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

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.

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)

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

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.

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.

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

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

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.)

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.

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.

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

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.