from
Questioning Assumptions
and Dawning Awareness: My Journey
in
Dying Well: The Prospect for Growth
at the End of Life
by Ira Byock, M.D.
Riverhead Books
In recent years I have consciously rejected the term good death because I
have not found it helpful in describing the personal, human experience of
decline and demise. Good death connotes a formulaic or prescriptive
approach to life's end, as if a good outcome chiefly depended on the right
mix of people, place, medications, and services. Furthermore, the phrase
good death tends to blur the distinction between death-- the state of
nonliving-- and the preceding time of living.
If you ask someone to describe what, for them, would be a good death,
they will typically tell you what they want to avoid. "I don't want to die
in pain." "I don't want to suffer." "I don't want to be a burden on my
family." "I don't want to leave my family with debts or go through our
savings." "I don't want to die alone." The image such statements convey of
a good death resembles a photographic negative, devoid of tone and texture
or real color.
In contrast, the phrase dying well seems better suited to describing
the end-of-life experience that people desire. It expresses the sense of
living and a sense of process. To my ears it also carries a connotation of
courage. Furthermore, dying well expresses what I have witnessed most
consistently: that in the very shadow of death one's living experience can
yet give rise to accomplishment, within one's own and one's family's
system of values.
Over the years I have met a number of people who were emotionally well
while their physical body was withering and, for some, literally rotting.
Logically, if even the most emotionally robust among us will eventually
die, it follows that a certain wellness in dying must be possible. My
experience in hospice confirms that this is true. Even as they are dying,
most people can accomplish meaningful tasks and grow in ways that are
important to them and to their families.
In my clinical hospice work, the conceptual model of lifelong human
development has provided me with an orientation and thus has helped me to
orient others. Years ago I began keeping notes on the developmental
landmarks and "taskwork," as I call it, relevant to the end of life. I
hoped that defining the landmarks might provide some light and offer a
general sense of direction within this dim, foreboding landscape, and that
naming the taskwork might provide paths for a person's individual journey.
This developmental work reliably enhances the quality of living.
The process is intriguingly similar to the stages of pediatric
development. To the toddler, the world keeps shifting; her physical and
emotional environments change frequently and in unpredictable ways. How
she sees herself and how she is seen differ from month to month and, at
times, week to week. What others expect of her continually changes. Within
her body and her person, new needs regularly arise and must be satisfied.
Life for the toddler presents fresh challenges that must be successfully
negotiated, or she feels insecure. To the extent she persists in clinging
to old strategies of navigating in the world and relating to others, there
is distress. For some children, the rate of change proves too fast-- the
extent of growth and development demanded by circumstances proves too
large to compress into a few weeks' time, and, at least transiently, there
is suffering.
Someone who is dying, like the developing child, goes through
stages of discovery, insight, and adjustment to constantly changing
circumstances in his person and in the ways people react to him. People
who are dying often feel a sense of constant pressure to adapt to unwanted
change. As a person's functioning declines, the physical environment
becomes threatening. A trip to the bathroom may become an hour's chore and
then, a few weeks later, a major event. On learning of the grave
prognosis, family and friends may begin acting differently, becoming
serious or even solemn in one's presence. People may avoid one out of
their own emotional pain, leaving one feeling awkward and isolated, an
innocent pariah. New strategies are urgently needed to forestall a sense
of personal annihilation. Mastering the taskwork may involve personal
struggle, and even suffering, yet it can lead to growth and dying well.
The tasks are not easy. But as a dying person reaches developmental
landmarks such as experienced love of self and others, the completion of
relationships, the acceptance of the finality of one's life, and the
achievement of a new sense of self despite one's impending demise, one's
life and the lives of others are enriched.
For the growing child and her family, each developmental landmark
is typically accompanied by feelings of mastery, expansion, a sense of
wellness, and, at times, exhilaration. The same feelings are expressed in
the stories of patients and families who may be said to have died well.
Often the challenge for a family, loved ones, and other caregivers is to
recognize the opportunities for growth and development and to help the
dying person achieve them. This takes courage. It takes a willingness to
talk about things usually avoided, like painful memories, hurt and buried
feelings, and the pragmatic details of dying and death, including with
whom
and where, obituaries, cremation or burial, and funeral. The time of dying
is a dark, foreboding place-- the end of the road, beyond which lies an
unknown, terrifying terrain. But identifying the tasks and landmarks to be
met can provide a reassuring map through an otherwise dim future. One way
to start this journey is by asking "What would be left undone if I died
today?" and "How can I live most fully in whatever time is left?" These
questions can illuminate the tasks and the landmarks ahead.
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