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Death With Dignity: Brittany Maynard's husband carries on the right-to-die fight

Alamo resident Dan Diaz found himself in the international spotlight last year when he and his terminally ill wife moved to Oregon to end her suffering. Now, he’s on a mission to ensure all Americans don’t have to leave home to die peacefully.


Published:

By Marc Olivier Le Blanc

It’s early morning, and Dan Diaz rises from bed in his Alamo home. He greets his dogs, a cheeky Great Dane and a nosy older beagle, and fills their bowls with kibble. Then, he grabs his laptop and sits down at the dining room table.

He checks his e-mail: He needs to respond to an op-ed piece. A legislator has good news. His heart sinks when he opens a message from a dear friend battling cancer: things have taken a turn, and she only has a few weeks left. Dan rolls up the sleeves of his work shirt and starts typing, the click of his keyboard breaking the silence in the house.

On November 1, 2014, Dan’s wife, Brittany Maynard, took a lethal dose of sleeping pills prescribed to her by a doctor in Oregon. The 29-year-old was suffering from an aggressive brain tumor and, had she not been able to end her own life, could have died in excruciating pain—paralyzed, consumed by seizures, and without cognitive function or eyesight. The thought had terrified her.

The couple moved to Oregon last summer to take advantage of its Death With Dignity law, which lets terminally ill patients with a prognosis of six months to live end their own lives, on their own terms. Brittany went public with her decision in videos that sparked debate around the country—especially in California, where no such law existed at the time—about end-of-life choices for people whose quality of life is deteriorating rapidly from disease.


 

“Brittany and I drove 12 hours so she could die peacefully,” Dan says. “And she did.”

After Brittany’s death, Dan left his day job to pursue advocacy work full time, diving into the fight to get an aid-in-dying law passed in California. It’s a cause he believes in after watching Brittany fight to live but then choose to end her own suffering. It’s also a promise he made to her in her final days.

“Nobody should have to leave their home, their medical team, their friends, and their family after being told they have six months to live,” Dan says, sitting in the Alamo living room where he proposed to Brittany just a little more than three years ago. “Nobody should have to go through what Brittany went through.”

 

Courtesy of thebrittanyfund.org

Dan and Brittany’s first date was in 2007 at an Italian restaurant in Rockridge. At 22, she struck him as vivacious, sharp, and personable. Dan, 35 at the time, was a hard-working and family-oriented bachelor looking for The One.

“She was stunning and funny, and she had a personality that immediately engaged you,” he says. “Early on, I had thought to myself, this could be the girl for me.”

They were both introverts, but together, conversation flowed. Before long, Dan and Brittany were spending weekends together in Wine Country, or sticking around Oakland, where they both lived at the time, to browse the farmers market, get sushi, or hike in the surrounding hills.

The couple bought a home in Alamo in the summer of 2012, near Dan’s job in San Ramon, and he proposed on the day they closed on the house. Their Wine Country wedding that September was everything Brittany wanted—romantic, somewhat traditional, and fun, with incredible food. The newlyweds planned to start trying for kids and had a long list of home-renovation projects.

But six months later, Brittany’s head started to hurt. The headaches were unbearable, especially while she was lying down. Dan found himself waking up in the middle of the night to find her in the bathroom, vomiting.

Her neurologist thought her hormones might be causing the headaches. Brittany was given needle pens to stick into her leg when the pain crept up; she was also told that if she was to get pregnant, the episodes might stop.

The pain subsided as the year progressed but then flared up again around the holidays. On New Year’s Eve, she and Dan headed to Wine Country for a getaway. As they ate lunch, Brittany started to feel sick. Then, she started to shake. Back at their hotel, she took a bath but then began vomiting.

They went to the Healdsburg emergency room, and Brittany was transported by ambulance to John Muir Medical Center in Walnut Creek for an MRI. Dan followed behind in his car, fearing the worst, and watched fireworks explode over the Bay at midnight.

“All the anxiety—all the nerves—started that day for me,” Dan says, “and it kind of hasn’t stopped ever since.”

At John Muir, in the early hours of January 1, Brittany was placed on brain-injury protocol: She needed to be completely free from stimulation to alleviate her pain. The next morning, a doctor hesitated as he delivered the news: Brittany had a massive tumor in her head, one of the largest some of the physicians had ever seen. She would have to be transferred to UCSF Medical Center, where a team of doctors would study her scans.

“Nowhere along the way did anybody say, ‘We can cure this,’ ” Dan says. “At first, they were saying she might live three years, five years, 10 years. They said, ‘Patients don’t walk away from this. You’re going to die from this.’ ”

Brittany continually pressed doctors for more information, especially when she felt they were holding back. There was little Dan could do, other than support her.

