Before it’s too late, let my husband choose how his story ends
The Boston Globe
Last updated: June 15, 2026
The article details the devastating impact of a terminal ALS diagnosis on a young, healthy husband and father. It highlights his progressive loss of physical function and his strong desire for control over his end-of-life choices, specifically advocating for medical aid in dying. The piece urges the passage of the End of Life Options Act in Massachusetts to grant this right.
- The author's husband, Scott, a healthy 38-year-old, was diagnosed with Amyotrophic Lateral Sclerosis (ALS) in April 2021, shortly after his wife discovered she was pregnant with their second child.
- Over two years, Scott's condition worsened significantly, leading to wheelchair dependence, weakening arm strength, and difficulty breathing and speaking. He lost the ability to drive and perform daily self-care tasks.
- Despite his physical limitations, Scott remains actively involved in his children's lives, prioritizing his quality of life, independence, and dignity.
- Scott has explicitly stated his wish to avoid being kept alive by machines, seeking to control the timing of his death to prevent prolonged suffering.
- The End of Life Options Act, currently under consideration in Massachusetts, would permit mentally capable, terminally ill individuals to request medical aid in dying under strict regulations.
- The author argues that this legislation is crucial for Scott to retain agency over his final moments and for their young children to have a less traumatic farewell.
- The article advocates for the passage of the Act, emphasizing the need for compassion for families facing terminal illness.
