RealTalk MS
RealTalk MS
Navigating multiple sclerosis is easier when you understand the science behind it. Join host Jon Strum each week as he translates complex MS research, treatment breakthroughs, and healthcare news into clear, accessible language. Whether you’re living with MS, caring for a loved one, or looking for answers, RealTalk MS connects you with top neuroscientists, advocates, and the information and insights that matter most to your MS journey.
Choose your favorite podcast player
Aug. 10, 2026

Episode 467: Making Shared Decision-Making Work with Dr. Aliza Ben-Zacharia and Linda Lachman

Episode 467: Making Shared Decision-Making Work with Dr. Aliza Ben-Zacharia and Linda Lachman
RealTalk MS
Episode 467: Making Shared Decision-Making Work with Dr. Aliza Ben-Zacharia and Linda Lachman

Key Takeaways

  • Shared decision-making is a collaborative process where patients and clinicians work together to select tests, treatments, and care plans based on clinical evidence and personal values.
  • Establishing mutual trust early in the doctor-patient relationship lays the essential groundwork for successful long-term management of multiple sclerosis.
  • Patients who actively participate in shared decision-making experience greater feelings of empowerment and are more likely to adhere to their treatment plans.
  • Effective communication requires clinicians to balance their medical expertise with the patient's lived experience, lifestyle preferences, and individual goals.
  • Even with limited appointment times, clinicians can incrementally incorporate shared decision-making by prioritizing patient goals and open dialogue during visits.

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.

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. Aliza Ben-Zacharia and Linda Lachman join me to share how shared decision-making has worked for them over the course of their longtime doctor-patient relationship, and how it can work for you.

Shared decision-making

We have a lot to talk about! Are you ready for RealTalk MS??!


This Week: We're taking a deep dive into shared decision-making :22

Dr. Aliza Ben-Zacharia and Linda Lachman discuss how they have made shared decision-making work, and what to do if it isn't working for you and your neurologist 2:39

Share this episode 32:05

Next week 32:25


SHARE THIS EPISODE OF REALTALK MS

Just copy this link & paste it into your text or email: https://realtalkms.com/467

ADD YOUR VOICE TO THE CONVERSATION

I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!

Email: jon@realtalkms.com
Phone: (310) 526-2283

And don't forget to join us in the RealTalk MS Facebook group!


LINKS

If your podcast app doesn't allow you to click on these links, you'll find them in the show notes at www.RealTalkMS.com

JOIN: The RealTalk MS Facebook Group
https://facebook.com/groups/realtalkms

REVIEW: Give RealTalk MS a rating and review
http://www.realtalkms.com/review


Follow RealTalk MS on X, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.

RealTalk MS Episode 467
Guests: Dr. Aliza Ben-Zacharia and Linda Lachman

Frequently Asked Questions

What is shared decision-making in multiple sclerosis care?

Shared decision-making is a collaborative process where the neurologist or nurse practitioner and the patient work together to make healthcare choices based on medical evidence and what matters most to the patient's lifestyle and goals.

How do Aliza Ben-Zacharia and Linda Lachman make shared decision-making work?

They build a long-term trusting relationship through open communication, mutual respect, listening to each other's perspectives, and treating the patient as an equal partner in managing a chronic illness.

Why is shared decision-making important for MS patients?

It helps patients move from being passive receivers of care to active participants, which increases treatment adherence and provides a sense of empowerment in managing a lifelong disease.

WEBVTT

00:00:18.310 --> 00:00:21.400
It's August 11th, and we have a lot to talk about.

00:00:22.150 --> 00:00:27.460
If you Google the term shared decision-making, you'll find it defined as a collaborative

00:00:27.460 --> 00:00:32.050
process where patients and clinicians work together to select tests,

00:00:32.050 --> 00:00:33.650
treatments, and care plans

00:00:34.020 --> 00:00:38.510
based on clinical evidence and the patient's personal values and goals.

00:00:39.120 --> 00:00:44.520
It relies on two main participants, the clinician who provides medical expertise

00:00:44.740 --> 00:00:49.670
while explaining risks and benefits, and the patient who shares their lifestyle

00:00:49.670 --> 00:00:52.660
preferences, values, and unique needs.

00:00:53.250 --> 00:00:57.300
But for some people living with MS, appointments with their neurologist are

00:00:57.300 --> 00:01:02.570
actually quite different because more than a few doctors still cling to an outdated

00:01:02.570 --> 00:01:05.220
model of healthcare delivery and patient care

00:01:05.690 --> 00:01:08.590
that puts the doctor on some sort of a pedestal,

00:01:09.080 --> 00:01:14.300
prescribing medications and issuing treatment plans as if they're edicts arriving

00:01:14.300 --> 00:01:17.310
with an accompanying lightning bolt from Mount Olympus.

00:01:18.120 --> 00:01:23.900
With access to information just a mouse click away, and Dr. ChatGPT answering

00:01:23.900 --> 00:01:29.120
more than 40,000 healthcare-related questions a day, people expect more.

00:01:29.800 --> 00:01:36.100
More details, more engagement, and more two-way communication from healthcare providers.

00:01:36.900 --> 00:01:40.570
You know, it seems logical that people are more likely to adhere to a treatment

00:01:40.570 --> 00:01:42.340
plan that they've helped to create.

