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A teenage girl walks the hardscrabble streets of Richmond, a Bay Area city, rapping about the challenges of drugs, violence—and diabetes.

Here, she says, big dreams are “coated in sugar,” and innocence is “corrupted with Coke bottles and Ho Ho cupcakes.”

She’s performing in a video by a local youth group that counts diabetes—a national epidemic that has hit California hard—as one of the killers in her neighborhood. The disease, which is spreading and driving up health costs, now impacts more than half of the state’s adults, especially people of color and the poor.

Experts say it doesn’t have to be that way—that prevention programs can slow the march of the illness and save money at the same time. But efforts to legislate prevention—for example, taxing the sugary drinks whose consumption contributes to diabetes—have stalled in the face of heavy opposition by the well-funded beverage lobby.

The state will soon begin funding a program for anti-diabetes education, counseling and lifestyle coaching, but it’s a modest investment regarded only as a start.

“Investing more now in diabetes prevention and education will save our state billions of dollars down the road,” said state Sen. Bill Monning, a Democrat from Carmel who has proposed soda taxes in the past, and tried unsuccessfully this year to require warning labels on sweetened drinks.

A UCLA study last year found that 9 percent of adults in California have been diagnosed with diabetes, a chronic condition in which the body does not process sugar well, which can lead to blindness, heart disease, stroke and infections resulting in amputations. Forty-six percent—including about a third of those under 40—are pre-diabetic, with elevated sugar levels that will likely develop into diabetes.

That’s 55 percent of the state’s adult population swept up by the disease.

Treating diabetes costs government, private insurers and patients about $27.6 billion a year in California, for such expenses as doctor visits, testing, medication, surgery and hospital costs, according to the American Diabetes Association. The state and federal governments shoulder most of that expense through Medi-Cal, California’s health program for those living in poverty, as well as the national Medicare system that covers seniors.

A state audit of the California Department of Public Health diabetes-prevention efforts released two years ago said that California lagged in such spending. The state spent about $1 million from the federal Centers for Disease Control and Prevention, a sum that has since grown to $1.4 million, but did not devote state money to programs. New York, the audit points out, was spending $7.2 million, although some of that money went to anti-obesity programs.

Beginning in July, with the next budget, $5 million in state funds will go toward a nutrition and exercise program for pre-diabetic enrollees in Medi-Cal. That project, based on a CDC model called the Diabetes Prevention Program, can cut the risk of developing diabetes in half, according to the CDC. In addition, it is expected to save about $45 million in treatment expenses over the next five years, said Assemblyman Joaquin Arambula, a Kingsburg Democrat and physician who co-chairs a health subcommittee.

Flojaune Cofer, an epidemiologist and director of state policy and research for the nonprofit Public Health Advocates, said that about 25,000 people will be able to participate each year.

“We can’t just wait until people get sick, because it’s not a viable system,” Cofer said.

The largest state pension fund, CalPERs, began offering the CDC program to through its insurance plans this year, and Medicare will offer it nationally next year. It is also offered by some private insurers.

But adult-onset diabetes, or Type 2, doesn’t get the same attention as some other deadly diseases, such as cancer. Nor is it considered as blameless as Type 1 diabetes, a childhood disease diagnosed when the body produces little or no insulin.

Type 2 is considered mostly preventable by changes in diet and physical activity. But its spread has increased 32 percent in California in the past decade, according to state statistics. The disproportionate impact on low-income communities and people of color may partly explain why it gets short shrift, experts say.

“There’s a general belief that it’s slothful, lazy people making bad choices,” said Dean Schillinger, professor of medicine at the University of California, San Francisco; he’s a leading expert on diabetes and prevention, and was chief of the state’s diabetes-control program from 2008 through 2013. “But if you have to choose between buying a fast-food meal for your family of five for $15 or going to Whole Foods and spending $80 on health food, it’s very rational what people are doing.”

