Marie winced with each step as she used a walker to move around her tiny San Diego apartment on a recent overcast morning.
The 52-year-old former intel analyst, who did not want her full name used to protect her medical privacy, is afflicted with three rare diseases: a connective tissue disorder called Ehlers Danlos syndrome, mastocytosis which causes immune cells to collect, and a heart condition known as postural tachycardia syndrome. Her 15 medications barely give her comfort.
“I have intractable migraines, and it affects my eyes,” Marie said. “All my joints are unstable at this point, and so it’s very painful with my body trying to grab on, and it creates knots. I am just never comfortable. Even laying down can be painful.”
Last year, Marie was approved by doctors for a lethal drug cocktail that would allow her to die peacefully instead of having to endure what she called a “Dante’s Inferno” of suffering toward the end.
She has that right in California under the state’s End of Life Option Act. The law gives terminally ill people with six months or less to live the choice to “self-ingest” a fatal dose of medication under the supervision of a doctor. This most often happens in a hospice.
But it wasn’t easy for Marie to find a hospice in San Diego County that participates in medical aid in dying. A KPBS review of 94 hospices in the county showed only a handful of local hospices partake in the practice.
All California healthcare entities, including hospices, must post their policies on medical aid in dying on their websites. Nearly 16 months later, KPBS found that fewer than 10 are following the law.
The End of Life Option Act allows hospices to decline to participate. But since January 2022, it has required all California healthcare entities, including hospices, to post their policies on medical aid in dying on their websites. Nearly 16 months later, KPBS found that fewer than 10 are following the law….
Original story on KPBS.