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Understanding Dying Process

Understanding Dying Process

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Understanding
the
Dying
Process
JIM
WILLIAMS,
MD-
GORDON
MATHESON,
MD
SUMMARY
The
study
of
death
and
dying
has
recently
experienced
an
increase
in
both
popularity
and
importance,
as
evidenced
by
the
growing
number
of
relevant
booksand
articles.
Advances
in
medical
technology
have
given
physiciansthe
ability
to
postpone
death
temporarily,
therebyprolonging
the
dying
process.
Thismedical
achievement
has
resulted
in
obvious
benefits,
but
it
has
also
created
a
need
for
better
understanding
of
and
response
to
the
dying
process.
Medical
success
in
the
form
of
'heroic'
treatment
is
no
longerbeing
valued
above
the
patient's
psychological
needs.
Dr.
Tomm
is
an
associate
professorofpsychiatry
at
the
Universityof
Calgary.Dr.
Williams
is
a
family
practice
resident
at
McMaster
University,
and
Dr.
Matheson
is
a
family
practiceresident
at
the
Universityof
Calgary.
Address
for
reprints:
Division
of
Psychiatry,
University
of
Calgary,
2920
24th
Ave.N.W.,
Calgary,
Alta.
6
Open
communication
should
never
be
relegated
to
a
purely
intellectual
level,
for
such
information
exchange
without
empathy
can
be
devastating.
The
crucial
element
is
not
what,but
how,
information
is
con-
veyed
in
the
relationship.
All
disclosure,
and
particularly
thatinvolving
mutual
sharing,
should
allow
adequate
time
for
thepatient
to
absorb
it.
1
IN
ORDER
FOR
a
physician
to
function
successfully
when
called
upon
to
support
a
dying
patient,
he
must
have
anawareness
of
the
dynam-
ics
involved
in
the
psychological
aspects
of
death
and
dying.
Several
conceptual
models
of
the
dying
pro-
cess
have
been
proposed
in
recent
years.
Kubler-Ross'
has
presented
a
model
whichemphasizes
five
emo-
tional
stages
(denial,
anger,
bargaining,
depression
andacceptance)
experi-
enced
by
the
tenninally
ill
patient.
Weisman2
has
focused
his
attention
on
thepatient's
cognitive
states,
while
Glaser
and
Strauss3
have
directed
their
efforts
towards
identifying
patterns
of
social
interaction
in
the
dying
situa-
tion.
These
three
models
provide
valu-
ableinsights
into
the
nature
of
the
dying
process,
butthey
are
somewhat
limited
in
scope
and
applicability.
An
integrated
framework
incorporating
considerations
ofemotional,
cognitive,
and
interactional
patterns
is
necessary
for
a
more
complete
understanding
of
this
critical
process.
Equallyimportant
is
the
need
for
a
model
which
applies
not
only
to
the
situation
of
the
dying
individual,
but
also
to
the
situations
of
all
those
called
upon
to
deal
with
his
death
(physicians,
nurses,
counselors,
and
family
members).
Management
of
the
dying
situation
can
be
termed
a
success
only
if
there
is
continuing
healthy
psychological
functioning
by
both
thepatient
and
the
surrounding
participants.
Common
Problem
The
models
of
Kubler-Rossand
Weisman
are
valuable
outlines
of
the
emotionaland
cognitive
states
possible
in
the
dying
situation,
butthey
suffer
a
common
problem.Bothmodels
im-
ply
a
linear
progression
of
discrete
stages
throughwhich
a
patient
passes
CAN.FAM.
PHYSICIAN
22:1420
NOVEMBER,
1976
KARL
TOMM,
MD
62
 
as
the
dying
processunfolds.
Such
a
sequential
view
proves
problematic
be-
causeactual
observation
of
dying
pa-
tients
indicatesthatpatient
responses
are,in
fact,
extremely
variable
overtime
and
do
not
follow
a
consistent
progression.
