"Whatever you say, doc." "Just tell me what you're going to do, and forget about all the rest." Once in a while, you still hear that sort of thing. There are times when "informed consent" isn't all it's cracked up to be.
Don't get me wrong (not that no one ever would, or could, or has!): I believe in full disclosure, think an informed patient is a good patient, and in fact I always took pride in my ability (and willingness!) to take plenty of time to explain things clearly. And yet... I also think instilling confidence and a positive attitude facilitates smooth recovery. Nurses regularly told me that my patients always seemed calm and confident when they were admitted, and I considered that a very good thing, and high praise indeed. So I hated, at the end of a conference with a patient and family wherein I explained the plan and tried to alleviate fear, to whip out a consent form and ask them to put their name on a shopping list of horrors. It made me feel like Snidely Whiplash. Which is why I generally didn't.
What I liked to do, rather than list all the things that can go wrong, is to enumerate the steps I planned to take to make it go right. It's better, to my way of thinking, to say "putting you on a liquid diet and giving a dose of antibiotic lowers the chance of infection or leakage to less than one percent" than to intone "the suture line could leak and give you a serious infection or kill you." That there is danger is implicit; yet the emphasis is on safety. "To protect your lungs and prevent clots, we'll get you up right after surgery and walk you around, and we'll give you a mild blood-thinner" sounds better and is more positive than "you could get pneumonia or drop dead from a blood clot."
With regularity, I was regaled with the latest consent form generated by lawyers and insurance execs, each more detailed, cold, and frightening than the last; always with the admonition to use that form or suffer unspeakable consequences. Cover your ass above all, they'd say: forget about the patients' peace of mind. I never did. My office notes included what I'd said and how I'd said it. For most operations, I gave handouts or booklets that I'd written myself, and I referred to that in my notes as well. I solicited questions, asked if there were things they were worried about, and I noted that, too. But I wanted my patients to leave my office feeling OK about what they were facing, and I worked hard at it. Foisting a frightening form full in the face after all that is sort of a spell-breaker. So I left the consent signing to the hospital, when they got there. No one ever called me on it, and I never had a reason to regret it. I'm not sure I could get away with it today.
22 comments:
You have no idea how much you are speaking to me right now Dr Schwab. If I didn't know better I would think you know my surgeons.
I did go to the consult with the new surgeon the other night. It was something I was really resistant to and afraid to do. Isn't that ridiculous given the fact that I KNOW it is for my own good?
He was very nice and did put me at ease and I will be comfortable with him doing the surgery.
He did mention in passing that I would be on a liquid diet for a couple of days post op and in the hospital for a week. I brushed it off because I will just be thrilled to come through it and go home. Now I know why the liquid diet.
Also, I am happy (well as much as one can be at the prospect of someone plunging a knife into one's abdomen) that he is going to go through the c-section incision.
I know there are inherent risks to any serious surgery, and since I had 2 classical c-sections, I know some of what to expect with ABD surgery, although,he said this will be approximately a 2 1/2 - 3 hr surgery. I did inquire about some of the risk factors and he mentioned heart attack, clots and that pelvic surgery is more prone to clots and pneumonia.
There was more I could've asked but at this point I just need to do what I have to do and all along I have been asking questions ad nauseam to the point that I really am thinking I was just in avoidance mode.
That brochure idea of yours about the specific surgeries is a great idea! I like it because as a lay person - I never really know if when I am looking up info on the net if that exact article pertains to what I am doing or if there are different med conditions, factors or something that I am misunderstanding, that then would have me thinking about things that don't pertain to me. With your brochure idea, a patient can read exactly what you want them to know and then they have something more concrete to rely on if they choose to do additional research.
BTW - I did finish part III if you want to check it out. :)
Thanks again for another great post.
Friend of Seaspray here, Dr. Schwab. I was just saying to Seaspray earlier today how helpful booklets or "fact sheets" would be-surgeon's would be able to give them to patients so the patient can go home and read up on the basics concerning their pending operations...then if a patient needed further detail, specific questions could be addressed. It sure would cut down on the many questions a person has when facing surgery. Just my .02...
