Sunday, April 26, 2009

cancer or not?

When I spoke with Dr. Meister on the day he gave us Mom's prognosis, my aunt asked whether what Mom had could be called cancer. He replied in the negative: "She has a tumor." I'm ashamed to say I don't yet understand the distinction being made here, but I assume that "tumor" applies to a class of malignant or benign growths composed of matter that may or may not be cancerous-- where "cancer" refers, at least in part, to the twisted genetic structure of cells gone wild and no longer able to die (see here; scroll down to the "apoptosis and cancer" section).

However, I noted last night that Mom's discharge papers contained the term "brain cancer."

This may be indicative of a larger dynamic we noticed at the hospital: departments don't always talk to each other, and a lot gets lost in translation as a patient's charts and paperwork are moved from one section of the bureaucracy to another. I don't know what sort of literature there is about family as caregiver, but it became obvious to us, during Mom's stay, that the family definitely plays a role in making sure that each element of the hospital system does what it's supposed to. Blind trust is not an option. While many of the nurses who dealt with Mom were friendly, neat, and efficient (shout-out to Manuel and others), some were, unfortunately, lax and sloppy. We also noticed that various doctors and nurses had wildly different ways of dealing with the MRSA protocol; while most put on gowns and gloves, some would walk in and say loudly, "I'm not touching anything! Just writing an update on the wall chart!" when entering and leaving the room (MRSA is spread by contact; it's not an airborne pathogen). One doctor walked in having taken no precautions at all; when we reminded him of the MRSA protocol, he nodded and said, "I'll wash my hands when I leave."

I don't mind the blasé attitude toward MRSA colonization; there were valid biological reasons for the medical professionals to believe that Mom wasn't in any immediate danger of MRSA infection. But the inconsistency with which the various personnel handled the protocol was disturbing, and the protocol itself, when examined closely, didn't seem to make much sense. For example: we were told by one nurse that, when an object (like a purse) was brought into the room, it was technically contaminated. Despite this fact, the various medical personnel were walking in and out with pieces of equipment (such as barcode scanners to update patient treatment information) that they would often lay on Mom's bed. These same professionals were also carting in pagers and cell phones (see this recent article on cell phones as an epidemiological problem). Were they all somehow immune to MRSA and other pathogens? Suffice it to say that I have my doubts.

All of which is to say that I'm not entirely clear on whether Mom can be said to have cancer, because different sources say different things. Hospital bureaucracies are enormous; information has a tendency to morph in direct proportion to the size and complexity of the bureaucracy. Determining what's true becomes something of a chore in such conditions. It's up to the family, to the people who have a personal stake in caring for the patient, to make sure that everyone is on the ball.

So you can guess what sort of research will be occupying my upcoming week.

ADDENDUM: None of what I said about hospital care is meant in bitterness. I'm deeply thankful to all the people who contributed to Mom's care. My point, however, is basically that people make mistakes; the more people involved in a given endeavor, the more likely it is that mistakes will accumulate and snowball. For this reason, it's up to those closest to the patient to watch out for her.

After that earlier near-disaster (alluded to in this post; see item 5), Dad and my brother Sean began taking notes about what was happening when; Dad remarked that the quality of Mom's care improved visibly when the staff realized notes were being taken. See what I mean? The lesson here is Be visibly vigilant.


No comments: