Patient Education - Informed Consent

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Hank

Hank

VR.com Founder, Now just a Member
Joined
Jun 5, 2001
Messages
1,263
Location
Mesa, Arizona in the good ole USA
Hello Members,

I hesitated to post this link, as it is an emotional topic.

After much thought - I came to the conclusion that while this may be difficult for some; it conveys the importance of being aware of the decisions before us, and obtaining all information possible.

I find it interesting that after all that Karen Carey went through, her ultimate decision was to go with a mechanical valve.

Regardless of "preference" and "bias", it is vitally important for us to educate ourselves and to know the correct questions to ask our healthcare providers.

http://www.abc.net.au/austory/

Thanks,
 
Please be aware that the first 15 minutes contain some misinformation about cumulative risks of strokes. It does NOT accumulate as this person is saying. The other missing information was, what was her INR, was she compliant and did she have a competent coumadin manager? If you can get past that, the rest of the story is good. Worth the 30 minutes to watch it.
 
Ross said:
Please be aware that the first 15 minutes contain some misinformation about cumulative risks of strokes. It does NOT accumulate as this person is saying. .
Click to expand...

I also picked up on this part of the film. The risk of stroke may be 2%-5% per year, but it is not cumulative. If I can remember my college math, the year to year risks are "mutually exclusive events", and it is foolish to believe that if you make it thru the first year that your risk in the second year is 4% to 10%, then 6% to l5%, etc. The percentage risk increases with age, due to the aging process, but not on a cumulative basis.

If the risk were cumulative, my current risk of stroke would be 84% to 210%:eek:. Neither I nor any of my docs believe my risk to be anywhere close to those percentages:).
 
A very brave woman Karen is and I hope she continues her quest to educate heart patients as to the questions and concerns to inquire of their doctors.

I have to wonder if she had a St. Jude Silzone valve which was ultimately recalled by St. Jude even though the modification was approved by the FDA..? This voluntary recall was after a very brief and limited clinical trial and after deaths (which to my knowlege haven't been legally) attributed to the Silzone valve. Court cases continue to this day..

None of us have any guarantees ~~ all we can do is ask questions and make sure to have an excellent, outgoing, knowledgeable, persistant health advocate for ourselves when we're in vulnerable health situations and undergoing these serious surgeries.
 
Hank said:
Hello Members,

I hesitated to post this link, as it is an emotional topic.

After much thought - I came to the conclusion that while this may be difficult for some; it conveys the importance of being aware of the decisions before us, and obtaining all information possible.

I find it interesting that after all that Karen Carey went through, her ultimate decision was to go with a mechanical valve.

Regardless of "preference" and "bias", it is vitally important for us to educate ourselves and to know the correct questions to ask our healthcare providers.

http://www.abc.net.au/austory/

Thanks,
Click to expand...

Hank,
I'm very glad that you posted the link. Karen Carey's journey has been a convoluted one--with questions that may never be answered.
 
Duffey said:
Hank,
I'm very glad that you posted the link. Karen Carey's journey has been a convoluted one--with questions that may never be answered.
Click to expand...

After thinking more about the above reply, I decided to see if I could find an address for Karen Carey. I was able to locate an email address for the network show that broadcast the video piece and sent a message inviting Ms Carey to join VR. I had a response from the show's producer, and tonight I had a message from Norman Swan, Ms Carey's partner, saying he would pass my email onto her.
I hope she joins VR so we can find out more details concerning her INR status and if the valve originally implanted was the St. Jude with silizon.
 
dick0236 said:
I also picked up on this part of the film. The risk of stroke may be 2%-5% per year, but it is not cumulative. If I can remember my college math, the year to year risks are "mutually exclusive events", and it is foolish to believe that if you make it thru the first year that your risk in the second year is 4% to 10%, then 6% to l5%, etc. The percentage risk increases with age, due to the aging process, but not on a cumulative basis.

If the risk were cumulative, my current risk of stroke would be 84% to 210%:eek:. Neither I nor any of my docs believe my risk to be anywhere close to those percentages:).
Click to expand...

I just want people to realize that if it did accumulate as this person is saying, everyone with a mechanical valve would have had a stroke by now. It's a mathematical impossibility as well as untrue. ;) Don't get me wrong, if your not followed properly, non compliant, have a bad manager, perhaps a blood disorder or are just plain stupid, Coumadin will bite you. It is to be respected, but not feared.
 
