Medical Shared Decision Making, anyone?

[zombelina]

"Shared decision making" and "patient-centered care" are big buzzwords in health care lately. Having had several doctors for various reasons, I have noticed that some have a more paternalistic style of medicine, some seem to think they are practicing shared decision making but aren't quite hitting the mark, and some are pros at it. I have also noticed that it tends to vary depending on the region. In the northeast, it seems much more common than in the south. I LOVE shared decision making when it is done properly. To me it means feeling heard and in control of my health. When a doctor just tells me what to do without asking a single thing about what I want or giving me any detailed info, I am less likely to comply with the treatment because I don't fully understand what is going on. This has hurt me in the past.

When a doctor presents a list of options for treatment, explains their benefits and drawbacks and asks me what I would prefer to do (which may be more "informed decision making" than shared), I appreciate the doctor more for surrendering some of their own control and taking the extra time to discuss options. I feel like you have to be a confident professional to be willing to do that. Of course there have been times when I was too confused or overwhelmed to make a decision. I think there is an art to the doctor sensing a person's personal state and knowing that their desire and ability to share in the decision may vary over the course of the relationship.

Does anyone have the same, a similar or a totally different preference? I think people on here may have more health literacy than most, and I'm sure that affects preferences as well. I know when I have a new problem or condition I am less able to be proactive, but with a longstanding issue like epilepsy I feel a need to be more in charge, so to speak. I know myself and my epilepsy better than anyone else.

 

[Cint]

"Shared decision making" and "patient-centered care" are big buzzwords in health care lately. Having had several doctors for various reasons, I have noticed that some have a more paternalistic style of medicine, some seem to think they are practicing shared decision making but aren't quite hitting the mark, and some are pros at it. I have also noticed that it tends to vary depending on the region. In the northeast, it seems much more common than in the south.

When I had my lobectomy, I lived in Memphis and it was done at UT. I had some of the best docs caring for me there than anywhere. The ones there at the time started the Epi-Care Center, a care center specializing in Epilepsy and the complications that go along with it. It also had a neuropsychologist and a neuropsychiatrist, which a lot of places, north, south, east or west don't have. My epileptologist was on the National Board of the Epilepsy Foundation. After my failed lobectomy and when we started trying different meds, my these docs heard me when things weren't working for me. It got to the point that my epileptologist started asking me if it was okay if we stopped one drug and started something different. So did my neuropsychiatrist. They always knew to ask me. I would let them know my opinion, regardless. I'd had tooooo many problems already.

I LOVE shared decision making when it is done properly. To me it means feeling heard and in control of my health. When a doctor just tells me what to do without asking a single thing about what I want or giving me any detailed info, I am less likely to comply with the treatment because I don't fully understand what is going on. This has hurt me in the past.

This is why a patient needs to start asking the dr. to explain things which aren't understood. They're human, not gods. They're not mind readers, so if one doesn't understand, tell the dr.

When a doctor presents a list of options for treatment, explains their benefits and drawbacks and asks me what I would prefer to do (which may be more "informed decision making" than shared), I appreciate the doctor more for surrendering some of their own control and taking the extra time to discuss options. I feel like you have to be a confident professional to be willing to do that. Of course there have been times when I was too confused or overwhelmed to make a decision. I think there is an art to the doctor sensing a person's personal state and knowing that their desire and ability to share in the decision may vary over the course of the relationship.

Does anyone have the same, a similar or a totally different preference? I think people on here may have more health literacy than most, and I'm sure that affects preferences as well. I know when I have a new problem or condition I am less able to be proactive, but with a longstanding issue like epilepsy I feel a need to be more in charge, so to speak. I know myself and my epilepsy better than anyone else.

I don't know if confidence has anything to do with taking that extra time with a patient. I think it has to do with the patient's health. I go to several specialists at the same hospital here in Denver now and I receive the same respect from both. My endocrinologist is the BEST in the region and people have been put on LONG waiting lists to get in to see him. And since I have to ride the Light Rail downtown to see them, several times I've been late to both doc's appointments, but they are both gracious enough to let me keep my appointments anyway. Not all doc's offices would do that. Last time I was in to see my endo, I was 20 minutes late because of the bus system, but my dr. allowed me to see him anyway. When he came into the room and I apologized for being so late, he said, "I knew you'd be here." I was nearly in tears. And when the appt. was done, he gave be a BIG hug! Now how's that for a pro?! Don't you wish ALL docs could be so genuine?!

 

[seagull]

I afraid you find most doctors google it as do I. may aswel cut doc out just use dr google

 

[Nakamova]

I think people on here may have more health literacy than most, and I'm sure that affects preferences as well. I know when I have a new problem or condition I am less able to be proactive, but with a longstanding issue like epilepsy I feel a need to be more in charge, so to speak. I know myself and my epilepsy better than anyone else.

The more I've learned about seizures in general and my own seizure susceptibility in particular, the more I've hoped for a collaborative and open-minded neurologist -- one who would "get" me and my concerns. But I've found that even the best-intentioned neuros are hampered by time constraints. I'm still looking for the one who's a "gem"; since my seizures are currently controlled by meds though, my search isn't as urgent as it might be for others.

