The patient-provider relationship: Discussing difficult SMA issues

Kevin Schaefer, who lives with SMA type 2, and neurologist Edward Smith, MD, reflect on their preferences for how to go about discussing difficult care decisions or bad news.

Dr. Smith: I don’t think I ever practiced tough love. Maybe I should have. But I have always viewed my role as a physician as being someone who can present options in as unbiased a manner as possible, but present options with pros and cons, and knowing there’s no way around the bias. And making sure that patient and their family know that regardless of what they choose, our physician-patient relationship is as strong as it can be — it’s not going to impact that in any particular way.

There have been patients or families who opted not to treat with one of the medications that’s out there and in certain situations. That is not my decision to make, in my mind. I can advocate for something, but the last thing I want is to do something that would dissolve that relationship or push that family or patient out the door to another provider.

I understand there are patients and families who want to hear, “What should I do? What do I need to do?” And I’m happy to weigh in on that, but I think everyone I’ve ever treated would know and would agree that they were presented with options — hopefully, we had options — presented with options to choose from and did not have a treatment dictated to them.

Kevin: Yeah, so first off, I definitely prefer doctors to be direct. Like, I mean, as an adult, you know, I want to be informed if there’s an issue. I don’t really need anything sugarcoated. And I don’t think that has to be delivered bluntly. But you know, if there’s an issue, and there’s action that needs to be taken, I definitely prefer to have that delivered to me. With what Dr. Smith was saying about a tough love and all that, there aren’t many instances I’ve had where a doctor has had to be like that. Only one that comes to mind is when another former doctor of mine — a colleague of Dr. Smith’s — had to get on my case for a while about doing all my Vest treatments and cough assist when I was being lazy about that. But that was an important part of my routine. So sometimes I do need that nudge, particularly when I was younger and more stubborn. But yeah, in general, I definitely prefer to have that delivered directly.