Hank said:
Hello Members,

I hesitated to post this link, as it is an emotional topic.

After much thought - I came to the conclusion that while this may be difficult for some; it conveys the importance of being aware of the decisions before us, and obtaining all information possible.

I find it interesting that after all that Karen Carey went through, her ultimate decision was to go with a mechanical valve.

Regardless of "preference" and "bias", it is vitally important for us to educate ourselves and to know the correct questions to ask our healthcare providers.

http://www.abc.net.au/austory/

Thanks,
Click to expand...


I think she had no other option than to go with a mechanical valve, seeing as it was her third OHS and it would be too risky to go with tissue and face a certain 4th heart surgery. It was a no brainer, IMO. I'd have done the same.

As far as the risk being cumulative - if that's the case, how come Dick0236, RCB, and many many others are still around???:)
 
Thanks for the info .................

Thanks for the info .................

What a horrible experience. I wonder about the state of her INR management though.

No matter how well informed I don't believe any patient on this earth can protect themselves from medical personnel and medical devices. Informed consent is merely a diaper used by professionals to relieve their conscience should something go wrong and does very little for the patient.

My spouse is scheduled to receive a cardiac stent following an angiogram procedure next week. We will be presented with the dreaded "informed consent" sheet, will be forced to sign it otherwise the procedure will be canceled. Talk about having a gun to your head. There isn't any choice. If/when given the chance to ask the cardiologist about what he has done to ensure the stent has been fully tested and is reliable we will receive the brush-off. The word impertinent comes to mind. We won't ask because the situation is stressful enough already for all concerned. We have faith the system will work for us otherwise will have to live with the consequences.

I wish Karen Carey well--she has shouldered a tremendous burden. No one should have to experience what she has.
 
Duffey said:
Hank,
I'm very glad that you posted the link. Karen Carey's journey has been a convoluted one--with questions that may never be answered.
Click to expand...
I finally got around to watching this last night and found it interesting. I'm glad you invited her to join, Mary; she has gone through a lot and probably has much beneficial experience to offer. Also, her three questions for medical procedures sounded very well-phrased.
 
Lance, your post reminded me also that all or nearly all of the doctors in this area also have a clipboard full of pages that must be filled out and signed before they will treat you. The very first one, I kid you not, is nearly always a mitigation agreement, a contract, that if you are injured you agree to go through their mitigator. Sometimes I've filled out several pages like that, mitigation and insurance and various other pages promising to pay and such, and the final page might have a few tiny inquiries as to your state of health and why your are seeing the doctor that day. It makes you wonder :eek: .

Hoping all goes well for you husband.
 
Am I the only one deeply disturbed that something so fundamental and untrue (the part about risk being cumulative) not only was included in the broadcast, but that Karen and her partner did not learn otherwise during an extended court battle involving various experts?
 
Duffey said:
Thanks for this link, Arlyss.
In this transcript, Karen states that there is a 50% mortality rate for third OHS; I know that can't be right.:confused:
Click to expand...

Not unless it is because of all her other problems/history and not the usual stats for elective /planned 3rd surgeries, that is closer to 5%.
 
I watched the clip last night, and I think what happened was that she asked the surgeon before the op what her chances were, and he said 50/50.....but that could be in light of all her co-morbidities. And I'm not sure whether she was referring to actually surviving the operation, or it being a success with no complications. I might go back and read the transcripts.

And, River Wear, I also find it disturbing that Karen and her partner (a qualified doctor) maintain that the risk is cumulative.....
 
This paper, Choice of Prosthetic Heart Valve in Today’s Practice, includes some examples of calculation of morbidity and mortality cumulative risk.

Here is the link http://circ.ahajournals.org/cgi/content/full/117/2/253

It mentions that outcome is mainly determined by patient-related factors. In the case where someone has had a stroke(s), such as this woman, that would be a significant "co-morbidity" in trying to assess the risk for her. My husband's surgery in February 2006 was certainly high risk, as it was performed only about 2.5 months after a very major stroke. Another stroke from the strands on that valve was unthinkable, it had to come out.

Arlyss
 
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