Health & Medicine

Assisted death came peacefully for SLO woman. But she faced a painful fight to fulfill her wish

Editor’s note: This is part 2 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. Click here to read Part 1.

Christine Whaley’s body was overrun by an army of melanoma tumors after five-and-a-half years battling cancer.

And there was nothing anyone could do to stop them.

The 42-year-old San Luis Obispo woman endured torturous traditional treatments and cutting-edge experimental methods, all to no avail.

By summer — with one baseball-size tumor growing from the side of her head and another threatening to block her airway — Christine was nearing the end.

But how would it come? Slow, painful and at the mercy of fate, or peaceful, planned and entirely on her terms?

When Christine made up her mind earlier this year to explore end-of-life options, she realized that California’s medical aid-in-dying law had been in effect for two years, but its reach to San Luis Obispo County was nearly nonexistent.

Instead of assistance, she encountered a San Luis Obispo County medical system unable to provide her with the care she wanted — forcing her and her husband to travel hundreds of miles to Los Angeles in search of a doctor who would prescribe end-of-life drugs.

“Go through all of that and then tell me to go through more of it,” Christine said in an interview with The Tribune in the days leading up to her death. “You can’t be one of those people to say, ‘You haven’t done enough yet.’”

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Medical aid-in-dying in SLO County

Christine was interested in medical aid-in-dying for years, but she began considering it in earnest this spring.

She first asked doctors with whom she had a relationship, but almost no physicians in the region are willing to prescribe end-of-life drugs.

Two big reasons for that are Tenet Healthcare and Dignity Health, San Luis Obispo County’s dominant medical care providers.

About 81 percent of San Luis Obispo County hospital patients were discharged from Dignity or Tenet facilities in 2016, according to a region-wide health impact report.

But neither system allows doctors to prescribe end-of-life drugs at their facilities.

Dignity, which was previously a Catholic medical system, maintains a Statement of Common Values that prohibits certain treatments and procedures, including medical aid-in-dying. The organization also doesn’t specify whether doctors can refer patients to practices that might prescribe end-of-life drugs.

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Tom Whaley looks through a few of his wife Christine’s unfinished pieces of artwork. Joe Johnston

“Though we do not participate in activities intended to hasten the end of life, we respect the personal nature of end-of-life decisions and make no obligation for patients to begin or continue life-sustaining treatment if it is not their wish to do so,” Dignity said in a statement.

When asked if Tenet has a policy on the End of Life Option Act, a spokeswoman said the healthcare system won’t participate in medical aid-in-dying. Instead physicians can refer patients to practices where it’s offered.

“After careful consideration of what is best for our operations, we determined that aid-in-dying medication will not be ordered or administered in our Tenet hospitals,” Tenet spokeswoman Krista Deans said. “However, clinicians who receive such requests in our California hospitals may assist patients with identifying participating physician practices. This may include writing prescriptions for aid-in-dying drugs to be filled elsewhere.”

Most area hospices don’t provide medical aid-in-dying, either. Wilshire Hospice in San Luis Obispo is officially neutral on the End of Life Option Act, per spokeswoman Kelly Donohue.

“Wilshire Hospice supports our patients’ clinical, emotional, physical and spiritual needs during end of life,” she said in a statement. “Wilshire Hospice does not have an opinion on the legislation known as Death with Dignity in California. Though we do not advise, prescribe or administer aid, we continue to serve our patients and their families with excellent hospice care, whatever their personal decision may be.”

With the large local hospital chains refusing to participate in California’s end-of-life law, SLO County patients’ only other option is turning to an independent physician — if they can find one.

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Christine gave Tom this painting as her final gift before her death. Joe Johnston

The struggle to obtain end-of-life drugs

Christine and her husband, Tom Whaley, hit wall after wall searching for a doctor to prescribe end-of-life medication — or even have conversations about the medical aid-in-dying process.

“Even as a patient, they won’t talk to you about it,” Tom said. “You bring it up, and everyone just shuts down. The room goes quiet. Nurses give kind of funny looks. Hospice just shuts up and won’t say anything, even though they know.”

After having no success locally, the couple decided to go to UCLA, where Christine already had been receiving some treatment. That meant lengthy trips and Los Angeles traffic, which became increasingly difficult as Christine grew sicker and sicker.

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Tom holds a childhood photo of his Christine. Joe Johnston

The three requests a patient must make for an end-of-life prescription must be made in person, which added appointments. Christine said having a local doctor willing to prescribe the medication would’ve saved the couple $2,000 and four or five days of travel.

“And I would’ve felt like my team was all here,” she said.

