When it comes to protecting their young and vulnerable patient cohort, pediatric providers have a duty of care to obtain informed consent from patients and families. However, many doctors fail to uphold this obligation under the informed consent doctrine, jeopardizing parents’ ability to make fully informed decisions for their child’s care.
“It does not take a great leap in logic to conclude that the right to be informed about the nature of medical treatment is fundamental,” reads one 1998 study. “It is therefore worth inquiring why a right so basic in the United States legal system fades away to nothingness for most people ages seventeen and under.”
Sadly, patients and parents alike are regularly deceived when it comes to referrals for voiding cystourethrogram (VCUG), an invasive and painful procedure involving forced catheterization that is usually performed without any pain relief or sedation. Nonetheless, the VCUG test is routinely promoted as the painless, low-risk, stand-alone option for children with UTIs. Furthermore, decades of research suggest this test is widely over-performed.
How can parents prioritize their child’s well-being while protecting them from unnecessary and life-altering trauma?
Keep reading to learn more about your doctor’s legal and ethical obligations under the informed doctrine, and how to hold providers accountable for putting your child’s health first.
What Constitutes Informed Consent?
As a parent, you need to be fully informed about your child’s medical care to make fully informed decisions for their well-being. While no one is perfect, there are steps parents can follow to ensure their child receives appropriate quality care.
The AAP sets forth specific guidelines for pediatric providers to obtain legally effective informed consent from parents. These guidelines are centered on patient autonomy and include 3 primary duties:
Disclosure of information to patients and their surrogates.
Assessment of patient and surrogate understanding of the information and their capacity for medical decision-making.
Obtaining informed consent before treatments and interventions.
Can Minors Dissent to Medical Care?
The AMA Code of Ethics states that “parents’ authority as decision makers does not mean children should have no role in the decision-making process. Respect and shared decision making remain important in the context of decisions for minors...Except when immediate intervention is essential to preserve life or avert serious, irreversible harm, physicians and parents/guardians should respect a child’s refusal to assent.”
Contrary to common belief, every patient—regardless of age—has the right to participate in decision-making and “should provide assent to care whenever reasonable” (AAP 1995). According to the AAP, the goals of the informed consent process are “the same in the pediatric and adult population” and “are grounded by the same ethical principles of beneficence, justice, and respect for autonomy.”
The stated purpose for informed consent is twofold:
Protecting and promoting health-related interests; and
Incorporating the patient and/or the family in health care decision-making.
These are important pillar stones to keep in mind while discussing your child’s referral for a VCUG.
Applying Informed Consent to VCUG
For the nurses, techs, parents, and researchers who have been in the exam room during a VCUG, “patient autonomy” is probably the last thing that comes to mind. VCUG, a procedure primarily performed on preschool-aged little girls, often entails physically restraining the child’s naked body on the table so the conductor can proceed with forced catheterization.
In these moments, the child’s resistance and complaints of intolerable pain are ignored, presumably dismissed as illegitimate or exaggerated—hence the countless descriptions of “painless” VCUG online.
This begs the question:
When is the VCUG procedure truly necessary and ethical to perform on children, when their voices are routinely ignored throughout this process?
Establishing the medical necessity of any procedure has direct ties to informed consent. Many parents anxiously agree to the VCUG procedure after encouragement from their child’s provider, who are likely to describe the test as the longstanding “gold standard” for VUR diagnosis. While the “deeply held belief that informed consent is ‘at the heart’ of the doctor/patient relationship” is often reflected on paper, the patient experience tells a vastly different story.
Questions Parents Are Entitled to Ask Prior to VCUG
As a parent, you have the right to know all reasonable information before consenting to any pediatric procedure. While many parents understandably believe their child’s doctor is being truthful and transparent about VCUG, this isn’t always the case.
Discussion of all risks is paramount to informed consent. If the treating provider fails to disclose all pertinent information prior to VCUG, this is grounds for a medical malpractice lawsuit.
What information are parents entitled to know under the informed consent doctrine?
Before consenting to your child’s VCUG, consider bringing up the following with your provider to ensure you have all of the information you’re entitled to:
1. What are the long-term risks of VCUG?
If the answer to this question is absent or limited, consider following up with:
What are the psychological risks of VCUG?
Do you provide any resources following the procedure (e.g., psychiatric consultations and/or counseling appointments)?
How does this relate to informed consent?
Your physician is obligated to disclose all known risks of the proposed treatment. This includes the risk of psychological trauma, which many studies describe as the “equivalent” of child sexual abuse (CSA).
2. Approximately how many times does VUR resolve in your patients (with or without antibiotics) without VCUG being performed?
Many researchers suspect the VCUG test is widely over-performed. While it can be scary to consider the risks of dissenting to treatment, such as renal scarring, keep in mind that there are varying grades of VUR—and in mild cases, spontaneous resolution is a definite possibility.
