NCD Comment by John Kelly, December 5, 2013, Topeka Kansas
“New Disability and the Rush to Judgment”
My name is John Kelly and I am the New England Regional Director for Not Dead Yet. I want to speak to NCD’s long-standing commitment to the essential principle of self-determination.
Last month, Indiana hunter Tim Bowers fell from a tree and broke his neck. Bowers breathed on his own until help arrived, 5 or 6 hours later. At the hospital, he was intubated, placed on a ventilator, and put under sedation to spare him physical discomfort.
Less than 24 hours later, news reports had doctors predicting that Bowers would “likely spend the rest of his life in a hospital bed, attached to a respirator unable to hold his soon-to-be-born child. “
Bowers’ wife Abbey said “The last thing he wanted was to be in a wheelchair. To have all that stuff taken away would probably be devastating. He would never be able to give hugs, to hold his baby. We made sure he knew that, so he could make a decision. Even if he decided the other thing, the quality of life would’ve been very poor. His life expectancy would be very low.”
“We made sure he knew that so he could make a decision,” his wife said. But what Tim Bowers was led to accept as truth about his future was false. His tragically unnecessary death is another in a line of “rush to judgment” cases, in which newly disabled people are immediately steered towards death.
I have almost exactly the same injury as Bowers and I know that reliable prognosis requires the passage of time. Weeks or months under ventilation was typical at my rehabilitation hospital. In the spinal cord injured community, we know people who weaned off ventilation. We also know many people who have led thriving lives with breathing assistance, whether by ventilator, oxygen, or continuous pressure CPAP/ BiPAP.
Tim Bowers deserved to get the same suicide prevention services offered to any other person in the throes of trauma. Instead, he was given an incomplete and hasty prognosis and false certainty of future suffering. No one told him about all the opportunities open to him, or about the adjustment and adaptation that follow in time.
Based on this misinformation from doctors, and his and his loved one’s fears about life in a wheelchair, Tim Bowers gave his consent to dying on the first day after his injury. In no way was his decision based on informed consent.
We urge NCD to investigate the ways in which state health laws are being distorted and abused. Meaningful self-determination gets bypassed and obstructed in favor of a rush to judgment that cuts short the lives of newly disabled people based on ignorant and outmoded judgments about quality of life. We urge NCD to come up to speed on health care decisions laws because national guidance is needed to help reshape these laws to prevent discrimination in these life and death judgments. My written comments include action steps.
We also understand that NCD has been cultivating relationships with state legislators; and just like your great work with parenting rights issues and others involving state laws, we urge you to be ambassadors to state policy makers and ask you to help us share our concerns with them.
Thank you for your time today.
John B. Kelly
New England Regional Director
Not Dead Yet