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Episode 467: Making Shared Decision-Making Work with Dr. Aliza Ben-Zacharia and Linda Lachman
00:33:33
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- [00:01]
A
I'm john strum and this is real talk, mississippi. It's August 11th and we have a lot to talk about. If you Google the term shared decision making, you'll find it defined as a collaborative process where patients and clinicians work together to select tests, treatments and care plans based on clinical evidence and the patient's personal values and goals. It relies on two main the clinician who provides medical expertise while explaining risks and benefits, and the patient who shares their lifestyle preferences, values and unique needs. But for some people living with ms, appointments with their neurologist are actually quite different because more than a few doctors still cling to an outdated model of healthcare delivery and patient care that puts the doctor on some sort of a pedestal, prescribing medications and issuing treatment plans as if they're edicts arriving with an accompanying lightning bolt from Mount Olympus. With access to information just a mouse click away and Dr. Chatgpt answering more than 40,000 healthcare related questions a day, people expect more more details, more engagement, and more two way communication from healthcare providers. You know, it seems logical that people are more likely to adhere to a treatment plan that they've helped to create. And patients who do participate and share decision making come away with this great feeling of empowerment as they become an active participant in their treatment instead of a passive receiver of that treatment. But shared decision making isn't an automatic happy pill. It takes work, it takes discipline, and it takes a clear understanding of both the patient's and the clinician's roles. This week, Dr. Eliza Ben Zachariah and Linda Lackman are joining me to share how shared decision making has worked for them over the course of their longtime relationship. Dr. Ben Zachariah is a nurse practitioner specializing in Ms. Care in New York City, and Linda has lived with Ms. Since being diagnosed in 2000. In a moment, we'll meet my guests, Dr. Elisa Ben Zachariah and Linda Lackman. Shared decision making occurs when a patient and their healthcare provider work together to make choices about care based on medical facts and the things that matter most to the patient. In shared decision making, the patient is no longer a passive receiver of treatment. Instead, they become an active participant in their treatment. And that can make all the difference when it comes to adhering to that treatment plan and gaining a sense of empowerment when it comes to determining how you're going to MANAGE Living with Ms. Joining me today are Dr. Eliza Ben Zachariah and Linda Lackman. Dr. Ben Zachariah is a nurse practitioner specializing in Ms. Care in New York City, where she's also A full time faculty member at Hunter College, Linda Lackman was the founder and president of Delphi Associates, a strategic marketing and market research firm. Linda's lived with Ms. Since 2005. And Dr. Ben Zachariah has been Linda's Ms. Healthcare provider for many years. Dr. Ben Zachariah, Linda, welcome to the podcast.
- [03:45]
B
Thank you, thank you.
- [03:47]
A
My first question is for both of you. You two have worked together for many years, so take us back to the early days of your clinical relationship. How did you first establish the baseline of trust needed for true shared decision making? Dr. Ben Zechariah, why don't we start with you?
- [04:06]
B
You're taking me so many years ago, I think it was probably immediately after Linda was diagnosed, maybe early 2000, 2006. I think perhaps as a nurse practitioner, I think perhaps my perspective is a bit different and I think and working together with a well known team and a great team that I've learned so much from. I think getting to know patients, getting to know their family, listening to patients, having of course my spiel too as explaining the disease, the Ms. As it was very new to Linda. Thinking about what is ms, what to perhaps expect from the disease, what is a relapse of ms? Back then we dealt with many relapses because we didn't have as effective medication as we have now. So I think building that relationship, I've met Linda's husband, I haven't met Linda San, but I know so much about Douglas that I think it becomes almost like family. But I'm still the clinician, I'm still the person that guide the conversation, I'm still the person that explain about Ms. I am the expert. But I think Linda had a lot to say. Number one, from her point of view, what does Ms. Mean to her? What are the symptoms mean to her? The sensory symptoms, the annoying right leg issues. So I think building that relationship, listening to each other, me as a, again as an expert in the field of ms, thinking about what is the best medication for Linda, working with her, thinking about the side effects, how to manage the side effects. And back then of course Linda was on an injectable, on one of the platform medication and I think troubleshooting the side effect, thinking about how to make life better, how to make quality of life good for people that know the Ms. Was, did not really have a cue and it's a chronic illness and how can we, can we overcome all different obstacle. So I think based on these relationship, each one of us, I guess Linda earned, we earned trust. We had some very Good trusting relationship. And I think that's what perhaps make Linda stay in our practice and then join me in my independent private practice in New York City. So I think I can say all this, all different discussions about other issues, too, about life, about New York City, about perhaps some politics, I think. But then again, going always back to the main thing. How can we make the life of any patients better dealing with ms, which is a chronic illness?
