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natnnnat
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« on: July 06, 2010, 09:35:31 PM »

Inspired by some interesting comments from Hemadoc at another thread
http://ihatedialysis.com/forum/index.php?topic=19397.20

I remembered this quote from a paper I recently found, it’s about what informed consent is meant to constitute. 
Failure to obtain a patient’s informed consent is a form of medical malpractice. The first element in an informed consent action is the duty of disclosure. There is general agreement that the following information should be given: (1) the nature and purpose of the proposed intervention, (2) the intervention’s probable risks and benefits, and (3) alternative interventions and their risks and benefits. But the exact scope and extent of this disclosure varies among jurisdictions.
Pope, T. M. (2010). Legal briefing: informed consent. Journal of Clinical Ethics, 21(1), 72-82.

I found this paper by chance recently, and immediately thought of a laparoscopy I had in May.  The discussion with the surgeon went like this: 
Surgeon:  I’d like to do a descriptive laparoscopy, do you know what that is?
Me:  (vaguely) yes…. Okay! Let’s do that then.
At which point he got me to sign something.   Doesn’t quite match points (1), (2) and (3) shown above.   So I figure its worth putting these forward to a community where people often provide that signature indicating consent… to know what the conversation was meant to be like beforehand!
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Natalya – Sydney, Australia
wife of Gregory, who is the kidney patient: 
1986: kidney failure at 19 years old, cause unknown
PD for a year, in-centre haemo for 4 years
Transplant 1 lasted 21 years (Lucy: 1991 - 2012), failed due to Transplant glomerulopathy
5 weeks Haemo 2012
Transplant 2 (Maggie) installed Feb 13, 2013, returned to work June 17, 2013 average crea was 130, now is 140.
Infections in June / July, hospital 1-4 Aug for infections.

Over the years:  skin cancer; thyroidectomy, pneumonia; CMV; BK; 14 surgeries
Generally glossy and happy.

2009 - 2013 PhD research student : How people make sense of renal failure in online discussion boards
Submitted February 2013 :: Graduated Sep 2013.   http://godbold.name/experiencingdialysis/
Heartfelt thanks to IHD, KK and ADB for your generosity and support.
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« Reply #1 on: July 07, 2010, 01:58:07 AM »

That is definitely something worth knowing.  Thanks for sharing it with us. :cuddle;
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cariad
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« Reply #2 on: July 07, 2010, 08:50:49 AM »

I found this paper by chance recently, and immediately thought of a laparoscopy I had in May.  The discussion with the surgeon went like this: 
Surgeon:  I’d like to do a descriptive laparoscopy, do you know what that is?
Me:  (vaguely) yes…. Okay! Let’s do that then.
At which point he got me to sign something.   
Now Ms Natalya, call me a horrible old cow if you must (though I prefer Gwyn's "silly moo") but you are too smart to answer yes when you mean "not really". He took you at your word, even though I'm sure you were indicating non-verbally that you did not really follow. I am torn on this. I understand as well as anyone how intimidating certain doctor/patient encounters can be, but I also abhor being forced to sit through lectures on points I really do understand. (The transplant eval orientation fits this description perfectly. Do I really need to hear lengthy answers to "How long does a transplant last?" or "Can I still have children?")

I had amnio twice. I see this as a feminist issue (duh, right?) because I have had my share of medical procedures, but in no other situation have I been forced to sit through some insulting remedial course in basic biology. Do they ever treat men this way? I think with something like transplant, it is so complicated the onus has to fall to some extent upon the patient. I think the doctor is responsible for outlining the major risks, and then the patient must decide which ones require further explanation. (If you want some fantastic reading on women and how they understand amniocentesis, you must pick up Rayna Rapp's "Testing the Fetus". I read it before my first amnio, and to this day it stands in my mind as a stunning work of anthropology.)

Having just been through the major portion of a clinical trial with extensive informed consent, in the US they make you come down to the centre where a nurse essentially reads every page to you and you are encouraged to ask questions. We could have been there all day, but I did a fair amount of my own research and I had experience to draw upon. It was a bit over the top, and there is only so much information one can properly take in at a stretch. And after all of that, I still felt like the experience was nothing like what I expected. The one issue that I am a mite bitter about still is the doctor's failure to suggest a PICC line or port for blood draws and IVs. I had ten days of constant needle sticks and it has really destroyed my veins, and by the time a tech explained that there were alternative options, it was far too late. Now I have to continue to get frequent blood draws, and the stress of having wrecked veins is wearing upon me. Is that an informed consent issue? Meh, I guess I don't see it that way. Just more proof that even my amazing surgeon is human.

What I would like to see is a clear outlining of patients rights before any and all medical encounters, which in this country would include the right to refuse any procedure or any part of any procedure and still receive care. This could be offered at reception, but I would also like the option to refuse the sheet if I already have a collection at home (save the trees!).

From the other thread, I have to say that pediatric transplant candidates are usually in far more desperate circumstances than adults. Ask me how I know! We can sit here as adults and say there are reasonable alternatives to transplant, but for kids, it is an entirely different world.

