Host – Dan Keller
Hello, and welcome to Episode Ninety-one of Multiple Sclerosis Discovery, the podcast of the MS Discovery Forum. I’m Dan Keller.
Today's interview features Dr. Jorge Nogales-Gaete, who is Chief of the Department of Neurology and Neurosurgery in the Faculty of Medicine at the University of Chile in Santiago. We spoke at a neurology conference in Santiago about MS patients' perceptions of their clinical care and the importance of the healthcare team's understanding those perceptions.
Interviewer – Dan Keller
Let me ask you about the ethical and clinical imperatives for the healthcare team when they encounter an MS patient to learn their perceptions, to learn their desires, their approach to therapy.
Interviewee – Jorge Nogales-Gaete
I think the patient has at least two different condition on other disease, chronical disease. The first is the age. They're too young to have a chronical disease. There's nobody is prepared to have one. You have think about your lives, your project of life, and then you have a strong situation that is the diagnosis. Then, this is unexpected. It's a disruption. It's not natural. When you are old and you have blood hypertension, well you have time to right it. But when you are so young and you have this kind of disease, it's very strong.
And the other situation is that this disease is not usually the same all the time. You have period that you are normal, you have no manifestation, even the diseases on you. And other you have problem. And in each situations, you are thinking very different. Then you must consider in relation with the patient that nothing is stable. In the consideration of the disease, then you must go again to talk about doubt, about risk again and again. And this is different to other chronical disease.
There's so many variables: there's the patient, the nature of the illness, the nature of the clinician. But also, within the patient is education, knowledge, understanding, age, gender, family, economics. How do you make sense of it all?
Well I think that the first situation is fear. All patients have fear; it's something new. They have doubts, and this is common. You have more prepare in your cognitive system to aware about this. But the fear is just for all equal. If you are warned, if you listen, what they want to know is more easy. Right situation for each patient, each patient is different. Then you must make the effort to be different for your each patient that you have in this moment.
Each patient is different from the other patient, but each patient is different over time from what he was before.
Yes, this is the situation. Then, you must be prepared to take the situation again and again and again and be prepared. I never said we're talking about this. When we talk, we add in another situation, I have another fear, I have another sensation, I have not this problem that now is my problem I want to talk that again.
When you first see these patients, when they're first diagnosed, do you lay out an entire treatment plan? How do you prepare them for the varying course of the disease?
I try to never give all the information in one meeting. I prepare the patient. I said well we are searching something, we find something, but we need to see again. Even when you have a second opinion demanded, I just take my time to say well this is the first situation. You are in this, but not to say all the things. Not to say well this is the disease, you need this treatment, this is the situation. No. You’re having a chronical problem, it seems to be autoimmunity, it seems to be of the central nervous system. Probably it's MS, and we need to work it. Then I prepare first the patient, the family, and then arrive to the diagnosis. And what's meaning in term of care, treatment.
Do you try not to make predictions because if you're wrong the patient may lose trust, may have even more doubt?
Yes. It's not possible to make prediction; that's the first thing. Then, if you make prediction, probably you are wrong. When you are able to make prediction, it has some value because to make a good prediction you need at least 10 years. And it has in sense a prediction 10 years later. I think well, the general population goes in that way, but it hasn’t sense for you specifically.
So it sounds like all you can predict is the unpredictability of the disease.
Yes. And this is important. This is important because you have the possibility to think in a bad scenario but also in a good one.
Do patients want frequent contact and updates or does it vary by who you're talking to?
General, at the beginning, the patient need more contact or when the disease goes worse. But in general, no. When they are in good condition, they need to live the good time without a physician or a medical care team.
What about patients talking to patients or support groups?
Well, this is a difficult situation. Because you have a vast selection of the person who are very good; they don't want to go to see the person who had in bad condition. Then the selection is person in bad condition. And this not reinforce the spirit. It's a political good situation to represent needs. But to work the spirit it's not a good solution.
What about learning coping techniques when they have an exacerbation or even emotional coping techniques because of the doubt and unpredictability?
In this situation, probably it's important the background of the patient: the culture, the individual level. It's more easily the person who have a better condition – educational and economical condition – to adopt methodologies of coping.
How is it, as a physician, being in a specialty that has such wide-ranging disease type and unpredictability of disease course in the patients? I mean some medical specialties the orthopedist says that's a bad hip; I'm going to replace it. You're in sort of the area that we might say is like nailing Jell-O to the wall; it's very hard to nail it down.
I think that MS give you the opportunity to think about the real reality. All are vulnerable, all of us. Then people with MS has this more clear. But just more clear, we are talking now, but nobody know about tomorrow. Then life is uncertainty. Then you must to admit that you don't have the control. You have the possibility to moderate something, but then you don't have the control.
What about approaching general health concerns? Do people look to the neurologist as their general practitioner, or do you have to reinforce with them, yes you have to watch out for your cholesterol and everything else, you need to see someone else also?
We have a public organization based on family physicians general practice. And then you have to be sended to a specialist. And the specialists in general are more aware about the proper field. Then it's a little bit separate, each problem. It's not a good situation. But, cardiologists give the cardiology solution; neurologists make theirs. We have probably internal medicine is the more complete possibility to see all the patient in a comprehensive way.
I guess the real question is, do you have to encourage them to also remember they have general health needs too, and those should be addressed by the generalist.
Yes. You have a problem, but you have the possibility to won two lotteries. Then, you need to attend it. If you are in a good health situation, it's better for all. Then try to be in a good situation about your cholesterol and other things: blood pressure, don't smoke.
Have we missed anything that's important to address?
I think that we are in the hope era. Twenty years ago we have no the same tool that we have now. We have another drugs, we have another meaning of the disease; we understand more the patient necessities. Then it's mean more than a single drug that modify the disease. Patient have fatigue, has fear, has doubt, have pain, have depression. And you need to understand all of these things. Because if you make the correct diagnosis and give the drug that modify the illness, nothing happen with the everyday life of the patient. The everyday life need another answer. That mean it's not just a neurologist, it's not just the physician. You need all the health team that work in this patient.
I appreciate it. Thank you.
Thank you for listening to Episode Ninety-one of Multiple Sclerosis Discovery. This podcast was produced by the MS Discovery Forum, MSDF, the premier source of independent news and information on MS research. Msdiscovery.org is part of the nonprofit Accelerated Cure Project for Multiple Sclerosis. Robert McBurney is our President and CEO, and Hollie Schmidt is Vice President of Scientific Operations.
Msdiscovery.org aims to focus attention on what is known and not yet known about the causes of MS and related conditions, their pathological mechanisms, and potential ways to intervene. By communicating this information in a way that builds bridges among different disciplines, we hope to open new routes toward significant clinical advances.
We’re interested in your opinions. Please join the discussion on one of our online forums or send comments, criticisms, and suggestions to email@example.com.
For Multiple Sclerosis Discovery, I'm Dan Keller.