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Brittany Maynard’s dilemma: choosing the right time to die

AP Photo/Maynard Family, FILE

Brittany Maynard is facing a horrific dilemma: The 29-year-old terminally ill brain cancer patient needs to pick a day to die when she's unable to laugh or feel joy with loved ones, but before she becomes completely incapacitated from seizures. She needs to be able to handle and swallow lethal drugs prescribed by her doctor to be in compliance with Oregon's death with dignity law.

Maynard became famous earlier this month when she posted a YouTube video — with more than 9 million views — explaining why she uprooted her life and moved to Oregon with her husband several months ago. In a new video posted on Wednesday, Maynard said she may not end her life on Nov. 1, as originally planned.

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"If Nov. 2 comes along and I've passed, I hope my family is still proud of me and the choices I've made," she said in the video. "If I'm still alive, I know we'll still be moving forward as a family … and that the decision will come later."

Maynard recently returned from a family trip to the Grand Canyon, the last adventure item on her bucket list, and she said she's still smiling often enough that "it doesn't seem like the right time." Still, she worries that she may "wait too long" and have her autonomy taken away if an unpredictable seizure renders her unable to use her hands, see, or swallow. After the last one a week ago, she couldn't speak for several hours after regaining consciousness.

Deciding when to die "is a difficult decision, so personal, private and individual, and that's why it should remain with patients themselves, rather than the government," said Barbara Coombs Lee, president of the death-with-dignity advocacy group Compassion & Choices who recently met with Brittany and her family. Death dates set by patients are typically "soft targets" that depend on symptom progression.

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An Oregon woman with liver cancer whom Lee counseled initially thought she would end her life in May but actually decided to commit the act more than six months later. "She told me once she crossed the threshold between living and existence, she knew it was time to die," Lee said.

Brittany Maynard (left) hugged her mother, Debbie Ziegler, next to a helicopter at the Grand Canyon National Park in Arizona.
Brittany Maynard (left) hugged her mother, Debbie Ziegler, next to a helicopter at the Grand Canyon National Park in Arizona.AP Photo/TheBrittanyFund.org

In states where right-to-die laws aren't on the books — only Oregon, Vermont, and Washington have them — patients sometimes take their own lives in a violent manner, while they're still strong enough to do so. "I think these laws actually prolong people's lives," Lee said.

Jim Carberry, of Natick, helplessly watched his own cancer-striken wife, Margie, starve slowly to death over five weeks in the summer of 2011 after she decided to have her feeding tube removed. "No one should have to go through that kind of prolonged pain and suffering," Carberry said. "She hung on to see my daughter graduate from high school but then she wanted to die."

Palliative care specialists at Massachusetts General Hospital gave Margie prescription narcotics, Ibuprofen, and other pain medications, but her pain never fully abated and at times became excruciating.

"Doctors told her there was nothing more they could do for her," Carberry said. "No patients in that situation should be forced to go through prolonged pain and suffering."

Brittany Maynard and her husband, Dan Diaz, at the Grand Canyon National Park in Arizona.
Brittany Maynard and her husband, Dan Diaz, at the Grand Canyon National Park in Arizona.AP Photo/TheBrittanyFund.org

He worked with Death With Dignity, an advocacy group that worked to pass assisted dying laws in Oregon and Washington, and succeeded in getting such a law on the Massachusetts election ballot in 2012. It was narrowly defeated, and state legislation that would allow doctors to administer medications to enable patients to end their own lives has been languishing in committee.

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Maynard has made it her last mission to get death-with-dignity laws passed in more states. Her youth, beauty, and presence — all ingredients that helped her video go viral — resonate with millenials. "I think she's going to be a game changer," said Peg Sandeen, executive director of Death With Dignity National Center. "We know from polling that younger people support the idea in theory, but her story really puts a face to it."

Opposition groups like Not Dead Yet argue that legalization of what they call "assisted suicide" often looks acceptable when focusing on single patient anecdotes.

"However, not every terminal prognosis is correct, not everyone's doctors know how to deliver expert palliative care, and not everyone has a loving husband and family," wrote Not Dead Yet in a statement on its website posted in response to Maynard's first video. "A closer examination of the issue reveals the immense harm legalization of assisted suicide poses to vulnerable people as well as society as a whole."

Catholic organizations and other religious leaders in the Jewish, Christian, and Muslim clergy have condemned the practice of patients ending their own lives as antithetical to religious doctrine and provided funding to defeat death-with-dignity ballot measures in Massachusetts and other states.

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But Carberry, once against such laws himself, wonders how many opponents have actually witnessed a loved one die a slow, painful death. "Most people who see that walk away profoundly impacted," he said. "If my involvement saves one family from having to go through this, it will be worth it."


Deborah Kotz can be reached at dkotz@globe.com. Follow her on Twitter @debkotz2.