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

" 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. "

there you go...

Back to basics. Interesting! Since this article primarily discussed BC, I discussed it with my wife and she laughed at me. She informed me that mammograms are part of her annual physical and there are no discussions. At 5'10" and 175# I didn't assume that I could be at risk for diabetes, but a simple blood test indicated otherwise; there was no discussion before the test and I would not have had the knowledge to "specifically ask" for the test.
Most of the members on this forum, not all, had a screening test by chance or due to the diligence of their doctors, and I doubt that any (few) declined the test(s) after an "informed discussion". It's interesting to note that the largest medical system in the country requires men at "high risk" to include family history and, potentially, Agent Orange exposure to "specifically request" the psa test and after discussion with his provider the test may be done; is this the cart before the horse syndrome? Most men who have been to the Nam have no idea what a psa test is and have no knowledge of PCa so without this information how could they "specifically ask" for the test.

The question of ethics and morality certainly comes into play here, but we have the pronouncement of the Medico Intelligentsia as gospel. I believe that the "voice of reason" (Clocknut) once stated that it makes sense to give a man a psa test and then have an "informed discussion". I subscribe to his beliefs. "No physician should make decisions on a patient's care without involving the patient". Without going into details, this concept was certainly "blown" in my case.
Bill

Haha.
Keep going I just put some popcorn in the nuke box. I wanna hear how that case comes out. I already have reserved a screen name for that patient: scaredwacko

Merry Christmas, Kurt. And to your bride...

Tony

Patient:  But my insurance isn't very good!

Doc:  Ahhh, don't worry.  You're on Facebook, aren't you...?

The scary thing is that I actually had this conversation with one of the surgeons that I interviewed. The only difference was the answer to the question, "How soon can you operate?". Rather than an upcoming vacation, he had a cancellation in his busy schedule so the reply was, "I can get you in later this week. Let me walk you out to our scheduler so we can get this on the calendar!".

Er...needless to say, the end of the conversation came when I said, "I'll have to get back to you...". Followed by my sprint to the elevator.

Jim

Tony,
I guess that I was like Tud in the about face and sprint to the door after my 10 minute initial consult with my uro when she said she would "take my nerves" and have to cut wider which would leave me permanently incontinent. She definitely informed me of the consequences and probably didn't understand my refusal; maybe all her patients said yes?
Bill

Yooper,
The article is in an ASCO publication. This is what oncologists are getting in their emails today. I think understanding the target audience of this article puts a nice twist on it. Most doctors will tell you that they believe in shared decision making. But it's not wrong to ask why there has been no real scientific data on it. We haven't really discussed this aspect here.

I'd love to help on a trial like this. It's very interesting to me. I think that I would always promote educated decision making. I do not recommend going it alone on anything as serious as cancer. And I certainly don't believe in just letting the doctor make the call.

I hope this article does help folks understand that it's not a perfect world and doctors also make mistakes. All the more reason to be an active participant in the decision making for a patient.

Tony

So I had been reading this thread this morning before Sherry and I went shopping. I was rolling it around and thinking about my take on what should be a no brainer about the absolute requirement of being involved in decisions in medical matters.

The following is a true conversation from today while in the store.

I recognized a guy that I had not seen in about 15 years that I used to work with. He is about 4-5 years younger than me and I remember him as being a top notch technical guy in the communications industry.

So we talked for a while, he met Sherry and I told him I had been married just a few months. I told him about dealing with Pca to which he replied that he had been diagnosed about 3.5 years ago.

He had surgery, radiation and some drugs. When I asked him about his Gleason and staging, he did not have a clue what I was talking about. He talked about some pills he was taking and some shots he had that caused fatigue and muscle loss and so on. I asked what the shots and pills were. Again no clue.

He asked about my being married with the Pca and danced around being married with no sex life. He assumed that the equipment did not work. When I told him that I had recovered from the surgery at about 2 years and enjoyed a very active and satisfying sex life, he was in disbelief. I asked if his nerves had been spared, his answer was a blank look.

With insurance issues throughout the process, he had all of his Pca care through the VA.

Now here is an intelligent, personable, guy that was just totally led from one thing to the next and had not participated at all. The conversation lasted about 20 minutes and I was totally frustrated by it. I mentioned HW to him and by the fact that he didn't write anything down, I know he will never show up here. I realized that there was no need to attempt any education about anything. I made polite small talk and we parted.

I suspicion that he is but one of many more than we care to recognize that has traveled this journey of Pca in this manner.

I believe that we here at HW are the few on this side of the equation of participating in the decisions that are made in how we approach and are treated. Think about it for half a second. Every single one of us is here because we cared enough, participated enough and were intelligent enough to realize that we needed as much info as we could garner as we approached the fight of this crap.

We are the tip and not the base of the iceberg.

Just for what its worth,

Sonny

Sonny thank you for the post. That's a bullseye of what I see in the live groups. New guys showing up (already taking it a bit further than your friend) and know nothing but that they had cancer. No Gleason numbers to discuss no understanding of stage. No understanding that they could even just monitor their illness. Many times it is too late for that. They were already treated and dealing with the morbidities of treatment.

Shared decision making was not what happened there at all. Some men are very content with it. Some men want to be a big part of it. You and I are technical guys with careers that had us troubleshooting and installing (or in my case now managing and selling) but for me I wanted the control back. I wanted this to be my decisions with the necessary input to make educated decisions. I had right out of the gate wanted to talk to others before I made choices. Thank goodness for this website. After I found it I started asking the right questions. The doctor patient dialog definitely changed and so did I ~ from a standard patient to an educated patient.

Peace

Tony

Physicians want to maintain control of the process. They are decisive.

who wants a wishy washy doctor who's not confident in his practice? I like my doctor to have a little swagger. let's face it we aren't doctors and it's easy to play doctor on the internet after the fact. I think in the vast majority of the cases you are better following your doctor's lead.

my urologist laid some options out to me and I asked him "if you were me what would you do?" I already knew the answer to that question.

ed

As Yooper said, it really seems fundamental that men should be a major partner with their physicians when it comes to medical decisions However, while my experience doesn't come close to that of Tony's, I do hear many anecdotal stories that are similar to what Sonny stated. Here in South Florida, where the age and the number of PCa diagnoses are high, it is amazing how few men have any significant understanding of their cancers. Gleason level...huh? Number of cores with cancer...huh? Second opinions....huh? Etc....huh?

There is indeed a digital divide. While many men 65+ are clearly computer literate, there are also many who have trouble reading their email rather less doing internet research. There are many doctors who lead the patients to the answers without true participation. Hopefully this will improve over time...

Jim

“Patients are not looking to cut corners and minimize cost, unless they are held accountable. Patients participate in overtreatment. The key issue is that patients are not good arbiters about the cost-effectiveness of their treatment,” he insisted.

guilt trip the patient for having insurance and thinking only of himself instead of the greater good.

ed