Brittany Maynard: Death with Dignity or Exploitation? Terminally Ill, She Plans to Take Her Own Life

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Philadelphia Inquirer, Thursday, October 30, Front Page, Page A1:

Brittany Maynard: death with dignity or exploitation?

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Brittany Maynard and husband Dan Diaz. (Courtesy: Tara L. Arrowood)

GALLERY: Brittany Maynard: death with dignity or exploitation?

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MICHAEL VITEZ, INQUIRER STAFF WRITER

LAST UPDATED: Thursday, October 30, 2014, 1:08 AM
POSTED: Wednesday, October 29, 2014, 10:54 PM

A California newlywed, Brittany Maynard, 29, diagnosed with a swift and fatal brain cancer, has moved with her husband to Oregon so she can have control at the end of her life under Oregon's pioneering death-with-dignity law.
She has legally obtained a lethal prescription and intends to use it, possibly as early as Saturday. And she has partnered with Compassion & Choices, an advocacy group pushing for more laws like Oregon's, to use her death to raise awareness and support for physician-assisted suicide, now available in only five states.
Her story and video went viral on the Web in the last three weeks. Since Oct. 6, nearly nine million people have viewed her six-minute video on YouTube - and a new video will be released today. More than three million have visited the Compassion & Choices websites.
"This chick is a hero," said Martha Frye Kienzle, who graduated from Jefferson Medical College in May and is now a  pediatric resident  in St. Louis, in a post on Facebook.

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Asked to elaborate, Kienzle e-mailed: "She's setting an example. People die terrible deaths in this country. And the issue of physician-assisted suicide has really dropped off the radar in recent years. It should be everyone's right to do what she's doing."
 Many disagree.
 Ira Byock, a hospice and palliative-care physician and author of Dying Well, is a longtime opponent of assisted suicide. He says the exploitation of Maynard's case "borders on pornographic. No light here and a lot of heat."
Maynard, of San Francisco, was diagnosed in January. By April, she had been given six months.
"There is not a cell in my body that is suicidal or that wants to die," Maynard told People.com. "I want to live. I wish there was a cure for my disease, but there's not.
"My glioblastoma is going to kill me," she added. "I've discussed with many experts how I would die from it, and it's a terrible, terrible way to die. Being able to choose to go with dignity is less terrifying."
The Oregon Death with Dignity Act was extremely controversial when enacted in 1997.  Oregon voters twice had to pass a statewide referendum to authorize it.  Ultimately, the law was upheld by the U.S. Supreme Court, which has ruled that assisted suicide is not a constitutional right but that the issue should be left to the "laboratory" of the states.
Washington and Vermont have passed laws almost identical to Oregon's, and courts in New Mexico and Montana have granted citizens in those states similar rights.
The Oregon law states that if a person is found by two doctors to be terminally ill with six months or less to live and deemed mentally competent, the patient can obtain a lethal dose of drugs. The dying must ingest the drugs themselves without any assistance from doctors or loved ones.
Versions of the Oregon law are awaiting legislative action locally. John Burzichelli, an assemblyman from Gloucester County, predicts what he calls aid-in-dying legislation will be passed by the New Jersey Assembly by the end of 2014.
"I think it could get out of the Senate," said Burzichelli, a sponsor. "I don't know if this governor signs it. But things change."
Prospects are dim in Pennsylvania. "Lying in quiet repose in committee" is how Daylin Leach, a state senator from Montgomery County, described his bill's status.
In 14 years, 1,173 Oregonians have had prescriptions written under the law; 752 have used them to die, on average 53 a year.
Many who obtain the drugs choose not to take them. Maynard has said that she feels no pressure to take the drugs but is glad to have them.
"I can't tell you the amount of relief it provides me," she said. "I know it's there when I need it."
Bioethicist Arthur Caplan at New York University strongly opposed the Oregon law at first but now has no objection. Time has shown him the law is rarely used and is not abused.
He says Maynard's impact could be huge politically.
"She is a newlywed, attractive, passionate, and committed," he said. "This shifts the issue of physician-assisted suicide from baby boomers to millennials. Critics of legalization know this and are especially worried. They have seen what can happen when young people are mobilized - Obama's election, gay marriage, and marijuana legalization."
Byock, who retired last year as head of palliative medicine at the Dartmouth Hitchcock Medical Center in Lebanon, N.H., said America knows how to provide compassionate care at the end of life but does not do so, calling that a national disgrace.  Too often, American doctors are not trained in end-of-life care. Patients are impoverished trying to pay for medical and long-term care. Nursing homes are poorly staffed and people are left feeling unwanted and undignified.
"I and the teams with whom I've worked have cared for hundreds of people as tragic as Brittany Maynard," he said. "We didn't let any of them die suffering. They died as gently and peacefully as I hope Brittany Maynard dies. This is possible today with really good medical care, including palliative care and hospice."
Barbara Coombs Lee, architect of Oregon's law and head of Compassion & Choices, debated Byock on public television.
"Hospice and palliative care is the gold standard," she told Byock. "It's wonderful. But it's not a miracle. And it cannot prevent the kind of relentless, dehumanizing, horrific decline that Brittany faces, where her disease will cause unending seizures and headaches and nausea and vomiting and pressure in her brain, and the loss of every bodily function, including thinking and moving.
"No palliative care, terminal sedation, or promise of effective palliative care can give Maynard the thing she treasures now," Coombs Lee said - "the hope of gaining control over her disease before it takes her life."
Maynard has objected to Byock's characterization that she was being exploited. She and her husband made the decision to move to Oregon long before she got involved with Compassion & Choices. And the amazing public respone has given the end of her life meaning. As she wrote on a Compassion & Choices website last week, "something monumental has started to happen."
On Friday, Maynard also posted photos of a trip to the Grand Canyon, and expressed "thanks to the kindness of Americans around the country who came forward to make my 'bucket list' dream come true."
Unfortunately, she added, the following morning she had her worst seizure so far and was unable to speak for hours.
She has said the date she ends her life is not set in stone but would depend on how she's feeling.
Her original plan was to celebrate her husband's birthday on Friday, and then on Saturday, surround herself with the people she loves, play her favorite music, and die peacefully in her own bed, her husband beside her.