Add to those economics the marketing of beverages and snack foods to children, especially through targeted advertising in low-income communities, and you have a natural intersection for the disease, he said. A federally funded study released this year found that diabetes grew at a rate of 4.8 percent among children each year between 2002 and 2012.

“It’s an unacceptable state of affairs,” Schillinger said. “We can and must do something to prevent young people from having an amputation or being blind by the age of 30.”

Diabetes is also increasing among white people, Schillinger noted, just not as quickly. Sedentary lifestyles, fat-rich diets and time spent in front of screens large and small cut across all communities.

Another contributor is a health care industry that has been primarily focused on treatment instead of prevention, said Monning: “Prevention, including diabetes prevention, is not profit-generating.”

He and a handful of other state legislators have been trying to pass measures to slow the growth of diabetes for years, focusing on the role of sugar-sweetened beverages—because they are the leading cause of increased calories in children. The lawmakers’ targets include not just sodas, but also other sugary drinks camouflaged as more healthful: sports drinks, juices and enriched waters.

Monning tried this year to require labels on certain drinks to state that “drinking beverages with added sugar contributes to obesity, diabetes and tooth decay.” Other efforts have involved a statewide tax on such drinks, but that requires a two-thirds vote of the Legislature and has been a hard sell.

The beverage industry argues that the causes of diabetes are complex, involving much more than soda, and that the best way to build strong, healthy communities is to work together to “help people balance their calories and improve their diets,” said Lauren Kane, a spokeswoman for the American Beverage Association.

The group says taxes don’t work, and labels are misleading.

“America’s beverage companies are already helping people cut their sugar intake from beverages through our collective efforts to reduce portion sizes and introduce smaller, more convenient packages with less sugar,” Kane said.

But Monning blames the industry for pushing hard enough—and spreading enough money around Sacramento—to scare off the “yes” votes needed to pass preventive measures. The beverage group has spent $282,000 on lobbying in California so far this year, according to its required reports to the state. The two largest soda makers, PepsiCo and Coca-Cola, have spent about $248,000. And in the last five years, PepsiCo and Coca-Cola have contributed nearly $783,000 to state candidate campaigns, while the American Beverage Association gave $135,000, the filings show.

 There has been a slight decline nationally in the consumption of soda, studies show, although the void may be at least partly filled with other sweet drinks. Experts credit local measures to tax sweetened beverages and require warning labels on billboards that advertise them, among other moves.

Such taxes have been imposed in Berkeley, San Francisco and Oakland. Other cities, including Richmond, have tried and failed to pass them. San Francisco approved a requirement two years ago that certain beverage ads be labeled, but the beverage industry sued to block the measure in a case that is ongoing.

More local taxes and labeling requirements could prompt state lawmakers into action eventually, as plastic-bag bans throughout the state did, said Monning. Once a tipping-point number of cities outlawed the bags, it became easier for the Legislature to adopt a statewide policy.

Schillinger said he has seen firsthand that prevention efforts can stem, or even reverse, an epidemic tide. When he started his medical career, at the height of the AIDS epidemic, half of his patients were dying from HIV infection, he recalls. Within 15 years, that epidemic was pushed back by a combination of grassroots activity, well-funded public health work and scientific research, he said.

“At that time, one out of 15 to 20 of my patients had diabetes,” he said. “Flash forward, and I have no patients with AIDS who are dying. Our AIDS ward is empty. But instead, we have the diabetes epidemic,” and half his patients have the disease.

Schillinger lauds community awareness efforts, like the videos posted by Youth Speaks as part of its diabetes-prevention program. Even armed with statistics and an M.D. degree, Schillinger said, he has participated in too many disappointing policy discussions with lawmakers about diabetes.

“There has to be a different way to talk about this,” he said, “and it has to come from different people.”

CALmatters.org is a nonprofit, nonpartisan media venture explaining California policies and politics.

