End of Life Choices New York - Spring 2019 Newsletter
Spring 2019 Newsletter
May 30, 2019
Video: “End of Life Choices in New York State that Permit a Patient-Hastened Death”
May 30, 2019

Dementia Directives and VSED

Pictured above: EOLCNY board member Peter Strauss, JD, Sarah Egan, MD, and EOLCNY Clinical Director Judith Schwarz, PhD, spoke about advance directives at a meeting of Judges and Lawyers Breast Cancer Alert.

Dementia Directives and VSED

By Judith Schwarz, Clinical Director

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.

I have recently become involved in a new venture related to the topics of a VSED hastened death by contemporaneous choice or by an advance directive that limits oral intake once capacity is lost. A book proposal that discusses these two topics was recently accepted by Oxford University Press. Written by me and three well regarded experts from different professional backgrounds, the book would be the first of its kind to address the legal, ethical, clinical, institutional, and personal/family issues involved in a VSED choice. Sixty percent of the book will focus on contemporaneous VSED choices made by capacitated patients under a variety of clinical and institutional circumstances. The remaining 40% of the book will be dedicated to VSED by advance directive – a much more clinically contentious and legally uncertain choice. We hope that it will be of interest to clinicians, ethicists, and lawyers, as well as patients and families who seek comprehensive information about these options.

My co-editors include Dr. Timothy Quill, a palliative care physician at the University of Rochester School of Medicine, Paul Menzel, a philosopher and Professor Emeritus of philosophy at Pacific Lutheran University in CA, and Thaddeus Pope, JD, PhD, Director of the Health Law Institute at Mitchell Hamline School of Law in MN. I am honored to be included in such a group of experts; our book is due to be completed by the end of 2019.


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