- [07:08]
A
Linda, what about you? How did you initially establish that baseline of trust that's needed for shared decision making?
- [07:15]
C
Actually, not knowing I had the disease initially, when I was diagnosed, I went to a number of different places within the city, and at that time, there weren't many. So I was deciding based upon the doctors I met, what facilities were available, what they told me, basically, at which time I decided on Eliza, Ben Zakaria and Dr. Lublin, who were at Mount Sinai in New York, which was one of the premier Ms. Centers at the time. And we took it from there is basically what happened. So it wasn't as, maybe as hard a decision in that you didn't have that many to decide from 20 years ago.
- [08:07]
A
Linda, let me ask you. And maybe we should step back one step, and instead of diving right in as we have, let me ask you, how do you define shared decision making, and what did Dr. Ben Zachariah do early on that signaled to you that your voice would be welcome in determining your care?
- [08:29]
C
Okay. I think shared decision making in general means exchanging views, info, questions, et cetera, as a patient and as a provider. So it's the fact that the provider does not just talk and give you information, but you are part of the process, which up until, I think, very recently was not always done very often. And the fact that the center where Aliza was and where I initially started to get my care from was that way, made it very important to me. It was also a center, a center where there were doctors, there were nurses, there were help. In terms of nutritionists, there was a much larger approach to ms, not as one disease, but as a lifelong issue that you're going to have to make changes as life goes along, too.
- [09:32]
A
Dr. Ben Zachariah, as a nurse practitioner specializing in MS, you have deep clinical expertise. How do you mentally pivot during an appointment to ensure your specialized knowledge leaves room for Linda's expertise in her own body and lifestyle?
- [09:50]
B
I think that you learn it over time. I think in the beginning of my career, it wasn't probably intuitive because everyone learned the paternalistic approach. You know better. You are the expert in Ms. You probably ought to tell patients what to do, how to do it and et cetera, et cetera. So I think, but you learn over time that the best way is to allow patient voice and to be partner in the care because once it's something that they think it's appropriate and the right thing to do, the right choice for them, they're more likely to do it. So I think you incorporate it together in the visit and the follow up visit. Sometimes it may be challenging. However, I think you try to start the visit by listening to patients because they come to see you, any changes, what are your signs and symptoms and you try to say okay, let's perhaps do this and thinking about for example if it's fatigue, which Linda often mentioned in the visit. So we try to see how can we manage it differently with non pharmacological agents. That's something that's very important for Linda, for example. So I think, think you can do it in between. It's not that you leave room in the middle or in the end. It's a very good question, but I think you try to balance it out throughout the visit. You voice your things to say, okay, my expertise is that we ought to do this and this and that perhaps include some more exercise for the fatigue and build up some energy and then think about other things. So I think the main focus is to think about patient as partners throughout the visit and have some, and Linda just mentioned it, have exchange of opinion, say okay. And I think Linda respect the fact that I'm an expert in Ms. She comes to see me because she would like to hear what I have to say. Same as we have done when we work together with Dr. Lublin in the center. So I think patient commands to listen to us as experts, as you mentioned, but also would like to, to contribute to the discussion because they are fully partnered, they're fully active in that discussion. And I would say it's just, I don't know, I think it's, it's sometimes ought to say how it comes to, to be in, in action. It just you say something and then the patient says something. And Linda would say okay, I think I ought to do this and we can't. Sometimes you, you may compromise on certain things. He said perhaps maybe wait on this medication, you're on so many other meds, let's do something different. And I think Linda is always pro less medication rather than more. So I think it comes in between each moment of the visit. Now I think it's more intuitive to me that I think patients are My partners, they're equal, almost equal partner. Although again, I think we have the expertise and I think we have to guide patient very often in relation to the disease modifying treatment for Ms. Or symptom management of Ms. But I think always to think that patients are integral part of all the decision that we make together in the center, hopefully to get the best outcome.
