effective communication with my doctor

rainnyc

I have wanted to start a topic about how we communicate with our medical practitioners—pitfalls, suggestions. If the treatment works, our relationships with our caregivers will last for a very long time, so it seems important that they hear us and vice versa.

Me: I have an oncologist who seems to know what she's about at one of the well-respected cancer centers. I have no reason to question my treatment at this point, and I don't see any reason to switch doctors. But I still feel that we're not connecting well in the 10 minutes I see her every three weeks. She's kind and friendly; for instance, I were to burst into tears (I haven't), I think she would be sympathetic. She's seasoned—maybe in her late 50s or early 60s?—and I like her. But she's awfully abrupt in her manner and tends to rattle things off in a way that assumes I know what she's talking about. I tend to assimilate things slowly and don't always think of questions immediately.

For instance, a few weeks ago, she was talking about options for seeing the surgeon, changing up the chemo—important stuff—and the whole time, I was lying with my chest fully exposed, staring up at the ceiling lights, so I couldn't see her face. It occurred to me afterwards that I simply should have said I wanted to sit up and take a few notes (I'm really good at thinking of things to say and do after the fact!). But the opportunity was gone too soon. So I need to come up with ways to slow her down when she's saying what will happen next. I need to ask more questions on the spot, but I also think she could do a bit more explaining. Too often, I try to keep what she says in my head and then come here or to other sites to find out exactly what she was talking about.

I also wonder: do others find that the real, practical suggestions come from the chemo nurses? My MO's office nurse was going on about the BRAT diet when I had terrible D in the first few weeks of chemo, which was helpful up to a point. But it was a chemo nurse who told me Imodium was fine. I was having a rotten time with the Benadryl, and it was another chemo nurse who suggested hydroxyzine. Note my MO was fine with both.

Anyway, I feel as if medically I am in the right place, and if all goes well will have a relationship with this doctor and medical center for some time to come. I would love to hear of other problems people have had with communications with the medical staff, as well as solutions any of you have found. Thank you!

vlnrph

Yes, I think the experienced nurses and oncology support staff are worth their weight in gold! Too often, the doctors are seeing so many patients, there just isn't time for them to go into great detail with each & every one. This situation will become worse in the future as an aging population develops more cancers and not enough physicians are being trained to take care of all the survivors.

For some concerns, I will communicate via electronic media (email or the hospital medical record system which uses a function called MyChart). Other times, a phone call gets the ball rolling. In both cases, a triage person is involved and will either answer or pass the issue along but let me know that it has been sent forward.

You are wise to do your own research. Choose reputable sources and realize that we have to educate ourselves as much as possible. My clinic has a medical library with people who will help you look thing up and print out articles or information sheets. It really helps to have things in writing which can be reviewed whenever needed.

For drug questions you can talk to a pharmacist. The other factor in going to an academic/teaching center is that residents & students often are assigned to see you and can also provide general background, telling you about lab reports, etc. They may not be allowed to present treatment plans or feel comfortable guessing at your specific prognosis but can discuss why your calcium blood level might be elevated, for instance, or how often you should have your bone density checked. It's good practice for them since they're still learning too...

octogirl

I think many of us find effective communication to be difficult; you are definitely not alone in this! Just a few thoughts:

first, definitely also get to know the support and nursing staff and ask them questions also. They do have a lot of experience and can be very helpful, and yes, they may be a little less hurried. Think of the group as a team. I don't need the doc to give all the answers if the nurse can give some, but they definitely need to communicate well with each other as well as with you! Ask them to pass your questions along to the doc, and ask to have the doc contact you if you think it is important. But for practical suggestions they can be very helpful. For example, my bs had very detailed written instructions about the pain med regime. However, I always have a big problem with constipation even on OTC pain meds, so I asked her nurse about that. Nurse replied, 'of course, take a stool softener'. It seemed obvious to the nurse that it was ok to do so, in fact that it was a good idea to do so, yet it wasn't noted in the instructions. Maybe they thought it was too obvious! In any case, I took them and it made a huge difference!

I recently saw my MO for the first time, but first, I spent quite a bit of time with the Nurse Practitioner who made sure that my chart was updated, correct, etc. I had an interesting experience with that: NP also did a physical exam and when she wasn't totally happy with how one of my Lx incisions was healing she took pics to show the doc and then told me I could get dressed for the first meeting with the doc. MO then came in, apologized, and said that normally he would rely on the pics, as he thought it was awkward to have me lying there with no top for our first conversation (sounds like you can relate to that), but that the pics concerned him enough that he wanted to have a look at the incision himself. (He was aware my bs was out of the country for a week and wanted to be sure it didn't need to be addressed before she got back) So, he had me remove top, took a look at incision, gave me instructions as to how to address it till bs got back, and then left me alone (with hubby) to get dressed again before we discussed the systematic treatment plan. So, a long winded way of saying, yes, it is weird to lie there half naked while the doc talks, and next time, I'd say that up front and just tell doc you want to sit up and take notes. I wouldn't be surprised if my doc's sensitivity on that issue was a result of something someone said to him!

You can't keep all this stuff in your head, and they shouldn't expect you to. I recommend asking if you can take notes up front (bring notebook or an iPad or some such), and if possible, bring someone with you to the apts. I think that will help a lot if you otherwise have confidence in the team. Be sure to tell everyone that you'd like to do this, including the nursing staff.

Another thought: write your questions on the notepad, iPad, whatever in advance. At the end of my apts with my docs, when they ask me if there are any questions, I look at my list of questions and mentally check off whether each one has been answered, and if not, it helps remind me to ask it. I also make a point of saying, "I don't know what a xxx is, can you tell me?" if there is something I don't understand. For example, in this last apt the NP was going over blood work and said my lipids looked fine. Me: "what's a lipid; I am not sure I understand what you just said." NP reminded me that meant cholesterol levels were fine. Ok, I knew that on some level, but with all the stress of having all the information barrage it just didn't register. It felt better just to ask and get the quick answer.

