ATP Series

CRT & Palliative Care

The Role of Seating in Improving Quality of Life for Consumers & Caregivers

sweater with a cup of cocoa


It’s an infamous, if perhaps overly simplified, mantra that when it comes to Complex Rehab Technology (CRT) reimbursement, Funding sources don’t pay for comfort. And CRT is, by definition, medically necessary equipment.

But when people who use CRT are also receiving palliative care, can complex seating, positioning, and mobility help to meet those goals as well?

Defining Palliative Care

Palliative care is often talked about in tandem with hospice care — but the two are very different. The National Institute on Aging (NIA) defines hospice care as focusing “on the care, comfort, and quality of life of a person with a serious illness who is approaching the end of life. … In hospice, attempts to cure the person’s illness are stopped.” A hospice patient’s life expectancy is six months or less, the NIA said.

In contrast, palliative care “is meant to enhance a person’s current care by focusing on quality of life for them and their family” and can be given alongside “medical care for their symptoms… along with treatment intended to cure their serious illness.” The NIA adds that palliative care “is a resource for anyone living with a serious illness.”

That includes the population commonly served by CRT seating and wheeled mobility teams. For example, a 2018 report in Hospice & Palliative Medicine International Journal, entitled “Pediatric Palliative Care: How Early Should [It] Be Planned?”, said, “Children with cerebral palsy and other neurologic conditions benefit from being referred to palliative care as soon as [the] diagnosis is made.”

Improving quality of life can take on many forms. Johns Hopkins Medicine’s Neurology and Neurosurgery department has an ALS and spinal cord injury palliative care project that aims to make gaming more accessible. “The mission of this software and hardware is to provide patients suffering from limb paralysis, but who still possess residual movements (ocular, finger), with games that map their movement onto a world of rich motor dynamics and physics. Ideally, we wish to project a patient’s residual movement into the fully dynamic movement space of a creature or vehicle. This is intended to give them back the visceral and pleasurable feeling of acceleration, velocity and skilled movement.”

A Palliative Care Role for CRT

So if adaptive gaming can be part of palliative care, what role can CRT play in “focusing on quality of life for them and their family,” per NIA’s definition?

Brad Peterson is VP of Sales for Amylior, manufacturer of complex powered seating and power wheelchairs.

“We’ve talked about comfort and how important it is, no matter how you define it,” he said. “I think it’s pretty simple: Someone who’s not comfortable is going to move themselves however they can to a position of comfort. Or they’re simply not going to use the technology that you’re trying to get them to help them be more functional and independent.

“Furthermore, a caregiver who’s dealing with someone at the end stages of a chronic long-term serious disease who’s in palliative care — they’re probably not going to transfer their loved one into technology that feels uncomfortable or that makes the loved one say, ‘I really don’t want to get in this chair, I’m super uncomfortable, I’d rather stay in bed today.’”

And while Peterson acknowledged the Funding sources don’t pay for comfort premise, he contended that comfort is, practically speaking, still critical. “There are all kinds of ways you can subjectively look at comfort. But I think comfort is important because it is a linchpin to many of the other things we’re trying to do functionally, with a seating and positioning and a power mobility or manual mobility assessment.

“We want people to be functional, independent, safe from pressure injuries, all these things that we talk about in seating. But if they’re not comfortable, you’re not going to get those outcomes that you’re looking for. I’m a firm believer in that and I’ve seen it.”

The Effects of Discomfort

Anyone who’s been stuck in the middle seat of a long-haul flight — or even just tried to sit in a hotel ballroom chair for a long PowerPoint presentation — knows how discomfort can creep in and disrupt. If you’re able to fidget, shift your weight, stand, reposition yourself, you do — a lot. But what if you can’t?

“Maybe you tell your caregiver, ‘Just put this pillow on top of this [wheelchair] cushion,’” Peterson said. “That’s something that,
as we know, can lead to secondary complications and issues with positioning and pressure.”

And seating that isn’t quite right can become more serious an issue as the person’s condition progresses. “As you look at the progression of something like ALS, MS [multiple sclerosis], anything like that,” Peterson said, “comfort really is hugely important because they’re going to be spending more and more time in a chair or in a bed. I just think they have to be comfortable for quality of life.”

