The Canadian Paediatric Society published Barbara Farlow’s commentary, “The decision to accept disability: One family’s perspective” in its May June issue of its journal, Paediatrics and Child Health. The commentary begins:
At 21 weeks’ gestation, we were informed that our daughter, Annie, had a genetic condition association with profound disabilities. Thus began the most difficult and, ultimately, most enriching journey of our lives. We realized it was highly likely that Annie would require life-saving interventions in her infancy. From the outset, we wrestled with an agonizing, moral question: Would these interventions and the preservation of her life be in the best interest of our daughter and our family?
Farlow’s infant daughter Annie died in a Toronto hospital after doctors placed a Do Not Resuscitate order in the baby’s chart with no consultation with family members. The case raises serious issues about physicians’ role in overriding parental decisions to keep their children with significant disabilities alive. You can download (for free) Farlow’s short commentary from the Journal website; it’s the second item “Commentary” in the table of contents that you find at either link.
I agree with Rob – it would be very interesting to hear what the hospital has to say.
This situation is horrifying, and I can’t imagine how angry her parents must feel. The doctors not only (inappropriately) judged, and had the power to enforce, who lives and dies, but (as the title of the post suggests) how they die.
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Barbara Farlow has posted a series of reflective essays on the death of Annie at the Living with Trisomy 13 website. There is a Human Rights hearing on the case in Ontario tomorrow, I believe.
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