Championing Personal Autonomy at the End of Life
We celebrate our country’s desire for and insistence on patient choice at the end of life.
by Kim Callinan
July 27, 2021
Five years ago the California End of Life Option Act took effect. Over the next seven years, we played a leadership role in passing medical aid-in-dying laws in six more jurisdictions, with New Mexico becoming the 11th jurisdiction where eligible terminally ill residents have the right to access medical aid in dying. The New Mexico bill includes several key improvements to the model Oregon legislation, some of which are also being considered in California, where the Compassion & Choices Action Network is sponsoring legislation to make the California law permanent (a necessary step to prevent the California law from “sunsetting”).
This momentum says a lot about our country’s desire for and insistence on patient choice at the end of life. Medical aid in dying serves as a clear signal that patients want to be in charge of their end-of-life care. Its implementation forces the medical system to acknowledge that patients should have a voice and choice in the kind of care they receive. (Listen to a recent American Society on Aging podcast on the topic that I guest-appeared on with Compassion & Choices board member and City of Hope faculty member Dr. Chandana Banerjee.) And when medical aid in dying is implemented, it forces those in the medical community — regardless of whether they support medical aid in dying — to adopt a more patient-centric approach to end-of-life care. In this way, the implementation of medical aid in dying laws has created a move toward patient-directed healthcare similar to the transformation that took place in the childbirth movement decades ago, when women similarly started to demand greater control and options.
Yet, we have much more work to do. In 40 states patients still don’t have the right to medical aid in dying. And even where they do, patients often don’t have the information, tools or support within their medical system to chart the final chapter of their life in a manner consistent with their own beliefs. Never was this more true than during the height of the COVID-19 public health crisis. Tragically, one in five Americans say they had a family member who was seriously ill or died during the pandemic, but they did not know that person’s wishes or values regarding end-of-life care.
During Pride Month in June, we explored the unique set of challenges LGBTQ+ elders face as they prepare for their end of life. LGBTQ+ baby boomers came of age when homosexuality was considered a mental disorder. Having endured a lifetime of discrimination, today’s LGBTQ+ seniors experience greater fear of dying alone or in pain, and are less likely to access high-quality hospice and palliative care. We want to close these disparities in end-of-life care so that LGBTQ+ people have an end-of-life guided by their own compass, not that of others. Check out the work we’ve been doing to bring these goals to life.
On a separate note, I recently wrote a review of a book written by esteemed author and Compassion & Choices executive volunteer Robert Pardi. Chasing Life is a powerful and poignant love story about life, death and respecting choice at life’s end. I found it immensely captivating and inspiring, and thought you might as well.