Shared decision-making has been defined as "an approach where clinicians (healthcare professionals) and patients share the best available evidence when faced with the task of making decisions, and where patients are supported to consider options to achieve informed preferences."
- Reading this, does this change your understanding of SDM and what it means to you?
- What aspects of SDM do you think you currently do?
For me this is a long-winded version of my answer yesterday. It does not change my understanding of the notion. I constantly stay informed and give myself time to consider everything before I plump for a decision.
my neuro works with me,I do my research on new meds,then feel him out,I don't want his decisions based on the phama companies info to him ,I want the decisions based on a combination of my research and his info.He does know more than I do usually,I want what is best for me and you certainly have to have a neuro you trust
Well, that's how my Neuro's dealt with my care on a lot of issues, and that worked great. For certain medicinal issues, not as much. But, I still researched what others were saying about what do was on. I know others may not be able to do so, and they are then at the sole recommendations of their doc. But, where I always came to an exam armed with info and questions, it worked well.
SDM is defined as "an approach where clinicians (healthcare professionals) and patients share the best available evidence when faced with the task of making decisions, and where patients are supported to consider options to achieve informed preferences." Very simply, this has not been my experience. After I was given the diagnosis of MS over the phone, I had a follow-up appointment with the female neurologist who had diagnosed my symptoms. My daughter accompanied me to the office in a well-known teaching hospital in the state capitol. When the neurologist told me that no DMTs would be prescribed because of my age (I was 70 at the time), I asked if there were alternatives to DMTs. Much to my astonishment, the neurologist suggested foot baths to remove toxins, a diet consisting of a monthly 7 day fast, followed by lettuce, peanut butter and the gradual reintroduction of other foods to be repeated ad infinitum, a magic crystal that glows, and copper bracelets. My daughter was appalled and wanted to report the doctor to the licensing board. I refused to do so; the doctor's first language is not English; I assumed there had been a cultural misunderstanding. I have never told this story before. I also never returned to see her.
Citing distance and city congestion, I asked my internist for a referral to another neurologist, and thus began my series of unsatisfactory interactions with neurologists. With only one exception, none have practiced any form of shared decision making. Most have conveyed no more interest in me than if they were selecting apples from a bin at the market. I wish this weren't so. Perhaps in an ideal world, or a more enlightened region it would be possible to experience shared decision making but as I am unlikely to relocate, I will continue to rely on information from others with MS, national organizations like MSAA, and my common sense.
Yes, I find most physicians, especially the men, are distant, cold, noninteractive, do not listen and if, in my case, if I bring new PubMed type information to them, they become standoff-ish and do not want to "know it". By exhaustive reading in the medical scientific literature and just plain scientific literature, I have changed a number of aspects of my life style. I do think by NOT taking the neurologists recommendations I have survived longer. I think they do not ever walk in our shoes and I now think they are not as smart as I have been told they are...certainly I have never heard them ask about how MS is affecting my life.
You may be interested in knowing about a VA study done in Washington State about the use of lipoic acid. If you can find it, let me know. I read about it in what is called "VA News" or some such thing. Apparently Lipoic Acid come in two forms, entaminers of each other (globalhealingcenter.com/sup... and the sodium salt of R lipoic acid is what our body uses. I bring up this because I am not as worried about my body as I am my brain. However, there is nothing about this product available to the VA docs for them to use. Isn't that interesting?
I take a lot of supplements. I do this on my own. My neurologist who was not a specialist aske me why I spend so much $ on supplements. My PCP and now MS neurologist has not questioned me. I don't know for sure if these supplements do anything or not, and whether or not this is genetic or luck, my MS has been mild since I was dx'd at age 57. Before that I had no clue I had anything wrong. So I am not sure if supplements are helping or not, but I'm not cutting them out yet. Since I turned 71 this year I came off my DMT (personal decision and reading about this and talking with my ms specialist) and so that makes my supplements a little more affordable!
