Is this normal medical tomfoolery or something beyond?
December 28, 2022 10:18 AM   Subscribe

I have been dealing with some serious health stuff over the last few years. The specialist I'm working with has been difficult. My father (who is a family doctor) says this is normal and to suck it up. My husband (who is not a doctor) is incandescent with rage and wants us to switch practices. I am sick and scared and could use perspective. (also some GI details to follow...)

[I am not firing on all cylinders at the moment so this is going to be a bit of a brain dump.]

I have an immune disease that also causes GI issues. I have been having diarrhea and abdominal spasms for the last 6 weeks. I am steadily losing weight. I have been seeing a GI doctor over the last few years for help with these issues. She is exceptionally hard to reach but generally pretty good once I get her on the phone. But it that can take 2 weeks to a month to contact her and it's just getting harder. She frequently seems to get frustrated with me trying to reach her and tells me to go to the ER without actually speaking with me. That's what her nurse just told me to do in her most recent e-mail.

I am immune compromised and prone to C Diff and respiratory infections. The ER is not a great place for me. That said, this doctor caught my first C Diff infection when other people missed it and most of my specialists are difficult to reach and fairly non-responsive. I'm seen at Mass General in Boston which is supposed to be a really good system. My sister-in-law who works for a different major hospital system says that this strikes her as unusually poor patient care across the board. I could probably arrange to see a different GI doc for a second opinion or even switch practices or hospital systems.

But my father says that if I try to get a second opinion the GI doc will be upset and I may be left without a doctor at all. (My dad and I have complicated relationship around my medical care but both of us are doing our best.) I want to be stoic and not expect people to bend over backwards for me, but I'm also in pain and frightened and feeling pretty helpless.

So my questions: What is reasonable to expect from a specialist in your opinion? Both in this specific instance and more generally? What steps might you take in my circumstances? (I'm feeling pretty awful so if the feedback is that I am indeed in the wrong here please tell me gently.)
posted by jeszac to Health & Fitness (15 answers total) 2 users marked this as a favorite
Do you have any sort of patient portal where you can send her a message? My husband is immune compromised (lung stuff) and always gets an email response from his doctors/specialists within a day or so when he has questions.
posted by jabes at 10:25 AM on December 28, 2022

Response by poster: I have been using Patient Gateway extensively with no luck. Hope you and your husband are well!
posted by jeszac at 10:27 AM on December 28, 2022

Just as a general point: There seems to be such a nationwide shortage of medical personnel (including office staff) in the US right now, plus the increased strain on the system from Covid, the flu, and RSV, that what's reasonable and what's likely to happen have been, in my experience lately, really far apart. Offices that used to be able to get back to me in a few days are now taking months.
posted by lapis at 10:27 AM on December 28, 2022 [3 favorites]

Best answer: I wonder if your father has had to do a lot of handholding and crisis management when patients of his have tried to see specialists who treat them poorly, leading him to believe this is just how specialists behave. Because your specialist's behavior is not shocking, but it is unreasonable. Any doctor who would be upset by your seeking a second opinion is a crappy doctor. Seriously. You have a complex, life-disrupting medical condition that puts you at higher risk if you go to an ER--you need excellent medical care (and consistent access to it), with options for handling unexpected or emergency situations safely. You are a poor candidate for ER care. Your doctor may be a jerk, or may be frustrated by her inability to manage her caseload, or both, but she shouldn't take her frustration out on you for... trying to get medical care when you need it.

Specialists who care for patients with chronic illness need to include ongoing access in their plan of care. For instance, a patient with autoimmune flare ups might be well served by having a prescription for prednisone on hand to use when needed (rather than having to schedule an appointment when a flare up comes on in order to get a course of prednisone), whereas it isn't appropriate or necessary to give a non-chronically-ill patient a prednisone script for future use. Patients with chronic illnesses can expect to need certain forms of medication and care, and can be trusted to have a more self-directed role in their own health management than patients who are generally healthier. I believe you should seek a second opinion (or a third, or a fourth, until you find someone you like) and make it a goal to discuss ongoing management of symptoms including plans for different types of flares--i.e., what's the general baseline plan, what's the plan for a flare up, how will you communicate with your doctor if a flare up is worsening, and when is a flare up bad enough to require a higher level of care (and how will you safely access it)?
posted by theotherdurassister at 10:38 AM on December 28, 2022 [35 favorites]

So, it sounds like your issues are chronic problems. Is it possible for there to be a treatment plan with your primary care provider? That is, is there a specific reason you need to speak with the specialist on all of these occasions, rather than get a prescription for [x] or screening for going to the ER, which your PCP can do? Or is the issue that you're currently getting unpredictably worse?

