How to talk to doctors
Anyway - again, I know this isn't a medical forum ... but if there are people who've dealt with serious illness themselves or in someone close to them - is there a way of talking to doctors, is there a trick to this?  |
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| "Tell me what you are thinking/looking for"
and "How will the results of this test affect my treatment" are favorite questions of mine. Good luck and I hoope for the best for you and your SO. |
| Sorry to hear Fred is not well.
The first thing I'll say is it is normal to have difficulty sorting the info out at this time. Two reasons, 1. you're anxious and that effects our ability to comprehend info and 2. it sounds like the doctors dont know yet either. Many times the doctor is not good at communicating what they know, so that's not your fault either. I always write my questions down before I go to the appt otherwise I forget to ask some of them. Ask the doctor to explain to you exactly what they think is going on and if you dont understand tell them and ask them to explain again. If its still early days and they say they dont know yet then explain that not knowing anything is freaking you out and that you would at least like to know what they are testing for. They may be trying not to scare you but it sounds like not knowing is scaring you anyway so tell them that you would like some more info as you are finding the uncertainty is making you more anxious. You are entitled to an explanation as to what the doctor thinks and what the tests are for and any risks involved with tests or treatment. Be polite but firm and ask what do you think the problem is, what will this test tell you, are there any risks with this test, what is the next step once we get the results from this test? If you're really struggling it can help to take an advocate along to appts, someone you trust who isnt as emotionally involved so they are more able to ask the logical questions. It is especially helpful if they have some medical knowledge. If you find a doctor who you feel comfortable with and who explains things then try to stick with them at least for regular updates as to what's happening. Hope this helps, I find it really hard not knowing what is going on, I have been there with my SO and I was so anxious I surprised myself at all the questions I didnt ask and wished I had. Good luck! I hope everything works out for you both. |
| If both you and Fred want the facts, make an appointment to sit down with the main doctor handling his case. Tell the person scheduling the appointment that you have several questions you'd like to ask about Fred's condition. Before the appointment, sit down and write out all your questions... benefits and risks of treatment or surgery... side effects, recovery time, etc. Make the list over a couple of days because you'll think of at least one more question you hadn't yet written down. Then ask your questions until your satisfied with the answers you've gotten. You are paying the doctors and hospital for a service and most importantly, you need to know all the facts so you can make informed decisions. If you don't get a clear answer, tell the doctor that you still do not understand and ask them to please explain it again.
My husband was diagnosed with prostate cancer in October... 23 treatments down, 16 to go. I know how difficult and scary this is. I'm wishing both Fred and you the very best. |
| Oh man - thank you guys! Fred's so sick - and I'm anxious & overwhelmed, I'm not thinking clearly - and your advice helps so much. I'm afraid of offending the doctors by being too assertive with my questions - we're so very much at their mercy. And the conversations with the doctors seem so ... weird, like they've practised what they want to say and then they quickly usher us out the door ....
Like the last doctor. He said "Fred has a stricture around his bile duct ... talk, talk, talk ... actually the stricture is a tumour ... talk, talk ... oh, and the cells they culled from the tumour are suspicious of cancer, we'll call you with the date of the next procedure." End of appointment. Reading between the lines, putting two and two together - I'm afraid that maybe that adds up to bile duct cancer. But no one is saying the C word yet, and I really get the impression that they don't want me to ask. 
"Tell me what you are thinking" is a good one though - I'll try that. And I'll start making a list of questions, including "Can I have some valium?"  |
| I'm sorry you're going through this... definitely make sure you ask all the questions that come to mind, and even insist the doctor explain anything you're not asking about....
Explain to them you and Fred can focus on being well and getting better from whatever it is a lot easier if you can fully understand it and eliminate some of the stress by not being kept in the dark. |
Oh my 
There's another option that others haven't raised, I don't think 
You are an SO and I don't know Canadian law, but up until recently down here SO's have had not right to info on a patient. It was strictly family only. You might have to ask if your SO relationship is limiting communication or what the heck is going on!!  You can preface that with, "I know you may not be certain yourself, but please give me more information. Fred and I can deal better with the situation if we are better informed."
