommend approaching them? Calling up and scheduling an appointment sounds like they'd expect me to just be part of the machine.
2) I would call the office - or drop by - and speak to the practice manager. Doc on the clock usually doesn’t have time to take a dump, and the front desk staff don’t really understand anything beyond “make an appointment.” *
* corollary to all of the above: front desk staff nearly always suck because we can’t reasonably invest in better. Since physician revenue is strictly number of patients per year * whatever the average reimbursement rate is, and since price caps mean our waiting rooms are basically always at capacity, ... a 40k/yr front desk means precisely the same as a 80k/yr front desk to our revenue, but that extra 40k comes straight out of our pockets. Thus, our staff is generally bottom of the barrel. At least in private practice, what little of it survives.
Second, unless you are extremely rich and can privately employ a doctor like a saudi prince would do, I do not know of any (non-forbidden) way to directly pay your doc for his time. Hopefully I'll stand corrected.
Third, and that's the most important, primarily allocate your money to proven treatment. Clinical trials are not designed to help participants. Be weary of what people try to sell you. But if you've been dealing with the healthcare system for long enough, you probably know all about it already.
I realize that's not very original, but godspeed nevertheless!
They then keep roughly the same business model, charging more or less what insurance would have paid them. They spend more time with patients because (a) not on the phone fighting, (b) though the patient pool goes down, they’re replaced by not having to pay for billing staff.
Very very few “concierge” practices aim for any more deviation from the standard business mode than that.
If you want someone to spend 40 minutes with you rather than 15, that’s your guy. If you want someone to spend a week analyzing all your old records and sleuthing it out, that model still doesn’t support it.
Would you be able to buy a day of one of those doctors' time? It sounds like it won't run afoul of insurance but also sounds cheaper than having a personal physician.
The German government mandates making public-option insurance available for everybody, and exercises some of control on drug and treatment prices. That means everybody is eligible for "standard" run-of-the-mill treatment for any illness. Referral to specialists is doled out by GPs, and there may be inconvenient wait time for non-emergency treatments. Prescribed drugs may be generic rather than top-tier. Various forms of quackery, i.e. drugs and treatments without good evidence of efficacy, are not covered by public-option insurance; examples include acupuncture and applications of chiropractic not directly applicable to skeletal motion, i.e. Palmer-esque "subluxation" treatment. Placebos are non-reimbursable here, but homeopathy is still covered in Germany so it's available for placebo use, though it's being excluded in other countries. Patients can opt for non-standard products, though, if they're willing to foot the bill personally.
Anyone with, I'll say, "upper middle class income," though, can opt out of public health insurance and sign up with a private insurance of their choice. For employees, half of the cost of private medical insurance is paid by the employer. Private insurers must cover at least the same drugs and treatments as public insurance but both commodities can be invoiced at much higher rates; 2x and more is common. This makes private patients like myself very attractive to doctors and hospitals, of course, and we get all kinds of preferential treatment. Yes, this results in a 2 class society with regard to medical treatment and I enjoy the opportunity to be in the upper class in exchange for paying higher premiums. I can access any doctor of my choice, including specialists, and those doctors can recommend any product. Private insurers also won't pay for just anything but there's more leeway and of course there's always the option of paying out of pocket for anything that's not reimbursed. While medical services will typically carry a steep (usually reimbursed) surcharge, drugs mostly cost the same for everybody and will be reimbursed if they pass muster as medically necessary and effective.
I've heard of clinical trials advertising for volunteers, but I think policy on those is similar to what you describe: a trial isn't a treatment option for just anyone who wants it.