Jon Eisenberg

Jon Eisenberg quite literally wrote the book on the Terri Schiavo case. Michael Schiavo, a Florida man, battled all the way to the Supreme Court to have the feeding tube removed for his wife Terri. Terri Schiavo was a 41-year-old woman who suffered cardiac arrest caused by an eating disorder and existed in a permanent vegetative state for 15 years before her death on March 31, 2005. When Terri’s family fought the decision to remove the feeding tube, their effort became the most publicized end-of-life case at that time. 

Jon stated, “It was March 2005. I was in Washington, D.C. on other business, and while I was there, the case got thrown into a late night session in Congress to push the case into the federal courts. And I thought, Michael’s attorneys are going to have an awful lot of litigation happening right now, and their main office is down the street from the hotel I’m staying at. So I called his lead lawyer, and I said, you want some help? And he said, ‘Sure.’” 

Jon was no stranger to end-of-life autonomy cases, having participated in such cases previously in the California and Florida state courts.  In 2010, he was featured in the Los Angeles and San Francisco Daily Journal as one of “10 Lawyers Who Helped Shape a Decade.” 

In 1998, Jon’s beloved Cousin Ros suffered a stroke and was left with global aphasia at a California hospital with no hope for improvement. Eventually Jon advocated to remove her feeding tube since she had shared with him many times that she would never want to be “kept alive at all costs.” Jon shared this in his book, Right vs. The Right To Die (HarperSanFrancisco, 2005). Apparently, Jon was the first healthcare surrogate to have ever asked that hospital to remove a feeding tube. While he had touched on these cases as a young attorney, this was Jon’s first personal fight for end-of-life rights.

When the book came out, Jon was contacted by Compassion & Choices and asked to speak at meetings across the country. He also joined the  local chapter’s Advisory Board and eventually met Kevin Díaz, chief legal advocacy officer and general counsel at Compassion & Choices. Jon started doing pro bono work with the organization and participated in litigation regarding what’s now the California End of Life Option Act. 

The decade-long Schiavo case glaringly highlighted the ongoing and brutal conflict between faith  and politics. Various advocacy groups opposed to end-of-life choice tried to capture Terri’s story for their own mission. Revisiting the Terri Schiavo story reiterates the extreme importance of advance care planning for people of all ages.  

According to Jon, public awareness of these issues nationwide has increased tremendously since the Schiavo case. Now, every state has codified the right to refuse medical treatment. The Schiavo case shined a very public spotlight and made people realize that they can execute an advance directive and doctors are supposed to follow it. “And now there’s probably double the number of people executing advanced directives since the Schiavo case.” 

Jon discussed the overwhelming importance of documenting your wishes and choosing an appropriate medical surrogate. “I’ve had this unique experience learning about bioethical implications of end-of-life decision making. My advice is to talk with your loved ones about your values and what you consider important to you, not how someone might label your condition but the effect your condition has on your ability to interact with your environment. And most importantly, choose a surrogate who knows your values and is capable of carrying out what you want. Make sure you have conversations with your surrogate to clarify your wishes.” 

Jon is retired now but continues his pro bono work with Compassion & Choices, advocating for expanded end-of-life options including medical aid in dying. “The battleground today is medical aid in dying, which continues to advance in state legislatures  but will eventually have to survive challenges in the U.S. Supreme Court,” Jon said. He’s ready for the challenge.

Visit CandC.org/finish-strong-tools to download tools to assist with your end-of-life planning.

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