Die of omission: California lawsuit accuses physicians of misleading terminal woman who sought aid-in-dying medication
Bay Area grandmother supported passage of law she was unable to access
As her surviving daughter remembers it, Judy Dale pestered everyone in the ICU with her dying wish.
Diagnosed in May of last year with incurable stage 4 colorectal cancer, which had metastisized to her liver and lungs, the 76-year-old Bay Area woman told anyone who entered the orbit of UCSF Medical Center’s intensive care unit that she wanted what her own mother never got—a medically-assisted death, free of pain, suffering or anxiety.
“My mother was so adamant about this that literally every person who walked in here, she said, ’Make sure this is on the record,’” recalled Catherine Dale, “whether someone was just changing the linens.”
Like just about every adult child of an aging parent, Catherine shrugged off her mom’s worrying. After all, everything was falling swiftly into place. A month after Judy’s diagnosis, California became the seventh state with a working aid-in-dying law for terminal patients. Judy qualified for it, her hospital had already been preparing to implement it and, according to a complaint filed last month in San Francisco Superior Court, her physicians and social workers repeatedly reassured her that they would participate.
So what could go wrong?
Signed into law in the fall of 2015, a year before it took effect, California’s End of Life Option Act provides dying adults access to lethal drugs if they manage to navigate several procedural requirements in the limited time they have left.
Requests must be made in person and in writing, and hospitals and their doctors have to be willing to participate. Anecdotally, at least, that’s proved the largest hurdle to patient access so far.
Over the law’s first six months, 191 of the 258 individuals who started the end-of-life process received written prescriptions for aid-in-dying medication, according to the California Department of Public Health. That means 26 percent of patients were unsuccessful for reasons that state health officials aren’t collecting.
But patients’ rights advocates and the surviving relatives of terminal patients have told SN&R the process can be impossible to navigate, with dying individuals and their loved ones spending their final days frantically searching for a doctor willing to conduct one of two legally required consultations that stand in the way of relief. That’s what happened with my mother. (Read “Killing Mom,” SN&R Feature Story, June 15, 2017.)
Catherine didn’t think her mother would have that problem. UCSF’s medical staff, she said, had given the family every indication that it would assist Judy’s request for a medically induced death. But that August, two months after her diagnosis, as Judy was preparing to check out of the hospital and enter palliative care at home, Catherine says, a hospice social worker mentioned in passing that UCSF physicians were not participating under the law.
“Nobody wanted to be the one to tell us,” Catherine said. “That’s how we found out.”
During her final oncology appointment, Judy told Dr. Chloe Atreya she felt betrayed, Catherine says.
“My mom was so fit to be tied,” Catherine recalled. “She said, ’Chloe, you lied to me. You lied to me.’ She said, ’Well, I just didn’t tell you.’ And my mom, her most famous quote, she kept saying, ’That was the biggest lie of all—the lie of omission.”
The family’s ordeal has prompted what the End of Life Liberty Project says is the first patient-driven lawsuit to contend with California’s aid-in-dying law. (A separate lawsuit is attempting to rewind the law.)
For Kathryn L. Tucker, family spokeswoman and executive director of the End of Life Liberty Project, the lawsuit isn’t about forcing doctors to participate in the law against their will. It’s about making sure they’re transparent about their stance.
“The duty of the clinician to be clear early on is essential,” said Tucker, whose organization has also challenged New York’s assisted death prohibition. “This case isn’t about contesting the provision to opt out.”
In demanding a jury trial, the 17-page complaint, from Stebner and Associates, alleges elder abuse or neglect, negligent infliction of emotional distress, misrepresentation or fraud, and other causes worthy of unspecified damages.
UCSF Medical Center declined to comment on the pending lawsuit. But the hospital issued a general statement noting that it was one of the first California hospitals to develop protocols for implementing the state’s aid-in-dying law, but that it “also respects clinicians’ rights not to participate.”
“In these cases, the patient’s doctor will speak with the patient about other ways the doctor can provide support during his/her terminal illness,” the statement adds.
Catherine says the hospital didn’t provide any such support to her family.
At home, Catherine and her sister split their time caring for their mom and blindly searching the internet for another doctor to step in. Every morning, Catherine says, her mother asked if she had found someone to grant her dying wish.
“My mom would wake up; first thing she’d ask is how many more days until we found someone,” Catherine said. “Why did they do this to her? ‘Why can’t you find answers? Why won’t they tell us [anything]?’ It wasn’t where her energies were supposed to go in the end.”
One day, Catherine stumbled across a San Jose Mercury News article online, with the name of a doctor she contacted. The doctor arrived the next day to conduct a consultation. That started the required 15-day countdown between when a request is made and when the lethal medication can be prescribed.
“My mom died on Day 14, the day before she could take the medicine,” Catherine said.
During her healthier years, Judith donated money to and was a vocal supporter of end-of-life autonomy, say her daughter and the attorneys representing her estate. Having cared for her own mother as she succumbed to cancer, Judy intimately knew the ravages she wanted to avoid, the legal complaint asserts.
“Judy’s final weeks were brutal,” the complaint states. “She did not want to die in a diaper, bleeding from her rectum and urinary tract, in pain unless sedated to the point she was too confused to say goodbye to her family. But this horrific death was forced upon her by DEFENDANTS’ actions.”
Judy Dale died on September 13, 2016. Her husband followed some five months later. Pneumonia and low blood pressure were the official causes of his death.
“After my mom, he just kind of gave up,” Catherine said.
On the phone from her garden in Santa Rosa, Catherine takes her frustration with the hospital and her grief over her parents’ successive deaths, and aims it all inward. She asks herself why she couldn’t find that good doctor’s name a few days earlier.
“I still feel like I let my mom down,” she said.