No, shared decision making is as defined above and does not change how it has been used in veterinary medicine when I was at Texas A&M. It is not different than what I used in Oregon with my patients. It is not different from what I use even in my own family for the last 40 years. (My kids have not always been pleased by its use as it does depend on logic or deductive reasoning. My son always was happy with what we decided would be the best course of action. My daughters not so much so.)
I think the last question is odd as I do not see shared decision making as having "aspects". It is a method of decision making between two or more people.
Based on that description, I believe that SDM should always be the approach. I have always, even before MS, looked at it that way. Medical professionals should never dictate to their patients -- there should always be a partnership. When patients have all of the information, they need to be supported in their decisions by their healthcare team!
There was no shared decisive making for me at the Mayo clinic. After DX, I left and found a neurologist where this is practiced. He suggests, I listen and research. He listens and answers my questions. Together we decide on the best options.
I have always viewed SDM to be where clinicians and patients/caregivers take an active role in treatment decisions. Ideally, I would love my Neurologist to present information about various treatment options, then allow me to make an informed decision about what path to take.
In reality, though, my health insurance policy plays the biggest role in the decision making for my MS treatment. I do not have access to an MS Specialist in my network, and the general Neurologist I see doesn't have the staff to devote to filing prior authorizations and/or peer-to-peer reviews to obtain adequate patient care.
I haven’t been with my current neurologist quite long enough to know for sure but so far I feel much better about the prospect of shared decision making. Just recently when discussing whether to increase the Rebif dosage, my NP said “This is a democracy.” I loved that!
The reason I left my original neurologist is precisely because of the lack of SDM. He recommended Aubagio and when I asked about alternatives, after doing some cursory research and pondering, he explained why he would stay away from some of the other pills (risk of PML). For whatever reason he didn’t even entertain the injectables and simply said that Aubagio was my best choice. I was left with the feeling, rightly or wrongly, that he must be getting some benefit for being so dead set on that one drug.
My second-opinion neurologist treated me with much more respect and we settled on Copaxone, and later on Rebif. It felt a lot more like SDM. However, when I had a subclinical relapse I was given a five-day Solumedrol infusion, and in retrospect I realize that was not SDM. Based on what I’ve learned in this forum just recently, the next time I’m faced with the prospect of a steroid infusion I will be better informed and more able to discuss the pros and cons—and this time with the support of a more “democratic” neurology practice.
No changes in the way I think
Yes a better understanding of shared decision making. I have very good MS neurologists who do listen to me and MS nurse. I do not think my doctors read all my charts for I see other doctors in the same clinic whose system allows all of the doctors to read each others records within that system for their clinics. I do believe we as a team especially with my neurologist work together in finding the best solution to helping me with my MS and other symptoms or conditions because I also deal with thyroid issues because of cancer, migraines, depression etc.
I do see also psychologist and health coach for depression etc.
Thank you again for allowing all of us to have a say and voice OUR OPINIONS in this forum. It is much needed!
God bless you all
Becky 54 I am very interested in your seeing a psychologist and "health coach for your depression. Suddenly I am dealing with depression. I am almost 80 and have had periods of being down but not for long intermittently all my life. This time it is different. It seems aggressive and at times all consuming. I can't decide if it is situational, genetic, due to my drugs or the MS which is SPMS or just PMS/RA and pain all the time. Or a combination. Is your work with the psych and health nurse having good results? If you feel like you can, what is actually helping you.
Hi Bodega 1939
They have really helped me with my depression. I was very depressed a couple years ago. You don't realize how bad you always are until you start talking about how you are feeling. These people don't blame you or make you feel worse but help you to see and define why you are down and what's causing it. And help you change your own thinking and a different way to deal/talk about life to others and handling situations.
I'm no expert on this just trying to make it through my depression. It's an on going in my life. God bless I pray I may have helped you a little.
