James W. Wheless, MD, a neurologist, discusses how families affected by LGS can talk with their healthcare team about treatments they have heard about and why asking about a trial of a therapy may help guide shared decision-making.
Transcript
If families, you know, have heard about — whether it’s a friend, neighbor, relative, you know — another treatment that somebody benefited from that I haven’t mentioned to him.
And if I didn’t bring it up during the visit, I actually like it when families say something like, “Is it possible that whatever medicine it is, will this treatment help my son, daughter, loved one, and would be at a benefit?” Or, “Are there any downsides to trying it?”
Because a lot of times, if I’m not sure if there’s not downsides, it’s like, OK, then there’s no harm in trying it.
And a lot of times I think if family kind of coaches their terminology a little bit, and if they say, you know, “Could we do a trial of this?” then, you know, makes it easier I think a lot of times for physicians that might be resistant to extend.
They they don’t view it as though the families want to totally change their medicine. It’s like, “We’re going to try it.”
And obviously if we try and it works, as a physician, I’m going to be, “Oh, that was a good idea. Let’s go with that.”
