Geetika Bajpai requested an appointment at Valley Children’s Hospital for her son Aiden in February 2021. Aiden was just a year old. He was born with Pitt-Hopkins syndrome.
Pitt-Hopkins Syndrome is a rare genetic condition that affects the TCF4 gene on chromosome 18. PTHS is characterized by developmental delay, possible respiratory problems such as episodic hyperventilation or breath-holding while awake, recurrent seizures/epilepsy, gastrointestinal issues, a lack of speech, and unique facial features.
It took some time for his parents to learn of his exact diagnosis, as it does for many people with rare conditions. Even before they did, in June 2021, his parents wanted to ensure he had the best quality of life possible. Palliative care appeared to be an excellent choice.
Palliative care is a form of specialized medical care for those dealing with an illness that is life-limiting. This style of care focuses on relieving symptoms and stress caused by the condition. The goal is to improve the patient’s and family’s quality of life.
Palliative care is provided by a specially trained team of doctors, nurses, and other professionals who collaborate with the patient’s regular clinicians to provide an extra layer of support. Palliative care is centered on the patient’s needs, not on the patient’s prognosis. It is appropriate at any age and stage of a severe illness, and it can be provided in conjunction with curative treatment.
The only children’s palliative care program in the area was at Valley Children’s Hospital, close to their home. Aiden had already undergone outpatient treatment at the hospital, so getting care, there seemed reasonable.
Except Aiden would have to wait more than a year and a half to see a palliative care doctor there. Aiden, now two and a half, had his first appointment in October 2022 due to children in in-patient care being prioritized for palliative care and conflicts emerging on both ends that resulted in canceled appointments.
Palliative care can provide physical relief and support to families of children with severe medical needs. However, systemic flaws, such as a scarcity of institutions that offer palliative care services for children, as well as a shortage of physicians who do this job, result in long wait periods and administrative challenges. According to experts, the system’s problems can be resolved.
The Pediatric Palliative Care Waiver Program, which helped children with conditions recognized by California Children’s Services “receive supportive services at home and in the community,” ended at the start of 2019. Families can still acquire limited coverage for pediatric palliative care through Medi-Cal or CCS, but this requires a lengthy application procedure and is not guaranteed. The waiver offered more.
There is an ethical obligation for healthcare providers who provide pediatric palliative care to continue providing treatment while advocating 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 is a pediatric pain and palliative medicine expert and the medical director of the Stad Center for Pediatric Pain, Palliative, and Integrative Medicine at the University of California, San Francisco.
Palliative care for children might include a social worker working with a school to help better a student with a complex condition such as cystic fibrosis. A palliative care plan addresses issues such as how a patient and their family want the pain to be managed, as well as how to lessen the child’s suffering if they become terminally ill, which may involve hospice care.
Even for parents who want to discuss it, accessing pediatric palliative care in California is challenging for many families. In addition to the voucher program under California Children’s Services ending, there are other obstacles to getting private insurance to pay for palliative care, with some only covering some types of services.
Even when families have coverage or the means to pay for palliative care out of pocket, they have difficulty finding qualified facilities and clinicians. A first step could be to require insurance companies and Medi-Cal to pay doctors more to provide palliative care because rates are now insufficient to incentivize doctors. Advocates say the state must provide comprehensive coverage for pediatric palliative care and that legislation might assist in paving the way. California could follow in the footsteps of Illinois, which, beginning in 2023, mandated insurance companies to cover palliative and hospice treatment for children who met specific criteria.
Another issue that families seeking pediatric palliative care for their children face is a shortage of healthcare providers trained in pediatric palliative medicine, according to Friedrichsdorf. This includes doctors, nurses, counselors, and psychologists. Since the start of the COVID-19 pandemic, the situation has deteriorated, resulting in shortages across the healthcare industry in general due to exhaustion. Few California hospitals provide outpatient palliative care due to insufficient funds and skilled staff. A statewide survey conducted in 2014 discovered that just 42 of the 361 hospitals in the state that responded provided pediatric palliative care, and those that did primarily worked part-time and had little staff.
The application process for palliative care can be daunting for parents and guardians. Even if a child has a recognized medical condition or their family is on Medi-Cal, they must still qualify for palliative care. This requires that parents and their children’s healthcare team fill out a separate request form, and if the request is denied, they must go through an appeal process. Because only families with the time and finances to go through it may obtain palliative care, this laborious process exacerbates inequities. Patients who have benefited from pediatric palliative care may confront a new obstacle when they turn 21: Coverage from the state of California ends. However, a bill going through the state legislature would extend pediatric palliative care services until the age of 26.
Life with a disability or severe illness can be challenging, especially for children. Palliative care services can improve a patient’s quality of life. Money should never be a barrier to receiving care. For too many people and their families, however, medical care is out of reach.
“About Pitt Hopkins.” Pitt Hopkins Research Foundation, 17 Mar. 2023, pitthopkins.org/about-pitt-hopkins/.
“About Palliative Care .” The Center to Advance Palliative Care , http://www.capc.org/about/palliative-care/.
Himelstein, Bruce P., et al. ‘Pediatric Palliative Care’. New England Journal of Medicine, vol. 350, no. 17, Mass Medical Soc, 2004, pp. 1752–1762.
Métraux, Julia. “For Medically Fragile Kids, Access to Palliative Care Depends on Family Resources.” California Health Report, 7 June 2023, http://www.calhealthreport.org/2023/06/07/for-medically-fragile-kids-access-to-palliative-care-depends-on-family-resources/.