Published in Local Issues

The metal tab pulls back with a familiar click-click-hissssss as bubbles rush to the top of the can. The alluring scent wafts through the air, a familiar smell that hints at what’s to come.

If you’re drinking a 20-ounce Mountain Dew, you’re consuming the equivalent of 18 teaspoons of sugar. A same-sized Pepsi equals 16 teaspoons, and a Coke comes out to 15. A 16-ounce Rockstar Energy Drink slams more than 15 teaspoons.

Here’s the problem with what you’re drinking, some scientists say: Humans are not biologically designed to deal with that much liquid sugar at once. Since there’s no digestion involved, it enters the bloodstream and is absorbed more quickly than food.

As it does, the sugar overwhelms the pancreas, the organ tasked with regulating blood sugar, and over time wears it out. Welcome to Type 2 diabetes.

Harold Goldstein, a doctor of public health, is the founding executive director of the California Center for Public Health Advocacy (CCPHA), a Davis-based nonprofit whose mission is to look for solutions to what scientists say is an alarming increase in diabetes and obesity in California.

About five years ago, the CPHA commissioned a study by the UC Center for Weight and Health to see if there was a correlation between obesity and sugary beverage consumption.

The UC study found that Americans on average were consuming 278 more calories a day than they were about 2 1/2 decades before, with 43 percent of those calories defined as new beverage calories.

“I had no idea what the answer was going to be, but what they came up with was simple and compelling,” Goldstein says. “I was stunned. It was twice as much as I guessed.”

We weren’t just eating more. We were drinking more. And mostly, we were drinking more sugar, a phenomenon that coincided with the “soda wars” of the ’70s and ’80s, where Coca Cola and Pepsi went head-to-head on television advertising campaigns. It also coincided with an increase in portion sizes: In the ’70s and ’80s, a 12-ounce can was the norm. Now, fast-food restaurants offer 32-ounce cups with free refills.

Another surprising statistic, this from the National Institutes of Health, via Goldstein: A quarter of teenagers, or 23 percent, have pre-diabetes, an increase from 9 percent just 10 years ago.

“These beverages are tricking the body,” Goldstein says. “The pancreas goes wild and the liver says, ‘Look at all this. I’d better save it for a rainy day and turn it into fat.’ There is a cohort of teens that will be entering the health-care system with higher rates of diabetes than ever.”

The grim statistics are why state Sen. Bill Monning, a Carmel Democrat, backed by CCPHA and the Health Officers Association of California, continues a battle with the beverage industry.

On Feb. 11, Monning introduced Senate Bill 203, which would have required a warning label to be placed on the packaging of sugar-sweetened beverages including sodas, sweet teas, sports drinks and energy drinks. The label would have been required on drinks with 75 or more calories per 12 ounces and would read as follows: “STATE OF CALIFORNIA SAFETY WARNING—Drinking beverages with added sugar(s) contributes to obesity, diabetes and tooth decay.”

However, the beverage industry was willing not only to put a lot of muscle and money behind the effort to stop him, but also to try to stop information they deem harmful to their industry from reaching the public—and their efforts paid off on April 29, when the bill was effectively killed by Senate Health Committee. Only four of the nine members voted for the bill; one senator voted against it, with four abstaining.

Last June, on the same day Bill Monning’s previous labeling bill died in the state Assembly Health Committee, PepsiCo spent $2,200 on a catered event for 13 legislators and more than three-dozen legislative staff members from the Latino Legislative Caucus, as the Sacramento Bee reported. Of the legislators who attended, two voted against SB 1000, the previous iteration of the labeling bill.

In 2014, the American Beverage Association California Political Action Committee, also known as the American Beverage Association Strategic Advocacy Fund, spent $11.8 million on various candidates and measures. Of that, $9.24 million went to the successful opposition of a soda tax floated before San Francisco voters. The group also spent $2.43 million to defeat a Berkeley soda tax, which passed despite fierce industry opposition.