Many
patients
displayacute
depression
at
the
onset,
while
others
show
evidence
of
acceptance
by
immediately
making
a
will.
Towards
the
end
these
same
patients
may
dis-
play
considerable
denial,
seemingly
contradicting
theprogression
proposed
in
the
models.
Moreover,
some
pa-
tients
do
not
revealanger,
bargaining,
or
denying
tendencies.
Must
we
assume
that
these
reactions
are
there
even
though
we
do
not
see
them?
To
assume
that
a
linear
progression
actually
does
or
shouldoccur
within
a
patient
may
be
misleading
and
caneven
negativelyaffectpatient
manage-
ment.
Some
professionals
have
re-
sponded
by
attempting
to
'stage'
their
terminally
ill
patients
and
to
help
them
'progress'
to
acceptance.
The
idea
of
consistent
emotional
or
cogni-
tive
linearity
in
the
dying
process
should
be
tempered
by
consideration
of
a
crucialvariable
-
the
immediate
context
of
interpersonal
relationships
surrounding
the
patient..
Glaser
and
Strauss's
study
of
patterns
of
social
interaction
in
the
dying
situation
is
helpful
in
assessing
the
importance
of
this
variable.
A
Practical
Framework
Three
parameters
mustbe
con-
sidered
in
understanding
the
dying
process:
1.
The
chronological
sequence
of
events
in
the
dying
process.
2.
The
nature
of
interpersonal
rela-
tionships.
3.
The
reactions
of
theindividual.
Given
knowledge
of
the
first
two
parameters,
it
is
possible
to
make
general
predictions
about
the
third.
The
Chronological
Sequence
of
Events
The
first
parameter
focuses
on
the
progression
of
events
relevantto
the
patient's
physical
rather
than
psycho-
logical
status.
Two
variables
operate
within
this
parameter:
time
and
in-
formation
about
the
patient's
physical
condition.
The
pace
of
physical
deteri-
oration
can
be
plottedalong
the
time
axis
and
related
to
events
in
the
other
two
parameters.
The
patient's
physical
status
can
be
classified
into
three
predeath
stages,
adoptedfrom
Weisman'smodel:
1.
Primary
awareness
of
illness.
2.
Established
illness.
3.
Finaldecline.
The
markers
which
delineate
the
boundaries
of
these
stages
are
variable
in
their
discreteness
and
timing.
The
beginning
of
primary
awareness,
for
example,
is
at
times
imprecise
because
the
signs
or
symptoms
which
arouse
suspicions
of
life-threatening
illness
may
be
vague
or
intermittent,
but
there
may
also
be
a
clearlyidentifiable
point
in
time
which
marks
theonset
of
awareness.Similarly,thediagnosis
and
confirmation
of
the
illness
as
life-
threatening
may
occur
at
an
identifi-
able
point
or
may
evolve
gradually.
On
the
whole,however,
physical
deteri-oration
is
ultimately
progressive
and
linear,
despiteintermittent
fluctua-
tions,
and
the
order
in
which
events
occur
is
the
same
for
most
patients.
Interpersonal
Relationships
The
second
parameter
of
the
assess-
ment
framework,
the
interpersonal
re-
lationshipcontext,
is
particularly
con-
cerned
with
how
information
is
hand-
led
during
the
sequence
of
events.
There
are
two
basic
variables
within
the
second
parameter:
the
amount
of
information
exchangedand
the
emo-
tional
responsiveness
of
the
individuals
involved.
Themodel
of
interpersonal
relationships
presentedhere
is
des-
cribed
primarily
in
terms
of
the
physi-
cian
who
is
called
upon
to
treat
a
terminally
ill
patient,since
the
dis-
closure
of
information
is
often
re-
garded
as
his
responsibility.
However,
it
is
equally
applicable
to
interactions
between
the
patient
and
his
family
or
between
a
family
member
and
a
nurse,
etc.
