How new 'informed consent' law is complicating vaccines for children in Tennessee

When Sheri LeVan took her 4-year-old grandson to his annual well-child visit in June, it seemed like an appropriate time to get the standard vaccines Tennessee requires for pre-Kindergarten enrollment.

But the doctor's office refused to administer the range of vaccines, which protect from debilitating diseases such as polio and measles, citing a new state law that medical professionals and child advocates in Tennessee now say is complicating once-routine medical care for potentially thousands of children who are not under the care of their biological parents.

The law, sponsored by Republican lawmakers who resisted vaccination requirements during the COVID-19 pandemic, requires doctors to obtain "informed consent" from the parent or legal guardian of a minor before administering a vaccine.

Though it was lauded by some as a parental rights law, physician advocates say confusion surrounding the law, and how to apply it, can leave responsible guardians like LeVan unable to consent to routine medical care for the children under their charge.

Meanwhile, the Department of Children's Services is effectively hamstrung by the law, which requires biological parental rights to be irrevocably terminated before DCS can seek a vaccine for a child in its care. Though more than 8,900 children are under the state's custody, DCS only has full legal guardianship to legally consent for about 10% of those children.

For the remaining 90% of children, DCS is now required to seek a court order for each individual vaccine needed or seek permission from the biological parents.

"We intend to comply with the law while doing all we can to ensure children receive the appropriate medical and educational services needed," DCS spokesperson Alex Denis said.

Another 65,000 Tennessee children are in "kinship" homes, per Kids Count data from 2020 to 2022, where they're cared for by a relative or other close adult. Advocates say these homes, while acting as fulltime caregivers, may not have the financial or legal resources to sever parental rights and obtain legal guardianship, which physicians say needs further definition in the vaccine law.

"Unfortunately, tragically, for many of these children it may be difficult to locate the parents or difficult to get written consent," said Dr. Jason Yaun with the Tennessee Chapter of the American Academy of Pediatrics. "We’re very worried about the barriers around children who are already medically complex, medically vulnerable, and providing for them and getting them up to date (on vaccinations)."

Tia Bailiff, an attorney and guardian ad litem for abused and neglected children, recently filed a court petition for a Tennessee child to get a necessary vaccine. Bailiff expressed frustration that lawmakers would craft policy that further stymies timely care for this group of children, who require independent advocates because courts have decided their parents aren't currently reliable or safe.

"When we're dealing with the juvenile dependency and neglect realm, these children are not from parents who are responsible or able to contacted or even be counted upon to do the right thing for their children, or we wouldn't be involved," Bailiff said.

After months in court, custody documents weren't enough to satisfy doctor's office

Last fall, LeVan and her husband Doug took in their grandson after years of issues with his father, the LeVans' son, and mother. Both struggled with substance abuse issues before the mother disappeared, LeVan said, and their son was incarcerated.

"They had 3 years to do their job, and they didn’t," LeVan said.

The LeVans, who live in Johnson City, spent eight months in court securing a form of permanent custody. LeVan said they were advised it was a secure guardianship — if his parents come back into the picture and wanted to regain custody, they have to prove neglect and abuse on the grandparents' part.

The LeVans could seek a full termination of parental rights, but attorney fees would likely rise to the tens of thousands of dollars, LeVan said. The couple, both older and on fixed incomes, didn't feel it was practical to spend more time and money in court as they lined up medical therapies for their grandson and settled him into their home.

At the June doctor's visit, LeVan was asked to reschedule an appointment for the vaccines and bring her custody paperwork. But LeVan and her grandson were again turned away from the second appointment because she couldn't prove his biological parents terminated their parental rights, per the office's interpretation of the new law.

Other pediatricians in town also turned her away, LeVan said. She began calling her lawmakers, state medical boards, even the governor's office. She received differing explanations and advice from nearly everyone.

"It seems like the left-hand doesn’t know what the right one is doing," LeVan said. "We saved the state a ton of money by taking in this child, not that I would have ever allowed him to go into the system, but then the state ties our hands behind our back."

'Pervasive problem'

The 2023 law stems from a 2021 political controversy borne out of the COVID-19 pandemic.

