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When It's Time to Say Goodbye
December 30, 2003
By JANE E. BRODY New York Times
The end of life has become an alien
experience for those of
us living in countries where most people spend their
final
days in institutional settings. As a result,
conversing
with people fast approaching the end of life is
foreign for
many people, who may be reluctant to visit dying
friends or
relatives because they do not know what to say or do.
There is no better time to learn than
now, when more and
more people are dying of protracted illnesses in
hospitals,
nursing homes, hospices and, increasingly, at home
with
hospice care. While physicians may do an excellent
job
treating potentially curable illnesses, after modern
medicine has no further treatment to offer, they
often
become tongue-tied and may even abandon their
patients,
leaving the task of emotional support to friends and
family.
In his helpful book "I Don't Know
What to Say: How to Help
and Support Someone Who Is Dying" (Vintage, 1992),
Dr.
Robert Buckman, a medical oncologist at the
University of
Toronto, wrote, "One of the biggest problems faced by
terminally ill patients is that people won't talk to
them,
and the feelings of isolation add a great deal to
their
burden." Talking and listening to a dying person can
help
relieve the patient's and the visitor's distress,
fears and
guilt.
Dr. Buckman, who practices at the
Toronto-Sunnybrook
Regional Cancer Center, reassures those who are
concerned
that talking about dying will create new fears and
anxieties. "In fact," he says, "the opposite is true:
not
talking about a fear makes it bigger. Those patients
with
no one to talk to have a higher incidence of anxiety
and
depression. Bottled-up feelings may also cause shame.
Many
people are ashamed of their fears and anxieties."
Keep in mind, too, that dying is a
lonely experience. Many
people are more afraid of dying alone than they are
of
death itself. By knowing how to act and what to say
when
visiting a dying person, you can bring caring and
comfort
that eases the person's passage over this most
momentous
threshold.
Patients often take their cues from
their visitors. If
meaningful discourse is to occur, the visitor has to
be a
good listener. Take off the coat, try to relax, sit
down at
eye level with the patient, if possible, and as close
as
you would to a healthy friend. Remove obstacles that
create
distance or block eye contact. If touching and
kissing were
appropriate before the person became ill, they are
fine
now, too.
If you deliver a monologue about what
you are doing or what
is happening to mutual friends and relatives, you
immediately convey the impression that you are not
interested in the patient's concerns. Instead, focus
on the
patient. Try to determine whether the patient wants
to talk
and what about, perhaps by saying, "Do you feel like
talking?"
You might ask, "How are you feeling
today?" or, "What can I
get you?" or, "Can I make you more comfortable?"
Offering Encouragement
Let the patient take the lead in
talking about difficult topics and deep concerns, and
encourage continued conversation by saying something
like,
"Yes, I understand," or, "Tell me more," or
reflecting back
to the patient what you heard.
If the patient starts talking about
how bad things are or
says he knows that he is dying, do not contradict him
or
change the subject. Instead, you might ask: "How can
I
help? Are there things you'd like to say or matters
that
worry you?"
Do not be afraid to say that you do
not know what to say
and do not become disturbed by lulls in the
conversation.
Often just being there and staying close says enough.
Avoid giving advice, unless it is
asked for. Do not regale
the patient with tales of patients you heard about
who were
saved by a particular doctor or took an alternative
remedy
and experienced a miraculous cure. If there really
were
miracles out there, they would be in use at every
major
medical center. And do not try to compare the
patient's
experience with that of anyone else.
If there were enjoyable experiences
you once shared with
the patient, you might reminisce about them, even if
it
makes you and the patient sad to realize they will
never
happen again. It is, after all, O.K. to cry when
someone
you love is dying.
It is also O.K. to laugh, if there
are things that you both
find amusing. Humor can lighten the patient's
emotional and
physical burden by putting things in perspective and
raising the pain threshold.
Expect Fallout
Dr. Buckman points out that, like
those in mourning, people
who are dying are likely to pass back and forth
through a
series of emotional states, including denial, anger
and
acceptance. Although some patients - often those who
are
deeply religious and believe in an afterlife -
readily
accept the end of life with grace and equanimity,
others
may, as Dylan Thomas suggested, "Rage, rage against
the
dying of the light."
Anger is often the hardest stage to
deal with for those
close to the patient, for anger is often misplaced.
As Dr.
Buckman put it, "When somebody in your family or
circle is
facing a serious illness and death, the anger that
she
feels might really be directed at the illness; it
comes out
directed at you because you are the only person
around. If
you are aware of the fact that the anger isn't meant
for
you personally, then you might be able to respond in
a way
different from the typical family-argument style."
If, for example, the patient says, "I
feel dreadful, and
you're no help," instead of rising to the bait with,
"This
is no picnic, you know," or even, "I'm doing my
best,"
(which might prompt a reply, "Well, that's not good
enough"), you could respond with, "How bad do you
feel?"
or, "What's bothering you the most?"
You, the future survivor, may also
experience anger. You
may be angry about the disruption in your life, the
anticipated loss of your companion or support system
or the
seeming unjustness of the illness. In such cases, the
patient may become the target of your anger. Because
that
is of no help to either of you, it is best to find a
sympathetic soul who will talk things through with
you. By
recognizing the cause of your anger, you may be able
to
dissipate or at least redirect your angry feelings.
Some terminally ill patients remain
in denial to their
dying day. They may ask repeatedly, "I'm getting
better,
aren't I?" or "When can I get out of here?"
There is little to be gained by
agreeing with such
optimistic thoughts or directly refuting them. You
might
respond with a vague, "Let's hope so," or try gently
to
redirect the patient's thinking by asking, "What have
the
doctors told you?" or: "What if you don't get better?
Should we make some plans just in case?"
Finally, you may be faced with a
patient in despair who has
lost all hope. Avoid making promises that cannot be
kept,
like, "Surely you'll feel better tomorrow." Instead,
try to
counter despair by reassuring the patients that
everything
possible will be done to assure their comfort,
including
relief of pain, and that no matter how bad things
get, you
will always be there.
http://www.nytimes.com/2003/12/30/health/30BROD.html?ex=1073813849&ei=1&en=ab3e86d7799d2074
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