The system is under a lot of stress right now, but it also sounds like this problem antedates the pandemic, yes? Your doctor should not be leaving you feeling abandoned. That stress itself is not good for you! I think you should be looking for another. Your current specialist is very unlikely to care. When trying a new doctor, I would definitely discuss expectations about communications as part of your care plan. Not an elaborate story of your experiences with your current doctor; rather, just say "xyz has been happening on a recurring basis; when it does, that seems to call for me to talk to you about what to do. Under the current circumstances, how long should I expect to have to wait to hear back from you?"

I'm sorry you're going through all this. It sounds miserable.
posted by praemunire at 10:45 AM on December 28, 2022 [4 favorites]

It is completely, 100% okay to change to a new specialist. And you should.
posted by mochapickle at 10:45 AM on December 28, 2022 [3 favorites]

Best answer: I don't know about anything else, but this -

my father says that if I try to get a second opinion the GI doc will be upset and I may be left without a doctor at all.

would be unacceptable in my opinion. Since when is it okay for doctors to get offended by second opinions? (All the more so when the reason for the second opinion is the main doctor's lack of available appointments?) That's not to say your doctor might not react this way, because there's no shortage of totally unprofessional narcissistic doctors out there, but it does make me question your father's approach somewhat.

I think in the long term I'd at minimum try interviewing other practices and finding out what their standards are regarding how quickly they get back to patients, whether they'd be able to take your particular needs into account (like trying to avoid sending you to the ER), and so on. If you're considering other networks, see how many specialists they have in the fields you need, how quickly you'd be able to get an appointment, how they accommodate second opinions, etc. Gathering information can't hurt, and you'd want this information before making a decision.

Ideally you'd want to wind up with a practice/network that is both responsive and good, and if that's not your current doctor then ideally you'd also be able to consult with your current doctor if needed for a second opinion. (If you left their practice, you could - to massage their feelings, which may or may not be delicate enough to need it - let them know it was with reluctance and strictly because you need more frequent care, and absolutely not because you don't trust their medical judgment.)

But all that is for later. Right now it sounds like you're dealing with an acute situation, so I'd (a) find out whether there's another doctor who could see me quickly, (b) possibly also ask current doctor again while reminding them that going to the ER should be a last resort for you, and (c) evaluate whether the risk of not going to an ER right now is greater than the risk of going there. Since you're feeling so out of it, I hope there are people who can help you with these decisions and legwork. And honestly I hope your father is also working whatever connections he has, not just telling you to expect bad treatment.
posted by trig at 10:55 AM on December 28, 2022 [5 favorites]

Best answer: My wife's latest GI-related saga involved her seeing a local GI, a Boston GI, and about six other tangentially-related specialists, all with the wholehearted encouragement of her local GI. I agree completely that if a specialist who can't respond to your contacts in anything like a timely fashion throws a tantrum about you seeing someone else, she's a terrible fucking doctor.

Do you have a) a GP and/or b) a rheumatologist? It sure sounds like your condition is not adequately managed by this doctor, and getting another GI specialist may be a good idea, but you also might consider seeing a rheum if you're not already just because they might have some other angles to work on the overall autoimmune situation. (Finding a rheumatologist within six months, however, is... not gonna be easy. So if that sounds like it might be work checking out, start calling now.)
posted by restless_nomad at 10:57 AM on December 28, 2022 [7 favorites]

People change specialists all the time for all sorts of reasons (insurance, location, appointment availability, bedside manner, gender of physician, personal recommendation, specialist recommendation and on and on) please don't stress. I don't know physicians who have the time to even care these days. Unless you end up seeing a large number of the same type of provider it won't send off any red flags.

In terms of your physician recommending the ER:
It is also possible that your GI doc may be able to escalate an appointment for you after an ER visit, which might be part of why they were recommending it, however I can't be certain of that and not all hospital systems work the same way. It could also be that based on the descriptions of your symptoms and the tests/imaging you need that doing through the ER is more expedient that she'd would need to make a decision on paths of care. I cant know your doctors philosophy for recommending ER care l, but those thoughts may be coming into play.

