…and learning from Diane and Stephen and all the other activists and thinkers among us. My experience is mostly fighting the legalization of assisted suicide, so I have some catching up to do on other issues facing our community, like organ donation and POLST. I think our continued success lies in working together across disability with all our present and potential allies, such as the Autistic Self Advocacy Network (ASAN), the mental health recov…
[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 1 of the online survey that closed last Friday. John’s response is also available on the Public Policy section of our…
…ST law (Medical Orders on Life-Sustaining Treatment, in some states called POLST for Physician Orders on Life-Sustaining Treatment). Second Thoughts CT testified against a MOLST bill in Connecticut and was successful in blocking its passage. Ms. Freyer opened her article, entitled Health Insight: New R.I. law aims to ease final days of terminally ill, with a story of someone in the late stages of a terminal condition who did not want to return to…
…n’s wishes. Typically, advanced care planning programs, including National POLST Paradigm affiliates, describe the risks of tube feeding while minimizing or ignoring the benefits. How can people be expected to make a decision about this life-sustaining technology when so much of the available information is biased? Clearly, more awareness is needed. People are always shocked when I say that the quality of my life improved dramatically when I got a…
…s of treatment, and to communicate these plans as medical orders using the POLST paradigm form. This would allow the plan to be communicated and recognized in transitions of care. These stages of planning help us organize conversations about future care with the different patient groups and better prepare both surrogates and patient to make the best decision when the crisis occurs. Unfortunately, in many approaches to advance care planning, people…
