Thank you so much for all your thoughtful contributions yesterday!
Today's question is about the concept of ‘Shared Decision Making’. Have you heard of this term and if so, what do you understand about it?
- Where did you hear about this term?
- If you haven't heard of it, what do you take from it?
Shared decision making means that all persons involved in the outcomes of the decision should have input on that decision although the ultimate choice is up to the person it impacts the most
Hi i havent heard of it?
I understand these words, but am puzzled by the question. As I understand the meaning of shared decision making, more than one individual can be involved in making a decision. I listen to advice given by my doctors and ask questions. There are times when I accept this advice for medications, tests, etc. But when it is clear that a clinician didn't listen carefully to what I attempted to express, or I am told there is nothing available for MS in my age demographic, this is hardly shared decision making when no other suggestions are offered. It seems to me that medical professionals of my experience see themselves as more knowledgeable than someone seeking help; this puts them in a dominant position and impedes the formation of shared decision making. The only doctors with whom I have experienced shared decision making have been surgeons. Most have listened carefully, provided clear explanations, and offered options. Within a family, shared decision making is often a norm; between doctor and patient, it seems a rare thing.
Well put. 🦋
As I read other responses, I realize how much I have missed as well as the potential for benefits. For example: wouldn't it be wonderful if my surgeon could talk to my neurologist could talk to my internist could talk to the dermatologist. But they don't despite the fact that all except the surgeon are part of a large university system. When I remind them they will look at the electronic medical record to see what another clinician entered but there is certainly not a collaborative team approach to my health care. Wouldn't it be wonderful IF???
I don't count on it.
I was prescribed a blood thinner after a procedure and they apparently never bothered to look at my chart. It could have caused some major problems with my eyes. I blew a gasket!
I value my eyesight and told them so, which they then scrambled to make everything right.
It is my habit to check up on and question every single thing a doctor tells me and believe me, I am glad I do.
Shared decision making means exactly that. Making a decision, sharing that process with another/others. Each person in the process will have his/her own agenda so the final decision has to be made by the person most affected by it.
Shares decision making is the only way to make a decision. MS has so many different factors you need different opinions to help you make the best for you
For me shared decision making means communicating with my entire care team about the issues, concerns and ways I would like to handle my MS. I’ve heard of this at many seminars and during talks with other patients and my doctors always remind me it’s important to make decisions together.
Well said, I agree. 👍👍
I believe I heard of the term but not positive.
What I take from it is that a significant other is involved and aware of your current situation and future situations that you may need help with.
Whether it be physical issues or financial matters.
Depression is very common symptom associated with this disease and you need that significant other to provide emotional support.
Means sharing decisions about your health with your care giver, family and health care team. But ultimately the final decision is the patient. It does not mean giving up your right to choose what you want. It is a helpful thing to have other opinions.
I agree with you!
I have heard of this term. My husband and doctor are my shared decision “helpers”. Ultimately it’s my final decision to make after listening to their reasonings.
Thats when doctors, caregivers and person with MS bond together to troubleshoot and solve problems.
HelenHU I have heard of this term. My medical team always involves me in any decision. It is me that will benefit about it the most, after all. I try to research as much as possible, so that I can understand everything about any care.
To me it reflects how important a team approach is, open and sharing many solutions that reflect our symptoms, holistic approach, and how important it is to listen. We all have input to find solutions. Many pharmacy's want to promote their products but do not include what exactly it helps and you are led to only see part of the picture. Many views are important treating the whole person. Thanks
supposedly my internist (PCP) is "head of the team." I don't see him about my MS. If he wants to see what is going on he may be able to read notes from my MS specialist online record. But whether or not he does, I have no idea. My MS doctor is the one with whom I discuss my situation. So if there is a team or some kind of shared communication, I wouldn't know unless my neurologist says something to me. Some docs I see may send a report to my PCP. As I wrote elsewhere, I think the system is such that doctors are too busy and don't communicate with each other. If there really were a team, then all a patient's doctors would meet regularly to discuss a patients progress or overall situation and I'd be highly surprised it that happens.
