Study Reveals Continued Reports of Increased Pain in Dying Hospital Patients

06/05/00    Portland, Ore.

A new study by researchers at Oregon Health Sciences University notes continued reports of increased pain for dying, hospitalized Oregonians in late 1998. The study, which is printed in this month's edition of the Western Journal of Medicine, shows 54 percent of family members reported their loved one had moderate or severe pain in the last week of life. Previously gathered data shows a sharp increase in pain levels for dying hospitalized patients. Complaints of high pain levels increased from 33 percent to 57 percent in late 1997. Susan Tolle, M.D., director of OHSU's Center for Ethics in Health Care; Virginia Tilden, Ph.D., R.N., dean of research in OHSU's School of Nursing; Susan Hickman, Ph.D., project director at the Center for Ethics; and Anne Rosenfeld, Ph.D., assistant professor in the School of Nursing, conducted both studies.

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, nor why they continued to report higher rates of pain in late 1998," said 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 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 fears 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," said 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. If they agreed to participate, they were interviewed by telephone. A total of 475 family members consented to take part in the initial study and 103 in the follow-up study. "One challenge we faced in gathering this data was that Oregon death certificates do not list contact information," said Hickman. "In order to find family members, we had to search publicly available records, such as obituaries. We were able to locate 51 percent 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 this change was in hospitalized dying patients only. The three main causes of death in hospitalized patients were cancer, heart disease and cerebrovascular disease.

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. The 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," said Tolle. "Clearly, there is a pressing need for more research into this troubling finding."

The Greenwall Foundation of New York, the Meyer Memorial Trust of Oregon and the Open Society Institute Project on Death in America of New York provided funding for this research.