It has been about 14 months since we developed and launched the EOLCNY directive that permits individuals with an early stage of dementia (or those who fear developing dementia) to complete a written directive that limits hand feeding when the disease becomes advanced. As you may know, there are two options: one limits all oral intake once capacity is lost and the disease is advanced and the other limits oral intake to comfort focused feeding. Both are accompanied by good symptom management and require a well informed health care agent who acts with the primary care physician to implement and advocate for the patient’s choice.

As I reviewed the months since our Fall newsletter, I seem to have spent half my time on issues related to the ‘dementia directive’: guiding patients and their families through the completion of these documents, answering emails or phone calls about the pros and cons of completing them, and speaking with other health care professionals across the nation about these documents. The remainder of my time is focused on providing patient and family support to those seeking information about end of life options and choices as death nears.

Increasing attention seems to attend the option of voluntarily stopping eating and drinking (VSED) as a means to hasten dying in the face of serious illness and unacceptable su ering and quality of life. We have been contacted by out-of-state hospices who are interested in creating position statements and guidelines for their clinicians regarding patient requests for VSED. I have been pleased to share what we know of the work of NYS hospices who have developed such position statements. And of course, I continue to provide information about VSED to su ering patients in NYS who remain frustrated by the lack of a legal alternative to hasten death in our state. We must continue to fight for legal medical aid in dying in NYS, as our neighbors have successfully done in New Jersey.