Four
types
of
relationship,
based
on
a
continuum
of
increasing
com-
municative
exchange,
can
be
differen-
tiated:
no
disclosure,
partial
disclos-ure,
unilateral
opencommunication,andmutual
sharing
of
both
informa-
tion
and
affect.
The
first
type
of
relationship
(no
disclosure)
is
found
in
the
situation
where
the
physician
has
not
informed
the
patient
of
the
nature
and
severity
of
his
illness.
Such
situa-
tions
still
do
occur,
especially
when
the
patient
is
quite
young
or
very
old.
Partial
disclosure
is
perhaps
the
most
common
type
of
doctor-patient
relationship.
Here,
the
physician
may
reveal
the
technical
diagnosis,
but
does
not
elaborate
on
the
prognosis.
In
cases
of
opencommunication,
the
physician
includes
an
explanation
of
the
extent
of
the
illness
and
its
ex-
pected
complications.
The
patient's
physical
condition
and
his
feelingsare
discussed
openly,
hence
the
open
com-
munication
is
unilateral.
Mutual
sharing
differs
from
opencommunication
in
that
the
personal
thoughts
and
feelings
of
both
parties
in
the
situation
are
made
explicit.
Traditional
roles
and
barriers
are
dropped,
leaving
two
persons
to
face
one
another
as
equals
sharing
a
very
meaningful
experience.
Mutually
dis-
closingrelationships
are
somewhat
rare
between
physician
and
patient,
but
are
common
between
family
members
during
the
dying
process.
The
termin-
ally
ill
patient
is
particularly
receptive
to
such
integrative
experiences
during
the
stage
of
established
illness,
and
theycan
provide
him
withan
incred-
ible
amount
ofemotional
strength
for
making
a
successful
adaptation
to
hissituation.
Physicians,
like
everyone
else,
vary
tremendously
in
their
capacity
to
share
information
and
feelings
in
their
relationships
with
others.
Generally
speaking,
there
is
a
positive
correlation
between
the
physician's
emotional
responsiveness
and
the
amount
of
in-
formation
he
exchanges.
That
is,
the
more
sensitive
the
physician,
the
more
he
is
likelyto
share.
Doctors
who
are
prone
to
withdraw
from
emotional
turmoil
or
who
regard
death
as
a
medical
failure
may
have
a
problem
overcoming
their
own
avoidance
ten-
dencies
enough
to
empathize
with,
or
even
recognize,
the
psychological
needs
of
the
patient.In
an
unconsci-ous
attempt
to
avoid
having
to
cope
with
the
emotional
turmoil
that
would
be
stirred
up,
they
may
avoid
sharing
information
and
use
the
rationaliza-
tion
that
they
lack
the
time
and/or
sufficient
certainty
of
a
diagnosis.
Others
may
incorrectly
assume
that
theirpatients
do
not
want
to
know
the
truth
about
their
conditions.
Most
patients
do
wish
to
beinformed,
although
they
may
be
concerned
about
their
capacity
to
deal
with
the
truth.
When
thepatient
is
providedwith
an
opportunity
to
work
through
hisfears
of
emotional
turmoil
and
instability,
he
usually
becomes
quitereceptive
to
full
communication.
The
overall
direction
of
good
man-agement
is
that
in
which
there
is
development
of
the
potential
for
full
sharing
in
all
interactions
among
participants
in
the
dying
process.
Affective
support
of
thepatient
is
important,
for
he
has
a
great
need
to
integrate
his
thoughts
and
experiences.
interactions
which
feature
mutual
CAN.FAM.
PHYSICIAN
22:1421
NOVEMBER,
197663
 
sharing
should
be
encouraged,
particu-
larly
between
thepatient
and
his
family.
Those
patients
who
have
no
opportunity
to
share
with
family
members
or
close
friends
should
be
provided
with
some
other
resource
to
aid
them
in
integration.
