Tag: right to die
A Social Worker With ALS Makes The Decision To Guide Her Own Death

A Social Worker With ALS Makes The Decision To Guide Her Own Death

By Esmeralda Bermudez, Los Angeles Times (TNS)

LOS ANGELES — The dishes she used to scrub after each family dinner pile up by the sink. The husband who sweetly called her his trophy wife cries alone in the room where he now sleeps. The 11-year-old son with big brown eyes who once cuddled on her lap now hardly comes near her.

She can’t move. She can’t talk. She can only blink her eyes.

Angie Bloomquist was diagnosed with amyotrophic lateral sclerosis less than two years ago. Since then, the fatal illness known as Lou Gehrig’s disease has shut down just about every muscle in her body. The toll on her family has been almost as devastating.

“It’s like a tornado ripped through our home,” Angie says. “And destroyed everything we built.”

She speaks through a special computer that tracks her eye movement, a painstaking task that exhausts her after a few sentences.

Still, in her final days, Angie finds herself pushing more than ever — for the choice to die through doctor-prescribed medication.

Proponents know it as “aid in dying.” Opponents call it assisted suicide. Since it was legalized in Oregon in 1994, there have been dozens of attempts to have similar versions approved in nearly 30 states. All have failed, except four: Washington, Vermont, Montana, and New Mexico.

In California, the issue hasn’t been brought before lawmakers or voters since 2007. This year, buoyed by the story of Brittany Maynard, who left her Bay Area home for Oregon to carry out her legally assisted death, supporters have geared up for another try.

One bill is making its way through the Legislature. Recently, two lawsuits were also filed against the state aiming to legally protect physicians.
Angie, who says she knew long before she was diagnosed that she would want to hasten her death if she became severely incapacitated, joined one of those lawsuits this month.

“I know how I want to live and know that that life is no longer possible,” she says. “The right to die should be my right.”

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Angie’s symptoms began in early 2013, just before her 47th birthday.

The fingers on her right hand twitched and she had trouble typing. She became exhausted walking from the parking lot to her office at Miller Children’s Hospital in Long Beach, where she was a social worker. One day, leaving work, she inexplicably lost her balance and fell hard on a staircase.

In August 2013, after months of tests, Angie and Fred, her husband of 15 years, got the diagnosis: She had ALS.

“My heart sank and my body went cold,” Angie says. “Life, as we knew it, ceased to exist.”

The disease affects the brain and the spinal cord’s nerve cells. It eventually paralyzes sufferers, while their minds almost always remain unaffected.

About 30,000 Americans live with ALS. Half of them die within two to five years. Breathing gradually becomes more difficult, and often, patients suffocate. Cases like that of famed theoretical physicist Stephen Hawking, who has lived with the disease for more than 50 years, are a rare exception.

Angie, ever the realist, immediately began planning for her death. She had spent 23 years as a social worker, the last decade in hospitals watching children fight futile battles against ruthless diseases. She had guided families, preparing them for their child’s death.

Now, the time had come to guide her own.

On a recent day, Angie rests in her usual spot in the family’s television room. Fred walks through the 112-year-old Craftsman they share with their son, Andres, and their two dogs, Viejo and Peanut.

The sun is just about done setting over San Pedro. The jasmine climbing over the white picket fence Fred and Angie put up years ago fills their front yard with a sweet scent.

Fred turns on the light in the first bedroom.

“This is where the magic happens,” he says, in a not-so-funny tone. “Or at least, it used to.”

Their former bedroom is now Angie’s room. It has two twin beds: Angie’s hospital bed and, next to it, a bed for her overnight caretaker.

The dresser is packed with a mix of medications, tubes, wipes, drops, syringes.

Fred widened doorways, built a side deck and a wheelchair ramp and remodeled the bathroom to make room for a commode. Soon after Angie was diagnosed, he organized a ceremony to renew their vows. Beneath two white ash trees in their backyard, his wife giggled as he tried to explain, using the lyrics of his favorite love songs, how much he loved her.