On January 10, surgeons removed as much of the tumor as possible but could only safely get about 30 percent. Brittany was then sent home to Alamo to go about her life. So she did: working out, grocery shopping, and walking the dogs on days she felt well. She also spent a lot of time on the Internet, researching her disease and planning bucket-list trips.

At one point, Dan and Brittany watched How to Die in Oregon, a documentary that captures the final days of terminally ill people who have been given a life-ending prescription. Brittany kept the option in mind as a last resort, and was crushed to learn that it was illegal in her native California.

In March, she returned to UCSF for another scan. Her tumor was growing back—more aggressively than ever—and she received a prognosis of six months to live. Doctors encouraged her to start treatment immediately but couldn’t guarantee she’d live significantly longer, and the side effects would be severe: Chemotherapy would make her sick and unable to travel; radiation would take away her brain function and leave burns on her scalp.

If Brittany declined treatment, as some brain cancer patients do—and as she ultimately decided to do—she worried end-of-life pain management wouldn’t be enough. Because the rest of her body was young and healthy, she could be under palliative sedation for weeks—as opposed to days—while she suffered seizures and strokes, and eventually died of dehydration and starvation, possibly while able to hear her loved ones in the room.

None of this was how Brittany wanted to die. When they got home, she told Dan, “We’re moving to Oregon.” She laid out what that would entail—establishing residency, finding a new medical team, and gathering the forms necessary to apply to the state’s Death With Dignity program.

“I nodded my head and said, ‘Yes, that’s exactly what we’re going to do,’ ” Dan says. “It was just me supporting the person I love. What could I offer other than my support?”

 

That summer, amid the chaos of cancer, the couple packed a U-Haul, locked up their Alamo house, and headed north to Oregon. Family and friends visited, and Brittany went on as many trips to national parks as she could. While she and Dan were visiting Yellowstone, she received the e-mail saying she had been approved for the life-ending medication. The news was bittersweet.

“That was an emotional day,” Dan says. “It was a day when Brittany recognized that she had taken back a certain amount of control from the tumor—this horrible thing inside her skull that has the potential to torture her. What went away was
this fear of dying a horrific death. There was an immense feeling of relief.”

After acquiring the medication, the couple put it in a cupboard and continued to fight the disease, tirelessly researching the Internet for treatment options in places as far away as Australia, and corresponding with doctors who said they couldn’t help.

Some mornings in Oregon were better than others. On the best days, Dan and Brittany would head to the waterfront, take a hike near their house, or try a new restaurant. On bad days, they stayed at home on the couch watching Netflix. On the worst day, Brittany ended up in the emergency room after a seizure, and she couldn’t speak or say Dan’s name for hours.

As summer turned to fall, Brittany felt less like herself each week. Her hearing became unbearably sensitive, requiring her to wear earplugs everywhere she went. She started to fall on hikes and around the house, and her medication caused her to gain weight. She also developed insomnia: Dan often woke up in the middle of the night to find her playing Scrabble on her Kindle or scrolling her news feed. He’d pop downstairs to reheat the heating pad she wore around her neck—one of the only things that brought her relief.

As his wife suffered, it became harder for Dan to sleep, too.

“The wheels were just spinning—and the reality was just replaying in my head,” he says. “You’re trying to solve this, and that’s the hardest part. There wasn’t a solution or an answer.”

After making it past their second wedding anniversary in September, Brittany hoped to live until November 1, a few days after Dan’s birthday.

“We knew it would be time when the bad days would start to string together—days that she wasn’t living through, but suffering through,” Dan says. “She recognized that maybe she’d miss 30 days of life, but they’d be 30 days of horrific pain.”

 

"When we got back to the house, Brittany knew it was her time. It was OK for her to say good-bye. She was OK avoiding any more of the torture the tumor had inflicted on her.”

By Marc Olivier Le Blanc

The more the couple learned about the realities of brain cancer, the more passionate they became about the right for the terminally ill to choose how and when they die—without having to leave the comforts of home.

In September, Brittany decided to share her story with the public via Compassion and Choices, the nation’s largest aid-in-dying advocacy group. She also did an interview with People magazine.

The first Compassion and Choices video appeared online on October 6, while Brittany and Dan were on a trip at Hood River in Oregon. It quickly went viral, garnering more than 10 million views. In it, Brittany talks about how she felt as she received her prognosis, her thoughts on what matters most, and her right to die peacefully in her bedroom. Texts, e-mails, and phone calls flooded in from family and friends, saying they saw the couple on TV and the Internet.