I think this phrase is used now to describe what we used to call the team approach to healthcare. All health care departments a patient needs are represented, along with family, to help the patient make decisions about the options open to them, rather than just the one person, usually the doctor, telling the patient what he or she must do.
Shared decision making is my primary goal when interacting with any MD. It is not shared by many physicians though it seems more MDs now do go to the effort than have in the past.
Shared decision making is this as far as I can tell: Given that all decisions (no matter what) are based on risk/reward results, it is the net result of patients/ physicians knowing the best information available which they then use to decide, together, an action or of actions to take for the patient's benefit.
I think I first identified it when I was a veterinarian from the 70s to late 80's and worked with small animals and cattle. Veterinary patients cannot make decisions, per se, but their owners can. Veterinarians assess the capability of the animal's owner to understand the medical problem and the consequences of treatments. It is up to the veterinarian to speak at whatever level the owner has knowledge...very different when talking with an MD or PhD owner vs a person who has not completed high school but not necessarily so in all cases. And probably even more important, understanding is dependent on the veterinarian's capacity to adequately describe the situation, the consequences of whatever decision made by the DVM and patient accepted by both. The idea all this can be done in a 15-minute patient discussion is absurd.
Why I know this works: After I earned my DVM and PhD, frustrated with my inability to actually "help"people, I then earned my Masters in Nursing and became a certified Nurse Practitioner. I worked with an American Indian tribe first, then the Coast Guard and then had my own eleemosynary philanthropic clinic for the homeless and underserved in the Oregon Coast.
Based on my experience as a veterinarian and mostly unhappy experiences with MDs, all, literally ALL, decisions between the patient and me were mutually derived. If the patient wanted someone else present, I agreed. If they didn't agree with anything I suggested or I couldn't agree with them, (I can't remember a single one who didn't agree) they had the option of finding another caregiver with no onus.
By the end of 2.5 years I had 5000 patient records. Many were transients. Many had not seen a doctor in all of their adult life and in every case shared decision making was maintained. For example it enabled me to do women's health exams in their homes which they did not want to leave with some equipment I had ïnvented with an eye to increase their ease and comfort. It enabled me to treat men with very difficult skin infections and to use unique methods to do so. All this was possible because we talked about the pros and cons and that included how they actually lived in their homes and what their concepts of how they should function as humans in this world were. I wanted to know what problems, hurdles they had to surmount to make the treatment successful.
I have never "heard" of "shared decision making"per se. I have actually only been involved in its use with one MD, a new MD at that, who is in the Intern/Resident program at the VAMC in Pittsburgh. She will be leaving at the end of June, What a huge loss to the Women's Health Program. An aside: I think the VA system is but a harbinger of what is to come in terms of ""universal health care"and shared decision making will continue to be a non sequitur in in general medicine or VA medical parlance.
I dont think I've ever heard that phrase, but I would imagine it means 2 or more people come up with the decision together.
I understand this term to mean having someone else help you make decisions. I actually have my youngest son sit in with me at all my appointments. He helps me remember things. I do the same for him. If he can't go, we both have a back up person, his fiancee.
Haven't heard the term used but I would interpret this phrase to mean a decision making process made with healthcare providers, family etc. to determine the most positive outcome for the patient.
Shared decision making is a feature of family centered care (FCC) and patient centered care (PCC). It includes the parents of the patient if the patient is a young child, or the patient him/herself in the medical decision making process with the medical team. There is another use of this term, when a patient is no longer fully capable of making decisions about their life but does not quite require full guardianship there is a legally recognized form called "shared decision making". On this form the patient gives permission to identified others to share in decision making about their life but retains the final say.
Yes, heard of it. Regarding myself, I am the final decision maker, with yes, input from many.
I agree with goatgirl! I believe this term is not used much in the health care system. Ultimately it SHOULD ALWAYS be the person it affects final decision. I am blessed with medical professionals who are listening to me and helping me with decisions that affect me in a sincere compassionate way. Not all of my immediate family members let me make my own decisions but I am making decisions to have more control in my own decisions.
This is a very important question to be brought up in this forum and I thank YOU!
By having your own decision there is less chance also of being abused.
My prayers are with all of you.
