Forward in the Face of Resistance: Championing End-of-Life Autonomy and Rights

February Note From the President and CEO

by Kim Callinan
Feb 28, 2024 february 2024 newsletter Kim Callinan Kim Callinan author newsletter

In an era where personal autonomy is under siege, the recent ruling in Alabama that effectively recognizes frozen embryos as children is not merely a legal anomaly; it's a bellwether for a broader, more alarming trend: an attempt by a few to impose their narrow views on everyone and take control over the most personal healthcare decisions we make. Their efforts are far-reaching at life’s end. 

Last year the National Right to Life’s attorney, James Bopp, attempted to hijack the nonpartisan, nonideological Uniform Law Commission’s proceedings to update the definition of brain death included in the Uniform Determination of Death Act of 1980. Under his proposal, as long as a life-support machine keeps your heart beating and chest pumping, you are alive — even if there is no hope you will ever regain consciousness, breathe again on your own or be able to resume everyday life. Bopp claimed he was defending and advancing “natural death.” However, nothing is “natural” about using machines and other extraordinary means to keep a body’s organs functioning after the brain has ceased all activity. The proceedings have been so contentious that the commission missed the deadline for publishing the revised guidelines. The efforts continue, and we remain vigilant.  

Over the years, opponents have consistently maneuvered to erode advance directives and healthcare proxy laws in the courts and legislatures, trying to undermine the principle of patient autonomy. In 2017, Nevada faced proposed legislation that sought to limit the use of advance directives for refusing life-sustaining treatment. Texas considered amendments in 2015 that would complicate honoring patients' end-of-life wishes, especially when healthcare providers objected. There have been numerous attempts within the courts, including two cases we participated in — one in New York and one in California — where we could protect the ability of healthcare proxies to carry out patients' end-of-life wishes.  

Just last week, in an unprecedented move, the West Virginia House of Delegates passed a resolution to attempt to block future efforts to pass medical aid in dying via a constitutional amendment to their ballot initiative, a strategy they successfully used to block future legislative efforts to legalize abortions in the state. This initiative, if passed, would amend the state's constitution to explicitly try to prohibit medical aid in dying. By seeking to constitutionally ban medical aid in dying, West Virginia is setting a precedent that could inspire similar actions in other states, marking a significant escalation in the battle over end-of-life autonomy. And, of course, we continue to defend the California End of Life Option Act against the latest challenge. Since we are in federal court, a ruling against the End of Life Option Act could not only revoke this compassionate choice for Californians but also impact other states.  

While the opposition tries to strip away our rights, our continued progress is undeniable, and we remain focused on carefully allocating our resources to defend as well as proactively advance end-of-life options. The 2024 legislative session has begun as a beacon of hope, marked by bills to authorize medical aid in dying in 18 states, attempts to improve existing laws in three states, and historic progress in Virginia and Minnesota. These achievements are not just victories but a clear signal of the powerful momentum we're building, driven by our supporters' collective will and determination. Together, we are safeguarding our autonomy against those who seek to diminish it and cementing our legacy on the right side of history, ensuring everyone can choose their path at life's end.