DiversityNursing Blog

By Stephanie O'Neill

www.cnn.com 

It's the same age as Brittany Maynard, who last year was diagnosed with terminal brain cancer. Maynard, of northern California, opted to end her life via physician-assisted suicide in Oregon last fall. Maynard's quest for control over the end of her life continues to galvanize the "aid-in-dying" movement nationwide, with legislation pending in California and a dozen other states.

But unlike Maynard, Packer says physician-assisted suicide will never be an option for her.

"Wanting the pain to stop, wanting the humiliating side effects to go away -- that's absolutely natural," Packer says. "I absolutely have been there, and I still get there some days. But I don't get to that point of wanting to end it all, because I have been given the tools to understand that today is a horrible day, but tomorrow doesn't have to be."

A recent spring afternoon in Packer's kitchen is a good day, as she prepares lunch with her four children.

"Do you want to help?" she asks the eager crowd of siblings gathered tightly around her at the stovetop.

"Yeah!" yells 5-year-old Savannah.

"I do!" says Jacob, 8.

Managing four kids as each vies for the chance to help make chicken salad sandwiches can be trying. But for Packer, these are the moments she cherishes.

Diagnosis and pain

In 2012, after suffering a series of debilitating lung infections, she went to a doctor who diagnosed her with scleroderma. The autoimmune disease causes hardening of the skin and, in about a third of cases, other organs. The doctor told Packer that it had settled in her lungs.

"And I said, 'OK, what does this mean for me?'" she recalls. "And he said, 'Well, with this condition...you have about three years left to live.'"

Initially, Packer recalls, the news was just too overwhelming to talk about with anyone --including her husband.

"So we just...carried on," she says. "And it took us about a month before my husband and I started discussing (the diagnosis). I think we both needed to process it separately and figure out what that really meant."

Packer, 32, is on oxygen full time and takes a slew of medications.

She says she has been diagnosed with a series of conditions linked to or associated with scleroderma, including the auto-immune disease, lupus, and gastroparesis, a disorder that interferes with proper digestion.

Packer's various maladies have her in constant, sometimes excruciating pain, she says, noting that she also can't digest food properly and is always "extremely fatigued."

Some days are good. Others are consumed by low energy and pain that only sleep can relieve.

"For my kids, I need to be able to control the pain because that's what concerns them the most," she adds.

Faith and fear

Packer and her husband Brian, 36, are devout Catholics. They agree with their church that doctors should never hasten death.

"We're a faith-based family," he says. "God put us here on earth and only God can take us away. And he has a master plan for us, and if suffering is part of that plan, which it seems to be, then so be it."

They also believe if the California bill on physician-assisted suicide, SB 128, passes, it would create the potential for abuse. Pressure to end one's life, they fear, could become a dangerous norm, especially in a world defined by high-cost medical care.

"Death can be beautiful"

Instead of fatal medication, Stephanie says she hopes other terminally ill people consider existing palliative medicine and hospice care.

"Death can be beautiful and peaceful," she says. "It's a natural process that should be allowed to happen on its own."

Stephanie's illness has also forced the Packers to make significant changes. Brian has traded his full-time job at a lumber company for that of weekend handyman work at the family church. The schedule shift allows him to act as primary caregiver to Stephanie and the children. But the reduction in income forced the family of six to downsize to a two-bedroom apartment it shares with a dog and two pet geckos.

Even so, Brian says, life is good.

"I have four beautiful children. I get to spend so much more time with them than most head of households," he says. "I get to spend more time with my wife than most husbands do."

And it's that kind of support from family, friends and those in her community that Stephanie says keeps her living in gratitude, even as she struggles with the realization that she will not be there to see her children grow up.

"I know eventually that my lungs are going to give out, which will make my heart give out, and I know that's going to happen sooner than I would like — sooner than my family would like," she says. "But I'm not making that my focus. My focus is today."

Stephanie says she is hoping for a double-lung transplant, which could give her a few more years. In the meantime, next month marks three years since her doctor gave her three years to live.

So every day, she says, is a blessing.

By Dennis Thompson

Already-strong public support for right-to-die legislation has grown even stronger in the days since the planned death of 29-year-old brain cancer patient Brittany Maynard, a new HealthDay/Harris Poll has found.

