‘We thought we had a great plan until we didn’t’: A grieving Santa Rosa man is left to wonder how California’s death with dignity law failed his wife

She’d had enough

Jeanne was diagnosed with endometrial cancer in 2016.

She had surgery and underwent chemotherapy. She lost her hair, but she beat the cancer back.

And all the while, she continued to work out, play fierce tennis and scuba dive all over the world with her beloved gang of female diving friends who lovingly called themselves the “Old Broads Dive Club.”

But the cancer returned. In 2019 she had more surgery. There was more chemotherapy. Jeanne endured but the cancer kept coming.

By this spring, Jeanne had had enough.

On April 20, she wrote an open letter to friends and loved ones from what she described as “cancerland.”

She had decided to stop taking any more aggressive drugs. She felt they would not give her the quality of life she wanted.

She told her friends she had signed up for hospice the prior day, that palliative care was something she firmly believed in.

She was also clear with her husband: She wanted to take advantage of California’s End of Life Option Act.

But despite her work with hospice and understanding of the law, there was confusion.

A decadeslong patient with Kaiser Permanente, Jeanne learned that all Kaiser’s hospice care was contracted to Providence St. Joseph Health, a nonprofit Catholic health system that operates Providence Santa Rosa Memorial, Petaluma Valley and Healdsburg hospitals.

Jeanne assumed her end-of-life medication request would go through hospice, but Providence, a Catholic hospital, does not participate in California’s End of Life Option Act law.

California’s law allows providers to opt out, but they are required to inform patients that they do not participate.

So while Osterland’s hospice and palliative care continued to be provided by Providence, her End of Life Option Act request needed to be made through Kaiser.

In the best of circumstances, the two programs work with each other, with Providence providing in-home support and pain care, and Kaiser overseeing the end of life medication request.

But Bill said that partnership between the two providers was not clear, nor was it clear where he should turn when things started to go downhill.

And the trouble started almost immediately.

Bill assumed that after Jeanne spoke on the phone on May 9 with the second of two Kaiser doctors who cleared her to receive the medication, those medications would be accessible immediately, either by delivery or for him to pick up.

“On May 9th we had the five minute, eight minute meeting and we thought, ‘Alright, that afternoon they show up,’” he said.

“Starting on the 10th we started asking, ‘Where are they?’” he said.

“I didn’t think there would be a delay in getting them,” he said. “I thought, once you ask they are yours. There is no delay.”

Answers were hard to come by.

Bill came to learn that the prescription was to be filled not in a local Kaiser pharmacy as he was used to, but by a pharmacy in the South Bay. Delivery date? May 17.

In the meantime, Jeanne’s health was deteriorating quickly. Bill worked to both care for his wife, but also find answers about how to speed up the delivery.

“It’s hard to get a hold of anyone at Kaiser,” he said.

He called people he knew personally, people he knew socially, looking for a way into Kaiser’s system, a way to speed up the process. As the hours and days went by, he felt increasingly helpless.

“I would have gladly paid the extra money to have them Fed Ex-ed or I would have gone to pick them up,” he said.

As Jeanne’s health declined, both Osterlands knew time was running out. The law makes clear that a patient using the End of Life Option Act must be able to ingest the four medications without assistance.

It was unclear how long Jeanne would be able to carry it out herself. She understood this race against time.

“She was clearly depressed,” Bill Osterland said. “All the emotions and feelings that could have been avoided. It will stick with me for the rest of my life.”

In the end, Jeanne Osterland’s death was peaceful, Bill said. But the days leading up to it were not.

There was needless anxiety and suffering. The very things Jeanne and Bill had hoped to avoid.

Bill credits the care his wife received from the Providence hospice caregivers.

“At the end, she was highly sedated,” he said. “The very last hours, Jeanne wasn’t suffering, but there was a lot of time before that where we thought ‘What did we do wrong?’ We thought we had this, but again, Kaiser is not set up to call somebody and get an answer.”

Kaiser Permanente offered two separate written responses to questions regarding the Osterlands’ experience. Company officials declined multiple interview requests.