- [13:17]
C
It's gone on for so many years that you know, you go to your doctor, your doctor knows what it is and your doctor gives you their opinion. And I think the fact of sharing in terms of decision making is relatively new. There have always been doctors, I guess, that felt that the patient had something to add. But there also have always been doctors who felt you came to me, I'm the doctor, I'll tell you what to do. And I don't react well to that. So if I was in that kind of situation, I think I would look for another doctor. And I think some people do. Especially since Emma is a lifelong disease. You're going to be doing this for a long time, so you should feel comfortable in the situation to say what your issues are, what kinds of things you're experiencing that are different or that have just arisen. You have to feel, as I said, comfortable with your physician or your pa, whichever way.
- [14:18]
A
Linda, because Ms. Symptoms can change and new disease modifying therapies emerge, you've likely faced some treatment choices since 2005. Has there ever been a specific treatment or lifestyle decision where you and Dr. Ben Zachariah didn't immediately see eye to eye? And if there has, how did it get resolved?
- [14:41]
C
Probably not. I think I started with giving myself injections three times a week. I initially was having a problem with three times a week. And we had a discussion with Dr. Ben Zachariah, Dr. Loveland, et cetera, that it was too much for me to also be able to live my life with that much kind of medicine going in me on a, on a weekly basis. And we resolved that issue and have resolved it over the years, but basically I was lucky. They did always listen to me, they did always take my problems as well as my feelings about the subject into consideration, which I think is highly unusual. I hope it isn't unusual with a lifelong disease.
- [15:40]
A
Dr. Ben Zachariah, I think you've actually started to answer my next question during our conversation. I'm curious, when you present treatment options to a patient who has lived with Ms. For over two decades, how do you frame the risks, the benefits and the evidence based data so that it's truly accessible and collaborative rather than simply prescriptive.
- [16:04]
B
I usually try to think about the disease modifying treatment as categories because I think we have so many medications today and it's exciting, although challenging. And I think we do have some biomarkers to fit patients into certain categories, but it's not so we're not very, very close to precision medicine, but I think we're getting there. We have some new markers that can perhaps help us make decisions and guide Pat. So when I presented the patient I usually presented as categories. I do start with saying that there are some highly effective medications and some medication have low effectiveness in Ms. I start with the big pictures and I try to see if patients are thinking about more the risks there are related to medications, disease modifying treatment or they are more thinking about the effectiveness, the efficacy as we talk in Ms. Language. So I try to see what patients really are going towards, what their views of disease modifying therapy and what their risk aversion or not aversion. So trying to really gauge patients. So first I start with the high efficacy, low efficacy concerns that these medications have. Trying to say the most, I guess concerning side effects. I don't think at a visit you need to present all the side effects in the world of every medications you will never find to finalize a visit if you'll do that. But so I do that as a first category. Then I go into the oral, the intravenous medications and then I speak about the injectable. The injectable I do separate between the platform that are available for many, many years and are fairly safe in Ms. And then I separate the anti CD20 casenta or ofatumumab. So I try to talk to people, to patients about the categories, the risk associated with the categories. I try not to overwhelm patients. I sometimes do another visit to talk about it, to allow patients to think about it unless there is an urgency of starting an immediate immediately disease modifying therapy. So I think it's important to give patients two pictures of what available out there, Some of the science and the evidence. I do speak briefly about the science and some of the studies that showed efficacy and I give some numbers percentage. I do say that some of these medications will not compare to each other. So it's hard to tell. Often I start in a general overview. But to say honestly, if I for example think a patient will benefit from high effectiveness of high efficacy drug like an intravenous medication, I will limit the discussion perhaps to two families or just to one and say this is my opinion. I think as an expert in Ms. You ought to go on high efficacy. And I try to explain this is related to the clinical presentations, your signs and symptoms that you came today to see me and the findings on your films on the mri. I can share with you the films if you'd like to see. I tell patients most patient would like to see the mri. I explain the lesions on the mri. So I will tell patient I think you really will benefit from this medications. And if you'd like to hear about some others. In New York City, patients to say honestly are very knowledgeable. They read sometimes they have misconception about the medication and the data, the scientific data of medication. So