Thank you all again for your response about shared decision making (SDM) for the last couple of days.
Thinking about the definition again, what do you think are the main barriers for SDM to become more widespread, either for yourself or generally for everyone with MS?
- Consider factors such as HCPs, the information available to you, time, confidence etc.
- Do you think it requires many changes compared to the traditional way of making treatment decisions (i.e. doctors being the primary decision maker)?
Written by
HelenHU
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For me there are no barriers. For others it may be that they can't be bothered to do any research, or they don't trust their own interpretation of research. It may be that they feel pressurised into following the "experts" if their advice contradicts their own thinking. Some people aren't confident in their intellectual capacities to even undertake a shared decision making process; poorly educated, brought up to feel inferior to uniforms . . . . all sorts of factors.
I agree with that statement. I myself practice SDM. I i know of some who are afraid of making decision, yet do not do the research, just blindly follow doctor recommendations without doing any research. After the fact, I have heard them say things like - gee if I had known this or that I would have chosen another route. However they continue to not do their research and then blame their medical for poor results.
I think one of the main factors is trust. You have to trust your health care team to point you in the right directions without being too pushy. Also they need to be aware that we need choices to ease into a major health decision.
I think a good medical team will give you information, suggest you research on your your own, then let the medical team know what direction you want to go.
Of course there are exceptions in dire 911 emergencies, but even then you have a say in your treatment
Overall, I believe that SDM will occur as doctors become more accepting of the concept. I have no barriers. If a doctor does not respect my research and my questions, I find a new doctor.
Trust of the HCP. I had 2 Neurologist when 1st diagnosed. The first was the one who DXED me and the other was the supposed MS expert. The first hated I had 2 Neurologist, I ending up dropping the first as even though she DXED my MS she discounted any outside ideas and I felt she never listened as her staff would follow up with me after each appointment and say "Why are you (fill in the blank) and I'd answer, and they would say - You should have mentioned that" I would scream "I DID!"
1. It takes a doctor willing to do so. It takes longer to discuss options than it does to simply prescribe.
2. It takes a patient able to research, and commit. It's one thing to have a doctor to here's the options....but how much can a doctor really cover in a visit? I've often spent many, many hours, researching after being shown the right directions to start looking at. Example: Doc - I've been hearing about good results for XXX doing YYY. Doctors at ZZZ have been finding that ...., and I the Patient - off I go following up, doing research via the web,...via books..., So that next time, we can discuss the subject, get questions I can't figure out at least looked at by my doctor, and come up with a plan to try. If my plan doesn't work out, back to it again! Maybe.....
Though, that's me. When I'm told you have xxx, and our probable next step is yyy, I go off researching....and either agree to, or come up with another alternative, often involving diet changes, which have worked for me, many times.
Examples: Restless Legs. Been on, for many years, the drugs for RLS. They worked..., for a while. Tried others or alternating drugs. Started looking at and tried homeopathic solutions, such as the creams,...and studied what was in them. Also comments by others. Now I do (2) standard magnesium gel caps 2 hours before bed, and no more RLS! Take it too soon, still there. Too late, doesn't work. Take another form, even higher dose magnesium, helps, but does not work nearly as well. This was easy. Yes, I went the other route for years before deciding to research a solution. And I feel it is far safer than the drugs!
Run with the ideas from this site, and your doctor if you can, and be your own advocate. Put in the time and effort, and often it will help. If not, at least you can rest that you have tried all you can, but....never give up! Keep looking! Doctors have been trained typically in conventional medicine. Sometimes that's all it takes, but often, at a cost ($$$ and side effects). Would you be satisfied to live with high blood pressure meds your whole life, or make the necessary changes so you don't need them?
Health care providers should have conversations with patients respectfully, seeing patients as members of their families, employees, and other roles they have in their lives when recommending medications. Of course the #1 point of the conversations should be why they think is the best treatment for the course of the patients disease.
I've been seeing my doc (and the NPs) for 18 years of the 25 years since my diagnosis. I have been treated respectfully, discussed why they recommend certain meds and med changes. They also know the main issues that have encountered all these years. For that I am grateful. I have heard stories of patients who see docs that give them the names of meds and tell the patient to choose which one they want to take. I find that behavior to be beyond inappropriate. The docs are medical experts who should inform and guide patients along their own disease course. I would recommend finding another doctor who can help you, the patient, make decisions with the doctor's expertise.
