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"Shared Decision Making" What exactly is it? Is there really good value to it?

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Tony Crispino
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Joined : Dec 2006
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Posted 12/16/2013 3:37 PM (GMT -8)
I just received this great article from the ASCO wire. It questions the value of decision based decision making. For example, and as seen here, most guidelines for screening for prostate cancer say it should be a shared decision between the patient and the physician. But we are lacking evidence as to how valuable shared decision making actually is. Enjoy the read...

www.ascopost.com/issues/december-15,-2013/sharing-treatment-decision-making-with-patients-where’s-the-evidence-of-value.aspx

Tony
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Tim G
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Posted 12/16/2013 4:03 PM (GMT -8)
Thanks, Tony.  These are exciting, troubling, complicated, and decisive times for medicine in the U.S. and worldwide.  As an avid reader of medical history, I am thankful that I was born in the era of modern medicine.  Merry Christmas.
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davidg
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Posted 12/16/2013 4:11 PM (GMT -8)
surprise surprise...

"Ultimately, we ought to share decision-making, but the responsibility for cost-containment is in the hands of the doctors,"

Glad they get right to the driving motivating factor.

One day this entire manipulative argument will evolve into a process of directing patients to avoid costly treatment rather than pretending it is about OTOD and potential side effects.
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Tony Crispino
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Posted 12/16/2013 4:40 PM (GMT -8)
David,
Your points are valid but not sure your point on what manipulative argument. Shared decision making goes well beyond ODOT. Share decision making is not a new concept on patients and physicians making decisions together. By all accounts it's one of the most important ethical maneuvers a physician can make in leaving the patient as part of the decision making process. No physician should make decisions on a patients cares without involving the patient.

This article does not state that no value exists but rather asks what is the value of shared decision making. I'm sure you'll agree here. Here's an example:

1. David Samadi decided to do surgery on you and needed to convince you. .

2. You decided on surgery and called David Samadi and told him he's doing it so he did it.

3. After consultation with David Samadi, you both decided that surgery was the right course of action for you.

I would hope you were in line with #3...The shared decision making was only present in #3. The same is true in screening, treatment choices, and when to stop treatment. What was the value? We don't really know. We need trials to ascertain that information.

The ethics in that kind of trial is even controversial. How we could randomize that you make the decision without the doctor, or the doctor makes the decision without the patient, versus the control are of shared decision making would be quite interesting.

Tony

Post Edited (TC-LasVegas) : 12/16/2013 5:44:55 PM (GMT-7)

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davidg
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Posted 12/16/2013 4:57 PM (GMT -8)
Tony, your scenario is completely off the mark.

I decided to go with surgery before I met Samadi. He did not convince me that surgery was the best option for me. I did not go to him to have him convince me that surgery was my best option. I sought him out because I thought he was an elite surgeon and I had already decided on surgery. All he had to convince me about, was that the results I would get from him vis-a-vis my local small town urologist/surgeon were far more promising. That wasn't hard to do.

The guy who discovered my cancer talked to me about my cancer, how "freakishly" small and unexpected it was (his words) and what my options were. He said I had 3 options. We discussed them. After that, if I wanted to attempt to cure my cancer with jalapeno peppers it would have been my decision.

My decision was made with my family. My urologist helped educate me about my choices. I told him what choice I had made. Then I sought out an elite practitioner and my urologist told me to never bother to visit him again even after my surgery. In fact, I don't have a urologist right now.
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F8
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Posted 12/16/2013 5:17 PM (GMT -8)
No physician should make decisions on a patients cares without involving the patient.

this is so profound that I think i'll take a nap. must have been a slow news day.

ed
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Tony Crispino
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Posted 12/16/2013 6:27 PM (GMT -8)
David,
LOL good enough. You probably had a lot more than just three options though (RP open or robots, RT in many ways, Cryo, HIFU, ADT, Trial, etc). But it sounds like you were number two. You chose your option and didn't discuss this with your treating physician? We differ in that way. I certainly would have asked him if he felt it was right for my case.