00:01:42.810 --> 00:01:47.000
And patients who do participate in shared decision-making come away with this

00:01:47.000 --> 00:01:51.890
great feeling of empowerment as they become an active participant in their treatment

00:01:52.230 --> 00:01:55.040
instead of a passive receiver of that treatment.

00:01:55.820 --> 00:01:59.060
But shared decision-making isn't an automatic happy pill.

00:01:59.590 --> 00:02:04.250
It takes work, it takes discipline, and it takes a clear understanding of both

00:02:04.250 --> 00:02:06.260
the patient's and the clinician's roles,

00:02:07.260 --> 00:02:11.960
This week, Dr. Aliza Ben-Zacharia and Linda Lachman are joining me to share

00:02:11.960 --> 00:02:17.350
how shared decision-making has worked for them over the course of their long-time relationship.

00:02:18.060 --> 00:02:22.880
Dr. Ben-Zachariah is a nurse practitioner specializing in MS care in New York

00:02:22.880 --> 00:02:27.760
City, and Linda has lived with MS since being diagnosed in 2005.

00:02:28.460 --> 00:02:34.080
In a moment, we'll meet my guests, Dr. Elisa Ben-Zacharia and Linda Lackman.

00:02:38.900 --> 00:02:42.330
Shared decision-making occurs when a patient and their health care provider

00:02:42.680 --> 00:02:47.760
work together to make choices about care based on medical facts and the things

00:02:47.760 --> 00:02:49.520
that matter most to the patient.

00:02:50.160 --> 00:02:54.840
In shared decision-making, the patient is no longer a passive receiver of treatment.

00:02:55.300 --> 00:02:58.660
Instead, they become an active participant in their treatment,

00:02:58.930 --> 00:03:02.850
and that can make all the difference when it comes to adhering to that treatment

00:03:02.850 --> 00:03:07.900
plan and gaining a sense of empowerment when it comes to determining how you're

00:03:07.900 --> 00:03:09.780
going to manage living with MS.

00:03:10.550 --> 00:03:14.550
Joining me today are Dr. Elisa Ben-Zacharia and Linda Lachman.

00:03:15.310 --> 00:03:20.110
Dr. Ben-Zacharia is a nurse practitioner specializing in MS care in New York

00:03:20.110 --> 00:03:24.110
City, where she's also a full-time faculty member at Hunter College.

00:03:24.760 --> 00:03:28.580
Linda Lachman was the founder and president of Delphi Associates,

00:03:28.770 --> 00:03:31.580
a strategic marketing and market research firm.

00:03:32.060 --> 00:03:38.030
Linda's lived with MS since 2005, and Dr. Ben Zacharia has been Linda's MS

00:03:38.350 --> 00:03:40.570
healthcare provider for many years.

00:03:41.140 --> 00:03:44.740
Dr. Ben Zacharia, Linda, welcome to the podcast.

00:03:45.380 --> 00:03:46.090
Thank you.

00:03:46.390 --> 00:03:51.510
My first question is for both of you. You two have worked together for many years.

00:03:51.940 --> 00:03:56.110
So take us back to the early days of your clinical relationship.

00:03:56.650 --> 00:04:02.340
How did you first establish the baseline of trust needed for true shared decision-making?

00:04:02.930 --> 00:04:05.240
Dr. Ben-Zechariah, why don't we start with you?

00:04:05.740 --> 00:04:11.060
You're taking me so many years ago. I think it was probably immediately after,

00:04:12.160 --> 00:04:17.570
Linda was diagnosed, maybe early 2000, 2006. I think,

00:04:21.630 --> 00:04:27.240
as a nurse practitioner, I think perhaps my perspective is a bit different.

00:04:27.240 --> 00:04:34.640
And I think working together with a well-known team and a great team that I've learned so much from,

00:04:35.310 --> 00:04:42.690
I think getting to know patients, getting to know their family, listening to patients,

00:04:43.510 --> 00:04:47.930
having, of course, my spiel, too, as explaining the disease,

00:04:47.930 --> 00:04:51.060
the MS, as it was very new to Linda.

00:04:51.060 --> 00:04:55.760
And thinking about what is MS, what to perhaps expect from the disease,

00:04:56.130 --> 00:05:01.990
what is a relapse of MS. Back then, we dealt with many relapses because we didn't

00:05:01.990 --> 00:05:04.330
have as effective medication as we have now.

00:05:05.650 --> 00:05:09.860
Building that relationship, I've met Linda's husband.

00:05:10.690 --> 00:05:15.890
I haven't met Linda's son, but I know so much about Douglas that I think it's,

00:05:16.120 --> 00:05:20.280
I think it's becomes almost like a family, but I'm still the clinician.

00:05:20.530 --> 00:05:23.200
I'm still the person that guide the conversation.

00:05:23.500 --> 00:05:26.210
I'm still the person that explain about MS.

00:05:27.180 --> 00:05:31.930
I am the expert, but I think Linda had a lot to say, number one,

00:05:32.210 --> 00:05:35.340
from her point of view. What does MS mean to her?

00:05:36.130 --> 00:05:42.690
What do the symptoms mean to her, the sensory symptoms, the annoying right leg issues?

00:05:42.690 --> 00:05:47.230
So I think building that relationship, listening to each other.

00:05:48.210 --> 00:05:52.880
Me, again, as an expert in the field of MS, thinking about what is the best

00:05:52.880 --> 00:05:57.250
medication for Linda, working with her, thinking about the side effects,

00:05:57.740 --> 00:05:59.430
how to manage the side effects.

