World AIDS Day and the End-of-Life Options Movement

November 30, 2023

In a conversation with Barbara Coombs Lee, Compassion & Choices president emerita/senior advisor, I asked why so many advocates for other causes take up the mantle of end-of-life options. She said that the connection is clear: This is a human right that everyone deserves, to live out the end of their lives the way they want. The founders of Compassion in Dying (a predecessor organization to Compassion & Choices) were heavily influenced by the magnitude of tragedy and death during the AIDS epidemic. Barbara advocated for death-with-dignity legislation (that she co-wrote in Oregon) that would offer a peaceful end for dying people. This is a thread shared by others who lived through that era, an unwavering commitment to appropriate end-of-life care and options. So many friends and loved ones of people who died of AIDS continue to be nurses, social workers and end-of-life options advocates.

Those in my generation have a lot to learn from HIV/AIDS advocacy. People were thrust into dual roles: caregivers and advocates for their basic human rights. This is something that comes up again and again, the community efforts at the time and the countless protests of government inaction. Famous groups like ACT-UP provided the framework for protest movements for years to come. Beyond that, hospice grew as a healthcare option for individuals who needed holistic and interdisciplinary care for the end of life.

My work gives me the opportunity to meet LGBTQ+ elders from acclaimed filmmaker Barbara Hammer and her partner, Florrie Burke, to end-of-life options advocates like Mary Klein and her wife, Stella Dawson. Building relationships with dying people and their families reminds me that queer elders are everywhere, between the people who survived and the people whose memory lives on. Allyne Hammer was an end-of-life options advocate for most of her life and up until her death earlier this year. She told me and a group of younger advocates that she felt like she could leave the world and the movement in our hands. This intergenerational love and trust is something we need desperately. We need to care for each other and advocate for ourselves; we need to remember where we came from; and most importantly, we need to dream of a better future for all.

Compassion & Choices
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Patricia A. González-Portillo
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