death by bureaucracy

Today marks three weeks since the biopsy and I have yet to undergo any of the needed tests to determine the malignancy's extent, origin, or treatment plan. I have an appointment to meet my new oncologist on Thursday, but without any new test results I'm not sure that we can do more than exchange casserole recipes and compare Oscar predictions.

Last Friday I was told that the radiology lab had received authorization for a CT-scan and that I should call right away to schedule an appointment. I attempted to do so, and got as far as leaving a voice mail, which went unreturned through the weekend. Yesterday morning I called again and reached a member of the office staff, who affirmed that they had, in fact received the authorization, but that it had been filled out improperly and that I could not make an appointment until it was corrected.

It's been like this since June. We learn that a referral to a specialist has sat on a receptionist's desk for a week because her fax machine was broken, a message left for a doctor sits untransmitted, my HMO turns down a request because someone misread a doctor's handwriting, a doctor in a hurry puts us on hold and the person who picks up the phone fifteen minutes later doesn't know why we called in the first place. We've only made it this far because Karla knows the system well enough to cut through the various obfuscations and is persistent enough to call people back when they don't call us and to refuse to hang up until someone has answered her questions. I don't know how most people make it through the health care labyrinth at all.

On the deepest level, this matters to me because over the summer I began working through the possibility that if I did have cancer I might not come out of it alive. It became clear to me that one important factor that would allow me to go peacefully would be the reasonable confidence that, after a time of grief, Karla would still have several decades to build a good life for herself, to remarry if she so chose, to think about her career and future in terms that weren't defined by my medical needs and limitations, to move to a place where she ccould be grateful for the second half as well as the first half of her time on earth. I'm afraid, however, that if other people's indifference or incompetence plays any role in determining whether I live or die, the bitterness from that may affect her for years to come.

My Austrian friend Maria, whose family's medical issues involved her in her native country's socialized health care system, expresses surprise that the American system is such a jungle. I seriously wonder whether the union of free market and medicine hasn't outlived its usefulness.