Best of luck to you with the process!

Octogirl

rainnyc

Thank you for these thoughtful responses. It does seem as if there are a number of paths to explore. My MO is going to be on vacation for my next appointment, so I'm to see a colleague of hers. I'm curious how the communication will go with another doctor, not because I want to switch but just to see how it feels to talk to someone else. But I realize the next time my own MO starts to give me complicated, rapid-fire info while I'm lying back on the table that I MUST tell her what I'm feeling, and that I have to face her and take notes. I have to ask questions, and I have to figure out how to follow up (via email or phone or whatever) when there are things I don't understand after the fact. The MO uses her office nurse for most phone calls, which is fine, but there are definitely times when I would prefer to hear from the MO, so I need to figure out how to be more assertive.

It is interesting the facts that one puts together from various sources: chemo nurses, office nurses, physical therapist, social worker, even the guy who sold me the wig, who has seen a LOT of cancer patients from this hospital. I guess I'll have to weigh the various opinions of the surgeon and MO and make sure they're all on the same page.

Thanks again; I really appreciate your thoughts!

Brightsideplease

Hi rainnyc,

I switched doctors for the same reason. My new Onc is better, but still not as "human" as my surgeon. I just need to be able to clearly understand what's being said, and chemo brain is NOT helping. My original doc almost seemed to talk to herself more than me. Don't be afraid to switch if you like the other doctor more.

madhousemom

i was good with my doc until the other day she suggested we change chemo. she gave me a printout of 5 chemos and told me to pick one. i was dumbfounded. how do i know what to pick. now i dont trust her anymore and i am checking out cancer center of america in philly.

rainnyc

Madhousemom, that sounds like an odd thing to do. Two things: If you search Cancer Treatment Center of America on this site, you'll find some really negative reviews. I think they are a for-profit hospital and don't take you unless you have top-drawer insurance. I'd be really careful.

Regarding your current oncologist, at your next appointment, I'd arrive armed with a list of questions. It does seem strange that she would ask you to change the chemo. I'd be asking: Why do you think it's a good idea to change chemo? What are the pros and cons of these various drugs for my own situation? And most important: What is the standard protocol for the particular cancer and stage that I have? You need to get her talking about what she thinks matters for you. If you're still not satisfied after that conversation, then I'd try for a 2nd opinion. But I am not sure I'd go with Cancer Treatment Center of America. Are you in Philly and being treated there? Then why not go to Johns Hopkins or MSK for your 2nd opinion?

Regarding my own situation and the reason I started this thread: I did start bringing in lists of questions to my MO appointments. It goes much better when I do that, and I also feel more confident and able to tell the doctor when I need her to slow down and explain something--thanks to everyone who posted above.

vlnrph

Madhousemom reminds me of when I was in premature labor and the ob on call gave me the choice of agents to use for stopping the contractions - he knew I was a pharmacist, however I still expected him to be the decision maker! As it turned out, we were too far along so although our son was born 8 weeks early, he was OK & did well.

Did you have too many side effects from the current chemo or is there another reason to consider a change in therapy? I can understand picking between two or maybe three options but five seems like too many for a lay person to sort through. Perhaps the clinic has a nurse who has more time to explain all of this.

I would also be really cautious about CTCA. Their promotional methods with expensive TV ads featuring anecdotal success stories are too slick for me. I like rainnyc's suggestion of Johns Hopkins or Memorial Sloan Kettering.

madhousemom

my worry is not that she is changing chemo. my worry is that she gave me a list of 5 chemos and asked me to choose one. i dont know what to pick shouldnt she pick and suggest. i live in nj i have lymphadema and thats the only place i found that can fix my lymphadema by accepting my insurance. i have obama care insurance nothing special. i am poor not rich

rainnyc

Madhousemom, where are you being treated right now? I think you need to go back to your MO and ask why she thinks you should make the choice. Are you saying that Cancer Treatment Centers of America is the only place that accepts your insurance for lymphedema or your current hospital? Don't worry: plenty of us have Obamacare and aren't rich. But talk to your MO and ask her why she gave you this list of five choices and why she thinks you should choose. Then let us know what happens!

marijen

I thought Obamacare has limited where you can get cancer care? Less choices than before

rainnyc

Marijen, it has, because the ACA networks tend to be narrower than the ones you can get through work, and at least in my state, you don't get out of network benefits. This is a problem at the moment as the only ACA insurer in NY that included Sloan Kettering has just folded. But aside from that detail, there are some decent plans on the ACA exchanges and if it weren't for the necessity of staying at Sloan Kettering, I'd be completely satisfied with one of them. I was very satisfied with the plan I had this year.

Kessala

In the days leading up to my oncology appointments I write down questions and suggestions in a small "steno" pad. I'm dating myself here. How many of you know what I mean by a steno pad? LOL

Anyway, I arrive with pen and paper and take notes as Doctor is talking. I don't jump onto the exam table until all my questions/suggestions have been addressed. I find once I'm on that exam table I can't really have a dialogue with the doctor. And right after the exam Doctor is washing his hands and getting ready to say goodbye.

I also write down what I'm expecting to have done in the treatment room. I write down any medication refills I plan on buying from their on-site pharmacy. I make a note to myself to schedule future appointments. I don't leave the clinic until I've accomplished each step.

I leave nothing to my memory. It seems once I'm in the cancer clinic my mind goes blank because I'm stressed.

Kessala

tangandchris

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