ATP Series

Positioning & Palliative Care

How Do Seating & Mobility Priorities Change for These Clients?

Positioning & Palliative Care“Your seating considerations completely change.” That’s what Joe McKnight, ATP/SMS, RRTS, VP of clinical development for Access Medical in Carlsbad, Calif., said when asked how the assessment and equipment provision process is different for clients in palliative or hospice care.

McKnight speaks from experience. Access Medical works closely with the University of California, Irvine, Medical Center, whose ALS clinic typically comprises 160 to 180 patients in various stages of the disease. “I see one or two new ALS clients a month,” McKnight says, adding that he recently built a power chair with switch access for a 10-year-old with ALS.

“We can’t do anything more than palliative care at this point.” That’s what Alisa Brownlee, ATP, manager of assistive technology services for the ALS Association’s national office and greater Philadelphia chapter said when asked the same question. “We don’t call it palliative care, but that’s our model.”

While some similarities persist between building a seating & mobility system for, say, a client with spinal cord injury and a client with ALS, many other rehab team goals do change or are influenced by relentlessly progressive diseases such as ALS. In a palliative care situation, the emphasis is on improving quality of life and relieving discomfort, rather than aggressively seeking improvements in condition or function.

In these cases, decisions need to be made about complex technology in the midst of complex clinical conditions — all while keeping the humanity of the client front and center.

Challenge #1: Client Goals Change

When working with ALS clients, McKnight says, “Your seating considerations completely change.” Speaking of ALS clients, he notes, “You know that they’re going to sacral sit. You know that you’re seating them for a whole different consideration. They may not be driving more than 10 or 15 feet between the living room and bedroom, or the living room and bathroom. All you want to do is make sure that they can constantly tilt and change position and that they use those power seating functions for comfort throughout the day, because they’re in that chair for extended periods of time, and they need to be constantly moving. They don’t have muscle control in order to move their bodies, so we’re using those power seating functions in order to achieve some comfort for them.”

While a power chair is typically built to provide mobility, many ALS clients rely on their chairs for much more, Brownlee says: “Some people with ALS end up living out of the chair, meaning they can’t be transferred into a bed, and use the chair for sleeping. This is why most wheelchair evaluators try to get the recline feature covered under insurance. Wheelchairs for people with ALS are not often used for transportation — versus the majority of the disabled population — and are used for weight shifting and comfort as opposed to going out to the community.”

Challenge #2: Balancing Many Goals at Once

A major challenge of working with a client in palliative care is meeting multiple needs with one seating & mobility system.

With ALS patients, McKnight says, “They may be seriously respiratorily compromised. When I was talking to some of the folks at the International Seating Symposium, I was asking, ‘Are you having any luck with bi-angular back systems so I can open up the intercostals, drop the diaphragm, roll those shoulders back, get some air into them?’ Adding even just a little low-flow O2 to some of these patients really makes a difference in their overall cognitive response.”

Brownlee concurs that ALS requires the seating & mobility team to be continuously and quickly responsive: “Because of the progression of the disease, the wheelchair needs to accommodate a changing body: weight loss, BIPAP or vent, and different driving mechanisms. These changes are often rapid and require constant monitoring.”

Challenge #3: Speed Matters

With ALS, but also with some other quickly progressive diseases such as cancer, being able to make complex decisions and follow through efficiently is imperative.

Recalling a recent new ALS patient, McKnight says, “When we took Steven on, he’d had 12 members of his family die from ALS. I took him on in June; he died in October or early November — that rapid. Getting his chair underneath him, getting everything done, getting the insurance considerations: How do you get a chair under an ALS patient that rapidly?

“When you’re dealing with patients that are in hospice or patients that are dealing with end-of-life issues, your payor source suddenly becomes vitally important. You don’t have your traditional 90 to 120 days to mess around with getting paperwork back from the doctor and getting everything done to get a chair underneath your patient. You don’t have that window. It’s got to happen yesterday.”

Challenge #4: Complex Technology Comes at a Trying Time

While racing against a progressive disease can be difficult for the ATP, OT or PT trying to secure the right equipment for a client, Brownlee says psychosocial issues can be just as challenging.

