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Patient Power – The Reluctant Revolution
by Merle Hoffman
When I first opened a clinic for women’s abortion care in New York in 1971, women finally had access to safe, legal abortions – even before Roe v. Wade decriminalized abortion across the country. New York State had acted to decriminalize abortion in 1970, so we were already a step ahead. Doctors could now treat patients in a respectful environment, away from the back-alley secrecy and lethal dangers. But this was also an era when doctors, almost all male, were often patronizing and imperialistic. In order to change that power dynamic for the women in our clinic, I realized that the historically accepted roles for doctors and patients also needed a revolution.
In my upcoming memoir, Intimate Wars, I describe how I came to define a new advocacy for patients.
Below is an excerpt from “Intimate Wars.”
I was having a routine gynecological exam something I did every year, but I was feeling vulnerable and uncomfortable, my legs spread, the paper gown just barely covering my breasts as I breathed deeply in and out. “Just relax and be patient,” the doctor said while his gloved finger searched and poked inside me. “Be patient.”
What an unbearable request, I thought. I never had much patience as a child, woman, or patient; I never wanted to wait for anything. The word “patient” originally referred to a “sufferer or victim,” an older definition that shares meaning with the modern usage of “patience”: to “suffer and endure, bearing trials calmly without complaint,” to manifest forbearance under provocation. I was beginning to understand that women have always been the ultimate patients in this sense of the word, bearing centuries of injustice as we’ve waited for equal rights, economic parity, suffrage, freedom from violence, legal abortion. There has always been something else, one more thing to be accomplished, a war to end, an election to win, before the legal, political, and social gaze can be turned toward women.
In my own clinic, I found that sometimes it was the most committed of the physicians who were the most misogynistic -- though they never saw it that way themselves. They were just doing what they had been taught, and at that time being a male doctor meant being in charge, in control of the interaction and the procedure. Doctors were members of a brotherhood; their authority, power, and good intentions were never questioned by anyone, including themselves. I began to grasp that many of the good-hearted male doctors supporting the clinic didn’t see abortion in the context of a woman’s right to control her reproduction, and thus her life. It was more of a way for them to control women’s messy, complicated bodies.
Often, the problem started early. Most women were examined by a man before they had intercourse with a man. Even in that time of liberation, women held too much of the shame and fear that the previous generation had felt with regard to their bodies, especially their reproductive systems. Being a woman meant you were immediately pathologized, that control over your body was not in your hands. Menstruation, sex, pregnancy, abortion -- everything had to be explained by doctors.
With her doctor, a woman had her first vaginal examination, chose a contraceptive device, was guided in her decision about whether to bear children, how to bear them, how to raise and feed them. Women were completely dependent upon the doctor’s knowledge and in a sense forced into a position of trust. All this resulted in women remaining powerless and having things done to them rather than with them.
And yet, abortion clinics were poised to be platforms for change. This new field of medicine provided the opportunity for a restructuring of power dynamics and a woman-centered approach to medical care. In the early 1970s, many minority and special interest groups were exploring their own histories and asserting their rights. Acknowledging patients as a class with rights and responsibilities seemed to me an appropriate analytical and political vehicle for combating the victimization of female patients by a generally male medical establishment. The most radical aspect of abortion -- then legal in just a few states, but soon to be legal nationwide -- was the potential for women to turn this situation on its head.
To start, I made sure patients were never left alone with the doctor. A counselor or I stayed with the women throughout the entire procedure, fielding their questions and making them comfortable. I was especially good with hostile patients who would answer a question with, “It’s none of your business,” or “Who the hell are you to tell me” -- the ones who had an innate distrust of authority.
Thinking that casual humor helped relax patients, some doctors would make blatantly sexist remarks. “Come on, you knew how to spread your legs before you got here, you can spread them for the exam,” a doctor once chided. Another commanded a patient to keep still, saying, “Keep your backside on the table -- you should know pretty well how to do that by now.”
These types of remarks, betrayals of the trust that I had established with the patients, infuriated me. My clinic was supposed be safe from misogyny, not another place where women were attacked at their most vulnerable. When problems occurred, I would speak privately with the doctor involved. If I witnessed an instance of disrespect, I worked to neutralize it.
