Sue’s farewell: A Palo Alto ‘end-of-life’ story

Almost completely bedridden, in pain and determined to avoid the grim final stages of her rare neurodegenerative disease, Sue decided it was time to legally end her life. She had researched California’s End of Life Option Act more than a year earlier, and meticulously complied with each step of the law.

On her chosen day in March of last year — having said her farewells to devastated, but accepting, family and friends — Sue, 78, sat up in the hospital bed in her Palo Alto home, kissed her husband and drank a lethal dose of medication that had been prescribed by her physician.

Sue’s husband, Ralph, offered a tender account of his wife’s use of California’s law at a recent gathering at Avenidas Village, a membership organization that provides resources and support to seniors who choose to age in their own homes. He decided to share his story to provide insight and dialogue on a topic that’s not always easy to talk about.

Ralph said it was important to Sue that her family accept and support her choice, though some members might not have made the same choice for themselves.

“It was as dreadful experience as I’ve had, but I really don’t think it’s any different than having a loved one who died on their own,” said Ralph, who asked that their full names not be published. “I miss Sue terribly — I still do and I always will.”

In June 2016, California became the fifth state to allow physicians to prescribe drugs to terminally ill adults who are of sound mind and request such assistance to end their lives. The End of Life Options Act requires patients to take specific steps to obtain the lethal prescription, including two oral requests — at least 15 days apart — to a physician, a written request, and separately, confirmation by a different physician.

During the first 2 1/2 years after the law took effect, prescriptions were written for 1,108 patients, according to the California Department of Public Health.

But because the law was so new at the time of Sue’s decision, many healthcare professionals were not familiar with the process, Ralph said. Sue’s neurologist, as well as her primary-care physician of 30 years, had no experience with the law, he said.

And when Sue decided it was time to ingest the lethal medication, the owners of the small care facility in Sunnyvale — where she’d lived in her final months after Ralph could no longer care for her — refused to allow her to do it on their premises. That necessitated a complicated transfer back to the couple’s Palo Alto home.

A hospice social worker, who helped care for Sue in her last four months, arranged to move Sue’s hospital bed back to Palo Alto and to transfer her by ambulance.

“All this occurred like a whirlwind in the course of 24 hours,” Ralph said.

“In the meantime, Sue’s doctor, who’d never been through this before, had contacted Compassion & Choices (a nonprofit that advocates for patient-directed care at the end of life) and been educated about how to proceed with the paperwork and how to deal with the medication.”

Ralph said the physician had trouble finding a pharmacy that was willing to grind up the medication.

“It was questionable right down to almost the last minute, and finally they said ‘Yes, you can pick it up,'” Ralph said.

When Ralph asked the pharmacist what he should expect, the pharmacist said he wasn’t sure because he’d never filled such a prescription.

The next morning Sue was determined to drink the medication. Within five minutes, she was unconscious. She remained in that state for 10 hours, Ralph said.

“During those 10 hours, although she was unconscious, and I’m sure she didn’t feel anything, it was agonizing for her daughter and me,” Ralph said. “We had no idea what to expect.”

Christina Goodwin, California state manager for Compassion & Choices, said physicians today have a combination of medications that work more quickly, putting patients to sleep within 5 or 10 minutes and taking full effect within two hours.

“We have no reported incidents of abuse, misuse or coercion,” Goodwin said.

In 2018 — the latest reporting period available — 180 physicians prescribed aid-in-dying drugs to 452 individuals across the state, according to the health department. About 69% of patients had malignant cancers, followed by 13.1% who had neurological diseases, such as ALS or Parkinson’s disease. Nearly 90% were receiving hospice or palliative care.

A 2019 survey by the California Health Care Foundation found that 3 in 4 Californians support the law, which was initially appealed and then reinstated by the California State Supreme Court.

Colorado, Hawaii, Maine, Montana, New Jersey, Oregon, Washington, Vermont and Washington, D.C., have similar legislation.

In signing the End of Life Option Act in 2015, then-Gov. Jerry 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.”

More about California’s End of Life Option Act

California’s End of Life Option Act became effective on June 9, 2016. The Act allows terminally ill adults living in California to obtain and self-administer aid-in-dying drugs. The Act requires the California Department of Public Health to provide annual reports. Here are highlights from 2018, the latest reporting period available:

• One hundred and eighty physicians prescribed aid-in-dying drugs to 452 individuals.

• Of those patients, 314 died after ingesting the prescribed drugs; 59 died from their underlying illness or other causes; the “ingestion status” of the remaining 79 cases was unknown.

• The median age of patients who died from the drugs was 74.

• 76% of those patients were between 60 and 89 years old.

• 51% were female.

• More than 80% had at least some college education.

• More than 88% were white.