Tue | Dec 11, 2018

Letter of the Day | Parents have full right to kids' medical data

Published:Friday | September 21, 2018 | 12:00 AM

THE EDITOR, Sir:

On September 17, 2018, the legal team of Jamaicans for Justice (JFJ) obtained five binding orders from the Supreme Court against the University Hospital of the West Indies (UHWI) for illegally denying parents of an infant child access to her medical records necessary for them to give informed consent to a risky medical procedure, for unlawfully preventing the child's father from seeing or attending to her because he objected to UHWI's actions, and legally restraining UHWI staff from threatening the family with legal action because they sought an independent medical opinion.

These orders attempt to quell a dispute between UHWI and Jason and Charlotte Young, the parents of a 14-month-old infant who is a patient at the UHWI. JFJ made emergency applications before the court to protect them for further unlawful acts and to safeguard the welfare of their infant child. The complete medical records were requested to enable the parents to make an informed decision regarding their child's life.

On August 24, Mrs Young was advised by a doctor that the child would certainly die within two days because the hospital could do nothing to save her life. At that point, medical treatment from UHWI ceased, according to the family. The doctor's judgement proved to be incorrect. The infant lived beyond August 26, despite not being treated by the medical staff.

 

Requests dismissed

 

After this, the Youngs were informed that their daughter had acute mild leukaemia and would certainly die within 48 hours if the family did not immediately consent to chemotherapy treatment on the infant (which also proved to be incorrect). When the family asked for more details, doctors dismissed their requests and reiterated that their consent was mandatory.

Shortly after, another UHWI doctor told the family that the child did not actually have cancer - further confusing the family. Importantly, throughout this process, UHWI doctors withheld from the family the fact that they had information indicating that the treatment could kill the child because of the extreme risks of chemotherapy on infants and that UHWI had already determined that the treatment only had a 40 per cent chance of success if it did not kill the child.

The Youngs' attempt to get a second medical opinion from one of Jamaica's leading cancer specialists immediately drew resistance. UHWI illegally refused the Youngs' requests for full disclosure of their daughter's medical records and docket, which were crucial for the independent medical opinion. UHWI declared that the family had no right to that information and, instead, shared select information that proved to be useless for an independent medical judgement on the best treatment plan.

On Tuesday, JFJ asked the court to order the release of the child's medical information. The court accepted JFJ's application and ordered UHWI to release the child's complete medical docket. It also ordered "that an independent medical opinion be done ... within 24 hours of the date of this order to assist this court in determining whether the proposed chemotherapy treatment is in the best interest of the child".

MONIQUE LONG

Policy and Advocacy Manager