As a former mental health professional, I highly recommend seeking out Psychological Services for any type of depression. In my experience , it doesn't matter where your depression is coming from. Talking about it with a qualified professional can help sort that out and I would suggest someone who works with CBT, cognitive behavioral therapy. This has very good results with people
Yes,
CBT works very well if there is a focal point. I cannot seem to set a focal point. Thanks for your remarks. I will see what I can conjure up and then see if it helps.
I have been fortunate in that everyone in my medical team communicate with me any course of action. I receive a lot of information, and I always have the last word in any treatment. I am always encouraged to research everything for myself. My doctor(s) is/are there to answer any questions that I have.
Communication is key, always.
Keep Smiling,
Carole 
I use the shared decision making model for everything related to MS. My providers on the other hand do not always welcome this approach. I have neurology provider, a PA in the Department of Neurology at the local university, tell me that it was NOT helpful for me to go to other neurologist for an opinion and bring their documentation back to them. She said it just confuses the picture. I explained to her that she need not take it personally but I would/will continue to seek out other providers and treatment because it just might be the one thing that helps me get better. How do I know unless I go see them? I was semi-nice during the conversation.
To abdicate your responsibility to participate in healthcare decisions would mean you trust another to always know what is best for you. How can that be? I’d hate to do that. No one can know as much about me as I think I do. I had a gastroenterologist that would not talk to me. She’d just prescribe and when I balked and said she doesn’t know a damned thing about my MS I was sent a register letter saying I could no longer see her. Fine, she may be exception as a doctor but her communication with patients is direly lacking. The trust was gone I’d prefer to have the facts and make a shared decision.
Carolyn
I'm grateful for the changes I've seen over the years. When I was a nurse in the Dark Ages, doctors often believed themselves to be godlike, and patients blindly followed their doctors' advice. Although there is so much misinformation on the web, patients now have access to more information about diseases and treatments. I think this has helped create a change in the relationship with patients asking many more questions. I have always asked many questions in regard to my family's or my healthcare.
My doctor uses this practice at every appointment. I also always have another set of ears with me just in case I miss something. I appreciate all the information she makes available, that way I can make an educated decision
I think I got it and was pretty familiar, again terms change over time.
I think it’s extremely important for treatment purposes to be your own advocate with guidance from the doctor on what’s best for you. I know for me, I go to any life event for any and all drugs, to find out new information to be able to better my life. I read about MS and get articles sent daily on various aspects of what life is like with MS and other people’s stories. I think it’s a combination of knowing what’s best for you because you’ve done your homework but then working with your doctor to see if they are on the same page. I think doctors today are more eager to hear what you have to say and want you’re input since it’s your body, your life etc. Shared decision making is important because you have to be smart about what you decide to do with your MS journey. I think being your own driving force and fighting for yourself is important and in conjunction to what your doctor feels is best.
Yes I understand it. I do none.
It doesn't change anything for me.'As far as shared decisions, I talk things over with my husband.
I wish I could get sdm. I have found doctors do not have time to discuss all symptoms I have, let alone coordinate. I can't blame them, they don't get enough money these days. Every doctor visit is spent in a fifteen minute time frame where doctor spends all of it on computer answering questions. They let the insurance companies take charge of health decisions. Insurance companies are bottom-line driven. Now I've found even my pharmacy is deciding which meds they will or won't dispense. Also, I bring my reports and test results with me as I know coordination is unlikely and I've been told that if that doctor prescribed test then i need to discuss with that doctor. Ms is a disease affecting multiple body functions. It requires many specialists. Ms centers I believe may coordinate care but are few and far between.
Yes, it changes my understanding. I agree that the patient and doctor needs to openly talk and collaborate, but I still believe that significant others, such as a spouse needs to have input as well.
I read everything I can get my hands on so when my doctor prescribes a course of action I will have an informed opinion.
None, sorry as I have said before, I and I alone make the final decision about my health. I of course accept wiser informational input but I make any and all final decisions. How else could I be an active participant with my health care. The buck stops with ME I am the one at 3 am in pain, the one in my head, nobody else, just little old me.