The PAC donated $4,100 to Luis Alejo, D-Watsonville, who this year became head of the Latino Legislative Caucus, and the same to the Senate campaign of Ben Hueso, the San Diego Democrat who is vice chair of the Latino Legislative Caucus.

It put $27,200 into Gov. Jerry Brown’s campaign and $3,000 into Attorney General Kamala Harris’, too. It gave $46,000 to the Democratic State Central Committee of California and $10,000 to the California Republican Party.

Fast-forward to this year. The PAC started 2015 with $504,000 in the bank. The spokesman for the Latino Legislative Caucus PAC and foundation, Roger Salazar, is now the spokesman for CalBev, also known as the California-Nevada Beverage Association, the trade association representing the non-alcoholic beverage industry in California and Nevada. The Cal-Nev Soft Drink Association PAC spent $37,371 on various campaigns in 2014, mostly as $1,000 contributions to individual legislators.

In the hours and days that followed Monning’s announcement of his labeling bill, CalBev went on the offensive.

In a written statement, CalBev Executive Director Bob Achermann said obesity and diabetes are more complicated than a warning label. Monning’s bill is “misguided,” and singles out soft drinks while ignoring sugar-rich cupcakes, donuts and processed foods. It’s also riddled with loopholes that will confuse consumers, according to the statement.

For example, the release says, fountain sodas purchased at restaurants with table service will be exempt from labeling. The release also calls out milk-based products like Frappuccinos and lattes, which contain as much sugar and more calories than soft drinks.

Salazar says the industry has taken on an initiative to reduce sugar-sweetened consumption 20 percent by 2025.

“There are ways you can have a collaborative effort, but bills like this seek to demonize an industry with a shocking label when there are other, broader causes to obesity and diabetes we should be looking at,” Salazar says. “It’s about balancing calories, and there’s no question we support programs that educate people about nutrition and exercise.”

But the statement that there could be a collaborative effort came as news to Monning.

“They haven’t proposed any compromises to us that would work for them,” Monning says. “I think we’ve maintained open and cordial conversation. Their position on labeling is: They provide caloric information on the label, and consumers have that at their fingertips.”

Monning acknowledges other sources of sugar are out there, but says none are as dangerous.

“While sugar is in other foods,” he says, “medical evidence is clear that liquid consumption of sugar is more immediately damaging. When you eat it, more is eliminated through digestion.”

A version of this story first appeared in the Monterey County Weekly.

Published in Politics

The call comes on your cell when you least expect it. The doctor, a specialist from out of town, says: “The telephone isn’t the ideal way to deliver test results, but ...”

You urge him to proceed. He tells you about your brain cancer.

It has metastasized with a vengeance. His words are both shocking and anticipated. You know you are hearing your own death sentence.

You have fought valiantly for years to be rid of this disease. You’ve endured the onslaught of surgery, radiation and chemotherapy. Your loved ones rallied in support. You’ve done everything you can to continue living fully. Now, you find yourself at a new stage, with six months to live. You’re aware that people who die with your disease may face distressing events before the end: seizures, loss of functions, dementia, anguish and undeniable pain.

What are the options in this hypothetical?

In California, you could choose ever-more-aggressive interventions in the unlikely hope of a cure. You could green-light a medical trial and perhaps extend your life, while aiding science. You could choose palliative care and hospice, in the unassailable theory they may provide you a gentler exit. You could even exercise your right to refuse food and drink, a difficult path that leads to death in seven to 10 days.

Or you could move to Oregon. There, you would have an extra option: You could choose to end your own life, at the time and in the place of your choosing, with legally prescribed, fast-acting barbiturates provided by a doctor.

As of right now, this final option is illegal in California. In fact, your loved ones could face criminal prosecution if they helped you do so here.

But all this may be changing.

