Q&A: Giving ventilated patients outdoor activity opportunities

Patients requiring respiratory support often do not have opportunities to participate in outdoor sports/activities, according to a presentation at the American Thoracic Society International Conference.

However, the TRAILS (Technology Recreation Access Independence Lifestyle Sports) program of The University of Utah Health Craig H. Neilsen Rehabilitation Hospital is changing that. This program is designed to help patients with disabilities get outside and enjoy activities such as skiing and boating, while also considering how to conduct the activity safely according to each patient’s condition.

Healio spoke with Jeanette Brown, MD, PhD, associate professor in the division of pulmonary and critical care at The University of Utah, to learn more about TRAILS, how patients actively participate in outdoor activities and the safety procedures that accompany these activities.

Healio: What inspired the creation of TRAILS?

Brown: Part of TRAILS is linked to the Brian McKenna TetraSki Express. Brian McKenna was a younger guy and in very typical Utah fashion, was injured doing an active outdoor sport. He was a thriving person with a great community around him and thought, I don’t want to give that up after having a devastating injury. He was not ventilator dependent, but he worked with Jeffrey P. Rosenbluth, MD, medical director of the spinal cord injury acute rehabilitation program at the University of Utah Health Sciences Center, and some engineers to push the development of the TetraSki itself from an engineering mechanical component. This really inspired us to think more about the “what is possible?” concept, and TRAILS has perfected that over the years.

I got involved in TRAILS because Rosenbluth and I share patients; he’s a physical medicine and rehabilitation physician and I’m a pulmonary and critical care physician, so we share a lot of high-level quadriplegic patients that require respiratory support of some flavor. Some patients are on noninvasive ventilator support, and some are fully trached and vented. One of our patients really wanted to go skiing and Rosenbluth asked me, “Do you think this would be possible?” At first, I thought, “Not when spit and snot freezes.” Also, when I looked at the technical specs of the ventilator that we use, it’s rated to 42°F, and the mountain is not 42°. However, I thought this could be interesting, so the challenge was accepted. One of my struggles being an ICU doctor sometimes is thinking did we save someone to leave them stuck in a facility somewhere doing nothing for the rest of their lives other than watching daytime TV? A lot of my patients are young with various kinds of injuries, and some of my patients are older but are still running to be a part of activities. These patients were the major driver for us to do some research and development into figuring out logistically, what can we do? How can we do this safely because we don’t want to hurt anybody. We came up with disaster scenarios, such as if this emergency happens, we’re going to do X here, and if this emergency happens, we’re going to do Y. We really developed that over time working with our individual patients.

A lot of this program was based on the push we received from our patients. They were the ones who really wanted to do it. One of the most rewarding factors for me is watching some of these patients I’ve known since their injury light up when they’re out doing either boating or skiing. You get to see a side of them that you don’t often get to see otherwise.

Healio: Who is invited to participate in this program? What types of patients have already participated?

Brown: We can take pediatric patients all the way through adults. There are some size limitations, but we typically do a fitting in our garage first to make sure the patient fits. We have done some seat adjustments for certain patients, depending on their dynamics, so that’s part of that site safety checklist of determining who is eligible. The program is free because of the grant support that we have, so the patients or families don’t get charged. We are volunteers, so a lot of it is just designating when they want to go. Right now, we’re the only site in Utah that has worked with high-level ventilatory needing patients.

Some of my patients with high-level spinal cord injuries are trach intubated. I do have other patients, such as my patients with ALS or patients with muscular dystrophy, that started out with lower-level ventilation needs, meaning just at night, but have progressed to needing ventilatory support during the daytime. They usually do that through mouthpiece ventilation, or sip and puff. For some of these specific patients, we’ll switch them to a nasal mask while they’re skiing so that they don’t have to control things with their mouth. It also depends on the amount of support they require on a regular basis. I have some patients that can go off vent most of the day, so they just need a little support, whereas some of my patients can’t be off for more than 2 minutes. Knowing a patient’s level of ventilator dependency is part of our safety briefing that occurs before the activity.

For us, a lot of the program is adapting and making sure that patients have their respiratory needs met when they’re participating in the activities.

Healio: One of the activities TRAILS offers is skiing. Could you explain how the patient is able to actively participate in this activity?

Brown: The key behind this activity is that this isn’t just the patient going for a ride. They are controlling the ski. If the patient for whatever reason can’t always control it, we have a backup, but if they want to fully control the ski, that’s what they’re doing.

There are two options for them to control the ski depending on their level of functionality. If they have hand motion capacity, then they can use a joystick. If they are a high-level quad and don’t have that, then we come back to that mouthpiece control, which is truly sip and puff. For example, to turn right, you suck on the straw. If you want to turn left, you puff.

For safety, we always have someone tethered and there’s a kill switch/remote control held by the person in the back. We also have two flanking skiers/snowboarders, one of which is a respiratory support staff. These people serve two functions. One, if we have an emergency on the mountain, they are there to help. And two, they keep other skiers/boarders from cutting between if they do not see the rope. We typically never have a problem with that, but an out-of-control skier/boarder in that space is always a potential.

Healio: Since safety is of the utmost importance, what are some respiratory concerns you look out for when conducting skiing with patients?

