"positive communication" w caregivers - examples?!

This section is for discussions with other women who have probably been through the same signs/symptoms that you may be experiencing. Please note, we cannot offer medical advice and encourage members to discuss their concerns with their doctors. New members, come on in and introduce yourself!
blythe
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Re : "positive communication" w caregivers - examples?!

Postby blythe » Mon Mar 20, 2006 04:15 pm

Thanks everyone for your replies so far! You have good suggestions! I've been reading about pre-eclampsia, pregnancy, natural childbirth, and other childbirth complications, for about 2000 hours since my son's birth, so hopefully that will make a big difference. Though I do get the feeling from some medical people that they would rather I just do what I'm told and leave the decisions to them. Sorry, not this girl [:)].

I've been reading this board ever since I had my son, and it's always the first place I look when I have a new question - usually it's already been answered! I'd actually bet other threads have dealt with my question already, but wanted to dip my toe into the pond as I look for extra support with this pregnancy. I'm very glad - though not surprised - to find it here[:)]. Thank you all.

PS - I love the idea of putting "explain things or her bp goes up" in my chart! It's hilarious and practical.


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caryn
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Re : "positive communication" w caregivers - examples?!

Postby caryn » Mon Mar 20, 2006 11:45 am

Congratulations on a sticky pregnancy, Blythe!

My thoughts on this topic: This is such a complicated disease that doctors don't feel they have the time either to translate from the jargon into clearly understandable English, or to teach the background in biology we'd need to understand it. Plus, they're scared that things are going to go very wrong, and want to get moving *right* *now* before complications occur, so they don't want to take the time to explain.

I agree that lots of education about PE can help you to ask questions in a way they feel like they can answer. Besides that, it makes you better able to be your own advocate with this disease.

Since you've found an OB you're comfortable working with, why not ask her to put a note in your chart for the rest of her practice that says "Explain things to this patient or her bp goes up higher!"

deerhart
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Re : "positive communication" w caregivers - examples?!

Postby deerhart » Mon Mar 20, 2006 11:42 am

I perosnally think that a lot of it is the knoweldge you arm yourself with. You have to KNOW that your not getting all the answers and where to dig deeper. If you don't know, your just as likely to take the doc at their word and then find out later it may or may not have been correct or thourgh information.

anathor21
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Re : "positive communication" w caregivers - examples?!

Postby anathor21 » Mon Mar 20, 2006 07:07 am

To a large degree I think that the answer really is to develop a relationship that works with your doctor. IF you have a choice of doctors you may be well served to visit with more than one and see which one you like best - for me it would be the one willing to meet and talk to me without one hand on the door and eyes on the next chart [:)]

In any case, I think what has worked well for us has been to learn everything we can so that we can ask questions and be able to understand the answers a bit without forcing the doctor to teach us all the background.

When we ask the questions we try to state our biases up front and not make it sound like a challenge to their knowledge/skills. I.e. instead of asking for XYZ instead of ABC treatment, I would approach it as "I've been told/read/researched that ABC is nicer/better/more effective than XYZ, can you help me understand why it isn't the best choice for me now?"

Overall it's about relationships - there has to be a mutual respect in order for it to go well - if you don't have it, perhaps find another doctor. If yo can't change doctors, then you have more of a challenge but I don't think it is hopeless - I would just be very upfront with concerns including the lack of a feeling of trust (yeah, easy for me to say eh?).

Hope something in this is helpful to you!

missgamecock
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Re : "positive communication" w caregivers - examples?!

