By Jessica Kaan, DO, MPH
Medical Director, End of Life Washington
Understanding ALS and Its Impact on End-Of-Life Choices
ALS (amyotrophic lateral sclerosis) can be one of the most devastating diagnoses a person can receive. It cruelly and steadily takes away the body’s ability to move, speak, swallow, and breathe, all while leaving the mind fully aware. For those living with ALS, conversations about end-of-life choices, including Medical Aid in Dying (MAID), often come earlier and with more urgency than for many other terminal illnesses.
As a physician who provides aid-in-dying care in both Oregon and Washington, I’ve had the privilege of walking alongside many people with ALS and their loved ones. Their stories have profoundly shaped my understanding of how MAID can honor autonomy, relieve suffering, and uphold dignity, even in the face of an illness that takes so much away.
ALS does not follow a single pattern. Some people develop limb-onset ALS, which typically begins with weakness in the arms or legs and spreads gradually. Others have bulbar-onset ALS, which affects the muscles that control speech, swallowing, and breathing. Bulbar ALS often progresses more quickly and can cause early challenges in communication and nutrition. For these patients, the physical ability to self-administer medication may be lost long before they lose mental clarity, and this reality deeply shapes conversations about end-of-life options.
For those exploring the option of MAID, this presents real challenges. In Washington and Oregon, as in all U.S. jurisdictions with MAID laws, eligible patients must have a terminal illness with a life expectancy of six months or less, retain decision-making capacity, and be able to self-administer the medication. On paper, that process looks straightforward. In real life, each step is complex and deeply personal.
Most people with ALS meet the medical eligibility criteria for MAID as their respiratory or swallowing function become significantly impaired. But, the window of time in which they remain able to self-administer, whether via swallowing, using a feeding tube, or pressing a plunger on a syringe, can be narrow. Because of this, conversations about MAID often need to begin early, while patients can still communicate clearly (whether verbally, typing, using an eye-motion device, etc.) and participate fully in decision-making.
As discussed in the 2024 Journal of Aid in Dying Medicine article, ALS patients disproportionately choose to die via MAID. I’ve also noticed a gradual increase in the number of ALS patients seeking the option of MAID in the past few years. This likely reflects a combination of greater public awareness, earlier discussions in neurology and palliative-care clinics, and more open cultural dialogue about end-of-life choice.
Traveling for Access: When MAID is Out of Reach at Home
Now that Oregon no longer requires state residency to use its Death with Dignity law, some ALS patients have chosen to travel to Oregon to pursue MAID when it isn’t accessible where they live. For people with impaired motor function or communication abilities, that decision can be especially difficult. Travel requires coordination, accessible lodging, equipment transport, and often caregiver support. For those whose mobility is limited, even short trips can be exhausting or unsafe. Some patients have told me they chose to use MAID earlier than they otherwise would have, simply because they feared losing the ability to travel, or to self-administer, if they waited.
This reality exposes the troubling inequities that can arise when geography dictates access to a lawful, compassionate medical option. For a disease that steadily narrows a person’s physical world, being forced to cross state lines to exercise autonomy over one’s dying process feels burdensome and unfair.
How ALS Progression Shapes Medical Aid in Dying Conversations
Discussions about MAID are rarely just about law or logistics. They’re about agency, identity, and fear of what lies ahead. Many people with ALS tell me they are not afraid of death, but they are afraid of how they might die. They are afraid of being unable to move, speak, or breathe on their own, of being trapped in a body that no longer responds to their mind’s commands. MAID, for some, represents a way to maintain a measure of control and dignity in a disease that otherwise takes so much away.
Loved ones often have mixed emotions: wanting more time with their person, while also wanting to honor their choices and not wanting to see them suffer. My role is to create space for those conversations, to provide accurate information, to normalize the range of emotions, and to remind them that the decision can be reconsidered at any point along the way. Whatever path they choose will be respected and supported. Sometimes that means moving forward with MAID; sometimes it means choosing not to. Both are valid options and equally deserve compassionate care.
What stays with me most is not the procedural aspect of this work, but the profound humanity of the people I meet. Even as their bodies weaken, their love for their people and desire for dignity remain.
The particular challenges of ALS underscore the importance of having end-of-life options that offer dignity, autonomy, and connection. As more states consider Medical Aid in Dying laws, the voices and experiences of people with ALS must be part of the conversation. Their stories illuminate the core of what this law is meant to protect: the right to make deeply personal choices about how we face the end of life.
Death with Dignity exists to support end-of-life freedom or patients facing a terminal illness such as ALS. Please donate today to support this deeply personal choice.
About the Author:
Dr. Jessica Kaan, DO, MPH, is an internal medicine and hospice physician who serves as Medical Director for End of Life Washington. She began working in medical aid-in-dying care in 2018, when she discovered that patients in southwest Washington were unable to find a prescribing provider. Motivated by a commitment to ensuring access for eligible patients, she began volunteering as both a consulting and prescribing physician.
Since then, Dr. Kaan has provided end-of-life care across Oregon and Washington. In 2022, she became Medical Director for End of Life Washington, where she has focused on expanding access, education, and support for patients and clinicians involved in medical aid in dying. Her work includes a particular emphasis on encouraging and supporting hospice organizations to integrate aid-in-dying services into their care models.
Dr. Kaan also serves as the Associate Director for Clinical Investigations at the Academy of Aid-in-Dying Medicine and is a member of the editorial board for the Journal of Aid in Dying Medicine.