you need to just correct those misconceptions. But tell patients I think you ought to go on high efficacy drug. If you'd like, we can talk about the oral medications and other medications that perhaps are less effective than the drug that I mentioned. So I try to balance it out, I must say. But if someone comes in and have very active picture of ms, I will perhaps just talk about one medication or two medication as treatment and not do the whole spiel. It's depend also on the questions that patients patients have. I try to listen, I see what their goals in mind are. What is, what do you know? I asked them what do you know about the disease modifying therapy Any. Because some people come for a second opinion. So they knew they had Ms. Already. But if it's someone that's long have ms, they. They know so much about the different medication. They know about the risk, about. About the concerns related to many of the medication. But I try to. To give them a fair picture. I must say I try to do the best I can in the time of the visit to give them that picture of all the categories if necessary. If not necessary, as I mentioned, I do just one or two medication and hope the patient agree. If patient comes in mind that they wanted oral medications, then sometimes you have to go along with that because they will take that oral medication. Either it's once a day or twice a day or whatever the frequency is. But I try to give them true information not to overwhelm them, as I said. But you need to share true information. You need to guide patients. You need to teach them about the correct data about each medication and the concern and the risks. If there are risk for infection, patients must know that they need to know the most prevalent side effects or risks that are involved in every medication.
- [22:26]
A
So Linda, whether someone is living with Ms. Or not, a lot of life gets lived over 20 years. Your priorities and goals for your health in 2005 were probably a little different from what they might be today. Has the way you communicate with Dr. Ben Zachariah shifted as your personal goals, your life stages have evolved?
- [22:49]
C
Sure. Elisa was not my initial physician. She was part of a team with Dr. Lublin, who was the major head of that particular facility. So. But we've always had a close relationship in terms of what was going on in my life. I used to bring my husband with me. It became something where she was someone I just knew as a friend almost for a long time. And I trust what she says, she listens to what I say. And we've gone from there for many, many years. At this point, amazingly, yes. I think I ask about changes and things. Obviously, I have been taking injections for a lot of years, which is not my favorite way to take medicine. I would much rather take a pill. And we've had that discussion a number of times in terms of what the new medicines are, how they affect you, et cetera. Since I've been doing very well on the injections and I'm used to them, I do take them and it makes it easier for me. I don't have to figure out which pills work or which pills don't. And Elisa doesn't either. So I think, you know, it's a long term relationship that is honest, that provides information when necessary on both sides. You know, what's happening in my life versus what's out there that's new and different, that maybe I should consider. And it works. Thank goodness.
- [24:36]
A
Dr. Ben Zachariah, what advice do you have for other clinicians who want to implement shared decision making, but they may feel constrained by short appointment times or rigid institutional structures or culture?
- [24:51]
B
I think the same as we sometimes, very often do with medication, we try to tighten it up. We do gradual things always in life. And I think all clinicians can perhaps introduce just one moment of shared decision making, if I can call it that way, in their practice. So maybe they cannot ask patients too many questions the whole visit and do the full partnership things, as some of us do. But even if they incrementally increase the partnerships that they experience with patients, I think that will be a plus. Just. And again, one moment, just say to patient, what are your goals? What do you want to accomplish? And then patient can tell them and say, okay, I listened to you, I heard your goals, let's do this, this and this, and then we'll continue. Follow up in the next visit, when I see you next time, in three months, in six months, whatever the visit. So I Think when you do that, you show patients, number one, that you open to that partnership. Maybe perhaps you haven't done it throughout the whole visit, but I think it's okay. It's just to show patient. I ask you your goals. I know what you want, what you want to accomplish on the short term and the long term. And we can walk the walk of ms, the long journey of Ms. Again, we mention it's a chronic illness. So I think that's something that will be such a tremendous step, showing to patients that the clinician is willing to do that. And I realize that we have to be realistic. Sometimes we don't have too much time to do what we like to do and spend with patients and listen throughout the visit. But I think if you do just one moment of sharing and partnership, it will allow patients to know that in the future they'll see a lot more of shared decision making and partnerships. And listening to them, I think it's opened the door to more and more shared decision making in the future.