On Jan. 21, state Sen. Lois Wolk announced legislation that would bring an “end-of-life choices” law to California. The law would be fundamentally like Oregon’s 1997 Death With Dignity Act—requiring an adult patient to have residency in the state, and two doctors in agreement that he or she has less than six months to live, as well as full mental competency. Other safeguards Wolk referred to as “crucial”—for both patients and physicians—will also be folded in.

“It’s time,” she said. “No one should have to go through horrific pain and prolonged suffering when the end is clear.”

A longtime advocate for more compassionate end-of-life scenarios, Wolk authored a groundbreaking 2008 law that provides seriously ill patients with a new mechanism—Physicians Orders for Life Sustaining Treatment, or POLST—to ensure that their wishes are honored regarding end-of-life care. But Wolk, the state senate’s new majority whip, will likely face a tough battle this time. The right-to-die subject has been exceedingly controversial when it has come up in California’s past.

So why introduce it now? Because of Brittany Maynard, the 29-year-old East Bay newlywed who, after being diagnosed with late-stage brain cancer (glioblastoma multiforme) last spring, became the face of a movement when she chose to relocate with her husband to Oregon so as to end her life under that state’s Death With Dignity Act.

“Doctors prescribed full brain radiation,” she wrote in an essay for CNN. “The hair on my scalp would have been singed off. My scalp would be left covered with first-degree burns. … My family and I reached a heartbreaking conclusion: There is no treatment that would save my life, and the recommended treatments would have destroyed the time I had left.”

Young, attractive and articulate, Maynard’s passionate defense of her right to leave life on her own terms went viral. Her YouTube video drew 13 million views. Her saga was written up in hundreds of newspapers and appeared on the cover of People magazine. Maynard partnered with the nation’s premier “aid in dying” nonprofit, the Denver-based Compassion and Choices, and triggered an outpouring of new energy and funds to its cause.

Ultimately, the sympathy generated by Maynard’s story pushed the “death with dignity” movement forward in ways the country is just starting to see play out.

A month after Maynard’s November death, the already substantial public support for “death with dignity” took a significant bounce. A Harris Poll found that 74 percent of American adults now believe terminally ill patients in great pain should have the right to bring their lives to a close. Even “physician-assisted suicide”—a term controversial in right-to-die circles—now has a 72-percent favorable rating.

“I think (Brittany Maynard) deserves a lot of credit for being willing to be so public about her dying,” said Wolk, who said the young woman’s story was “very much” part of why she and co-author state Sen. Bill Monning chose to the introduce legislation, Senate Bill 128, now instead of later.

“People were very moved by her story,” said Wolk. “It struck a chord.

“To be forced to set up residency outside California to relieve your self from suffering? That’s not right.”


'THINGS CAN REALLY GO WRONG'

With her short brown hair, eloquent eyes and gracious smile, Jennifer Glass (right) welcomed me into her San Mateo home, ushered me to a seat in front of a cozy fire by the Christmas tree, and handed over a cup of steaming coffee.

The warm environs seemed to alleviate the difficulty in speaking openly about the topic at hand: Glass’ late-stage lung cancer and statistically probable decline, and death, from the disease.

A formidable communications professional during her working career—with stints at Oracle, Intuit, Sony and Facebook—Glass married the man of her dreams, Harlan Seymour, in August 2012. They settled into family life. Four months later, while giving her a back rub, Seymour found a lump on her neck that felt “like little peas in a row.”

Glass was soon discovered to have Stage IIIB lung cancer (not smoking-related) that had metastasized to the lymph nodes in her neck. At the time of her diagnosis, the American Cancer Society estimated the likelihood of her five-year survival rate at just 5 percent. The then-49-year-old underwent radiation and two aggressive rounds of chemotherapy, causing her to lose her thick brown hair.

Her cancer is, thankfully, now in a period of “treated containment.” She takes the oral chemotherapy drug Tarceva daily that allows “two to three good hours” per day, she says. The efficacy of Tarceva tends to be two to four years before cancer mutates around it.

