Opinion: California Alzheimer’s Patients Deserve the Right to Choose Medical Aid in Dying

By excluding those with Alzheimer’s disease from California's medical aid in dying option, we are denying them the right to die with dignity, forcing them to endure a prolonged and often agonizing decline.

Opinion: California Alzheimer’s Patients Deserve the Right to Choose Medical Aid in Dying
Alzheimer's brain
PET scan of the brain of a person with Alzheimer's disease showing a loss of function in the temporal lobe.
PET scan of the brain of a person with Alzheimer’s disease showing a loss of function in the temporal lobe. Photo by National Institute on Aging via Wikimedia Commons

As we mark Alzheimer’s Awareness Month, we honor the millions of Americans and their families navigating the profound challenges of this devastating disease. Yet, amidst our awareness, we must confront a harsh reality: California’s medical aid in eying, or MAID, option currently excludes those who may need it the most — individuals in the early to mid-stages of Alzheimer’s disease who still possess cognitive capacity.

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Alzheimer’s affects an estimated 720,000 people in California, a number projected to rise to 840,000 by 2030. Despite this growing crisis, our laws fail to provide a compassionate option for those facing the terrifying loss of cognitive function.

Many people in the early to mid-stages of Alzheimer’s retain the mental ability to make informed decisions about their end-of-life care but live in fear of a future where that ability is lost. They are aware of what lies ahead — a slow decline into confusion and dependency. Allowing these individuals access to MAID would enable them to make a proactive, dignified choice about their end-of-life care, preserving their autonomy.

California’s End of Life Option Act, passed in 2016, was a significant step forward in providing terminally ill adults with the choice to end their lives peacefully and on their own terms. However, the law’s requirement for mental competence at the time of request, and the ability to self-administer the medication, effectively excludes Alzheimer’s patients, whose cognitive decline is a hallmark of their illness. While Alzheimer’s is undeniably a terminal illness, its progression is unpredictable, making it nearly impossible for patients to time a request for MAID before losing their decision-making capacity.

This is more than a legal issue — it is a moral one. By excluding those with Alzheimer’s from accessing MAID, we are denying them the right to die with dignity, forcing them to endure a prolonged and often agonizing decline.

My mother was among those denied this choice. Diagnosed with Alzheimer’s, she made the brave decision to travel to Switzerland, where she could end her life on her terms, with dignity, and surrounded by her daughters. The fact that she had to leave her home and country to achieve this is a travesty. No one should have to cross international borders to die with dignity.

California has long been a leader in end-of-life care, but it is time to extend this compassion and dignity to individuals with Alzheimer’s disease. We must revise the End of Life Option Act to allow those in the early to mid-stages of Alzheimer’s, who still have cognitive capacity, to qualify for MAID. Many people with dementia would prefer a peaceful, dignified death over years of decline in a care facility, even if it means giving up good days to avoid bad years. They deserve the right to make this choice.

My mother’s journey to Switzerland was not just an act of self-determination; it was an indictment of a system that forced her to leave her home to die peacefully. It’s time to change the law so that people like my mother can choose to die with dignity in their own homes, surrounded by loved ones, without the need for international travel. We owe it to those facing the devastating reality of Alzheimer’s to provide them with the same end-of-life choices available to others with terminal illnesses.

This Alzheimer’s Awareness Month, let’s take action. It’s time to ensure that those with Alzheimer’s can live their final days with dignity, compassion, and control.

Christie Golemb is vice president of A Better Exit, a Cardiff-based advocacy organization.