Informed Consent is Missing from Male Adolescent and Young Adult Cancer Screening

Consent, particularly informed consent, is the cornerstone of patients’ rights. Consent is based on the inviolability of one’s person. It means that doctors do not have the right to touch or treat a patient without that patient’s approval because the patient is the one who must live with the consequences and deal with any discomfort caused by treatment. A doctor can be held liable for committing a Battery if the doctor touches the patient without first obtaining the patient’s consent. (Source: Farlex Legal Dictionary "Patients’ Bill of Rights" [Redirected from Federal Patients’ Bill of Rights])

Informed consent is missing from many areas of healthcare. With new guidelines released, there has been a focus on informed consent missing for women's annual pelvic exams. Informed consent is missing from from male pelvic cancer screening as well. 

image from: Embarrassing Bodies Testicular Cancer Check

Informed Consent

One of the best resources on informed consent is Temple Health's (Temple University) "A Practical Guide to Informed Consent." It states:

Informed consent is an ethical concept—that all patients should understand and agree to the potential consequences of their care—that has become codified in the law and in daily practice at every medical institution. One of the earliest legal precedents in this area was established in 1914 when a physician removed a tumor from the abdomen of a patient who had consented to only a diagnostic procedure (Schloendorff vs. Society of New York Hospital). The judge in this case ruled that the physician was liable for battery because he violated an “individual’s fundamental right to decide what is being done with his or her body.” [Edwards 1998, Wescott 2005] 

Women's Pelvic Cancer Screening

Doctor Joel Sherman, a cardiologist and an advocate for patient dignity, had written a a November 2009 article, "Informed consent is missing from Pap smears and cervical cancer screening." In the article, he points out that women are rarely given complete information and the choice for cervical cancer screening. Here are some other articles on the topic:

• Time Magazine, "Are Doctors’ Exams a Barrier to Birth Control?"
• Mother Jones, "Holding Birth Control Hostage"
• National Institutes of Health, "Clinical breast and pelvic examination requirements for hormonal contraception: Current practice vs evidence."
• National Institutes of Health, "Pelvic Examinations and Access to Oral Hormonal Contraception"

In fact, many women are coerced in to cervical cancer screening. Physicians still require women to submit to cancer screenings and pelvic exams before prescribing or refilling of oral contraceptives, despite guidelines indicating they are unnecessary, research suggesting they can pose a barrier to contraceptive access, and NO laws requiring the invasive and humiliating exams.

One study found that 44% of clinicians who prescribe oral contraceptives admit to requiring the exam. (Source: Over-the-Counter Working Group) In reality, the percentages requiring exams are much higher. In another study, "Nearly all respondents indicated that they would perform the examination in the 55-year-old despite the absence of her ovaries, uterus, and cervix, and over half believed it to be very important for this woman." (Source: American College of Obstetrics and Gynecology "Routine bimanual pelvic examinations: practices and beliefs of US obstetrician-gynecologists")

Male Pelvic Cancer Screening; Lack of Evidence

One group that is not afforded full disclosure to make an informed decision (informed consent) is male adolescents and young adults. These exams are done more as ritual than evidence based medicine. The American Academy of Pediatrics' guideline, "Male Adolescent Sexual and Reproductive Health Care" states:

Despite the lack of evidence-based guidelines supporting routine testicular screening and teaching of testicular self-examination for detection of testicular cancer, a genital examination, including examination of the testicles, represents an important part of a male adolescent's complete physical examination during annual preventive health visits and, specifically, as part of a visit related to a genital complaint. The content of the pediatric/adolescent physical examination required to report preventive health care codes (Current Procedural Terminology [CPT] codes 99382–99384; 99392–99394) depends on age and developmental level and would be expected to include a male genital examination...

Despite the lack of recommendations that support testicular cancer screening, the USPSTF... The American Cancer Society has stated that it "does not have a recommendation on regular testicular self-examinations for all men"... An external anal inspection, a digital rectal examination, and screening for hernia as part of the male adolescent physical examination should be performed on the basis of specific concerns or complaints such as a bulging mass or pain (hernia examination), hemorrhoid or rectal bleeding (digital rectal examination), or risk factors that would warrant an external anal inspection for HPV lesions in a young man who engages in receptive anal intercourse.

Along with the the lack of recommendations that support testicular cancer screening, the USPSTF makes no recommendation for either hernia or pubertal development and other disorders. The Journal of Family Practice states "Insufficient evidence exists to recommend for or against screening genital exams for boys playing sports."

Other Reasons for Screening

The American Academy of Pediatrics' guideline, "Male Adolescent Sexual and Reproductive Health Care" further states:

The content of the pediatric/adolescent physical examination required to report preventive health care [billing] codes (Current Procedural Terminology [CPT] codes 99382–99384; 99392–99394) depends on age and developmental level and would be expected to include a male genital examination. 

Routinely examining the genitals from childhood through adolescence can help the male patient understand the routine nature of this examination component. 

Providers point to another value to doing a genital exam which is the clinician learning what the range of "normal" vs "abnormal" exam findings are and the range and variation present in human genitalia (citation needed). Is that disclosed as part of informed consent?

Respecting Patient Dignity and Autonomy

According to the American Academy of Pediatrics' guideline, "Male Adolescent Sexual and Reproductive Health Care":

Sexual health also requires a positive and respectful approach... People should be able to have pleasurable and safe sexual experiences free of coercion, discrimination, or violence. Men, along with women, have the right to be informed and have access to safe, effective, affordable, and acceptable methods of family planning of their choice and the right of access to appropriate health care services...

