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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.

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