Consider this 2016 study: “[M]any children underwent invasive surgical procedures to correct VUR. We now know that many cases of VUR are low-grade and have a high rate of spontaneous resolution.” In other words, VCUG is typically unnecessary for children with low-grade VUR, as the condition usually resolves on its own.
This isn’t to say that parents should settle for no treatment at all, especially if there are concerns from either party. However, we encourage parents to inquire about viable and less invasive alternatives before consenting to any unnecessary procedure, especially given the wealth of critically appraised research establishing VCUG trauma as the “equivalent” of “violent rape” (May 2014).
Some potential follow-up questions include:
Based on my child’s symptoms, do you suspect low-grade VUR or high-grade VUR?
What are the risks of forgoing treatment at this time?
What are some less invasive alternatives to try prior to VCUG?
How does this relate to informed consent?
According to AAP guidelines, your physician is obligated to disclose the nature of your child’s illness or condition. Even if they can’t estimate the exact grade of VUR, your physician can likely estimate the severity of your child’s condition based on their symptomology, age, and other factors. If your physician seems unwilling to educate or offer their professional opinion, there’s no harm in conducting your own research, seeking a second opinion from another doctor, or consulting with parents who were once in your shoes.
3. What are some safe, available alternatives to VCUG?
If your physician recommends a VCUG for your child without suggesting potential alternatives, including no treatment at all, this is definitely a sign to ask more questions. Consider inquiring about alternative methods of treatment (there are already several safe, available, and reliable alternatives to VCUG).
If your physician seems open to discussing the potential pros and cons of alternative treatments, great! If not, this may be a red flag that it’s time to seek a second opinion. Some follow-up questions include:
Based on my child’s VUR grade, what are the pros and cons of [alternative procedure]?
What are the pros and cons of forgoing treatment at this time?
What is the chance that my child’s VUR will resolve spontaneously with/without antibiotics?
How does this relate to informed consent?
Your physician is obligated to disclose all reasonable alternative treatments to a proposed procedure or treatment. Safe VCUG alternatives include (but aren’t limited to): renal ultrasound, antibiotics, corrective valve surgery (in high-grade VUR cases), PIC cystogram, CT urogram, DMSA renogram, IVP, and ceVUS. The latter has been established as the safer, radiation-free alternative to VCUG. Not only does ceVUS cost families less on average, but it’s less traumatic and has an equal or superior diagnostic value.
If your child’s provider doesn’t offer any of these alternatives, consider asking why not. While many VCUG alternatives are less financially burdensome on families, this means they’re typically less profitable for hospitals, which may influence your provider’s answer.
Can Informed Consent Violations Constitute Medical Malpractice?
Yes, they certainly can. While exact regulations vary from state to state, informed consent violations by healthcare providers constitute medical malpractice under the law. Your child’s doctor is obligated to disclose all pertinent information about a proposed treatment prior to administering care.
7 Red Flags of Informed Consent Violations
Regardless of the intention behind it, it’s crucial to recognize when physicians may jeopardize your right to give informed consent for your child’s VCUG. Common red flags include:
Your provider is unwilling to provide additional information or fully answer your questions about risks, potential treatment, and other pertinent information.
Your provider seems impatient or rushed in answering your questions about VCUG, including follow-up care and future treatment options.
Your provider implies that your child will die without a VCUG, but refrains from offering additional information or potential alternatives for treatment.
Your provider orders a VCUG test before informing you of potential risks and benefits.
Your provider expresses uncertainty about your child's VUR grade, but orders a VCUG test anyway.
Your provider orders a VCUG test without first conducting a renal ultrasound.
Your provider openly denies decades of critically appraised research comparing VCUG trauma to child sexual abuse, including former patients being used as proxies in numerous CSA studies.
Advocating for VCUG Reform in Pediatric Urology
The Unsilenced Movement was founded by former VCUG patients, now adult women, whose lives were drastically and irreparably impacted by VCUG in early childhood. After decades of silence, our research team is committed to raising awareness about VCUG trauma by highlighting the real effects of VCUG through diligent education and patient empowerment.
Our survivors stand in solidarity after struggling with a myriad of adverse health effects due to VCUG, including PTSD, vaginismus, self-harm, suicide attempts, susceptibility to sexual assault and abuse, autoimmune conditions, and long-term avoidance of medical care. We believe that every patient has the right to bodily autonomy regardless of age, which is why we’re committed to helping VUR families exercise their rights to protect their child’s well-being and future.
It is hardly surprising that many children experience this in a similar way to violent rape. With the added damaging dimension that it was a primary attachment figure that allowed it to happen.
The medical community has known for decades the sexually traumatic nature of this test.
Well done every parent visiting this site making it your business to safeguard your child from a profession that does not hold itself accountable for safeguarding children from sexual harm - a profession that knowingly subjects children to the risk of sexual harm inflicted at their own hands.