Terminal how the lonely keep
Taking Control: Facing Terminal Diagnosis, Brittany Maynard Plans to End Her Life
By Katherine Seligman
Note: Just days after this article appeared, Brittany Maynard carried out her plan to end her life in her Oregon home, surrounded by those she loved. In a final message. she said that the happiest people are those who “pause to appreciate life and give thanks.” She left behind a foundation advocating legal changes so that California and other states give terminally ill patients the right to “assisted death.”
“I do not want to die. But I am dying. And I want to die on my own terms.’’
With words like these, published in a recent editorial, 29-year-old UC Berkeley psychology graduate Brittany Maynard has become the most visible face in the intensely emotional debate over assisted death.
Diagnosed with terminal brain cancer earlier this year, Maynard is going public about her decision to, as she puts it, “go with dignity.” She has uprooted her life in the Bay Area and moved to Oregon so that when her symptoms grow intolerable, she can legally swallow a lethal dose of medication.
Other terminally ill patients have told their stories, but Maynard’s, perhaps because she is so young and so uncommonly honest, has been shared millions of times around the world. She has crowded celebrities off the cover of People—a story about her is among the top five most viewed articles ever to appear on People.com—and written a heartbreaking editorial for CNN.
The flood of reaction—support, awe and criticism—has been “hard to process,” she admits in a recently launched online campaign to help change laws which in all but five states ban assisted death. She says her intention was always to draw attention to the issue, rather than to herself.
“I did this,” says Maynard, “because I want to see a world where everyone has access to death with dignity, as I have had.”
She is now living in a rented home in Portland, Oregon that she shares with her husband, mother and two dogs, suffering from increasing pain but, when she can, enjoying everyday pleasures and checking items off her bucket list. Since her diagnosis, she has visited Yellowstone National Park and kayaked to Alaskan glaciers. This past week she made her first visit to the Grand Canyon, noting on her Facebook page: “Beautiful day with my loving family in one of the world’s most fabulous natural wonders. Many moments that simply took my breath away on a gorgeous helicopter ride.” But she also struggled with a severe headache and a major seizure.
It was intractable headaches that sent Maynard to the doctor last year. She had been treated for migraines, but was young and healthy, an avid runner and traveler who grew up in Orange County and chose Berkeley over UC Irvine, despite being offered a full scholarship at the latter.
She earned her degree in 2006 and had been married just a little more than a year to Dan Diaz, 42, also a Berkeley graduate. The two were trying to start a family. They had met on Match.com, and it took little time for Dan, who works in market research at Del Monte Foods, to realize he’d met the love of his life, says his brother, Adrian Diaz, associate director of state government relations in the UC Berkeley chancellor’s office.
There was no way Maynard could have anticipated the news that doctors delivered on New Years Day: She had a malignant brain tumor. She describes in an editorial for CNN how nine days later she underwent an extensive operation to remove the tumor and emerged from the surgery with an even more dire diagnosis. Doctors told her the tumor had become a more aggressive glioblastoma and that she could not expect to survive more than six months.
Maynard set out to learn everything she could about her disease, reading medical literature and reports, asking questions. Her brother-in-law says this was characteristic of her.
“She is incredibly smart,’’ says Diaz, who officiated her wedding. “She has an encyclopedic knowledge of her illness.’’
Maynard says she carefully considered all her options and wants more than anything to live. But she learned that more aggressive treatment would ultimately be futile and potentially make her life more painful.
“Because my tumor is so large,” she wrote, “doctors prescribed full brain radiation. I read about the side effects: The hair on my scalp would have been singed off. My scalp would be left covered with first-degree burns. My quality of life, as I knew it, would be gone.”
So Maynard plans to control how she spends the rest of her life and when the time comes, whether and how to end it—potentially as early as Nov. 1, although the timing, she reiterates, will depend on her health.
Her close-knit family—including her mother and stepfather and her husband’s Cuban American parents and three brothers—was devastated by news of her illness. But they are united in their support of her decision, says Adrian Diaz.
After her diagnosis, friends introduced her to a filmmaker who could help tell her story. She went on camera, describing her disease and the factors leading her to move to Oregon, where she had to find new doctors and qualify for the Death with Dignity law. Oregon’s law requires qualified patients to be declared terminally ill and mentally competent. Of 1,173 people prescribed lethal medication since 1997, 752 have used them.
Just having the medication available, she says, has been a huge relief: Even if she never uses it, she knows she can.
Maynard reached out to Compassion & Choices, a national advocacy group working to legalize end-of-life choice, which earlier this month posted her video and launched a campaign in her name.
She agreed to a small number of interviews, but the story quickly grew beyond anyone’s expectations.
Not everyone is supportive. Ira Byock, a palliative care doctor and author of the book Dying Well. believes Maynard is misguided. A former Dartmouth Medical School professor and now chief medical officer at the Providence Institute for Human Caring, he contends that physician-assisted suicide is never a valid option and that terminally ill patients only turn to it because they can’t get proper palliative care. Byock has never met Maynard, but in a PBS interview he made the case that she “could get excellent whole-person care and be assured of dying gently in her bed surrounded by her family.” Furthermore, he said, “physician-assisted suicide is not a personal act. It is a social act.”
Maynard shot back in an online comment that she found it, “disrespectful and disturbing when people discuss my personal health with details that are not accurate to push an agenda.”
Barbara Coombs Lee, president of Compassion & Choices, calls Maynard “mature and savvy beyond her years.
“She has mustered the courage to ask questions that dying people don’t ask,” she says. “What is the natural course of my disease? What are downsides of treatment? What kind of symptoms will I suffer as the disease advances?”
Maynard not only considered these questions, but did so in an “unblinking way,” says Lee, adding that Maynard’s youth, the dashed hopes of a life just beginning to unfold, partly explains why the public has responded so vigorously.
But it is her courage that most touches people.
“Before Brittany Maynard, this issue might have been something people didn’t relate to,” Lee says. “But Brittany says it’s about all of us. It’s about your family, about someone you love. Maybe it’s about you.”
Posted on October 27, 2014 - 2:10pmSource: alumni.berkeley.edu