‘What we’re here for’

ALS Clinic a good example of transitioning to telehealth, hybrid practices

By Ryan Clark

CHS Communications Director

Meet Debra Suiter, director of the UK Voice and Swallow Clinic, as well as a professor in the Department of Communication Sciences and Disorders.

For the past seven and a half years, Suiter, PhD, CCC-SLP, BCS-S, F-ASHA, has been working in administration, as well as teaching, seeing patients and engaging in research here at UK.

“I get to do a little bit of everything,” she says. That also includes working with patients in UK’s Amyotrophic Lateral Sclerosis, or ALS, Clinic. In fact, Suiter was dabbling in telehealth before it was ever really in-demand — as it has become after the COVID-19 pandemic. And she was using telehealth to help those who live far away, or may be struggling to get to their appointments.

For patients and caregivers who are going through an unimaginable disease like ALS, anything that gives them even the slightest sense of comfort helps a lot, Suiter says.

The ALS Clinic stands out as an example of transitioning, not only to a telehealth model during COVID-19, but also to their current hybrid model, which incorporates both telehealth and face-to-face appointments.

As we wrap up our coverage of Telehealth Awareness Week, let’s chat with Debra Suiter, where we learn how telehealth helps the patient, as well as the clinician.

Here’s 5 Questions with … Debra Suiter:

1. How long have you been practicing telehealth?

I have actually been doing a form of telehealth even prior to the pandemic with our patients with ALS. A lot of these patients are coming from three and four hours away to come to clinic, so they're exhausted. I recognized even before COVID, it wasn't fair to ask these patients to come back for an appointment that ended up not taking very long. And it makes more sense to do the evaluation in their home (using telehealth).

2. And for folks who may not know, can you define ALS?

Sure. It's Amyotrophic Lateral Sclerosis, also called Lou Gehrig's disease. It is a neurodegenerative disease that basically results in complete loss of physical function of the body. So it affects breathing, it affects swallowing, it affects speech, it affects the ability to walk, and it's a really devastating disease. It's a fatal disease, there is no cure. They say the typical lifespan for it is two to five years from diagnosis.

A lot of our patients — I mean, that's really part of what we've always been told — the really cruel part of this disease is most of our patients don't end up with significant cognitive issues as a result. So they're fully aware. They basically become locked in their bodies. And, and usually, the cause of death with them is respiratory failure.

3. So you were already ahead of the game when it came to transitioning to telehealth during COVID-19?

Correct. So many of these patients are so physically debilitated and have really significant respiratory issues, we were really worried about bringing them back into a clinical situation where we might be putting them at risk, having them around people who have COVID. We have been back in person for a few months, but, because telehealth works so well, we’ve continued to use it for some patients.

There were kinks — we didn't understand breakout rooms when we first started. But it worked out. It was a really nice transition.

4. So is the transition to telehealth and hybrid actually easier for you as the clinician as well?

It definitely was easier for us. When we switched to tele, we certainly were more efficient. We were able to see more patients. The other thing is our patients aren't exhausted when we’re seeing them. So we were actually seeing patients who were functioning more optimally, because they hadn't just driven here for three or four hours. We were seeing them in their homes. It goes back to this whole idea of access. Some of our patients find it so difficult to get here. Some don’t have the gas money. Some don’t have the time. There's such a need for access to services, it’s just unconscionable to me for them not to get them. I think tele is going to open things up a lot — it already has opened things up a lot.

5. Being able to give these patients and caregivers any relief at all — that seems to be a very satisfying thing to do.

That's the whole focus of the clinic — that's what we're trying to do. But yeah, the fact that these patients become completely dependent on their caregivers for everything — feeding, mobility — if they're in a power wheelchair, it's a huge, huge ordeal for the caregiver to try to get the patient here. If our patients are on a feeding tube then you can't do that very easily in the car so patients are hungry by the time they get here.

So yeah, we’ve heard from the caregivers and we’ve heard from from patients that doing this by tele, most of them really liked it. Care delivered via teletherapy is supposed to be “At least as good, if not better” than the care that you would receive in person. I think we definitely are able to deliver that.

I think our ALS clinic team is the best example of a of a multidisciplinary team that I have ever worked with, and I've been a speech pathologist for almost 30 years. We work collectively, because I mean, these patients, they don't have just one issue.

We are very tight knit group. ALS is a horrible disease. But it is my absolute favorite patient population to work with. It's not all happy, but we're there helping people problem-solve what is ultimately going to be a fatal disease. And if we can do anything, as you mentioned earlier, to make their quality of life better for them and for their caregiver, then that gives me satisfaction as a clinician.

That's what we're here for.