| LinkExchange Member | Free Home Pages at GeoCities |
| LinkExchange Member | Free Home Pages at GeoCities |
A Reader with a "Pet Peeve:"
A Viewer’s Exasperation:
......................
THE VIEWER ABOVE WITH FURTHER THOUGHTS:
A DIFFERENT POINT OF VIEW
Do you have your own comments to add to discussions above? E-mail me at
"A pet peeve of mine...is the possible relationship between a proactive health care company/technician and the compliance rate of a new CPAP patient...many people give up too easily because they have been handed a machine and mask and left essentially to their own devices. Or worse yet (unlike the test group), instead of being titrated in a lab, they end up with the Group Health HMO approach where they are lent a machine and given a mask and they are told to set the machine at pressure level 7 and if they don't feel better they should call the nurse who tells them to adjust the machine further. An official lab study comes AFTER they have found the right pressure thru trial and error. At that point the lab study is to confirm the effectiveness level...I think that is true negligence...people with some of the most serious needs (those with very high pressure levels) could conceivably go weeks before happening on the appropriate levels...Who would not feel like a bother and simply give it up assuming it won't work for them?
"that fact is that many people are simply reluctant to become a 'bother' and ask a lot of questions."
My Response:
Even though these remarks don't directly address the situation of this study group, which was titrated before being started on CPAP, they do illustrate an important problem with the detection of problems in those CPAP users who become poorly compliant: people are reluctant to "bother" clinicians who are obviously busy, hurried, and hard to reach or make appointments with. If a home care worker arrives with the obvious intention of making some mechanical adjustment, and never sits down with the patient as an invitation to talk, is it any surprise that the technician misses hearing a lot the patient might have to say and ask?
The situation is complicated by the ubiquity throughout medicine of the placebo effect. That is to say, almost anything you do for a lot of people will make them feel at least a little better for a little while, and since the patient wants to please the clinician with a good response, he or she will be likely to say "I'm doing better" and reluctant to go back to that same person to report "I guess it was a mistake because I'm back where I started from."
I know because this happened to me, repeatedly, not only with CPAP but with both surgeries I had. The placebo effect can trick both patients and clinicians into thinking all is well and will continue so, but it has an unpleasant way of evaporating after days or weeks, whereas a "real" therapeutic effect will last. Few doctors explain such phenomena to patients, and indeed many may not understand or even believe it themselves; but it is a common mechanism whereby doctors are fooled into using subtherapeutic doses of medications and probably suboptimal CPAP pressures as well.
Last, I am surprised (and appalled) by the reader's account of some HMO approaches to CPAP initiation without prior sleep study titration. It would indeed represent frank negligence and possibly worse. It is almost hard to believe this really goes on.
If any of my audience have actually been treated in this way, PLEASE E-MAIL ME!
I would like to know the specific HMO, facility, and clinicians involved; I will contact them and ask what they think they are doing, and pursue it still further if need be. Patients are often too caught up in their need to respect the authority and maintain their belief in the well-meaningness of their caregivers, so that they are poorly positioned to serve as their own advocates for good health care. This is one reason I always recommend bringing a relative along with you to every doctor's appointment and every test you have!
I feel compelled to make a comment on CPAP non-compliance. I have seen much written about this but it really irks me that no one has hit the nail-on-the-head as to why people don’t use it. Your article and review very skillfully navigated around the problem rather than hitting it dead-on. Perhaps I’m the only one who feels this way, but to me the problem is REALLY obvious.
If a condition isn’t curable and therefore needs long-term treatment then it is imperative that the treatment modality be VERY easy to live with. CPAP failures aren’t a reflection of the patient’s unwillingness to accept a long-term illness, rather, they can’t accept an unpleasant long-term treatment! The fact that apnea symptoms can be severe and even fatal doesn’t change the basic requirement.
Poor compliance is very simply the natural response to therapies which fail to meet basic comfort/acceptability requirements.
.......................
Now if apnea were quickly curable, I think you’d find very high compliance even if the treatment were harder to live with than CPAP. Basically, the longer the treatment, the easier it needs to be to keep compliance stable.
When I first saw a CPAP machine and was told that it provided almost 100% relief in a short time, I was very intrigued. It sounded like a miracle. But when I found out it would be needed for more than a few nights I instantly gave up on it. Same for dental appliances...both CPAP and appliances wereso uncomfortable that I could only keep it up for 2 or 3 nights.
To me, the number one need of sleep disorder patients is to have the medical community and insurance companies recognize the severity and importance of this disorder. A close second need is the development of a quick cure or a very-easy-to-live-with long term therapy. Surgery isn’t very effective and CPAP fails miserably on the second requirement.
As of now, I remain untreated until more acceptable methods become available.
In follow up to my previous response about CPAP intolerance I asked myself the question “exactly what is it about CPAP that is so uncomfortable/intolerable?” Many have complained about leaky masks, exhalation resistance, etc. I’ll leave the obvious setup and machine features out of this for now so I can concentrate on the basic problems with the concept of CPAP.
In order of highest-to-lowest importance:
1. Movement constraint from being connected to something.
2. Discomfort of having something unnatural on or in you.
3. Inability to sleep in comfortable positions (for me, on my stomach).
4. Psychological discomfort of knowing your health is dependent on a machine that you must carry around (and explain to people).
5. Noise (intolerance of sleep partner).
6. Constant reminder while using CPAP that your condition isn’t getting better.
When I first got my CPAP and the sleep doc said a lot of people refuse to use the machine I was amazed. For me there was no choice. Before I was diagnosed I was afraid to go to sleep yet I was too tired to stay awake. I was so sick and tired I would have done anything to get the sleep the CPAP allows me to have. The CPAP was the greatest thing that ever happened to me. (I did not adjust right away, but I never thought about sleeping without it). In the past two years I have fallen asleep twice without the CPAP (and no one around to wake me). Both times I have awoken choking and gasping like I did before I started using the CPAP. My wife is still amazed that when I doze off on the couch I am snoring, snorting and gasping in the few seconds it takes her to tell me to wake up. I wish I never had to use a CPAP, but since I do I will never sleep or nap intentionally without it. I have a cigarette lighter adaptor for me car, I have a backup battery under my bed, and I have used both.
Get your own Free Home Page