© 2008 Stu Nicholls - stunicholls.com
When a Vent and Trach is Better Than BiPAP
When neuromuscular disease weakens the muscles used for breathing, many people benefit greatly from noninvasive ventilation (NIV), which can add years of breathing support. But when a ventilator and tracheostomy are suggested for better breathing, some people see NIV as “enough” and a vent and trach as “too much.” When a person’s overall quality of life is no longer acceptable, that’s certainly a valid choice. But a trach and vent shouldn’t be ruled out if quality of life problems are due in large part to respiratory problems!
Why Switch from NIV?
NIV assists breathing through face masks, nasal plugs or tubes to “sip” air, without the need for surgery. So why would anyone even consider going to a trach tube?
NIV can prove inadequate for a variety of reasons:
- Facial features such as a crooked nose or a deviated septum can make finding a mask that doesn't leak or breathing entirely through the nose difficult and very frustrating. Although most masks are adjustable and therefore called "customized", truly custom made (molded) masks are now available. Most insurance limits the number of masks per year making finding the right one expensive, and insurance may not cover a custom made one. Adding to the problem is that the facial contours change significantly with weight loss or gain and development of facial weakness.
- NIV may aggravate sinus problems and lead to chronic sinus infection.
- For some people, NIV pushes air into the stomach and causes very uncomfortable abdominal distension.
- Some find anything on the face claustrophobic.
- Facial weakness reduces necessary jaw closure and ability to use a mouthpiece or mask.
- It can take months to find the right settings and mask or device and get used to NIV, so if knowledgeable support or strong motivation is lacking, NIV probably won't work out.
- When BiPAP use extends into daytime use, going out becomes more difficult because of equipment needs, although BiPAP units are being changed to be more portable. Wearing the mask in public is unacceptable to most users because of the headgear. Nasal plugs still require headgear -- they aren't the simple tube worn by oxygen users. NIV headgear definitely looks more &# 8220;Star Wars” bizarre than “Top Gun” cool. Although a sip tube is much better in that respect, its use is limited because the patient must be able to form a seal around the tube and suck strongly enough to trigger the machine to deliver a breath.
- Ventilators have an alarm system which a BiPAP machine may not have.
- Portablility. BiPAP machines are just now catching up with ventilators in terms of size and portable power supply.
- Using a ventilator for BiPAP greatly eases the transition to full ventilation if that is being considered. Familiarity with the machine goes a long way even though the settings are different.
- The most common reason for switching, however, is that after successfully using NIV for some time, a person’s breathing muscles weaken further. Several symptoms show that this is occurring, such as:
- Frightening spells of suffocating or choking congestion caused by thick mucus and a poor cough. Breath stacking, manual cough assistance or a CoughAssist device work very well for some, but others find these methods minimally effective. The inability to clear congestion is exhausting, frustrating, and dangerous. A trach solves this problem
- The hours the person needs to use NIV increase from overnight to most of the day.
- Because NIV can only assist breathing, as a person’s breathing capacity deteriorates, he or she slides back into the fatigue, poor appetite and anxiety of pre-NIV days.
- Pneumonia or a simple chest cold results in a respiratory crisis. The additional settings available on a ventilator may be needed and the ability to remove secretions is critical. At this point a trach is generally more effective than CoughAssist.
Why the Resistance to a Breathing Upgrade?
One problem is, as so often the case, cost. Because a ventilator is capable of more than just delivering BiPAP, it is more expensive. For this reason most people are limited to a BiPAP machine until the switch to full ventilation is required. Cost is certainly a factor but it is hard to discuss cost because insurance coverage varies drastically. Some people have complete coverage, others have sizable copay. The best I can do is give you my cost. (Remember, this is my cost and every equipment supplier and insurance is different!)
I am on Medicare and have a Medicare supplement policy. The vent rental and maintenance is billed at $1990 per month. Medicare allows $1400, of which they pay 80% or $1120. That leaves me with a bill of $280. My supplemental has an "out of pocket" yearly minimum so unless I have other claims, they pay nothing until November each year! So the vent costs me $280 for 10 months, then a little less for 2 months. All my vent supplies (replacement hoses, filters, etc.) are included in the monthly rental. My suction machines, and other equipment is under a service contract and costs $22 every 3 months. By filing a financial hardship form detailing your financial situation, you may be eligible for a reduced payment or write off of your bill.
Perhaps another source of resistance is all the emotional baggage the word ventilator carries, primarily the words "Life Support." Sadly those words always conjure up images of death bed scenes where life support is withdrawn. Yet the reality is that ventilator use is far more positive in the vast majority of cases. Premature babies, people having major surgery, accident victims, people with severe pneumonia all survive because of ventilators. And so can ALS patients. Granted the differences for ALS patients are major; permanent ventilation versus temporary, advancing disability versus recovery. But when the major obstacles to quality of life are the fatigue, loss of appetite, anxiety, depression, repeated bouts of life threatening congestion all caused by respiratory problems, a ventilator can restore quality of life at least for a while.
One of biggest reasons for resistance to venting is, sadly, negative comments and advice from doctors and nurses. The information you get from doctors and nurses is so out of touch with reality! Some of my favorites are:
Well, the patient is the only one who can judge his quality of life and if it isn't satisfactory, he can have the vent removed. My quality of life improved drastically with the trach and vent. Several studies show medical personnel rate a patient's quality of life lower than the patient does:
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.The above information was taken from "Independent Living and Quality of Life Among Persons Who Use Ventilators," an in-press book chapter by Margaret A. Nosek, Ph.D., and S. Ann Holmes, M.D. Both authors are ventilator users themselves. |
Nonsense. Family and friends can do it. Managing vent maintenance requires an hour or so of training but anyone, including kids and probably chimpanzees, can suction, handle vent alarms, and use the ambu bag if necessary with just a few minutes of explanation and hands-on time.
Only if you want it to. Suction machines and other equipment are right at hand even in a cabinet or drawer. Trach supplies don't need to be sitting out anymore than your toothbrush and deodorant do. Being in a wheelchair required infinitely more expensive and highly visible changes to my home than going on a vent!
This falsehood is all the more irritating because it is a quote from Dr. John Bach, the guru of non-invasive ventilation. (Quoted in "MISSION POSSIBLE?: Converting to Noninvasive Ventilation By Jean Dobbs for New Mobility Magazine, May 1996.) This may be true for some trached people, but definitely not for all! With my trach cuff deflated, my sense of taste is, unfortunately for my waistline, unimpaired. My sense of smell is limited only in that I cannot sniff well enough to smell something being waved under my nose. A scent that permeates the air such as food cooking, a vase of flowers, or something going bad in the fridge is very obvious to me! With the cuff inflated, my sense of smell is quite diminished but not erased, and my sense of taste is just fine.