Saying No to the Status Quo
I realized that restricting the roles of doctors was the realistic way to facilitate productive ties between the established male medical hierarchies and my patient-centered philosophy. Rather than expecting them to consistently provide emotional support for the patients in these intense, anxious situations, I put counselors in charge of educating and psychologically supporting the patients. The doctors had only to perform the procedure, and the support staff took care of the other equally important needs of the patients.
The necessity of these counseling sessions, these safe spaces for patients, was instantly obvious. Women didn’t know how to process what was happening to them, how to organize the confusing thoughts they faced. Because this was the first time many of them had been in a room with someone who was totally focused on them, they spilled out so much of themselves: their relationships with their parents, distress over their boyfriends, fears about the future. We helped them articulate to a stranger, something that they had never verbalized -- why they did not want to be pregnant. To us, they admitted that they did not want to be mothers; that they wanted, needed, to have an abortion.
I knew that patients in any doctor’s office were usually too intimidated to ask the questions we answered in the counseling rooms. Women were rightly afraid of upsetting or angering their physicians, these men who had life-and-death power over them -- a power they would not voluntarily surrender. As Frederick Douglass said, “Power concedes nothing without a demand”; it had to be taken back by the patients. Because I knew how very difficult this could be, I suggested they bring a friend who could be there as a witness, or a tape recorder so that nothing the doctor said would be lost on the patient in her flood of anxiety. I wanted to reduce the amount of iatrogenic pregnancies, to rescue these women from the ignorance and prejudice of their doctors, but I could not be with them for every appointment. Each one of them had to be a warrior on her own.
Immersed in the world of Flushing Women’s Medical Center, I came face to face with the questions abortion forces us to ask about women’s reproductive freedom. My anger at what was happening grew. The metaphoric role of physicians as surrogate fathers and deities resulted in them communicating in a kind of code, a language that only the members of the brotherhood spoke and understood. And they were communicating about women. Making decisions for us. I viewed this as a violation of their oath “to do no harm,” a betrayal of trust, and ultimately a dangerous situation for women.
Women’s health needed a reformation, a 95 Theses to translate the language of medicine so that women would be able to make choices about their own health. By teaching women about their bodies, by sharing this sacred knowledge, it would be possible to transfer some power to the patient.
Yes, that was it: patients needed their own bill of rights. Doctors needed to know what these rights were, too -- and at Flushing Women’s, they’d better learn to respect them.
Charting A Different Dynamic
Flushed with frustration after hearing yet another horror story from one of my patients in the counseling room, I arranged for one of the counselors to stay with her while I rushed to my desk and started to write, my anger spilling out into my pen.
Patients have rights:
— The right to question your doctor.
— The right to know the background, affiliation, and training of your physician.
— The right to be advised of the reasons for medicines prescribed for you.
— The right to privacy in your consultations with your doctor and the right of confidentiality of records of your treatment.
— The right to the security and knowledge that the choice of treatments and what happens to your body is up to you.
— The right not to be intimidated by the props of medical power, i.e. fancy offices, big desks, and white coats.
— The right to regard physicians and the medical establishment as a vehicle, a resource for your own health needs.
— The right to know that rarely is there a single, unchanging medical truth. The right to be informed of current medical changes.
— The right to be assertive enough to ask what tests are being performed. Why? What do they cost? What other diagnostic choices do I have?
— The right to be in touch with options that offer divergent or philosophically different theories of treatment than the one that is being offered by your physician.
— The right to see your medical records at any time and the freedom to seek another opinion.
— Above all, the knowledge that the right of choice does exist and should be exercised.
In order to help people visualize this philosophy I created a poster with the image of god (à la Michelangelo’s Sistine Chapel) shooting RX thunderbolts from the sky at patients on the ground holding placards with quotations from my Patients’ Bill of Rights. I had it replicated and sent to all the HIP medical groups throughout the city. My referral sources, the social workers in the HIP groups, were generally sympathetic to me, and they tacked my posters up in their clinics and offices.
Needless to say, it created quite a scandal. Doctors tore them off the walls.
Witnessing their outrage, I was ever more certain I’d hit upon something true. The concept of women as consumers of medical care rather than passive recipients of treatment -- the awareness that women’s holding to traditional relationships with physicians was ultimately destructive to them individually and as a class -- led to my formulating and expanding on a philosophy that would soon become a movement. I called it Patient Power.
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