My ventilated life

I’m in a grumpy mood. It’s clearly autumn today, and I love the smell of the air, but it’s dreary outside and my allergies are bad. Inside, I have a meeting this afternoon with the administrator of the home health care agency that manages the nurses who help me. And all the nurses too. The meeting is here in my home with all the people who have to follow me around 24/7, and frankly, I don’t want to see any of them, even the ones I’m especially fond of.

In an old New Mobility article on vents and vent users Barry Corbet writes:

The biggest single problem vent users face is the outrageous cost of their equipment and care. Many who use invasive ventilation need skilled nursing, and paying for 24 hours a day of that can be a nightmare. A few have trained friends, family and unskilled help so well they feel comfortable with a minimum of nursing care.

The care level may not be a matter of choice. Many states mandate skilled nursing for vent users. That annoys those who feel they can get by with cheaper help, and alarms those who fear their essential nursing will be cut by the current enthusiasm for cost containment.

My 24-hour nursing care isn’t a matter of choice. If I get help with the cost, the help is required to be medically trained nurses. I don’t know what level of assistance I’d be comfortable with — what I get now appears to be my only choice other than a nursing home. I do need someone around to help me use the bathroom, to suction my lungs of gunk (because the trach disallows the normal process of clearing one’s throat), and to help reconnect tubes should they suddenly fall apart. Or switch vents or get the external battery if there’s a vent or power failure, respectively.

My big beef with my nursing assistance is that it totally medicalizes my life — my normal life at home where I’m not ill. In the hospital I had my “vitals” (blood pressure, temperature, pulse, etc.) taken twice a day, at the beginning of each 12-hour shift. Here at home, since the vitals are supposed to be written on the time sheets each nurse hands in for pay, I sometimes have them taken three times each day. Any remarks by me that “I feel fine, terrific,” would only be anecdotal to the medical evidence of the vitals they are required to collect.*

There are also nursing notes made about my activities for each day. It’s written down if I took a nap, went to Target, visited with a friend, didn’t want lunch, or cleaned the closet with my Mom. I’m sure there are much more intimate details, but I avoid pissing myself off about it all by not reading the log. I do know that if I whack my shin on something accidently, the bruise will probably be noted in the charts. My mother might also be asked about it as a check against my being abused.

These required procedures that do not contribute to the smooth use of my vent are an invasion of my privacy, and there’s nothing I can do about it. And from what I understand I am not even permitted to contribute to the payment of this care since I’m on both federal and state disability aid. There’s no incremental plan. Either I’m wealthy enough to cover it all, or I’m forced to be poor to keep the government paying for it. And there’s no chance of my covering it all.

Vent user Greg Franzen tells a similar story:

“The way the insurance looks at it,” he says, “you need skilled nursing. I agree with that. But if that’s the case, then they won’t pay for attendants. Now if I get attendants to fill in the non-nursing hours and they do a satisfactory job, will the insurance say that I don’t need skilled nursing anymore? That would be devastating. I don’t know if it’s true — I’m too afraid to ask.”

If he lost his skilled nursing care, would a nursing home become a threat? “Very much so,” he says. “People with vents are very, very vulnerable because of the cost issue. And when we have these Dr. Kevorkians running around, and with a budget crisis, I’m a more attractive target than other people just because of the expense.”

It all adds urgency to the cost issue. “Somehow,” he says with finality, “I need to be able to make enough money to take care of myself.”

Greg might seem well-equipped to do that. He graduated in 1990 from the University of Missouri with a degree in environmental design. The trouble is, Greg says, salaries start at about $15,000 a year. “If I’m going to make $15,000 a year, and my costs are over $80,000 a year, what good is that going to do me?”

So he stays at home. In the meantime, how’s his quality of life? “I think it’s excellent.” What makes it good? “My zeal for life. My love of life.”

Quality of life is a topic of the same series of articles linked above (italics are mine):

A 1992 life satisfaction study by John Bach compared responses by 80 Duchenne muscular dystrophy ventilator users to responses by 273 MDA clinic directors. The clinic directors significantly underestimated the users’ reported life satisfaction. The study concluded that patients who were perceived by physicians to have a poor quality of life were less likely to be offered assisted ventilation.

In a 1992 study by Bach and Campagnolo of 395 ventilator-assisted people who’d had polio, 86 percent reported their lives were characterized by hope, value, freedom and happiness. Forty-two percent of the ventilator users were employed and 39 percent were married. Yet again, the health professionals used for controls underestimated the life satisfaction of people using ventilators and overestimated the difficulties. It was concluded that physicians should be aware of their inability to accurately gauge the life satisfaction of individuals and should not use their perception of poor quality of life as a reason to deny ventilator assistance.

In a 1994 life satisfaction study by Bach and Tilton, 42 ventilator-assisted quads and 45 autonomously breathing quads were compared to a control group of health care professionals. Both groups with spinal cord injury reported higher life satisfaction ratings than were predicted by the controls. Notably, the ratings for those who used ventilators were higher in some areas than for those who didn’t — the former were dissatisfied with sexual function only, whereas the latter were dissatisfied with their jobs, health and sexual functioning. Vent users said life was friendlier, more interesting, more enjoyable, fuller and more hopeful than non-vent users.

A 1992 study by Whiteneck, Charlifue and Frankel of people with spinal cord injury at least 20 years post-injury showed that those using ventilators rated their quality of life higher than those who didn’t, and had a lower rate of suicide ideation.

I can’t explain why vent users are reportedly happier than similarly-disabled nonvent users, but I have no problem believing it’s true. This vent-using life seems to be underestimated in so many ways by people. And over-regulated.

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*Update: The home health care meeting went extremely well. Apparently, residents in nursing homes only have their vitals checked weekly. (!) Because I have some very smart nurses I am now on the institutional plan. Once each week for vitals, except temperature, which is an indicator of infection. W00t!

Crossposted at The Gimp Parade