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1990 Dahl JL, Joranson DE. The Wisconsin Cancer Pain Initiative. In: Foley KM, Bonica JJ, Ventafridda V. Advances in Pain Research and Therapy, Volume 16. New York: Raven Press, 1990:499-503.

The Wisconsin Cancer Pain Initiative

*June L. Dahl and +David E. Joranson

*Department of Pharmacology, Steering Committee of the Wisconsin Cancer Pain Initiative. University of Wisconsin-Madison Medical School.

+Madison, Wisconsin 53706: Controlled Substances Board. Wisconsin Cancer Pain Initiative. Wisconsin Department of Health and Social Services, Madison, Wisconsin 53705

Pain associated with cancer is a major cause of human suffering. More than two-thirds of cancer patients will experience pain at some time during the course of their disease (1,2). It has been estimated that 50% to 75% of those with pain are inadequately treated and that in the United States nearly 25% of all cancer patients die with severe unrelieved pain (2). Such suffering does not need to occur because almost all cancer pain can be relieved if currently available pain management techniques are properly applied.

Unfortunately. cancer pain is often undertreated because health professionals are not adequately trained to assess and manage pain and because they have excessive concerns about opioid side effects and addiction (3). Patients share these concerns and often assume that pain is an inevitable and essentially untreatable concomitant of cancer (4).

The Wisconsin Cancer Pain Initiative is a voluntary statewide effort by health professionals, educational institutions, clinical care facilities, and regulatory agencies working to overcome the knowledge deficits, attitudinal factors, and barriers in the health care system that are responsible for the undertreatment of cancer pain.

The Wisconsin Initiative began as a response to legislation introduced into the United States Congress to make heroin available to treat pain in terminally ill cancer patients -- a bill driven by the frustrations of members of Congress who had watched friends and loved ones die in agony from cancer and by the mistaken idea that heroin was some pain-relieving magic bullet. Most severe cancer pain can be relieved with morphine and in reality heroin is a prodrug that owes its analgesic efficacy to the morphine to which it is rapidly converted (5,6).

The Wisconsin Controlled Substances Board, the state's drug regulatory authority, carefully scrutinized the heroin bill. The Board's initial concerns were regulatory in nature because passage of the legislation would have required it to authorize physicians to prescribe and pharmacists to dispense this Schedule I drug. Upon further consideration and consultation with experts in the cancer pain field, the Board was struck by the seriousness of the cancer pain problem and by the absence of any visible national response except for legislative efforts to legalize heroin. The Board also realized that it might have contributed to the problem: in its development of a model program to control prescription drug diversion and abuse, it had sent messages to physicians that "liberal" prescribing of controlled substances would brings them under the scrutiny of regulatory authorities. The Board recognized the need to strike a balance between concerns about drug abuse and the need to assure the appropriate use of controlled substances for legitimate medical purposes. It ultimately decided to couple its opposition to the heroin bill with a positive response: to work to develop a comprehensive program to improve the management of cancer pain in a way that heroin's availability could not possibly do.

In January 1985. the Board assembled a small group of individuals with expertise in the area of cancer and cancer pain. The group reviewed the evidence that documented the problem in Wisconsin and other states and the barriers to effective cancer pain management that had been documented in the literature. A preliminary proposal was developed. It was decided that the best way to focus attention on the cancer pain issue and develop approaches for confronting the problem was to hold a statewide strategy session. That meeting, held in December 1986, was cosponsored by a broad range of health care facilities and organizations, institutions of higher education, and government. International and national experts convened with a core group of committed Wisconsin professionals to develop a comprehensive statewide action plan (7).

Following the strategy session, the effort was broadened by engaging the many individuals and institutions that care for and interact in some way with cancer patients and their families. The Initiative's approach is to build its program into existing institutions and identify and strengthen the commitment of those health professionals in the state concerned about the inadequate treatment of cancer pain.

A number of ad hoc committees have been working in cooperation with Initiative leadership and staff to implement the comprehensive action plan developed at the strategy session. Progress has been made in several areas.

PATIENT, FAMILY, AND PUBLIC EDUCATION

The Cancer Information Service, a toll-free cancer counseling service funded by the National Cancer Institute. has expanded its service to answer questions about cancer pain. Counselors now receive extensive training about cancer pain management. Calls about cancer pain have increased 120% since the Strategy Session.

A patient education booklet. Cancer Pain Can Be Relieved, has been written by a committee of Initiative members. It is a concise, easy-to-read question and answer booklet that addresses the fears of patients, provides practical tips for talking with doctors and nurses. and stresses that cancer pain can be relieved. The Initiative will be working with the American Cancer Society-Wisconsin Division, the Cancer Information Service, the Wisconsin Pharmacists Association, the Wisconsin Oncology Group, the Wisconsin Hospice Association, the State Medical Society, Wisconsin nursing home and home care organizations, and others to achieve widespread distribution of this booklet.

A table-top educational display for health care consumers, patients, and families has been completed and is in constant demand.

An educational booklet for the families of children with cancer has been written.

A booklet for adolescents has been developed. This patient group, targeted by antidrug abuse messages, needs to be assured that it is all right to take drugs for pain. Because adolescents with cancer must often undergo painful procedures, the booklet would also emphasize nondrug pain relieving techniques, such as distraction, relaxation, and imagery.