Glass, who developed a following for her YouTube video “A Photo a Day: One Year With Cancer” and for blogging about her disease on The Huffington Post, has strong beliefs about how she wants to go when her time comes.

“I believe I should have the legal choice to end my life calmly, peacefully and with dignity,” she said.

Like Maynard, the tech-savvy Glass wants to bring the right-to-die debate to a generation that’s become accustomed to making its own choices when it comes to certain issues. “It’s like what we’ve seen with gay marriage,” she said referring to the sea change in public opinion and policy on that issue in a short time span. “There’s a greater desire for personal choice ... and quality of life. And that has to include end of life.”

When first diagnosed, Glass contacted Compassion and Choices—which was largely responsible for creating and passing Oregon’s Death With Dignity Act. She sought advice and counsel. A volunteer came to her home and explained advance-care directives, POLST forms, the role of hospice, and what was and wasn’t legal in California when it comes to the end of life. Glass, who had been an advocate on the right-to-die issue even before her diagnosis, was thankful to have that information going into the physical and emotional fight of her life.

After her marathon cancer treatment was completed, Glass contacted Compassion and Choices a second time and asked how she could help their effort to make aid in dying legal in California.

She is unapologetic when explaining why hospice and palliative care alone are not sufficient to calm her fears.

“There is some exceptionally fine hospice care,” she said, “but it’s a spectrum. Sometimes it’s simply not possible to eliminate or manage a dying person’s pain.”

People like Glass don’t much like the word suicide—as in “physician-assisted suicide”—imprinted over the right-to-die option. Suicidal people are sad or depressed and want to die, she said. “I’m doing everything I can to live! But I want control over my death if it’s going to go in a really ugly way.”

She and others suggest “aid in dying” or “death with dignity” as alternative word choices to “physician-assisted suicide.”

Glass admitted to a kind of black market that exists in states where physician-assisted dying is illegal. “Since becoming part of the cancer community, I’ve known people who are doing whatever they think it’s going to take to end their lives when they want to, including hoarding pills. That can be dangerous if it's not managed.

“It’s the fear, the fear about how this is going to end.”

In her own case, Glass is frightened by the possibility she may be forced to “drown in my own lung fluid in front of my family in my final days. … My quality of life in whatever time I have left would be vastly improved if I knew (a legally prescribed lethal drug) was an option for me under the law.

“If my life is not tolerable, if I’m racked with pain, if I can’t control my functions, if my system is failing … and I have no recourse? That’s the worst thing I can think of—because things can go really wrong.”

If her disease runs its course, Glass says she knows what it would take to move to Oregon and, like Maynard, take the steps necessary to be approved for self-administration of a lethal prescription.

“But I really hope it doesn’t come to a decision where I have to leave my home,” she said. “Particularly because if it comes to that, it’s a decision I’m going to have to make when I’m already very sick.”


'WE’RE DETERMINED TO DO IT'

Toni Broaddus entered a café near the Capitol in Sacramento, primed for her first in a long string of meetings scheduled that day with legislators, staffers and local officials. It was Nov. 19, 2014—the date would have marked Brittany Maynard’s 30th birthday.

“Brittany’s story really galvanized the movement,” said Broaddus, an attorney and social-justice advocate who now directs Compassion and Choices campaign in California. “Her story has really moved us forward in ways we never could have predicted or expected. We have seen a huge increase in supporters, in donors, in volunteers.”

Broaddus, previously a leader in the state’s marriage-equality movement, said Compassion and Choices has set a goal of having California join the five other states in the country—Oregon, Washington, Montana, Vermont and New Mexico—that have legalized aid in dying. The group plans to assist in the passage of California legislation or mount a grassroots effort to get the matter put before voters in 2016.

Such efforts have failed in the past. Attempts to legalize assisted dying in California have been beaten back many times over, thanks to fierce opposition from organizations like the Catholic Church, with its moral authority, and the California Medical Association, with its well-financed lobby. In 1992, the statewide ballot measure Proposition 161 went down, getting just 46 percent of the vote.

