Wednesday, January 28, 2009

The Pitfalls of Patient Empowerment

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.

"Feeding tube?"

"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."

"Blood transfusion?"
"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."


Songbird said...

Thank God for those assertiveness techniques, right?

zorra said...

I agree with FT. That phone call had CYA and "upcoming audit" written all over it, and her mandate was to make sure all the boxes were checked and all the pieces of paper matched. If that's nerve-wracking for the family, well, so sorry.

I agree that it's hard for people to have a huge pile of information dumped on them by professionals who don't (or feel that they can't) take the time to serve as sounding boards to help those people sift and weigh that information. And I would bet that the social worker who called you resents that, in order to keep her paycheck, she has to spend way more time pushing paper and checking boxes than actually doing social work.

PS (PSanafter-thought) said...

I think that it is pathetic that they waited until now to go over this.

But I do want to add my two cents worth about going over such a list: At least there was a list and at least there was an opportunity to ask questions and make comments.

We went to a lawyer 1 1/2 years ago to update our will and do the other legal stuff for this end of life care. The lawyer was fine, but also, not a medical professional. The paper about the advanced directive was utterly vague and unhelpful. We could have just signed it, as most people might. However, my husband is a medical professional. We talked about all the details that you heard. He wrote down a bunch of stuff that he wanted and didn't want and helped me to do so. He had recently dealt with a dying patient who had this vague form and realized how worthless it was. I think the lawyer didn't realize how poor the form was. From the doctor's point of view, the more info, the better, because otherwise the family gets asked this stuff at the side of the dying patient, so to speak, when emotions are frayed.

So, quite frankly, I think that the social worker, also not a medical professional, was doing something that is quite helpful. Too bad it is now.

Processing Counselor said...

I'm sorry you had to go through that.
My father had a living will, and when he had his heart attack in the car-due to congestive heart failure (he also had cancer) and he just had lunch out with his married girlfriend-who knew about the living will, he still ended up in the hospital on life support! Yes, broken ribs etc. Coma for 10 weeks etc. Why can't we just have computer chips under our skin with our wishes, rather than waiting for our daughters-me-to arrive from NY! PS, living will was in the glove box.

cheesehead said...

I'm sorry you are having to do this, but grateful that there is at least a social worker willing to do the little boxes with you.

When I was doing my CPE (chaplaincy training)I was required to be one of the people who talked to patients about advanced directive right before procedures such as heart caths. (If they didn't have one on file with the hospital already) I was really there only to witness the signature, but they always had unanswered questions.

It makes no sense me to this day that I, as a non-medical person, was in charge of explaining this complicated paperwork to somebody who was facing a nerve-wracking procedure.

Rev Scott said...

I agree with FT and Songbird, and I don't think I'd call this patient empowerment. There's nothing empowering about burdening people with these questions.