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When the Law Blocks a Peaceful Death: The Fight to Expand Medical Aid in Dying Access







What if the law makes you wait until it’s too late to choose at all? 


For people with illnesses like dementia or other progressive neurodegenerative diseases, this is not a thought experiment. It’s the corner they’re backed into by the way medical aid in dying (MAiD) laws work in the U.S. 


The law requires: 


  • A terminal diagnosis with six months or less to live 

  • Mental and physical capacity to request and self-administer the medication 


For people with progressive illnesses, that combination is nearly impossible. You may have full cognitive awareness for years, but by the time you meet the six-month rule, you might no longer be able to speak, swallow, or sign your name. And in most states where MAiD is legal, no one is allowed to help you. 


When I talk to people about death and what they want their lives to look like before that point, they often describe a line they don’t want to cross. It’s different for everyone, but it’s always there. 


“If I can’t remember who I am or who you are, just let me go.” 

“If someone has to feed me because I don’t even know I’m hungry, that’s not living.” 

“If I’m just sitting there, in a diaper, staring into space and not reacting to anything around me, just let me go.” 


People know what they’re willing to live with. The tragedy is that the system doesn’t care. Unless you have the financial means to travel to a country like Switzerland, you’re often left without options. 


Why the Law Doesn’t Work for Everyone 


Medical aid in dying laws were designed with a narrow picture of illness in mind, often a late-stage cancer diagnosis, where mental and physical capacity are still intact. These laws weren’t built for people with diseases that unfold more slowly, or that rob someone of their ability to speak, move, or remember. 


For someone with ALS, the mind often remains sharp even as the body shuts down. But under the current law, if you can’t physically lift a cup or push a plunger, you would be disqualified, even if you meet every other requirement. No one can legally assist you, even with something as basic as holding a straw to your lips. 


People with dementia face a different kind of wall. You can only request MAiD if you’re mentally competent, but you must also be terminal. By the time dementia qualifies as terminal, you’ve likely lost the cognitive ability to make that request. Even if you planned for this, even if your wishes are in writing, even if your family is aligned, the law doesn’t allow advance consent. 


These aren’t edge cases. They’re the people who most want a say in how they die and who are most often denied it. 


The System Forces a Cruel Tradeoff  with Medical Aid in Dying


People are forced into an impossible situation when the law offers MAiD as an option but shuts people out when they try to use it. Some may feel pressure to end their lives earlier than they want, to ensure they can still meet the legal requirements. Others wait, hoping for a sign that the time is right, and then find that the window has closed. 


Even those with resources face steep barriers. Traveling to Switzerland for an assisted death is only possible for people who are well enough to fly, who have strong family support, and who can afford the cost. Most people are left without good options. 


Some try to use alternatives like voluntarily stopping eating and drinking (VSED), which is legal but emotionally and physically demanding. Others connect with organizations like Final Exit Network, which operates in a legal gray area and offers guidance for those who are otherwise excluded from the law. Some rely on palliative care and hope their symptoms can be managed until the end. But none of these are substitutes for having real, legal access to a choice. 


A more humane system would recognize that progressive illnesses come with different timelines and different challenges. It would allow people to express their wishes in advance and trust those wishes to be honored. It would provide legal pathways that account for physical limitations, cognitive decline, and the dignity of being helped. 


California briefly considered a bill modeled after Canada’s system, which focuses not on specific diagnoses or timeframes, but on whether a condition is grievous, irremediable, and intolerable to the person living with it. That bill didn’t move forward. But efforts like that point in the right direction. 


Public awareness is part of the problem. Many people don’t realize the law won’t help them if they develop dementia. Some don’t even know MAiD exists in their state. And lawmakers aren’t likely to act until more of us start asking hard questions and demanding better answers. 


If This Matters to You, Don’t Wait to Talk About It 


If you have strong feelings about your quality of life, make them known. Talk to your family. Put it in writing. Choose a healthcare proxy who understands your values and will speak for you when you can’t. 


And if you believe that people deserve real choices at the end of life, lend your voice to the push for better laws. Join advocacy groups. Share your story. Help others understand that this isn’t about suicide or giving up. It’s about preserving dignity, honoring clarity, and letting people decide when enough is enough. 

 

 

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