Strategies to Consider

Noting that able-bodied people move not just back to front, but also side to side to get comfortable, Peterson said lateral tilt on a power chair can be helpful. As a long-time powered seating specialist, he noted, “We saw a lot of success with lateral tilt with people who were end-stage MS or folks who had long-term spinal cord injuries, who had a lot of pain. They’ve moved so many different ways with [posterior] tilt and recline. But bringing in a different axis of movement really helped them unweight or change the way their body moved.

“We rock from side to side, we tilt and recline back, we put our feet up. We don’t just move in one axis. We don’t just open up our hips and raise our feet. There are a lot of different movements that we do. And I’m a strong proponent of that.”

Providing powered seating users with the ability to reposition themselves, even if they’re no longer driving their power chair much, can improve quality of life, Peterson added. “Even if you’re at the end or towards the end of a progressive condition, you still want to do things yourself. You don’t want to have to ask your loved one. You don’t want to have to ask a caregiver. You don’t want to have to wait for someone to come in the room. You may have difficulty in communication. You might be nonverbal. It’s tough for you to be able to say, ‘Hey, I need my head back five degrees.’ Whereas if you can do it yourself, whether it be by a breath or by a tap of a microlight switch or by an eye gaze or something like that — you can still move yourself. That’s hugely impactful in terms of self-esteem, independence, comfort, and just overall function.”

As repositioning is difficult for these clients — “It’s much more difficult for many of our folks to fight against gravity like you and I do all the time,” Peterson pointed out — helping them to maintain their optimal position in the first place is critical.

“A lot of times, [comfort] doesn’t come down to just one thing,” Peterson explained. “It’s not just a good cushion. It’s not just tilt and recline. It’s having every aspect or every part of the chair working together to provide that overall experience. You can do whatever you want to up top, but if you put it on a mobility base, manual or power, that doesn’t take into account their environment and how they’re driving and where they’re driving…? They’re going to move, and it’s going to compromise their posture.”

That means examining the wheelchair’s suspension and its ability to help its rider to maintain the best possible position. “Anything you can do to lessen the shock and the vibration coming from the ground before it gets to them, I think, will allow you to have better outcomes with everything you’re trying to do. And it’s not always the big curb [that moves people out of position]. It’s not always the rocks. It’s the constant repetitive cobblestone, bricks, [vibrations] that always are just going right up to the body. And they’re doing things in a micro or small way to maintain their posture or adjust their position to stay upright, and that fatigues them very quickly.”

The results can definitely impact their ability to operate their chairs. “They slide down the chair. The head array is farther away. The [sip-and-puff] straw is farther away. Even those basic abilities to access their drive controls [are compromised]. And what is it doing internally? It’s making it hard for them to breathe if they’re collapsing, if their diaphragm isn’t able to move as freely. It may make it more difficult to swallow because of the posture that they’re in. So there are all kinds of little things that the vibration and the environment do over time or over the course of the day that we may not see, but they’re feeling or experiencing.”

Considering Their Caregivers

Peterson also noted that caregivers need to be included in palliative care conversations. “From a caregiver standpoint, whether that caregiver is a loved one or an aide, physically it’s very taxing to do transfers,” he said. “The more you transfer, the more opportunities there are for problems to occur: falls, drops, skin being brushed against surfaces to cause pressure.”

Many ALS patients eventually prefer to sleep in their power chairs rather than transfer to bed. “I think for someone with ALS who may be on a ventilator, that transfer and worrying about what’s going on with your ventilator has got to be incredibly stressful,” Peterson said. “Is it ideal that people sleep in their chairs? No, it’s not. But [maybe] that’s where they are, and they’re comfortable and they’re safe. It gives everybody a little bit of calm and peace of mind.

“I think we really have to look at caregivers because they go through a lot that we don’t necessarily understand. Anything we can do to make the consumer more comfortable overall will give you a better long-term experience or long-term outcome. Think about what the family is going through already.”

This article originally appeared in the issue of .

In Support of Upper-Extremity Positioning