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,'' she said.
``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,'' she said. ''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.