I must say that the world of pre-planned (elective?) surgery sure seems another universe than what I am used to. The idea of actually having the procedure explained beforehand makes me wonder which is best - going into the procedure with full knowledge of what is taking place or being under the knife with no time to discuss the situation? I have to say if I knew ahead of time what my abdominal surgery entailed I may not have given consent. The paperwork says I signed, but I have just a foggy memory of having a form thrust at me immediately before the gurney was wheeled down the hall (with all the commotion and noise that entails). I know that there are situations of implied consent when the patient is completely unconscious / unresponsive but how do you face that gray area of a conscious but not fully "there" patient? Not that I would ever refute the signature but I do find some uneasiness in the fact that I cannot remember signing the form - especially when the form that has my signature did not specifically mention the surgery that I ended up having......
I would imagine that this is a conundrum for the surgeon: that gray area between informed and implied consent?
anonymous: it is indeed a gray area, one that I wrote about in my book, regarding a young man who refused amputation of his leg. Had we complied, he'd have died. But he was very sick with infection, and we did it anyway. He had no recollection of his refusal, and was grateful for the life he went on to lead... My next post here will also be about refusal, in a different context.
Your patients were probably much better informed than those who simply read the horror list forms and signed them. I'd much rather hear that the risk of leaking at the suture line is less than 1% than simply hear that there is a risk of leaking at the suture line.
I don't remember the exact word my surgeon used in explaining my colon surgery 7 years ago, but much more like your method than the horror story method, so maybe you could still get away with it - especially with the handouts.
I wish surgeons all felt as you did. Granted, everyone I come into contact with is having unplanned surgery after coming into the hospital for some reason, there have been no "office visits" to speak with a surgeon and do any education or planning...
I am the nurse who has to get that consent signed, and then sign it myself saying I agree the patient has provided informed consent...
In my very short (so far) career I have already gotten wear a couple of surgeons for a hat as they were displeased with my refusal to get the patient to sign the consent (after all, they wrote the order "obtain signed consent for XYZ operation, what am I, an idiot?") when I would go in to the patient and ask, did the doctor explain the operation to you, and they would say, "no, they just said I needed an operation... what exactky are they going to do?" I can educate a patient about a procedure, and have done a lot of it, but if they have questions, they go up to preop with consent unsigned...
I won't even go into the surgeon who told me, "Give them 10mg of Morphine, 5mg of Versed, then get the consent signed..."
You really should be teaching somewhere Sid. I was so blessed with my surgeon this past time. I signed those forms at the hospital. It's still done in some places. He was excellent about telling me the risks, but he told me the ways in which he would look after me,to avoid those risks! He also assured me he would be available should any complications occur, stressing again he did not expect any. The other surgeon I interviewed, would operate, then pass the post op. check to an N.P. I chose the surgeon who took care of his patients first hand.
very well said!! an informed consent is a very valuable tool also in establishing a doctor-patient rapport.
Speaking here as a "bad outcome" patient, let me offer a few things:
Being presented with the great long list of probable and improbable things that could happen can simply make them all sound improbable, or lead you to conclude that if there are "complications" you will die, since they all warn about risk of death. So then you sign, because you're being told you'll die without the surgery. If, like me, you then wake up with surgery that you didn't expect, on top of the surgery you did expect, as the result of an intra-operative decision, and you are in shock over it, and the doctor says well, you did sign the consent, you can feel a little manipulated. I certainly don't remember anyone going down the list on the consent form with me and distinguishing between those unlikely but still possible things that can happen even in the best of times from the much more likely one where I go in to have a non-functioning organ removed and someone might decide while I'm asleep that I need functioning organs removed, too.
I remember signing my consent only because I did so the day before surgery in the surgeon's office. I ended up being under for much longer than anyone wanted--this is where the unfortunate outcomes got started, basically--and one apparent result is that I remember nothing after the first half-hour or so in the prep room. I know that I was in prep a long time--the surgery started hours late through no fault of my doctor--and I know I was conscious when I was finally wheeled in, given an epidural, etc. But I know this from the records, not from memory, since I lost it all in post-anesthesia results. It shocks me, therefore, that anyone would want a patient to sign on the way in to surgery, since if you're trying to cover your ass in the event of complications, why risk a situation like mine, where the complications basically mean I could claim honestly to have no memory of being informed?