Ed,
Have a nice day.

Tony
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davidg
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Posted 12/16/2013 6:45 PM (GMT -8)
No, Tony, wrong assumption again.. I did discuss all the potential side effects, percentages, cure rates etc. We even discussed dry orgasms. Every expert I spoke with talked of three options, some, because of my age, kept it at two options. For the purpose of this discussion I'm counting all surgery and RT options as two options. Although I personally discounted open surgery as soon as I read up on robotic. I was scared of open. We don't differ, I actually asked them re why you're putting words in my mouth. Not only did I ask, but all of them recommended surgery given the particulars of my situation. This was fine with me because although I hated having to make the decision at all, I was wired for surgery. How on earth would I know what do without talking to the experts? After all, I barely knew what a prostate was before I got sick.
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Tony Crispino
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Posted 12/16/2013 6:51 PM (GMT -8)
Well I apologize.
When I said you made a shared decision you said I was wrong that you decided what to do and acquired your surgeon. When I said that is number two in the choices you said I was wrong and you hinted that you did consult with and made a shared decision that involved your surgeon. I'm probably wrong again...

But this can go on and I won't entertain it. You are doing well and that's what matters.

Tony

Post Edited (TC-LasVegas) : 12/16/2013 7:54:03 PM (GMT-7)

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davidg
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Posted 12/16/2013 7:05 PM (GMT -8)
Tony, I'm having a hard time following you. You mentioned Samadi, and I don't know why. The bulk of my learning process occurred before I met Samadi. He was not the guy who found my cancer, he was not my urologist, and although also an oncologist, he was not the first oncologist I spoke with. He was the expert I sought out after making my decision, a decision reached thanks to the input of several experts (not all surgeons). The decision itself was made with my family after we all learned a lot from the experts. My wife came with me to visits, my sister really dug deep in her research (it' what she does for a living. She too calls herself an advocate)

I'm doing well because I'm lucky, and because I was wise to treat it and to do so with a really skilled practitioner.

I'm not sure how my process can be that different than that traveled by most of us. There might be a small minority who make a fetish out of getting academic about it, a small portion who just jump into treatment or surveillance strictly based on what their doctor tells them to do, but surely the vast majority go through a process that involves preferences, family and experts.
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Tony Crispino
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Posted 12/16/2013 7:14 PM (GMT -8)
"I'm not sure how my process can be that different than that traveled by most of us."

Well for one you differ in that statistically, most PCa patients (this includes patients that do not do research online) let their diagnosing physician make the recommendation they go with. And many do not check out that information. I think that's where ethics break down. The physician made the decision and kept directing the patient to that decision.

I mentioned Samadi because that was your physician. You came here in high praise of him and ran into scrutiny because of it. I remember it well. I meant nothing derogatory I just tried to personalize the example. I still have the original Emails we shared when you decided to leave HW out of the gate but I asked that you stay. That your input was valuable.

Tony
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Purgatory
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Posted 12/16/2013 7:21 PM (GMT -8)
davidg said:

but surely the vast majority go through a process that involves preferences, family and experts.

I think that's an accurate statement of the majority of men who darken our portals here at HW PC.

Thought that was a fair statement for most of us.

David
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davidg
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Posted 12/16/2013 7:23 PM (GMT -8)
I'm not sure docs like Samadi, Tewari etc actually find the cancer. I think our smalltown local urologists do all the work and then see us take their hard work to the :hired guns". It must be very frustrating for them.

I have a hard time believing most men blindly do what their docs tell them to do without learning about it int he process. We're not talking about taking a round of antibiotics, were talking about radiation, robots, cuts and potential big side effects. What I think is a more likely scenario is that docs are good ethical hard working people who typically advise on the right course of action because that is what they believe in. Men will end up doing something that favors one doc or another regardless of his/her expertise. SO basically to me your describing a self fulfilling prophecy.
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Purgatory
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Posted 12/16/2013 7:26 PM (GMT -8)
In my own PC case, I can honestly say, that my uro, even though he was a very experienced uro/surgeon, never once pressured me to make a surgical decision.

