When we admit our children into a hospital do we relinquish our custodial rights as parents?
As a mother of three, the first thing on my mind when arriving to the hospital in labor was the anticipation of the safe delivery of my child. Even for me, a woman well versed in the quagmire of healthcare, driven by rules and more rules, the nature of “mom” to protect is innately intuitive, no different than the brain’s mechanic response to fear — the flight or fight mechanism.
The story of April Saul, who was recently arrested for utilizing her assumed custodial rights of her child, quickly unfolds in a hospital setting. After prematurely giving birth to a baby born with a heart defect, April Saul wanted to make sure her baby got the proper care. The hospital where she gave birth, Lehigh Valley Hospital in Allentown, Pennsylvania, did not have a specialist to treat the baby’s condition, yet the Children’s Hospital of Philadelphia did. Seeing the opportunity for better care for her child, Saul requested the hospital transfer her baby.
She and the baby’s father Danny Rivera acted as healthcare advocates for their child, trying to ensure the best treatment and best options for their baby. Having determined that the baby’s best option was being treated by a specialist, Saul was determined to make that a reality. A December 10, 2012 article from the San Francisco Chronicle quotes her as saying, “Danny and I pled, in meeting after meeting with Lehigh Valley, for months… We kept saying, ‘We feel as though you lack expertise. We feel as though our child has issues you can’t address. We want her transferred. What do we have to do to get our baby transferred?’ For months we were just getting the runaround.”
The story progresses with Saul and Rivera being told that the hospital could not transfer her baby because Medicaid would not cover it. Feeling that doctors were not listening to their concerns or putting their daughter’s health first, Saul and Rivera took their daughter’s healthcare into their own hands, removing her from the hospital in order to bring her to the Children’s Hospital of Philadelphia to see the specialist on their own. The hospital alleges that the parents took the child without their permission. I have yet to see a patient consent form that states you need to have “permission” in order to remove your child from a hospital. The two parents were reported to the authorities by Lehigh Valley Hospital after removing their allegedly “medically unstable” daughter from the hospital, saying she had stopped breathing for short periods of time only a few days before the couple took her. The fact that this statement is even in the public record is of interest since they are releasing protected health information to substantiate their actions.
Yet Saul sees it differently. The article states, “Saul said she never would have placed her child in danger. She said Aralynn was breathing on her own and wasn’t hooked up to an oxygen machine or an IV pole when they left with her Oct. 23, intending to go straight to Children’s Hospital, about 60 miles south.” But Saul was stopped by the authorities before she was able to complete the trip. The article quotes her as saying “We felt like we were backed into a corner, we had no recourse and we were given no other option. We are Aralynn’s advocates. If we don’t advocate for optimum health care for her, who will? That’s a parent’s responsibility.” Apparently after this incident the child was transferred to the hospital with the appropriate resources. The big question remains: would have the child been transferred if this incident did not occur?
The position that Saul and Rivera were placed in reflects the reality of healthcare in today’s world of medicine. The hospital did not have legal custodial rights of the child and did not have a court appointed guardian to override the parents’ right to informed consent and options. The second complicating factor is the rules that govern Medicaid or any other payer plan. This story reflects the first and foremost ethical question to be answered: “When we advise patients and/or guardians of patients, are we presenting a clear ‘medical case management’ option and a clear ‘financial case management option?'” Managing a patient financially is a very different process then managing a patient medically. Yet the ethical question to be resolved and to effectively address is how we, as healthcare providers and payers, convolute the two processes into one, leaving parents like Saul and Rivera lost and confused. Bottom line, was this incident about money or access to care?
If you find yourself in a tug of war with a healthcare provider, such as the parents in this story, consider the following steps to effectively advocate for yourself or a love one who is receiving chronic or extended hospital care.
1. Request copies of your child’s medical records on a weekly basis. Read them; if you do not understand something ask for answers until you are blue in the face. Ask them to provide you an electronic copy. If the hospital is behind the times and does not have an electronic medical record system, then ask them to copy the records at their expense. Specifically ask for copies of all diagnostic tests, nursing notes, and physician notes.
2. Address a formal letter to the primary care physician and copy the Hospital Unit Manager documenting your questions. Request that your letter be included as part of your child’s medical record.
3. If you do not receive a response to your questions, ask the hospital for a patient advocate.
4. If you do not receive a patient advocate and your questions or concerns have not been addressed, request in writing to see the compliance officer for the hospital.
Did Saul and Rivera go too far or did the hospital fail to effectively respond to the concerns raised by the parents? Did the hospital clearly separate medical issues from financial issues? Getting the facts is the first step towards advocating for yourself and or a family member.
Saul and Rivera met with hospital officials to discuss their options and accuse the hospital of not actually asking for a transfer. The hospital states that Children’s Hospital of Philadelphia indicated their daughter was not medically ready for transfer. There was obviously a breakdown in communication between the two parties. A prosecutor says Children’s Hospital wasn’t ready to take the baby. The parents report that the baby did not have an IV or monitor (typically required on medically unstable children). The only clear fact is the lack of communication. Communication is key in order to make accurate and helpful health decisions for a family member or for yourself. This breakdown in communication between the parents and the hospital could have endangered the baby’s life. In the meantime, as the healthcare market continues to define itself within the new mix of rules under the Affordable Care Act, if you have a child confined in any healthcare institution, control your rights as a parent by getting the facts and documenting your concerns in writing.
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Rebecca S. Busch, RN,