Postby missgamecock » Sun Mar 19, 2006 05:43 pm

Wow no wonder you are scared. I know exactly what you are talking about with what not knowing what the heck is going on. I'll tell you a little about my experience. My first daughter was born in a Belgian hospital. In Belgium, the military drs had warned us Americans that Belgian drs did not like patients asking questions, questioning what they were doing. Basically you show up at the hospital and do whatever they tell you to do. So American military and dependents were followed by two drs. One an American military dr and one a Belgian civilian dr. The military drs would go over tests, etc and make sure that the Belgian drs were doing what they were supposed to do. At 24 weeks the military dr diagnosed me with PE. She begged me to do bedrest but I didn't see why. I though big deal so I have a little hbp and protein in the urine. At 34 weeks, the military dr in the acute care area misdiagnosed me with indigestion. He wasn't ob like the ones that I had been seeing that were military. Ifelt sick but thought it's the stomach flu. Meantime the military drs were having a fit saying I needed to be hospitalized. They sent me for NST constantly. It wasn't easy because the hospital was an hour away from the base. My belgian ob said nothing was wrong with me. Finally at 35 weeks 5 days she admitted me for PE. Finally she diagnosed me with it. BUT she didn't tell me why. Just that my bp was high and I was going in for observation and I would be out on Monday. This was Wednesday. She also said she would be there. THAT IS NOT WHAT HAPPENED. I get to the hospital to find out she went on vacation. The next day the base calls and says I don't know why your dr told you you are there for observation. You are there till you have your baby. You have pe. Your liver enzymes are really high, high protein, high bp and it is a bad situation. I still felt fine. I was going to have my baby the following week. My dr was no where to be found. She left and went on vacation and didn't tell me. I didn't like her but she was all that I had. She left me in the care of oncalls drs. My care was passed from one dr to another. Whoever was on shift. The next day at 11 am the base called again. Tests were worse, I was being induced on Monday. We didn't even have a nursery ready. At 2pm a dr came into my room and said that they were terminating my pregnancy tomorrow morning. Just like that. Didn't explain anything and quite frankly I was in a state of shock. I was moved to L&D within the hour. I crashed at 12am the next morning. No one explained to me what was going on, no one told me what to expect. I was put on mag sulfate for three days. I didn't hear from the base over the weekend. After three rounds of them getting the cervix ready, labor was finally started. I had Kirsten by emergency induction at 11pm. I really should have had a csection according to military drs. But the belgian doc when I asked if it was such an emergency why not a csection said my platelets were too low and they were afraid I would hemmorage or/and have a seizure. That was the only explanation I got. No one told me what was going on and even years later I am still angry about it. I just got my records a few months ago after requesting them several times. My belgian ob had me diagnosed with PE at 30 weeks! But told me the whole time the military drs didn't know what they were talking about! But it is documented in b&w in my file.

So when it came time to have Sara I was terrified. I started off with the midwives in my practice but they quickly decided I was too high risk and referred me to my dr. I love that guy. He took good care of me. If I asked questions, he answered him. He had a special knack to know when I didn't understand something and would explain it. He always allowed time for me to ask questions. He respected my decisions too. I was terrified of being transferred to another hospital and at my hospital, you have to be 35 weeks or else you are transferred. They don't have the facilities to care for sick moms and babies before 35 weeks. I got to 35 weeks.

What I did was ask questions when I was confused about something. My ob constantly constantly told me to call if I had any questions, issues, or concerns. When I did page him, he was very quick to return the call. He had his nurses call and check in on me if I didn't call them. Let your dr know what happened and that you are scared. Good drs will take the time that they need with you. If you don't understand a result, ask them to explain it to you. They are drs and sometimes they forget that we all don't speak their language. For Ex. my doc told me the most Aldomet that you could take was 3 grams, I was like huh. Oh 3000mg clarified. I am a control freak too and my doc knows it. So I had to learn to let him do the worrying for me. Also I had issues with nurses and mw freaking anytime they saw me. I just told him about it and he ran interference wherever he could. They were still very nervous around me, but he made sure that they tried not to show it. I didn't completely trust my ob till after Sara was born. I had a lot of after delivery complications and the way he handled it, is what made me trust him. I later found out that everything he was doing with my care was by the book and then some. Also after Sara was born was when he told me how worried he was, he never ever freaked out in front of me. He would explain stuff as he did it, like he came in and said he was taking me off of all bp meds to see what my bp did. If it went up, it was chronic, if it stayed the same or went down then it was PIH. Mine didn't go up so he said it was pih and then put me back on meds to lower it. He explained a lot of things at my pp appts too. I hope this helps. Just don't be afraid to ask about things.

