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Oregon Palliative Care Study Article

 

From The Oregonian

Title: An OHSU study finds that pain management has not kept up with expectations of the 1997 law

Date: Friday, July 23, 2004

Author: DON COLBURN

Subtitle: Pain relief for dying patients in Oregon has not kept up with rising expectations and even may have faltered in recent years, a new study suggests.

Article:

Dying patients are nearly twice as likely to experience moderate or severe pain during the last week of life, as reported by surviving relatives, compared with patients before the Oregon Death With Dignity Act took effect in late 1997, the study found.

"End-of-life care has not been 'fixed,' and there is plenty of room for improvement, particularly in the final week of life," a team of Oregon Health & Science University researchers concluded.

The findings call into question the widespread view that pain control at the end of life has improved markedly in Oregon. They were published in the Journal of Palliative Medicine.

Researchers said the contradiction may be partly explained by rising expectations about pain control since the high-profile debate and publicity about the Oregon law. Stretched budgets for care of Medicare and Medicaid patients also may be involved, they said.

"What this study did for me was contrast our view of things versus what's actually happening," said Dr. Erik Fromme, who led the research. Fromme is an assistant professor of general medicine and geriatrics at OHSU and senior scholar in its Center for Ethics in Health Care.

The findings, he said, "are not necessarily what people wanted to hear."

They raise a troubling question for people who deliver -- or receive -- end-of-life care: Has the actual quality of care, including pain relief, failed to keep pace with rising public expectations for a painless death?

The OHSU study deals with deaths outside the hospital: at home, in nursing homes or assisted living centers -- any of which may include hospice care.

Family members rated their dying relative's pain during the final week of life. Researchers compared 340 deaths from 1996-97 with 1,384 deaths from 00-02. They found a startling difference: 48 percent of the later patients were said to be in moderate or severe pain, compared with 31 percent in the earlier group.

After accounting for medical and demographic differences between the two groups, researchers found that dying patients in the later period were about twice as likely to be described as having moderate or severe pain.

Oregon is the only state in which a doctor can legally prescribe a lethal dose of medication to a terminally ill patient of sound mind who makes the request in writing and meets certain other requirements. The Oregon Death With Dignity Act took effect after a fierce public debate, court challenges and two ballot measures.

Fromme said there is no doubt that the public debate over doctor-assisted suicide and its alternatives in Oregon raised the public consciousness of the need for better pain control at the end of life. Studies since then have suggested that both doctors and patients are more aware of the importance of pain relief. Oregon ranks high among states in use of strong painkillers, such as morphine, and rates of hospice enrollment.

Those changes have not reached all areas of the state equally, Fromme said.

"People all around the state have heard the publicity, but they haven't necessarily gotten better care. If people's expectations are higher, I'm glad," he said. "But in addition to expecting more, I hope they'll push the health care providers to get them the care and pain relief they need."

The results point out how important it is for patients and families "to be constantly vigilant" when it comes to pain and end-of-life care, said Ann Jackson, executive director of the Oregon Hospice Association. Otherwise, she said, "the system default is to do as little as possible."

Two factors may have discouraged doctors from prescribing adequate pain medication, she said. First, controversy over the misuse and addictiveness of the prescription narcotic OxyContin scared doctors and patients.

Second, the Bush administration's effort to quash the Oregon Death With Dignity Act may have had a chilling effect. U.S. Attorney General John Ashcroft wrote a memo in 01 that Oregon doctors could be prosecuted for violating federal drug laws if they prescribed a lethal dose of medication in response to a patient's request under the Oregon law.

Oregon challenged the opinion in court and, so far, has prevailed. But the court fight made some doctors skittish about prescribing strong pain drugs, Jackson said.

Another factor is the budgetary strain on nursing resources. "The negative impact of overstretching nursing resources on pain management should not be underestimated," the OHSU study found.

The research was funded by OHSU, the Robert Wood Johnson Foundation, the Greenwall Foundation, the Open Society Institute's Project on Death in America, the Meyer Memorial Trust and the National Institute of Nursing Research.

Don Colburn: 503-294-5124; doncolburn@news.oregonian.com.