While
it
is
often
not
possible
or
appropriate
for
the
doctor/patient
relationship
to
beone
of
mutual
sharing,
open
commun-
ication
on
an
affective
level
shouldbemaintained
in
thephysician'sdealings
with
the
terminally
ill
patient.
Relationships
based
onmutual
shar-
ing
or
on
unilateral
opencommunica-
tion
require
a
greatdeal
of
timeand
a
significant
amount
of
emotional
energy
in
order
to
be
successfullymaintained.
It
is
not
surprising
that
openness
in
the
doctor/patient
rela-
tionship
is
often
allowed
to
lapse
as
the
illness
progresses
and
the
discus-
sion
of
new
information
is
overlooked.
Such
lapsing
is
generally
unfortunate,
although
it
may
be
appropriate
when
the
patient's
mental
status
becomes
impaired.
Open
communication
should
never
be
relegated
to
a
purely
intellec-
tual
level,
for
suchinformation
ex-
changewithout
empathy
can
be
devas-
tating.
The
crucial
element
is
not
what,
but
how,
information
is
con-
veyed
in
therelationship.
All
dis-
closure,
and
particularly
that
involving
mutual
sharing,
should
allow
adequate
time
forthe
patient
to
absorb
it.
Waiting
until
the
final
decline
is
leav-
ing
it
too
late.
Individual
Reactions
When
both
the
patient'slocation
within
the
chronology
of
the
dying
process
and
the
nature
of
his
inter-
personal
relationships
are
understood,
it
is
possible
to
anticipate
some
of
the
reactions
he
may
experience.
(Again,
it
shouldbe
remembered
that
although
the
framework
is
described
in
terms
of
patient
reactions,
it
nonetheless
is
meant
to
represent
the
reactions
of
any
individual
forced
to
come
to
terms
with
the
situation
of
an
impending
death.)
An
assessment
of
the
patient's
overall
psychological
state
should
involveconsideration
of
his
thoughts,
feelings,
and
behavior.
However,
be-
cause
assessment
of
both
cognition
and
affect
requires
a
highdegree
of
inference,
the
following
classification
of
reactivestates
is
based
primarily
on
observable
behavior.
The
behavior
of
the
dying
patient
at
any
onetime
may
reflect
one
of
three
reactive
states:
avoidance,
emo-
tional
turmoil,
and
adaptive
activity.
These
three
behavior
states
canbe
seen
as
alternatives
along
a
dynamic
con-
tinuum
between
the
two
opposite
poles
of
avoidance
or
approach.
The
situation
beingavoided
or
approached
is
any
particular
threateningeventoccurring
in
the
first
parameter
-the
chronological
sequence
of
events.
The
state
of
emotional
turmoil
is
seen
as
intermediate
and
transitional,
mediat-
ing
the
movement
from
oneextreme
orientationtotheother.
Ideally,
movement
from
one
typeof
behavior
state
to
anothershould
be
free
and
flexible
so
thattheindividual
can
respond
appropriately
in
whatever
specificsituations
he
may
findhimself.
Optimal
management
would
facilitate
such
ease
of
movement
for
thepatient
or
other
involved
individuals.
An
un-
derstanding
of
the
threegeneral
reac-
tive
states
and
some
of
their
implica-
tions
should
aid
in
management.Avoidance
is
a
general
term
used
to
encompass
thoseobservable
behaviors
which
represent
attempts
to
evade
threatening
issues.
All
terminally
ill
patients
behave
in
this
manner
at
times
to
minimize
the
immediate
painful
realization
of
impending
losses
and/or
death.This
avoidance
helps
protectthe
patient
from
the
intense
and
at
times
disorganizing
emotion
which
is
generated
by
the
meaning
they
attach
to
particular
events.
Denial
is
a
com-
mon
example
of
avoidance
behavior,
but
other
more
sophisticated
psycho-
logical
defense
mechanisms,
such
as
suppression
or
intellectualization,are
often
used
to
keep
overwhelming
affect
within
bearable
limits.