I am still pretty pissed at the surgeon who was called in and decided to do a subtotal colectomy on improperly-prepared bowel and left me with a fouled up colostomy. I wouldn't be as pissed if he had said to me, afterwards, "I had to make a decision that should have been yours, but you were unconscious and I didn't think I could risk waking you up to ask you. So I did what I thought you would have wanted if you had known what I knew at the time. I'm sorry to hear that you think you would have made a different decision, fully informed, but I want you to know that I thought I was acting in your best interest." I could have lived with that. What I got was, "You signed the consent. You knew this could happen." Plus a lot of that "you should be grateful to be alive" business, as if those of us who live through our surgery surrender the right to be unhappy about anything short of death.
anonymous: stories like yours are thankfully rare, but I have been there. I've been the one called in to another's operation to help salvage a situation, and what you described as how you wish it had been said to you is quite how it is: you have to make on-the-spot decisions, playing the odds as they sort out in your head. And I can say with certainty that had they awakened you to get consent, you STILL would have no recollection of it -- unless the situation were such that you could have had a day to have made the decision between operations. That's what the various drugs do.
As to the timing of the consent form: my point was not to be waiting, per se till the last minute: I feel my patients were highly and fully informed. It's just that I hated, after spending lots of time going over things and establishing some sort of trust, to whip out a snidely form at that particular moment. Plus, as I said, my patients typically got hand-outs about their particular situations as well. As you know well by your own experience, what a patient sees on a form, and what's said about it, varies a lot. That's why I think they're useless except as some sort of piece of paper. I believe in informing broadly and deeply, in a way that's both useful and reassuring. And truthful. I happen to think that the whole "consent" issue is, in reality, murky indeed: doctors speak, people hear. Neither side of the equation is perfect, let alone reproducible.
All that said, it sounds like the people who talked to you afterwards were jerks, whether or not they were good operators.
Thanks for the response, Dr. Scwab. I had two good operators--the surgeon I started with and also, I will admit if you make me, the one who was called in--and only one good communicator, the original surgeon's resident. The intraoperative-consult surgeon did stop by the step-down unit at 7:00 a.m. on the day after my surgery to introduce himself and let me know that I had a colostomy. That would have been news to me if the original surgeon's resident hadn't come in at 5:00 a.m. to be there when I woke up, because she didn't want me to "accidentally" discover what had happened. Please don't think I just hate surgeons or doctors. The resident, by the way, not only held my hand and explained things as carefully and gently as she could, she also said everything about five times, in little words, so that someone post-anesthesia with veins full of morphine could follow it. Intra-op surgeon talked to me a couple of hours later as if I had just walked in off the street sipping from a coffee cup and could pass a urine test. My memory of that is corroborated by my sister, who had just walked in off the street carrying a coffee cup and could have passed a urine test. She was pretty appalled at the way the conversation went.
anonymous, again: it's just a coincidence that my current post is about colostomy, by the way: I wrote most of it a couple of days ago. I've indeed had to do many colostomies in emergent situations. I can't think of one where the possiblity wasn't mentioned, but there were a couple when it would have been considered unlikely. The good news is that many -- if not most -- colostomies done emergently for one reason or another can eventually be reversed.
Thanks again. Let me clarify when I said earlier that I was a "bad outcome" patient that I wasn't referring to the colostomy per se. That was certainly a shocking outcome, to me--I went in for a hysterectomy--but it was something the surgeon did on purpose, for a good purpose. The "bad outcome" involved the wound dehiscing, an enterocutaneous fistula, infections, abdominal hernia, etc. et sad cetera. I still have an unhealed pus-oozing incision next to my perfectly functional stoma, which is 10 months old. I can't have it corrected until I'm off chemo and have a better chance of 1) surviving further surgery and 2) healing from it afterwards. So yes, I can testify that you can do most things with a colostomy that you can do with a more old-fashioned approach to bowel movements (if you spent the first 45 years of your life as a stomach-sleeper, you are in for long period of readjustment, but you can eventually adjust). I have other problems. On the other hand, anyone who blithely minimizes the emotional trauma of feeling so mutilated--especially when it came as a surprise--is not thinking.
