End of Life

There was a monk in the Middle Ages who had a very difficult time remembering at the end of the day if he had done meritorious works or actions that were less than skillful. He lamented his problem to a very wise teacher.

More than 10 years ago, I saw a black and white photograph by Richard Avedon that I still vividly remember. It was taken of a young boy in 1947 in Sicily. He was in the foreground smiling broadly and wearing a suit that was too short in the arms and too tight in the waist. In the background—softly out of focus—was a tree with a symmetrical oval canopy and a fence that defined the boundary between sky and water. A seemingly bucolic scene unless you looked carefully at the boy.

As millions watched the service for Eunice Shriver, they heard her daughter, Maria, say, "If you had told me that at the age of 52, I would finally get up the nerve to crawl into bed with my mother, hod her,...

As the debate on heath care reform heated up, the phrase “end of life counseling” was used as a canard by opponents of change. According to many of them, end of life counseling was the equivalent of a death panel where those worthy of saving would be, and those deemed too expensive to maintain would have the plug pulled. One would have to go back to the McCarthy period to find this level of accusation and inaccuracy. But where was it coming from?

Death is the ugly relative we don’t talk about. It’s hidden from our thoughts as if it doesn’t exist. Worse, we carry our perceptive blinders into our clinical practice. Entering a patient’s room, we tell them how good they’re looking, despite sunken cheeks and a sallow complexion. We may even make the mistake of asking how they feel. “Lousily,” they answer incredulously. “I’m dying you know!” We stare at them and mutter something later regretted, such as, “Oh, I’m sorry to hear that.”

The literal translation of the Yiddish word “tsuris” is problems. My mother defined it as things no Jewish mother deserved from her son. I was an expert at giving them to her, especially when it came to hopping from one major or graduate program to another.

What would you say if a terminally-ill child asks the question? Should you be honest, probing, or try to convince her this is just a passing illness? The decision may be dictated by parental preferences or institutional policies. But what if there’s latitude in what you can say, or the moment is so pregnant with a child’s concern you don’t have time to consult with anyone? As with most things in hospice, there isn’t a right or wrong answer—just different ones.

A gray on gray Pacific coast morning begins as new yellow flowers push from beneath scarlet ice plant fingers, and a mother says goodbye to her son’s ashes.