In my 15 year journey to get a diagnosis I had my doctors tell me many things. I was beginning to question myself. I learned to keep a journal, go to every website,magazine, and book so when I went to the Dr. it was a two sided conversation. I review my journal write down my issues important ones first. One time I gave the Dr my list and told him to read it and to tell me what is important. My Dr appreciate this so no time is wasted. Also while doing this it has helped me to learn my body and how to coexist with MS.
You have to be able to TALK to your HCT. Let them know, this is about me! And I do know what's going on with Me! And I know a little bit more than you think I do!
Communication is key. Rapport is key.
Knowledge is key also. And humor!!! 😂
Together we can come up with a plan for me! Hopefully!
In my experience, I think the two main barriers to SDM are 1) limited number of HCPs (healthcare providers) with MS experience in certain geographic areas and 2) limited access to MS support services because of health insurance limitations.
Many MS patients are treated by HCPs (general neurologists or practitioners) who treat a limited number of MS patients - and have limited knowledge of the disease. It is difficult for many patients and their caregivers to communicate and establish enough trust with the HCPs in the fifteen minute appointment that may only occur every 6-12 months.
I doubt that shared decision making will occur in the years I have left unless I need palliative care or hospice. Perhaps because in those forms of care the patient will not survive, professionals can speak honestly and openly to one another, the patient and those who love the patient. Until the medical establishment undergoes a paradigm shift, SDM is not likely to become the standard of care. Those in training may be exposed to the concept of SDM but upon joining a practice most will be forced to conform to the culture in place which seems to place doctors at the top of a pyramid and patients at the base.
Perhaps my view as elder and female biases my opinion, but I do not find most medical doctors able to convey even the slightest interest in me, my health goals, or my values. They are most comfortable with an Alice in Wonderland approach of eat this, drink that...and if questioned many become distant and a few become slightly hostile. I try to stay informed by reading reputable sources, and live by a version of nothing to excess. I do not expect treatments to cure the MS that afflicts me. Treatments only fix the symptoms. As far as I am concerned, until I am treated with respect and a modicum of interest, I will keep my distance.
And one further thought: in many practices/situations, doctors are scheduled to see a patient every 30 minutes, this includes picking up the folder by the exam room, refreshing notes made last visit, seeing the patient, writing up notes afterward and so on. This approach leaves no time for thoughtful interaction.
In the nhs in the U.K., we are allowed 5 minutes, so there is no time for the doctor to get to know you. Here you are just a number that they get paid for. When I was younger, my doctor made house calls, he knew my name, he would ring my mum with treatment ideas. Now you have to be on your death bed before they make a house call. They get paid for every letter that they send out to you. The latest was could I make an appointment for a cervical smear? I had a full hysterectomy, they took my cervix. When I rang them to ask why, they said as I was 63 and the cut off date is 64, I was eligible for a smear. No one had read my notes and they told me I had better go in and have one done, just in case there were any cancer cells lurking. To which I replied, do the cancer cells not grow once you are 64, I did not get a reply.
I, too, remember doctors who made house calls on ordinary families. Now, wealthy people can contract with a concierge service to have a personal doctor.
I agree with all the posts above. I think there will probably always be a certain level of disconnect between some and patients and some doctors or other health care professionals due to a language and/or knowledge barrier of our condition. I do respect the fact that doctors have had years of study, but I also want them to respect the fact that I know my body and that I try to keep abreast of research in the area of MS, as well as the fact that it is my body. It's also difficult for the few doctors who may attain a big ego along with their degrees, making it more difficult for them to accept our wishes for second opinions or allow for disagreement with our choices. I hope that medical schools will incorporate this style of care in teaching future doctors.
Absolutely right on. Most of us do respect the years of training required to become a doctor; we respect as well the intellectual ability of medical professionals to gain so much knowledge and learning. But no one on earth knows my body in the same intimate way that I do. As you say so well, "I also want them to respect the fact that I know my body and that I try to keep abreast of research in the area of MS, as well as the fact that it is my body."