I LOVE the "Snidely" description! :)
I think the funniest consent form I ever saw was just over a year ago. I was having a hysterectomy and my ob/gyn and I had gone over the surgery, how he would do it, what to expect, and possible complications. I was feeling ok, then he gave me the consent form. It said that a "Possible side effect" of the hysterectomy was sterility. I looked at it twice to make sure I was reading it right and then said "Possible side effect? Isn't that rather the point of the surgery?"
sarahbeth, you may be in for that for the rest of your life. I was in the emergency room, suffering from complications of surgery I had already correctly described as BSO/TAH, when I was asked if I thought I could be pregnant. I remember thinking, OK, someone has some explaining to do and it isn't me.
This complications of surgery stuff is not making me feel real good.
What are the stats for good outcomes s/p surgery?
I realize there are all kinds of variables and so I guess no one can really answer that question. This girl is just wondering....
Maybe it's time that I go back to reading books and playing scrabble for awhile. :)
seaspray: I didn't mean to make you feel bad. It's impossible to give statistics in a vacuum. It depends, as you said, on the type of operation, the general conditon of the patient, and the surgeon. As I said somewhere in one of these recent posts, I've done at least ten thousand operations; significant complications I can count on one hand. Minor ones, a little more. Writing about things make them seem much more common, I guess. I began the "series" because of a request I got to address how surgeons feel about and deal with complications. For nearly all elective (meaning non-emergency) operations, significant problems tend to occur at the one percent range for the big deals, and way less than that for smaller operations. Ballpark. Me. Read books, play scrabble. But come on back, y' hear?
Thank you Dr Schwab. Don't stop writing this stuff - it is helpful in understanding the dynamics of surgery and patient/doctor relationship in all of this. Your writing has given me significant insights in this arena that I wish I had known earlier on.
I do appreciate reading the the stats.
Fear is the opposite of faith. I have always been a person of great faith except for some reason unbeknown to me, I seemed to have locked it in a closet this past year. However, I have recently opened the door and am embracing it again. Not that I've ever stopped believing, but I've been the prodigal daughter. :)
Basically, I am somewhat of a fatalist and do believe that what is meant to happen will happen. Not that we can't effect events by our choices, but that ultimately what is meant to happen will happen in the end, in the grand scheme of things.
You know what I do find weird about going into the OR as a patient? (I have had meniscal repairs, cysto procedures,etc.) I find that I really basically always believe everything is going to be alright and that I will come out better for it. Yet,I know there are always potential risks to any surgery. It is an odd feeling to surrender and give total trust to the Doctor and OR staff and to feel so powerless. Of course, I do believe in the power of prayer and do that too. :)
I should get back to my books and scrabble (I am darn good at that game - says me), but I would have blog withdrawal - seriously! Do they have blogger rehabs?
I will be in the hospital a week post-op. I was actually wondering if it is possible to use a laptop as a patient in the hospital? :)
Dr. Schwab,
We have a good friend, a mechanic, who had to go into the ER for an irregular, too fast heartbeat, and when he refused treatment the doctors had him sign a release that he was leaving on his own terms (because his health need was so dire). But he did allow himself to be admitted to a referring hospital, and when the surgeon there explained the operation to my friend, he said that there was a "short" in his heart and used a few more mechanics' terms. I thought that was such a caring thing of that surgeon to do, to take the time to know his patient and to speak to him in a way that meant something to him.
Your compassion and caring are swo important in a patient's recovery. I had a non-communicative surgeon, a dingy resident, and a botched colostomy with a retracted stoma that defied all attempts to find a satisfactory attachment. I felt trapped in my house because I never knew when the damn thing would leak. The surgeon said the stoma "was good enough" and that he would reverse the colostomy when I was "ready,", a meaningless erm that added to my frustration.
I fired the guy the day I met his junior partner. He knows how to talk, look you in the eye, empathize, and take personal responsibility for aftercare.
I will never forget the horrible, unreliable colostomy bag. But more importantly, I will forever appreciate the young surgeon who healed me with humor, caring, and a good heart.
I love the booklet thing. My preferred hospital does that, and it's very helpful. For one thing, it's difficult to absorb all of the risks in one go. It's nice to be able to sit back and digest the information at leisure. For another, I really liked having the statistics. I knew a trial of labor after caesarian carried certain risks -- but just how risky was it? In the end, I elected to do a TOLAC, but that ended up not being an option; when my water broke, the baby was found to be breech, and so we did a c-section. I say "we" because I felt very much involved in the decision-making process, even though from the doctors' standpoint the choice was obvious.
Post a Comment