- [26:57]
A
Linda, for someone listening to our conversation who might feel intimidated to speak up or disagree with their healthcare provider, what practical advice would you give them to advocate for a shared partnership?
- [27:10]
C
I think initially I would try to see if you could discuss sharing information. You know, if this is what's important to you and they're not responding to your needs, you have to say, well, can we do this or can we do that? And obviously the end result is to look for a new provider if that is not going to happen. But that's hard, and it's difficult to find people who have the expertise and who really know what's going on in the field. You know, living in a large city, it's not as hard. This is a big country, and I'm sure in a lot of other places it is really difficult to do so. You need to have a discussion. You need to talk to your provider. You really do. And you have to decide what your needs are, what you really want from this, how you're feeling, how it's changing, how the meds are helping you or not helping you. You know, you have to have a total discussion with someone and leave the door open that in case something happens in between my appointment now and my appointment three months from now, this. Can I call you? Can I make sure you're going to get back to me? You know, I think you alleviate the emergency of the situation if you are able to have the knowledge that you can contact your provider.
- [28:30]
A
I started our conversation with a question for both of you, and I'm going to end it the same way. If you could each boil down the secret to a successful multi year clinician patient partnership into a single phrase or principle, what would it be? Linda, let's start with you.
- [28:49]
C
I think know your patient and know your doctor. What is the, what are the issues that are involved as a patient for you and does your doctor understand that and if not, talk to them. I mean there's a whole issue in terms of people discussing things which they don't do. So you know, that's part of being a patient too, to have the ability to talk to someone, to get, to get the answers you need and if you don't get them, look for another physician quickly.
- [29:24]
A
Dr. Ben Zachariah, same question.
- [29:27]
B
I think I would say concepts of trusting relationship and respectful relationship. I think we always have to remember that yes we are the clinician, the patients coming for our advice. However, if we build these relationship upon trust as I mentioned and respect you continue that long time clinician patient relationship. Perhaps more than that. I think there is always diverse of friendship. You get to know patients over 20 years and I think always thinking about asking patients about the goal, preferences, values and sharing the decision because I think we both want the same outcomes. What we as clinicians want or I as a clinician like to have the best outcome for my patients that they'll do well with chronic disease like Ms. And patients want the same thing. They want quality of life. So I think we just have to always meet in that middle, overcome any conflicts or obstacles that we may have but continue to always listen to each other and respect each other.
- [30:51]
C
I think patients also and NMS have a different relationship with the provider than you typically have with a provider because it's not a one shot deal. This is an ongoing disease that's going to affect you for the rest of your life and you have to feel comfortable in the relationship with your provider and trusting that they are going to look out for you too and you know, be knowledgeable too in your own right. But there's a difference in a long term disease and a provider and just a regular, I mean I have a sore throat, I'm going to the doctor. You know, it's a different relationship and it's built over years and I think it's very important to maintain it especially with a disease like Ms. Well, Dr.
- [31:43]
A
Liza Ben Zachariah and Linda Lackman, I want to thank you both for moving shared decision making out of the textbook and demonstrating how it can actually function in the real world. Ann, thanks so much for talking with me today.
- [31:56]
C
Thank you.
- [31:57]
B
Thank you.
- [31:58]
A
That's going to wrap up this episode of Real Talk Ms. RealTalk Ms. Is powered by the National Ms. Society and you can share this episode of the podcast by letting your friends or family members know that all they have to do is point their web browser@realtalkms.com 467. You'll find that link in today's show notes so you can easily copy and paste it right into an email or a text. Imagine your significant other or spouse has been diagnosed with Ms. Shortly after you've been diagnosed with stage 4 colon cancer, and instantly the roles of patient and care partner get rewritten for both of you. Well, that's exactly what happened to Kathleen and Rick Silva. Kathleen Silva joins me next week to walk us through how against all odds, she and Rick survived and thrived. It's a conversation you won't want to miss. I'm John Strum. Thanks for listening. Stay safe and make healthy choices.
- [33:20]
B
Sam.