When Women's Pain is Ignored
By: Nancy F. Petersen, RN
For many years there has been the awareness that women utilize the healthcare system more frequently. Assumptions have been made on both sides of this issue: this utilization may have preventive value resulting in longer life; or this "over" utilization is wasteful, and is about psychological issues and being female.
Our experience with the St. Charles Medical Center Endometriosis Treatment Program has been that 75% of the women we see have been dismissed as neurotic after multiple treatment failures. Virtually all have active, painful disease when excised and pathology verified. The recurrence rate long-term is less than 19%.
In Oregon recently, the press reported two cases of attempts to control utilization (both were women) by provider organizations that had devastating outcomes. One, a woman in her 70s with symptoms in one hand and arm indicating loss of function and neurological impairment, was recommended for surgery by a board certified neurosurgeon. The medical gatekeepers for her HMO denied surgery and allowed physical therapy. This pianist and piano instructor permanently lost the use of her lower arm and hand.
The second was a woman who presented to her primary care provider three times over a relatively short period of time for complaints of chest pain. On her third visit, the primary care provider made arrangements for a referral, 10 days later. Shortly before the referral, the patient collapsed and died.
While both of these cases are antidotal and had some financial settlement, most likely both would have preferred to prevent the losses initially. Tort reform may reduce liability in situations in which significant loss has occurred and where accountability for care providers and outcomes should be greater.
Having worked in the healthcare field for 35 years, I cannot recall the number of times I have heard or seen active, overt references to the dismissal of women's complaints and/or symptoms, often in the presence of abnormal physical findings and/or loss of function, These obvious physical findings may not fit a clear disease definition as we know it, have been labeled as "neurotic," "hysterical," "conversion reactions" and/or "insignificant"
In Eastern medicine, early intervention is prized and thought of as a preventative tool or maintaining wellness. Western literature is replete with reference to anxiety, psychosomatic, psychogenic, and Munchausen syndromes in women. In the absence of a prevention and/or early intervention approaches and gender specific research, these attacks on the veracity of what women report to their health care providers must be suspect.
In the May/June, 1996 issue of Health Care Forum Journal, "Metaphorically Speaking," Marta Clark PhD., medical anthropologist and former NAWHP Board member, raises some important points about metaphors in healthcare. "The language of medicine is unabashedly and stereotypically male," and "language symbol, and metaphor are not simply inconsequential, benign figures of speech. They motivate human behavior." She further notes that hard facts are essential to many healthcare practitioners in the delivery of care and they feel naked and impotent in their absence. Since wellness or disease occur on a continuum and are not necessarily black and white, one has to wonder at the ease at which subtle changes are dismissed in women.
What options are open to women who are certain they have active disease present and they find that such categorization or bias has closed all doors?
Women will take one of two roads. The low road finds that they have gone silent, lost their voice and are in angry despair over their sense of victimization by the system. They may have accepted the diagnosis but feel boxed in by the network of care providers and referrals they have seen. They express that bias preceded the referral and the "science of medicine" was absent from the interaction. They are angry and/or filled with hopelessness and despair. Their potential as people, mothers, professionals, women is at risk.
Others, angry and filled with despair, have used these emotions as tools to open new avenues to traverse the high road, the road less traveled, so to speak. From observations of their actions, literature review, and some personal experience, I believe there is a new kind of healthcare recipient already emerging. They are refusing to be victimized, are recruiting both personal and high-tech help, and/or have developed communication skill sets that shift the balance between recipient and provider (showing the provider the way without offense and without acknowledging what they are really doing).
Among the tools I now see increasing in use are healthcare advocates (professional or lay people); direct neutral need-focused communication; Med-line/Internet information searches; angry partners; threats of litigation; and industry lingo and profile used by patients to their advantage in communicating with care providers.
The first time I met a healthcare advocate was in 1987 when she accompanied a patient to St. Charles in Bend for surgery. I found myself wondering how I felt about this: intimidated, irritated, or curious? I decided it was nervous curiosity. Before we began our clinical discussion, I asked her to explain the advocate's role, how she wanted our organization to interact with her, and who was to be the primary communicator. It was a very positive experience. Each situation since has been a little different depending on the advocate's background and the patient's needs, Professional advocates may not travel with the patient but seem to have the ability to see beyond the bias, use the scientific processes they were taught to draw their own conclusions, and become a facilitator to new levels of care.