Read more at http://www.philly.com/philly/health/20141030_Brittany_Maynard__death_with_dignity_or_exploitation_.html#pjkwYae6yKAdhgv4.99

A Slip-Up on the Way to Eternity=Gravestone Mistake

Wall Street Journal, Monday, October 13, 2014    Journal Report / Encore  Page R8

JOURNAL REPORTS

An Error Set in Stone—at the Cemetery

A Family Gets to the Bottom of a Slip-Up, and Learns They Aren’t Alone

ENLARGE

ROSS MACDONALD

By 

KATHLEEN A. HUGHES

Oct. 12, 2014 5:05 p.m. ET

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“There’s been a bit of family drama,” my brother Doug warned as I was packing an overnight bag to head to my father’s burial service in West Chester, Pa.

“They got the name wrong on Dad’s gravestone.”

“How could that possibly have happened?” I asked, incredulous.

“I don’t know, but I’m driving to the cemetery right now to take a look. I’ll send you a picture in a few minutes,” Doug said.

Sure enough, my phone soon flashed a picture of the error—set in stone:

HUGHES

1930 JAMES A., JR. 2013

AKA JAMES GLEASON

1942 MADELEINE M.

The first two lines and the last line were fine. My father, a former sales manager for a chemical company, was born James Aloysius Hughes Jr. in 1930, and he died suddenly from lung disease last December at age 83. He married Madeleine 29 years ago, and she plans to be buried next to him.

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It was the third line, the AKA, that was the problem.

Instead of “James Gleason” it was supposed to say “James Gregory,” the name my father adopted, after converting to Catholicism, in honor of his priest, Msgr. Gregory J. Parlante at St. Cornelius Catholic Church in Chadds Ford, Pa. And that made the mistake even weirder.

Finding the Humor

My father, the funniest and most supportive person I have ever known, was a self-proclaimed agnostic for most of his life, until our stepmother persuaded him to attend services with her at St. Cornelius. He was immediately taken with Msgr. Parlante, who shared the same hearty sense of humor.

ENLARGE

The original gravestone with the error, ‘Gleason.’ DOUGLAS HUGHES

ENLARGE

The corrected gravestone. MADELEINE HUGHES

While our father had told us five years ago that he planned to convert to Catholicism, my brother and I were surprised to learn during his funeral service in January that he had taken the name James Gregory after being baptized. Msgr. Parlante delivered a jovial account of his endless theological debates with James Gregory.

We waited five months to bury Dad’s ashes, since the Pennsylvania ground seemed too frozen in January and that allowed time for the granite gravestone to be created in Vermont and delivered—just in time for the burial ceremony.