An overwhelming 74 percent of American adults now believe that terminally ill patients who are in great pain should have the right to end their lives, the poll found. Only 14 percent were opposed.

Broad majorities also favor physician-assisted suicide and physician-administered euthanasia.

Only three states -- Oregon, Washington and Vermont -- currently have right-to-die laws that allow physician-assisted suicide.

"Public opinion on these issues seems to be far ahead of political leadership and legislative actions," said Humphrey Taylor, chairman of The Harris Poll. "Only a few states have legalized physician-assisted suicide and none have legalized physician-administered euthanasia."

People responded to the poll in the weeks after Maynard took medication to end her life in early November.

Maynard moved from California to Oregon following her diagnosis with late-stage brain cancer so she could take advantage of the state's "Death With Dignity Act." Her story went viral online, with a video explaining her choice garnering nearly 11.5 million views on YouTube.

A "poster child for the movement," Maynard helped spark conversations that allowed people to put themselves in her shoes, said Frank Kavanaugh, a board member of the Final Exit Network, a right-to-die advocacy group.

"I think it is just a natural evolution over a period of time," Kavanaugh said of the HealthDay/Harris Poll results. "There was a time when people didn't talk about suicide. These days, each time conversations occur, people think it through for themselves, and more and more are saying, 'That's a reasonable thing to me.'"

The poll also found that:

• Support for a person's right to die has increased to 74 percent, up from 70 percent in 2011. Those opposed decreased to 14 percent from 17 percent during the same period.
• Physician-assisted suicide also received increased support, with 72 percent now in favor, compared with 67 percent in 2011. Opposition declined from 19 percent to 15 percent.
• Sixty-six percent of respondents said doctors should be allowed to comply with the wishes of dying patients in severe distress who ask to have their lives ended, up from 58 percent in 2011. Opposition decreased from 20 percent in 2011 to 15 percent now.

"The very large -- more than 4-to-1 and increasing -- majorities in favor of physician-assisted suicide, and the right of terminally ill patients to end their lives are consistent with other liberal social policy trends, such as support for same-sex marriage, gay rights and the decriminalization of marijuana, seen in the results of referendums and initiatives in the recent mid-term elections," Taylor said.

Support for the right-to-die movement cut across all generations and educational groups, both genders, and even political affiliation, the poll found.

Democrats tended to be more supportive of right-to-die legislation, but 56 percent of Republicans said they favor voluntary euthanasia and 63 percent favor physician-assisted suicide.

Kavanaugh was not surprised. "People think of this as a liberal issue. But I find that as I talk to [conservatives], you can appeal to them on the basis of 'get the government the hell out of my life,'" he said.

But the public is split over how such policies should be enacted, with 35 percent saying that the states should decide on their own while 33 percent believe the decision should be made by the federal government, the poll found.

"Most of the people I know in the field whose opinion I put stock in don't feel there's ever going to be federal movement on it," Kavanaugh said. "You're just going to have to suffer through a state-by-state process."

Kavanaugh does believe this overwhelming public support will result in steady adoption of right-to-die laws.

"I think this will become the ultimate human right of the 21st century, the right to die with dignity," he said. "There are good deaths and bad deaths, and it is possible to have a good death."

Despite increasing public support for assisted suicide, stiff opposition remains in some quarters.

"Assisted suicide sows confusion about the purpose of life and death. It suggests that a life can lose its purpose and that death has no meaning," Rev. Alexander Sample, archbishop of the Archdiocese of Portland in Oregon, said in a pastoral statement issued during Maynard's final days.

"Cutting life short is not the answer to death," he said. "Instead of hastening death, we encourage all to embrace the sometimes difficult but precious moments at the end of life, for it is often in these moments that we come to understand what is most important about life. Our final days help us to prepare for our eternal destiny."

Todd Cooper, a spokesman for the Portland archdiocese, said the debate over assisted suicide touches him on a very deep level because of his wife, Kathie.

About 10 years ago, she also was diagnosed with terminal brain cancer. She endured two brain surgeries, two years of chemotherapy and six weeks of radiation therapy, and remains alive to this day.

"If she'd given up the fight for life, she wouldn't be here," Cooper said. "That doesn't necessarily happen in every case, but it gives hope for those who struggle to the very end."

source: www.medicinenet.com