In fact, he helped me work through the whole gambit of primary treatments. The only one he had strong opposition to (based on his extensive experience as a uro) was cryo. And he made a good case against choosing it.

He knew I had an early bias for "seed", and never tried to discourage me from it. It was a RO, that told me that with my PSA velocity issues, being at least a G7, that he was recommending surgery as my primary treatment choice, not my uro.

It was definitely a shared decision. Me, my uro, the RO, my own research, and I would love to have said input from HW PC, but my decision had been made before ever being aware of HW PC.

More and more of our new men, in particular the past 18 months or so by my count, come here fairly educated on their own merits, about the basics of PC, and the general notions of primary treatment choices available to them.

Seems, by observation, that's its becoming the rare guy, that comes here ranting and raving about having to "have it cut out" at all costs, regardless of diagnosis or other stats. I think that is a great improvement on how things were more common even 2-3 years ago here.

David in SC
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Tony Crispino
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Posted 12/16/2013 7:33 PM (GMT -8)
According to statistics, 75% of decisions made in treatment are accepted by the patient without questioning the treatment. In cancer as well as in many things we go and see the general practitioner for. For example many get flu shots with out questions. Many catch a cold and take whatever antibiotics they recommend without asking "what other choices are there?".

In cancer, most urologists diagnosed the disease and also recommended themselves for therapy pretty much 90% of the time until recent years. And by that I mean very recent years. Even today the diagnosing urologist will frequently recommend radiation therapy by a physician down the hall and most patients will say they got a second opinion from that hired gun.

I know for a fact that it's still rampant that the deciders tend to be a "trusted" source rather than a researched source. Most patients are still on the other side of the digital divide. They do not have the resources that you and I share here online. And those on that other side tend to go to the library and view what many times is outdated material.

In the support group I run, it's still common for a physician guest speaker to have bad data about treatment choices and options. And if the physicians are not current ~ their patients probably are not either.

Tony

Post Edited (TC-LasVegas) : 12/16/2013 10:31:04 PM (GMT-7)

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Tim G
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Posted 12/16/2013 8:24 PM (GMT -8)

TC-LasVegas said...
According to statistics, 75% of decisions made in treatment are accepted by the patient without questing the treatment. In cancer as well as in many things we go and see the general practitioner for. For example many get flu shots with out questions. Many catch a cold and take whatever antibiotics they recommend without asking "what other choices are there?".

In cancer, most urologists diagnosed the disease and also recommended themselves for therapy pretty much 90% of the time until recent years. And by that I mean very recent years. Even today the diagnosing urologist will frequently recommend radiation therapy by a physician down the hall and most patients will say they got a second opinion from that hired gun.

I know for a fact that it's still rampant that the deciders tend to be a "trusted" source rather than a researched source. Most patients are still on the other side of the digital divide. They do not have the resources that you and I share here online. And those on that other side tend to go to the library and view what many times is outdated material.

In the support group I run, it's still common for a physician guest speaker to have bad data about treatment choices and options. And if the physicians are not current ~ their patients probably are not either.

Tony

+1  It goes without saying--but I'll say it--that the men who post here are the very tip of the shared-decision iceberg: they are men who do their research, get multiple opinions, and weigh decisions with full knowlegde of possible outcomes. I'm also going to go out on a very thin limb and say that more women than men are engaged in medical decision-making. (I've often wondered how involved in decision-making the men are whose wives post here.)

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Tony Crispino
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Posted 12/16/2013 9:49 PM (GMT -8)
Bullseye, Tim!

I agree with all you wrote! But the men who don't post here are plentiful. And they are not exposed to what we see.

Ugh!

Tony
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davidg
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Posted 12/17/2013 3:44 AM (GMT -8)
Tony - or they just don't need to post on a forum, participate in help groups, and want to just move on with their lives.

