Last weekend a patient of ours at BIDMC died in one of our ICUs. She was young (early 60's), with complications from major surgery, kidney failure, and multiple infections. As sad as it was - especially for a deeply devoted brother -- when it became clear that her impending death was inevitable, I was struck by how at peace everyone felt. Very sad, but at peace.
In part it was because, thanks especially to her brother, everyone knew that we were taking care of her the way she would have wanted. She and her brother had spoken openly over the years of her illnesses -- they had had "the conversation" regularly, as her illnesses evolved, and so he never had any serious doubt about what she would be thinking. Whenever she wasn't able to speak for herself, he was able to be her "voice", with confidence. Not long before she died he refused, on her behalf, one more round of surgery that the doctors were willing to do.
The usual way of describing this is that we "respected" her wishes, which we did.
But I don't think that the word "respect" deeply enough captures the way she was treated, or even what our goal should be as professionals caring for patients, or as family members seeking care for our loved ones.
Albert Schweitzer had a different word -- Ehrfurcht in German -- that we translate in English as reverence. He believed that all true "ethics" is anchored in our capacity as human beings to experience and then express a reverence for the lives we find around us.
I once heard Naomi Tutu (Nobel Peace laureate Desmond Tutu's daughter) explain the difference between Dr. Schweitzer's idea of "reverence" and the more common moral language of "respect" and "rights". When someone has "respect" for me and my "rights", she said, there's a kind of distance between us. When someone has "reverence" for me, she continued, they are engaged, they care deeply, we are connected in a way that "respect" for me and my "rights" doesn't capture.
Decisions about "life and death" can be almost overwhelmingly complex. Our failures to save a patient's life, or return them to health, can be almost overwhelmingly sad. And yet after all the complexity, and amidst all of the sadness, there is something deeply gratifying when each of us -- family and professional caregivers -- can look back and say: "she was cared for with reverence."