Months after the fact, one mother admits she and her husband have still told no one about their heart-wrenching decision to have food and fluid tubes removed from their dying child.
“I thought a lot of people would think it was disgusting and horrible and murderous if we ever said that we were going to take away the food,” the woman told researchers behind a new Canadian study. “I just thought that people would think it was, you know, paramount to murder.”
Yet she and almost a dozen other parents surveyed by a team at Toronto’s Sick Kids hospital said ending artificial nutrition actually made their children more comfortable and peaceful in their final days.
The unique study’s authors conclude that removing feeding and hydration tubes from young, terminal patients is a process medical staff should make available — and without exposing parents to health workers’ personal objections to the practice.
The benefits in some rare cases are well known to the few specialists who work with child palliative patients, said Dr. Adam Rapoport, the study’s lead author. Many other health professionals, however, likely do not even consider the possibility, he said.
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Taking the step can actually reduce the patient’s suffering — preventing bloat and vomiting — and is considered medically, legally and ethically acceptable, the study authors stress.
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Yet their frank discussion of the topic recently in the journal Pediatrics is already creating controversy, with two doctors from the Mayo Clinic suggesting that ending artificial nutrition may actually harm children.
In fact, some faith-based hospitals in the United States do not allow the practice with children at all, said Dr. Rapoport, who acknowledged it is a highly charged issue.
In a response published by Pediatrics, Dr. Mohamed Rady, a critical-care physician at the Mayo hospital in Arizona, said he disagrees that removing nutrition is a “legitimate form of palliation” in children. He and a colleague argue it is doubtful that artificial feeding causes pain and suffering for most patients, and that little is known about the possibility of harmful side effects from removing food.
Not allowing parents to hear from health-care workers who have objections “violates the ethical and legal underpinning of informed consent,” they also charge.
But a separate commentary in the journal suggests the findings, while based on a very small sample, provide some reassurance the practice can be therapeutic, despite the “complex medical, ethical, religious, political and social currents” around it.
The measure is used relatively rarely but is appropriate for those terminally ill children for whom feeding is “horrible,” causing discomfort, pain and infection, said Dr. Mary Bennett, a critical-care physician at the B.C. Children’s Hospital.
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