Today at work I got a call from the nursing home social worker.
"I need to talk to you about advance directives, because the staff have some concerns about your aunt," she said.
We review advance directives at nearly every care conference I have, every other month, in person or by phone. The deal has always been that if my aunt should become terminally ill, there will be no heroic measures to prolong the end, just comfort care so that she can pass as painlessly and with as much dignity as possible. To me, this seems like a fairly reasonable, and common, directive.
So I was confused by this phone call. And, because I am who I am, I heard in the social worker's preface a subtextual, "The staff thinks you've screwed up, and now your aunt is suffering."
I asked for some clarification. The social worker told me that the advance directive in my aunt's file had requested full intervention in any sort of emergent situation. I said I didn't understand, and re-explained what I've always told the staff at our care conferences. She then asked me what sort of intervention I do want them to do.
At this point I got a little peeved. "You know," I responded, "I am not a medical professional. You folks are the medical professionals. I have just told you that I want my aunt to have whatever palliative medical care will keep her as comfortable as possible until the end. You are the folks who would know what those procedures and protocols are. I don't know. And I am feeling very angry and frustrated right now because you don't seem to be hearing me." (Thanks to an assertiveness training class, long ago, for helping me remember to own my feelings in affirmative, first-person sentences.)
The social worker seemed taken aback for a moment. "Well," she responded, somewhat defensively, "I understand that you're feeling frustrated" (we're both reading from the same playbook now, I thought)...but I'll need to go through this list item by item."
And so she did. Did I want my aunt to receive CPR if her heart stopped? I thought of both my parents going through this type of violence to their bodies in the last moments of their life. No, I said; no CPR.
"Will that aid in her comfort, if inability to eat is causing her physical pain?" I asked. "If it is going to make her more comfortable and more pain-free, then yes."
"If it is going to make her more comfortable and more pain-free, then yes."
"If they are going to make her more comfortable and more pain-free, then yes."
And on it went, my blood pressure rising with each question. What part of "more comfortable" and "pain-free" are they not understanding? I thought.
Fellow Traveler met me for lunch and talked me down. "It's all just CYA," she said. "They're concerned about 'regs' and audits and malpractice suits."
I understand that. Hell, I work in the public sector, so I live it. But it just adds to the stress of going through this experience. I'm reminded of my breast exam, when the doctor asked me what I thought was wrong with my breast. Huh? Did I go to medical school?
I know that in times past the godlike authority of doctors and relative powerlessness of patients didn't always serve the cause of medicine well. But it seems to me that there has to be some sort of happy medium between the old model and the new one, where it seems like patients and caregivers are on their own when it comes to medical guidance -- where they go to professionals seeking help and instead have information thrown at them with an attitude of, "You figure it out." I don't really think that this is "patient empowerment."