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November 2023

Dear Members and Friends,

I’m thrilled to introduce myself as the new Executive Director of the Hemlock Society of San Diego. Amidst evolving laws, societal views, and medical practices, Hemlock Society has been unwavering in its commitment to securing individual autonomy and choice at life’s end. It is an honor to be trusted with the task of leading our organization into the next phase of this critical work. 

I grew up in a family firm in their support of the right to die. My dad was particularly vocal about his wishes and the role he wanted me to play. He told me countless times, “Once I can’t play golf anymore, take me out back and shoot me.” While I’m fairly confident he was speaking in jest regarding the method (my family enjoys dark humor), I’m certain of his intent; once his quality of life began to diminish, he wanted to die and he wanted help doing it. 

My dad retired at 70 and was just beginning to enjoy the fruits of responsible planning and careful saving when he was diagnosed with Frontotemporal Dementia (FTD) in 2020. This devastating form of dementia dramatically changed his personality and ruptured his closest relationships before robbing him of his speech, memory, and mobility. My kind, funny, and independent dad never understood that he is sick or that his behavior, speech, or memory are changing. This total lack of insight into his condition is known as anosognosia, a common symptom of damage to the frontal lobes of the brain.

Gone was his ability to discuss his wishes now that his quality of life was quickly diminishing. Gone too were any of the already limited options available to a person in the early stages of dementia, such as VSED, self-deliverance, or assisted dying in Switzerland. All that was left was to pay for ludicrously expensive 24-hour care, fight with doctors who were resistant to prescribing medication to calm his disturbing symptoms, and plan to withhold supplemental nutrition once he couldn’t feed himself. This is where in this terrible journey my family currently is. The options we’ve pushed so hard to secure for him don’t resemble the wishes he clearly articulated my whole life. My dad’s story is just one example of how decades in, the end-of-life-choices movement still has so much more work to do.

My commitment to this work is shaped not only by my family’s experience. My professional and educational experiences, which at first read might seem unrelated—spanning the fields of education, conflict studies, public diplomacy, immigration, artificial intelligence, and medical technology—have a clear throughline: my belief in the importance of human dignity and the need to guarantee individual freedoms. I’ve worked to improve lives and build better communities, while a Peace Corps Volunteer teaching English in China, a graduate student studying gender issues in the US military, an immigration officer investigating fraud, and most recently as the chief operating officer of a startup driven to improve access to medical care. I’m no stranger to working on tough issues, at the individual, policy, and systemic levels.  

My family’s ongoing struggle with dementia is one I know many of you are familiar with. The questions, “What about dementia?” and “What options will I have if I don’t have decision making capacity?” are asked at every Hemlock Society event. Frustratingly, we have no satisfying answers to those questions. Daunting legal and regulatory hurdles, serious flaws in the American healthcare system, significant social and cultural barriers, financial constraints, and a lack of information continue to prevent adults from determining the time, place, and manner of their death as I believe is their right. Things must change.

Our organization’s role is to educate and advocate for expanding these rights, and support our members securing whatever legal choice is right for them. We will be supportive whether that’s a quiet death at home on hospice, medical aid in dying after a terminal diagnosis in their 40s, self-deliverance in the company of a caring guide, dying while a participant in a clinical trial for a new treatment, or after a final vacation at a Swiss voluntary aid-in-dying clinic.

Over the coming months, I look forward to sharing more details about the new educational events, practical resources, community gatherings, and advocacy efforts we have in store for our members and supporters.

I invite you to reach out to me to introduce yourself, share your stories, or ask questions. We’re in this together, united by the belief that human dignity shouldn’t end when life begins to wane.

With great respect and anticipation,

Sarah Weinstein

Executive Director