HelenHU Communication is key! I have been fortunate enough to have a fantastic neurologist that listens to me, and will refer me to other doctors in the network that I can see. In the network is key because all of the medical people in the network adds their notes to my file and they all have access to my files IF they are in the network. My PCP is not in the network yet so I communicate with her everything that is going on with me. She is in another network. I love my PCP, my neuro, my dentist, my eye doctor, and most of my specialists!
The abstract from J Gen Intern Med[2012 Oct 27(10), pp. 1361-1367.] "The principles of shared decision making are well documented but there is a lack of guidance about how to accomplish the approach in routine clinical practice. Our aim here is to translate existing conceptual descriptions into a three-step model that is practical, easy to remember, and can act as a guide to skill development. Achieving shared decision making depends on building a good relationship in the clinical encounter so that information is shared and patients are supported to deliberate and express their preferences and views during the decision making process. To accomplish these tasks, we propose a model of how to do shared decision making that is based on choice, option and decision talk. The model has three steps: a) introducing choice, b) describing options, often by integrating the use of patient decision support, and c) helping patients explore preferences and make decisions. This model rests on supporting a process of deliberation, and on understanding that decisions should be influenced by exploring and respecting “what matters most” to patients as individuals, and that this exploration in turn depends on them developing informed preferences."
I think there are many barriers and changes needed to be made with HCP.
They need better communication btw all your doctor's and their clinic system. But the HCP need to read a patient's medical record's each time they see them and explain all of this to the patient.
MS patients have a harder time gathering and cognitively taking in information when being spoken too. A MS patient can sometimes have problems explaining to their HCP what exactly they mean in talking with them in outcomes or understanding what's being said to them. MS patients not being understood when they are trying to explain what they mean in communicating with HCP.
Finding the right doctor you are comfortable with to speak freely and honestly.
I don't think if you are a newly diagnosed MS person you can absorb everything especially like me if you had a severe exasperation that lasted years even with treatment and DMTs.
Repeat visits closer together needed.
Not everyone has access to all information to help them deal with MS.
I believe this forum was a much needed informational personal relate to MS tool for us dealing with our never-ending always changing chronic disease. With all it's symptoms chronic pain and debilitating life situations.
falalalala, I agree with you but in the interest of maintaining a relationship with the one and only neurologist in a 10 to20 county area (or larger) it may behoove many to not be confrontational and appear rather meek and idolizing of the Godmd, certainly initially and maybe even finally. I cannot do that as I am often relating and discussing material and information the doctor has never heard of...continuing education may be helpful for them (we are always in that mode, right?) but with only about 3 million MS patients in the US, and millions more with Alzheimer's etc. I can understand they may feel the chances of getting a patient with MS is rare. So they by-pass it. Also I keep remembering all people cannot remember the finer points of all things, either.
I think SDM could be a protocol a patient could bring up upon first meeting the MD they will be seeing for the next good period of time. The explanation is not time consuming and if emails can be shared as information formats when not in a 15 minute appointment, it goes much better. That is my experience so far with the VA. We all share a portal where we can email each other securely. We do, too. It is fast and cost effective.
Sounds like that'd be wonderful but in my experience they didn't even bother to read my chart thoroughly,let alone contact any of the other doctors I go to for an exchange of information .
I could have suffered serious trouble in the form of blindness had I not checked on the med they wanted to give me.
I question everything they want to do.After all, it's my life!
I will not go to, let alone pay a doctor I can't get decent care or communication from. If I have problems with the way I am being treated, they'll know about it and I will find someone else.
I believe it would be beneficial when multiple disaplinaris are involved between multiple facilities.
When I have heard of the practice it called for a case manager be involved. I would only be comfortable using this with the case manager being a doctor.
In my opinion My Chart by Epic works just as well as what a case manager being involved.