Cancer pain has been the featured topic at numerous lectures and programs offered to the public.

PROFESSIONAL EDUCATION

A bimonthly newsletter, Cancer Pain Update, has been developed to serve as a communications vehicle for Initiative members and to maintain the network of professionals committed to improving management of cancer pain.

An informational brochure describing the Initiative has been produced.

The Handbook of Cancer Pain Management, a pocket-sized reference book, has been written to provide health professionals with immediate, treatment-oriented information about diagnosis and management of cancer pain. A special section is devoted to treatment of cancer pain in children.

A curriculum for continuing education, patterned after the Handbook, has been developed and a companion videotape prepared.

A table-top display for health professionals has been produced. It emphasizes that good pain management requires a team effort on the part of doctors, nurses, pharmacists, and social workers.

Attitudes and knowledge of medical, nursing, and pharmacy students, and of medical residents have been surveyed.

Professional education curricula at the state's medical and pharmacy schools have been evaluated and modified.

A fourth-year elective on cancer pain management has been developed at the University of Wisconsin-Madison Medical School.

Numerous meetings and conferences to educate physicians, nurses, pharmacists, and social workers about cancer pain and its management have been held.

CLINICAL CARE

A statewide network of nearly 300 health professionals willing to serve as advocates for effective pain control has been organized. The advocates work in hospitals, clinics, pharmacies, long-term care facilities, and home care agencies. They are not necessarily cancer pain treatment experts but have expressed a willingness to learn the basic principles of pain management and are committed to communicating that information to patients, their families, and other health care professionals in their care facility or geographic area. Through such a grass-roots approach, the Initiative hopes to have a positive impact on the delivery of clinical care to cancer patients in Wisconsin.

New clinical programs in cancer pain management have been established at the Medical College of Wisconsin in Milwaukee and the Marshfield Clinic in rural north central Wisconsin. Both programs provide 24-hr hotline service to the public and health professionals.

A network of physician role models is being established in the state in collaboration with the family medicine departments at the two medical schools. Recruitment priority is being given to physicians who supervise medical students or housestaff either in an academic hospital-based setting or in office-based private/group practice. Physician role models will be expected to become members of the advocate network. Inappropriate physician attitudes and prescribing behaviors are a major impediment to adequate cancer pain control. Prior efforts to improve cancer pain management through the use of standard educational tools (such as journal articles, continuing medical education courses, and lectures) have not been successful in modifying physician behavior. Through the development of physician role models, the Wisconsin Initiative hopes to make cancer pain management a legitimate part of medical practice in the state.

REGULATORY, LEGISLATIVE ISSUES

The Wisconsin Controlled Substances Board in cooperation with the Wisconsin Cancer Pain Initiative has reviewed state laws and regulations for impediments to adequate prescribing of drugs for cancer pain.

The pharmacy regulation limiting the amount of a Schedule II narcotic that can be dispensed per month to 120 dosage units or a 34-day supply (whichever is less) is confusing; some physicians and pharmacists interpret a dosage unit to mean a tablet. Steps are being taken to clarify the issue.

In addition, the medical rule governing prescribing of amphetamines does not clearly permit use of these drugs to treat sedation, which may be a side effect of opioids used to treat severe pain. Efforts are under way to clarify this issue as well.

The Wisconsin Cancer Pain Initiative has endorsed an addition to the drug laws of each state that would clarify that the law does not prevent physicians from treating chronic cancer pain with opioid drugs for extended periods.

In addition, the Board has worked with state professional licensing agencies and professional associations to provide clarification to health professionals that cancer pain management is a priority in Wisconsin.

It would appear that the Wisconsin Initiative has made considerable progress in the past 2 years: a pain management handbook, patient education booklets, and table-top displays have been completed. A bimonthly newsletter has become a reality. The pharmacists of the state are organized, the nursing profession is mobilizing its forces, and plans are under way to recruit and train a whole new generation of physicians. A network of patient advocates has been organized, and two new pain management programs have been put in place. The media have been very supportive of the Initiative's goals, and numerous stories about the program and its message have appeared in newspapers and on radio and television throughout the state. Nevertheless, we still face formidable challenges, and all of these efforts will have been in vain if we do not succeed in changing clinical practices so that there really are improvements in the management of cancer pain in Wisconsin. That is the challenge that will keep Initiative members occupied for many years to come.

REFERENCES

  1. Foley KM. The treatment of cancer pain. N Engl J Med 1985:313:84-95.
  2. Daut RL. Cleeland CS. The prevalence and severity of pain. Cancer 1982:50:1913-1918.
  3. Cleeland CS. Barriers to the management of cancer pain. Oncology 1987(suppl): 19-26.
  4. Levin DN. Cleeland CS. Dar R. Public attitudes toward cancer pain. Cancer 1985:56:2337-2339.
  5. Lasagna L. Heroin: a medical "me too. " N Engl J Med 1981;304:1539-1540.
  6. Kaiko RF. Wallenstein SL. Rogers AG. Grabinski PY. Houde RW. Analgesic and mood effects of heroin and morphine in cancer patients with postoperative pain. N Engl J Med 1985:304:1501-1505.
  7. Dahl JL. Joranson DE. Engber D. Dosch J. The cancer pain problem: Wisconsin's response. A report of the Wisconsin Cancer Pain Initiative. J Pain Sympt Manag 1988:3(suppl):515-520.