“I’ve had some deliriously happy times in my marriage,” he says. “And I know that those moments, unlike the human body, are everlasting.”

Fred tries to be honest with Andres about what’s happening to Angie. But the truth is, most days, they avoid the topic.

“I’m not really the talking type,” Fred says.

He has to be strong for Angie — a woman who used to shush rowdy neighbors in her pajamas at 3 a.m. and throw bouncy castle parties for some 20-plus 5-year-olds. When he cries, he cries alone in his room, off the kitchen.

That’s the thing about losing the girl of your dreams. Day in, day out, it hurts like hell.

“I’m not going to reduce her to a few fanciful stories,” Fred says. “She was too vast, too great. She was a tidal wave.”

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The Bloomquists thought of going to Oregon, but qualifying for the law could take months. Angie also considered refusing food and slowly drifting to her death through sedation, but that’s not how she wants to go.

The lawsuit is being handled by attorney Kathryn Tucker, executive director of the L.A.-based Disability Rights Legal Center, who’s overseen these kinds of cases on a national level for years.

Proponents are ready to go to the ballot in 2016 if the pending legislation fails. Tucker believes a court decision is the best way for California to win approval. She’s had recent success with similar lawsuits in Montana and New Mexico and has another one pending in New York.

Despite the traction supporters have gotten recently, the issue faces great opposition. Doctors, Catholic leaders and some disability rights advocates object on ethical, religious and medical grounds.

“If assisted suicide is approved, it would result in many lives ending without their consent,” says Marilyn Golden, senior policy analyst with the Disability Rights Education and Defense Fund. “No safeguards have ever been enacted or proposed that can prevent that outcome, which can never be undone.”

Golden says combining a profit-hungry health care system with assisted suicide could result in patients being denied care and steered toward dying. Heirs and caregivers could also become abusive, and mentally ill or suicidal patients who are not terminal would have few safeguards to protect them from killing themselves.

Tucker says if the lawsuit succeeds, those safeguards — such as requiring a physician’s second opinion and judging metal competence — would be left for doctors to decide.

As for Angie, attorneys say they plan to lobby the court for a special permission to help her die as soon as possible — at her home, with her family by her side. She entered hospice care recently and may not have more than a few months to live.

“She’s accepted that this disease has brought her to the doorstep of death,” Tucker says. “She just wants to be able to have a measure of control to have a more dignified and peaceful death.”

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Each day after Andres leaves for school and Fred heads to work, Angie’s three-hour routine begins. It takes her that long to move from her bed to the recliner in the television room.

Estella Ganuza, her morning caretaker, feeds her through a tube. It’s a struggle to not choke on her saliva.

Then, like a stork carrying a sleeping child, Ganuza uses a hydraulic machine with a giant sling to lift Angie’s limp body from the bed onto a commode. She wheels her into the shower, dresses her, combs her hair and transports her in the sling to her recliner.

Here, in the book-filled room where the family used to watch TV after dinner, she remains until night falls and it’s time to go to bed.

Her loved ones have stitched together a round-the-clock schedule of care, with one relative watching over Angie each day of the week. They bring food, do laundry, wash dishes, sweep the floors. Fred handles weekends.

Her mother massages her hands and feet. Her best friend from second grade goes on Costco runs. Her former hospital colleagues drop by and share stories that make Angie’s eyes light up.

“I love them and don’t know how I would have coped without their daily presence,” Angie says.

Her worst fear, she used to tell everyone, was losing her ability to speak.

How would she connect to the ones she loved the most?

When Angie’s speech went away about six months ago, she felt Andres begin to drift from her.

Maybe it’s his age. Maybe he just doesn’t know what to say or how to say goodbye.

He goes to therapy, at Angie’s request. He likes to play and joke with Fred. He’s a bright boy who says he’s proud of his mother, above all else, “for putting up with me.”

After school each day, he bolts through the front door, straight into the television room.

“Hi, Mom!” he says.

He leans over the recliner and, for the briefest moment, lays his head on Angie’s chest.

