| This
chapter
illustrates
the
distress
to
relatives
that
can
follow
brain
retention
without
their
knowledge
in
circumstances
where
the
brain
is
properly
retained
for
diagnostic
reasons.
This
distress
is
compounded
when
relatives
only
discover
at
the
inquest
or
later
that
brain
retention
has
been
hidden
from
them.
|
|
|
|
| Chapter
29
described
the
distress
of
Mr
Fayle's
relatives
when
they
discovered,
ten
years
later,
that
Stuart's
brain
had
been
retained.
Many
relatives
with
similar
experiences
feel
deeply
deceived
and
betrayed.
In
this
chapter
the
deceased
is
not
named
at
the
request
of
his
relatives
in
view
of
the
profound
distress
that
the
events
described
have
already
caused
for
his
relatives.
|
|
|
|
| For
identification
purposes,
the
deceased
is
referred
to
as
'CP'.
|
|
|
|
| Sources
of
information
|
|
|
|
| This
chapter
is
based
on
the
correspondence
between
CP's
parents,
the
Coroner,
the
hospital
where
CP
died
and
the
pathologist
who
carried
out
the
post
mortem
examination.
|
|
|
|
| Background |
|
|
|
| CP
was
aged
24
at
the
time
of
his
death.
He
suffered
from
Asperger's
syndrome
and
lived
in
a
residential
home.
|
|
|
|
| On
20
February
1999
CP
was
a
passenger
in
a
minibus
which
was
travelling
at
speed
when
he
fell
on
to
the
hard
shoulder
of
a
motorway.
His
injuries
were
further
compounded
by
a
second
vehicle
that
ran
over
him.
|
|
|
|
| CP
was
transferred
unconscious
to
the
Neurosurgical
Department
of
the
hospital
where
he
died
six
days
later
without
regaining
consciousness.
|
|
|
|
| In
view
of
the
accident
which
had
led
to
CP's
death,
the
circumstances
were
reported
to
the
Coroner
who
ordered
a
post
mortem.
|
|
|
|
| CP's
parents
were
with
him
when
he
died.
They
were
told
that
they
would
be
able
to
visit
his
body
in
the
mortuary.
When
they
tried
to
make
the
necessary
arrangements
they
were
informed
that
their
son's
body
had
been
transferred
to
another
hospital
for
the
post
mortem
examination.
This
took
place
on
1
March.
|
|
|
|
| CP's
body
was
released
to
his
parents
on
5
March
1999.
|
|
|
|
| Investigations |
|
|
|
| During
the
interval
between
CP's
fall
from
the
minibus
and
the
release
of
his
body,
the
police
and
the
Health
and
Safety
Executive
were
carrying
out
the
appropriate
investigations.
The
Crown
Prosecution
Service
decided
not
to
begin
criminal
proceedings,
thus
enabling
the
Coroner's
inquest
to
resume
on
19 August.
|
|
|
|
| The
inquest |
|
|
|
| At
the
inquest
there
was
no
reference
to
the
fact
that
CP's
brain
had
been
retained.
After
the
inquest
CP's
parents
requested
copies
of
the
notes
of
evidence
on
which
the
Coroner
had
reached
an
open
verdict.
On
receiving
the
reports
they
discovered
for
the
first
time
that
his
brain
had
been
retained
for
further
tests.
This
caused
them
great
distress.
They
had
no
idea
they
had
buried
their
son
with
a
major
organ
missing.
|
|
|
|
| The
histology
report |
|
|
|
| CP's
parents
were
further
distressed
to
discover
that
the
histology
report
was
not
available
to
the
Coroner
at
the
time
of
the
inquest.
The
date
of
the
report
is
26 August,
a
week
after
the
end
of
the
inquest.
|
|
|
|
| The
immediate
impact
on
the
family
|
|
|
|
| Had
CP's
parents
been
informed
from
the
outset
of
the
reasons
for
retention
of
his
brain,
much
unnecessary
distress
could
have
been
avoided.
His
parents,
following
their
discovery,
immediately
wanted
to
know:
|
|
|
|
Whose
decision
was
it
to
retain
the
brain?
|
|
Who
gave
authority
to
retain
the
brain,
for
what
period
and
purpose?
|
|
What
documentary
evidence
was
such
authority
included
within?
|
|
Who
gave
authority
to
carry
out
tests
further
to
those
carried
out
as
part
of
the
post
mortem?
|
|
Why
were
those
further
tests
not
forwarded
to
the
Coroner
until
after
the
date
of
the
inquest?
|
|
Why
were
tests
still
being
carried
out
on
the
brain
after
the
inquest
had
closed?
|
|
CP's
parents
also
wanted
to
know:
|
|
Why
had
they
not
been
told
in
advance
that
their
son's
body
would
be
transferred
to
another
hospital
when
they
had
been
assured
that
they
could
see
CP
in
the
mortuary?
|
|
Why
had
no
one
informed
them
of
their
right
to
have
a
medical
representative
attend
the
post
mortem
examination?