I am with you on this one Royce. 👍
No, this definition is exactly what I thought and that I responded to yesterday.
I think it reaffirms my belief in SDM. That being said, I don't think that I have totally SDM between me, my husband/care partner and doctor. The trouble is, I need longer to process information, not in a 15 minute appt to make a decision about my future.
I have a good relationship with my neurologist. We talk about treatment options, concerns, etc. He expresses his opinion, knowledge, concerns and then I do the same. We then discus what our next step is. It's not just the doctor's job to be knowledgeable about my health and treatments, its also mine to research and ask questions. I've had doctors in the past who believed they know best and basically said "just do this" To me that's not acceptable, they do not know how I feel or what is always best for me. I went to 3 different neurologist until I found the one that best has the knowledge and treatment style that works for me.
Shared Decision Making to me is meaning everyone involved with my care helps determine my symptom changes or progression, possible treatments or prescription dosage changes, or different prescriptions. Firstly, and maybe most important, it is my duty to keep an accurate journal of any changes, symptoms, etc. And to report these to the doctor or nurse coordinator. When I arrive a my Neuro appt. I am weighed, BP & heart rate taken. I can hand that technician any outside updates, such as flu vaccines, Mammogram report, most recently, my orthopedic MRI report & doctors recommendation of a hip replacement. Which will probably happen in June.
I am weighed and my height recorded. It seems my height is slowly going down. I was 5'6" before, now in the last few years, It's down to just 5'4 &1/2" Scary! Once in with the doctor, there is usually a resident or two from the Affiliated University. Doctor does tests to check my balance, eyesight and strength. We discuss any new issues I may be having and determine if I may need to change any medicines. From recent visit, I am going to change 1 medicine to help deal with increased leg spasms and pain from them. I find it interesting that doctors are hesitant to prescribe Opioid pain relief because of new government regulations. Residents sitting in on my appts are allowed to voice opinions and also point out areas of interest on my MRI's or test results. At my last appt. Doctor agreed to start me on my first DMT, pending results of bloods tests from the 10 vials of blood they took at that time. I am able to go online and can see my results are all normal to super normal. So now, I contact the doctor's nurse coordinator and find out where we go from here. So you see, in this lady's opinion, there is quite a multitude of people involved in my Shared Decision Making! gilly57 this has been my very long-winded version of SDM😊👨⚕️🏥💊🌡👩⚕️
No it doesn’t change much for me. It’s what I’ve always done. I definitely have to question everything and use a wait and see approach when it comes to new meds. The only time that I took my neuro’s advice without doing my homework, it didn’t go well for me.
MSAA Online Focus Group - Day 3
- Reading this, does this change your understanding of SDM and what it means to you?
Nope, still means the same thing to me.
- What aspects of SDM do you think you currently do?
Within a speciality information is shared and I get to make an informed decision. Between specialties not so well or so much.
How are you combining and/or compiling all these answers?
Jean
Hi @Jldela, I'm sorry I missed your comment earlier. The questions are being asked to help MSAA understand more about your experiences as someone with MS and also your understanding of shared decision making. The daily responses will be aggregated into a summary report, and all responses will be anonymised. Hope that helps 
Helen
I have never stayed with a doctor that has not taken time to listen to my concerns and SUGGEST solutions based how she understands and interprets what I say/feel. My current neuro is fantastic. She blocks out a whole hour for me. She’s actually appreciative that I take such an interest in the disease and my reluctance to pile on medications. Definitely makes me more comfortable in the relationship. I do get the final say so as Royce puts it though.
The short answer is the doctor doesn't tell you what to do, they go over all the options and you decide together
In the beginning, I deferred to my doctor's and simply did what I was told, medication wise. I currently have the best doctor that works with me in being more proactive/aggressive in my care. And my hubby is involved every step of the way!
I should have known the term. During my stint with cancer one of my oncologist took over the role versus a case manager or social worker.