Angie closes her eyes.

(c)2015 Los Angeles Times, Distributed by Tribune Content Agency, LLC.

Photo: Fred Bloomquist reaches out to touch the cheek of his wife of 15 years, Angie, in their San Pedro home. “She’s my everything,” Fred said. (Katie Falkenberg/Los Angeles Times/TNS)

California Senate Panel Endorses Bill Allowing Terminally Ill To Commit Suicide

California Senate Panel Endorses Bill Allowing Terminally Ill To Commit Suicide

By Jessica Calefati, San Jose Mercury News (TNS)

SACRAMENTO, Calif. — Legislation that would allow terminally ill Californians to take their own lives cleared a major hurdle Wednesday, winning the approval of the state Senate Health Committee on a party-line vote.

Senate Bill 128 was written for Brittany Maynard, a young California woman whose public struggle last year with aggressive, inoperable brain cancer and her choice to end her life sparked international debate about the morality of assisted suicide.

The Senate committee’s endorsement of the bill came after more than two hours of emotional testimony that moved lawmakers and others seated in the packed hearing room to tears.

“Being a good mother meant letting (her) go when everything inside of me screamed, ‘Hold on,'” said Maynard’s mother Deborah Ziegler, who didn’t support her daughter’s choice to die until she started watching her suffer.

Supporters of California’s so-called right-to-die legislation say a change is desperately needed to give the terminally ill greater control over deaths that will otherwise be gruesome and painful, while opponents say the measure is poorly crafted and would foster abuse of the elderly.

“Do not mistake temporary popularity with wisdom,” said Warren Fong, president of the Medical Oncology Association of Southern California and an oncologist. Prescribing life-ending medication would violate a doctor’s oath to do no harm, he said.

“We’ve asked oncologists, ‘Would you do it?’ and they all say ‘No,'” he said.

Democratic state Sen. Lois Wolk, a sponsor of the legislation, said she was “thrilled” with the committee’s 5-2 vote in favor of the measure, but said she knows the proposal’s path to becoming law will be rocky.
Gov. Jerry Brown, a practicing Catholic, hasn’t taken a position on the bill but may oppose it for religious reasons.

The California Catholic Conference released a scathing statement Wednesday afternoon following the committee vote, saying it would continue to “actively and vigorously” oppose the bill.

“We understand and share the concern for the dying expressed at today’s hearing. It is a natural impulse for human beings,” said Ned Dolejsi, executive director of the California Catholic Conference. “But when someone asks for assistance in killing themselves, it is really a call for help, care, and compassion during the dying process.”

Earlier Wednesday, an advocacy group and the family of Maynard, a former East Bay resident, released a video that was recorded a few weeks before her death last year in Oregon from brain cancer. She argued that all terminally ill Californians should have the right to die comfortably at home.

The ease she sought wasn’t available in California, her home state, but Maynard and her family are fighting for change.

“How dare the government make decisions or limit options for terminally ill people like me,” Maynard said in the video, speaking in a calm, steady tone.

“Unfortunately, California law prevented me from getting the end of life option I deserved,” she said. “No one should have to leave their home and community for peace of mind, to escape suffering and to plan for a gentle death.”

Wolk and other sponsors of the proposed legislation — Democratic state Sen. Bill Monning and Democratic Assemblywoman Susan Talamantes Eggman — released the video footage Wednesday morning at a Sacramento news conference.

Speaking to reporters, Maynard’s mother and widower urged lawmakers to back the measure and support Compassion and Choices, an advocacy group that publicized Maynard’s story and is fighting for death with dignity laws in statehouses across the country.

“Life is more than breathing air in and out of your body,” said Ziegler. “The definition of a good life and a good death varies person to person. Californians need the freedom to deal with terminal illness as they determine.”

Maynard’s husband, Dan Diaz, conceded that death with dignity is not the right choice for everyone, but having the choice is vital to preserve fairness and decency for the terminally ill, he said.

