Editor’s note: This is part 1 of a 2-part series on medical aid-in-dying in SLO County, focusing on the story of a terminal cancer patient from San Luis Obispo. Read Part 2 here.
Christine Whaley knew her life would come to an end five days before she died.
She was planning it for months.
“It’s a little weird,” the 42-year-old said, curled up on her living room sofa in San Luis Obispo on an August afternoon. “It’s a little different than you expect.”
For five-and-a-half years, Christine battled malignant melanoma, a disease that riddled her body with tumors. One mass formed a baseball-sized lump on the side of her skull and another in her throat made swallowing and talking difficult.
Her hair, once long and red, was now cropped close to her head, partially obscured by a massive white bandage. Her body, once healthy and athletic, was now frail.
But her resolve was as strong as ever.
Christine decided months ago that she would die on her terms in a controlled, peaceful manner — instead of suffering, the way her grandparents and so many others had.
She requested a prescription for end-of-life medication. But getting it in San Luis Obispo County was no easy feat, even though the process has been legal in California for two years.
Doctors won’t prescribe the drugs here, The Tribune discovered. Hospice agencies, who embrace the painful mission of providing comfort during a dying person’s final days, have few answers. Local hospitals will barely discuss it.
“I started realizing that this was going to become an issue, that I wasn’t going to be able to get it here,” Christine said. “I was going to have to find a way.”
Six years ago, Christine and her then-boyfriend Tom Whaley were sharing a two-bedroom house in San Luis Obispo. She worked as a bartender and massage therapist and he worked for a software company.
The couple met in 2010 through a relationship ad Christine posted on Craigslist.
Tom’s first thought of Christine was as a “well-spoken, articulate redhead” who was very athletic. Some of their initial dates revolved around running.
One day in 2012, Christine went to the doctor to have what she thought was a pimple removed from the back of her neck.
Her life would never be the same after that moment.
“I waited a while to get into the doctor because I thought it was just a pimple,” she said.
Instead, Christine learned the lump could not be easily removed and the doctor referred her to a plastic surgeon.
After the lump was taken off, a biopsy revealed it was cancerous. Doctors followed up with a second surgery to make sure the growth was completely gone, but the prognosis was already grim.
“First, I had a 30 percent chance of living 10 years if I did treatment and surgery,” Christine said. “Then it came back, so then we knew this is just going to be terminal unless something else kills me first.”
Christine underwent further tests. Doctors were concerned her cancer had spread. In December 2012, just a few months after her diagnosis, she had surgery at UCLA to remove cancer from her shoulder, neck and lymph nodes.
By the end of the year, Christine’s cancer had reached Stage 3. As the treatments became more intense, she stopped working and settled in for a fight.
Medical aid-in-dying in California
When Christine received her cancer diagnosis in 2012, medical aid-in-dying was not yet legal in California.
The practice of allowing terminally ill patients to obtain lethal doses of medication only gained traction here after Brittany Maynard, a Bay Area woman with an incurable brain tumor, began a personal crusade chronicled by national news outlets, including CNN.
With no path forward in her home state, Maynard moved to Oregon, where medical aid-in-dying was legalized in 1997, to obtain the drugs she need to end her life. She died in November 2014 at age 29, according to a National Public Radio story.
Nearly a year later, in October 2015, Gov. Jerry Brown signed the state’s End of Life Option Act, making medical aid-in-dying legal in California. The law took effect on June 9, 2016.
The bill was co-authored by Sen. Bill Monning, D-Carmel, who said terminally ill patients’ access to end-of-life drugs is a fundamental human right.
“We see the aid-in-dying as self-determination to end pain and suffering,” he told The Tribune.
California is one of only a handful of states that allows doctors to prescribe end-of-life drugs, along with Oregon, Colorado, Washington, Hawaii, Vermont and Washington, D.C., according to advocacy group Death with Dignity.
