Hearings News

H2381 – Kelly Testimony Oct 1, 2021

Download Kelly Testimony H2381 2021-10-01.pdf or read below.

Thank you. Everyone knows that doctors make mistakes, and studies show that 12 to 15 percent of people outlive the six-month hospice benefit for supposedly terminal people. But this year Oregon revealed that only 4 percent of its program participants have lived past six months. This suggests that a substantial number, up to one in 10!, ended their lives prematurely because they trusted their terminal diagnosis. For someone who barely escaped a terminal MISdiagnosis with their life, see the 2011 Boston Globe letter by Jeanette Hall. No one would tolerate any other elective, so-called “medical practice” this deadly.

The 2012 ballot question on assisted suicide shows a class and race/ethnic divide: wealthier towns in favor, more working-class towns, both white and of color, against. Brookline 67% in favor, heavily Latinx Lawrence 69% against. Black and Latinx people have long opposed assisted suicide by more than 2 to 1, and often have a well-earned mistrust of the medical system. These laws make dominant the outlook of a professional class obsessed with individual achievement, autonomy, and status – thus the constant use of the word “dignity,” over the worldview of a working-class that relies on a family support system, connection, and reverence for elders. By undermining the value placed on old, ill, and disabled people, these laws promote writing off people as having too low a quality-of-life.

I would like to point to the overwhelming oppression of people living with disabilities. Mainstream reactions to the death toll of COVID-19 were filled with reassurances like “only old and fragile people are dying, we don’t need to worry.”

People like me serve as examples of better dead than disabled in movies like “Me Before You,” “Whose Life Is It Anyway?,” and “The Sea Inside.”

The Oregon reports show that assisted suicide isn’t about physical pain, it’s about escaping the “existential distress” that some people experience over depending on others, of feeling undignified and like a burden, of being incontinent. As leading purveyor of assisted suicide Lonny Shavelson told the Washington Post in 2016, “It’s almost never about pain. It’s about dignity and control.” Shavelson should know, he is the chair of the newly formed American Clinicians Academy on Medical Aid in Dying.

As someone paralyzed below the shoulders, I am terrified of the prospect of a state law sponsoring people’s suicides as rational responses to disability.  Massachusetts should instead fully fund home care and provide world-class palliative care. Equality under the law depends on it.

Articles Referenced

Jeanette Hall, “She pushed for legal right to die, and – thankfully – was rebuffed,” letter to the editor, Boston Globe, October 4, 2011.

“Existential Distress” Madeleine Li, et al, “Medical Assistance in Dying — Implementing a Hospital-Based Program in Canada,” N Engl J Med 2017; 376:2082-2088.

Quotes from Lonny Shavelson and Ira Byock – Liz Szabo, “Death with dignity laws and the desire to control how one’s life ends,” Washington Post, October 24, 2016.