Oregon Study Shows Rise in Patients Dying With Pain
NEW YORK (Reuters Health) - A 1998 survey of family
members
of
recently
deceased people in
Oregon
found that over
50% reported
that their dying relative
had moderate or severe pain
in their last
week of life.
This figure, based on
interviews
with family members,
shows a rise
from the 33%
figure
recorded in an earlier study.
But it is not clear if these findings reflect
a change
in the care of the dying,
or increased recognition of
pain in terminally ill patients.
``We absolutely don't know why this increase occurred.
We can just guess and make hypotheses, and
it's probably pretty complex--several things operating
together, not just one thing,'' said Dr. Susan
Hickman,
co-author of two studies on the subject and project director
with the Oregon Health Sciences
University Center
for Ethics in Health Care.
The study results are published in the June issue
of the
Western Journal of Medicine.
From 1996 to 1997, Hickman and her colleagues
conducted a 14-month telephone interview study on
475 family members of recently deceased patients.
The researchers assessed their perceptions as to
the level of their relative's pain in several end-of-life settings-
-hospitals, nursing homes and private
homes.
After 11 months of stable indications, the researchers
noted that reports of moderate and
severe pain in a
hospital setting jumped dramatically in the last 3
months of the study--from 33% to
57%.
No change was reported for other settings.
To determine whether this increase was an aberration
or a trend, Hickman and her team did a
follow-up study
with 103 family members exactly one year later
for a 3-month period. The second
study was exactly the same as the first,
except that questions were asked solely about
those patients
who had died in a hospital setting.
The researchers found that 54% reported moderate
to severe pain in
the last week of their loved one's life.
The team concludes that the jump was sustained and continuing.
In an interview with Reuters Health, Hickman noted
that the follow-up study results were surprising,
troubling,
and not easily understood.
``The fact that more of these families were reporting pain is
important. We didn't expect this--
we thought that actually it would return to a baseline
level.''
Hickman pointed out that the Oregon public is particularly
well-educated on the subject of end-of-life
care,
having witnessed an ongoing debate concerning the
legalization of physician-assisted suicide for
the terminally ill both during 1994 when the law first
passed and again in 1997 when a second initiative
was on the ballot. Hickman suggested that
the discussion leading up to the passage of the
second vote
might be one of a number of explanations
accounting for the perceptual change in hospital-setting pain
levels.
``The subject (hospice care) was discussed everywhere-
-on public radio...in the newspapers, local
magazines, so it could be that families expect better pain
management now--that there is no
difference
in the amount of pain families and patients
are experiencing, it's just that they are more
vocal about it.''
``The other possibility is that physicians are prescribing less
medicine because they are fearful of
investigation,''
she added. ``At the time, there was a letter of
warning from the Drug Enforcement
Agency
stating that it's illegal to prescribe morphine
or pain medicine for the purpose of ending
someone's life....
That could make physicians a little jumpy.
There are other studies showing that fears
of
investigations and sanction do affect doctors' behavior.''
However, Hickman emphasized that the bottom line
is that no one knows what caused the jump.
``The
big conclusion we make is that we need to do
more research--because it's very worrisome that people
may be experiencing more pain.''
SOURCE: Western Journal of Medicine 2000;172.