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Friday, March 1, 2013

Trisomy Awareness Month - Covert Medical Futility Policies

March is Trisomy Awareness Month. Because many of the rare trisomies are still considered "incompatible" and "futile" despite the growing number of "survivors", I wanted to kick off the month by highlighting a family who has helped raise awareness of covert medical futility policies. These policies exist in most hospitals and few states have laws that require disclosure. They result in passive euthanasia that is accepted by the medical community. It is not acceptable or reasonable to the grieving parents who have lost children due to these policies.

Back in April of 2012, I posted about the Kelletts' journey with their much loved and missed son, Peter.   Peter had full trisomy 18 and was doing well despite the condition. But the Kellett's 6 year old son died after an appendectomy.  An independent autopsy proved that the hospital's "cause of death" was not true and his death could most likely have been prevented. Or was it... encouraged / induced / precipitated?  He was most likely subjected to covert medical futility policies that put the power and decision-making solely into the doctor's hands as they allowed him to die by internal bleeding even when the family voiced their concerns about this possibility. Their journey led Mary Kellett on a mission to have medical futility policies disclosed.

In addition to Mary's efforts to change MN laws and make futility policies public knowledge, their story is now being publicized. There are efforts going on in other states as well to make it illegal for hospitals to withhold information about their Medical Futility Policies from families.

  • Peter Kellett and Trisomy 18: Part I - excerpt from the article
    "The doctor said infection from appendicitis had strained Peter's heart to cause death. But the Kelletts weren't believing him. They ordered an independent autopsy, which found no infection. Peter had internally bled to death."
  • Peter Kellett and Trisomy 18: Part II - excerpt from the article
    "She said, "All throughout Peter's life, from the beginning, the only help it seemed we got (from the medical profession) was to help him die. There was a huge difference between the way doctors treated Peter and the way they treated our other kids. It was like they couldn't see the value of his life. The doctor (at his birth) said Peter would never contribute to society. My argument has been that people with disabilities contribute to society in the most important way. They help us become better people. I call them 'teachers of our souls.'"If having known that particular hospital had adopted a futility of care policy, Kellett wouldn't have taken Peter there. She said parents had the right to know these policies existed. She said, "I have a feeling what's behind (these futility of care policies) is saving money. There's a lot of passive euthanasia going on, especially involving kids with disabilities. We're still devastated over how Peter died." 

Please become educated and aware of these issues that parents of trisomy children face regularly.  It isNOT okay to make death decisions based solely on a medical or genetic label and these practices need to stop. "Contribution to society" comes in many more forms than just working and paying taxes. Special needs children hold a very special place in this world - they teach us about our humanity, about unconditional love. To quote Mary Kellett, "I call them 'teachers of our souls.'"

Visit the Medical Futility Blog for more information.
Help support Mary Kellett's 501(c)(3) - Prenatal Partners for Life.  They offer support and information to families who choose to carry to term a baby with an adverse prenatal diagnosis and support for raising a special needs child.

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