Pain Support: Chronic Pain....Oregon Dignity of Death...Interesting facts....

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Posted by S and G (e-mailed in to IWA) on March 05, 1999 at 21:20:56:

The following is another excellent article sent to us via e-mail by S & G. We thank you.

Task group cuts through fog of pain

A yearlong effort results in recommendations to force Oregon to implement bold, broad moves to help those with chronic pain or who are facing death

Friday, December 18 1998

By Erin Hoover Barnett of The Oregonian staff

SALEM -- A state task force will make bold recommendations to the governor and Legislature for knocking down barriers to good pain management.

During a year of work, the 30-member Task Force on Pain and Symptom Management focused on both chronic pain and pain caused by terminal illness. Its recommendations, approved by the task force Thursday, show an increasing realization of the plight of people with chronic pain, the kind that lasts or recurs over months and hinders everyday activities.

The task force's report "is going to raise awareness that this is an issue that needs to be addressed, just like we're trying to raise awareness about improvement needed in acute pain management and end-of-life care,"
said Dr. Grant Higginson, state health officer and chairman of the task force that was mandated by a 1997 state law.

Researchers at the University of Washington suggest that more than 50 million Americans suffer chronic pain that, to some degree and at some times, is debilitating, at an annual cost of $100 billion in medical expenses, lost income and productivity.

"Chronic pain is terrible," said Alicia Super, a task force member. "It changes or ruins people's lives and those of their families many times.

"For a long time, people have said we're ready to treat
postoperative or acute pain and want to be compassionate to people in pain who are dying but (that) chronic pain is different," said Super, a registered nurse and pain-management consultant in Portland. "Yet new science is showing that they're very similar, if not the same, as far as what they do to the human body and spirit."

Pain control for the terminally ill has been in the spotlight for years. A 1989 national study showed that half of patients dying in hospitals suffered moderate to severe pain. Pain management has been a key piece of
the debate over physician-assisted suicide. And this year, attempts in Congress to disable Oregon's assisted-suicide law focused national attention on pain issues.

However, the state task force agreed that treatment for
terminal pain still needs to improve. The task force plans to encourage access to hospice care for the uninsured. Hospice workers attend to the physical,
emotional and spiritual pain of dying patients.

Chronic pain treatment presents problems different from that of treating terminal pain. Historically many doctors have failed to recognize or believe that patients suffer chronic pain. Treatment is complicated by the fear of addiction to narcotic painkillers, particularly if a person needs the drugs for a period of years.

In the 1980s, the Oregon Board of Medical Examiners took a hard line against prescribing narcotics to treat chronic pain. The specter of sanctions by the board, which regulates the state's doctors, still
haunts some doctors and can result in poor pain treatment. The medical board hopes their participation in the task force has helped to dispel some of that fear and clarify their stance said Kathleen Haley, the board's executive director.

Patients and doctors began lobbying the Legislature years ago to improve chronic pain treatment. Their efforts resulted in 1993 in the Intractable Pain Act. The Task Force on Pain and Symptom Management is the
state's current effort to address this issue.

The task force found many barriers to good pain management, including:

a.. Inadequate knowledge of pain physiology and treatments by health care providers.
b.. Poor pain assessment techniques.
c.. Lack of consumer education, fear of narcotics, addiction, tolerance and adverse effects of pain medication.
d.. Poor availability of care in rural areas.
e.. Liminations placed on care by managed care organizations and insurance plans.
f.. The medical board's legacy of sanctioning doctors.
g.. Lack of a safety net to ensure that all patients have necessary resources to adequately manage pain.
h.. Lack of a clearinghouse for pain management information.

The task force heard from people with stories much like that of Kimberly O'Neal. The 27-year-old Tigard woman remembers sitting in an urgent care waiting room in October for a half hour, pain shooting from her ear
down her neck, blurring her eyesight.

