SCOTT SIMON, HOST:
A new investigation finds there're wide flaws and gaps in how we care for those who cannot breathe on their own. Jordan Rau with our reporting partner KFF Health News joins us now with news of the investigation into how difficult everyday survival can be for people who need a ventilator. Thanks for being with us, Jordan.
JORDAN RAU: Glad to be here.
SIMON: Remind us why a person might need a mechanical ventilator to breathe.
RAU: Well, a lot of people are aware that you might need one, say, for a short time, say after COVID or for pneumonia. But there are thousands of people that need them for life to live. One of the main reasons is if you have ALS or MS, both of which are neuromuscular diseases that atrophy the muscles and the nerves that allow you to breathe. People who have strokes sometimes can't breathe and have to be on a ventilator. And people who have spinal cord injuries, you know, have a terrible bike accident or car accident - or, you know, one of the people that we profiled in our story was just walking down the street and tripped on his own feet and is a quadriplegic. So not to be histrionic, but you can be, one shoelace away from needing one.
SIMON: How hard has it been for them to find ventilators?
RAU: It's very hard to get not just the ventilators, but also the 24-hour care that you need if you're reliant on them. Very few nursing homes actually have them, and even fewer specialize in them. There's about 15 states that don't have any nursing homes with vent wards. One of the people that we wrote about ended up getting ALS, and he lived in Missouri. Over a course of a year, he had to be at two nursing homes outside of the state, far away from his family, pay $50,000 of his own money to be in a long-term care hospital for a couple of weeks, ended up going back home. That didn't work out. By the time he died, you know, he was in hospice. But, you know, ALS is a terrible fatal disease, and the fact that people can't spend their last couple of years in some sort of comfort and with good medical care is really atrocious.
SIMON: And what about people who would like to try and stay in their homes for as long as possible?
RAU: Well, most people do want to stay in their homes if they can. There are a couple of problems and challenges with our health care system and particularly with our lack of good long-term care supports. The first is that a lot of insurers won't pay for a ventilator, or at least the advanced ventilators that people need. And these are machines that cost about $10,000 each. They're really sophisticated. They can do things like simulate a cough to make you clear your throat if you can't do that on your own. They come with portable power, so you're not tethered, you know, to an electric outlet. But a lot of insurers have fail-first policies that say, basically, you've got to start with the equivalent of a CPAP machine, you know, sleep apnea machine, and sort of show that that's not working for you, and, you know, you're on the verge of suffocating before you win your appeals.
SIMON: Fail-first sounds incredibly cruel. Couldn't somebody die from that kind of requirement?
RAU: They can suffocate, and they can die. I mean, you're - if you have ALS, within a couple of months, your breathing can drop from 70% of capacity to 50%. And, you know, one of the people that we wrote about was appealing twice before they got their equipment. So yes, it's very difficult. A lot of the insurer rules just aren't specific enough for different diseases.
SIMON: Are there spots in the country where people can get ventilators more easily?
RAU: There are some states that are better at providing one at home just because of their Medicaid rules. And then there are a couple of facilities that actually do a fantastic job of taking care of all aspects of people who need to be on ventilators for life. I went to visit the Leonard Florence Center, which is a pretty renowned one up in Boston, and it's incredibly impressive. I mean, because not only do they have top notch ventilator respiratory therapists. Every person, along with their wheelchair, has got a - like, an iPad on it, and it can read your eyes or your mouth, if that's the only thing you can communicate with. And you can, you know, use it to call the elevator, to adjust your shades, to change your TV station. So they have a degree of independence. That model is just so much superior to a lot of the standard nursing homes, where you're basically bedridden. And that's one of the biggest tragedies of all of this, is that we do have examples of how to do this in a more humane and safer way for people, and it's just not been replicated.
SIMON: Jordan Rau with our partner KFF Health News. Thank you so much for being with us.
RAU: So glad to be here. Thanks.
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