On Death and Dying by Elisabeth Kubler-Ross

I don’t know why I picked this one up. I’d heard of it—in a vague, almost misty kind of way. A book written by a health care professional who works with the terminally ill, documenting what she learned about how the human animal approaches and eventually accepts its own death. That sounds fascinating to me, but this is not that book. Well, not really.

She has a chart. The chart shows the five stages of dying: denial, anger, depression, bargaining, and acceptance. And she has transcripts of long interviews with patients, supposedly in each one of these stages. Except the interviews…

…were purposely left unedited and unabbreviated and demonstrate moments when we were perceptive of a patient’s implicit or explicit communications and times when we did not react in the most responsive manner. The part that cannot be shared with the reader is the experience that one has during such a dialogue: the many nonverbal communications that go on constantly between patient and physician, physician and chaplain, or patient and chaplain; the sighs, wet eyes, the smiles, gestures with the hands, the empty look, the astonished glance, or the outstretched hands—all communications of significance which often go beyond words.

That’s probably the crux of my problem. Call me weird, but I didn’t pick up the book for unedited interviews that don’t reveal anything. Based on its title and its reputation, I picked it up for…oh, what’s the phrase? Communications of significance which often go beyond words.

The book is also a relic. A relic from a time when health care professionals feared the mortality of their patients.

During my last visit to Mr. X., I saw that this usually dignified man was furious. He said over and over again to his nurse, “You lied to me,” staring at her in angry disbelief. I asked him the reason for this outburst. He tried to tell me that she had put the siderails up as soon as he asked to be put in an upright position so that he could put his legs out of bed “once more.” This communication was interrupted several times by the nurse, who, equally angry, stated her side of the story, namely, that she had to put the siderails up in order to get help to fulfill his demands. A loud argument ensued during which the nurse’s anger was perhaps best expressed in her statement: “If I had left them down, you would have fallen out of bed and cracked your head open.” If we look at this incident again in an attempt to understand the reactions rather than to judge them, we must realize that this nurse also used avoidance by sitting in a corner reading paperbacks and “at all costs” tried to keep the patient quiet. She was deeply uncomfortable in taking care of a terminally ill patient and never faced him voluntarily or attempted to have a dialogue with him. She did her “duty” by sitting in the same room, but emotionally she was as far detached from him as possible. This was the only way this woman was able to do this job. She wished him dead (“crack your head open”) and made explicit demands on him to lie still and quiet on his back (as if he were already in a casket). She was indignant when he asked to be moved, which for him was a sign of still being alive and which she wanted to deny. She was obviously so terrified by the closeness of death that she had to defend herself against it with avoidance and isolation. Her wish to have him quiet and not move only reinforced the patient’s fear of immobility and death. He was deprived of communication, lonely and isolated as well as utterly helpless in his agony and increasing anger. When his last demand was met with an initially increased restriction (the symbolic locking him up with the siderails raised), his previously unexpressed rage gave way to this unfortunate incident. If the nurse had not felt so guilty about her own destructive wishes, she probably would have been less defensive and argumentative, thus preventing the incident from happening in the first place and allowing the patient to express his feelings and to die a bit more comfortable a few hours later.

A relic from a time when clergy hid behind their doctrine and rituals rather than face the reality that surrounded them.

What amazed me, however, was the number of clergy who felt quite comfortable using a prayer book or a chapter out of the Bible as the sole communication between them and the patients, thus avoiding listening to their needs and being exposed to questions they might be unable or unwilling to answer.

Many of them had visited innumerable very sick people but began for the first time, in the seminar, really to deal with the question of death and dying. They were very occupied with funeral procedures and their role during and after the funeral but had great difficulties in actually dealing with the dying person himself.

They often used the doctor’s orders “not to tell” or the ever existing presence of a family member as an excuse for not really communicating with the terminally ill patients. It was in the course of repeated encounters that they began to understand their own reluctance of facing the conflicts and thus their use of the Bible, the relative, or the doctor’s orders as an excuse or rationalization for their lack of involvement.

A relic from a time when adults had a strange, childlike sense of morality.

As I say, I had always been a good boy. I didn’t swear, I didn’t use vile language, I didn’t drink, I didn’t smoke, I didn’t particularly care for them. I didn’t chase women, very much, that is, and I was always a pretty good boy.

Oh, wait. That’s largely how things still are. How depressing.