00:05:59.430 --> 00:06:05.300
And back then, of course, Linda was on an injectable on one of the platform medications.

00:06:05.640 --> 00:06:10.440
And I think troubleshooting the side effect, thinking about how to make life

00:06:10.440 --> 00:06:15.830
better, how to make quality of life good for people that we know the MS did

00:06:15.830 --> 00:06:18.760
not really have a cure and it's a chronic illness.

00:06:18.950 --> 00:06:23.370
And how can we overcome all different obstacles?

00:06:23.700 --> 00:06:32.220
So I think based on this relationship, each one of us, I guess, Linda, we earned trust.

00:06:32.220 --> 00:06:37.140
We had some very good trusting relationship, and I think that's what perhaps

00:06:37.140 --> 00:06:42.200
makes Linda stay in our practice and then join me in my independent private

00:06:42.200 --> 00:06:43.400
practice in New York City.

00:06:43.760 --> 00:06:50.960
So I think I can say all these, all different discussions about other issues

00:06:50.960 --> 00:06:55.050
too, about life, about New York City, about perhaps some politics.

00:06:55.380 --> 00:06:59.530
I think, but then again, going always back to the main thing,

00:06:59.710 --> 00:07:05.710
how can we make the life of any patients better dealing with MS,

00:07:05.710 --> 00:07:07.230
which is a chronic illness?

00:07:08.030 --> 00:07:12.010
Linda, what about you? How did you initially establish that baseline of trust

00:07:12.010 --> 00:07:14.100
that's needed for shared decision-making?

00:07:14.920 --> 00:07:19.240
Actually, not knowing I had the disease initially, when I was diagnosed,

00:07:19.240 --> 00:07:23.670
I went to a number of different places within the city.

00:07:24.030 --> 00:07:25.850
And at that time, there weren't many.

00:07:26.360 --> 00:07:33.080
So I was deciding based upon the doctors I met, what facilities were available,

00:07:33.490 --> 00:07:36.750
what they told me, basically, at which time

00:07:37.610 --> 00:07:41.410
I decided on Elisa Ben-Zakaria and Dr.

00:07:41.410 --> 00:07:48.500
Lublin, who were at Mount Sinai in New York, which was one of the premier MS centers at the time.

00:07:50.560 --> 00:07:53.810
And we took it from there is basically what happened. So

00:07:56.150 --> 00:08:06.440
it wasn't as maybe as hard a decision in that you didn't have that many to decide from 20 years ago.

00:08:07.190 --> 00:08:12.770
Linda, let me ask you, and maybe we should step back one step and instead of

00:08:12.770 --> 00:08:18.240
diving right in as we have, let me ask you, how do you define shared decision making?

00:08:18.810 --> 00:08:24.840
And what did Dr. Ben Zachariah do early on that signaled to you that your voice

00:08:24.840 --> 00:08:27.970
would be welcome in determining your care?

00:08:29.050 --> 00:08:36.820
Okay. I think shared decision-making in general means exchanging views,

00:08:36.820 --> 00:08:41.300
info, questions, et cetera, as a patient and as a provider.

00:08:41.720 --> 00:08:46.510
So it's the fact that the provider does not just talk and give you information,

00:08:46.910 --> 00:08:54.430
but you are part of the process, which up until I think very recently was not always done very often.

00:08:54.870 --> 00:09:03.920
And the fact that the center where Aliza was and where I initially started to

00:09:03.920 --> 00:09:08.970
get my care from was that way made it very important to me.

00:09:08.970 --> 00:09:13.670
It was also a center, a center where there were doctors, there were nurses,

00:09:13.670 --> 00:09:17.060
there were help in terms of nutritionists.

00:09:17.060 --> 00:09:26.240
There was a much larger approach to MS, not as one disease, but as a lifelong

00:09:26.240 --> 00:09:30.970
issue that you're going to have to make changes as life goes along, too.

00:09:31.730 --> 00:09:36.100
Dr. Ben Zacharia, as a nurse practitioner specializing in MS,

00:09:36.410 --> 00:09:38.980
you have deep clinical expertise.

00:09:39.850 --> 00:09:44.680
How do you mentally pivot during an appointment to ensure your specialized knowledge

00:09:45.010 --> 00:09:49.320
leaves room for Linda's expertise in her own body and lifestyle?

00:09:50.230 --> 00:09:53.840
I think that you learn it over time.

00:09:54.220 --> 00:09:59.470
I think in the beginning of my career, it wasn't probably intuitive because

00:09:59.910 --> 00:10:05.570
everyone learned the paternalistic approach. You know better. You are the expert in MS.

00:10:06.020 --> 00:10:09.230
You probably ought to tell patients what to do, how to do it,

00:10:09.520 --> 00:10:10.690
and et cetera, et cetera.

00:10:10.860 --> 00:10:17.760
So I think, but you learn over time that the best way is to allow a patient

00:10:17.760 --> 00:10:21.410
to voice and to be partner in the care because once.

00:10:22.910 --> 00:10:27.410
It's something that they think is appropriate and the right thing to do,

00:10:27.600 --> 00:10:29.230
the right choice for them is,

00:10:29.620 --> 00:10:35.260
they're more likely to do it. So I think you incorporate it together in the

00:10:35.690 --> 00:10:37.310
visit, in the follow-up visit.

00:10:38.390 --> 00:10:43.700
Sometimes it may be challenging. However, I think you try to start the visit

00:10:43.700 --> 00:10:46.490
by listening to patients because they come to see you.