Wishing you luck.
posted by AlexiaSky at 11:19 AM on December 28, 2022 [1 favorite]

Best answer: Chiming in to add that my husband is being treated at MGH for unrelated (neurological) health issues, and some departments have been AWFUL about contact. After he was discharged from nursing I was told to get him a neurologist, so I went back to the neurology department that had treated him inpatient. I called them every other day for more than a month and never got past an answering machine or answering service. I ended up calling the hospital ombudsman, who apologized and said they'd look into it and never heard anything again. We did not get a neurologist till a year later when another health problem took him to the ER.

We did get a one-off appointment with someone at the Brigham, though, at a time when we needed one. If the drive hadn't been so awful we would have made her our primary.

Short answer: in my experience, the care we've gotten at MGH has been stellar, but trying to get care there in a non-urgent situation has been brutal. Both times we had to enter the system through the ER, which was chaotic in itself. There are a ton of great hospitals in Boston.
posted by gideonfrog at 11:30 AM on December 28, 2022 [1 favorite]

Best answer: First, I don't think the situation you are describing is typical, but it sounds like as much of a problem with the office/practice the specialist works with as with the specialist themself--If the specialist is as busy as they obviously are, there needs to be an established way of triaging urgent patient communication and scheduling an urgent appointment. It sounds like either that doesn't exist or it isn't working well enough. Have you tried just calling whatever phone number you call to make an appointment and explaining what is going on? The receptionist answering the phone might know how to get you on a cancellation list for an appointment or know whether there is another doctor in the practice you can get in to see more quickly or something like that.

Also, I wouldn't hesitate to change specialists or hospital systems. Being a patient of the best specialist in the world doesn't do you any good if you can't communicate with them or get an appointment when you need one.

This isn't a short-term solution, but I agree with the other suggestions that you might want to establish a relationship with a GP or Primary Care physician if you don't have one already. Even if they don't play a huge role in managing your chronic condition, they can help manage and coordinate your care and give you a way to be seen by a doctor (and get a more urgent referral to your specialist) that doesn't require going to the ER. And if you already have a relationship with a doctor like this, send a message or make an urgent appointment with them NOW and see if they have any suggestions about what you should do to get some help with your current issue.
posted by mjcon at 11:42 AM on December 28, 2022 [3 favorites]

I'm sorry for your chronic illness. That must be frustrating.

It's not completely clear from the question, but one thing that can help you get access is making sure that it's billable.

Suppose that this doctor had 200 patients that can benefit from a quick chat on the phone to tell her their latest symptoms and get her advice. Let's say she takes 5 minutes to review the chart, 15 to talk, and 10 to write up the conversation and maybe add a prescription, for a total 30 minutes per call. If each patient calls for advice once a month, that's an extra 25 hours per week of unpaid work.

This may not be the case at all, but if the problem is trying to get her on the phone for an informal chat and advice, then you might encounter better results by scheduling an actual consultation. If she's scheduling several weeks or months out, just get on the calendar, tell them that you are available on short notice, and ask them to call you when someone cancels. Maybe even proactively schedule a consultation every 3-6 months.
posted by dum spiro spero at 12:58 PM on December 28, 2022 [4 favorites]

Best answer: A second opinion is perfectly reasonable and a quality doc would not take offense. A rheumatologist as your PCP may help a lot.

I'd add: please talk with your sister-in-law about being seen in her employer's network quickly for the current issue, and the best way to schedule that second opinion.
posted by Iris Gambol at 1:00 PM on December 28, 2022

Best answer: Echoing what others have said - this doesn't sound uncommon, but it does sound awful and worth addressing. Have you considered a concierge doctor service? Fees can be high, so they're not worth it for generally healthy people, but if you have frequent questions or needs, it can be a big boon. My doctor charges an annual rate on top of charging insurance for each visit, but she responds fast and takes more time to listen. She's also well versed in chronic illness. Hope you get the help you need soon!
posted by equipoise at 1:21 PM on December 28, 2022 [1 favorite]

A specialist, you're not going to hurt their feelings if you move on. Because you are just one more patient in a neverending line of patients. I understand your father's point of view. But remember, he is speaking as a family doctor who sees the same patients regularly and develops a relationship with them. With a specialist, sure you might develop a nice working relationship. But, you see them only if its necessary and then only until you don't need to anymore.

I see a neurologist every year. For about ten or so years, the doctor I was assigned to asked me if I was still in school and what I was studying. He was a nice man and we got along. But even when I was over 30, he was asking me the same questions he'd been asking since the time I was still in school. That's how involved he was with me.
posted by Stuka at 2:24 PM on December 28, 2022 [1 favorite]

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