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Re : "positive communication" w caregivers - examples?!

Postby princess_ame » Sun Mar 19, 2006 05:06 pm

I just want to welcome you here. I have been through lots of scary things too and have often felt like I can't get them to pay attention. I am sure some people here will chime in with great ideas. My method has been to call them alot!!! and ask lots of questions. My doctor was with me for over an hour for this last visit, carefully listening to my questions and thoroughly answering my questions. I will admit, I feel like it's taken alot to finally gain their attention, but continuing to work hard at letting them know your thoughts and feelings (as hard as it may seem) and for me even doing my own research in books and on the internet just to get ideas for questions has helped.
I truly hope that this pregnancy goes smoothly for you and know that there are many here who will be ready to encourage you and help you along. Don't hesitate to ask questions and make sure you arm yourself with knowledge...that will help too.

blythe
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"positive communication" w caregivers - examples?!

Postby blythe » Sun Mar 19, 2006 04:29 pm

Hi everybody. I am finally, convincingly pregnant with #2 - I think I even feel her (?) move, and I'm 16 weeks today.

My first pregnancy was very frightening for me, not because of PE, but because I wasn't able to get straight answers out of my doctor or the nurses. I couldn't understand why I was being induced against my wishes when I didn't have PE yet. (BP of 178/98 and 200 protein 24-hour on Monday. Doc said "you don't have it yet but you'll probably develop it soon, you're 37 weeks on Friday and I'm on call, so we'll just do it then." I understood that PE was dangerous - I'd seen the ER episode [:)] - but didn't understand that high bp was also dangerous - because doc didn't tell me! And the nurses just got annoyed when I asked questions, telling me "your doctor knows what's best" "you just need to do what your doctor tells you". I was finally in tears before the induction, convinced my doctor didn't know what she was doing and was taking a risk with my baby's health (IUGR on ultrasound, which I thought meant he should stay in LONGER, because she wouldn't answer my questions, just told me not to worry about it!). A nurse finally figured out why I was so frightened and explained that IUGR, high BP, protein -even though it wasn't showing on a dipstick she was pretty sure it would be over 300 by now if doc had remembered to do another 24hour - were all dangerous and even dangerous if there wasn't more protein. I was much relieved, BP went down to 120/80, and I had Storm at 8:30am.)

So, control-freak me can't just trust my doctor (especially this one, who had done a lot of other little things throughout my pregnancy to make me think she didn't know what she was doing. Never mind that she did exactly the right thing medically when it came to PE [:)], her bedside manner left a lot to be desired.

When I debriefed my delivery with her later, I actually told her how scared I had been. I asked her how I could prevent that type of communication misunderstanding from happening with her again. She said to ask "what's my diagnosis" and that any doc would know to back up and explain better.

I have a new OB I love, but not so sure about her partners. At one of my miscarriages, she was on maternity leave. Her partner was very empathic and warm, but pushed for a D&C, which I didn't want. He kept saying "I just think it will be difficult". "Physically?" "Emotionally?" I asked. "What do you mean "difficult"? And he wasn't able to articulate it in a way I could understand. ("what's my diagnosis" didn't seem appropriate here [:)].) I was adamant on the no D&C, but was left doubting my decision. Then he left, the midwife closed the door and almost rolled her eyes and said "he's thinks it'll hurt too much, but if you don't want a D&C, you'll probably be fine. If it's too painful, you come into the ER and we pump you with painkillers until 7am when someone comes in and does the surgery." AHHHH. No more confusion. Can I just hire her as a medical translator? [:)]


Anyway, long-winded background for why I need help! I'm a control freak, I freely admit it. My new doctor is awesome, answers all my questions in ways I understand. But what if someone else is on call when I get sick or go into labor? What about the nurses who will be doing 99% of my care?



So finally, my question:
What kinds of things have you said to your doctors or nurses that have gotten their attention, got your questions answered, got you more interventions or less (cervidil instead of pitocin for me, please! but that's another part of my story), basically what have you said that has gotten what you wanted? Reminded them that you are a person, not a diagnosis?

Thanks in advance for all your help!




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