00:10:47.390 --> 00:10:51.620
Any changes? What are your signs and symptoms? And you try to say,

00:10:51.620 --> 00:10:56.150
okay, let's perhaps do this. And thinking about, for example,

00:10:56.150 --> 00:10:59.520
if it's fatigue, which Linda often mentioned in the visit.

00:10:59.730 --> 00:11:04.800
So we try to see how can we manage it differently with non-pharmacological agents.

00:11:05.330 --> 00:11:07.990
That's something that's very important for Linda, for example.

00:11:08.270 --> 00:11:13.790
So I think you can do it in between. It's not that you leave room in the middle or in the end.

00:11:14.000 --> 00:11:20.240
It's a very good question. But I think you try to balance it out throughout the visit.

00:11:20.420 --> 00:11:26.240
You voice your things. You say, okay, my expertise is that we ought to do this

00:11:26.240 --> 00:11:31.830
and this And that perhaps includes some more exercise for the fatigue and build

00:11:31.830 --> 00:11:34.720
up some energy and then think about other things.

00:11:34.720 --> 00:11:41.350
So I think the main focus is to think about patients as partners throughout

00:11:41.350 --> 00:11:46.510
the visit and have some, and Linda just mentioned it, have exchange of opinion.

00:11:46.750 --> 00:11:51.840
Say, okay, and I think Linda respects the fact that I'm an expert in MS.

00:11:52.090 --> 00:11:55.730
She comes to see me because she would like to hear what I have to say.

00:11:55.910 --> 00:11:59.610
Same as we have done when we worked together with Dr. Lublin in the center.

00:11:59.900 --> 00:12:04.610
So I think patient commands to listen to us as experts, as you mentioned.

00:12:05.350 --> 00:12:11.350
But also would like to contribute to the discussion because they are fully partnered,

00:12:11.350 --> 00:12:13.620
fully active in that discussion.

00:12:13.840 --> 00:12:17.970
And I would say it's just, I don't know, I think it's sometimes hard to say

00:12:17.970 --> 00:12:20.610
how it comes to be in an action.

00:12:20.820 --> 00:12:23.990
It's just you say something and then the patient says something and Linda would

00:12:23.990 --> 00:12:28.220
say, okay, I think I ought to do this. And we come sometimes,

00:12:28.990 --> 00:12:33.990
You may compromise on certain things. You say, perhaps maybe wait on this medication.

00:12:34.180 --> 00:12:37.110
You're on so many other meds. Let's do something different.

00:12:37.850 --> 00:12:41.270
And I think Linda is always pro less medication rather than more.

00:12:41.560 --> 00:12:46.270
So I think it comes in between each moment of the visit.

00:12:46.860 --> 00:12:51.740
Now I think it's more intuitive to me that I think patients are my partners.

00:12:51.740 --> 00:12:58.570
They're almost equal partner. Although, again, I think we have the expertise,

00:12:58.570 --> 00:13:03.490
and I think we have to guide patients very often in the relation to the disease-modifying

00:13:03.490 --> 00:13:06.490
treatment for MS or symptom management of MS.

00:13:06.920 --> 00:13:12.480
But I think always to think that patients are an integral part of all the decisions

00:13:12.480 --> 00:13:16.700
that we make together in the center, hopefully to get the best outcome.

00:13:17.260 --> 00:13:20.640
It's gone on for so many years that, you know, you go to your doctor,

00:13:20.640 --> 00:13:24.620
your doctor knows what it is, and your doctor gives you their opinion.

00:13:24.950 --> 00:13:31.150
And I think the fact of sharing in terms of decision-making is relatively new.

00:13:31.620 --> 00:13:35.810
There have always been doctors, I guess, that felt that the patient had something to add.

00:13:36.140 --> 00:13:39.600
But there also have always been doctors who felt, you came to me,

00:13:39.600 --> 00:13:41.410
I'm the doctor, I'll tell you what to do.

00:13:42.330 --> 00:13:48.910
And I don't react well to that. So if I was in that kind of situation,

00:13:48.910 --> 00:13:50.730
I think I would look for another doctor.

00:13:51.180 --> 00:13:56.470
And I think some people do, especially since MS is a lifelong disease.

00:13:56.910 --> 00:14:01.400
You're going to be doing this for a long time. So you should feel comfortable

00:14:01.760 --> 00:14:07.910
in the situation to say what your issues are, what kinds of things you're experiencing

00:14:07.910 --> 00:14:10.970
that are different or that have just arisen.

00:14:12.050 --> 00:14:17.300
You have to feel, as I said, comfortable with your physician or your PA, whichever way.

00:14:18.230 --> 00:14:23.460
Linda, because MS symptoms can change and new disease-modifying therapies emerge,

00:14:23.770 --> 00:14:28.300
you've likely faced some treatment choices since 2005.

00:14:28.850 --> 00:14:33.680
Has there ever been a specific treatment or a lifestyle decision where you and

00:14:33.680 --> 00:14:37.620
Dr. Ben Zacharia didn't immediately see eye-to-eye?

00:14:38.190 --> 00:14:40.410
And if there has, how did it get resolved?

00:14:40.970 --> 00:14:50.470
Probably not. But I think I started with giving myself injections three times a week.

00:14:52.180 --> 00:14:59.890
I initially was having a problem with three times a week, and we had a discussion with Dr.