Trust and relationship-building are also critical elements of the male adolescent's visit that help him to feel comfortable regardless of a physician's gender and/or background.

Examination in gowns will help prevent missing important physical examination findings, such as gynecomastia or truncal acne. A 

Health care providers might be confronted with male adolescents who refuse a genital examination because of concerns about homophobia, lack of experience with such examinations, fear of getting an erection, or even because of previous abuse. 

Understanding the specific concern can help the health care provider educate the patient about the importance of this examination, determine the priority of such an examination for a particular patient, and negotiate how and when to complete the required components of the examination. Routinely examining the genitals from childhood through adolescence can help the male patient understand the routine nature of this examination component. The use of a chaperone might also be relevant and should be considered during all genital examinations for patient and/or provider comfort regardless of whether the provider and patient are the same gender.

Note: The term "informed consent" does NOT appear anywhere in the above publication.

image from: Embarrassing Bodies Testicular Cancer Check

Here are the problems that I have with genital exams for males:

• True informed consent is not present. 
• Evidence does not support exams
• Exams are rarely OFFERED, that is patient is told that they may decline.
• Gender of provider is ignored.
• Use of a chaperone is usually not a joint decision.
• Gender of the chaperone is ignored. 

Most patients have gender choice in their providers, adolescent and males especially for genital exams. The following studies that confirm patient gender preferences:  

• In a study of children 8 - 13 who needed a suture repair for a laceration. Among the children, 80 percent of girls and 78 percent of boys preferred a woman doctor, and none chose the doctor with the most experience. (Source: AMA Virtual Mentor "Patient Requests for a Male or Female Physician")
• From 901 participants, 83% chose a woman, 59% of whom selected gender or age as the reason. Single and younger patients were more likely to choose female and younger providers, respectively. (Source: American Journal of Obstetrics and Gynecology "Patient choice: comparing criteria for selecting an obstetrician-gynecologist based on image, gender, and professional attributes")
• Athletes (male or female) prefer same gender health care providers. (Source: Science Daily "Locker room talk: How male athletes portray female athletic trainers")

Doctor Sherman goes in to more detail about gender and embarrassment  in "Adolescent Boys and Genital Exams Reducing Embarrassment". This is an excellent piece, I suggest reading it. 

Dismissing the Patient

Too often the solution by providers is to dismiss the patient.

 When the patient's beliefs—religious, cultural, or otherwise—run counter to medical recommendations, the physician is obliged to try to understand clearly the beliefs and the viewpoints of the patient. If the physician cannot carry out the patient's wishes after seriously attempting to resolve differences, the physician should discuss with the patient his or her option to seek care from another physician. (Source: American College of Physicians "ACP Ethics Manual 6th Edition")

Patients are allowed to choose the level of care that they wish to receive. Threatening dismissal is only coercion and the physician NOT trying to earn the trust of the patient.

Psychological and Emotional Trauma

A study in Journal of Reproductive and Infant Psychology Volume 11, Issue 4, 1993, "Post-traumatic stress disorder in women who have undergone obstetric and/or gynecological procedures: A consecutive series of 30 cases of PTSD." highlights the psychological and emotional trauma from intimate exams.

 Forwomenseyesonly ("Gynecological Procedures Can Cause PTSD") highlights the study: 500 women took part in a study about the psychological effects of vaginal exams, pap tests, and other gynecological/obstetric procedures. Of the 500 women who took part in the study, over 100 women reported their experiences as ‘very distressing’ or ‘terrifying’. Of the 100 women who reported distressing experiences, 30 were diagnosed with PTSD. The study highlights the similarities between the after effects of rape and women’s experiences with gynecological procedures.
There is a lack of research related to PTSD following gynecological procedures. The study quoted above was published in 1993, and there does not appear to be any follow-up research specific to gynecological procedure- related PTSD published since that time. There has been some recognition in the literature given to the trauma of pap tests experienced by women with a history of having been sexually assaulted, but the trauma caused by pap tests themselves is generally ignored.
Some of the phrases used by the women who took part in the study to describe their experiences include:

"dehumanizing and painful";
"degrading and distressing";
"my opinions were dismissed as irrelevant";
"hurting and feeling violated";
"very brutal internal was excruciating";
"it felt undeniably like rape".

30 out of 500 is 6%!. Just as OB/gyn procedures can cause PTSD, there are so many other procedures (such as male genital exams) that can do the same. What about the borderline diagnosis? Those who may not have full onset PTSD, but have been traumatized none the less?

Conclusion:

The genitalia are part of the body too. They can become diseased, or give clues to disease in other part of the body. A physician who does not offer to examine the entire body during a routine physical exam is doing a great disservice to the patient. If the patient refuses that is their right, but they need to know that there is a risk of missing something serious as above.

These exams should be "offered" after discussing the associated risk factors unique to each patient while clearly be given the opportunity to decline. If they elect the exam, they should be conducted privately without a chaperon, unless the patient requested one, and then only if the chaperon was the gender the patient was comfortable with.

From the stand point of "Informed Consent," the first conversation needs to be IF the patient is going to allow the exam. After that, then HOW it will be preformed needs to be discussed. 

Thank you for reading.