“We were like, ‘Holy shit, what do we do with this now?’ ” Dan says. “She decided to give the media two weeks and allow them to be part of our lives. Then, she said we’d shut it down and go back to family time.”

A second video went live a few weeks later. In it, Brittany tells of her goal to live to November 1. She also divulges her fears—most significantly, her concern about waiting too long and becoming too sick to self-administer the life-ending medication, which is one of the legal stipulations.

The videos evoked a major response and not just from those deeply seated on both sides of the aid-in-dying debate. Comments skyrocketed into the thousands on stories posted by major news networks. People with terminal illnesses published “open letter” essays and YouTube videos directed at Brittany, expressing their support or begging her to change her mind. Seemingly overnight, Brittany became the poster child for the debate, and cable news networks aired heated discussions about her decision and general life-ending policies.

Much of the feedback Brittany received was encouraging. But the criticism stung.

One of her critics was Dr. Ira Byock, a palliative care physician and frequent media commentator, who said Compassion and Choices and the media were exploiting her.

“He said reckless and hurtful things,” Dan says, his gentle tone becoming sharper. “His day is coming: I will have a conversation with him.”

Two weeks after the media storm began, the couple retreated from the public eye as planned—but there was no quieting the conversation they had sparked.

 

November 1 started with a seizure. Then, Brittany walked the dogs with Dan and a few loved ones.

“When we got back to the house, Brittany knew it was her time,” Dan says, his voice becoming quieter. “It was OK for her to say good-bye. She was OK avoiding any more of the torture the tumor had inflicted on her in the previous weeks—and she knew the worsening effects that were coming.”

Brittany went upstairs to her bedroom while a family member emptied 100 sleeping pill capsules into a glass and mixed them with water. Brittany sat in bed surrounded by her “circle of love” and said a few words to each person. It was a devastating moment for her mom, Debbie Ziegler, who had to say good-bye to her only child.

Brittany also posted a message to her friends and followers on Facebook.

“Good-bye to all my dear friends and family that I love,” she wrote. “Today is the day I have chosen to pass away with dignity in the face of my terminal illness, this terrible disease that has taken so much from me . . . but would have taken so much more.”

Dan laid next to her as she drank the medication and drifted off, “just like I’ve watched her fall asleep a million times,” he says. Within a half hour, her breathing slowed to a stop.

“I stayed there. Her friends came in and out, but I was just there,” Dan says. “Even after she died, that’s still the person I love. It was comforting for me to be there with Brittany.”

Because Brittany’s goal to live to November 1 was highly publicized, the media immediately started pressing for details. So the next day, Dan released a statement confirming Brittany had died and offering her obituary, most of which she had written. Shortly after that, he packed the U-Haul, loaded up the dogs, and drove home to Alamo. Next to him were Brittany’s ashes stored in a small box.

 

In the weeks following Brittany’s death, Dan and his family requested privacy from the media. But bloggers, aid-in-dying opponents, and members of the general public took to the Internet to weigh in. Some of the loudest criticism came from those in the palliative care, disability advocacy, and Catholic communities, who have long worried about the medical, social, and moral implications of ending one’s life.

One of the most highly publicized responses was from the Vatican. Its top ethicist condemned Brittany’s decision, saying it was suicide and that there is no dignity in ending one’s life. Brittany’s mom published a sharp rebuttal, saying the Vatican’s judgment was a “slap in the face” for a family in grief.

Dan struggled to understand the opposition’s point of view. But after seeing how desperately his wife wanted to live and how terrified she was to die in pain, he believed it was her right to choose how she passed—and Dan felt she made the right choice. The criticism fueled his desire to make good on the promise he made Brittany: to make sure a Death With Dignity law is passed in California so others don’t have to move to another state to end their lives when pain becomes unbearable.

Dan connected with California senators Bill Monning and Lois Wolk, and three months after Brittany’s death, they introduced SB 128, also known as the End of Life Option Act. The legislation, modeled after Oregon’s Death With Dignity law that took effect in 1997, would allow terminally ill, mentally competent patients to seek aid-in-dying medication when certain criteria are met (see below).

It was the first time in nearly a decade that the issue had been addressed by the California Senate. The Aid-in-Dying act was narrowly defeated by voters in 1992, and the California Compassionate Choices Act was shelved in 2007.

In the months after Brittany’s death, end-of-life bills were also introduced in more than 20 states, some of which had never before broached the issue.

Dan and Ziegler spoke at the podium during the announcement of SB 128, adding a human element to an otherwise formal press conference.