Her former primary care doctor concerned that she avoid
addiction to pain pills, had taken her off medication for an ear condition called Pseudomonas mastoiditis. The burning and throbbing that plagued her after
contracting a bacterial infection in the spring had returned.

The urgent care doctor was unsympathetic. O'Neal said he shoved a scope into her ear to take a look and told her he couldn't help her. O'Neal sobbed as she left the office; she had encountered such treatment before.

"They treat me like a drug addict," she said. "They won't even look at me. They think I'm lying to them."

Super said the more some patients speak up about a need for medication, the more some doctors fear they are addicts. "If patients know the drugs or they know the dose, doctors think they're drug seekers,"
the task force member said.

O'Neal said her former doctor's nurse told her the doctor was not about to lose his medical license to keep her out of pain.

Now, O'Neal is seeing a different doctor with Kaiser
Permanente. Dr. Richard Wise, who is trying a variety of treatments, including narcotic pain medication. O'Neal keeps a journal of her pain and the drugs she
takes, and Wise has referred her for classes at Kaiser to learn to cope with her pain.

Wise said concern about whether patients are drug seekers is difficult. Pain is a subjective experience that is related in part to a person's psychological makeup and therefore hard to evaluate.

"Clearly, there are people who have chronic pain who need narcotic medication to control that," Wise said. But "how one sorts that out can be very challenging."

O'Neal finds that her pain still gets out of control when her shortacting pain pills wear off, but she feels better about the care she get from Wise. He listens and "makes me feel like I'm important," said
O'Neal, who recently felt well enough to resume work as a waitress.

The task force, with members appointed by the state health officer, includes chronic pain sufferers, doctors, alternative medicine providers, nurses, home health care workers, social workers, pharmacists,
insurers, the medical board and three state legislators. It heard testimony throughout the
state from dozens of people with pain, health care providers, insurers and advocates.

Pain management for chronic sufferers is not all bleak. Many hospitals in Oregon offer chronic pain classes or have pain centers that include pain
specialists. Alternative medicine providers, such as acupuncturists and chiropractic physicians, are gaining credibility for their ability to help
with pain. And technological advances, such as pumps that can be implanted near the spine to deliver pain medication directly, continue to be developed.

State Sen. Joan Dukes, D-Svensen, who was one of three
legislators on the task force, is optimistic that some task force recommendations will be enacted. "There will be legislation introduced as a result of this,"
Dukes said.

The task force has not nailed down the cost of its
recommendations, but Dukes hopes that money from the state's tobacco settlement might be able to be used.

Chronic pain sufferers like Roger Weeks, a task force member, hope their work will have an impact.

"There's a whole heck of a lot of people out there who aren't getting the care they need," he said.

Easing the pain

Recommendations for the governor and Legislature from the Task Force on Pain and Symptom Management:

a.. CREATE AN OFFICE OF CHRONIC PAIN MANAGEMENT: To educate health care providers and patients; consider developing a registry of patients and providers to track and coordinate care; hold conferences; monitor
research and, eventually, develop regional pain clinics with multidisciplinary pain specialists.
b.. TAKE LEGISLATIVE ACTION: Adopt a Pain Patient's Bill of Rights and make the existing Intractable Pain Act more usable.
c.. EDUCATE PROVIDERS AND PATIENTS Encourage all standard and alternative health professional training programs to include exposure to chronic pain patients and pain and symptom management.
d.. IMPROVE ACCESS TO TREATMENT: Establish pain as a
diagnosis on the Oregon Health PIan's list of prioritized services; move up on the list these conditions: fibromyalgia and acute chronic disorders of the spine without neurological impairment; encourage
access to hospice care for uninsured dying patients; recommend development of a system for managing chronic pain patients; ask the Board of Medical Examiners to update and clarify its statement of philosophy about chronic pain, including consequences for
undertreatment of pain.

For more information about the task force's
recommendations, call the state legislative policy and research office at 503-986-1813.

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