Informed consent is most certainly a vital topic that every renal patient should understand thoroughly. Great topic as usual, nat! :grouphug;
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natnnnat
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« Reply #3 on: July 08, 2010, 04:08:49 AM »

I’ve been thinking about this alll day, and keep finding there’s still more to think about.  I’ll just put the gist here, but what to leave out?  Tears hair out!  :stressed;

I blush Cariad, I do.   Why did I say yes and sign?  I knew vaguely what a laparoscopy was, the surgeon said it was the next way to find out why I was getting repeated UTIs.  I had heard that laparoscopies were pretty quick and easy.  This was my first ever interaction with a hospital / surgeon as a patient.  There was a level at which I had decided to allow him to do what he thought was best to help me, there was a level of trust that I had decided to place in the whole process.  And I wanted the results of the (exploratory) laparoscopy.  But there is a difference between knowing what an exploratory laparoscopy is and knowing what the experience of having a laparoscopy - or being in hospital for that matter - is like.  Having never had a procedure, I didn’t know how devilish the detail can be.  I have thought carefully about whether he-TOLD-me-about-laparoscopy-and-I-don't-remember, which is possible, but I don't think that happened.   I remember thinking as I signed, he hasn't told me what a laparoscopy will entail yet... thinking that more information was coming and wanting to get through the appointment quickly so that I could get out of there and back to my desk at uni.  … But this points to another issue in the exchange, which is that I wasn't focussed on the exchange, and that's not the surgeon's fault.   Note that in my case, they went in to “look around”, but they found moderate endometriosis, and removed it.  So the procedure ceased to be exploratory at a certain point, moving beyond what I had agreed to.  I fronted into hospital in close fitting trousers expecting to go back to work 2 days later, panicked when my lungs started cramping (from gas), went home the next day unable to do my pants up over a swollen belly with four holes in it, and didn't return to work for 2.5 weeks.  I was upset at the time, but I healed, and that's probably why I'm happy enough now.  This is not a rant.  Some people would thank them for clearing out the endo.  I am not so sure, but it’s not a matter I’d want to take anywhere.  But it does make the questions of "informed" and "consent" even more interesting.   

I heard a medico comment on the radio the other day that people want different amounts of information.  Some don't want to know the details, others want to know all the information there is.    And as you point out, at times (times probably more dependant on the state of mind of the patient) a person can deal with / remember / understand lots of information whereas at other times, not much goes in.  From the practitioner’s perspective, it’s not just a matter of being able to "give information" to people, some set quantity of information, and that solves the problem.

So I was thinking with that first post, it might be helpful for the patient-person to know what is supposed to be covered in that consent conversation (especially if you are new to it… as my surgeon said just before surgery, I was “a virgin belly” -  yuu-uck!!!) .  If the patient knows what questions to aim for, between the patient and the surgeon the important points might be covered even allowing for fallibility.  Having made the distinction between knowing what a procedure is and knowing what it is like to go through from a patient’s perspective, I think some brief explanation of both would fall under an explanation of the nature and purpose of the proposed intervention.   And then I might have known to wear a loose fitting dress in to hospital.

The paradox being of course, that if you need information, you may not know that you need it, or not know what to ask about or how to ask...  I think the only way I could have asked a question beforehand to find out about the gas they put in your abdomen (which I didn’t know about, and the pain and cramping scared me afterwards) might have been, 'what should I know about, what tends to happen, that I wont be expecting...?"  After my experience, I put this question to Gregory’s knee surgeon and we got lots more useful information out of him that way.  The thing is that as a first-timer, I actually expected that if there was something I needed to know, I would be told about it... And normally I think one is, except that this surgeon, on this day, faced with this girl who said she knew what a laparoscopy was (I did, very vaguely)... he might have thought I was well versed in medical experiences, and I assumed that he would tell me what I needed to know, at some point...  Quite honestly I am laughing at myself as I type this, it sounds so ridiculous... what on earth was I thinking? 

Cariad, I like the way you got more information than you ever wanted at the clinical trials, while (I realised in retrospect) I got way less than I wanted, and we both comment the experience wasn't what we were expecting. 

The article that I quoted in my first post discusses informed consent from the perspective of practitioners avoiding malpractice claims.    I am talking about patients using the informed consent guidelines to obtain information they might need - not covering a***s but developing… informed consent!  There is another perspective as well, the idea of informing one’s surgeon, for example, next time I might have wanted to inform my surgeon in advance, that I didn’t give permission to proceed with removal of endometriosis.  In either approach the aim is a patient who understands the pros and cons of choices ahead of them, and a surgeon who understands the patient in front of them.  But once you move beyond the most basic of medical situations, the possibilities that the future could hold are endless.  And the ways that a person’s body might react to a situation are predictable only within a range.  Even the way that a body might react one day is different to the way they may react another.  So I ponder that even if a patient and practitioner want to fully inform each other, a complete “consent” conversation would be endless and pointless as no one could remember it all. 

Obviously, conversations about informed consent between surgeons and people considering surgery have to be attempted.  I am pondering some of the logistics, and the ways that that ideal of the “informed patient” is really hard to achieve.