In May, in the middle of her medication request, Christine was hit with a new setback: A Riverside County judge ruled the state’s aid-in-dying law was unconstitutional because legislators passed it in during a special session for healthcare issues in 2015.

“I felt like, ‘What did we just do this for then?’” she said of the court ruling. For a time, Christine was “gutted,” fearing she wouldn’t be able to obtain her medication.

By June, an appeals court had stayed that ruling, and patients were again allowed to access end-of-life drugs while the legal fight continued.

Finally, on Aug. 8, Christine made her last trip to UCLA. She had the medication.

“I didn’t expect it to feel like anything,” she said of that moment. “I thought it was just a check-it-off-the-list kind of thing. But it was actually a relief.”

Prescribing end-of-life drugs

Doctors who prescribe end-of-life medications and institutions that accommodate aid-in-dying have different stances on their participation.

Dr. Andrea Angelucci of Primary Care Partners SLO is the only physician in the county who told The Tribune she has prescribed end-of-life medication and would be willing to do so in the future.

Providing aid-in-dying fits with Angelucci’s philosophy on being present for patients throughout their lives.

“When you have patients for a long time, you really have to be their advocate in all situations,” she said. “End-of-life care is a normal part of being a physician, and you should be an advocate from the time they’re born till the time they die.”

Helping her patient access end-of-life drugs required Angelucci to seek help and figure out how the law works, which can be a confusing process.

“Very slowly, I was kind of able to put together a team,” she said. “But it took a lot of persistence from my entire staff.”

Angelucci said corporations that dictate policies to their doctors hurt patients trying to access care and the physicians who want to help them.

“That is a big detriment to our community and our patients,” she said.

Dr. Neil Wenger, director of the UCLA Health Ethics Center, said his institution formed a 40-person working group to decide how to best respond to the End of Life Option Act.

“Before it started, we recognized that some UCLA patients would want to use it,” he said.

There were objections, but ultimately, an affirmative policy was developed.

UCLA also offers other forms of “stellar end-of-life care” to terminally ill adults, Wenger said, and some patients who request the drugs don’t end up using them.

“There is drop-off all along the way,” he said. “The need that they felt was going to be met by the medication was met another way.”

Patients who choose this path must meet with a clinical consultant to make sure they’re in the right frame of mind and have proper support — an extra UCLA Health policy that’s not required by the law.

“We feel that since it’s legal for California patients, it’s something a health system ought to offer,” Wenger said.

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Christine would make eclectic decorations for her and Tom’s home, including pink flamingos mounted on bamboo poles to make them taller. Joe Johnston

Christine’s last days

Christine picked Aug. 25, a Saturday, as the day she would end her life.

Her younger brother would be in town that weekend, she said, and it seemed like the best time for everyone involved.

Earlier that week, when Christine spoke with The Tribune at her San Luis Obispo home, she was resolute in her decision.

“Now it feels like it can be tidy, and it can be the way I want it to be,” she said of the planned-out date, while sitting on the couch in her living room, the right side of her head covered by a bandage. “It’s not going to happen at the wrong time, and someone’s not quite into town yet and they haven’t had a chance to say goodbye. There’s all kinds of benefits that I haven’t even thought of that I think are there.”

She sat with her legs curled underneath her near a window that overlooked her sunny yard. Laughter from children playing outside at nearby Hawthorne Elementary School filtered through a screen door and filled the room.

To Christine, the arguments against aid-in-dying — that it’s in the same category as suicide — were ridiculous.

“In this way, cancer is killing me and I’m choosing to stop breathing and stop my heart in advance,” she said matter-of-factly. “But the cancer is killing me. When it’s taken everything you enjoy out of life, metaphorically, you could say you’re dead already.”

When Christine’s battle with cancer forced her to spend more time on the couch, she set up attractions in her yard to get the attention of kids walking to school. She maintained a scarecrow dressed in different outfits, and mounted pink flamingos on bamboo poles to make them extra tall.

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The $5 bill Christine painted on the sidewalk outside her home as a whimsical trick on passers-by. Joe Johnston

Christine’s pièce de résistance was a $5 bill she painstakingly painted on the sidewalk next to her house to trick passers-by. She would watch from the window as kids tried to pick it up and were surprised to find out it wasn’t real.

When asked if she has an idea of what happens after someone dies, Christine was circumspect. It’s something she’d considered, she said, but she didn’t have a conclusion.

“I have decided it’s not up to me, and I’ll find out when I get there,” she said. “But I think that’s some of what people should take to their own hearts, too, when they’re thinking about people who are trying to figure out how to care for themselves. Let them figure it out when they get there.”

