‘I’d rather be free than entombed in my body’: One ALS patient’s choice to employ end-of-life law

Last August, my sister Betsy asked if I knew anything about using bitcoin, a form of virtual currency.

It took me a while to realize why she was asking: She wanted to buy a lethal amount of drugs and she didn’t want the purchase to be traceable.

Betsy was diagnosed with amyotrophic lateral sclerosis in July 2013. It’s a cruel disease that slowly robs a person of the ability to move, speak, eat and, eventually, breathe. There is no treatment, let alone a cure, and there probably won’t be for several years.

Early on, she knew she’d rather take her own life than succumb to a disease that kills most of its patients through suffocation. Some ALS patients use ventilators and feeding tubes to prolong their lives, but that’s not what my sister wanted. Over the last year, I watched her increasingly struggle to eat and speak and do the simple things the rest of us take for granted, like scratch an itch or brush a stray hair from her eyes. No longer able to walk, she spent most of the day in bed.

“I am losing strength in my arms and hands quickly,” she wrote to me in an email last year. “I don’t want to live out my life paralyzed, eating through a tube in my stomach and communicating through a machine. I’d rather be free than entombed in my body.”

A month before she asked me about bitcoin, an aid-in-dying bill had stalled in the state Assembly’s health committee.

The End of Life Option Act was resurrected in mid-August 2015, passed and signed into law by Gov. Jerry Brown the following month.

Brown is Catholic, and many were unsure whether he’d sign the bill. In a signing message explaining his decision, Brown wrote: “I do not know what I would do if I were dying in prolonged and excruciating pain. I am certain, however, that it would be a comfort to be able to consider the options afforded by this bill. And I wouldn’t deny that right to others.”

The law didn’t take effect until June 9 this year, but my sister was willing to wait so she could end her life safely and legally.

In early July, Betsy emailed her closest friends and family, inviting them to her house in Ojai for a two-day celebration.

“You are all very brave for sending me off on my journey,” she wrote in an email to her guests. “Thank you so much for traveling the physical and emotional distance for me. These circumstances are unlike any party you have attended before, requiring emotional stamina, centeredness, and openness.”

There was just one rule, she wrote: “Do not cry in front of me.”

More than 30 people showed up to help send Betsy on what she referred to as her next “great adventure.” We ate pizza and tamales. There was music, booze and lots of photos. Under her guidance, I’d put sticky notes next to items around the house, explaining their significance. She invited everyone to “take a Betsy souvenir” to remember her.

About 6:30 p.m. Sunday, July 24, all three of her truly incredible caregivers helped her change into a kimono she’d bought in Japan. A family friend drove her in his new Tesla up a hillside next to the house, where we’d placed a white canopy and a makeshift bed. She wanted to fall asleep as the sun was setting.

My sister is an example of exactly what the law intended to do: allow a dying young woman the ability to assert control over the chaos and uncertainty of terminal illness. She turned death into a reason to celebrate, and she was there to enjoy the party.

Opponents of the aid-in-dying law have argued there’s potential for abuse — that chronically ill people could be coerced or compelled to take their own lives.

There have been stories of miraculous recoveries: During last September’s Assembly vote, one lawmaker talked about her son, who came down with an infection and was put on life support. Doctors told her there was no hope, yet he ultimately recovered. She offered that as proof that a physician’s opinion can’t always be trusted.

Yet a case like that wouldn’t meet the law’s criteria. Patients must be able to make their own medical decisions. There are multiple safeguards in place to ensure the decision is voluntary and the patient’s illness is terminal. No one can simply go to a doctor and request a prescription for a lethal amount of medication.

And if someone wants to fight to the very end, that’s a personal choice. Both paths are equally brave.

Even with the law now in place, there were still some logistical hurdles.

Seconal, the drug Betsy’s doctor recommended, wasn’t available. We were given different reasons why, depending on which pharmacy we called — that it was back-ordered for three months, or that it was so infrequently prescribed, a pharmacist who filled a prescription for the necessary 100 pills would attract unwanted attention from the DEA.

Instead, Betsy was prescribed a combination of morphine, pentobarbital and chloral hydrate — not ideal, but we did our best to mask the taste with coconut milk, sugar and a little salt. She took the medication around 6:45 p.m. and within a few minutes slipped into a coma. Four hours later, she peacefully departed for her next adventure.

Davis is a contributor to the San Diego Union-Tribune.

local@sduniontribune.com

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