Parents of terminally ill Galician child fight to take her off life support

Andrea, a 12-year-old girl with a degenerative, irreversible disease, will likely remain at Hospital Clínico in Santiago de Compostela despite her parents’ plea to take her off life support.

The pediatrics department at the Galician hospital is rejecting a non-binding report by the regional government’s bioethics committee recommending that Andrea be disconnected from the machines and offered palliative care. The report is dated September 14.

While the 12-year-old’s parents insist that their child is suffering, Clínico doctors say she feels no pain.

Patients’ rights should not be left at the mercy of the personal interpretation of professionals”

Right to a Dignified Death Association

Andrea’s parents have now turned to the courts. A Santiago judge on Friday requested four expert reports, including one from the chief forensic doctor at the Galicia Legal Medicine Institute (Imelga), to know whether Andrea's life support was “unnecessarily prolonging the child’s agony.”

The judge has also requested a report from the head of the pediatrics department at the hospital, with an explanation of why he believes that Andrea “feels no disproportionate suffering.” This department has rejected the parents’ plea for a dignified death for their child. 

Meanwhile, Galician health chief Rocío Mosquera supports the doctors’ stand and has called the parents’ petition “active euthanasia.”

In June, a thrombocytopenia – a decrease in platelet levels in the blood – worsened Andrea’s condition, causing considerable undernourishment and a rejection of artificial feeding.

Since then, her parents have been demanding a dignified death for their child.

“We don’t want to see her in agony, emaciated, in great pain and unable to even recognize us,” say the parents, who are convinced there are no good reasons to keep her connected to a machine, “receiving minimal nourishment, with a deteriorated stomach and great pain every time they try to increase the feeding dose.”

Andrea’s parents cannot understand why physicians claim that the end has not arrived. They say that “the child is exhausted, without the strength to even gesticulate.” Her mother says that Andrea has stopped smiling at her.

In a short release, the Galician hospital said it was respecting existing legislation and the principles of ethics, and rejected the parents’ claims that physicians were engaging in “futile medical care.”

Andrea’s case has sparked reactions from Spain’s politicians and civil society.

Socialist Party head Pedro Sánchez, who is pledging to regulate euthanasia if he wins the general election in December, is joined by the Right to a Dignified Death Association, which believes the time has come for a public debate on decriminalizing euthanasia and assisted suicide.

This group feels that the 12-year-old child is being subjected to “added suffering on top of a situation that is already dramatic.”

The association notes that Spanish legislation passed in 2002 establishes that “the patient has the right to freely choose among available clinical options and to refuse treatment.” In the case of minors, legal tutors must provide this consent. In Galicia, the group adds, these rights “have been reinforced by a regional law on dignified death that was recently passed.”

As for Andrea’s case, the Right to a Dignified Death Association has said that it is a conflict between a family wishing to exercise its rights and a medical team that is “ignoring the law and imposing their personal beliefs on the values and desires of the patient, which is a regular occurrence.”

“Patients’ rights should not be left at the mercy of the personal interpretation of professionals,” said an association spokesperson, who hoped that “new majorities at the next Spanish parliament will address the decriminalization of euthanasia and assisted suicide.”

The regional governments of Andalusia, the Canary Islands, Aragon, Navarre, the Balearic Islands and Galicia all have their own dignified death laws, and the Basque Country is now drafting one of its own.

English version by Susana Urra.