Episode Summary

[intro music]   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.   MSDF 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?   Dr. Nogales-Gaete 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.   MSDF Each patient is different from the other patient, but each patient is different over time from what he was before.   Dr. Nogales-Gaete 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.   MSDF 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?   Dr. Nogales-Gaete 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 prepar
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