Challenging the Dr and trust in general....

[anathor21]

Seems that many of the postings and stories I have read over the last few days seem to have a common theme of people feeling that they have to fight or push for different/better care. I was raised in a family that trusted the medical profession (and I suppose "authority in general"). Thus I'm somewhat predispositioned to challenge our doctors without a solid reason. For me this goes beyond just giving them be benefit of the doubt - it basically is "trust them and go with what they say"

On the other extreme there is the "challenge everything, you are the patient and they work for you" side. Although I have some medical exposure, I have not received any of the training that doctors have and thus don't have the framework of study in which to make these decisions.

Somewhere between "just do whatever they say" and "challenge everything" is likely the optimal solution. Question is, how does one draw the line? (this quesiton obviously goes beyond PE, but at the moment I'm more interested in focusing the discussion framed in the PIH/PE context).

Thoughts anyone?

[angelkat]

Ohhh... This is a hard one. As a Nurse it's VERY hard to have a patient question your every answer and sometimes to much knowledge is not a good thing. Sure you have some that go over board with their demands but as a patient you need to have trust in your Doctor.

Before I became preg with Casey we sat down with the MFM team and discuss in details what we expected from them and they also did the same. Trust in your Doctor is very very important. Yes, I did everything completely what my Doctor said to do. I trust the team I had completely and would move back to St. Louis if I ever thought about getting preg again.

In my expirences, I tend not like to be told what to do... And if a patient starts demanding things and trying to self diagnose it really makes for a sour grape.

[gordon k]

Fortuntately for my wife and I, the "line was already drawn," so to speak, when we began treating her infertility. We got a referral to an excellent urologist from Norlisa's then OB/GYN, who referred us to excellent reproductive endocrinologists/infertility doctors, who would not try getting my wife pregnant without her seeing the excellent perinatologist they referred her to to treat her hypertension. (I keep using the word, but there is no other way to describe all of them, they are great doctors and people.)

One could always find out about doctors that they can trust through referrals from friends and from doing research. Also, the websites such as nasshp and smfm help to find the type of doctor you're looking for. The quality that distinguished these doctors is that they each took the time to explain throughly what was going on, what is happening in your wife's/twins' bodies, make drawings, show graphs, answer each and every question patiently and to the best of their ability. While you are there, you are the only patient in the room, and there is a doctor/patient relationship where you both want the same thing: the best for your wife and children. None of them ever made us feel like we were asking stupid questions, and they were sensitive and respectful of the fact that we were trusting our lives to them. These doctors are such experts in their field and confident, but not cocky, and would make sure that you left there with peace of mind.

I believe that if a doctor is knowledgeable in his or her area of expertise, they will answer all of your questions. They work with you to achieve the best outcome and illustrate the true meaning of a good doctor/patient relationship and partnership. You learn from them, the questions come naturally while you're with them and you're not afraid to ask, you don't feel intimidated but comfortable in the choice you've made in your physicians.

[anathor21]

We trust our Dr - she is the only OB we have had. What has me wondering, however, is that there seem to be some things that she could be recommending that we have not heard from her - the simplest is home monitoring of BP - I tend to do this anyway, but now (after reading more here) I'm taking this to a twice daily routine documented on our calendar instead of the haphazard timing and random slips of paper that get lost...

It seems to me that this should be a basic suggestion given our history and current readings.

Does this indicate that I'm just not asking the right questions? Perhaps she isn't as concerned about the risk of recurrance for some reason? We're on a every two week visit cycle - our next visit will be week 29, ironically one week before we had first indication of problems with Isabel.

Our next visit is going to be full of questions I'm afraid and she's likely to wonder (and perhaps ask) why... I feel I'll need to be careful to not imply a loss of confidence/trust.

[kjones]

I feel strongly that anyone who is a patient that feels he, or she is not getting adequate health care should seek out other options. You as a patient know your own body, and it is best to listen, and tune into everything. I speak this from direct experience, not just from preeclampsia in general, but on behalf of a mother I lost, she had suffered from cancer for 2, and a 1/2 years, while her life was played with, thinking it was severe allergies, by the time a very educated, experienced doctor from out of state seen her, and corrected her diagnosis it was too late, the cancer had branched off into other parts of the body. Trust is a very important role, and anyone as a patient needs to feel comfortable, and safe with any of their caregivers. Building trust is essential, and establishing trust with the right caregivers can give you the peace you need to deal with any problems, and concerns that you may face. Always keep in mind alot of "over-reacting" leads to alot of saved lives!! Any of us as a patient deserves thorough care, and to be able to trust our physicians, and staff regardless of the situation..

[kjones]

Keep a daily diary of everything going on, from day to day. Right down everything that crosses your mind, or any concerns you have. Ask, ask, ask!! They are there to answer your questions.