Apart
from
allowing
the
control
ofemotions,avoidance
is
in
fact
the
most
appropriate
reactive
state
for
those
involved
in
the
dying
situationto
be
in
most
of
thetime.
Avoidance
allows
the
patient,for
example,
to
continue
his
customary
activities
and
to
enjoy
the
time
that
he
has
left
without
always
carryingthe
mentalburden
of
full
awareness
of
impending
death.
However,
when
avoidance
is
exclusive
or
overly
persistent,
it
usually
becomes
inappropriate
and
problematic.
Such
inappropriate
avoidanceminimizes
im-
portant
communication
among
thoseinvolved
and
may
even
inhibit
the
patientfrom
takingappropriate
action,
such
as
seekingpossible
treat-
ment
or
settling
personal
affairs.
The
physician
should
intervene
if
there
is
too
much
avoidance,
taking
into
account
the
fact
that
difficulty
in
tolerating
the
intermediate
reactive
state,
emotional
turmoil,
is
usually
what
is
blocking
the
free
movement
to
adaptive
activity.
Extended
informa-
tion
exchangeandmutual
sharing
sessions
can
aid
in
ameliorating
the
block.
Emotional
turmoil,the
second
general
reactive
state,
is
generally
trig-
gered
in
response
to
informationabout
thedeteriorating
condition
or
its
im-
plications.
Many
types
of
emotion
may
be
experienced
and/or
expressed
by
the
patient,
and
they
do
not
necessarily
follow
thesequential
pat-tern
described
by
Kubler-Ross.
During
the
course
of
dying,
the
patient
may
manifest
any
or
all
such
emotions
as
fear,
anxiety,
anger,sadness,
shame,and
guilt.
The
type
of
emotion
experi-
enced
dependson
the
meaning
theindividual
attributes
to
specific
events
or
to
the
information
shared.
This
meaning-attribution
in
turn
dependson
his
particular
past
experiences,
knowledge
and
beliefs,
which
are
highlypersonal
and
idiosyncratic.
Similarly,
the
mode
of
expressing
emo-
tion
is
largely
dependent
on
long-
establishedindividual
response
pat-
terns.
Some
patients
tend
to
internal-
ize
theirfeelings,
while
others
are
very
demonstrative
and
demanding.The
importance
of
the
second
para-
meter,
the
immediate
interpersonal
context,
in
mediating
the
patient's
emotional
response
cannotbe
over-
emphasized.
If
hisfears
and
anxieties
can
be
recognized
and
discussed,
they
can
often
be
alleviated.
In
one
case,
for
example,
a
patient,
having
re-
flected
on
the
new
information
that
his
malignancyhad
spread
to
his
liver,
became
preoccupiedwith
the
fear
that
he
would
lose
control
of
his
mind.Unknowingly,
he
had
associated
the
bizarreviolent
outburst
of
an
uncle
who
had
died
with
brain
metastases
with
his
own
illness.
Once
the
nature
and
source
of
thepatient's
emotional
response
had
been
explored,
it
was
possible
to
relieve
his
anxiety
through
further
information
sharing
to
theeffect
that
there
was
no
evidence
of
brain
metastases
in
hiscase.
Quite
apart
from
the
profound
fear
of
loss,
a
great
deal
of
emotional
turmoil
is
also
triggered
by
thedisrup-
tion
of
simple
customary
activities.
Admission
to
hospital
interrupts
a
large
number
of
personal
patterns
and
forcesthe
patient
to
fall
in
with
unfamiliarschedules
and
routines.
Additional
changes
in
lifestyle
re-
quired
of
thepatient
by
his
illness
may
have
even
more
of
an
emotional
im-
pact
than
hospitalization
or
thoughts
CAN.FAM.
PHYSICIAN
22:1422
NOVEMBER,
197664

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