752 people have exercised their right to die in Oregon—why you’ve only heard about Brittany Maynard

Brittany Maynard and Dan Diaz at their wedding; assisted suicide advocate Dr. Jack Kevorkian.
Brittany Maynard and Dan Diaz at their wedding; assisted suicide advocate Dr. Jack Kevorkian.
Image: PRNewsFoto/Compassion & Choices/Reuters
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She was a truly beautiful woman: Slender, button-nosed, with a wide and vivacious smile and dancing, sea-green eyes.

That’s the image we’ll remember of Brittany Maynard, the 29-year-old who became the face of the “Death With Dignity” movement last month after writing an op-ed for CNN detailing her choice to end her life after being diagnosed with a Stage 4 glioblastoma tumor—a malignant blob with a corona of invasive tentacles digging ever deeper into the healthy parts of her brain. On Saturday, Nov. 1, Maynard followed through with the decision she’d made, leaving behind a grieving husband, her loving family and friends and a slew of headlines and broadcast segments that brought voluntary euthanasia to the forefront of the news for the first time since the 1990s.

The pictures running alongside the features are the ones of Maynard in her prime, not as Maynard was just before her death, her face and body swollen by water retention due to the impact of steroids, her features drawn, her eyes heavy-lidded and her hair dull. That’s not a coincidence. When Maynard decided to become a public advocate for the right to die, it was immediately recognized that she could be a singularly mediagenic speaker for a cause that has long been relegated to the fringes.

As New York University hospital system Division of Medical Ethics chief Arthur Caplan told The Oregonian, the debate over voluntary euthanasia was “really an argument among older people. You didn’t really hear voices from anybody under 35, [and Maynard was] almost irresistible. She’s attractive, articulate, a newlywed. She’s just a media magnet.”

Compassion & Choices, the national right-to-die advocacy organization, certainly recognized what they had in Maynard. As soon as she called their headquarters in Denver, Colorado, they put into motion a brilliantly savvy national campaign to leverage her unique appeal as a spokesperson for their movement. Compassion & Choices arranged for People to do a heartfelt story on Maynard’s decision. They connected her with CNN Opinion to write a widely read and shared op-ed. They shot, edited and released to YouTube a mesmerizing six-and-a-half minute video featuring Maynard, her husband and her mother speaking movingly about her choice. And they helped her build a website and launch a social media campaign that turned her name and the #DeathWithDignity slogan into nationally trending hashtags.

Cynical media observers might well wonder why it took a lovely young woman to bring attention to an issue that is literally as old as the practice of medicine itself—and that has been the subject of legislative battle in the US since 1906, when another young woman, heiress Anna S. Hall, first advanced a campaign to legalize voluntary euthanasia in Ohio after watching the suffering of her cancer-stricken mother.

Here’s the harsh truth. Without Maynard, the media narrative around the right to die would have remained as it has been for the past two decades: On life support. Prior to Maynard, the individual hitherto most visibly associated with the cause was Dr. Jack Kevorkian, who spent eight years in prison for assisting in the suicides of 130 individuals back in 1999. The strident advocacy of the somewhat-creepy “Dr. Death”—who was also known for performing unusual experiments using the blood of cadavers and painting decidedly gruesome oil canvases, including one that featured a child eating the flesh off of a human corpse—probably did as much to set back the case for the right to die as advance it.

But Dr. Death did at least bring the issue into the headlines. In the 15 years since his sentencing, the national dialogue around the rights of the terminally ill to end their own lives has flatlined, eclipsed by silly rhetoric around Obamacare “death panels” and horrific political sideshows like the one that erupted around the Terri Schiavo case.

It absolutely required a young, vibrant, well-spoken and attractive individual like Maynard to bring the spotlight back to an issue that is only growing in importance as our nation ages and long-term, late-stage illness becomes more common. In an ideal world, the conversation around what to do when life is coming to an end would happen in an unsensational, rhetoric-free environment, but our media sadly has little interest in addressing difficult topics unless their standards are being carried by individuals who are perceived as martyrs (Maynard) or monsters (Dr. Kevorkian).

By allowing herself to become the face of the right-to-die cause, Maynard jumpstarted a moribund discussion, while putting herself in the crosshairs for attacks from religious leaders like Vatican bioethicist Monsignor Ignacio Carrasco de Paula, who called her decision to end her life a “reprehensible” and “absurd” error, and pundits on the far right, like blogger Matt Walsh, who in a viral post for conservative news site The Blaze called Maynard a coward.

Of course, the real face of the fight for “death with dignity” looks very different.

The median age of the 752 individuals who’ve used the assisted suicide option in the 20 years since Oregonians voted in the legal right to die is 71. Just six have been under the age of 35. It is terminally ill older Americans—those who believe they have lived rich and complete lives, who find the idea of spending the remainder of their time on earth undergoing complicated, painful and expensive medical procedures abhorrent, who want the option of controlling when and how they go so that they can say a coherent and articulate farewell to their loved ones — that have the most at stake in this debate.

Back in 1999, my friend Nara Garber‘s 66-year-old mother Ikuyo Tagawa Garber was diagnosed with a slightly less aggressive variant than Maynard’s — an anaplastic astrocytoma rather than a glioblastoma—but the prognosis was nevertheless grim and terminal. With aggressive treatment, Ikuyo might live five years. She and the rest of the family decided to pursue that path.

An initial surgery physically removed as much as possible of the tumor; upon recovery, Garber says that Ikuyo was at about 80% of her prior self, still active, still walking her beloved sheepdog Max daily. Within a year, however, the cancer was back, bigger and uglier than ever. Radiation therapy was prescribed along with a boosted dose of medications.

“By spring, my mother’s body was retaining so much fluid on account of the steroids that her weight had ballooned from 110 to 160 pounds, and her skin showed stretch marks everywhere. She was almost unrecognizable,” remembers Garber. “It was horrifying — for my father, for me, and most of all for my mother.  I will never, ever forget the meeting with the radiologist in which he pinned my mother’s scans to the wall and declared, ‘You look terrific.’ He was looking at the scans, and not at my bloated, unrecognizable mother, drooping uncomfortably in a chair, unable to hold her head up. Her speech was severely impaired by that point, but she yelled for the first and only time during her treatment.  ‘I was a working woman!’ she said, her speech slurred. ‘Look at me!’ This was one of those moments when you feel compelled to list everything that’s wrong with American medicine. This was the path that Brittany Maynard chose to avoid.”

A documentary filmmaker who has spent much of her career exploring issues of illness, absence and loss, Garber believes that “one should have the right to end things before everything descends into unmitigated horror. That’s why, when I first saw a video interview with Brittany Maynard, I very specifically said to my then fiancé — now husband — ‘She is exactly the sort of advocate this issue requires.’  Her youth, her poise, her promise, the joie de vivre she demonstrated throughout her life up to the time of her diagnosis — all of this made her an exceptional force for change.”

Whatever your opinion about Maynard’s decision and the media campaign that surrounded it, her life and her death have prompted serious conversation around a topic that has been swept under the rug for far too long, in part due to the unique fixation our culture with youth and health and our phobic resistance to accepting aging and death. That’s a tremendous legacy for the late 29-year-old to have left behind. And though the true beneficiaries of Maynard’s efforts might well be the ill and elderly, the bottom line is that it did, indeed, take a beauty for America to finally address this beast.