[Editor’s Note: Cathy Ludlum submitted this response to the IOM Committee’s online survey on Oct. 31, before the Nov. 1 deadline, so this is a belated sharing of her excellent input. Let’s hope they pay attention as they prepare their final report that is due in 2014.] Question: If you are an individual living with … Continue reading Cathy Ludlum of Second Thoughts CT Responds to IOM Committee on Approaching Death
This week, November 11, the Board of Directors of the Organ Procurement and Transplantation Network (OPTN) adopted a policy that removed two major threats to people with disabilities posed by previous proposals. This is the key paragraph: 2.8 Requirements for Controlled Donation after Circulatory Death (DCD) Protocols Introduction: Donation after Circulatory Death (DCD) describes the … Continue reading Disability Rights Victory in Organ Procurement Protocols – Persistence Pays Off
[Editor’s Note: In my full written comments on POLST submitted to the IOM Committee in July, I mentioned, “One advocate I know suggested that we need a disability educational campaign called ‘We Love Our Tubes’ or ‘Tube Pride.’” That advocate was John Kelly. Here, he tells more of his story to the Committee, responding to Question … Continue reading John Kelly’s Response to IOM Online Survey or “We Love Our Tubes!”
Today, November 1st, is the last day to provide input to the Institute of Medicine’s Committee on Approaching Death via their online survey, the subject of a previous blog. Yesterday I took the opportunity to submit the following personal story involving some disturbing communications from medical professionals a couple years ago when I had some … Continue reading Last Day to Submit Input to IOM Committee on Approaching Death – Personal Story
I’ve previously reported on disability community efforts to influence the workings of the Institute of Medicine’s Committee on Transforming End-of-Life Care, now renamed the Committee on Approaching Death. At the outset, NDY filed comments and issued a press release urging the Committee to add disability representation, specifically Kelly Buckland of the National Council on Independent … Continue reading Institute of Medicine’s Committee on Approaching Death Requests Public Comments Via Online Survey By November 1st
