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Reprinted by permission of Elsevier Science Inc.: Wisconsin Initiative for Improving Cancer Pain Management: Progress Report, by David Joranson, June Dahl, and Diane Engber Journal of Pain & Symptom Management, Volume 2(2): 111-113. Copyright 1987 by the U.S. Cancer Pain Relief Committee.

Wisconsin Initiative for Improving Cancer Pain Management: Progress Report

David E. Joranson, June L. Dahl, and Diane Engber

"We know how to relieve cancer pain. This is not something to be looked into. It is, for us, the moral imperative to act."

-John C. Duffy, MD
Assistant US Surgeon General

"The omnipotence which is given to narcotic drugs, that somehow they have the power to warp cancer patients' lives and become the central focus in their lives is a myth. No scientific report says so."

-Theodore M. Pinkert, MD
US Public Health Service
Interagency Committee on Pain and Analgesia

(Statements to participants of the Wisconsin Strategy Session on Cancer Pain, December 5-6, 1987)

This is the fifth report in JPSM on progress of the Wisconsin Initiative for Improving Cancer Pain Management, a multi disciplinary effort aimed at addressing the undertreatment of cancer pain. This effort was begun early in 1985 by the Controlled Substances Board, the state drug regulatory agency, after legislation was introduced in Congress to provide for the use of heroin by cancer patients. After reviewing the literature and consulting with experts, the Board concluded that the cancer pain problem is not due to lack of effective analgesics, but to a complex set of factors including inappropriate concerns about addiction. The Board convened an informal steering committee to assess the problem and recommend solutions; much of the work of the committee over the past year entailed planning for a state-wide strategy session. Held in December 1986, the Strategy Session's purpose was to create a comprehensive action plan for Wisconsin that could also serve as a model for other states. The US Public Health Service Interagency Committee on Pain and Analgesia (IACPA) has provided support and technical assistance. Funds are provided to the University of Wisconsin Foundation and are managed by the University of Wisconsin Clinical Cancer Center in cooperation with the Controlled Substances Board.
This report will briefly review the Strategy Session, related press coverage and the direction of our plans for the coming year. A more comprehensive report will appear in JPSM later this year.

The Strategy Session

The Strategy Session began on December 5, 1986 at Wingspread in Racine. It was hosted by the Johnson Foundation, which is devoted to supporting brief, intensive meetings of a relatively small number of experts to address well-defined problems. The cosponsors of the session and related activities were:

the Controlled Substances Board
the IACPA
the University of Wisconsin Clinical Cancer Center
the Cancer Center of the Medical College of Wisconsin
the Marshfield Clinic
the State Medical Society of Wisconsin
the Wisconsin Pharmacists Association
the Wisconsin Society of Hospital Pharmacists
the American Cancer Society--Wisconsin and Milwaukee Divisions
the Wisconsin Nurses Association, and
the deans and directors of the Wisconsin schools of medicine, pharmacy and nursing.

The participants included 65 individuals from around the state with a broad base of cancer-related expertise representing 50 Wisconsin health care organizations. The Session opened with a brief history of the Controlled Substances Board's involvement in the cancer pain problem and a discussion of why it is important for the state to have a balanced drug policy that will protect society from drug abuse yet assure availability of drugs for legitimate medical purposes.

Presentations by national and international authorities were the major focus of the morning session. John C. Duffy, Assistant US Surgeon General, delivered a moving keynote address and call to action. Theodore Pinkert and David Friedman from the IACPA reviewed federal cancer pain activities and expressed their strong support for state-level initiatives. Dr. Pinkert also delivered a formal statement on behalf of Charles Schuster, Director of the National Institute on Drug Abuse, on the issue of drug addiction in cancer pain treatment.

Jan Stjernswärd, Chief of the Cancer Unit of the World Health Organization (WHO), told the group that a serious cancer pain problem exists world-wide. This is partly due, according to Dr. Stjernswärd, to governmental concerns about drug abuse. He also explained WHO's Freedom from Cancer Pain program. Three key concepts guide the program: a preference for the use of oral analgesics, a three-step analgesic "ladder," which progresses from aspirin to codeine to morphine according to pain severity, and the administration of analgesics "by the clock" instead of "as needed" Dr. Stjernswärd's remarks about the magnitude of the problem were echoed by Dr. S. Shah from Tata Memorial Hospital in Bombay, India and Dr. Romero-Romo from the National Cancer Institute in Mexico City. New cancer pain activities in the US and between Wisconsin, WHO, India and Mexico began at the Strategy Session.

Kathleen Foley of Memorial Sloan-Kettering Cancer Center in New York, gave a consummate review of the assessment and management of cancer pain. She emphasized that addiction is very rare in cancer patients with no prior history of drug abuse, and thus should be of little, if any, practical concern. Laurel Archer Copp, Dean of the School of Nursing at the University of North Carolina and Chairperson of the National Institutes of Health Consensus Development Conference on Pain (please refer to the October issue of JPSM), provided a valuable perspective on the difficulty of achieving agreement on national pain strategies. Representing the National Cancer Institute, Carrie P. Hunter discussed NCI's current arid future research programs and expressed hope that the Wisconsin model for transferring technology about cancer pain management would be useful to others.

Workshop Sessions

In the afternoon and evening, work groups met to prepare proposals for the comprehensive action plan. They focused on the following areas:

Patient, family and public education
Medical, nursing, and pharmacy education
Continuing education for practicing physicians, nurses and pharmacists
Clinical care
Regulatory and legislative barriers
Research and evaluation
Coordination, implementation and follow-up.

