The San Jose Mercury News reported 25 March 2015:
Right-to-die group offers aid, in secret, as California legislation is debated By Lisa M. Krieger
As legislators prepare to debate a “right to die” bill in the state Capitol, volunteers are already helping suffering people end their lives — surreptitiously, without authorization or official oversight — in bedrooms across California.
“The sneaking around … feels awful. It shouldn’t have to be that way,” said Myriam Coppens, a Santa Cruz resident who has served as a “guide” in the deaths of 16 people with advanced cancer, neurological diseases or incurable illnesses.
“This right is so fundamental to me,” said Coppens, a 74-year-old grandmother, retired nurse, family therapist and volunteer with the Final Exit Network, a right-to-die group that sees its guidance as a legally protected form of free speech. “How can you say no to someone who has a legitimate need — people struggling with crippling pain that cannot be taken care of with medication, or who face unbearable indignities?”
The issue is being fiercely debated across the nation, with critics decrying Final Exit’s efforts as immoral. Although California criminalizes “aiding, advising or encouraging a suicide,” the legal interpretation of those words is cloudy, and the law is rarely enforced. And now there is a mounting effort to change it.
California lawmakers Wednesday will hold their first hearing on Senate Bill 128, legislation that would
allow doctors to prescribe life-ending medication. But it would be a much narrower law than preferred by Final Exit, a loose-knit group of volunteers and members whose organization was founded in 2004 as an offshoot of the now-defunct Hemlock Society. That’s because SB 128 would apply only to people who are terminally ill.
Among those testifying will be the family of the late Brittany Maynard, an East Bay brain-cancer patient who last year moved to Oregon to hasten her death and sparked a national debate about right-to-die laws. Before she died in November, the 29-year-old Maynard recorded testimony, to be unveiled Wednesday, in favor of the California legislation.
Unlike Maynard, many Californians are unable or unwilling to leave their homes to die, according to the Final Exit Network.
That’s why Final Exit exists. The group does not keep statistics, but last year, 46 Californians applied to become “members” of the network, seeking information or guidance from the group.
The network’s approach is much broader and far more controversial than what is proposed by SB 128, sponsored by state Sens. Bill Monning, D-Monterey, and Lois Wolk, D-Davis, and Assemblywoman Susan Talamantes Eggman, D-Stockton.
The bill would permit a doctor to prescribe a lethal pharmaceutical drug, would apply only to those with less than six months left to live and includes supportive services such as hospice and palliative care. Modeled after laws in Oregon, Vermont and Washington state, it would make the process subject to state oversight.
In contrast, the Final Exit Network has no such oversight and provides no medication, instead offering information about a nonpharmaceutical method. Volunteers work for free. And aid is provided not just to the terminally ill but also to those who have intractable pain, an irreversible physical illness or progressive disabilities such as Lou Gehrig’s disease, Parkinson’s disease, multiple sclerosis, muscular dystrophy, emphysema, congestive heart failure and Alzheimer’s disease.
Although it “speaks to the need,” the network’s approach falls short, said Barbara Coombs Lee of the advocacy group Compassion & Choices, a much larger and more mainstream offshoot of the Hemlock Society that focuses on changing laws.
“It is not integrated into other aspects of end-of-life care” such as palliative care or hospice, she said. “It isolates dying. So long as the option remains covert, forbidden and underground, it will not be a genuine source of relief.”
Final Exit Network volunteers say they are frustrated by the slow pace of legislative reform, even as medicine gets ever-better at prolonging the end of life. They compare their movement to women’s suffrage in the ’20s, civil rights in the ’60s, abortion access in the ’70s and the fight for medical marijuana in the ’90s.
“By telling people how it is done and sitting beside them as they choose to die, offering support — that’s not assisting,” said Final Exit Network lawyer Robert Rivas in Tallahassee, Florida. “All we are doing is expressing our First Amendment right of free speech.”
The California Attorney General’s Office did not respond to requests for clarification.
The group has faced prosecutions in states such as Georgia and Arizona. Although there were no convictions, the states temporarily froze the network’s bank accounts and forced the network to pile up huge legal bills.
Richard Cone of Albany, who has volunteered as a “junior guide” nine times, joined after losing his wife to metastatic breast cancer and visiting elders in hospitals and nursing homes.
As volunteers, “we are present and give advice up to the last moment, to be sure they can carry it out without suffering,” said Cone, who has a doctorate in medical microbiology from Stanford University and teaches anatomy and physiology at Mills College in Oakland.
“One of the biggest services, I think, is to give people peace of mind,” he said. “We help them relax — and enjoy each day as a gift.”
Some of the assisted deaths take place surrounded by supportive family members, volunteers say. One elderly woman with cancer gathered her children, grandchildren and pets for her goodbye, accompanied by home-cooked food, piano music and singing.
Others die alone, hiding their intentions from family, friends and neighbors. Final Exit volunteers are their only witnesses. Some leave letters, but most don’t.
Coppens said it usually takes about 20 minutes for people to die using the group’s techniques, although they slip into unconsciousness quickly. So no suspicions are raised, volunteers may be asked to clean up equipment after the death.
Before anyone is accepted for Final Exit assistance, they must join the organization, be interviewed by a “case coordinator,” submit a written statement of intent, provide a doctor’s statement about their diagnosis and prognosis and be approved by the group’s “medical committee.” Then they are assigned a guide who arranges a home visit. The guide provides detailed information about methods and equipment.
The group says it does not accept anyone with symptoms of depression or mental instability. And anyone can change their mind at any step along the way.
The group’s efforts are agonizing to people like Nancy Valko, who lost her 30-year-old daughter to suicide based on techniques in a how-to book written by the Hemlock Society’s founder.
Valko’s daughter, who struggled with substance abuse, died alone in a hotel room.
“It was not an easy death or a dignified death,” said Valko, a St. Louis nurse who did not want to describe the details. “They make it sound so courageous. It sounds so good. Once you normalize suicide, it begins to look like a positive solution to a problem. Suicide is a tragedy, not a civil right.”
Tim Rosales, of Californians Against Assisted Suicide, contend that the Senate bill would gives “Final Exit and others a pathway to expand any assisted suicide law.”
“Like any potential new law,” he said, “once the snowball begins to roll downhill it just expands in size and scope.”
But Coffens vows to never again feel as helpless as she did when she saw the incontinence of a woman dying of cervical cancer, or the pain of a diabetic amputee dying of infection and inflammation of the abdominal wall.
“It should be different, very different,” she said. “It should be your choice. It should not be anybody else’s choice.”
AID IN DYING
SB 128: The bill in the California Legislature would permit a doctor prescription of a lethal pharmaceutical drug, is available only to those with less than six months left to live and includes supportive services such as hospice and palliative care services. Modeled after laws in Oregon, Vermont and Washington state, the bill would make the process subject to state oversight.
Final Exit Network: This small and loose-knit network of volunteers offers free information, guidance and witness of a death through a nonpharmaceutical method. Not subject to state oversight, the aid is provided not only to the terminally ill but also those who have intractable pain, irreversible physical illness or progressive disabilities such as Lou Gehrig’s disease, Parkinson’s disease, multiple sclerosis, muscular dystrophy, emphysema, congestive heart failure and Alzheimer’s disease.
Organization at www.finalexitnetwork.org
Book/ebook at www.finalexit.org
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The California bill SB 128 is known as a ‘prescribing bill’ (similar to Oregon’s) allowing a doctor to write a prescription for lethal drugs which the dying patient can take at a time of their choosing. Lethal injection is forbidden under this law.