00:14:59.890 --> 00:15:04.990
Ben Zacharia, Dr. Lublin, et cetera, that it was too much for me to also

00:15:04.990 --> 00:15:12.670
be able to live my life with that much kind of medicine going in me on a weekly basis.

00:15:13.670 --> 00:15:18.060
And we resolved that issue and have resolved it over the years.

00:15:18.380 --> 00:15:22.010
But basically, I was lucky.

00:15:22.500 --> 00:15:29.930
They did always listen to me. They did always take my problems as well as my

00:15:30.190 --> 00:15:35.390
feelings about the subject into consideration, which I think is highly unusual.

00:15:35.730 --> 00:15:38.890
I hope it isn't unusual with a lifelong disease.

00:15:39.670 --> 00:15:43.960
Dr. Ben-Zacharia, I think you've actually started to answer my next question

00:15:44.560 --> 00:15:45.790
during our conversation.

00:15:46.130 --> 00:15:51.940
I'm curious, when you present treatment options to a patient who has lived with MS for over two decades,

00:15:52.550 --> 00:15:57.990
how do you frame the risks, the benefits, and the evidence-based data so that

00:15:57.990 --> 00:16:03.150
it's truly accessible and collaborative rather than simply prescriptive?

00:16:03.870 --> 00:16:10.830
I usually try to think about the disease-modifying treatment as categories.

00:16:11.730 --> 00:16:18.740
Because I think we have so many medications today, and it's exciting, although challenging.

00:16:19.530 --> 00:16:28.100
And I think we do have some biomarkers to fit patients into certain categories, but it's not.

00:16:28.100 --> 00:16:34.060
So we're not very, very close to precision medicine. But I think we're getting

00:16:34.060 --> 00:16:40.630
there. We have some new markers that can perhaps help us make decisions and guide patients.

00:16:41.030 --> 00:16:45.150
So when I presented the patient, I usually present it as categories.

00:16:46.370 --> 00:16:53.120
I do start with saying that there are some highly effective medications,

00:16:54.170 --> 00:16:58.050
and some medications have low effectiveness in MS.

00:16:58.400 --> 00:17:04.750
I start with the big pictures, and I try to see if patients are thinking about

00:17:04.750 --> 00:17:10.960
more the risks that are related to medications, disease-modifying treatment, or they are more.

00:17:12.540 --> 00:17:16.720
Thinking about the effectiveness, the efficacy as we talk in MS language.

00:17:17.530 --> 00:17:25.390
So I try to see what patients really are going towards, what their views of

00:17:25.390 --> 00:17:30.730
disease-modifying therapy and what their risk aversion or not aversion.

00:17:30.730 --> 00:17:33.190
So trying to really gauge patients.

00:17:34.230 --> 00:17:40.860
So first I start with the high efficacy, low efficacy, concerns that this medication

00:17:40.860 --> 00:17:44.470
have, trying to say the most...

00:17:45.950 --> 00:17:50.850
I guess, concerning side effects. I don't think at a visit you need to present

00:17:50.850 --> 00:17:53.750
all the side effects in the world of every medications.

00:17:54.050 --> 00:17:58.090
You will never find to finalize a visit if you'll do that.

00:17:59.060 --> 00:18:04.150
But so I do that as a first category. Then I go into the oral,

00:18:04.560 --> 00:18:09.760
the intravenous medications, and then I speak about the injectable.

00:18:10.820 --> 00:18:16.350
The injectable, I do separate between the platform that are available for many,

00:18:16.350 --> 00:18:25.110
many years and are fairly safe in MS. And then I separate the anti-CD20 casinta or fatumumab.

00:18:25.450 --> 00:18:32.100
So I try to talk to people, to patients about the categories,

00:18:32.330 --> 00:18:34.770
the risk associated with the categories.

00:18:34.940 --> 00:18:37.550
I try not to overwhelm patients.

00:18:37.880 --> 00:18:42.260
I sometimes do another visit to talk about it, to allow patients to think about

00:18:42.260 --> 00:18:49.110
it, unless there is an urgency of starting an immediately disease-modifying therapy.

00:18:49.460 --> 00:18:54.780
So I think it's important to give patients two pictures of what's available

00:18:55.100 --> 00:18:58.090
out there, some of the science and the evidence.

00:18:58.090 --> 00:19:04.890
I do speak briefly about the science and some of the studies that showed efficacy,

00:19:04.890 --> 00:19:07.050
and I give some numbers, percentage.

00:19:07.940 --> 00:19:13.110
I do say that some of these medications are not compared to each other, so it's hard to tell.

00:19:15.100 --> 00:19:16.500
Often, I start,

00:19:17.030 --> 00:19:20.930
any general overview, but to say honestly, if I, for example,

00:19:20.930 --> 00:19:25.900
think a patient will benefit from a high effectiveness of high efficacy drug,

00:19:26.280 --> 00:19:31.980
like an intravenous medications, I will limit the discussion perhaps,

00:19:33.700 --> 00:19:39.040
to two families or just to one and say this is my opinion.

00:19:39.040 --> 00:19:44.250
I think as an expert in MS, you ought to go on high efficacy.

00:19:44.530 --> 00:19:48.520
And I try to explain, this is related to the clinical presentations,

00:19:48.850 --> 00:19:55.370
your signs and symptoms that you came today to see me, and the findings on your films on the MRI.

00:19:55.370 --> 00:19:59.850
I can share with you the films if you'd like to see. I tell patients,

00:20:00.110 --> 00:20:05.740
most patients like to see the MRI. I explain the lesions on the MRI.

