This concept of Shared Decision Making is a relatively new one for me and so, as usual, I want to start with a definition. This one is a good general definition from a handout from www.healthit.gov:
Shared decision making is a key component of patient- centered health care. It is a process in which clinicians and patients work together to make decisions and select tests, treatments and care plans based on clinical evidence that balances risks and expected outcomes with patient preferences and values.
https://www.healthit.gov/sites/default/files/nlc_shared_decision_making_fact_sheet.pdf
If you are left a little mystified by how shared decision making is actually accomplished, then this article’s abstract helps a little more:
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.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3445676/
Why has this concept been on my mind? Well, it all started with social media …
I’m still learning all the different social media platforms and each definitely has its pros and cons. On Twitter, I do find myself getting into more pointed discussions/disagreements and I see that happens with others too. And yet, I appreciate all of the people willing to enter into discussions, even if the exchanges get a little heated or intense at times.
Yes, I am typically intense.
Not sure anyone reading this is at all surprised by that statement if you’ve read my posts for any amount of time.
And so it was the other day on Twitter that I got into a discussion about this idea of “Shared Decision Making” as I was also helping several very newly diagnosed ladies adjusting to huge life changes as a result of Stage IV Metastatic Breast Cancer. One young woman is also treated by my medical oncologist and was struggling with some issues with communication and a new diagnosis in the midst of COVID restrictions. I’ve been coaching her on how to best communicate with our shared oncologist, since I have a few years of working with her under my belt.
The point of the thread on Twitter started with a question about the role of empathy in the context of breast surgery decision making and quickly morphed into this idea of shared decision making. It was a doctor who posited that oncologists should display empathy and also enter into shared decision making with the patients, suggesting that empathy was required in order to have shared decision making. I chimed in, because I often do, suggesting that empathy isn’t actually what I look for from an oncologist, that information and good communication of information is key. Needless to say, this wasn’t received that wall.
Bottom line, I take issue with this idea of shared decision making because language is important.
Yes, doctors have much more information and training than anyone who hasn’t been to medical school and hasn’t had experience in the practice of medicine; at the same time, unless someone has been deemed legally incompetent to make medical decisions, no doctor has the ability to make decisions on behalf of a patient. There is no shared decision making in actual fact because doctors either recommend or make decisions, there isn’t anything in between.
Let me say this again: Doctors and other medical professionals recommend and advise from their position of information and training and patients make decisions.
Let’s go back to my new friend who I was coaching/mentoring. Our shared medical oncologist gives information, helps with pros and cons, usually makes some recommendations, but sits back to allow the patient to make the decisions. This has worked really well for my doctor-patient relationship since I do my own research and look to her for information/guidance before making a decision as well as to ensure that I haven’t missed anything. My new friend was waiting for our shared oncologist to tell her what to do and was frustrated that our shared medical oncologist kept giving her options and asking her, the patient, for the decision.
I’m fully aware that this is a triggering issue for me since so much of my autonomy as a human being is attacked by the medical system and I’ve written quite a bit about that. Is this a real issue? Is this label an attack on patient decision making as it seems to me?
No Half Measures 
The word “shared” is what throws me off. In my view the doctor is NOT the decision maker (unless someone is on the operating table or in a trauma setting where there is no option to ask for patient or family input). I agree that the doctor should give all the options, the pros and the cons, and then the patient decides. To me the empathy comes in with also helping the patient grasp the emotional or psychological impact of each option, based on the doctor’s experience with other patients. For example, my husband had a detached retina. (Now I realize this is much different from treatment for a terminal condition…) He had two options – surgery to reattach, or a slower process of injecting a gas bubble that would expand and “push” the retina back in place. Option 1 was quick but risky (anesthesia, invasive procedure, possibly some impaired vision, etc). Option 2 would require that he remain lying down on his side for 5 days, but the outcome is typically a return to sharper vision and with less risk. The doctor explained that option 2 would take patience and complete compliance. If my husband did not think he could comply (due to the demands of his schedule or his demeanor) then option 1 was probably better. My husband is a patient person and has flexibility at work so he chose option 2.
Another example was when he broke his wrist. He had two options – surgery followed by a brace for a week OR a cast for 6 weeks. And if the casting didn’t work then surgery would be necessary. Joe asked the doctor which he would choose for himself. The doctor said surgery because he’s not a patient person and would just want to get it over with. Again, surgery has risks that a cast does not. Being the patient person he is, Joe chose the cast.
Over the years I have heard my husband ask the doctor “what would you do if this was your wife, child, parent?” This is a way for Joe to gain a personal perspective (empathy?) to consider in the decision. Sorry for all the words, I know I really have no concept of the types of decisions you are having to make…❤️❤️❤️
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I appreciate your perspective!! The “shared” part is what gets me too. I think the doctors did exactly right in giving you and your husband the different options and speaking from their expertise and experience. The examples you gave are perfect! Always appreciate your thoughtfulness. ❤️
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It’s definitely better if the doctor lays down all the options with pros and cons and cost, and gives time to the patient and their family to contemplate and arrive at a decision. Knowing that the doctor is patient and trusts your judgement rather pushing his own interest/opinion Down your throat is definitely helpful for a long relationship with the doctor in case of cancer treatment.
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Yes, this is all so true!! Our medical system often traps the doctors in a space where they don’t have the time to do what is needed to allow this sort of relationship to flourish. And yet, that’s what is needed so badly. Thank you so much for reading and your thoughtful response!
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In managing my mental illness, I expect the decisions to be mine and the process of arriving at those decisions to be a collaborative discussion among equals. I’m coming into it knowing my shit, and I have no patience for doctors trying to pull the whole hierarchy thing.
