End of Life Care for Children in Groningen
Filmmaker Jean Luc-Godard’s obituary focused on his astounding creativity. It also noted that his death followed assisted suicide. His legal advisor called it a “voluntary departure.” In Switzerland, where he lived, assisted suicide is legalif chosen by a person judged to have decision-making capacity.”
Assisted suicide is now legal in 10 countries. Many more considering legalization. It is legal in 10 states in the US. The number of people who die this way is rising.
I read about Godard’s death while visiting the charming Dutch college town of Groningen. Groningen is buzzing with bookstores, bistros, and bicycles. It is famous in bioethics circles as the town where doctors developed a protocol for neonatal euthanasia.
With euthanasia and assisted suicide on my mind, I was curious to discuss a case with doctors from the pediatric intensive care unit (PICU) at the University Hospital to talk about a case that had caused moral distress. The case was of a familiar type. There were cultural, religious, and language differences between the doctors and the family. After being admitted to the pediatric intensive care unit for treatment of seizures, the child couldn’t get off the ventilator. Genome sequencing found a variant associated with Leigh’s disease. It was surprising that the child had lived as long as he had, especially given the chaotic challenges of refugee life. The doctors thought it best to withdraw life-support and provide palliative care. The family disagreed. Second and third opinions were sought. No other PICU in the Netherlands would accept the child in transfer.
Given that we were in Groningen, I wondered if somebody would bring up the possibility of euthanasia. Nobody did. They calmly informed me that it would only be considered if the parents requested it and the child had intractable suffering. Neither criteria were met in this case. Instead, the discussions played out as the would in any PICU in the US.
I asked my Dutch friends if they’d ever go to court. They didn’t like the idea. These cases should be settled by doctors and families, talking together. It used to be easier, they thought, when there was less religious and cultural diversity. Such clashes often represent fundamentally different world views.
One doctor noted, somewhat ruefully, that the PICU is becoming more and more like a medical home for technology-dependent children with complex chronic conditions. It is intensive care but it is also long term care.
We are entering a new phase in end-of-life care. Advances in life-supporting technology enable us to keep children alive even when they are very sick and have no hope of recovery. Some parents want that. Others want palliative care or euthanasia. Choices like Godard's are becoming more common.
We will start to see a wider and wider spectrum of possible approaches to the care of children with life-limiting conditions. That wide spectrum will be a challenge for doctors and nurses. In some cases, parents will want all available life-support to continue while in some similar cases, they’ll want attentive palliative care. The contrast between the two approaches may cause moral distress for the doctors and nurses who will have to meet the needs of both.
The approach in The Netherlands suggests ways that doctors can support legalized euthanasia while, at the same time, providing excellent intensive care and palliative care. There will be no simple solution to the complex problems that arise in the care of dying children.