Leaven #2

“I think troubling experiences with end-of-life care drew several of us to the ethics committee.”

This explanation – which I have heard several times during my first few weeks – brings to mind a six-week graduate seminar I was teaching years ago about the history of philosophical and religious attempts to make sense of human suffering. A few days into the seminar, one of the students received a painfully honest letter from his wife, an intensive care nurse. She insisted we not allow the raw realities of human suffering so often experienced at life’s end to fade into abstraction. I still have a copy of the letter --

. . . Work has been very difficult lately. Sometimes I could just scream! I think I would feel better if I could. People are so sick. They have no quality left to their lives at all, but yet we keep them alive – prolong their dying time. It’s awful! I’m actually taking care of rotting bodies. It is amazing what the human body can endure and end up looking like and still exist.

I was helping another nurse this evening clean her patient. This lady is 79-years-old, has terminal cancer, and has requested to have the right to die. Since her doctor felt she could possibly live another two years, he ordered everything possible to be done to keep her alive. This we did. One week later, this woman is still with us, literally rotting away on a respirator. Upon entering her room this evening, I could not believe what I saw. She was swollen so much that her skin was literally tearing everywhere we touched her – it had no more room to swell, so it started expanding by ripping open. If I did not know who she was, I would not have recognized her tonight. She knows nothing as far as we can tell, at least I pray she doesn’t.

Anyway, while Ann and I were cleaning this lady, I was actually becoming nauseated by the smell coming from her body. As she turned her to one side, I heard Ann give a yell. She let the patient drop back on the bed. Ann kept saying “oooh, oooh” as she stepped away from the bed. I didn’t know what was going on. Then I saw the patient’s side and part of her back. Ann, by turning the patient, had literally ripped this woman’s skin from her back and side. Needless to say, my nausea increased. All I wanted to do was walk out of the room, find her doctor, and beat on him awhile. But I didn’t do that. Instead, I turned the patient again and finished cleaning her. Soon after this, she died and I was actually glad! Relieved! I stayed nauseated for quite some time after that, but am feeling better now.

The other patients we have are not much better than the old lady. They are all dying. We have a 40-year-old patient who has some kind of rare brain tumor. We put her on a respirator this evening. The cancer has left her terminal, but we still put her on a respirator. Can you believe it! Instead of letting her die quickly, we are going to prolong her death. I can’t stand it. These patients request to die and we say no. They have no rights. I can’t accept this. I won’t accept this.

Don’t you ever let anyone torture me by keeping me alive when I have no quality left. I’m not concerned with quantity of life. I’m only concerned with quality. These patients have no quality, only a matter of time.

I still feel her grip, her urgency, her disgust, her challenge, her fear. The ‘ethical dimensions of patient care’ are ultimately about the integrity and the core values upon which healthcare professionals and their support staffs assist patients -– including patients in nauseating conditions -- as they strive to begin life with hope, live life with joy, and end life with a measure of self-respect.

Think about it. Perhaps talk to a co-worker.