To be eligible, patients must be diagnosed with a terminal illness and have a life expectancy of six months or less. They also must meet a lengthy list of requirements that can include multiple requests to their doctor (both verbally and in writing), a second doctor’s approval, and mental health evaluations.
Crucially, patients must be physically able to take the drugs themselves. Caretakers cannot administer.
The law allows doctors and healthcare systems to decide whether they will participate in medical aid-in-dying, and organizations can prohibit their employees from taking part.
“The challenge faced by some patients — it’s rooted in the protections of the law,” Monning said.
During 2017, the first full year the policy was in effect, 577 patients received prescriptions for end of life drugs, according to the California Department of Public Health.
After receiving their prescriptions, 363 patients took the drugs and died. Eighty-six patients did not take the medication and subsequently died of their illnesses, and the remaining 128 have undetermined outcomes.
Like Christine, most patients who died after taking their end-of-life medications suffered from malignant cancer. Unlike Christine, most patients were older than 60 at the time of their death — only about 10 percent were younger.
More than 80 percent of patients who consumed end-of-life drugs were enrolled in hospice or palliative care when they died.
After her diagnosis, Christine spent years fighting her melanoma, using any treatment she could find.
She tried immunotherapy — pushing the body’s immune system to attack the cancer cells. She also tried experimental methods, hoping to cure herself and help advance care for others.
Some of Christine’s treatments took place at UCLA while she coordinated with a primary oncologist in San Luis Obispo. Others required her to take a bus from SLO down to Marian Regional Medical Center in Santa Maria, which made for uncomfortable trips.
Her early treatments weren’t as intense as the later ones — she kept her long, wavy hair and continued to look healthy. Sometimes, she would wake up feeling a morning sickness-like nausea, but was then able to go about her day.
“There’s a lot of advancement right now, so we kept doing the latest new experiment,” Tom said. “She kept volunteering for insane experiments. Those kept keeping her alive. It would work for like a year and then it would not work anymore. It would progress and go somewhere else.”
About three years in, the disease took a significant turn when Christine suffered a seizure.
Doctors realized the cancer had spread to her brain. She had surgery to remove the tumor at Sierra Vista Regional Medical Center, but small masses kept coming back.
Christine tried rounds of Gamma Knife treatments — an intense but less-invasive procedure that involved attaching a metal cage to her head and shooting the tumors with radiation.
“Gamma Knife is crazy hard to watch,” Tom said. “They literally put her head into a cage by screwing it to her head with drills like you’d see construction workers use and then connect the cage to the Gamma Knife machine so that she (could not) move her head.”
But the cancer returned on the outside of her skull, and doctors tried to remove the tumor with surgery and finish it off with radiation.
But Christine’s skin didn’t grow back properly, and for six months, she had a wound vacuum uncomfortably suctioned to her head to promote healing.
As a last resort, doctors tried chemotherapy, but by the spring and early summer they were out of options.
“Somewhere in May or June the local doctors and UCLA ran out of ideas and told us there was nothing more they could do for her,” Tom said in an email.
The cancer was growing inside and outside her brain and in her throat. She temporarily lost the ability to talk and had trouble controlling her throat muscles.
Christine worried the tumor in her throat might suffocate her, or that she could drown from fluid filling her lungs.
A controversial policy
Medical aid-in-dying is a controversial practice.
The Life Legal Defense Foundation and the American Academy of Medical Ethics say the California law may push patients to end their lives instead of pursuing treatment and encourages suicide, especially among vulnerable patients who might feel they’re a burden to their families and caretakers.
The groups filed a lawsuit opposing the End of Life Option Act the day it took effect, and in May, a Riverside County judge ruled the law was unconstitutional because legislators passed it during a special session for healthcare issues.
But an appeals court stayed that ruling in June, allowing patients to access end-of-life drugs while the court case continues, according to The Los Angeles Times.
Some doctors see medical aid-in-dying as an important tool for patients, while others are philosophically opposed to it.
