Our Bodies, Ourselves (143 page)

Informed consent is a process of communication between you and your health care providers during which you learn all of the necessary information to choose whether you want to undergo a test or treatment. The concept of informed consent is founded on two fundamental propositions:

• It is your body, and you should be able to decide what is done to it.

• You are likely to make a better decision about your care if you have and can understand information on which to base a rational decision.

No one can treat or even touch you until you make an informed decision to accept or reject treatment. When you and your health care providers take informed consent seriously, you can have a true partnership with your caregivers, with shared authority, decision making, and responsibility.

In order to make an informed choice, you need to understand:

• Your specific health and illness situation

• The recommended treatment or procedure

• The risks and benefits of the recommended treatment or procedure, with a special emphasis on the risk of death or serious disability

• Medically reasonable alternative treatments and procedures, together with the risks and benefits of each

• Likely results if you refuse any treatment

• Probability of success, and what the health care provider means by “success” (for example, will the treatment cure the condition, or will it only alleviate symptoms?)

• Major problems anticipated in recuperation, including how long it will be until you can resume your normal activities

• What equipment or personal support you may require during your recovery

• The cost of the treatment or procedure, and how much of the cost your health plan will cover

Informed consent is a process, not just a written sheet to be signed. For consent to be informed, you must understand all that is being explained. It is not enough for a physician or another practitioner to catalog the risks and benefits in a hasty or complicated manner, to do so when you are under the effects of medication, to speak to you in a language you do not understand well, or to rely on a child or another family member to translate rather than a professional interpreter.

The consent form itself can be used as evidence of consent, so do not sign it if you do not understand and agree with what is written. You may cross out, reword, or otherwise amend a prepared form. Consent forms may sometimes be too technical in their language or be provided at a time when you are not prepared to review them thoroughly and discuss their implications. Hold on to the form until you feel you have all the information you need in order to add your signature.

You also have a right to know if a medication is being used for a purpose not approved by the U.S. Food and Drug Administration—otherwise known as “off-label” use. Ask your health care provider or a pharmacist for this information. You can also check drug reference books found in local libraries, online sources such as the FDA's website, or the medication's package insert for the approved purposes. Physicians and other providers are legally allowed to use medications for any purpose, even if the FDA has not reviewed evidence for that purpose. Because many routinely used obstetric drugs, many hormonal preparations, and some psychiatric drugs are given for purposes not specifically approved by the FDA, it is especially important for women to understand and ask about such off-label use.

Informed consent is particularly important when the treatment offered is part of a clinical trial or research program. In research settings, where you may be given an unproven or experimental drug or other therapy, practitioners must follow federal regulations that govern such research. The researcher must give you a copy of any informed consent form that you sign, as well as the name of a person who can provide you with additional information, and should review any potential harms from participation. You are never obligated to participate in research. Even if you decide to, you can change your mind at any time.

If the research project that you are asked to participate in includes treatments or diagnostic tests, it is important to ask whether the institution conducting the study will provide and pay for treatment, including treatment for conditions that may be found by the tests. You can learn more about the protections for patients involved in clinical trials at clinicaltrials.gov.

You have a legal right to refuse any medical treatment at any time, even if you agreed to it previously. This right applies to all competent adults and mature minors—those who can
understand and appreciate the information necessary to give informed consent. Simply disagreeing with your provider's recommendation does not mean that you are incompetent. In life-or-death matters involving decisions for others who are unable to decide for themselves, individual providers and hospitals may try to resist your choice to refuse treatment on behalf of them. All states have passed laws that allow people to authorize the withholding or withdrawal of medical treatment, even though such an order may lead to their death. Accepting one part of a treatment plan does not mean that you must accept the whole thing. You always have the right to leave the hospital if your wishes are not respected (with the exception, in some cases, of a psychiatric facility). Enlisting the support of a family member or some other advocate may be particularly helpful in such situations. For more information about refusing treatment, see
The Rights of Patients: The Basic ACLU Guide to Patient Rights
by George Annas (see Recommended Resources).

The right to refuse treatment is of particular importance to women regarding our reproductive autonomy. While it is generally recognized that people have a right to bodily integrity and informed consent, both legal decisions and political actions have dictated that women sometimes lose these rights upon becoming pregnant. Examples of such actions include court orders forcing women to undergo cesarean sections and medical tests performed without consent. In several cases, pregnant women who have refused a recommended cesarean section or who have used drugs have been arrested and charged with endangering fetal health.

