Indi Gregory has passed away in the hospice where she was taken off life support on Saturday, November 12.
The eight-month-old British baby died after the legal battle that her parents had undertaken months before to keep her on life support and transfer her to a children’s hospital in Rome. She suffered from an incurable mitochondrial disease, which is why the Supreme Court of the United Kingdom ordered to interrupt her treatment and withdraw her from life support, despite the opposition of her parents.
Indi, who has been receiving treatment at Queen’s Medical Center in Nottingham, England, suffered from the same disease as Charlie Gard, the baby who died in 2017 after a similar fight by his parents to try to save his life.
On November 6, the Italian government granted the girl Italian citizenship so she could travel to Rome where she would receive treatment at the Bambino Gesù hospital. This last attempt to ensure that Indi continued receiving medical care occurred 45 minutes before the legal decision calling for removing her life support system became effective.
Despite the parents’ wishes to move to Italy, on November 8 the English Supreme Court ruled that the girl should be taken off life support in hospital or a hospice. Her parents’ request to take her home was denied. In their fight in the British Supreme Court they have received legal support from Christian Legal Centre.
The judge ruled that it would be impossible to remove her from life support at home since, according to the doctors, Indi was “clearly distressed, agitated and in pain” and her after-care would need to be “managed by trained professionals with resources on hand to deal with complications, and minimise distress.”
Dr Keith Girling, medical director at Nottingham Hospitals, said: “This is an incredibly challenging time for Indi and her family, and our thoughts are with them today. Following today’s High Court decision, our priority will remain to provide Indi specialised care appropriate to her condition and in line with the direction of the court, supporting her family in every way possible.”
The approach to the treatment of incurable patients often presents ethical dilemmas that are difficult to resolve. As in the aforementioned Charlie Gard case, a court again rejected the request of the parents of a critically ill patient and ordered the withdrawal of life support, a decision that has precipitated her death.
The decision to withdraw life support may be ethically justified in certain cases in which its maintenance may prolong the patient’s agony and suffering without expectations of improvement. Maintaining this support in this case would mean a form of therapeutic obstinacy that, far from benefiting the patient, would mean a malicious act that must be avoided.
But in other circumstances, and specifically when there is some hope for treatment, even if the chances of success are small, the decision to withdraw this support does not seem so justified.
In these cases, utilitarian positions should be avoided in which two factors seem to prevail: on the one hand, the possibility of devaluing the life of the incurable and totally dependent patient who would lose dignity and deserve less care; on the other hand, the economic criteria that consider it unjustified to dedicate large resources to patients with low life expectancy.
The inalienable value of every human life would require having valued the proposal offered by the Italian hospital in accordance with the will expressed by her parents, even if this entailed considerable financial and resource expenditure, because Indi’s dignity justified it.
The positions of both the Bambino Gesù hospital and the Italian government deserve our recognition, as they seem to have valued Indi’s life and the will of her parents better than the British judge who ordered her disconnection and prevented the transfer. They are also grateful for the help they have received from the Christian Legal Center in their legal battle to try to keep her daughter alive.
The positions of both the Bambino Gesù hospital and the Italian government deserve our recognition, as they seem to have valued Indi’s life and the will of her parents better than the British judge who ordered her disconnection and prevented the transfer. It is worth highlighting the help they have received from Christian Legal Center in their legal battle to try to keep their daughter alive.
Julio Tudela and Ester Bosch
Bioethics Observatory – Institute of Life Sciences
Catholic Universtity of Valencia