“All these devices are new, overwhelming and represent a visual/physical manifestation of the disease,” she points out. “This differs from those born with a disability that approach assistive technology as an extension of themselves. It’s important to understand this distinction. People with ALS often put off, until the very last moment, obtaining a wheelchair.”

The strain extends to caregivers, as well. “Once they’re on hospice and they’re coming to end of life, the costs and the financial burdens are horrendous,” McKnight says. “They’re often not living in a big, beautiful mansion with lots of space. They’ve got a hospital bed, a ventilator, an IV pump and all this other stuff in the room. And I come in with a chair that’s 26.5" wide and 35.5" long and I want to put a ventilator on the end and all the bells, whistles and wires. And we’ve got to put a Hoyer lift in there. It’s a lot of stuff in the barn.

“We’ve collapsed a lot of tolerances, and emotionally and spiritually, [caregivers] are often very, very challenged. It’s important to remember that you’re dealing with a population that is sometimes at their breaking point emotionally and spiritually. Sometimes even intellectually, you’re trying to impose technologies on them that are a little bit beyond where they are.”

Suggestion #1: Prepare for & Expect Change

With progressive diseases such as ALS, clients’ conditions will change. The best a seating & mobility team can do is to prepare for it — and that starts with education.

“Prior to any consideration of ordering a wheelchair for a person with ALS, the therapist must know the Forced Vital Capacity (FVC) of the [client],” Brownlee says. “FVC is a breathing test to help determine the strength of the breathing muscles. A person with ALS and their medical team make medical decisions based on that number. The current criteria for a person with ALS to enter hospice is 40 percent or lower VC. If a therapist is recommending a wheelchair and the person with ALS has a VC of 20 percent, is the physician going to recommend hospice? If so and the patient signs on, they are not eligible for a wheelchair from insurance.

“Or say for example a doctor sees a patient with a VC of 30 percent and does not order hospice, but in the next few months before the wheelchair is delivered, the patient’s respiratory functions decline to the point where they need hospice ASAP. If they sign on, there will be no wheelchair delivery, and in the worst-case scenario, the wheelchair vendor is financially responsible for the chair.”

Another ALS example involves increasing loss of function that requires a change to alternate driving controls — which aren’t funded by insurance once a patient agrees to hospice. “When they’re at 30 to 40 percent [FVC], they’re losing hand function and can’t operate the tilt-in-space function anymore, and they want to,” Brownlee says. “But we’re stuck.”

Communication from the beginning is vital.

“The average VC of 40 percent or lower enables a person with ALS to sign onto hospice,” Brownlee says. “Some well-meaning primary care physicians will sign them on before that percent, thinking they would get more support services, which is often not true. That means [patients] are not eligible for wheelchairs or communications devices. It is our hope that people with ALS, caregivers and therapists that work with them communicate with the medical team before any discussion of hospice takes place. People with ALS and their families don’t understand the impact of this discussion regarding DME coverage.”

Along those lines, Brownlee recommends informing patients that Medicare “only covers one wheelchair every five years. It’s important to educate families: If they use that allotment for a manual wheelchair or scooter, they will not get a power wheelchair from insurance.” It’s a critical point, Brownlee adds, because many patients and families gravitate toward equipment that looks less clinical.

“The most important person who has to understand all this is the consumer,” Brownlee says. “And in my experience, the most prominent person who doesn’t understand this is the consumer. It’s too overwhelming.”

As for avoiding a scenario in which a wheelchair becomes useless as the patient progresses, Brownlee says, “The therapists that we use and the seating specialists will work really closely with [the wheelchair provider] to get the chair that someone needs from the beginning, that can transition with the disease.”

Suggestion #2: Identify What’s Most Important

Accessing their communities and workplaces, or even some parts of their homes, may no longer be possible for patients in later stages of their diseases. But even as their world gets smaller, McKnight says it’s important to find out what the patient’s priorities are.