The most recent legislative attempt before SB 128, Assembly Bill 374 by Assemblywoman Patty Berg, was taken off the table for lack of support at the end of the 2007 session. Famously, the bill had preachers speaking out in opposition from the pulpits in California. Then-Assembly speaker Fabian Nunez actually described getting a call from his church-going mother at that time, urging him to reconsider his support for the bill.

The powerful California Medical Association is predicted to oppose again this time, though a spokesperson said the group hadn’t yet taken a position on new legislation. The organization, which officially represents just 30 percent of the state’s physicians, has claimed before that assisting in a death is in conflict with a doctor’s ethical responsibility to “do no harm.” Also, the doctors’ group holds that most pain at the end of life can be controlled through medication and comfort care in a hospice environment.

However, a recent poll of 17,000 American doctors by Medscape found that, for the first time, a majority of physicians support “death with dignity” for those with “incurable and terminal” disease.

Also expected to oppose Wolk’s legislation are some in the disability-rights community, who say such a law could open up the potential for abuse by insurers or family members. Patients might be pushed to an early death for the convenience of others, they say. In response to the groundswell of media on Maynard’s story, Disability Rights Education and Defense Fund senior policy analyst Marilyn Golden wrote: “For every case such as (hers), there are hundreds—or thousands—more people who could be significantly harmed if assisted suicide is legal.”

Broaddus disagrees, based on 17 years of data from California’s neighbor to the north. “People talk about concerns about abuse for vulnerable populations,” she said. “But the reality is, that hasn’t happened in Oregon.”

For her, California’s lack of a law simply doesn’t make sense. “It’s hard to understand given the support in the state and the state’s usual leading role on this kind of social-justice issue.”

For Assemblywoman Wolk, the fate of the bill will depend, in part, on individual legislators’ own personal experiences with death and dying.

“More and more people have had a personal, intense experience with dying—either a relative or a friend … and they want it to be different, they know it should be different,” she said.

The legislator pointed out that the Oregon law “is broadly accepted and not that heavily used,” with about 60 percent of the people who obtain a prescription ever actually taking it.

“It’s a comfort for people to know that if it got really bad, it’s there,” she said. “That seems to make people feel better. Just having it is enough.”


'YOU’RE SCARED AND STRESSED'

Barbara and Doug Wilson met in 1967 while residents in the first co-ed dorms at UC Davis. They fell in love, married, launched careers and raised two daughters, never once leaving the safe haven provided them by the city of Davis.

In 2004, Doug, age 57, was diagnosed with Stage IV colon cancer. At first—thanks to two rounds of surgery and chemotherapy—his disease went into remission. But in 2007, the cancer returned. With Barbara constantly at his side, he spent the next five-plus years in and out of infusion rooms, clinics, radiation centers and hospitals, undertaking every treatment and intervention doctors recommended to help save his life.

“He was amazing,” said Barbara of her husband. “He had the most positive attitude. He did not want to die.”

In the spring of 2013, the couple chose to enter hospice care, more than anything because it would get them access to equipment—like a battery-operated oxygen tank—that would help Wilson attend his daughter’s April wedding in Santa Cruz. “Doug walked my daughter down the aisle,” said Barbara, choking back tears. On morphine for pain, he gave his father-of-the-bride speech and, she said, “did the father-daughter dance.”

By the following Friday, he was gone.

Barbara, now 66, looks back with some unease on her husband’s death process those last five days of his life. “The image of a wonderful, peaceful end of life with loved ones around … well, that didn’t seem to happen,” she said.

Home hospice provided qualified people checking in once a day, she said, and availability in emergencies. But basically, she felt left to her own resources, in the company of her two daughters and son-in-law, without experience or knowledge in how to attend to a dying loved one.

“I think it’d be the same with any hospice,” she said. “You’re scared and stressed because this is your loved one. You don’t know what to do.”