Patients are becoming self-need focused; asking for what they want, need, feel, and think, using "I" statements. They have begun organizing their medical histories without emphasis on past experiences that do not pertain to the current situation, even when the experiences are responsible for substantial emotional or physical injury. At times they intentionally omit information that may bring bias into the discussion. They are learning to seek clarity from caregivers: "What I heard you say was..."
Med-line or Internet searches of symptoms, function loss and differential diagnosis from the past give patients new tools for communication and often help them begin to sort out what is and what is not true for them, giving a little better organized history or picture.
Soon women seeking assistance for healthcare issues could have more information about their specific illness than the care providers from whom they are seeking assistance. Are we ready for this? Really ready?
Personal relationships suffer in these situations as well. Sometimes a partner can be an advocate, communicating clearly the boundaries around labeling and communication styles with the caregiver on the patient's behalf. Other times patients may find that their personal relationships are better served and preserved if they use an unrelated advocate, sounding board and/or professional counseling for their frustrations. A partner or a close circle of friends can become saturated or overwhelmed with the needs of their ill partner/friend in long-term illnesses or healthcare problems. Sometimes women need to process out loud, obtain feedback, check their thinking and do not need intervention. One psychologist related a case where a woman returned to counseling and stated she was suicidal over her health issues. Deeper questioning revealed the patient had researched hundreds of cases, confirmed her own diagnosis and was exhausted. She overlooked the obvious. She needed a new care provider/advocate.
Threats of litigation are never a good tool but I am aware of a recent situation where lost MRI films threatened to derail a scheduled intervention on a tumor that had taken 13 years to diagnosis. The fact that the customer had spent $4000 on the MRI was lost on the film supervisor who refused to make duplicates. No films, no intervention. The situation was quickly resolved when the patient gave the film supervisor a choice of producing the film copies for the patient or her attorney with a subpoena in hand and a $400 per hour meter ticking.
I have seen patients and/or family members become quite sophisticated in the use of medical language around risks, outcomes, risk management, percentage of cure, quality of life. They are partnering more with care providers, asking questions like "How do we get to the bottom of this?" Sometimes care providers and patients will review literature together. Once a diagnosis has been established and treatment initiated, the care provider will use the case as a teaching tool through sharing discharge summaries, or in unusual cases publishing a paper, noting the process to diagnosis, intervention and outcomes as well as quality of life restoration.
Even when the patient does not fit the profile of drug user, abuser of emergency rooms and/or doctor appointments, and interventions in general, care providers and patient supporters can find themselves doubting the reality of what they see in long-term illness. The patient must learn not to internalize or judge themselves when this occurs. Complex problems are draining and these temporary doubts will pass.
What is missing here is the ability to listen and to understand that adverse life impact is present. While clear disease entity may not yet be identified, the patient's needs are still present and realized. We may be thinking, seeing, contemplating in the wrong gender when we consider what the patient presents, as gender specific information for women is still in its infancy.
Blaming, victimization, despair, and hopelessness have no role in reducing the problems around ignoring women's pain; nor does intensification or exaggeration of symptoms. With an empowered approach, women can do what they do so very well; bring together a multi-dimensional toolbox and thought processes to get clarity and resolution around their healthcare needs. Resolution is not always about cure but a sense of peace around living life fully with what they are able to achieve in the way of health, mobility, comfort and resolution.
What is needed as we move into literally a new age of healthcare delivery on many levels is the ability to listen; the necessary humility to acknowledge that we might not know right now what is going on; the compassion to seek support and empowerment for those who are suffering; the stamina to stay with the patient for the long haul; and the vision and understanding that this illness may represent opportunity for emotional, spiritual and intellectual growth. We can be the facilitators of that journey.
What I worry about in capitation, controlled utilization, etc. is lost potential for women who may be forced to take the lower road or who do not know the way to the higher road. We must be vigilant. We must draw the maps.