Dr. Bob Uslander runs Integrated Medical Care, a palliative care practice in San Diego. He’s been writing medical aid-in-dying prescriptions for patients almost since the End of Life Option Act went into effect.
“The first few patients who contacted me had tried, like, 15 different doctors,” he said.
Uslander estimates he’s helped several dozen patients get prescriptions since the law passed. Not all of them have ultimately taken the drugs.
Uslander doesn’t see medical aid-in-dying as a replacement for end-of-life care, but as one aspect of it. His priority is to make patients’ final phase of life as comfortable as possible, which could involve therapies, medical treatment or home nursing.
“If a patient needs orthopedic surgery, then the doctor’s going to find an orthopedic surgeon for them,” Uslander said of aid-in-dying. “This is kind of becoming a specialty in medicine.”
But Dr. David Palchak, owner of PCR Oncology in Arroyo Grande, sees medical aid-in-dying as unnecessary with proper palliative care.
Palchak, who worked as a hospice medical director for 14 years, said there are alternatives to prescribing end-of-life medication for patients who find being awake painful.
One such option is palliative sedation, which involves giving patients medications that render them unconscious, sometimes for days, until their deaths. Although palliative sedation is meant to relieve pain, it’s typically used only when patients are close to death.
“The dilemma, morally, is that many people think it is wrong to kill,” he said.
Palchak said he would refer patients who ask him about end-of-life drugs to UCLA, where doctors are willing to prescribe the medication.
Both Palchak and Uslander said doctors — who typically focus on keeping people alive and may not witness much death — sometimes aren’t comfortable discussing the end of their patients’ lives.
“I think physicians, as a group, are not as good as we should be at talking about death and dying,” Palchak said.
Choosing medical aid-in-dying
Christine Whaley fought to live. But by the beginning of this year, she had decided that if death was inevitable, she didn’t want it to come the same way it did for her grandparents. Both died of cancer, and Christine watched them suffer in pain at the end of their lives.
Years before, Christine had heard about Brittany Maynard and her end-of-life story.
“I realized that, oh, if this is an option in my area now, then I want to do it,” she said. “That’s how I want to do it. I don’t want to go the same way my grandparents did.”
Family members, including her husband and younger brother, were supportive.
“I could see that she was slowly deteriorating and facing her own mortality,” Tom Whaley said, “and knowing that it was going to get so painful that I think she needed to take control of herself and her own choices and her own destiny.”
Christine had reached a decision, so she and Tom began exploring her options.
They would quickly realize, however, that charting a peaceful path to death is not easy in San Luis Obispo County.
In fact, it’s nearly impossible.
Part 2: What do you do when you have a terminal illness and no one will help you die the way you want to? The conclusion of Christine Whaley’s story. Read the second installment here.
How we reported this story
This story was inspired by a Viewpoint Christine Whaley wrote in August about SLO County residents’ lack of access to medical aid-in-dying services. After it published, Tribune reporter Lindsey Holden reached out to her to ask about sharing her experiences in a larger story.
Christine planned to take her end-of-life medication just days later. Lindsey and Tribune photographer Joe Johnston were able to speak with her and take video and photos on Monday, Aug. 20. She insisted on clearly showing her head bandages and the full extent of her illness — hoping the images would have an impact on readers.
As planned, Christine took her medication and died on Saturday, Aug. 25.
Over the course of six weeks, Lindsey spoke with or emailed more than 20 people for this story, including medical professionals, elected officials, advocacy groups and healthcare system representatives. She also spent many hours doing research on California’s End of Life Option Act and learning about other patients’ experiences with the law.
Although medical aid-in-dying has been legal in California for two years, it’s clear many doctors don’t know a lot about the process and how they can best help patients who ask about it. If this is a problem in San Luis Obispo County — a rural community located between San Francisco and Los Angeles — it’s likely also a challenge for many more isolated areas of the state and an issue that needs to be addressed more uniformly if it’s to be a real option for terminal patients who face making a decision about how and when their lives should end.
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