Saturday arrives

Christine planned the day of her death extensively, down to the most mundane details.

She and Tom knew the annual Diablo Canyon nuclear power plant warning siren test would sound at noon that Saturday, so they decided 10 a.m. would be the best time to take the medication.

“We talked about it, and she did not want to go with those things going off in the background,” Tom said.

The process began the night before.

Twelve hours prior to taking the drugs, Christine was required to discontinue her pain medications. She asked Tom to pick up a beef enchirito from Taco Bell for her last meal.

After Christine’s death, Tom, his two daughters and her niece released 50 to 60 orange-and-black butterflies in the backyard. Tom Whaley

Christine removed her Fentanyl patch right before going to bed, so she could sleep through any discomfort.

“I think that was a wise decision because she woke up in the morning in a lot of pain,” Tom said.

Christine woke up about 6 or 7 a.m. and took an anti-nausea medication at 9 a.m. The end-of-life drugs are so bitter, some patients could vomit and wake up — a potentially terrifying experience that the additional drugs prevent.

About 15 minutes before she took the final medication, Christine also took an anti-anxiety drug to keep her calm and slow her heart rate.

Tom, Christine, and her brother and sister-in-law gathered in the bedroom about 10 a.m.

The end-of-life drugs came in a powder with a 4-ounce vial of liquid to be mixed into a paste. They needed to be consumed within two minutes.

Tom sat behind Christine and helped prop her up while she drank the paste from a bowl in about 30 seconds. She then followed the medication with pineapple juice to help with the taste and burning sensation.

Music played in the background. Christine had prepared a playlist that ranged from darkly funny — “They’re Coming to Take Me Away” by Napoleon XIV was one of the first songs — to reflective.

“That was her sense of humor,” Tom said. “A little morbid for some people, but she was OK with that.”

She was conscious for about five minutes before the drugs began to take effect. Tom sat behind her until she fell asleep and remained with her until her death — Christine wanted him with her throughout the entire process.

“During that time, she was able to say her goodbyes to us and we said goodbye to her,” Tom said. “We got to cry together a little bit, and then she peacefully went to sleep.”

Tom moved Christine into positions that allowed the medication to work best. She eventually came to rest on her right side at a slight angle, which allowed her intestines to better process the drugs. Her breathing gradually slowed, until after about an hour, her chest rose and fell for the last time.

Shortly after, a nurse arrived to pronounce Christine dead, and Tom went for a walk while mortuary workers came to take her body.

Later, his daughters and Christine’s niece came over for a butterfly release in the backyard.

Fifty or 60 orange-and-black butterflies rose out of a box and fluttered into the air, representing Christine’s passing for the children, who weren’t in the house when she died.

“That kind of allowed them to have a little bit of a ceremony for what they might need to know that she was gone,” Tom said.

‘Life was a heartache and now I am finally free’

Christine spent years planning for her death and its aftermath.

She and Tom took a bucket list trip to Thailand in 2013, where they rode an elephant, visited temples and explored coral reefs.

In the garage, she left boxes of gifts for her 3-year-old niece, labeled and ready for birthdays stretching into her teen years.

“Just planning ahead for what life would be like without her,” Tom said. “And that people would remember her.”

Christine requested that her body be donated to science. Her death certificate lists cancer as her cause of death — something that meant a lot to Christine and Tom.

She planned her memorial service in a Google Doc, and Tom and her brother did their best to honor her wishes. It was held at Cuesta Park two weeks after her death and featured sunflowers and music from a Pandora station Christine curated.

Christine Whaley’s memorial service was held in Cuesta Park in San Luis Obispo. Per her wishes, it included sunflowers, music and memories. Courtesy of Tom Whaley

Tom still listens to it around the house sometimes.

Reflecting on the end of Christine’s life in the days and weeks afterward, Tom compared it to a ceremony honoring the death of a warrior.

“In our Western culture, we kind of don’t have ceremony anymore,” he said. “We just hang (onto) someone with machines till they’re gone.”

One song from the day of Christine’s death has stuck with him — “The Letter” by Macy Gray. It still makes him cry whenever he hears it.

Listening to the chorus, it’s easy to see why it’s so meaningful: “So long everybody / Mama don’t be sad for me / Life was a heartache and now I am finally free / Don’t know where I’m headed / Hope I see you someday soon / So long everybody / I have gone beyond the moon.”

“She had a love for life and for fun,” Tom said. “She’d never go early because she liked life too much. And it was the right time.”

Lindsey Holden: 805-781-7939, @lindseymholden

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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