NANCY F. PETERSEN, RN
Biographical DataEducation
1959-1962 Tacoma General Hospital School of Nursing
University of Puget Sound; Tacoma, Washington
1955-1959 Raymond High School; Raymond, WashingtonEmployment
1974-present St. Charles Medical Center; Bend, OregonPositions Held
Leader/Manager Medical Services 1994
Chair, Research and Development 1985-1994
Director, Endometriosis Treatment Program 1986 to present
Evening Supervisor 1980-1987
House Float Nurse and Relief Supervisor 1979-1980
Staff Nurse ICU/CCU 1974-19791970-1974 Portland Diabetes Clinic; Portland, Oregon
Position Held
Manager1962-1970 Good Samaritan Hospital and Medical Center; Portland, Oregon
Positions Held
Patient Care Coordinator/Clinical Supervisor 1967-1970
Head Nurse, Neurosurgery 1965-1967
Evening Charge Nurse, Neurology/Neurosurgery 1963-1965
Staff Nurse, Intensive Care & Neurology/Neurosurgery 1962-1963Presentations
New Horizons in the Treatment of Endometriosis
NAWHP/CDC, Joint Conference, Atlanta, Georgia, October 1994Endometriosis: Unprecedented Success Rate
National Association of Directors Women’s Health Programs
Annual Convention; Chicago, Illinois; 1988, 1989, 1990, 1994Endometriosis Reconsidered
Endometriosis Association Chapters; 1988, 1989, 1990, 1991, 1992, 1993, 1994, 1995Endometriosis Alliance of Washington, DC; 1989, 1991
Canadian Endo Society Chapters; 1988, 1989, 1990, 1992, 1993, 1994
Endometriosis Presentation; Reproductive Health 1989 Conference
Seattle Westin Hotel; Seattle, Washington; April 1989Chronic Pain Management; The Riverside; Bend, Oregon; 1987
The Expanded Role of the Nurse, Keynote Speaker
Annual Meeting of American Society of Internal Medicine; Dallas, Texas; 1973Problem Oriented Medical Records
Iowa Hospital Association; Des Moines, Iowa; 1972Publications
When Women’s Pain is Ignored
NAWHP Focus Newsletter; Summer 1996Hospital Builds Center of Excellence on Endometriosis
Innovations, 1993; APCE PublicationsPsycho-social Issues for Women with Endometriosis
Women’s Health Forum Newsletter; May 1993When We Don’t Know the Answer, Let’s Not Blame the Patient
Focus Newsletter; NAWHP; November 1988Endometriosis: Obtaining Relief via "Near-contact" Laparoscopy
The Preoperative Care of the Endometriosis Patient
Association of Operating Room Nurses Journal; AORN; September 1988Endometriosis of the Bowel
US-Canadian Endometriosis Association Newsletter; May 1988Endometriosis Reconsidered
Medical Self Care; May-June 1987Innovations in Nursing
Nursing 1974Awards
Special Service Award for outstanding contributions and national leadership in women’s health; NAWHP
1993 Clinical Excellence Award from the NAWHP
1993, August Self Magazine "Endometriosis Treatment Program one of top 25 women’s programs in the
nation"
1993 American College of Physician Executives recognized the program "as an innovation and a
significant advance in medical management"
1989 For work with women with endometriosis; US/Canadian Endometriosis Association
1987 Supervisor of the Month; September, St. Charles Medical Center
1987 Employee of the Year; St. Charles Medical Center
1986 Achievement Award, Oregon Diabetes Association
1978 Employee of the Month, St. Charles Medical CenterAssociations
National Association of Women’s Health Professionals; member, past Board of Director member, Vice
President, President
Association of Western Hospitals
Women’s Healthcare Network
National Association of Female Executives
Women Entrepreneurs of Oregon
American Holistic Nurses Association
NW Organization of Nurse ExecutivesAppointments
Advisory Board; National Association of Women’s Health Professionals 1990
Advisory Board; Nursing Program, Central Oregon Community College; 1984 to present
Women’s Health America Advisory Board