Today's question is about the concept of ‘Shared Decision Making’. Have you heard of this term and if so, what do you understand about it?
- Where did you hear about this term?
I read about it online. I would say that it must be talking as a team. The patient, spouse if any or family and the doctor. My "team" consists of the doctor...
Shared decision making? For me that is when I receive information from my drs, and We decide together what is going to work best for me! Not someone else. My MS is my own.
Shared decision making involves my doctor, myself and my husband. My husband has been such a blessing to me, helping me daily without complaint. ❤️ Honestly, the final decision should always come from the one with MS.
My NP first introduced me to the term. She described herself as the quarterback and the specialist, etc., as team players. Ultimately, the final decisions are made between my Husband and myself.
If shared decision making is anybody other than myself having a final say on what I will or won't do with my health decisions, I want no part of it.
Shared decision making is between the doctor/neurologist and yourself, but at the end of the day, they should only advise because it is your body, you have to have the final say, 🦋 I heard about it on this forum.
I have never heard of it, but if I am 51% of any decision regarding my health, I would look at as an abdication of my responsibility to my health.
I think of shared decision making as meaning that someone else and you research the topic, procedure, or treatment and compile the information together and make an informed decision. The person who gets the treatment has the final say because it impacts them mostly. If it impacts someone else such as a caregiver or friend, they have a say, too. Shared decision making can be between the doctor and patient, spouse and patient, funding source and patient, etc.
All responses have something to take away & see how it could apply to you. In the end the decision is yours to make.
I think it means that all persons the decision would impact take part in the decision. My husband and I share in decision making.
I have not heard of it, but my guess is that a husband and wife, or a family along with their doctor discuss and make a decision together. I agree with the statement below that ultimately the person greatest effected with the decision has to make the final decision.
I have vaguely heard the term. It really doesn't mean all that much to me. It's kind of a generic term like "team approach" which also doesn't mean a lot to me. I communicate with my neurologist, and if she shares any pertinent information other doctors , I wouldn't know unless she tells me so. In general the way medicine is today, relying on computers more than Vis-à-vis communication, information may not be acturate or complete. My husband who is a physician sees this every day and he says even though the old records may have been hard to read, they were much better than the computer systems today and doctors used to talk to each other about cases more. Today everyone is too busy.
I haven’t heard of it but I would assume it means something to do with the patient having a say in their course of treatment along with their healthcare professionals and caregivers.
MSAA Online Focus Group: Day 2
Maybe this time the post will go to the Focus Group
I have heard of shared decision making. I have seen it work with a doctor but it doesn't seem to work across specialties. My neurologist isn't concerned about my blood pressure. My GP doesn't know that some vaccines aren't recommended for MS patients. I have to be the conduit for the information that the health record should carry. What if I forget?
Not something I've heard of
I’ve never heard this term before. I imagine it means doctors, family and the patient all involved in making the best and most informed decision.
I have heard of shared decision making from the MS community. I assume it means caregivers and patients make the decisions together. I have not experienced the concept.
Seems like the way it is now informally in my life. I like to think of this as ‘all of us is better than any of us individually ‘ not sure if it works well
Not sure
No, I haven't heard of it, but when my mother was living even though at the time an adult only child and her primary caregiver; her voice was important! The doctors involved also added their input. Every so years many, definitions get renamed. Dual Diagnosed to Co Co-Existing Disorders etc.
NeeC
I am a day behind in my replies. But I have not heard of shared decision making. I suppose it can mean any number of things. Health decisions shared between patient and doctor; between patient and family; between doctors, etc. I am interested to find out what it actually does mean!
Shared decision making is my MS doctor, my wife and I. My wife and I are the ones most affected by MS.
I haven't heard of the term but I think it means coming to a decision after discussion with at least two other people.
HelenHU I'm sorry I cannot answer this question. Mary
I understand shared decision making as having someone to share making decisions with. But us who don’t have someone to share with make them alone. I probably heard of the process here.
Donnie
Shared = various health-care professionals helping a patient make an informed decision about the patient's health decisions so that the patient can bring the various health-care professionals' input to the patient's main Doctor to enable a more complete conclusion about the patient's health decision.