In terms of empathy, I think some degree of empathy is required for doctors to be willing to make that mindset shift and move beyond the idea of doctor knows best.
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“Collaborative discussion among equals” — YES!!!! This is what I want as well. Thank you for your thoughtful response. ❤️
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I like the idea of shared decision making, and I like the more detailed explanation you provided: I’m a fan of lists. Unfortunately for me, I find that patriarchal attitudes often infiltrate. My psychiatrist is awesome, ditto my counsellor. Medical doctors, however, mostly men, I find assumptive, arrogant, and condescending.
I may show up a little triggered – like you, I have too much history of my autonomy being questioned – but I don’t think my analysis of the way may doctors behave is inaccurate,
despite that.
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Exactly this and why I think the language we use to describe the process has to ensure that out power and autonomy is secured. I find myself much more comfortable with female doctors generally because I don’t feel the same power dynamic. It’s all in addition to navigating the complicated medical care from the beginning. Thank you for reading and got your thoughtful response. ❤️
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Hi Abigail,
For me, it all comes down to semantics. I see it as the physician providing expertise, knowledge, options and all that. Then, the patient decides based on her knowledge, goals, etc. To me, that is shared decision making. Because two parties are involved and patients can’t make informed decision w/o that sharing.
I can see how you view this differently though because for sure, the patient ultimately decides. So, the decision itself really isn’t shared. What goes into it is. Perhaps that’s the distinction. Again, semantics. I appreciate the discussion.
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Appreciate your perspective!! My husband accuses me of being too picky when it comes to these things, I just worry about the message the actual words convey. Especially for those need to navigating this strange world of needing care from a complicated system. ❤️
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I definitely want to make my own decisions AND sometimes I still want to know what the oncologist would do if she were in my shoes, or it were her mom or a daughter. Otherwise I feel too alone. It is so challenging to know if a decision made is truly the best decision, especially when that decision is made when living with MBC.
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SOOOOO challenging!! Yes, I definitely see the give and take in the relationship with my oncologist, based on a large amount of trust we’ve built up over the years. She sees how I am thoughtful and careful in my decision making and how my values are important to protect. I think I’m more triggered by the doctors who won’t talk the decision through with me or assume that I don’t want each and every detail. Such a difficult balance/harmony to find! Thank you for reading and for your thoughtful comment. ❤️
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Doctors don’t live with us. They’re not in our bodies 24/7 feeling what we do physically or emotionally. They don’t sleep with us. They aren’t around to comfort us when we break down or share in our joys, either. Do we want someone who spends maybe an hour a month on our cases to be the decider of what’s best for us then? And I’ve fired two oncologists for not listening to me and for treating my body without discussing it with me. I’m getting ready to fire another one – first because I do not feel like I’m being taken into account as an exceptional responder and my questions about the diabetes that’s not fully controlled after two months are being addressed. I’m on 1000 mg of metformin a day but my sugar is still high and my kidneys are taking a beating. I’ll wait until my first scan with her to see what she discusses with me before she goes on a months vacation. I’m reconsidering going back to Stanford where I was engaged in my own treatment options and heard. It’s not so much shared decisions. It’s patient centric care I’m concerned with, and I believe it’s kept me alive now in my 7th year.
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I totally agree!! Do you have an endocrinologist on your team? The hyperglycemia caused by Piqray (I’ve been on it since August of 2019) can be a struggle to control but sometimes the help of an endocrinologist is key. I, for example, couldn’t tolerate metformin so I’m on Jardiance and that has done the trick. Also, just FYI, Piqray causes hyperglycemia, not diabetes since the hyperglycemia reverses once you are off piqray. Thank God since diabetes isn’t something I want to deal with long term either!
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Reblogged this on By the Mighty Mumford and commented:
A LOVING COUPLE OR FAMILT SHOULD!
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One of my best experiences with “shared” decision making was with my mom’s nephrologist. She had been placed in a nursing home temporarily because she had a heart attack. She hated it, and they treated her badly, but the doctor there became her “primary physician,” and would not let her go back to her assisted living home. I was so frustrated, so I talked to her nephrologist.
He said, “Leave it to me, I’ll take care of this.”
Long story short, after her next dialysis treatment her driver took her to her assisted living home. I hired a care giver to check on her several times daily. The driver and I emptied her room at the nursing home, and she was out. Someone tried to stop us, and we just shrugged. She was already out of there. I left it to the two doctors to duke it out.
The point was that I couldn’t fight with the “primary physician” because he wouldn’t listen to the patient’s desires. The nephrologist in essence became the over-riding primary care physician. He did that in so many instances that I could never thank him enough. That was empathy!
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Wow, amazing that it took that much intervention from you to get the right thing done. Good that you had the nephrologist’s backing!!
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He was amazing. It was very stressful but he was such an incredible doctor.
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Those incredible doctors keep me looking for more!
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Yes! Me too. I love my new oncologist here. He has become my primary care physician since we moved. and he doesn’t seem to mind taking that on. For the most part he has been making referrals for me. When you are new in an area, getting the right care is a difficult task. 🙂
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I hear you, we learn so much by hearing the experiences of others.
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True that.
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I feel like my voice is heard and acknowledged from most of my current team of docs. But my sense is that many people don’t ask for their docs input, or do any research, and when things don’t work for them, they do what they want or scream at the docs. Where’s the shared decision making there? I’ve been trying to find a med for AFIB that let’s me breathe and doesnt swell up my ankles. I asked via email if this swelling is normal and the doc wrote back saying that the first drug didn’t work (per me) and I have to take something! I wasn’t trying to be non compliant! I just wanted to know if it was normal to have swollen ankles! I think the good doc is tired of noncompliance and read my emails thinking that’s what I am. So much for a shared decision…
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