“I thank you with my mother’s heart for doing this,” Ziegler said to the senators. Then, she addressed the crowd: “Dying on one’s own terms is something I don’t think we think about a lot until we are faced with something in our own family—a debilitating, cruel disease like brain cancer and a terminal prognosis. . . . But when it does happen to your family, you see that this is a basic human right.”

Groups opposed to the aid-in-dying bill kicked into high gear. One of the Bay Area’s most outspoken lobbyists regarding SB 128 is Marg Hall, a volunteer for Sacramento-based Californians Against Assisted Suicide as well as CUIDO, a Bay Area grassroots disability advocacy organization.

Hall—who has a disability and is married to a palliative care nurse—says she worries that legalizing aid-in-dying medication will undermine efforts to see widespread palliative care incorporated into the health-care system. She is also concerned that people with cognitive or sensory impairments will be persuaded to die prematurely rather than seek treatment in order to cut costs.

“Like many other marginalized people, people with disabilities face a lot of obstacles in the health-care system,” Hall says. “Many of us fall through the cracks on a daily basis: This crack could be lethal.”

Still, SB 128 looked promising, in large part due to the awareness brought to it by Brittany’s story. In May, the California Medical Association, which had always opposed aid-in-dying laws, became the first state medical association to change its stance to one of neutrality, saying the decision should be left to a patient and the patient’s physician. Two weeks later, the bill passed the state senate with a 23 to 15 vote.

But over the summer, it stalled when it was pulled from the California State Assembly Committee on Health’s agenda due to concerns that it wouldn’t have enough support to pass.

“I’m uncomfortable based on the experiences of my mom, who died of a terminal illness,” said Assemblywoman Lorena Gonzalez, a Democrat from San Diego. “I’m uncomfortable based on the impact this will have on poor people in a health-care system that cuts corners in the name of costs.”

Advocates for aid-in-dying laws, however, refused to give up, and saw a second chance to get an aid-in-dying bill passed when Governor Jerry Brown called a special legislative session to consider transportation and health-care issues. Hoping it would appeal to the different set of lawmakers, a few assembly members introduced a new End of Life Option Act, called ABX2-15, in mid-August.

It appears the tactic worked: California’s first official Death With Dignity law passed both the California Assembly and Senate in early September. The last hurdle is the governor’s office. (At press time, Governor Brown refrained from commenting on the legislation.) [NOTE: The governor signed the bill into law on October 5.]

Even so, the bill is too late for Brittany and many other terminally ill Californians, including Jennifer Glass, a San Mateo resident and staunch aid-in-dying advocate who passed away in mid-August, days before SB 128 was revived as ABX2-15. Glass fought her stage IV lung cancer with chemotherapy and radiation before it spread throughout her body and she decided to die at home. It took her five and a half days to die under palliative sedation, and she was in too much pain to say good-bye to her loved ones, her husband told the media. She also awoke from the sedation-induced coma one evening in a panic.

Glass’ agonizing death was a palpable reminder to Dan, who had become close friends with her, of how important it is that Death With Dignity laws be passed in all states—and that his work isn’t done.

“There are still 45 states for me to also focus on,” he says.

 

As Dan prepares to take his efforts nationwide, he is optimistic about the future given the momentum the aid-in-dying debate has gained, thanks to Brittany. In the end of August, he left a 21-year career in the consumer packaged goods industry to focus full-time on spreading her story to the media, legislators, and those in need, hoping his experience will help others understand how aid-in-dying programs help terminal patients.

“I try to ask everyone: Please, just leave enough room in your mind to listen to Brittany’s side of this,” Dan says. “If you don’t pursue the medicine, this legislation doesn’t affect you. But do not take this [option] away from people like Brittany.”

On the hardest days, when the e-mails have racked up and Dan is running low on steam, he finds inspiration here in his home, where his eyes land on wedding photos and travel shots captured by his late wife.

“When people ask me how I keep going, I think about what Brittany went through,” he says. “Compared to what she endured emotionally and physically, this is a walk in the park. How can I complain?”

 

Death With Dignity Requirements

To legally prescribe life-ending medication in California, the bills proposed would require that a doctor work with his or her patient to:

→  Confirm in writing the physician’s diagnosis and prognosis.

→  Determine that the patient is making a voluntary, informed decision, and that he or she has the mental capacity to make medical decisions. (If there are indications of a mental disorder, a mental health assessment must be performed by a specialist.)

→  Provide medical records that document all oral and written requests for aid-in-dying drugs. Submit a form completed by the patient indicating that he or she is of sound mind; is suffering from a terminal disease; has not been coerced; knows the request can be rescinded at any time; and whether family members have been informed of the decision.

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