00:20:05.990 --> 00:20:10.890
So I will tell patients, I think you really will benefit from these medications.

00:20:11.940 --> 00:20:15.100
And if you'd like to hear about some others, in New York City,

00:20:15.100 --> 00:20:18.390
patients, to say, honestly, are very knowledgeable. They read.

00:20:18.390 --> 00:20:21.840
Sometimes they have misconception about the medication and the data,

00:20:22.160 --> 00:20:24.600
the scientific data of medication.

00:20:24.960 --> 00:20:29.830
So you need to just correct those misconceptions. But tell patients,

00:20:29.830 --> 00:20:32.870
I think you ought to go on high efficacy drug.

00:20:33.030 --> 00:20:37.240
If you'd like, we can talk about the oral medications and other medications

00:20:37.240 --> 00:20:40.600
that perhaps are less effective than the drug that I mentioned.

00:20:40.600 --> 00:20:44.920
So I try to balance it out, I must say.

00:20:45.170 --> 00:20:50.310
But if someone comes in and have a very active picture of MS,

00:20:50.430 --> 00:20:55.700
I will perhaps just talk about one medication or two medication as treatment

00:20:55.910 --> 00:20:57.450
and not do the whole spiel.

00:20:57.730 --> 00:21:02.400
It depends also on the questions that patients have. I try to listen.

00:21:02.400 --> 00:21:05.160
I see what their goals in mind are.

00:21:06.040 --> 00:21:10.440
What do you know? I ask them, what do you know about the disease-modifying therapy?

00:21:10.760 --> 00:21:14.620
Because some people come for a second opinion, so they knew they had MS already.

00:21:15.010 --> 00:21:20.240
But if it's someone that's long have MS, they know so much about the different medication.

00:21:20.240 --> 00:21:25.070
They know about the risk, about the concerns related to many of the medication.

00:21:25.070 --> 00:21:31.100
But I try to give them a fair picture, I must say. I try to do the best I can

00:21:31.100 --> 00:21:37.000
in the time of the visit to give them that picture of all the categories if necessary.

00:21:37.220 --> 00:21:42.970
It. If not necessary, as I mentioned, I do just one or two medications and hope the patient agrees.

00:21:42.970 --> 00:21:46.300
If the patient comes to mind that they want oral medications,

00:21:46.300 --> 00:21:50.800
then sometimes you have to go along with that because they will take the oral

00:21:50.800 --> 00:21:55.840
medication. Either it's once a day or twice a day or whatever the frequency is.

00:21:56.640 --> 00:22:02.180
But I try to give them true information, not to overwhelm them,

00:22:02.180 --> 00:22:04.660
as I said, but you need to share,

00:22:05.470 --> 00:22:09.650
true information. You need to guide patients. You need to teach them about the

00:22:09.650 --> 00:22:14.430
correct data about each medication and the concern and the risks.

00:22:14.430 --> 00:22:18.060
If there are risks for infection, patients must know that. They need to know,

00:22:18.960 --> 00:22:26.090
the most prevalent side effects or risks that are involved in every medications.

00:22:27.180 --> 00:22:33.110
Linda, whether someone is living with MS or not, a lot of life gets lived over 20 years.

00:22:33.710 --> 00:22:38.250
Your priorities and goals for your health in 2005 were probably a little different

00:22:38.250 --> 00:22:39.680
from what they might be today.

00:22:40.340 --> 00:22:45.280
Has the way you communicate with Dr. Ben Zacharia shifted as your personal

00:22:45.280 --> 00:22:48.020
goals, your life stages have evolved?

00:22:49.050 --> 00:22:49.570
Sure.

00:22:51.800 --> 00:22:55.180
Aliza was not my initial physician. She was

00:22:57.760 --> 00:23:04.530
part of a team with Dr. Lublin, who was the major head of that particular facility.

00:23:06.400 --> 00:23:11.670
But we've always had a close relationship in terms of what was going on in my life.

00:23:13.580 --> 00:23:20.370
I used to bring my husband with me. It became something where she was someone

00:23:20.370 --> 00:23:23.090
I just knew as a friend almost for a long time.

00:23:23.580 --> 00:23:28.450
And I trust what she says. She listens to what I say.

00:23:29.010 --> 00:23:32.920
And we've gone from there for many, many years at this point.

00:23:34.000 --> 00:23:34.990
Amazingly, yes.

00:23:38.480 --> 00:23:44.890
I think I ask about changes and things. Obviously, I have been taking injections

00:23:44.890 --> 00:23:48.090
for a lot of years, which is not my favorite way to take medicine.

00:23:49.100 --> 00:23:54.440
I would much rather take a pill. And we've had that discussion a number of times

00:23:55.280 --> 00:23:59.560
in terms of what the new medicines are, how they affect you, etc.

00:24:01.360 --> 00:24:06.890
Since I've been doing very well on the injections and I'm used to them, I do take them.

00:24:07.350 --> 00:24:12.420
And it makes it easier for me. I don't have to figure out which pills work or

00:24:12.420 --> 00:24:14.460
which pills don't, and Alisa doesn't either.

00:24:14.930 --> 00:24:17.940
So I think, you know,

00:24:18.480 --> 00:24:24.780
it's a long-term relationship that is honest, that provides information when

00:24:24.780 --> 00:24:29.240
necessary on both sides, you know, what's happening in my life versus what's

00:24:29.240 --> 00:24:32.020
out there that's new and different that maybe I should consider.

