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Introduction (Back to Order Page)
Many traumatic stories were told to me early in this project. The traumas to
families were physical, emotional, mental and spiritual in nature. They included
invasive surgeries, painful treatments, and technical prolongation of life despite
advanced illness or age. Families or their significant caregivers were “on hold”
for months and even years, because they didn’t know what their loved ones
wanted or needed in relationship to their illnesses and treatments. Patients were
often clinging to the last shreds of their lives because they were afraid of dying,
afraid of death, and what might occur after death. Financial havoc was evident in
households, in extended families, in the way insurance companies would pay or
not, and in the country as a whole as it wrestled with the national health-care
crisis. While it seemed the problems were occurring near the end of life, as my
study progressed I could see the causes of the problems had existed much earlier.
Whether it was a month, a year or a decade before, important, and often simple,
conversations had not taken place.
The baby boomers—now in their early fifties—had not heard from their
parents, nor told their children, about hoped for end-of-life goals. A patient had
not expressed his or her desires to a physician about the kinds of interventions
desired or not. A physician had not described what a surgery or the recuperation
period had really entailed. Family members who had become estranged had not
reconciled with each other before death stepped in, and were experiencing guilt
and longing for what might have been. Above all, the idea that dying and death
was inevitable and an important part of living had become excluded from the
conscious fabric of our lives.
I saw wise parents prepare themselves for the birth of their children and
study each stage of growth and development. Birthdays, graduations, bar
mitzvahs, weddings and more births were celebrated. Funerals were endured.
Children were often excluded from attending funerals. I learned that many people
had reached middle and old age without ever seeing a dead body, unless it was on
television. If we don’t see, hear, feel and touch death, how will we remember to
talk about it?
The first draft of this book was filled with horror stories, such as those
mentioned above. I thought I could scare the reader into embracing dying and
death: “Look what can happen to you if you don’t talk with your family now!”
I also believed that filling out the Advance Directives could solve many of
the problems that had occurred in the stories. The information would be written
down. When a crisis occurred, a loved one would have access to that specific
information. In fact, on many occasions when I began to describe this book or the
workshops I was presenting, people often responded by saying they had already
“taken care” of that—facing dying and death—because they had created the
documents. While I still feel it is very useful to make Advance Directives, Wills
and Trusts (as long as the important or necessary people know where to find
them), I came to see that it is those conversations that explore the reasons,
philosophy, and beliefs behind the choices that hold the greatest value.
As my own journey continued, the avoidance of dying and death seemed
especially curious to me when everyone I met who had personally “sat with
death” —that is, they had actively participated in the dying process of a loved
one—had been profoundly and positively affected. These people said their lives
would never be the same again and they no longer felt afraid of their own deaths.
Was this further evidence that our relegation of the dying to hospitals and the
care of strangers was what had separated us from our final experience of life?
The Final Mystery is not that we will die. That is now more certain than
taxes, given loopholes and deferments. The mystery is when we will die, what
will happen after we die, and, most importantly, how we will die. Will it be
sudden or slow, early or late, painful or peaceful? In this new century we must
also consider our own effects on the mystery. Does technology provide a
loophole to avoid death or just a deferment? When is it a positive benefit to
take a deferment? When does a technological deferment take us past the point of
a peaceful death?
These questions and mysteries can only be addressed if we open our hearts
and minds to the inevitability of death, to the possibility of increasing life’s joy
and intensity by participating in that awareness, and the willingness to talk with
each other now.