“What my wife did on Nov. 1 was by her design,” Diaz said, referring to the date Maynard took life-ending medication and died in her sleep. “She avoided a painful, drawn out process and harmed no one else.”
Had Maynard allowed her brain tumor to run its course, her passing would have been the opposite, she said in the video.

“I want to leave this earth in my home, in the arms of my husband and my parents,” Maynard said in the video. “I cannot change the fact that I am dying, but I am living my final days to the fullest.”

Other terminally ill patients such as Kara Tippetts, a 38-year-old Colorado mother of four, wrote an open letter to Maynard in October urging her not to end her life.

Tippetts wrote that suffering can be “the place where true beauty can be known.” She died this month of breast cancer.

(c)2015 San Jose Mercury News (San Jose, Calif.), Distributed by Tribune Content Agency, LLC

Photo: Vinath Chandar via Flickr

‘Death With Dignity’ Law Is Least Slippery Slope

‘Death With Dignity’ Law Is Least Slippery Slope

The story of Brittany Maynard has revived the debate over Oregon’s Death with Dignity Act. The law lets terminally ill patients end their lives with the aid of a doctor. That Maynard is a pretty 29-year-old newlywed using her personal tragedy to broaden support for such laws provokes and rankles foes of physician-assisted suicide. She also rejects the term “suicide.”

Maynard suffers from a malignant brain tumor, which extensive surgery failed to contain. Given six months to live about six months ago, she and her family moved from California to Oregon specifically to obtain the right to shorten her suffering without resorting to deception. Washington state, Montana, New Mexico and Vermont now permit doctor-assisted suicide, as well.

Foes of such laws make a “slippery slope” argument. The existence of this option, they say, would pressure sick people to kill themselves.

But if you think about it, these laws can do the opposite. They can lessen a pressure that already exists.

It’s no secret that very sick people often shorten their painful lives with doctors helping them. And it’s no secret that, as these laws’ critics say, dying people sometimes feel pushed by heirs and exhausted caretakers to end their ordeal with a bottle of pills.

But by bringing dying patients’ desire to end their lives into a legal framework full of safeguards, such decisions can be made — or not made — with greater compassion and less deception. The Oregon law insists that two physicians determine that the person will probably die in six months or less. Patients must be screened for depression and told of alternatives, such as hospice care. And the patients must take the lethal prescription themselves.

“The patient can change their mind right up to the last minute,” Maynard has said. “I feel very protected here in Oregon.”

Making a different case, social conservative Michael Gerson writes that a “right” to die “begins to look more and more like an expectation.” But laws such as Oregon’s move any expectation into the open.

Terminally ill people are often very depressed and socially isolated. And if they are surrounded by “loved ones” who, for personal reasons or by their own notion of mercy, think an earlier death would be for the best, death-with-dignity laws can bring in outside guidance. If depression is making them feel life is not worth continuing, that can be treated. And the patients can learn about other approaches to deal with pain — that is, palliative care.

This is a very uncomfortable conversation but one that must be held. Terminal illness does not come with simplistic guidelines. That is doubly so in an era when medical technology can prolong a life in agonizing ways — ways that would have been unrecognizable in the world of the Victorian deathbed. For example, is rejecting another round of chemo a decision to die?

Nor are there easy political divisions between supporters and opponents of such laws. Libertarian conservatives support them as an expression of autonomy over one’s body.

A Gallup poll found a slim majority of Americans now regarding “doctor-assisted suicide” as morally acceptable. The percentage rises when “suicide” is replaced by a less emotional term. In another Gallup poll, 70 percent agreed that doctors should be allowed to end patients’ lives “by some painless means” if that’s the wish of the patients and their families.

Caring for the terminally ill creates ethical slopes going in all directions. What death-with-dignity laws can do, ironically, is apply some brakes to making such decisions. As such, they may offer the least slippery slope of them all.

Follow Froma Harrop on Twitter @FromaHarrop. She can be reached at fharrop@gmail.com. To find out more about Froma Harrop and read features by other Creators writers and cartoonists, visit the Creators Web page at www.creators.com.

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