00:24:33.920 --> 00:24:35.390
And it works, thank goodness.

00:24:36.260 --> 00:24:41.100
Dr. Ben Zacharia, what advice do you have for other clinicians who want to

00:24:41.100 --> 00:24:46.650
implement shared decision-making, but they may feel constrained by short appointment

00:24:46.650 --> 00:24:50.740
times or rigid institutional structures or culture?

00:24:51.440 --> 00:24:55.940
I think the same as we sometimes very often do with medication.

00:24:55.940 --> 00:25:00.690
We try to tighten it up. We do gradual things always in life.

00:25:00.690 --> 00:25:08.110
And I think all clinicians can perhaps introduce just one moment of shared decision-making,

00:25:08.110 --> 00:25:10.970
if I can call it that way, in their practice.

00:25:10.970 --> 00:25:16.580
So maybe they cannot ask patients too many questions the whole visit and do

00:25:16.580 --> 00:25:19.880
the full partnership things as some of us do.

00:25:20.160 --> 00:25:26.160
But even if they incrementally increase the partnerships that they experience

00:25:26.160 --> 00:25:28.600
with patients, I think that will be a plus.

00:25:28.600 --> 00:25:33.140
So just, again, one moment, just say to patient, what are your goals?

00:25:33.140 --> 00:25:35.890
What do you want to accomplish? And then patient can tell them and say,

00:25:35.890 --> 00:25:40.310
okay, I listened to you. I heard your goals. Let's do this, this, and this.

00:25:40.480 --> 00:25:44.350
And then we'll continue to follow up in the next visit when I see you next time

00:25:44.490 --> 00:25:46.800
in three months, in six months, whatever the visit.

00:25:47.060 --> 00:25:51.550
So I think when you do that, you show patients, number one, that you're open to that partnership.

00:25:51.810 --> 00:25:54.470
Maybe perhaps you haven't done it throughout the whole visit,

00:25:54.770 --> 00:25:58.520
but I think it's okay. It's just to show patients, I ask you your goals,

00:25:58.520 --> 00:26:02.460
I know what you want, what you want to accomplish on the short term and the long terms.

00:26:02.880 --> 00:26:09.010
And we can walk the walk of MS, the long journey of MS.

00:26:09.010 --> 00:26:13.320
Again, we mentioned it, it's a chronic illness. So I think that's something

00:26:13.320 --> 00:26:21.190
that will be such a tremendous step showing to patients that the clinician is willing to do that.

00:26:21.190 --> 00:26:24.070
And I realize that we have to be realistic.

00:26:24.280 --> 00:26:30.030
Sometimes we don't have too much time to do what we would like to do and spend

00:26:30.030 --> 00:26:32.480
with patients and listen throughout the visit.

00:26:32.790 --> 00:26:38.200
But I think if you do just one moment of sharing and partnership.

00:26:38.980 --> 00:26:45.620
It will allow patients to know that in the future, they'll see a lot more of

00:26:45.620 --> 00:26:49.930
shared decision-making and partnerships and listening to them.

00:26:50.120 --> 00:26:55.750
I think it's opened the door to more and more shared decision-making in the future.

00:26:56.660 --> 00:27:00.930
Linda, for someone listening to our conversation who might feel intimidated

00:27:00.930 --> 00:27:05.810
to speak up or disagree with their health care provider, what practical advice

00:27:05.810 --> 00:27:09.040
would you give them to advocate for a shared partnership?

00:27:09.780 --> 00:27:16.720
I think initially I would try to see if you could discuss sharing information.

00:27:16.720 --> 00:27:21.980
You know, if this is what's important to you and they're not responding to your

00:27:22.340 --> 00:27:26.990
needs, you have to say, well, can we do this or can we do that?

00:27:27.490 --> 00:27:32.550
And obviously the end result is to look for a new provider if that is not going to happen.

00:27:33.160 --> 00:27:38.850
But that's hard. and it's difficult to find people who have the expertise and

00:27:38.850 --> 00:27:41.380
who really know what's going on in the field.

00:27:42.560 --> 00:27:45.490
You know, living in a large city, it's not as hard.

00:27:46.040 --> 00:27:50.740
This is a big country and I'm sure in a lot of other places it is really difficult to do.

00:27:51.210 --> 00:27:55.840
So you need to have a discussion. You need to talk to your provider. You really do.

00:27:56.200 --> 00:28:00.810
And you have to decide what your needs are, what you really want from this,

00:28:00.810 --> 00:28:05.450
how you're feeling, how it's changing, how the meds are helping you or not helping you.

00:28:05.730 --> 00:28:09.710
You know, you have to have a total discussion with someone and leave the door

00:28:09.710 --> 00:28:14.730
open that in case something happens in between my appointment now and my appointment

00:28:14.730 --> 00:28:17.220
three months from now, this, can I call you?

00:28:17.510 --> 00:28:22.490
Can I make sure you're going to get back to me? You know, I think you alleviate

00:28:22.490 --> 00:28:27.710
the emergency of the situation if you are able to have the knowledge that you

00:28:27.710 --> 00:28:29.380
can contact your provider.

00:28:30.310 --> 00:28:35.230
I started our conversation with a question for both of you, and I'm going to end it the same way.