About 20 close friends and family members gathered on that brilliantly sunny morning on the green grass of Birmingham-Lafayette Cemetery in West Chester.

“What’s up with Gleason?” my cousin asked in a hushed tone.

I walked over to check in with Msgr. Parlante, who was preparing to deliver the service. “How did this happen?” I asked. “Gleason?”

“Yes, and awaaay we go!” he laughed heartily, using the comedian Jackie Gleason’s trademark line. Msgr. Parlante confided, remarkably, that his own family’s gravestone in Resurrection Cemetery in Bensalem, Pa., has errors, too.

A Common Problem

So how often do these grave errors occur and why? Engraving a tombstone, meant to last for an eternity, hardly seems like the right moment to skip double-checking the facts.

Robert Fells, executive director of the International Cemetery, Cremation and Funeral Association in Sterling, Va., says he doesn’t know of anyone tracking the number of grave errors, or even, for that matter, the total number of gravestones and cemeteries in the U.S. That said, he estimates there are about 75,000 to 100,000 cemeteries.

We do have an idea of how much of a problem gravestone errors have been for veterans. Three years ago, a government report showed that thousands of gravestones in Arlington National Cemetery might have errors. A spokeswoman for the cemetery says they are in the process of correcting 4,125 grave markers—out of about 280,000 at the site—marred by mistakes including typos, misspellings and incorrect facts.

Gravestone makers say families are often at fault. While many companies send proofs to customers before setting a name in stone, stressed and often aging family members don’t always catch the errors. Small mistakes, one letter or number, can often be patched and redone with barely a trace. But with big errors, the engraver usually has to start over.

“This has been one of our worst years for families not catching typos,” says D.J. Bott, a co-owner of Bott & Sons Monument Co. in Brigham City, Utah. So far this year, he says, they have created about 225 gravestones and had to correct about 19 of them.

“Sometimes folks get confused,” he says. “They don’t remember the exact date someone died.” A common mistake is to look at the funeral program and use the burial date instead of the date of death.

Taking the Blame

In our case, one thing was clear: The error wasn’t the fault of my stepmother’s handwriting. Right before the burial service began, she unfolded the original yellow order form from Chardy Memorials in Kennett Square, Pa. It clearly said, “AKA James Gregory.”

Instead of a proof, however, she said she received a notice that the stone had been set in place. Tearfully, she had gone to the cemetery alone to take a peek—and confronted “Gleason.”

“I didn’t know whether to laugh or cry,” she recalls. She finally looked up at the sky and laughed. “I can’t wait to see what you had in mind with this,” she said out loud.

While my stepmother’s faith seems to have trumped her shock, I decided to track down the person who came up with “Gleason.” How do you accidentally engrave a tombstone with an entirely different name?

I called Chardy Memorials and spoke with Kenneth Roberts, the owner and grandson of the founder.

“It was my fault,” Mr. Roberts said apologetically. “I placed the order with the manufacturer as ‘AKA James Gregory,’ the way it was supposed to be, but when it came back as a proof, I missed it.”

Mr. Roberts said he has been in this business for 45 years and has had only one other correction, 37 years ago, when a date of Aug. 30 inadvertently became Aug. 31. He called the family to double-check, and since they were in a hurry, he read it to them over the phone, accidentally reading it as Aug. 30.

“We always guarantee our work,” he added. He noted that James Gleason was the name of a well-known actor who made films from the ’20s through the ’50s, but he doubts the young graphic designer who worked on the stone knew of him. And he declined to let me speak with her directly.

“I don’t make mistakes very often,” said Mr. Roberts with a sigh. But, he added, “I’m human.” (He did quietly replace the stone in August.)

Inspiration for a Toast

No harm done, really. The burial service went well. My stepmother carried the beige urn containing my father’s ashes to a pedestal next to the gravestone, and Msgr. Parlante blessed the urn with holy water. I read a poem, “To Laugh Often and Much,” incorrectly attributing it to Ralph Waldo Emerson, as many people do online. (Should have double-checked. The poem seems to have a long and convoluted history, making the authorship unclear.)

After the ceremony, we gathered for lunch in a nearby Italian restaurant and raised our glasses in a hearty toast to my father: “To Gleason!”

He would have laughed.

Ms. Hughes is a writer in California and New York. She can be reached at encore@wsj.com.