HMO no wanna talky.

June 20, 2006 2:25 PM

How do I maintain communication while dealing with HMO?

My mother was recently diagnosed with an early stage, slow growing form of cancer in the uterine lining, which we were informed would give us the luxury of about a month to figure out treatment options. The OB/GYN who'd done the initial biopsy (and would be doing the surgery) referred us to a couple of doctors for an office consultation, and they discussed the options in detail. One of the doctors was very communicative and helpful. We took notes of what options were recommended (D&C and Progesterone IUD; or a hysterectomy), and it was understood that we would consider the options and would have to go to another specialist for further consultation before deciding on a path of treatment.

She's been living with multiple sclerosis for about fifteen years, so we had concernss. We consulted with her neurologist to go over treatment options and find out what conflicts, if any, might occur between hormonal and surgical treatments offered, and her MS medication (Copaxone) or even the MS itself. Stress on her, even emotional stress, can cause a flare up, and that's what we're trying to avoid.

Shortly after the first consultation with the two doctors to which the OB/GYN had referred us, the OB/GYN, who'd admitted no specific knowledge of MS, has been pushing for a certain path of treatment (D&C and Progesterone IUD), and his only communication with us on the matter has been through broken-english speaking assistants who only want to nail down the surgery schedule (to do what he's unilaterally decided).

The neurologist and other people we've talked to who've had cancer experiences recommended the hysterectomy instead, but they admittedly also lack knowledge one way or another specific to this case. We have tried contacting the OB/GYN's office to talk briefly about the path he pursues so aggressively, but our messages are only returned with solicitations to pin down a surgery date.

I'm no self-styled internet doctor, but even as a layman I want to hear that there's a logic behind the recommendation of one treatment over another, if only to know that there is a logic. The path the OB recommends may be the best, but the fact that he won't discuss it with us gives us no confidence in him. The stress of imminent surgery is stressful enough, which is why it's absolutely essential that my mom can be assured that all factors have been considered.

So...

Any recommendations for dealing with this doctor and this situation?

posted by evil holiday magic to health & fitness (7 comments total)

When my dad became gravely ill, he was assigned a nurse advocate by his HMO at my mom's request. She monitored his case and attended meetings and appointments with my mother to help explain the full range of options and, well, act as an advocate for him. See if the HMO will assign one to your mom, or find a freelance one who can fill the gap.
posted by boo_radley at 3:33 PM on June 20, 2006

Strange that you don't mention an oncologist. If you mom hasn't been referred to one yet, have her request (read: demand) that referral. I wouldn't let an OB make decisions about my mother's cancer treatment any more than a podiatrist or ophthalmologist. They can all be great at what they do, but cancer is not their area of expertise. Also, until an oncologist has said she's got so much time to make decision, treat the situation as urgent; don't let anyone put you off until even next week. People have died because they trusted the reassurances of someone who wasn't qualified to give them.

If her own doctors don't know of a specialist who is knowledgeable about both conditions, try calling the MS societies. Surely there have been other people with both diagnoses, so hopefully one of the orgs can put you in touch with someone who is qualified to give your mom expert guidance.

(Has your mom given the OB/GYN's staff a signed health disclosure form that authorizes them to disclose medical info to you? If not, that might be at least part of the communication problem with them.)

Good luck.
posted by nakedcodemonkey at 4:52 PM on June 20, 2006

EHM - Your profile indicates you are in LA. If so, I would echo the prior posts that suggest seeing a Gyn-Oncologist. Your mom's OB ought to pick up the phone and call them and get you in asap for a consult. It should be relatively straightforward to choose a path of treatment if you are being counselled by someone with more firsthand experience with this sort of cancer.

If your mom is in relatively good health o/w, a hysterectomy may actually go quite smoothly vis a vis her MS. Her neurologist ought to be able to talk further with the GYn-Onc about this.
posted by docpops at 7:55 PM on June 20, 2006

Thank you to docpops for pointing out that you're in LA. In that case, call UCLA for names of appropriate specialists. They're a major teaching hospital and tertiary care center.
posted by nakedcodemonkey at 8:30 PM on June 20, 2006

Sorry for the ambiguity in my initial post. The OB who did the biopsy and is pushing for the D&C/Progesterone approach, (I assume) was the one who'd referred us to the other two doctors with which we were appointed to consult soon after the diagnosis. One of them is a pelvic surgeon and the other an oncologist.

I liked the oncologist because he was willing to talk with us and help us weigh the options available. After the oncologist visit we scheduled an appointment to talk to the neurologist as soon as was possible and he cleared my mom for either treatment option (from a neurologist's perspective of an MS patient).

We left a message to the OB asking whether he thought the hysterectomy was a good or bad option versus the D&C. We get a message on the answering machine from his assistant, in broken English, saying we "need to make the appointment for the D&C, and not the hysterectomy." We've played phone tag with his assistant over the past three weeks, and he never calls personally, or leaves information with his assistant that would suggest anything specific about why he seems to be pushing one path of treatment over another. I don't even know whether he's aware (even though we told the other two doctors we'd consulted) that we had to get an appointment with the neurologist, or he just thinks we're stalling. In fact, I don't know ANYTHING from him.

I've looked up this doctor's name and found a record of a 1978 malpractice suit against he and the HMO based on a question of patient consent. He lost. He could be an OK surgeon for all I know, but his communication skills leave much to be desired.

I appreciate your help so far guys. This is a major source of stress for all of us. How does the UCLA route work with the HMO? Would it risk prolonging the situation? For reference, the HMO in question rhymes with "shnizer."
posted by evil holiday magic at 10:50 PM on June 20, 2006

Sorry, I have no idea what relationship "Shnizer" (*coughcough*) has with UCLA. Maybe none...? But don't let that stop you from calling UCLA (or Stanford, Mayo Clinic, etc if need be). The point is just to get names/numbers from them of appropriate specialists. Then you can give that to your mom's HMO doctors and request referrals to one of more of the names from that list. (I'm assuming that her HMO requires a referral before they'll cover any second opinion or outside specialist's services. But get the actual procedure/requirements from Shnizer.)

Definitely ask the HMO and/or hospital to hook you up with whatever patient advocacy service they offer. You need them. To move quickly, you need the assistance of someone who understands how to navigate the bureaucratic maze and can recognize when someone is hiding behind their medical jargon.

It's hard to know how to judge the info you turned up. But Kaiser--uh, I mean Shnizer--has tons of Ob/Gyns so there's no reason that she should have to go under the knife of one who keeps making your spidey-sense tingle. The patient advocate can explain how to get the case reassigned.
posted by nakedcodemonkey at 4:11 PM on June 21, 2006

P.S. As long as you're running records checks, you might find this helpful. If you need to dig deeper, try also requesting info from the Credentialing dept of the hospitals where he operates.
posted by nakedcodemonkey at 4:22 PM on June 21, 2006