She described her husband as on-again, off-again agitated—he was bleeding internally, with his liver shutting down. “We felt we were incapable of dealing with him properly,” she said. She described frustration at her inability to help make him comfortable. She feared his pain and what would happen if she gave him too much—or too little—morphine.

Eventually, in a hospital bed in the living room with his family surrounding him, her husband took his last breath. But the day-by-day countdown to Wilson’s end remains a fairly traumatic memory.

The Wilson’s story illuminates the reality that the actual process of dying can take time and be upsetting, confusing and painful for both patient and caregivers.

Though Barbara believes her husband would not have chosen to take his own life at the end even if it had been legal, she now believes that people should have a right to that option.

“Until you walk in those shoes, you just don’t know. … When it’s my time, I do not want to suffer,” she said, “especially after watching Doug.”


‘WHY IS IT SO HARD?’

Why is it so very difficult for modern society—with its medical aptitude, technological advantages and ability to fulfill desires—to succeed at delivering a “good death” when it is something most everybody wants?

In his recent best seller Being Mortal, Atul Gawande takes a stab at an answer by laying out the limits of medicine and the inadequacies of medical school in preparing physicians to help patients deal with the stark reality of death.

Doctors have been trained to find cures and “to win,” he writes. This simple fact—along with an American health-care system that seems to encourage excessive treatment—continues to make a peaceful death an elusive goal for many people.

For example: Though most people want to pass away at home surrounded by loved ones, 70 percent die in a hospital, nursing home or long-term-care facility after a long struggle with advanced or incurable disease.

Marge Ginsburg, executive director of the Sacramento-based Center for Healthcare Decisions, and a noted advocate for better end-of-life outcomes, has spent the last two decades pushing for more compassion for patients as they near death.

“You’d think 20 years later, we’d have gotten this solved,” she said. “But no, we haven’t.”

Ginsburg, whose nonprofit organization won’t be taking a position on the new Death With Dignity legislation, reminds that California’s end-of-life problem is much larger in scope than the debate over one potential last-resort option. The importance of advance-care directives and the ongoing push for family members, physicians and patients to have candid conversations before crisis hits can not be overstated, she said.

“The ICU is not the time to start finding out what your family members want,” she said.

Still, some see a shift occurring in the end-of-life landscape—perhaps because members of an aging baby-boomer population have begun to see their final acts in sight. Indeed, more doctors are now being trained in palliative care, which focuses on pain relief over cures for terminally ill patients. Also, there’s an increased use of advance-care directives and POLST forms as well as an uptick in the number of individuals dying in hospice care.

Meanwhile, over to the side, is the more controversial subject of a California law that would allow people who meet its dire criteria to self-administer lethal prescription drugs.

Could a shift be occurring there, too?

Wolk believes the answer is yes.

“It’s changing,” she said. “We have to learn. Doctors have to learn. At the end of life, there is a range of things that can happen. We haven’t wanted to think about that. We haven’t wanted to talk about that. But it’s time.”

Those who followed Brittany Maynard’s story this past year—with its tragedy, awareness and resolve—might tend to agree with Wolk that things have to change.

Like Maynard, Jennifer Glass seems utterly brave and self-aware as she moves forward and, despite her disease, attempts to live a full life regardless of the harsh lesson mortality threatens to teach her.

“I feel fine now. But any minute, things could go a different way,” she said. “My great hope is that, in the next 12 to 24 months, if my disease runs its course, then I will have the legal option to procure prescribed medicine and end my life, by my own choice, by my own hand, legally, in my own home.”

And then, as if preparing for an upcoming debate, Glass posed a question to an imagined opponent of a California end-of-life choices law: “Nobody’s saying you have to do this if you don’t want to do it. But who are you to say that I can’t?”

This story originally appeared in the Sacramento News & Review. Below: Brittany Maynard on her wedding day in September 2012, before her January 2014 diagnosis. PHOTO BY TARA ARROWOOD

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