National Advocates for Pregnant Women (NAPW) (advocatesforpregnantwomen.org) is a national nonprofit organization that advocates on behalf of all women, especially those who are most marginalized and most likely to be targeted for these punitive actions: women of color, low-income women, and women who use drugs. NAPW uses a variety of strategies, from litigation and public education to organizing on the local and national level, to ensure that women do not lose their constitutional and human rights as a result of pregnancy or under the guise of “fetal rights,” children's rights, or family protection. For more information
about NAPW.
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One of the first health care choices we make is choosing a health care provider. You can get reproductive and sexual health care from many kinds of care providers including family medicine physicians, obstetrician-gynecologists (obgyns), midwives, and nurse-practitioners. For information on kinds of maternity care providers, see “Choosing a Practitioner and a Place for
Your Birth.”

While most insurance plans require members to choose a primary care provider to coordinate care and make referrals to specialists, obstetrician-gynecologists and nurse-midwives can usually be contacted directly without a referral and in some cases can act as your primary care provider, making necessary referrals for other health concerns. The recently adopted national health reform law will expand the number of health insurance plans that must allow direct access to an ob-gyn without a referral.

Good health care providers will work to create a relationship with you based on mutual trust and respect. They will provide accurate, unbiased information and address your questions and concerns. They will ask detailed questions about your health history and sexual history using safe, nonjudgmental language. To find a good health care provider, learn as much as you can about the practitioners in your area by asking health care providers you respect whom they recommend. Also talk to friends and check consumer reviews and feedback online.

© Jörg Meyer

Here are some questions to consider when choosing a health care provider:

• If you have insurance coverage, does it cover the provider you are considering?

• What is his or her training and experience? Is she or he board certified in her/his specialty?

• Is the provider licensed in your state? State licensure databases will often provide the educational background of, any specialty certifications of, and any disciplinary actions taken against the provider.

• Is the provider female or male, and is that important to you?

• Is she or he familiar with any special health problems or concerns you have?

• Does the provider participate in a database that tracks and reports clinical outcomes or is she or he willing to discuss these data?

• How long will you have to wait for an appointment? Are evening or weekend appointments available for routine visits? How easy is it get to get an appointment for an urgent medical visit?

• If you have an urgent medical need and your chosen provider is not available, who else in the practice would see you, and are you comfortable with your provider's colleagues?

• How long is a typical appointment slot? Will the provider take the time to explain health issues to you?

• Is the provider willing to communicate with you on the phone or through email?

• What is the provider's relationship with industry? (For example, is a conflict of interest policy in place with regard to the pharmaceutical industry?)

• Is the provider attentive to needs related to your culture, race, gender identity, age, disability, or sexual orientation?

• Does she or he speak your language or provide a medical interpreter?

• Will she or he support your use of complementary, alternative, and traditional medicine?

• Is the office accessible for your disability or size?

• Is the office in a convenient location?

Many of us hope, and often believe, that female physicians will be different from their male colleagues—perhaps by listening better and being more understanding or caring. Unfortunately, female physicians emerge from the same stressful and sometimes dehumanizing medical training process that affects all doctors. Once in practice, female physicians face the same financial and time constraints as male physicians and thus may disappoint us in similar ways.

At the medical plan I belong to, I chose one of the two women doctors because I believed a woman would be less likely to push drugs and surgery and would look with me first for the less invasive nonmedical alternatives. In the first visit, she suggested not only thyroid medication but also a routine X-ray; she talked crisply, rapidly, coolly, with many complicated medical terms. I felt as if I were sitting across from a medical school curriculum
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Although you cannot assume that a female physician will be better than a male physician, there may be some relevant differences. Studies have found that female physicians spend more of the visit on preventive care and counseling than male physicians and patients of female physicians report higher satisfaction with their care.
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In addition, women who go to female doctors are more likely to be up-to-date on screening tests including Paps.
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At present, most nurse-practitioners and nearly all midwives are women. While they often learn in a hierarchical learning model similar to that for physicians and face some of the same constraints as physicians, their training often emphasizes woman-centered and holistic care, and they sometimes have more flexibility and time to provide care. Typically nurse-practitioner and midwifery education places a strong emphasis on prevention and wellness as well as the assessment of common health problems.

In the end, the sex of your provider matters less than his or her style, approach to health care, and ability to provide you with the kind of care and communication you need. Take the time to interview and ask your provider about her or his attitudes toward care and common practices. Don't be afraid to change providers if you do not feel that you have a good match.

The doctor-patient relationship is often one of inequality, an exaggeration of the power imbalances inherent in many client-professional relationships in our society. While some doctors take a more participatory and egalitarian approach to care, many still work within a paternalistic mind-set and make assumptions about patients who don't “cooperate” easily. If we forget to mention a detail about a prior symptom or diagnosis, we are “bad historians.” If we choose not to take a drug prescribed or can't afford to finish a treatment plan we are “noncompliant.” If we seek a second opinion, do our own research or suggest a test, diagnosis, or treatment, we are “difficult patients.” And if the doctor cannot figure out the cause of the condition, it must be “all in our heads.”