Just a little humorous note re: this, a female friend lives with a guy, not married. Most people assume they are married, but due to finances they aren't. Anyway, when doctors found out they were not married they began excluding her from the information stream............except the guy is partially deaf, not well educated (thanks to Nazis burning down the school house) and "from the Old Country" with a thick accent. When he was rushed to the hospital for heart problems, the docs and nurses asked if she was his wife, "No", then "sorry you can't come in." The medicos kept asking him questions re: meds, etc and kept getting conflicting answers or just plain strange answers. Gus couldn't hear so was faking answers. Finally in dispair a nurse appeared and said, "Would the lady who accompanied Mr........please come forward." My friend walked up and said, "Bet you are having a little trouble talking to him huh?" "We aren't sure if he's having a stroke or just obstinate." "No, he can't hear you or understand you, he's too cheap to get a hearing aid and his English is poor." |
| when you see the doctor and they start using the medical terms, just just give them your best wobbly smile (no one expects a real smile in this situation) and say could you say that again in plain terms that we can understand please? don't be afraid to ask questions about anything you both don't understand .........
sending healing prayers your way  |
| With the HIPPA laws in place, you need Fred to sign the forms indicating that you can have access to his medical information. Doctors office and hospital.
From working with Oncologists, I can tell you that people hear the word cancer and their hearing shuts down. It is very helpful to either record the conversation with the doctor so you can listen again or take another person with you. Abnormal cells doesn't always mean cancer. It can be a pre-cancerous cell and removal is the best treatment. Technically, a tumor can be benign or malignant. The main difference is that a benign tumor won't spread to other parts of the body, though they can grow large enough to cause problems such as pressing into another organ. A malignant tumor is capable of spreading to other parts of the body if it hangs around long enough. Unfortunately, to find out what is going on, it takes lab work, biopsy, scans and lots of consultation. Sometimes, it is very clear fro the outset. Sometimes the doctors talk to lots of their peers for their input. These guys are among the brightest of the bright, but their people skills aren't always the best. IMO, I would take the smarts over the people skills. If you really can't communicate with them, get a second opinion or a new doctor. |
| My hubby was seriously ill last year and I found the only way I was getting info that I could understand (and if I couldn't I would write the info down, run home and get on the net to see what I could find then go back and query them some more) was to just keep asking ... yes but what do you mean by that... or what is the purpose of that medication... at any point I felt that I was not being given enough info. At one point I was fed up and asked for an appointment with the head doctorr in ICU (which I got) and that did help and he even phoned me at home to tell me what was going on a few times after that..So stand your ground , ask your questions untill you feel you understand and good luck. |
| AHA! That may well be the weird vibe I'm getting from the doctors: they have no idea who I am! I just kept showing up for appointments and procedures - maybe I should introduce myself before I start asking questions, silly me. I just assumed they knew we were common-law and that would be enough.
Thank you all for the advice and support. I felt sheepish asking for help on an OES forum - but really, you've helped more than you can know. Quote: Abnormal cells doesn't always mean cancer.
That is the best news ever - it gives me this little thing I'd forgotten about: Hope. Oh, and because this IS an OES forum after all - funny thing, about a year and a half ago Fred gave me the choice between a diamond ring or an Old English Sheepdog puppy. Naturally I chose the puppy. I mean, of course right? So Fred remains my "common-law" & Fitz is my beautiful shining diamond. He makes me happier than any old ring could. OES ROCK! 
Again, thank you all. |
Quote: He makes me happier than any old ring could. OES ROCK!
Well that's the obvious right choice!  A OES puppy wins hands down over any old rock on the finger.
Good luck and keep us posted as to how Fred is going. |
| I asked my husband about this (he's a doctor), and asked if when he went in to speak to patients or their families if he used doctor-speak or normal human speak. And what he thought most doctors did.
He said he typically uses normal human speak, or if he uses the correct term for something he'll follow up with the lay term. He said doctors (well, most of them) aren't trying to be all special sounding and confuse patients with terminology since it's not in their best interest since most likely they'll have to spend more time repeating it or trying to get them to understand. He said to always feel free to ask questions, and if it seems like the doctor is rushing through the visit, it's probably b/c they're busy, not because they're not wanting you to ask questions. He said sometimes they are so busy and rushed that it can start to feel that way to a patient too, which isn't their intent. And also that sometimes they'll forget that a doctor term they always use isn't commonly heard in the real world, so again not purposely trying to confuse you. And I agree with whomever said to write down any questions you have, especially since doctors do have limited time per patient, so that way you don't waste time with Ums, and trying to think of what you wanted to say. And write down the answers to your questions. I know there've been times when a doctor has told me something and I was sure that I could remember it. I get home and hubby says, what did the doctor say? And I'm like, well, it begins with a "T"... |
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