Hospital patients near death still report pain
Oregon study shows sharp increase in pain levels
A new study shows that dying patients in Oregon hospitals are experiencing an increased incidence of pain before death.
The study, printed in this month’s issue of The Western Journal of Medicine, shows 54% of family members reported their loved one had moderate or severe pain in the last week of life. Previous data show a sharp increase in pain levels for dying hospitalized patients.
Researchers from Oregon Health Sciences University (OHSU) in Portland revealed that complaints of high pain levels increased from 33% to 57% in late 1997. Susan Tolle, MD, director of OHSU’s Center for Ethics in Health Care; Virginia Tilden, PhD, RN, dean of research in OHSU’s school of nursing; Susan Hickman, PhD, project director at the Center for Ethics; and Anne Rosenfeld, PhD, assistant professor in the school of nursing, conducted both studies.
Causes of increase unknown
When combined, the studies identify a continued sharp increase in family reports of pain at the end of life for hospitalized patients. However, researchers point out that neither study draws conclusions about cause and effect.
"We will never know why family members of hospitalized dying patients reported higher rates of pain in late 1997, or why they continued to report higher rates of pain in late 1998," says Tilden, a co-author of the study. "Late 1997 was a volatile time in Oregon’s political and regulatory climate. Events such as the legalization of physician-assisted suicide and an extensive pre-ballot media campaign about end-of-life care were just a couple of the things that were happening at the time."
Team members suggest that possible explanations for increased reports of pain include more family awareness about pain treatment options and a possible change in physician prescribing practices due to fear of regulatory sanctions.
"On the one hand, families may have higher expectations about pain management than they have in the past and may be reporting pain more frequently," says Tolle, lead author of the study. "On the other hand, if families are right that their loved ones did experience more pain, this raises grave concerns. Were doctors writing less pain medication for these patients, and if so, why?"
Both studies used similar methods to reach participating family members through a random sampling of Oregon death certificates. Respondents were contacted two to four months after the death of their loved one. A total of 475 family members responded to the initial study, and 103 people participated in the follow-up study.
"One challenge we faced in gathering this data was that Oregon death certificates do not list contact information," says Hickman. "In order to find family members, we had to search publicly available records, such as obituaries. We were able to locate 51% of potential respondents, and just over half of these family members agreed to participate."
The telephone interview included questions about advance planning, pain management, and communication issues. Only the question about pain yielded changes over time, and those changes were in hospitalized dying patients only. The three main causes of death in hospitalized patients were cancer, heart disease, and cerebrovascular disease.
More research needed
OHSU’s Center for Ethics in Health Care has been tracking end-of-life care markers for more than a decade. Until this study, the research suggested that end-of-life care was improving in all areas. Markers of improvement include increased attention to advance planning, increased rates of hospice referrals, increased physician and public education about end-of-life care issues, decreased rates of in-hospital deaths, and decreased barriers to prescribing narcotics.
The results of this study raise many questions, and the research team stresses the need for more information. "Our study raises concerns about why more families are reporting moderate and severe pain in dying hospitalized patients," says Tolle. "Clearly, there is a pressing need for more research into this troubling finding."
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