I have a hard time with trust. I always have had trouble with letting others help me in decision making. I also, only let limited people know of my MS. My children, my sister, mom, employer and one friend who I wish I had never told. Their "understanding" of MS is limited and unfortunately he has know desire to educate himself. Therefore, I get a lot of comments of doubt and that this is all imagined. Bad decision on my part to trust this friend. My family is supportive and respect my need to walk through this myself at this point. I keep them informed, try to answer their questions but at the end of the day, they know I will let them know when I need their help to continue the journey. While I go to the Mellen Center/Cleveland, my confidence is still low. Diagnosis takes a long time. I was diagnosed in January and still my physician will not start and treatment. I take gabapentin and amitriptoline. My flairs are increasing in intensity and the only think my physician does is increase the gabapentin. I am sure he has a reason, however, that is not shared with me. I do better with full disclosure and that, seems as though will never happen. I do not feel I am at a stage to have my children or my sister help me with decision making. I take supplements, changed my diet, I spend a great deal of time researching what my options are, what I can do to help myself.
Follow your doctors advice to suit your comfort level. All in all, it is your decision to make. Stay informed and be strong 💪, after all, we are Warriors!
I think a good open relationship with the doctors is key. But even where that exists I struggle with being overwhelmed with having so many issues at once it’s hard to stay focused. And I’m not very good at writing things down or even prioritizing the problems and symptoms I’m experiencing. My wife has been going with me the last few years and that has been a help.
I think it requires some change on the doctors parts, depending on where/when they were trained. I find that md's who are research affiliated are more open to sdm. I also think that there is not enough time spent on appts to allow pts to make informed decisions. I mean how often does one have an appt and another in lets say a week to give their decision. It's usually on the spot!
I think it boils down to trusting the doctors and knowing your own body. We are ultimately responsible for our own health care. My doctors do practice SDM and encourage their patients to do research so they can fully understand the prescribed treatment. They are not intimidated by a knowledgeable patient as some doctors seem to be. My first neurologist had a very large ego. He would get offended when you questioned him. He once told me that I shouldn't believe what I read on the internet. He also wouldn't believe me when I told him about symptoms I was having such as diaphragm spasms. He told me that MS didn't affect breathing. He was supposed to be an MS specialist. I quit going to him after the 1st year and found the one I have now. I think one thing that would help is for doctors to schedule longer periods of time for patient visits. Most are just 15 minutes and they start rushing if it goes longer than that. There are times when more time is needed to get through all the questions the patient may have. My doctors schedule 30 minutes per patient. I have had doctors schedule every 15 minutes and if they run over they are behind and the waiting gets out of hand. My first neurologist was that way. There were times when the waiting time was 1-2 hours.
I think people have to change the way they think about their whole world. Too many people feel like victims and that they are not responsible for what happens to them. They are “ owed” something. I feel if people felt more responsible for themselves as a whole they would feel more empowered to be involved in their health decisions. As long as they rely on others they will be willing to follow whatever a Dr tells them to do without questioning it.
I think the main barrier is how much time the HCP has with each patient especially now that there are so many DMTs available. There is a lot of misinformation online so if the HCP doesn't have time to go over everything people can get false info when trying to research on their own.
Also some people don't feel comfortable asking HCPs questions or don't know what to ask. Some generations are just used to being told what to do not helping decide.
The biggest barriers that I see are with the doctors themselves. They need to encourage their patients to do ask questions, do research and take their time making decisions. My new neurologist is doing that and I like it.
I trust my neuro now, had one I would never go back to. He announced to me on 2nd visit,that "I don't do disablility papers" yikes .I was gone in a flash,I thought you are a neuro and work with all kinds of disabilities,yikes.I had never asked for disability papers,i was still working.....
I have no barriers. Our (my wife and I) visit with the neurologist starts with us asking questions. We write down a lot of items we wish to discuss and the Dr replies to each item. When the list is complete she does her talking. One of the two visits are taken up primarily by the recent MRI. I have the radiologists report before I go in for this visit.
I fell that many people are intimidated by a Dr because they feel the Dr is smarter than they are. In today’s world the internet helps level the field.
Confidence to discuss opposing health-professional views with your doctor so that all of the details can be addressed before the patient has to make the finial decision. The Doctor may not be used to this sort of questioning attitude and the time that may need to be taken (by the Doctor) to resolve any issues.
Research, remain optimistic, listen to doctor but trust new information. It is ongoing and what works for others may not for you and your design to heal. (Holistic, medications) thanks
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