Man Says ALS ‘Feels Like Dying in Slow Motion,’ Pleads for Medical Aid in Dying to Avoid ‘Months of Pure Torture’

A Minnesota man living with amyotrophic lateral sclerosis (ALS) is advocating for the right to medical aid in dying (MAID), a practice that is currently not legal in his home state. Tom Albin, who was diagnosed with the progressive neurodegenerative disease, has expressed a desire to have options that ensure comfort and dignity in his final days without the need to relocate.

Albin, a father and longtime ice hockey enthusiast, began experiencing symptoms back in late 2021. Initially, he struggled to speak and swallow, finding it difficult even to enjoy simple pleasures such as drinking water or eating ice cream with his daughter. After a series of medical assessments, he was diagnosed with ALS, a condition that results in the gradual loss of muscle control and ultimately leads to severe incapacity.

As Albin’s health has deteriorated over the years, he has shared his experiences and the emotional toll of living with ALS through personal essays. In one such piece published in March 2023 in The Minnesota Star Tribune, he detailed how the disease has stripped away aspects of his life that he once cherished. “I can no longer speak clearly or eat or drink without a feeding tube,” he wrote, highlighting the loss of independence that accompanies the progression of his illness.

Currently, the option of medical aid in dying is unavailable to Albin in Minnesota. MAID allows individuals with terminal illnesses to choose to end their lives through prescribed medication that they self-administer. This differs from euthanasia, which involves a medical professional directly administering the means of death and remains illegal across the United States. Support for MAID has been growing, with multiple states granting access to it, including California, New Jersey, and Oregon.

Albin articulated the emotional burden faced by patients like him who wish to maintain control over their end-of-life decisions. He acknowledged, “Living with ALS feels like dying in slow motion.” The thought of travelling elsewhere for compassionate end-of-life care weighs heavily on him, not only because of the physical difficulties involved, but also due to the emotional stress of leaving behind familiar surroundings, trusted caregivers, and the circle of loved ones that form an important support network.

On a deeply personal level, Albin wants to spend his final days at home, surrounded by family. He expressed fears not of death itself, but of suffering in a way that strips away his dignity. “What I don’t want is for them to be filled with traumatizing memories of a prolonged death, with me doped up on pain meds, no longer myself,” he stated, emphasising his wish for a peaceful experience guided by his own choices.

Recognising the urgency of the situation, Albin has taken on the role of an advocate. He passionately calls for the legalisation of MAID in Minnesota, asserting that others in similar situations deserve better choices than he faces. “I don’t know how much time I have left; I may not live to see the outcome of this session,” he acknowledged, underscoring the reality of his condition and the pressing need for legislative change.

In his pursuit of dignity in death, Albin has also communicated his story to organisations such as Compassion & Choices. He expressed a desire for the autonomy to choose when enough is enough, allowing him to pass peacefully rather than endure a prolonged and torturous decline. “It would be considerably more humane for me to spend quality time with my family and move on to whatever is next once my suffering is insurmountable,” he remarked.

Through his advocacy, Albin hopes to raise awareness about the plight of patients with terminal illnesses and the importance of having a say in their own end-of-life care. His campaign is not just about his own circumstances, but about shaping a future where individuals can make informed, compassionate choices about how they live—and die—with dignity.