“We’re using the assistive technology functions in terms of Bluetooth and infrared,” he notes, “to appreciate the things that they need to do around their home, like maybe turn on and off lights or change the TV channels so that they’re not constantly burdening their caregiver to say, ‘Now I want to watch Fox News,’ and ‘Now I want to watch the sports channel.’

“Much of our concepts surrounding the client’s need for functional driving or propulsion are often secondary. I may very well be building them a big lounge chair that supports their daily needs and makes them functional and comfortable. Keeping them in good spinal alignment is secondary or at least lower on the list of priorities unless it compromises respiratory function, bowel/bladder function, etc.”

As Brownlee mentioned, a power chair may be where an ALS client spends the most time. “The majority of our folks end up living out of that wheelchair,” she says. “I can’t tell you another disease where that might happen. People don’t have a Hoyer lift, or they refuse them — they don’t like that feeling of being in space. The house won’t accommodate a Hoyer lift. They can’t move a bedroom to the first floor. So they end up living out of their wheelchair and using a commode because they can’t get upstairs.

“As the disease progresses, you need a two- to three-person transfer, and we don’t have a healthcare system that pays for home-health aides to do that. So they can’t transfer anymore. And their choices would be: Do I want to stay in my hospital bed, or do I want to stay in my wheelchair? The bottom line is if you stay in the wheelchair, at least we can weight-shift you.”

Suggestion #3: Look for Ways to Save Time

Efficiency is key for working with palliative care and hospice patients, and finding manufacturers who can expedite their services can help ATPs to shave precious time from the delivery model.

“Permobil and Quantum Rehab in particular are amazing at being able to say, ‘It’s an ALS patient, it goes right to the front of the line,’” McKnight says. “‘This chair will be built today and it will ship tomorrow and you will have it.’ Or the reps will just say, ‘I’ve got a brand-new demo that just arrived yesterday morning. Let’s put this chair together.’ We turn around and we build the chair right there.”

Suggestion #4: Keep the Client in the Center

An ALS diagnosis is doubly difficult, because of the prognosis and the potentially rapid progression that doesn’t give patients and families much time to come to terms with it.

Brownlee notes that when losing mobility and when losing the ability to communicate, “You have to go through the loss cycle. It’s like the grief cycle. But we tell our client, ‘I’m sorry, we don’t have time for that. We don’t have time for you to cope.’ We had somebody in clinic last week who said, ‘I’ve fallen 12 times.’ We said, ‘We think you really need a wheelchair,’ and he said, ‘No, that won’t work in my lifestyle.’”

A suddenly acquired, swiftly progressive disease leaves little time for the patient to absorb his/her new situation — so McKnight mentally prepares to explain, for instance, how to use a seating function multiple times before a client or caregiver will learn it.

“We have to be very patient and understand that we’re going to be going out [to patients’ homes] again and again,” he says. If a family member or hired caregiver speaks a primary language other than your own, finding a translator early in the process can help to reduce learning curves and frustration levels across the board.

Beyond that, McKnight says that regardless of what clients are experiencing within the healthcare system, he works hard to continually regard them first as people rather than first as patients.

“Remember that you’re dealing with a human being, and all control has been removed from them,” he says. “This is a person who has been autonomous their entire life, and particularly in my patient populace, ALS seems to affect the best, the brightest, the most generous, the most caring. They’re now a patient population that is being addressed in the third person, and they’re being addressed as a disease. And we need to remember to address them as John or Sue, and look them in the eye, and ask them what’s important to them.”

McKnight says working with ALS clients “is a big privilege,” despite the many challenges they face. He feels the same way about patients in palliative care in general. “I’m going to see a kid this afternoon who’s a cancer patient,” McKnight says. “He’s 22 years old and a full hemi-pelvectomy. He’s got his right iliac crest and that’s it; the sacrum’s gone, the entire left ilium, the entire left leg, the ischials are gone. And he’s on everything from methadone to marijuana to try to treat his pain levels. That becomes a very interesting seating situation, to try to manage all of that.”

This article originally appeared in the May 2015 issue of Mobility Management.

In Support of Upper-Extremity Positioning