A Dutch review committee has found that a doctor acted with due care in ending the life of a child aged almost two whose suffering was judged unbearable and without prospect of improvement. The case is the first reported under the framework for children aged one to twelve.

The boy had severe brain damage, severe epilepsy and profound developmental impairment. Independent doctors initially disagreed that he was suffering unbearably at all times, citing possible treatment options, before another doctor reached a different conclusion.

Severe Brain Damage and Epilepsy

The child was born at twenty-six weeks and three days. Infections, including sepsis, followed in neonatal intensive care before he was transferred to the Netherlands at four and a half months.

An MRI showed extensive brain damage, including periventricular leukomalacia. Damage to the occipital cortex also pointed to cerebral visual impairment.

At eight months, he was diagnosed with infantile epileptic spasm syndrome, formerly known as West syndrome. The epilepsy caused repeated distress and developmental delay.

Several anti-epileptic medicines caused serious side effects, including restless behaviour. Seizures continued, while a severe sleep disorder meant he sometimes barely slept for many nights.

In the final months, seizures increased sharply during eating. He also struggled to clear mucus from his lungs, raising the risk of respiratory infections, while unsafe swallowing increased the risk of aspiration pneumonia.

When he was almost two, his developmental age was estimated at about six weeks and he had no verbal development. Doctors expected lifelong dependence on care, with a high probability of early death from complications.

Doctors Disagree on Suffering

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The doctor said the child's suffering arose from his overall condition and would persist even if seizures were controlled. Because he could not communicate, the assessment relied on observations by the doctor, his parents and specialists.

Independent physicians agreed there was no realistic chance of improvement and that his condition was irreversible. They also found he was not continuously suffering unbearably and identified treatments that might improve seizure control.

The doctor followed the advice, but side effects increased distress and treatment was stopped. A second independent physician found ongoing discomfort and frequent seizures, with no reasonable way to relieve the suffering other than ending his life.

The review committee said the doctor could reasonably conclude that the child's suffering was unbearable and without prospect of improvement. It also noted the accumulation of severe conditions and expected deterioration.

Long-term sedation was discussed with the parents. It would have led to death through lack of fluids and nutrition, but the parents did not want it and the doctor did not consider palliative sedation a reasonable solution.

The child was sedated with midazolam and morphine before receiving propofol and thiopental. He died in deep sedation, and the committee found the doctor had exercised due medical care although no specific protocol could be found.

Church Leaders Respond

Cardinal Wim Eijk, president of the Dutch bishops' conference and its bishop for medical ethics, questioned whether ending a person's life can be considered merciful when it violates human dignity. He said adequate palliative care is the merciful response.

Eijk said palliative sedation may be appropriate when standard care falls short, with death occurring as a side effect rather than the intended outcome. His comments followed publication of the Dutch committee's finding.

Pope Leo XIV, speaking to sick pilgrims and carers at Lourdes on 27 September, urged people to reject causing death under the guise of false compassion. He said, 'What is legal is not necessarily moral.'

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