“Once evaluated by at least two physicians, the patient and Kaiser Permanente agree on a delivery date for the medications as occurred in Mrs. Osterland’s case. The medications require approximately a week’s advance turnaround time, as they are made to order by a specialty compounding pharmacy in the East Bay chosen for its expertise and accredited in this area,” the statement attributed to Tarek Salaway, senior vice president and area manager, Kaiser Permanente Marin and Sonoma, says.

“Each patient is assigned to a Kaiser Permanente End of Life Option Program patient coordinator who manages the process for and with the patient and is available to answer questions during business hours.”

“As is our practice, we review these services as well as services rendered through our hospice partners to make improvements,” the statement reads.

But if Jeanne had a patient coordinator, it wasn’t clear to her or Bill, he said. When he and Jeanne needed help, there was no one to call.

And if these professed safeguards were in place and communication was at the fore of Kaiser’s policy, why did his questions go unanswered, why were his requests for speed unheard, Osterland wonders.

And the line in Kaiser’s response that Osterland, in his effort to untangle what happened, said is particularly galling: “We have reached out to Mr. Osterland, and will continue to do so, to offer our support and the information he is seeking.”

“That’s a lie,” he said.

A lack of education

California requires that physicians report to the state Department of Public Health both requests for end of life medications and figures on patients who actually took the medication.

From the time California’s End of Life Option Act went into effect June 9, 2016, and Dec. 31, 2021, 2,422 patients have used the medication to hasten their death.

In 2021, 486 hastened their deaths through aid-in-dying drugs in California.

But while California’s population of 39.2 million is nearly nine times the size of Oregon’s, it had only twice the number of prescriptions issued in 2021. The relatively small number of people who use California’s law has proven a puzzle for some.

In some ways, it counters the long held belief that the law would be abused and there would be a rush of deaths.

But for others, the small number, even six years into the life of the law, could point to a lack of education about how it works, how to access it and who is eligible.

The criteria to use the End of Life Option Act is relatively straightforward: Patients must be terminally ill with less than six months to live, must be competent to make the decision and must be able to carry out ingesting the medications themselves.

And there is also concern that the law’s liberal opt-out clause allows providers to either dissuade patients from making that choice or keep silent on the totality of their options.

“I’m disappointed that more people are opting out, but you make concessions in legislation because you have to sometimes, not because you want to,” said Assembly member Jim Wood, D-Santa Rosa, a principal co-author on SB380, which altered California’s original law and reduced the wait time between doctor approvals from 15 days to two starting Jan. 1.

And Wood believes that, for many, the topic remains difficult to broach no matter their stance on hastened death.

“It’s not a top of mind issue,” he said. “Maybe we need a (public service announcement) or campaign to let people know about this. Maybe that is something that needs to happen every few years.”

‘Princess warrior’

At the celebration of life for Jeanne Osterland on June 8, the lineup of speakers spoke volumes about her: Her trainer, her decadeslong scuba companion, her tennis partner.

She met Bill while skiing. One of their early dates involved a competitive footrace.

Friends used words like competitive, joyous, tenacious, brave and “princess warrior” to describe her.

Osterland’s trainer, Nan Hall, recalled that on Osterland’s 71st birthday, she went toe to toe with athletes decades her junior — and dropped the hammer on all of them.

“She won every damn challenge,” she said. “She was the real deal. She wasn’t afraid of putting in the hard work to be who she wanted to be.”

Brian Williams, a frequent tennis partner and competitor, said Jeanne always fought to the last point.

He quoted tennis great Rafael Nadal.

“He said ‘Maybe I like fighting more than winning.’ That was Jeanne,” Williams said.

Jeanne Osterland did fight. But when on April 20 she announced to friends and family that she was changing tactics, she assumed she was taking control of this final point.

But in a system that is supposed to give people choice and control, Jeanne Osterland got neither.

And now her husband is left to grieve and wonder what went wrong.

You can reach Staff Columnist Kerry Benefield at 707-526-8671 or kerry.benefield@pressdemocrat.com. On Twitter @benefield.