Urgency
could
not
have
been
the
reason,
as
there
was
a
delay
of
three
days
between
CP's
death
and
the
post
mortem.
|
|
Why
did
no
one
ask
for
their
views
on
what
should
happen
to
their
son's
brain,
until
they
started
asking
questions?
|
|
|
|
| The
lack
of
an
explanation |
|
|
|
| The
discovery
that
CP's
brain
had
been
retained
deeply
shocked
his
parents.
At
first
they
could
not
believe
the
report
was
accurate.
Their
initial
enquiries
did
not
resolve
their
anxieties.
When
they
later
discovered
that
the
histology
report
was
not
written
until
after
the
inquest,
this
reinforced
their
belief
that
CP's
brain
need
not
have
been
retained
in
the
first
place.
The
histology
could
not
have
had
any
influence
on
the
inquest
verdict,
so
'why
was
it
necessary
to
retain
the
brain?'
|
|
|
|
| Further
correspondence
did
not
answer
their
questions
but
served
to
undermine
their
confidence
that
they
were
being
given
full
information.
|
|
|
|
| The
position
of
CP's
parents
is
best
described
in
their
own
words:
|
|
|
|
| '…
we
feel
that
the
lack
of
information
and
the
resulting
feelings
of
abuse
do
parallel
(in
Coroner's
cases)
the
now
widely-recognised
situation
with
hospital
post
mortems.
|
|
|
|
| We
feel
the
apparently
needless
retention
of
this
organ
(CP's
brain)
does
parallel
the
widely-recognised
situation
with
hospitals
where
organs
appear
to
have
been
retained
casually
and
needlessly
and
where
the
whole
issue
has
been
approached
with
less
sensitivity
and
seriousness
than
proper'.
|
|
|
|
| The
reasons
for
retention
of
CP's
brain
|
|
|
|
| The
decision
to
retain
CP's
brain
in
these
circumstances
was
certainly
justified.
CP
had
suffered
a
grievous
head
injury
when
he
fell
from
the
minibus.
This
undoubtedly
contributed
to
his
death
from
other
major
injuries.
The
Coroner
would
have
expected
the
pathologist
to
investigate
the
extent
to
which
the
head
injury
and
brain
damage
had
contributed
to
CP's
death.
|
|
|
|
| As
police
and
HSE
investigations
were
continuing,
there
was
also
the
real
possibility
that
these
could
lead
to
criminal
prosecution.
In
such
cases,
the
extent
of
the
brain
injury
would
have
been
a
central
factor.
Any
defendant
would
have
had
the
right
to
an
independent
assessment
of
the
injury
to
the
brain.
|
|
|
|
| While
the
retention
of
CP's
brain
at
the
post
mortem
was
justified,
it
is
difficult
to
understand
why
this
was
not
explained
to
his
parents.
They
had
been
informed
only
that
a
Coroner's
post
mortem
would
be
carried
out.
|
|
|
|
| It
is
also
difficult
to
understand
why
the
histological
examination
of
the
brain
was
delayed
until
after
the
inquest,
unless
the
naked
eye
appearances
of
damage
to
the
brain
were
so
grave
that
his
histology
was
not
relevant.
|
|
|
|
| No
research
or
teaching
was
ever
undertaken
or
intended
on
CP's
brain.
|
|
|
|
| As
no
one
explained
these
matters
to
CP's
parents,
their
questions
are
fully
understandable.
|
|
|
|
| Long-term
consequences |
|
|
|
| CP's
brain
is
still
held
in
the
hospital
pathology
department.
It
is
not
there
for
research
or
teaching
purposes,
but
solely
because
his
parents
have
been
so
distressed
by
what
has
happened
since
CP's
death
three
years
ago
that
they
have
difficulty
accepting
that
the
brain
is
indeed
that
of
their
son.
Such
is
the
breakdown
of
trust
that
they
have
even
considered
requesting
a
DNA
test
to
make
certain
before
they
are
prepared
to
ask
for
the
brain
to
be
buried
with
CP's
body.
|
|
|
|
| Summary |
|
|
|
| The
case
of
CP
graphically
illustrates
the
distress
and
confusion
of
relatives
that
can
follow
when
an
inadequate
explanation
is
given
of
the
need
for
organ
retention
in
a
Coroner's
case.
This
is
particularly
important
when
retention
is
necessary
for
medico
legal
purposes.
|
|
|
|
| CP's
parents'
discovery
after
the
inquest
that
his
brain
had
been
retained
has
caused
an
enduring
sense
of
loss
and
betrayal
that
they
were
kept
in
the
dark.
|
|
|
|
| The
end
result
has,
for
CP's
parents,
been
a
complete
loss
of
trust
and
a
belief
that
the
truth
is
being
withheld
from
them.
|
|
|
|
| These
feelings
are
shared
by
many
relatives
who
initially
believe
they
have
buried
or
cremated
their
loved
one's
body
complete.
|
|
|
|
| For
relatives
whose
religious
beliefs
have
been
disregarded,
hidden
organ
retention
compounds
these
feelings.
|
|
|
|
| This
chapter
demonstrates
the
importance
of
a
proper
explanation
to
relatives
at
the
time
when
decisions
are
taken
about
organ
retention.
Enquiries
by
relatives
should
be
fully
and
sensitively
answered
so
that
they
are
aware
of
any
organs
or
tissues
that
are
retained,
and
of
the
reasons
for
retention.
|
|
