Last week the High Court heard the tragic case of Tafida Raqeeb, now aged five, who suffered a devastating intracranial bleed on February 9 of this year. She sustained widespread brain damage but is not brain-stem dead and is now on long-term ventilatory support.
The doctors at Royal London Hospital wish to discontinue ventilation in her “best interests”. Her parents (pictured outside the Court) wish her to be sent to the Gaslini Children’s Hospital in Genoa where the Italian specialists do not consider it in her “best interests” to discontinue her ventilation unless she is brain-stem dead. It is proposed that a tracheostomy and gastrostomy feeding tube should be inserted to help facilitate long-term care at home with her family.
As the Herald went to press, the issues before the High Court were whether she could be discharged and transferred to the Gaslini hospital or whether it would be in her “best interests” that her ventilation be discontinued so that her life could be brought to an end. It is accepted that if ventilation treatment is continued, Tafida could survive for 10 to 20 years.
The family are devout Muslims and a fatwa (legal pronouncement) has been issued stating that it would be a grave sin for the parents to consent to discontinuing ventilation which would lead to Tafida’s death. Many of the details are now in the public domain, including very moving videos of Tafida before as well as during her admission to hospital.
Tafida currently has a need for ventilation. However, prolonged ventilatory support in a domestic setting is available in Britain and is recognised as an additional (though clearly complex) healthcare need by the National Framework for Continuing Care for Children (2016). Details of domiciliary ventilatory support are widely available on the internet; for example, the service provided by the nearby Royal Brompton Hospital in London. The Clinical Commissioning Group is responsible for ensuring that the quality of any healthcare package is tailored to a child’s needs, in conjunction with the family who become the immediate carers. Care in a domestic setting would save money and free up critical care beds in hospital.
Although it is well recognised that being at home is better for a child’s development, stable long-term ventilated children remain in hospital many months longer than necessary. Dr Gillian Halley, consultant paediatrician at the Royal Brompton Hospital, commented in an article in 2012 that “an inefficient National Health Service, with poor inter-agency communication and lack of joined-up working between health and social services, has consistently failed patients and their families.” In 2015 Dr Halley rightly won a national award for NHS leadership for her work on home ventilation. The judging panel were impressed with her vision of transforming services for families via support for children requiring long-term ventilation at home. In sharp contrast, Tafida’s mother had to plead her case with tears in her eyes in a moving personal testimony before the Court.
The cessation of life-sustaining treatment such as ventilation, hydration or nutrition is now regarded in law as an omission to act and therefore not unlawful. Nevertheless, from an ethical standpoint, where the omission occurs with the intention of causing the death of the person, this is profoundly morally wrong. As the Catechism of the Catholic Church (2277.2) states, “An act or omission which, of itself or by intention causes death in order to eliminate suffering constitutes murder.” (The Catechism says it is only legitimate to discontinue medical procedures when they are “burdensome, dangerous, extraordinary, or disproportionate to the expected outcome”.)
The family’s message is readily available on social media as a permanent record of events and will resonate throughout the country, Europe and the world. The battle for Tafida’s life and for the rights of the parents of sick children everywhere is being fought with the weapons of love, empathy and integrity in defence of human life and dignity and for the rights of the family.
The record of the profound dedication and care of the family for their daughter will remain as a permanent example and inspiration for us all. It will continue to encourage and inspire other families in the care of their sick children.
May the silent yet eloquent message of Tafida herself remind us all of our duties, within the medical and nursing professions and in wider society, to protect the inalienable and universal right to life of all members of the human family irrespective of age, race, gender, disability or religion.
We are all made in the image of God who shared in our humanity through the Incarnation. Whatever we do for those most in need, especially the sick and vulnerable, we do unto Christ. The treatment of Tafida and her family will be recorded. I hope that the response of our society, the medical profession and our legal system will resonate throughout the civilised world as a testimony to our respect for human life and dignity.
Dr Philip Howard is a past president of the Catholic Medical Association (UK) and member of the council of the British Medical Association. This article does not necessarily reflect the views of the CMA or BMA.
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