Four years after Alamo resident Brittany Maynard moved to Portland to seek aid in dying — a wrenching event that inspired passage of the stateâ€™s historic End of Life Options Act — terminally ill Californians are once again planning to flee the state.
A surprise ruling last month by a Riverside County judge, tossing out the law, is creating upheaval for families who thought they had a plan. Anxiously, theyâ€™re preparing to pack up for Oregon, far from friends and family, where life-ending medication is still legal. Their lives in turmoil, they asked that their real names not be used.
â€śIt is very difficult,â€ť said Karen, 72, of Scotts Valley, who suffers from end-stage renal failure and now plans to leave her home of 18 years for a move to central Oregon. â€śI’m exhausted. It will be changing my whole life, while Iâ€™m dying.â€ť
In San Jose, 29-year-old Lily has located a doctor and possible rental apartment in Portland for her mother, who hasÂ metastatic bile duct cancer. Unless California suddenly reverses course, she is braced for packing, new paperwork and a difficult 10-hour drive in the familyâ€™s SUV.
â€śThis is not a complication that we need now,â€ť said Lily, who with her brother is providing around-the-clock care for her mother, 60, an extrovert and global traveler who is now frail and incontinent.
â€śThe hope is to get the drug regardless of when she needs it, to let her feel like sheâ€™s in control and has that option, if the suffering is unbearable,” she said. “This is something we want ASAP.â€ť
Their predicaments are identical to that faced in 2014 by Maynard, a 29-year-old newlywed with brain cancer who, had she not been able to end her own life, could have died an awful death. It was a thought that terrified her.
â€śShe said that as a last resort, weâ€™re moving to Oregon,â€ť recalled husband Dan Diaz, in an East Bay Times interview. But she was unhappy about having to relocate herself, her husband, her dogs and her parents in order to control her dying process, he said.
â€śUnfortunately, it ended up becoming reality,â€ť said Diaz, who was with her when she died, peacefully, in a rented Portland house. When Maynard finally came home to Alamo, it was after her cremation, in an urn.
Three months after her death, California senators Bill Monning,Â D-Carmel, and Lois Wolk, D-Davis, introduced legislation, modeled after the Oregon law, that allows terminally ill, mentally competent patients to seek aid-in-dying medication when certain criteria are met.
The law took effect June 2016, and state data shows that in the first six months, about two-thirds — or 111 of 191 prescriptions â€“ were taken.
But now it’s under legal attack. In a decision last month, a Riverside County Superior Court Judge Daniel Ottolia found it unconstitutional. His ruling is narrow and technical, based on his finding of a procedural misstep: The law wasnâ€™t enacted correctly.
The state says it will appeal the ruling.
Meanwhile, hospices, doctors and all major hospital systems â€“ including Stanford, Kaiser Permanente, UC-San Francisco, John Muir and California Pacific Medical Center — are suspending access to the medication.
“I am horrified that the Riverside Court action is directly impacting terminally ill Californians who seek only to control their final days with their families — and who now must consider moving to Oregon to preserve their right to a compassionate transition,â€ť said Sen. Monning.
â€śDuring the litigation of this case, it would seem appropriate for the courts to protect those for whom the law was passed,”Â he said.
Dr. Lonny Shavelson, a former emergency department doctor whose Berkeley-based practice Bay Area End of Life Options works with patients who could not find a doctor to write a prescription to end their lives, discourages patients from moving.
â€śIf this is about quality of life and quality of death, you donâ€™t enhance that by uprooting you and your loved ones by moving to another state, establishing residency, finding two new independent doctors and working with a new hospice,” he said. â€śThat doesnâ€™t seem like a good way to spend the last few weeks of your life.â€ť
And he grieves the loss of patients he has cared for and promised to help.Â But he understands their plight.
â€śI think the abruptness and seeming unfairness of this decision, and the fact that a plan was in place and now it isnâ€™t â€“ that creates a sense of panic,â€ť he said. â€śPeople are sick, and the most significant option for them is suddenly taken away. With nothing to replace it.â€ť
Karen is angered by the choice that now confronts them. While they own property in Oregon, they have no friends or family there.
“Young people have a lot of energy and can get up and move,” she said. “But when you’re old, and sick, it is a very difficult to do. It is an incredible chore to try to even think about moving. My husband has a full-time job and still has to go to work in Silicon Valley several days a week. I canâ€™t do much of anything.”
“I’m trying to live out my life and die in a peaceful manner,” she said. “WeÂ have more control over ending our pets’ lives than our own, with what’s happening now.Â It was made legal — then they took it away.”
Lily is still stunned by her mother’s quick decline. Independent and optimistic, her mother traveled extensively with friends and family, recently attending all four major tennis championships â€“ the French Open, Wimbledon, U.S. Open and Australian Open. Two months ago, after severe pain, she was diagnosed with terminal cancer.
“She was always someone who spoke in terms of being able to die with dignity,” said Lily. “It was something she always wanted, even before she got sick, if the day came when she could no longer live the life she wanted.”
Now, she’s losing weight. She’s short of breath. She struggles to climb stairs. She can’t bathe herself. She’s on chemotherapy to help ease symptoms.
To start the aid-in-dying process, she made her first oral request to Dr. Shavelson on May 30. If the law was still in place, she’d be eligible to get the medication on June 13. But not now.
They’ve found an apartment that’s available at the end of June, if they sign a lease quickly. Once there, they would quickly start state-mandated paperwork and track down her mother’s favorite foods, such as soup dumplings, noodles and fried rice.
“Weâ€™d pack up stuff that we need and her belongings,” such as special dietary supplements and toilet aids, said Lily. “Sheâ€™s identified what she wants to bring with her, even through the cremation process.”
“What she does not want is suffering. She always knew the prescription was an option in California and she was always comforted by that fact — that if it did get bad, she had that option,” she said. “That was something she had held onto. It was helping her stay strong.
“And now,” said Lily, “all of that has fallen apart.”
Right to die: Dying Californians turn again to Oregon