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Living With Serious Illness |
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 How
We Die -- Then And Now
A hundred years ago, most adults died quickly from infections or accidents.
While there was not a lot of time for goodbyes, there was little doubt
when good-byes were appropriate. Now, death may not come quickly,
but the time for good-byes can pass by without notice. Often, missing
this opportunity doesn't arise from the lack of time, but from lack
of certainty that the time has come. You probably expect that you
will either die suddenly (from a heart attack, for example), or be
sicker and sicker before you die. With chronic diseases, however,
you often experience episodes of being really sick; but, in between
them, you get along rather well. During any of the really sick times,
you could be sick enough to die. But, if you survive several of these
episodes, then you hardly know when you are really going to die. Is
dying going to be just the end of those really sick times? Will it
be something altogether different? If you die during one of the otherwise
"well" times, your loved ones may feel as if you died "suddenly,"
even though you had been "living with " your disease for
a long time.
Think of people that you have known who were said to be "dying."
Nearly everyone knows someone who has out-lived the time a doctor
said was left. And nearly everyone knows of someone who believed she
had much more time left than she did. Just as we have no guarantee
that we can sense when time is short, our doctors cannot be certain
either. In fact, there is no medical definition of what "dying"
or "terminal" is, or how soon before death someone should
be considered "dying.".
In one study of nearly 10,000 seriously ill patients in hospitals
across the United States, nearly half of the patients died within
six months of their enrollment in the study. But the best medical
predictions by statistical methods and by the patients' doctors had
trouble sorting out who was "dying." One week before death,
the average patient still had a 40% chance of living six months. Even
on the day before death, the average patient still had a 10% chance
of living six months.
Many people have a tough time saying that someone is "dying"
if he has a 10% chance of living. (It is so easy to ignore the 90%
chance of "not living.") And 40% is not even close to being
sure that someone will not recover. In general, we do not want to
say that someone is "dying" until we are almost 100% certain
of death within days or weeks. To do so sounds like giving up on someone
we love. We might even feel guilty if we give up on them and they
get better.
This leaves us in an awkward position. If we want the end of our lives
to be a time of growth, meaning, or even merely comfort, how do we
know when that time is? How can you "say goodbye" if you
might be living longer? If you have been pursuing all kinds of treatments
and technology that are uncomfortable, how do you know when to let
go of these and make different plans for how to spend the end of your
life? An old saying calls on us to "live every day as if it were
your last." While this may sound rather grim, especially if you
are seriously ill, there is some useful wisdom here. Even though you
usually will not know exactly when you will die, you can try to be
prepared. Planning is good, and practice may make it better. But the
planning and practice have to be realistic about just how uncertain
the timing of death is likely to be. |
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Adapted from The
Handbook for Mortals: Guidance for People Facing Serious Illness,
by Joanne Lynn and Joan Harrold, copyright by Joanne Lynn, used by
permission of Oxford University Press.
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