Richard A. Lewis, MD, explains how he approaches delivering an ALS diagnosis, communicating uncertainty, and supporting patients and families.
What is your specific phrasing or framework for delivering an ALS diagnosis?
Transcript
Well, I don’t have specific phrasing to give the diagnosis. It’s a very complicated situation.
And, to some extent, you have to read the patient and their family, in terms of how much they can take in at any given time. And I think it is very helpful to have family with them when breaking the news, because people don’t hear bad news well, and I say that by meaning not just that they get upset, but sometimes they stop hearing, or listening, when they get that kind of news.
So it depends on where we are in the evaluation. If I’ve seen them 2 or 3 times before, and we come up with the diagnosis after a long evaluation, I would probably have introduced the concept of motor neuron disease before. So that, when I’m talking to them with a more clear diagnosis, they have it in their head that there’s something that’s been a consideration.
On the other hand, if they come to me completely unaware of the concept, or that that’s even a possibility, I would tend to be very cautious in how I talk about the diagnosis, even if it’s very secure in my head. I tend to go over why we think the disorder is what it is. And if there’s no doubt in my mind, I make it clear why there’s no doubt in my mind about this.
I also mentioned that we keep that the evaluation has been looked for all the potential mimics or other disorders that might be more treatable. If it’s not completely clear, that is, they don’t have the situations of the tongue and upper motor and lower motor neuron findings, and the imaging doesn’t show anything, then I might say that the most likely diagnosis is motor neuron disease or ALS, but that we continue to look into this and time will give us more answers. In the meantime, we should treat this as if it’s motor neuron disease. There’s a lot to that.
I tend not to talk about prognosis unless they ask for it, and if they do, I tend to talk in generalities. So the average is this. And then I might say theirs is going slower, if that’s the case. I don’t lie about things, but I do tend to talk about it in ways that might give them a little bit of ability to take a deep breath.
And I mention frequently that the worst time for patients is usually at the beginning, when they get the diagnosis, and that my experience with hundreds of patients is that patients and their families come to grips with the diagnosis and live life as well as they can.
I talk about my goals for them. I talk about how we, as an ALS center, will be there for them through their entire journey. I talk about the team we have to help them with all the symptoms. I talk a little bit about the medications that are available and the pros and cons of all those. I talk about the fact that clinical trials are going on and that we participate in them.
So it’s a lengthy discussion. For some people, it’s a shorter discussion because they don’t want to talk more than they hear it, and that they want to digest this themselves.
So I think it’s just about as much as I can say on that, for a question that’s very difficult to answer because it really is individualized.