The next morning, workshop chairpersons reported to all the participants on the various groups' proposals and recommendations.

Demonstration State Designation -- Governor's Proclamation

In a closing ceremony, Dr. Stjernswärd designated Wisconsin a WHO Demonstration State for developing a model that could mobilize a state-wide multi disciplinary effort to improve cancer pain management. WHO found the Wisconsin effort unique in that the initiative for improving the use of controlled substances came from the Controlled Substances Board. He also presented the Initiative with a large WHO Freedom From Cancer Pain exhibit, and he, in turn, was presented with a proclamation signed by Wisconsin Governor Anthony Earl, proclaiming December 6 a day dedicated to improving cancer pain management.

Follow-up Activities

A Steering Committee, composed of workshop chairpersons, will guide the development and implementation of recommendations. Some of these are already being implemented. They include:

Preparation of a patient education brochure
Expansion of existing cancer information services to include cancer pain
Preparation of a "how-to" handbook of cancer pain management for professionals
Publication of a newsletter to maintain a state communications network
Planning for professional symposia.

A special committee, chaired by Charles Cleeland of the Neurology Department at the University of Wisconsin-Madison, will coordinate cancer pain research initiatives and prepare an evaluation model.

After the Session, we received numerous letters and other personal communications from the participants indicating that follow-up activities are occurring. Even before the first meeting of the Steering Committee, in January 1987, cancer pain meetings were held in hospitals and the Cancer Centers, progress reports had been written to several groups of cancer professionals, and new collaborative research proposals were being prepared among several institutions across the state. Judy M. Diekmann expressed this enthusiasm in her report to the deans and directors of the Wisconsin collegiate schools of nursing:

The atmosphere of the conference engendered mutual respect and collaboration rarely seen between health professionals. No opinion or possible solution was too trivial. Each member of the conference left Wingspread with a feeling of pride for what we had accomplished in two days.

News Coverage

In addition to the preparation of an action strategy, a principle goal was to raise the awareness of the public and professionals through effective media coverage of the Session. The Initiative staff worked with the news media and the public affairs staff of the University of Wisconsin, the Medical College of Wisconsin and the Marshfield Clinic in north-central Wisconsin to arrange news releases, interviews, and broad press coverage of the Strategy Session. Two major press conferences were held the day before the Session at the University of Wisconsin-Madison and at the Medical College of Wisconsin in Milwaukee.

The resulting television, radio and newspaper reports have been gratifying; they covered the entire state, both urban and rural, as well as parts of Illinois, Minnesota, and Iowa. "Cancer Pain: Why Do We Let People Suffer So Much?" "Managing Cancer Pain: Model To Be Developed Here," "Wisconsin to Lead Efforts in Reducing Cancer Pain," are just a sample of the headlines that appeared in various newspapers. These articles made it plain that attitudes about cancer pain and addiction are a major barrier to effective pain management and discussed Initiative plans to educate professionals and encourage cancer patients to ask for better pain relief. Several newspapers quoted the following by Dr. Stjernswärd:

Patients suffering from cancer pain should expect doctors to prescribe the medication needed to relieve pain. But if need be, their families must take it upon themselves to ask and even to demand that drugs be prescribed.

We were particularly pleased that the Wisconsin State Journal lent its support to the Wisconsin Initiative. An editorial appearing in the January 7 issue, headlined "State in Forefront of Cancer Pain Fight," says that "Wisconsin can be proud of its role in a new international health project" The article goes on to discuss the problem of under utilization of analgesics and the solutions as set forth in the WHO Guidelines. "While nothing can eliminate the emotional suffering of losing a family member to cancer, health professionals must use every weapon available against physical suffering. Wisconsin is taking the lead," the editorial concludes.

Since the media can influence public attitudes, it seems the process of changing attitudes in Wisconsin concerning cancer pain and addiction has finally begun.

Support from Families of Cancer Victims

Following the Strategy Session, we received several letters from families of deceased cancer victims such as the following:

Recently I read a news story on managing cancer pain. I watched a person who was very close to me suffer needlessly from cancer pain. It is shocking to think that street addicts can get narcotics while innocent victims of cancer who are dying in pain are denied access to them.
(From Rio, Wisconsin)

When I read the enclosed news release I said, "It's about time!" My husband developed colo-rectal cancer and had surgery in 1976, was given chemotherapy until he finally died in 1984, but only after two years of hell. This new program will not help my husband and many others who have gone through the humiliation of being treated like an addict. I am confident the program will give others a better quality of life for the short time they may have left. God bless anyone concerned with this new idea.

(From Spooner, Wisconsin)

In two years, the Wisconsin Initiative for Improving Cancer Pain Management has grown from an idea to a statewide initiative with broad participation, specific goals, and momentum. We have reached this stage without legislation and with relatively few resources. Now comes the next hard part - actually closing the gap between what we know and what we do about cancer pain and then evaluating the results.

Suggested Readings

Bibliography on cancer pain. Wisconsin Initiative for Improving Cancer Pain Management. Madison, Wisconsin, June 1986 (unpublished).

Chi, Keon S. Prescription drug abuse control: the Wisconsin approach. Innovations. The Council of State Governments, 1983.

Epidemiology of cancer pain: a review of studies. Wisconsin Initiative for Improving Cancer Pain Management Madison, Wisconsin, June 1986 (unpublished).

Matrix analysis: what are the factors that contribute to the cancer pain problem? Wisconsin Initiative for Improving Cancer Pain Management. Madison, Wisconsin, June 1986 (unpublished).