At the time, Republican lawmakers accused then-Health Commissioner Dr. Lisa Piercey of pressuring teenagers to get the COVID-19 vaccine with or without parental consent, which Piercey flatly denied. Tennessee then significantly dialed back routine vaccine outreach, with internal department emails indicating staff should conduct "no proactive outreach regarding routine vaccines."

In 2021, Sen. Janice Bowling, R-Tullahoma, and Rep. John Ragan, R-Oak Ridge, backed a bill to chip away at the "mature minor doctrine," a rule of law recognized by Tennessee courts that teenagers 14 and older are capable of consenting to, or denying, routine medical treatments. Other states have similar doctrines with varying minimum ages.

Bowling and Ragan were among the most outspoken lawmakers to criticize the policy to allow teenagers to seek out a COVID-19 vaccine by themselves, and the 2021 law blocked any minor from receiving a COVID-19 vaccine without parental consent.

Bowling had previously hosted anti-vaccine providers in the General Assembly, including an Idaho pathologist who has falsely claimed the COVID-19 vaccine causes cancer. Meanwhile, Ragan threatened to dissolve Tennessee's medical license board if it didn't delete a policy opposing COVID-19 misinformation from its website.

The mature minor doctrine arose again earlier this year, when the duo sponsored another bill expanding on their 2021 effort, drawing it to include any vaccinations, even those required by Tennessee for school enrollment.

Yarnell Beatty, general counsel for the Tennessee Medical Association, says the law has become a "pervasive" problem for physicians in just a few short months.

The law is complicating care on two fronts, Beatty said, as it doesn't define how doctors should obtain and document "informed consent" to satisfy the law, and it ignores the realties of childcare in 2023, where working parents often deputize a grandparent or caregiver to take children to routine doctor appointments.

Beatty said legal mechanisms like powers of attorney allow parents to tap someone else to make medical decisions for their child, in addition to more unofficial trends of deputizing childcare, but the new law doesn't appear to allow for those options.

"Medical offices have to become lawyers to figure out whether or not they’ve given enough information that provides legal informed consent, and then have to delve down into whether who brings the child in meets the definition of a legal guardian," Beatty said.

"It doesn’t make sense that a parent can’t utilize a lawful power of attorney to allow someone else to consent to a vaccine."

The Tennessee Medical Association last week filed a formal rule-making petition with the Tennessee Department of Health, which asks the department to issue explicit guidance on how doctors can document informed consent and identify qualified consenting guardians. But that process can often take over a year, and Beatty said TMA plans to take a "two-pronged approach" and support changes to the law in next year's General Assembly session.

"I think lawmakers are coming to understand that parents are very frustrated by this law, physicians are very frustrated by this law, front desk workers in medical practices are very frustrated with this law. We hope that either the General Assembly or Department of Health can clarify this law or give guidance so there are no traps for physicians," Beatty said. "Patients shouldn’t be turned away when they come in to get a vaccine. They shouldn’t have to make mom or dad take time off work to come get a vaccine, which under previous law children were able to do if their grandparents or stepparents brought them in."

Ragan, meanwhile, doesn't appear likely to support any amendments to the law.

“Absent some extraordinary circumstance such as abuse or neglect, children belong to their families and not the state," Ragan said. "As such, parents and legal guardians should be the ones who make the important health care decisions for their child. The Mature Minor Doctrine Clarification Act will ensure that occurs in Tennessee. Parental rights and responsibilities should never be allowed to be circumvented due to issues of convenience, expense or bureaucratic expediency.”

LeVan said regardless of the intent, it was a "poorly thought-out bill" if caregivers given authority to make a host of other decisions for children because of abuse and neglect cannot make vaccine medical decisions.

"My husband is 62, and I’m 59. We’re trying to do this at an older age," LeVan said. "I just think they’re causing a huge issue for grandparents and people who might not necessarily know how to navigate the system. It’s a shame."

Reach Melissa Brown at mabrown@tennessean.com.

This article originally appeared on Nashville Tennessean: Tennessee law creating 'pervasive' problem for childhood vaccines