I don’t want to get into a debate about this, hence it’s in The Pit. I realize some decisions are beyond the pale, and I don’t want to debate the merits of this decision. It’s the attitude that makes me so fucking angry.
An essay in the latest issue of Newsweek cost me a few hours of sleep. I get so fucking angry at paternalistic attitudes in the medical community. This “ethicist” is of the position that if only the baby’s parents could be made to understand, they would do what the medical folks think they should do. Anytime someone has a different view, or reached a decision different from that of the medical folks, it must be because they don’t “understand”. It apparently never crosses her mind that the parents do understand, but happen to have a different fucking outlook on the situation than they do. This “ethicist’s” last sentence makes it pretty clear: “I wish, and the hospital staff I work with wishes, almost beyond telling, that people could know what they are asking when they ask that ‘everything’ be done.” You know what? Maybe they do know. Maybe it’s the hardest, most heart-breaking decision they’ve ever had to make, and the decision they made just wasn’t the one you would have made. You’re the one who doesn’t fucking understand. People may arrive at different decisions regarding life and death than you do. But from your elitist position, they’re wrong, and if only they could be made to understand as you do, they would see The Truth .
This ethicist asks a bunch of questions in one paragraph about why the parents made the decision they did. Asking those questions tells me no one much bothered to talk to the damn parents. You wonder why they chose this course? Try asking them. Were they there when you had your committee meetings to discuss the merits of their decision? Doesn’t sound like it. And what’s with the “they were young and from Haiti” bit? What does that have to do with anything? Oh, I see, being young and from Haiti solidifies your point about them “not understanding”, because young people from Haiti are incapable of making informed decisions and acting in accordance with their own principles - they should just submit to the superior insight and enlightenment of the medical community and cease trying to make their own sorry decisions by their pitiful, uncomprehending selves. That’s why you didn’t bother to find out where they were coming from, or have them at your “ethics” meeting - their views are so ill-informed and unenlightened as to be inconsequential. If they were professionals from Palo Alto would you be writing this? Oh, of course not. I forgot. By definition, they wouldn’t have had to be made to “understand”.
And what’s with this “why did they put us through this” shit? Since when do I have to consider how you’re going to feel about the life-and-death decisions I make about my loved ones? Fuck you. You don’t agree with me? Tough shit. It’s going to make for a difficult situation for you? Fuck off - it’s going to be immeasurably tougher on me/us.
I was an ICU nurse. I saw this kind of stuff all the time. Do I want to be flogged, or to flog, my loved one when it seems there is no hope? NFW. But can I conceive that some people may see life as so precious that one must do whatever is possible to preserve it? Or that they may have some other well-considered reason for arriving at a decision differently from me? Yup. I don’t happen to agree, but I understand that people may have different outlooks than mine on these most personal of decisions. When I was a nurse, part of my job was to make sure people had all the knowledge and information available to them so that they could make a decision that they could live with. My job was not to try to sell them on a course of action I felt was best, but to support them in the decision they arrived at, no matter my personal feelings on it.
Do you think that these parents were too stupid or ill-informed to sense the palpable disapproval for their chosen course of action for their child? You may think you can “detach” and provide “professional” care, and have them be none the wiser, but that never happened in my experience. Patients and families would pick up on staff attitudes, and it made the situation that much worse. I’ve had families come to me and say something along the lines of “We know people here are upset that we’re________”, or “I know everyone thinks we should______”, and it would break my heart. They’re in the midst of a terribly painful time, making terribly difficult decisions, and they have to feel like the medical staff is disapproving, or angry with them. And the rest of their days they may be haunted with questions about whether they did the right thing. Not just the usual questions, but questions buttressed by the disapproval and/or anger of the medical staff.
Do I agree with the decision the parents made? No. Do I think it’s just because they don’t “know what they are asking when they ask that ‘everything’ be done” and are in dire need of enlightenment? No, and that attitude really pisses me off.
Go pound sand up your ass. And I wish you had had the balls to say what hospital you worked for so I could be sure never to end up there.
Shaky Jake