00:28:36.010 --> 00:28:41.410
If you could each boil down the secret to a successful multi-year clinician-patient

00:28:41.410 --> 00:28:45.990
partnership into a single phrase or principle, what would it be?

00:28:46.850 --> 00:28:48.350
Linda, let's start with you.

00:28:49.010 --> 00:28:49.710
I think

00:28:51.830 --> 00:29:00.210
know your patient and know your doctor. What are the issues that are involved as a patient for you?

00:29:00.720 --> 00:29:04.220
And does your doctor understand that? And if not, talk to them.

00:29:04.220 --> 00:29:09.080
I mean, there's a whole issue in terms of people discussing things, which they don't do.

00:29:10.610 --> 00:29:15.990
So, you know, that's part of being a patient too, to have the ability to talk

00:29:15.990 --> 00:29:19.050
to someone to get the answers you need.

00:29:19.320 --> 00:29:23.330
And if you don't get them, look for another physician quickly.

00:29:24.250 --> 00:29:26.380
Dr. Ben-Zacharia, same question.

00:29:27.200 --> 00:29:35.380
I think I would say concepts of trusting relationship and respectful relationship.

00:29:35.380 --> 00:29:40.820
I think we always have to remember that, yes, we are the clinician,

00:29:41.280 --> 00:29:43.530
the patient's coming for our advice.

00:29:43.530 --> 00:29:50.090
However, if we build these relationships upon trust, as I mentioned,

00:29:50.090 --> 00:29:53.050
and respect, you continue that.

00:29:54.080 --> 00:30:00.230
Long-time clinician-patient relationship, perhaps more than that.

00:30:01.710 --> 00:30:06.460
I think there is always the virtual friendship. You get to know patients over 20 years.

00:30:06.870 --> 00:30:12.910
And I think always thinking about asking patients about their goal,

00:30:12.910 --> 00:30:20.380
preferences, values, and sharing the decision because I think we both want the same outcomes.

00:30:21.290 --> 00:30:26.210
We as clinicians, or I as a clinician, like to have the best outcome for my

00:30:26.210 --> 00:30:30.260
patients, that they'll do well with chronic disease like MS.

00:30:30.260 --> 00:30:31.870
And patients want the same thing.

00:30:32.280 --> 00:30:38.120
They want quality of life. So I think we just have to always meet in that middle,

00:30:39.530 --> 00:30:46.650
overcome any conflicts or obstacles that we may have, but continue to always

00:30:46.650 --> 00:30:50.030
listen to each other and respect each other.

00:30:50.800 --> 00:30:56.720
I think patients also and NMS have a different relationship with the provider

00:30:57.060 --> 00:31:01.260
than you typically have with a provider because it's not a one-shot deal.

00:31:01.670 --> 00:31:06.470
This is an ongoing disease that's going to affect you for the rest of your life.

00:31:06.830 --> 00:31:11.380
And you have to feel comfortable in the relationship with your provider and

00:31:11.380 --> 00:31:15.020
trusting that they are going to look out for you too.

00:31:15.130 --> 00:31:18.080
And, you know, knowledgeable too in your own right, but

00:31:19.450 --> 00:31:28.300
there's a difference in a long-term disease and a provider and just a regular,

00:31:28.300 --> 00:31:30.380
I have a sore throat, I'm going to the doctor.

00:31:31.440 --> 00:31:37.090
It's a different relationship and it's built over years. And I think it's very

00:31:37.090 --> 00:31:41.950
important to maintain it, especially of the disease like MS.

00:31:42.600 --> 00:31:46.770
Well, Dr. Aliza Ben-Zacharia and Linda Lachman, I want to thank you both for

00:31:46.770 --> 00:31:51.300
moving shared decision-making out of the textbook and demonstrating how it can

00:31:51.300 --> 00:31:53.050
actually function in the real world.

00:31:53.500 --> 00:31:55.630
And thanks so much for talking with me today.

00:31:56.130 --> 00:31:56.670
Thank you.

00:31:57.220 --> 00:31:57.640
Thank you.

00:31:58.100 --> 00:32:02.730
That's going to wrap up this episode of Real Talk MS. Real Talk MS is powered

00:32:02.730 --> 00:32:04.430
by the National MS Society,

00:32:04.850 --> 00:32:09.010
and you can share this episode of the podcast by letting your friends or family

00:32:09.010 --> 00:32:14.270
members know that all they have to do is point their web browser at realtalkms.com slash

00:32:15.020 --> 00:32:17.020
467.

00:32:17.670 --> 00:32:21.680
You'll find that link in today's show notes, so you can easily copy and paste

00:32:21.680 --> 00:32:24.030
it right into an email or a text.

00:32:25.130 --> 00:32:30.290
Imagine your significant other or spouse has been diagnosed with MS shortly

00:32:30.290 --> 00:32:36.100
after you've been diagnosed with stage 4 colon cancer, and instantly the roles

00:32:36.100 --> 00:32:39.910
of patient and care partner get rewritten for both of you.

00:32:40.870 --> 00:32:43.850
Well, that's exactly what happened to Kathleen and Rick Silva.

00:32:44.480 --> 00:32:49.140
Kathleen Silva joins me next week to walk us through how, against all odds,

00:32:49.520 --> 00:32:52.160
she and Rick survived and thrived.

00:32:52.570 --> 00:32:54.700
It's a conversation you won't want to miss.

00:32:55.690 --> 00:33:02.170
I'm John Strum. Thanks for listening. Stay safe and make healthy choices.