MADERA, Calif. — In February 2021, Geetika Bajpai requested an appointment at Valley Children’s Hospital for his son Aiden.

Aiden was less than a year old.

He was born with Pitt-Hopkins syndrome, a rare, neurological disorder, which causes people to have an intellectual disability and also poor muscle coordination. Like many people with rare diseases, it took some time for his parents to learn of his exact diagnosis. Even before they did, in June 2021, his parents wanted to make sure he had the best quality of life possible. Palliative care, which is specialized medical care given alongside treatment that supports patients, seemed like a great option.

The only children’s palliative care program in the area was at Valley Children’s Hospital, near their home. Getting care there made sense, as Aiden had already received outpatient treatment at the hospital.

Except that it would be more than a year and a half before Aiden could see a palliative care doctor there. Due to children in in-patient care being prioritized for palliative care and conflicts arising on both ends that led to canceled appointments, Aiden, now 2½, had his first appointment in October 2022.

“Sometimes they have to cancel because they had a lot of other patients that needed their attention,” Bajpai said.

For children with complex medical needs, palliative care can offer physical relief and also support to families. However, systemic failures such as a shortage of places that offer palliative care services for children, and also a shortage of physicians who do this work, lead to long wait times and administrative hurdles. The issues with the system, according to experts, can be fixed.

The Pediatric Palliative Care Waiver Program, which helped children with conditions recognized by the California Children’s Services “receive supportive services at home and in the community,” ended at the beginning of 2019. Families can still get some limited coverage of pediatric palliative care through Medi-Cal or CCS, but qualifying for this requires a lengthy application process and isn’t guaranteed. The waiver provided more accessible and broader coverage.

For health care professionals giving pediatric palliative care, there is an ethical obligation to both continue giving care and pushing for change.

“The least we must do as one of the richest countries on the planet … is to look those families in the eyes and say, we promise you if bad things happen to your child, then your child will not suffer,” said. Dr. Stefan J. Friedrichsdorf, a pediatric pain and palliative medicine specialist and the medical director of the University of California, San Francisco Stad Center for Pediatric Pain, Palliative & Integrative Medicine.

Barriers to Receiving Palliative Care

When applied to children, palliative care can include a social worker engaging with a school on how to better support a student with a complex illness like cystic fibrosis. A palliative care plan answers questions such as how a patient and their family want pain to be managed, and how to reduce the child’s suffering if they become deathly ill, which can include hospice care.

“These are hard conversations to have,” said Bajpai. But, “people need to be more comfortable talking about these end-of-life decisions.”

Even for parents who want to discuss this, accessing pediatric palliative care is difficult for many families in California. In addition to the voucher program under California Children’s Services ending, there are also a lot of challenges to get private insurance to cover palliative care, with some only covering some parts of services.

And even when families can obtain coverage or have the resources to pay for palliative care out of pocket, they struggle to find trained facilities and providers. A first step could be to require insurance companies and Medi-Cal to pay doctors more to provide palliative care, because rates aren’t high enough to incentivize doctors right now. Advocates say that the state needs to provide full coverage for pediatric palliative care and that passing legislation could help guide the way. California could follow in the path of the state of Illinois, which effective at the beginning of 2023, required insurance companies to cover palliative and hospice care for children who qualified.

Another problem facing families seeking pediatric palliative care for their children is a shortage of health care providers trained in pediatric palliative medicine, said Friedrichsdorf. That includes physicians, nurses, social workers and psychologists. The situation has worsened since the start of the COVID-19 pandemic, which has led to shortages across the health care industry in general due to burnout. Lack of adequate funding and trained staff means few California hospitals offer outpatient palliative care services. A statewide survey in 2014 found that only 42 out of 361 hospitals in the state that responded offered pediatric palliative care, and those that did mostly operated part-time with few staff.

For parents and guardians, the process of applying for palliative care can be overwhelming. Even if a child has a condition recognized to qualify or their family is enrolled in Medi-Cal, they still need to qualify for palliative care. This requires parents and their kids’ health care team to fill out a separate request form, and if the request is rejected, then they must go through an appeal process. This intensive process ends up exasperating inequalities, because only families that have the time and resources to go through it can access palliative care.

Morgan Clair, an engagement manager for the California Department of Health Care Services, which oversees Medi-Cal, told California Health Report that if a child is denied a request for palliative care, parents should contact the agency’s Integrated Systems of Care Division’s Hearings and Appeals Unit. Advocacy groups like the Coalition for Compassionate Care of California, which has pushed for programs like the now-ended waiver, may also be able to offer support.

Unlike hospice, palliative care is not just for people with terminal illnesses or only a few months left to live. Palliative care can help people with complex illnesses have a “better quality (of) life,” in addition to treatment, said Dr. Debra Lotstein, the director of Children’s Hospital Los Angeles’ Division of Palliative Care.

“More children are surviving with conditions that used to be fatal in early childhood,” Lotstein said, and their parents want to give them the best lives they can.

Patients who have benefited from children’s palliative care may also face a new challenge when they turn 21: Coverage from the state of California stops. But a California bill moving through the legislature would extend palliative care services for people on Medi-Cal until they are 26.

“We believe that pediatric palliative care and hospice care can be cost-saving because if it allows people to be home and … not have to go to the emergency room for care,” Lotstein said.

For Aiden, Bajpai wanted to make sure she and her husband had a say in any potential treatment that could negatively impact their son’s quality of life. Bajpai, who is a pharmacist by training, and her husband, who also works in health care, understood that it’s helpful to have a plan about what medical procedures they would allow their son to undergo, for example.

If complications happen while Aiden is in school, doctors will use their plan while trying to get in contact with his parents.

“They were helpful in coming up with the plan, and primarily for us, we needed a document stating this,” Bajpai said about the palliative care team she worked with.

“These are hard things to do.”

This story was produced in collaboration with the California Health Report.

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