I don't see her as frequently but she still carries on the role. I seen her for the first time in a year and since I no longer have cancer she caught up on my MS and ran through some ideas to try to cut down the frequency of infections. Due to the use of Ocrevus.
Not only did she share her thoughts and ideas with my Neurologist but with my primary, ENT and radiation oncologist.
I mostly am comfortable with the advice and shared decisions with all my practitioners
This is exactly the way I understand SDM.
What it means to me is that me and my doctor (team) have a shared responsibility in making the best decisions forward for my care based on we know at the time of the decision.
While easily said, it can become complicated when all information used in the process is not available to parties at the same time and same level of details. Also if doctor or patients don't speak enough, there can be a lot of incorrect assumptions made.
For really big decision, such as which MS treatment to take, it might be useful to actually write down the assumptions made when making the decisions so that every body is on hte same page when looking back at it.
My neurologist and PCP work together with my healthcare. They both are open to my suggestions for my care and we discuss the pros and cons. When the doctor wants to make a change we discuss it and I research it further before I make the decision to change or stay as is. I have never done what any doctor wanted me to do without talking it over and researching if needed.
To be honest, this is the way my neurologist has always encouraged our decisions to be made. She has been supportive since day one of me learning as much as I could independently of her so that I could be an active participant in my care. It has gotten to the point that my family doctor queries me when faced with another MS patient who has an unusual problem. (Often, I am easier to contact than another doctor.) I also share new information and literature when I receive it, again at my neuro's encouragement. In this way, she and I help to educate others about the unpredictability of our shared disease.
Same definition and I have been fortunate to have doctors who tell me all my options with the pros and cons of each and then allows me to decide what would work best for me. For example, at initial diagnosis I was JCV positive so decided not to get the drugs that can cause PML and opted for Gilenya since it was a pill and easy to take. I accepted the risk of eye problems and went to an opthamologist every 6 months for evaluation. When I relapsed 6 months in I considered Lemtrada but insurance wouldn't cover so decided to go with a drug with a long track record, Rebif. A year later when it was time to find a new one I decided to go on an Ocrevus trial. My doctor was supportive of all these decisions.
No, the definition as provided by Helen Hu does not change my own understanding of SDM (shared decision making) that I have had since the 1970s and 1980s, but I do wonder why it has taken so very, very long for it to become a human medical oriented discussion point. Just as most of the responders to this question have said, I, too, bring scientifically validated information to my doctor(s) which they tend to ignore and certainly never mention again. If I can bring a synopsis of anything I find in PubMed, etc., my current neurologist may read it--I think--though his "talk" doesn't really reflect new knowledge. It is probably once again a case of "This old woman cannot possibly know what she is talking about. Why am I wasting my time?".
Again I do want to emphasis my current VA PCP used SDM even though I think she is not aware of what she is doing. She may be fully aware...it is hard to determine as she doesn't have "down time" to examine her techniques and discuss it with me.
I wonder if we can create a movement of self examination by medical providers to encourage SDM for them and us? Of course it will mean a slightly longer than 15 minutes time with the MD.
By the way, I find the women MDs to be much more apt to use interrogatory techniques.
It is defined pretty much the way I thought it was. I don't do any of that. My doctor calls the shots but I know if I felt differently about something I would speak up. My family does not participate.
Does not change my personal concept or understanding of shared decision making. I suppose that my personal part of that decision includes family and finances, however that can be all inclusive in my part of the shared decision making
I have a great team of supportive doctors and family
I have always used participate in SDM and hope I will always have my mental capacity to continue doing so
I do use the various clinicians' information to make my final decisions, but, "Shared decision-making" seems to be the patient making the final decision alone but having input only from the various individual clinicians. This may be what "Shared decision-making" means.
The patient would not have a "Teamwork" approach with the various clinicians for it to be a decision based on an overall consensus from the various clinicians. I would think that it would be impossible to get the various clinicians to spend the time to form a "Team" for this form of "Shared" decision making.