I see this as a manufactured "problem" with a clear goal in mind.If you pretend that a significant proportion of men are coerced into (expensive) treatment then you have the grounds to "educate them about less expensive and invasive options. That's how I see it.
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Tony Crispino
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Posted 12/17/2013 8:23 AM (GMT -8)
David,
You ought to try attending live support groups. It's clear to me you do not. I see both sides and understand that there is a need for both. When we do outreach with our support group, going to retirement communities and such, there is a large pool of uninformed PCa survivors.

Tony
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Bohemond
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Posted 12/17/2013 8:31 AM (GMT -8)
I have to say that I was impressed by the professional standards at the time of my original diagnosis. My urologist discussed surgical and radiation options. He also referred me to a medical oncologist, who was part of the same university medical center, but who would not have been directly involved in in either surgical or radiation treatments. I chose surgery, but believe I wasn't pressured and made a well-informed decision. I understand though that this may not be the norm for all or even most patients' experience.
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davidg
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Posted 12/17/2013 8:57 AM (GMT -8)
That's not my thing, Tony. I'm sure it's very helpful for many men. Just pointing out that the vast majority of men move on with their lives after treatment and don't post on forums or attend live groups.
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Tony Crispino
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Posted 12/17/2013 9:09 AM (GMT -8)
That's a hypothesis David.
What I see here is most are "glad they found this website" because they were not getting the information the other way. And while HW has the busiest website for PCa that I've seen, we have about 5000 men or so that came here since I've been here. Talking with InfoLink site master Mike Scott we hypothesize that all the support websites collectively represent less than 1% of newly diagnosed men. So while this community is busy, there are 250,000 men diagnosed each year that do not research in their cancer. Many wives and daughters pick it up but we still see a very small percentage of the community online getting advice. Where do most get their information? In that 15-30 minute session in the examination room. Informed decision making needs so much more than that, Shared decision making today means that the doc diagnoses and recommends and the patients starts therapy.

Call me the dreamer but we can do better than that...

Tony
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davidg
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Posted 12/17/2013 9:15 AM (GMT -8)
Tony, that's not a hypothesis. Look at how many men get diagnosed and/or treated with PCa yearly and then see how many are participants in support groups. People move on, specially those without issues. Over the cours eof 3 years I have met quite a few men with PCa, including men in my town, none participate in support groups and as far as I know I'm the only one on a forum. You also see many guys here who say they are stopping by less often and moving on.

I didn't say people are unhappy they found the website. You're mixing apples and oranges again.

You don't know what those 250K men are doing. I had an hour session initially with my first guy. Also went home with brochures and pamphlets.

I don't think the situation is anywhere near as dire as you portray it vis-a-vis informing patients. Then again, I'm not trying to change the landscape to " "Ultimately, we ought to share decision-making, but the responsibility for cost-containment is in the hands of the doctors,".
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Tim G
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Posted 12/17/2013 9:24 AM (GMT -8)
Tony,

I was relieved and thankful to find this web site over seven years ago, even though it was after the deed was done (prostatectomy). The dismal statistics regarding men who make informed medical decisions is disheartening. I read four books by PCa experts and got second opinions during the nine-month gestation period between my first rise in PSA, biopsy, then open-zipper surgery.
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Tony Crispino
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Posted 12/17/2013 10:06 AM (GMT -8)
Tim,
Remembering that the median age at Dx is 67yo that means that half of the newly diagnosed are older than that. Online support is not as readily accessed by our older brothers. The ages of the live support group are much higher than they are here at HW where I estimate the median age to be 53-54yo. That's quite a gap. Many of these men found the support group I run by calling the ACS or by calling a Patient Advocate at their care center after they were treated. I am used to hearing that they wished they had found better resources before diving into the waters.

Many men will read books but books can be outdated. Even here patients come and discover options they didn't know they had after reading books.

It is disheartening but we're getting better at it. I think the article above raises many good points about informed and shared decision making. But I'm still seeing men showing up in the live group healing their surgery after their Dx just a month before. Mild cases even that probably could have waited years to treat if ever.

I don't know why I had never heard of a PSA test when I diagnosed with advanced PCa. But the likely answer is a good reason to strive to make getting information easier.

Tony
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