Children Need Independent Patient Advocates, Too

Every child with significant illness should have an independent patient advocate in addition to their informed and involved parents.

Those who work in adult medicine are beginning to understand and embrace the concept of independent patient advocacy. They see the potential for increased patient safety and better health outcomes. They also see the relief of burden on family caregivers. Pediatric medicine is not there yet. Why? How can independent advocates move the needle forward for pediatric patients and their families?

Numerous pediatric practitioners have expressed some variation of “but the parents are here,” when they learn of what I do as an independent patient advocate. Many of these practitioners are also parents but have never been in the position of parenting a critically or chronically ill child.

It is easy to assume that because pediatric patients must be accompanied by a parent or guardian to all medical visits, those parents and guardians are also able to act as the child’s advocate. While much of parenting is indeed a form of advocacy, health advocacy is next-level parenting.

Health advocacy requires an intimate knowledge of a specialized system, which is designed to protect its bottom line. It is a system that is littered with standard operating procedures to slow you down, a system with accessibility, financial, language, cultural and emotional roadblocks.

To expect parents to effectively advocate for their child’s health while managing everything else is akin to asking a pilot to build an airplane while flying it. Parents are parents first.

Not Every Child Has Access To A Free--Standing Children's Hospital

Access to appropriate pediatric services can look different for each patient/family and in each U.S. state. Some states only have pediatric departments or “wings” in an otherwise adult hospital, and some states have one or more free-standing children’s hospitals. As an independent patient advocate (and parent of two teens living with chronic illness), I know that pediatric wings of an adult hospital are not equivalent to a free-standing children’s hospital. This nuance was also explored in a 2019 Frontiers in Pediatrics article (reference 1).

According to Children’s Hospital Association (reference 2), there are approximately 223 children’s hospitals in the United States (for their purposes, the definition of children’s hospital includes pediatric departments of an adult medicine hospital). According to the Census Bureau (reference 3), the U.S. population on May 1, 2022, was 332,637,844, of which individuals under age 21 represented 26%. That equates to 86,485,836 individuals eligible by age alone to receive care at a children’s hospital. You can do the exact math, but my calculations show not nearly enough children’s hospitals for our pediatric population.

An advocate can help a family interview, secure and maintain a relationship with the necessary specialists and community resources.

Geography alone can present significant barriers to children’s hospitals for many families. There are several states in our nation without free-standing children’s hospitals and the depth of pediatric subspecialities that come with those hospitals. Some families find themselves traveling hours within their own state to the nearest children’s hospital, and still others must travel outside their state to the hospital that has appropriate specialists. Now consider insurance restrictions, especially policies that do not allow for medical care outside of a patient’s state. Some families are bound to their home state without a free-standing children’s hospital or the depth of pediatric sub-specialists they need.

Social determinants of health (SDOH) are also a major factor in access to pediatric care. The parents need time off work, childcare for their other children, transportation to the care provider, food while away from home and the finances to accomplish it all. Multiply this by several different specialists and care providers and you have a recipe for disaster (reference 4).

Pediatric Medicine is Different Than Adult Medicine

Families with access to a children’s hospital find the pediatric health system does not work like the adult health system.

There is a new language for them to learn rather quickly, which does not consider their education or health literacy. How many families have access to a board-certified developmental pediatrician? How many families understand what a pediatric otolaryngologist does?

A children’s hospital system will also have unique costs, billing methods and insurance requirements. Facility fees are popular in children’s hospitals as many pediatric physician groups “rent out” hospital departments to provide care. Maybe a family’s insurance policy allows for their child to visit a doctor in their private practice but excludes the local children’s hospital.

Having a patient advocate involved with a child and their family helps form an educated adult patient in the future. Knowledge gained by parents can be passed on to the patient in age-appropriate ways.

The pediatric health system does come with a few perks, but you must know what to ask for, when to ask for it and who to ask. Child life specialists (CLS) are miracle workers in many cases, but most hospitals have a limited CLS department and can only offer these services in operative or inpatient situations. If your child is intubated in the pediatric intensive care unit (PICU), will someone offer music or art therapy or a hospital volunteer to sit with your child while you shower? Pediatric health system supports are in their toddler stage – as soon as a family figures out how a department works, it often changes again.

Children Enter The Medical System In Many Ways

Children enter the medical system in many ways, each with their own stressors, limitations and process requirements.

Prenatal diagnosis

Mom needs to receive evaluation and follow-up care at a children’s hospital before the birth of her child. She must navigate both the adult and pediatric medical systems simultaneously, while assuring her insurance company she is in the right place.