« Last Edit: July 08, 2010, 04:13:19 AM by natnnnat » Logged

Natalya – Sydney, Australia
wife of Gregory, who is the kidney patient: 
1986: kidney failure at 19 years old, cause unknown
PD for a year, in-centre haemo for 4 years
Transplant 1 lasted 21 years (Lucy: 1991 - 2012), failed due to Transplant glomerulopathy
5 weeks Haemo 2012
Transplant 2 (Maggie) installed Feb 13, 2013, returned to work June 17, 2013 average crea was 130, now is 140.
Infections in June / July, hospital 1-4 Aug for infections.

Over the years:  skin cancer; thyroidectomy, pneumonia; CMV; BK; 14 surgeries
Generally glossy and happy.

2009 - 2013 PhD research student : How people make sense of renal failure in online discussion boards
Submitted February 2013 :: Graduated Sep 2013.   http://godbold.name/experiencingdialysis/
Heartfelt thanks to IHD, KK and ADB for your generosity and support.
cariad
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What's past is prologue

« Reply #4 on: July 08, 2010, 07:59:31 PM »

I’ve been thinking about this alll day, and keep finding there’s still more to think about.  I’ll just put the gist here, but what to leave out?  Tears hair out!  :stressed;

I blush Cariad, I do.   Why did I say yes and sign? 

I've been thinking about it endlessly as well! And please don't blush. You said yes and signed because that is what we all do. I have done this not only for myself, but for my children, which is chilling now that I think about it.

I definitely think your surgeon was remiss to not say "well, since you know what it is, I'll just skip straight to the risks" because those should really be gone over no matter what, even if you are about to operate upon another physician. Also, he absolutely should have said "do you have any questions about the procedure" because knowing what something is and knowing the specifics are usually worlds apart.

I liked the way that my transplant centre handled this, which was not to ask "do you know what X is", but to say straight off the bat "So, why are you here?" which forced me to explain why the procedure is needed, not just that I understand what, say, an EKG is. When I had my radiation consult, the doctor told me (after I explained the purpose of the visit) that most people just say "because they told me to" in answer to the why question. That gave me some insight into how lost and overwhelmed their standard patient may be. In the amnio book, she looked at 3 different hospitals, which happened to break down roughly into three income classes. The poorest served mostly immigrants who only spoke French (Haitians) or Spanish. These patients had no idea what a chromosome was and held some fascinating beliefs about what the findings would mean. One couple wanted to abort because of a sex chromosome abnormality (I believe it was a male child) because they thought the geneticist was telling them that the baby would be gay. So, I think this beautifully illustrates the range of knowledge that doctors and other medical professionals must be able to work with. Oh, and the range of cultural beliefs is also a factor.

I so agree that some people don't want to know. I vacillate. I wanted to know about the trial because it is fascinating to me, but I can remember telling a nurse right before I was going to have a biopsy (that was called off due to great risk) that I did not want to know. I was feeling nauseated as she was talking about. She said "You don't want to know this, do you?" and I told her that no, I really didn't, and then she just kept ploughing ahead with her explanation. It annoyed me at the time, but now I'm thinking she did the right thing from an informed consent standpoint.

Quote
Cariad, I like the way you got more information than you ever wanted at the clinical trials, while (I realised in retrospect) I got way less than I wanted, and we both comment the experience wasn't what we were expecting.
  :rofl; I did not even notice this until you pointed it out. What a great observation. Wow.

I think it really is difficult to get to an ideal of informed consent, but we should, all of us, always be trying to get closer. Doctors I think need to do a better job of putting patients at ease and encouraging questions. I used to have this  GP who would take questions as insults, and i put up with it! Talk about blushing. (It is really hard to get in to see doctors in California, and I had no doubt he knew what he was doing, but that irks me to this day.) I think if doctors were to consistently say "please let me know if you do not understand anything that I am saying" then maybe more patients would ask questions and give a damn about their care. I completely agree that some people will not even know where to begin or what they do not know in order to formulate a proper question. So I think your question about "what should I know" is a great one, but one that all doctors should address before even being asked. I think most of us can appreciate the need for reasonable formalities such as checking that we understand the risks. What pissed me off about the amnio consult with the geneticist was that it had nothing to do with risks to me or the baby, just an explanation of what they were testing for which I already knew from my 2 years of uni level genetics.

Your point about the fact that once your operation was underway it became a different and more complicated procedure is right on the mark. I am aghast that he did not warn you that it may become more than the descriptive laproscopy that you said you were somewhat familiar with. That does strike me as utter negligence on his part, and he is lucky that you don't feel litigious about it. (In the US, the odds are stacked against the patient, and since no lasting damage was done, I assume, you'd have no hope here of a ruling in your favour.) I think were it to have been me in your place, I would have thought 'well, I would have consented to that anyway, so I guess no harm done' but part of me would have been livid that I did not get to make the decision myself.

Yes, once you get into it, this informed consent business can become quite the rabbit hole. I think I'll try to let my brain rest for now (and give anyone reading this a break, too!)  :)
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