[rachel a]

I can completely understand where you are coming from. We as a population generally trust our doctors and tend not to question their expertise. However, you, as an educated patient, should question the expert if you don't feel adequately provided for. The PF is a huge support group and by sharing our experiences, we educate others who are going through/have gone through similar experiences. We learn valuable "tips" from one another and through our combined experiences, offer greater assitance/support than an individual can. Most of us speak from hindsight and looking back we question, if I'd done this or that, monitored this or that...maybe things would have turned out better.

Please, don't hesitate to question your doctor, you're not questioning in a manner that negates their education or expertise. You're questioning because you want to take absolute best care of your wife and baby. Your doctor, likely, will understand this.

Trust is difficult to establish with many medical professionals, likely because they are so busy and no longer have time to sit, talk and create bonds with their patients. So make time to sit and talk. Discuss your concerns, thoroughly. Make a list of concerns and check each one off as your doctor answers.

I hope I've said something that helps! I wish you the best of luck.

[catherine]

Just wanted to chip in on one thing.

You're a professional engineer right? You don't take exception when you are asked questions that are directly targeted towards issues on your project, even if they are asked by someone who you think wouldn't/shouldn't be so up-to-speed on the relevant points do you? I suspect that what you might do in that position is re-tool your responses to acknowlege that your client or whomever has asked you to take your presentation and logic up a notch in laying out your reasoning for a particular approach. Good doctors show the same response. They'll acknowlege that you've done intelligent reading, they'll take the time to extrapolate from the general conditions (which is all we can talk about) and put it into the precise context of your wife and her current pregnancy. Finally, the best doctors will admit when they don't know the answer for sure, but will take a question under advisement and get back to you. I think it is unreasonable to expect any doctor to have read the most current articles that can be found on Pubmed, but that it is not unreasonable to ask them to look at them and give their considered opinion.

One thing that I'd like to emphasize is that medicine is both an art and a science. I'm a scientist myself and am emphatically in favor of the application of evidence-based approaches. However, I'm sure as heck not going to think for a moment that a good OB with years of experience can't see a pregnant patient and not have "a sense" about how things might be going. Your OB may be picking up cues from your wife's condition that might be reassuring for now. I've been in the same situation, full of intangible worries, and my MFM recognized my perspective and answered it by sharing all lab results with me.. because he knew that I'd be more reassured by that, than by bland reassurances about my well-being. Your OB should be more than capable of re-calibrating her interactions with you and your wife without you feeling that you are jeopardizing the theraputic relationship.

[fiona]

I found that in my last pregnancy, I had read so much and researched so much, that I was constantly taking the docs' comments and quizzing them if that meant this or that. My OB laughed one day and said he thought I knew more about pe than he did - even my peri team stepped their responses up a gear.

When it came down to whether I needed to be delivered, my OB just said, 'Ok, you've been there twice before. You know how it felt. What do you want to do?'

Personally, I think any dr worth their salt will be happy to go into the details whichever way makes you and your wife feel more on top of what's happening.

[youtan]

Its an interesting topic you've shared. My perception of the medical profession really changed while going through not only severe HELLP but 2.5 months of intimately watching them with my fragile child. I suppose I was much like you before - knowing the miracles that the modern medicine has brought us and having upmost respect. I was in graduate school during this time and really thought my studies paralleled that of an MD in several ways. Was I ever wrong. I don't think my respect for the medical field has weakened - but looking back its my understanding changed dramatically.

My scientific background is based on mathematics and very logical training. Catherine described medicine to be both an art and science. When docs make decisions its is based on experience as well as on the 'numbers'. I had/have a hard time trusting and understanding the experience. This is what really frustrated me at the time.

The docs didn't catch my HELLP at first. My initial feeling was of anger that they could be so stupid - that it took hours for them to even decide to check my labs - that if they would have waited even another hour - who knows what would have happened. But - now looking back - I see that they did in fact catch it - just in time. I was lucky they took only hours and not days to decide on my labs. Maybe I should have been more grateful. Or maybe I should have been more informed. Actually, I think both is true.

When I post and share stories here - it is just that which I'd like to get across to people. Be informed, ask questions, but be grateful to the medical profession as they do actually try. Make sure the doc of choice has been trained and has experience in the given field. When one needs to trust the experience - it must be relevent experience. For our needs - that usually means having an MFM or perinatologist to at least oversee the care.

One more comment I'd make - is that it seems to me (I didn't attend med school remember) that US MDs are focused on responsing to a condition, not preventing the condition or even necessarily projecting when a condition might occur (the Peri's, tho' should know the statistics). This may be why in some cases many patients have an overall frustration after experiencing rapid onset of preeclampsia. We are expecting more of our docs.