Trust issues

[okarol]

After all the medical procedures, medications and surgeries my husband and Jenna have had, I have become very distrustful of the medical profession. If someone in my family has to be hospitalized, I will not leave them alone. I have seen too many screw ups to be comfortable. And when nurses and dialysis techs pretend nothing happened, it increases my concerns. There are 2 doctors who I trust (as much as I can) and that's taken a long time for me to see that they have my loved ones best interest at heart, not their career or clinic, not their wallet, not their ego, but a genuine interest to find solutions to health issues.

[MooseMom]

Now you see, okarol, that's the sort of "trust issues" I'm talking about!  When I first saw my current neph, he told me that he "didn't have much hope for those kidneys."  That was 6 years ago.  He has kept me off dialysis for all this time.  Now, I've worked really hard toward the same goal, but I am happy to give him credit.  But I imagine that he will make a lot more money off me once I start D, and once you start D, your fate is placed in the hands of more people, and if you don't know these people personally, then you wonder if everything they do is always with your best interests at heart.  I really don't mean to be cynical, but I have had a couple of doctors who have ordered fancy tests for reasons of which I am not quite sure.  I just want to make absolutely sure that I will get the best treatment possible.

[Riki]

I think I might have had a bit of an advantage when I started HD, because a few of the nurses that work in the unit also did the PD home care visits, (blood work, giving aranesp, tubing changes) so I knew them and already had a trust level with them.  When they actually started needling me, I wanted one nurse in particular to do it, because I knew that she knew where my veins were, and would probably have no problems getting in.  The first 2 times they tried my fistula, it was just to see if they could get it, and they did.  Both times they were able to get blood back, but they didn't do the treatment with the fistula, because they didn't think it had developed enough to last a whole treatment.  And I was right about that one nurse.  She knew where to go, and she's still the best one to hit the vein when others are having trouble.

I know that in the States, it's mostly techs, and not nurses that do everything, but the principal is the same.  Once you've built a bit of a rapport with them, it's much easier to trust them with sticking you with them big ass needles.. *L*

[Stoday]

I think that with younger patients, they talk to talk at us or down to us instead of with us.. 

Older patients too, Riki.

As I get nearer to 70 there seems to be an assumption that I've lost my marbles. So when my DIL gave me a lift to hospital, the doctor talked to her. I found the situation funny; my half-supressed sniggers probably didn't help.

[MooseMom]

Let's face it...there are docs out there who are going to talk down to any patient.

[lorna]

I can always tell if i am going to have a good run or not when i get to the parking lot by looking at the nurses cars parked outside. I trust most of them but there are a few who just talk at me and never with or to me and it makes me so frustrated. I had that happen today infact and left the center feeling so upset and deflated because it felt like she wouldnt let me get a word in or tell her how i was feeling. I was having an off day to begin with, then when i saw her car just knew it would be a long run. When i got inside and ready to hook up she started to go on and on about things in my chart and i have only had her once before so she really dosnt know me or my usual pre dialysis numbers. i just snapped and burst into tears and she just kept on talking over me being upset. If she would have just stopped right there i would have calmed down and not be feeling like i am now... deflated. Moral of the story being its always nice when you can trust the person giving you care but the majority of time i find i dont. My doctor however i do trust and thats really important.

[MooseMom]

I have found this thread to be so useful, so I thank all of you.  How do you get the best service/treatment out of the people who care for you?  Techs/nurses are people, too, and I it is worth reminding ourselves of the fact that they have bad days, too.  If you treat people with care and respect, then you have a better chance of them reciprocating.  I have found, in my more limited experience, that if you show an interest in them on a more personal level, they loosen up and see you as a real person.  When you are ill and frightened, it is not always easy to smile and be a good patient.  And lorna brings up a good point...not all nurses are good; if you know you're getting a difficult one, then you have to change your tactics. 

When my mom was on D, she always had a smile on her face and never had a negative word for anyone.  She was beloved at her clinic.  I really don't know if I can be like my mom; she was not very pro-active (which was probably one reason why she was so popular!), but I think I can learn a lesson or two from her.  Well, I can try.

[cariad]

I seemed to always attract anger - loads of it. Anger or complete disregard for my existence. I would have loved to be condescended to, especially when I was really little, but my inability to be utterly gorgeous while living with an organ transplant was just too offensive for most doctors.

My mother once took me to the doctor, cannot remember if it was urgent or not but it was someplace where I was completely unfamiliar with any of the medical staff. The doctor stood inside the doorway and ordered "take off your clothes, I'll be right back" and left. No introduction, nothing even said to my mother. And there was no gown offered. I was at my limit - there was just no way, they were going to have to shoot me to get me out of one layer of clothing. Then he came back in however long later, stuck his head in the door, said "Whoops, you're not ready yet" and closed it. The whole time my mother is sitting there doing that whispering shout that mothers do that I had better take my clothes off. She was easy to ignore, all I could think was "My father is going to murder me for this." Finally that guy returned, did the exam anyway without mentioning a thing, and we left.

If that girl were here today, I would give her a medal. Does it really not go without saying that there is something deeply wrong with a strange adult man demanding that a 9-year-old girl disrobe, doctor or not. I would pity the doctor that dares treat one of MY children that way. One of my sons had to have a rather invasive exam from a nurse practitioner recently. The moment she touched him in a place where he did not want to be touched, he grabbed her hand and said "Get out!" in a Clint Eastwood-esque voice that I am quite sure I've never heard from him before. I think the NP expected me to scold him or similar. I just laughed. Then the entire way home I kept telling him "Well done there! I am sooooo proud of you!" and I told Gwyn about it, and my mother. (hint, hint, lady!)

I can tell from brief experience that people in wheel chairs put up with a lot of condescension crap. I could barely walk after my transplant and was wheeled down to the taxi rank after discharge. The driver asked my husband if I could go in the back of the car. Like Stoday, I also found it amusing, but then, I knew I would be out of that chair in the near future. I don't think I would make a terribly polite wheelchair user if it were a permanent situation. I like to think I learned from that. When I go to labs, I often have to wait in a queue to check-in. Sometimes, people are there in wheelchairs and it is unclear if they are on line or not. I always ask the wheelchair user and not their companion, but I'm pretty sure I did that before transplant as well. It's more now that I notice when other people don't.

[MooseMom]

Having a handicapped child makes me more aware of how I communicate with people.  It's not easy to find just the right tone.  You don't want to talk above/over anyone, but you also don't want to make assumptions about how well they are understanding you, either.  As my mom grew older, I had to constantly remind myself that she didn't need to be treated like a baby.  Actually, that particular point was driven home to me when she showed me her lab results from D, and they had the little frowny/smiley faces on the report.  I thought that was really condescending as my mom was NOT a kindergartener.  So in my dealings with my mom, I always came out and told her that I was going to trust her judgment and was not going to infantilize her.

Making assumptions is the problem.  If you are young or old or handicapped in any way, people make assumptions which are often incorrect.  I try to go into situations believing that all in all, people are trying to help and are not out to sabotage me.  If they do something that offends me, I try not to assume that it is on purpose.  I'd like to think that medical staff are better educated these days in how to deal with their patients more effectively and compassionately.  In my particular case, I've not had any bad experiences in the past that have poisoned the well (unlike you, cariad and riki), and since I am older, I have more confidence in my instincts and intelligence.  I think doctors pick up on that, and I suspect it innoculates me against general condescension.