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Brittany Maynard and the debate about death that America needs to have

On Saturday, Brittany Maynard killed herself.

Maynard's death was a suicide, but a legal one. The 29-year-old, who was terminally ill with a rare and advanced brain cancer known as a glioblastoma multiforme, had moved to Oregon to use the state's Death With Dignity law.

We don't like to think about death — and so we don't. State legislatures rarely grapple with assisted suicide laws in any serious way. Regulating death is terrible politics. And so death goes unregulated. But the dearth of debate and discussion doesn't eliminate assisted suicide. Instead, it pushes it into the shadows, where doctors will only admit anonymously to helping patients end their own lives.

Surveys of oncologists show that some cancer doctors, when asked anonymously, will admit to helping patients die. A heavily-cited 2000 survey of more than 3,000 doctors, published in the Lancet, found one in seven oncologists had "carried out euthanasia or physician-assisted suicide."

The real number might be much higher. Most doctors don't like talking about physician-assisted suicide because they work in states where it is technically illegal. "People don't want to admit to it," says Alan Meisel, a bioethicist at the University of Pittsburgh who has written extensively on end-of-life laws. "We've got no good data and everything we know is conducted by anonymous questionnaire."

There are legal ways for doctors to help patients end their lives. Assisting patients, for example, in ending eating or drinking is one way to guarantee death. But that can be a painful end. Patients can become delirious with thirst. If they ask for water, should a doctor chalk it up to delirium, and continue denying hydration, or cede to the patient's demands?

"The patient may change her mind and say, give me water, give me ice," Meisel says. "And then what are you supposed to do?"

Death without dignity

Eric Holland, a brain cancer specialist at the University of Washington, calls glioblastoma multiforme "the terminator" of cancers. "It's like the movie where there is this a killer that you can't stop, no matter what you do," he says.

I've spent a lot of time over the past few days reading about what it's like to die from glioblastoma multiforme. Median survival for patients is 14.6 months. Death often happens with little dignity. There's an essay that Stacey Burling, a Philadelphia Inquirer reporter, wrote in 2011 about her husband's death, that I can't get out of my mind. She describes the cognitive decline as "Alzheimer's on steroids":

He mistook the kitchen trash can for a toilet. He couldn't figure out how to use a phone. I had to pull him with both hands through unfamiliar buildings because he could no longer walk normally or navigate. I bought Depends, just in case. Two days after we started using them, he asked, "What do you figure our last name is?"

Candace Mondello, who lost her brother Kim to the same tumor, describes the experience similarly. "Kim lost his ability to walk, talk, feed himself or use the bathroom," she wrote in a 2012 essay. "He lost all dignity at this point. He had to be fed, wear diapers and was bed-ridden."

This is the kind of death that Maynard feared. A death without dignity. "My glioblastoma is going to kill me, and that's out of my control," Maynard told People. "I've discussed with many experts how I would die from it, and it's a terrible, terrible way to die." This is the kind of death that, on Saturday, she avoided.

The Oregon aid-in-dying experience

Three states have passed laws to legalize physician-assisted suicide: Oregon in 1997, Washington in 2008, and Vermont in 2014. In these states there are strict rules about how and when patients can use these laws.

In Oregon, for example, patients must request the terminal medications in writing and then again, 15 days later, orally. There's another 15-day waiting period, after the spoken request, for the patient to fill the prescription. Doctors only grant approximately one in six requests for aid-in-dying, one study found. Cases are routinely rejected if the patient's main motivation appears to be depression or wanting to avoid becoming a burden to others.

Oregon keeps detailed statistics on who uses the aid-in-dying law (largely the college educated and affluent), what type of diseases they have (mostly cancer) and whether they received hospice care prior to taking the lethal medication (about 85 percent do).

In Oregon, physician-assisted suicide is out in the open. That means we can know 752 people used the law to kill themselves between 1997 and 2013. And we can know that about one-third of people who get the prescriptions for lethal medications don't use them, and ultimately die of other causes. We have data that lets us debate whether the law is working well or poorly. We can see if some physicians seem to be abusing it, and we can look for ways to give patients an easier death — or, perhaps, the counseling and pain relief that will let them live a few more good days.

"For people who believe this can be regulated and made available as a last resort, the Oregon experience is reassuring," says Tim Quill, a leading palliative care expert at the University of Rochester who supports aid-in-dying laws. "It shows that this can happen in the open, and work."

In a Facebook post published shortly before she died, quoted by People, Maynard remained fierce in the face of her disease. "Today is the day I have chosen to pass away with dignity in the face of my terminal illness, this terrible brain cancer that has taken so much from me ... but would have taken so much more."

The question that legislators across the country need to face is why Maynard shouldn't have been allowed to make that choice. Consider the case of Robert Mitton, a 59-year-old Colorado resident with terminal brain cancer. Mitton received his diagnosis in January and was told he has six months left to live. Since Colorado doesn't have any death with dignity law, Mitton plans to end his life himself by pulling a plastic bag over his head and filling it with helium.

"I don't want to go through the very last throes of swelling up and drowning in my own blood. It is supposed to be a very ugly death when your aortic heart valve finally goes," Mitton told a local television station.

Why shouldn't others in Maynard's terrible position, people like Robert Mitton, be able to make her choice? Why is it better for physician-assisted suicide to remain in the shadows?

Legislators may come to different conclusions. Some might look at Oregon's data and decide that it's the wrong future for their own states. But the debate itself, about how we regulate death, is absolutely worth having.

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