Life as an Extreme Sport

The Plural of Anecdote is not Data [August 11]

Today Bob finished his lecturing, wrapping up the four distinctions in avoiding killing, and running through the different states of competence in patients. It was technical in rattling off lists fashion — he was obviously in a hurry to finish his data — and there wasn’t a lot of deliberative information. Of course, I suppose in part I feel this way because I’ve had Bob’s texts assigned in the part, and none of this information is particularly new — I’ve debated and argued over it, and honestly don’t remember a lot of the debate. Nor did I find there much today; Bob ignored a lot of questions in order to move forward, and those that were asked were along the line of challenging his authority to even explain the distinctions and his knowledge of philosophy, the sort of questions that just make me groan and wish I was in another room.

What I did find interesting was that the Josef Kamp case was not resolved by the bioethicists, or the family, or even the doctors. In the end, the family likely saw that their wish was honoured, and Josef was kept alive until Allah took him home. No convincing to change beliefs or treatment, just a lot of agonizing debate in the background, which ultimately came to naught as Josef’s ravaged body gave out and refused resuscitation.

I would have liked to know how Bob felt about this, how the doctors felt about it, and how the parents felt about it. All the people involved, what was their emotional reaction to this end? As this week is ending, I find myself shifting away from the law and more towards the emotion, which is probably a good shift. (Or at least, one where I can play, since I have no aspirations to practice law.) And this makes sense, it is in line with my thesis research. How are we connected? How do we feel about each others actions, how do our actions impact, affect others?

How did Josef Kamp’s death affect everyone surrounding him?

While Bob didn’t answer this question, he did tell us a beautiful story, one that grounded me back in my feelings and emotions. While I did shift from worrying about law (and especially worrying about my utter lack of NY State law, and the frustration I felt at things shifting from ethics to law to being told I was clueless) to thinking about emotions, it took a distancing first, where I felt very cold and remote from the subjects we were talking about. Passion, fire, drive, it was all behind a wall, allowing me to think but not experience. Bob yanked this wall down with a simple story. A beautiful story.

I cannot do justice to this story. I can’t tell it on paper (digitally) in a way that will move you the way Bob’s voice will move you. I cannot make this text crackle with tears and restraint. It’s a simple enough story, of death in an ICU. The sadness comes in the hopelessness, in the knowledge of the pain of the death, for the patient and the family. A girl, dying in the ICU, blinding fluorescent light in her eyes that the nurse wouldn’t allow turned off, despite her begging pleas, parents unable to spend more than 5 minutes at a time with her due to The Rules, no chairs in the room, no privacy, nurses not bothering to cover the dying girl’s body because she kept throwing the blanket off, and it irritated them. The futility Bob felt, inability to help her, do more than stand there and touch her and wish he could do more as he accompanied her life to its end. Her painful, long and lonely death in that hospital. And Bob’s decision, as he witnessed this, to do his best to make sure no one else ever had to die that way again.

Beautiful, moving, touching.

I’ve thought, since the story, about this. About the fact that we all have stories that have moved us to wanting to make this difference, practicing bioethics, to get involved in the debates and decisions between doctors, patients and families. And I’m curious what those stories are — I’d love to be able to simply go around and ask people to tell me their story, to record it, to see if there are similarities, and note the differences. Are we all motivated by the same thing? What variety is there in our emotional, moving story or stories? Is there a single clear point, as there was for Bob, or is it a composite of experience?

It’s the ultimate philosophy question honed to a specific field, isn’t it? Why, why are we here?