Brown: With the puffing and sucking, saliva will end up in that tube that they are using to control it. This means that sometimes the ski can misread cues, so you have to be aware of that for the patients using that setup. The other thing is when you’re talking about cold air in the context of respiratory patients, the first thing that comes to mind is bronchospasm. The ventilator we use actually has a nebulizer built into it, and we bring albuterol with us in case somebody suddenly can’t breathe. This has not happened to us so far, but that is a concern.

The other thing is that the tubing that’s delivering the air and support to the patient is carrying heated, humidified air. If it is exposed to cold air on the outside, it’s going to condense the moisture on the inside and do basically what we affectionately refer to as rain out. To work around this, we wrap the tubing with fabric to insulate, so that the air that’s actually delivered to the patient is warm and moist like it should be. We have ways to insulate a ventilator as well since you can’t block it off completely because there has to be air intake and you have to keep the ventilator from being too cold. Battery life decreases when things are cold, so that is another factor because these are all battery-run ventilators. We have two backup ventilators, and these all have swappable batteries, so we have three extra batteries on top of the two extra devices. It’s just redundancy in case something goes south.

The other extra equipment includes oxygen since we are at altitude. Most of our resorts are around 5,000 ft to 6,000 ft up depending on the location, so oxygen-dependent patients need more oxygen. The ventilator we use can make oxygen, it has oxygen condenser in it, but the issue is that will run the battery faster. As a backup safety, we have a carbon fiber oxygen tank, which is what they use for mountain climbing. They’re super light, and this helps whoever is carrying the O₂ tank because previously we had the steel one in a backpack. We have a better setup now. That tank is a lot lighter, carries more oxygen and is in a backpack.

We also have Ambu bags and spare trach setups in case somebody’s trach malfunctions. Everything is basically redundant. Additionally, we’ve practiced how we would bag a patient on the ski, for example, if their ventilator failed or if we had to wait for someone to bring supplies.

Healio: What other activities does TRAILS offer to patients?

Brown: TRAILS also offers boating. Because we had such a major snow year in Utah, we have a lot of runoff and really cold water. The good news is our reservoirs are not like small puddles anymore. Additionally, the cool thing about the boat is that it can be a family thing.

The boat is similar to the ski in how it is operated by the patient through either a joystick or a mouthpiece. They can unfurl the sail. They can go right or left, fast or slow. This activity usually involves TRAILS staff plus respiratory staff if the patient has respiratory needs. We do a safety huddle in front of the patient so that they can also contribute if there’s any questions or concerns. During this we make sure we have all the equipment and ask the patient if they’ve been having any issues.

For both skiing and boating, the weather must be good. Quadriplegic patients can have problems with temperature regulation, so that’s another thing to consider when patients come up. You can’t pick a blizzard day. You have to have a bluebird snow day for skiing or a day where the temperature is not too hot for boating. The other thing to consider is the possibility of ventilators overheating, which has not happened in boating but has happened when patients are in vans.

Healio: Even though this program is a part of The University of Utah Health Craig H. Neilsen Rehabilitation Hospital, TRAILS has expanded into other areas of the world. Where has the program been conducted, and what places does the program hope to travel to in the future?

Brown: From a respiratory standpoint, the major areas for TRAILS so far have been at resorts in Utah. That’s because the program originated here, and Rosenbluth and I are both here. However, Rosenbluth has gone to a number of places around the U.S., Canada and overseas with the ski itself. This is building a lot of interest, so the next step is being able to figure out if we have volunteers go to patients or if patients want to travel to us. I just recently saw that there is testing being done for a new adaptable chair on airlines for motorized wheelchairs. Currently, these patients have to get out of their motorized wheelchair, and transferring is a nightmare for a lot of these patients, so most of them don’t fly. With this new chair, they back up their wheelchair and walk it in place, so they don’t have to get out of their chair. This may mean that patients will want to travel more. In the next 18 months, that might be a real thing. This demonstrates a fun thing about technology with it opening up options for patients that otherwise would never have had this.

Healio: What is your goal as a clinician, especially in regard to patients who are ventilated?

Brown: I am an ICU doctor and am often in that scenario where people are asking me, “Should I keep my loved one alive?” A lot of those questions are framed by asking what they would want. It is substituted judgment. For example, you have somebody who is super athletic and out doing tons of stuff, and now we’re talking about what they’re not able to do after their injury. I think we are really changing that paradigm. The activities offered by TRAILS change those conversations and goals of care. Not everybody’s going to want to do it, and that’s totally fine. But now we can offer these things to people who really want to be out, active and try something new.

Additionally, I do a lot of pediatric-to-adult transitions, so we have a ton of kids who had all sorts of things, including a lot of congenital issues and maybe are wheelchair bound. If you have higher level needs, you’ve not typically been able to participate in a lot of these adaptive sports activities, so we are sort of pushing the envelope. You don’t want pediatric or adult patients to be isolated or feel left out of activities, so this is a way that we can start including them.

Reference:

• The Brain Mckenna TetraSki Express. https://www.tetraskiexpress.us/.

For more information:

For those interested in the TRAILS program, please contact them through their website here.

Jeanette Brown, MD, PhD, can be reached at jeanette.brown@hsc.utah.edu.