Diagnosis at birth/shortly after birth

If a child receives a diagnosis at birth or shortly thereafter that was not detected during pregnancy, the family may not have any time to process the diagnosis, plan for medical care/treatments or ensure the proper financial and insurance coverage. Most often, these situations are also emergencies and being triaged by pediatric emergency physicians instead of the appropriate specialist.

Diagnosis later in childhood, adolescence or young adulthood

If children or young adults receive a congenital diagnosis that was missed at birth, it can leave them untreated and unexperienced with the pediatric health system.

Emergency department visit

A child experiences an injury or traumatic event and requires emergent evaluation and intervention. See also: parent’s nightmare.

Acquired illness during childhood

A child acquires an illness during childhood and starts the process of treatment with an appropriate sub-specialist.

Transitioning To Adult Medicine is a Trip

Few families understand the importance of this transition period for their child with a chronic or critical illness. Very few institutions utilize a formal transition (reference 5) program for children entering adult medicine. Many insurance carriers cover only specific services related to transition (reference 6).

“We don’t have the staff for that.”

“We don’t have the funding for that.”

“That’s the parents’ job.”

“Why would I help you take my patient away?”

Therefore, an adolescent or young adult with a critical or chronic illness, who will need to interact with the adult health system for the rest of their life, is quite ill-prepared (references 7,8). The adolescent/young adult will not receive appropriate disease education. They will not receive appropriate counseling in areas where many pediatric specialists are afraid to dive in, namely sex, reproduction and alcohol and drug use. The parents or guardians will not receive assistance in transferring the years of knowledge about their child’s condition, treatment, medications and long-term outcomes.

Transitioning from pediatric to adult medicine continues to be a trip — down a large rabbit hole of unknowns.

How An Independent Patient Advocate Can Help

Children change quickly and so does the pediatric health system. Independent patient advocates are experts at navigating the system, its shortcomings and its benefits.

Children with chronic or critical illness rarely need just one service provider. Poor health can have serious implications on a child’s learning, social-emotional development and capacity to live in our adult society. An advocate can help a family interview, secure and maintain a relationship with the necessary specialists and community resources.

The emotional toll of parenting a sick child is a weight only those with experience can understand. Having an advocate by your side ensures that no detail is missed and all your ducks are in a row.

Having a patient advocate involved with a child and their family helps form an educated adult patient in the future. Knowledge gained by parents can be passed on to the patient in age-appropriate ways (advocacy starts young).

Lifting the burden of health advocacy allows parents to do what they do best: love and care for their child. Parenting a medically needy child is a full-time job, and families need all the support they can get.

Finding An Independent Patient Advocate

Several national organizations maintain patient advocate directories that are searchable by the public:

Greater National Advocates

Alliance of Professional Health Advocates 

Health Advocate X 

National Association of Health Advocacy 

Patient Advocate Certification Board

Advocacy Is For Everyone

Every child with significant illness should have an independent patient advocate in addition to their informed and involved parents. Together, anything is possible.

References

Frontiers in Pediatrics 2019, frontiersin.org/articles/10.3389/fped.2019.00305/

Children’s Hospital Association, https://childrenshospitals.org

United States Census Bureau, https://census.gov/popclock/

Children’s Hospital Association, Public Policy Report 2021, The New Importance of Children in American, https://childrenshospitals.org/content/public-policy/report/the-new-importance-of-children-in-america#.YoVtfi-B2DU

Got Transition, a Program of The National Alliance to Advance Adolescent Health, https://gottransition.org

Got Transition, Medical Coding Tip Sheet, https://gottransition.org/resource/?2022-coding-tip-sheet

Pediatrics 2018, Transition Planning Among US Youth, https://publications.aap.org/pediatrics/article/142/4/e20180194/37417/Transition- Planning-Among-US-Youth-With-and

Society for Adolescent Medicine, Transition from Child-Centered to Adult Healthcare Systems, https://adolescenthealth.org/SAHM_Main/media/Advocacy/Positions/Nov-93-Transition-Child-Centered-Adult-Chronic.pdf

REBEKA ACOSTA, BPCA, is a board-certified patient advocate and the Founder of A+J Patient Advocacy in Southern Nevada. She supports children, teens and young adults with chronic illness. She is passionate about patient education, care team collaboration and is driven by her experience as the parent of two teens with lifelong, chronic illness. Rebeka welcomes connections at rebeka@heart4advocacy.com.