 

[Fedup]

The one common denominator I find is the time constraint placed on neurologist in Ireland, at the moment it is more "you are a number" than a patient or person and then you have the problem of, I am the doctor you do as I say, goodbye. I have had neurologist who believe in talking to the person and explaining what is happening. For some unhealthy reason at the moment there seems to be a God complex among the neurologists I have seen lately, maybe its the fact I am older than them or that like you I like to have my say and being listened to.

Shared decision making would be ideal and the interaction would make things go very smoothly for all concerned. But until such a time comes we have to carry on with what cards we are dealt. I believe that it does not matter what the problem maybe that a person has they are entitled to a good, civil and professional appointment. No person can know you better than yourself. I wait in hope.

There is an art to being a doctor/neurologist but there is also an art to being a person.

 

[Matthew74]

When I was in Arkansas the medical professionals I dealt with there came across as paternalistic. It was sort of like, "Honey, you just do exactly as I tell you, and don't think about it too much." My doctor was ok, but the secretaries and nurses talked down to me. Maybe that makes some people feel like they're being taken care of. It was culture shock for me.

Wherever you are you run into doctors who can't handle being questioned, or who would rather "inform" than "discuss".

 

[MichaelJO7]

Does anyone have the same, a similar or a totally different preference? I think people on here may have more health literacy than most, and I'm sure that affects preferences as well. I know when I have a new problem or condition I am less able to be proactive, but with a longstanding issue like epilepsy I feel a need to be more in charge, so to speak. I know myself and my epilepsy better than anyone else.

Good post, Zombelina.

I prefer shared decision making, but have yet to find a doctor who does feel comfortable with it. There are times, like you, when I can't make the best decisions for myself, but that does not mean I should ever be out of the loop.

I have found that the more I educate myself, the more threatened doctors tend to feel. I just had an experience where I was forced to go to the ER because of my seizures (the police were called), and even though I was very ill, I felt very violated. Once I get in the ER, I can never talk fast enough to cover all the bases because my health conditions are so complex, and the doctor's knowledge is only general. I invariably say something that they did not know, and they attack it or the "wall" goes up. I have to present knowledge to level the playing field for a "fixed" game.

I will always promote self-reliance and education because it truly is the most responsible thing to do, particularly for the middle aged whose experiences have taught them that this is a necessity. The young and the elderly are not in the same boat, but autonomy and independence shouild still be a goal whenever possible. I have stated it before in a post that we can learn more than we think we can (if we persevere).

I would have been dead by now if I did not believe that and practice that.

I was not born with the internal fortitude (nor have I been able to develop it) to deal with all of this, which complicates issues even more. I know that there are others who feel the same way.

A few years ago I spoke with a mechanic who explained step by step what the potential problems could be when it comes to starting a car. He did not give me the typical "bring it in and we will look at it" while failing to give me any information to help myself. I am significantly more inclined to bring my vehicle to such a mechanic because he demonstrated to me, through his terminology, that he knew what he was talling about, and did not leave too many bases uncovered, and he also demonstrated to me that he was more interested in helping me fix my problem than in earning money and maintaining his "power."

Even if the terminology is technical, bring it on! I can learn, even if only slowly as is the case presently. Who knows. I may develop more competency than anyone thought possible. Don't many of us aspire to be more than we are?

 

[valeriedl]

I'll let my neuro let know what's been going on and will discuess why they could be happening. He'll give me some suggestions on things that he thinks would be beneficial like med changes or adjusting my VNS and talks about the goods and bad that they could cause. He leaves the end decision to me. Not once has he ever said "This is what you are going to do - I insist!"

His physicians ass, oops I mean assistant, was the complete opposite. She didn't listen to a word I had to say. She didn't need to because in some sort of way she thought she was a psychic and already knew what was happening and why. It was usually because I wasn't taking my meds, which I always do but she didn't believe me. She would tell me exactly what to do, start taking my meds, and things would be better. I blew up in the office about her and haven't seen her since, only my actual neuro. The ass, oops I didn't it again, assistant won't even look at me now if she sees me sitting in the waiting room!

 

[zombelina]

There is an art to being a doctor/neurologist but there is also an art to being a person.

So true! It sounds like I am pretty lucky to feel like I have a "partnership" with my doctor. No doctor and no person is perfect, and just last year I caught a pretty important mistake on her part. For many of us, being vigilant is a way of survival and we know that control in life is an illusion. Maybe that's why it's so gratifying to have a say in what comes next.

 

[zombelina]

A few years ago I spoke with a mechanic who explained step by step what the potential problems could be when it comes to starting a car. He did not give me the typical "bring it in and we will look at it" while failing to give me any information to help myself. I am significantly more inclined to bring my vehicle to such a mechanic because he demonstrated to me, through his terminology, that he knew what he was talling about, and did not leave too many bases uncovered, and he also demonstrated to me that he was more interested in helping me fix my problem than in earning money and maintaining his "power."

This is a perfect analogy!