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Patient Decision Making, CPAP, and the Medical World

Posted Mar 26 2010 8:27am

A few years ago I blogged about my ongoing search for help with my own sleep apnea and after about 15 years of "experimenting" with CPAP and related interventions, I find myself still struggling.  And so, I've been asking myself, "Why is it so complicated to get this right?"  The problem, I think, is that the solution to any medical problem sometimes "takes a little time" which the medical world is not always so good at tackling.  The "quick solution" approach, when it works, is terrific...if only life were always like that.

With CPAP treatment for sleep apnea, as an example, the solution for some is quick and positive: It works and keeps on working.  Great!  Problem solved: Patient and doctor are all happy.  But in most cases, complications arise:  The settings on the CPAP machine aren't quite right, the mask leaks, a titrating machine would work better than a staticly set machine, the patient is swallowing air and needs to try lower pressures, a Bi-Pap machine is needed (one that forces air in and out), and so on.

And so, many sleep apnea patients need to have ongoing communications with the prescribing doctor (usually a pulmonologist or ENT doc) to make adjustments and changes on a frequent basis.  But, the medical system doesn't always work that way, instead requiring that patients make appointments, often weeks or months out, to discuss issues that should more efficiently be handled by brief telephone contact.  Patients then become discouraged due to the "hassle factor" and come to believe that CPAP is unworkable.

Then there is the intersection with medical supply companies which provide the equipment.  They are bogged down with insurance company demands, including scheduled times when you are allowed replacement parts ("Sorry, you are not allowed a new mask until the middle of next month"), communication problems with prescribing doctors (resulting in incorrect machine settings, which in turn lead to poor experience with CPAP), outlandish costs (e.g., $38 for a piece of plastic tubing that connects mask and machine).

Interesting also is the views of the doctors and medical supply companies of patients: They see patients as "non-compliant" ("Patients give up so easily after we have given them this expensive equipment" or "Patients become nasty and demanding" when replacement parts fail to show up in the mail after weeks of waiting).  But doctors especially, fail to see the systemic problems that lead to giving up: The medical system fails to maintain an easy communication system that facilitates problem solving.  I'm sure that thousands of patients, for example, have given up CPAP when they would have otherwise succeeded if they had only learned how to adjust a mask properly, or switch to a different size, and so on.  Years ago I nearly gave up when I experienced my tubing "sweating" from condensation during a cold winter in NH...until a colleague at the College recommended that I shove the tubing under my bed covers to eliminated the contrast between cold and warm air producing condensation.

Why am I writing about these systemic problems in medicine?  Because I see similar types of systemic problems that reek havoc on other problems as well...including helping children and adults with neurodevelopmental problems (I'll save this for another piece).  But leave it be said, that we need to move beyond "Clinical" conceptions of helping, and include "Systemic Analysis," when working with a range of people seeking help.

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