Christie White and Dan Swangard are fighting to live – and also fighting for their right to die: peacefully, at home, surrounded by those they love.
Kathryn Tucker and Nico van Aelstyn are now taking that fight to the Superior Court of the State of California; and it will be a fight worth watching.
Tucker, a distinguished attorney now serving as the executive director of the Disability Rights Legal Center, has already led a number of such battles for peace at life’s end, including defense of the Oregon Death With Dignity Act several times in the early years of that now 18-year-long success story. van Aelstyn has a similarly notable record and an award-winning history of pro bono work on end-of-life issues. Many supporters of end-of-life choice, including this writer, are optimistic about the potential outcome.
But court battles aren’t settled overnight, and White and Swangard know they may not have a lot of time left.
“My mother will tell you,” White remarked during the press conference announcing the lawsuit, “that from the time I took my first steps I wanted to be in control. I want to be in control. I am adamant about not wanting to die in a hospital, but at home, surrounded by my family. I want to be able to gather my loved ones and meet my death with some dignity and peace of mind.”
Since first diagnosed with non-Hodgkin’s lymphoma and then acute myeloid leukemia or AML Leukemia more than five years ago, White has undergone chemotherapies, radiation therapy and a bone marrow transplant. Because of those prior interventions, her medical options would be severely limited should her leukemia recur.
Dan Swangard, MD was diagnosed with tumor of the pancreas, with metastatic disease to the liver, and had major surgery in 2013. “Not to state the obvious,” he told the press, “but dying is something we all do. It can be loud, quiet, filled with anxiety, pain and suffering, at home or on the road. It can also be peaceful, filled with connections to people we love the most – if planned.”
Swangard has practiced medicine for 22 years. He has also served as a volunteer with Zen Hospice and at Laguna Honda Hospital in San Francisco, experiences that add to his own understanding of what a good death can be.
This lawsuit is about the possibility of a good death for everyone in California. Christie White and Dan Swangard are two good Californians who deserve such an option.
Is there a constitutional right to “physician-assisted suicide”? What about a “dignified death” – and what is a dignified death? Should terminally ill patients facing mental incapacitation or unbearable pain have access to fatal ingestion – also known as physician aid in dying? Or would that jeopardize our society’s progress toward more compassionate, comfort-based care?
Participants included John M. Luce, Emeritus Professor of Clinical Medicine and Anesthesia at the University of California San Francisco; Laura Petrillo, MD, a Hospice and Palliative Medicine fellow at UCSF; and program host David L. Faigman, Professor of Law at UC Hastings College of the Law and Director of the UCSF/UC Hastings Consortium on Law, Science and Health Policy.
The program kicked off with a discussion of the science of death itself – defining death being more and more problematic these days. Think Nancy Cruzan, kept alive through a feeding tube in a “Persistent Vegetative State” for nearly a decade until her family managed to convince the State of Missouri that she would never have wanted to be “kept alive.” Or Terri Schiavo, whose PVS ordeal lasted even longer. More recent is the tragic story of 13-year-old Jahi McMath, declared brain-dead by multiple physicians more than a year ago but whose body is still existing somewhere, connected to machines that keep her heart beating.
Those cases are just a few of the markers on the path toward today’s critically important death with dignity movement. This writer’s involvement in the cause began with work as a hospice volunteer in the 1980s, a member of an HIV support group in the ’90s and a volunteer with Compassion & Choices (and its predecessor organization Compassion in Dying) since the late 1990s. C&C is currently leading the fight to make aid in dying legal throughout the U.S., having won significant battles – five states now protect that right for terminally ill, mentally competent adults – with others underway in many areas.
And that issue – should medical aid in dying be legalized in California (and elsewhere) – was the heart of the two-hour program. Of the two physicians, Luce was eloquently in favor, and Petrillo was adamantly opposed. In this writer’s admittedly biased view, Luce’s lifetime of experience as a distinguished physician and professor rather embarrassingly outweighed Petrillo’s credentials, but it is possible to see her emerging-palliative-care-physician status as basis for her absolute certainty that everyone on the planet can experience graceful, pain-free death if only he or she has access to palliative care.
I am less certain. Thus my argument.
In the Q&A period, I posed this question to Petrillo: “If you were my doctor, which is unlikely, and I were dying, which is increasingly likely (I’m 81, for heaven’s sake,) and I have expressly, repeatedly made clear that I do not wish to linger – why should you have the right to insist that I linger?”
Petrillo dodged the question. “I would ask what is causing your pain,” she said. “I would try to determine if you are depressed, and talk about how we can alleviate your pain and possible depression…”
After several abortive attempts to get a response to my question, and figuring the audience had not paid good money to listen to me rant, I gave up. But here are the arguments I had for Dr. Petrillo, questions I wish the minority of physicians who do still oppose aid in dying would answer:
Why should you have the right to insist that I linger, when I am dying?
How can you presume to understand my pain better than I? And why should I have to describe it if I don’t choose to do so?
When I have watched dying people with the very best care and pain control suffer in ways I would not choose to suffer, how can you insist on my going that route?
Why should your conviction about the efficacy of your medical field trump my autonomy?
Dr. Petrillo said she is not religious, so this question would be addressed to others: Why should your religion overrule my religion? Or dictate to me?
It’s my only precious life, after all. Why should I be denied control of its precious end?
“Something there is that doesn’t love a wall,” wrote Robert Frost, and I think he was onto a larger truth. Of course, Frost – in his “Mending Wall” – was talking about rocks and neighbors, and the poem leaves us with ambivalence about the goodness of fences.
Fences and walls may, at times, make good neighbors – but the big ones tend to be symbols of enmity (think Berlin, Israel, Arizona…) and we just want them down.
A few months ago a high, dark fence went up around lovely Mountain Lake, in the San Francisco park that is one of my favorite spots on the planet. It’s a city park, but the lake (fortunately for us all) is part of the Presidio National Park and has been undergoing an extraordinary restoration for the past few years. It may not yet be back to the purity that made its water just fine for Spanish settlers (and probably the Ohlone and Coast Miwok indigenous people before them) to drink, but years of accumulated glunk, trash and sludge have been hauled away and the lake’s return to life has been a rare joy to watch.
The problem? Although the waters began to clear and native greenery emerged, a proliferation of non-native fish were quashing any hope of bringing back the fish who once belonged. We’re not talking just a couple of ordinary intruders. It was possible to stand on the beach near the murky water’s edge and watch goldfish the size of ahi tuna swimming casually back and forth. With native fish and turtles long displaced by casually dumped household pets, the lake was overrun with carp, bullfrogs – somebody reported a sturgeon – and who knows what else. This writer remembers the brief residence of an alligator, who famously evaded a gator hunter imported from Florida but was eventually removed to the local zoo.
Presidio Trust personnel tried snagging, netting and every known removal method before conceding that the only solution would be to poison the lake. They chose plant-based Rotenone, which kills everything with gills (and happily not much without) and disappears within three days. Thus the fence went up – presumably it was still not a good idea for gill-free people to be wandering near the water. Almost the moment the solution was poured into the four-acre lake, the alien fish died. They were scooped up by the thousands to be studied by ecologists (who reluctantly went along with the project) to determine their origin and soon composted as a final act of goodness. But the fence, for assorted reasons, did not come down.
And over the long weeks that followed it was as if the park itself was inhabited by an alien being. Children still played on the adjacent swings and slides, dog walkers still tossed tennis balls, this writer still exercised on the bars of the fitness trail – but the now-sparkling lake was hidden behind its foreboding shield. Even when the gulls could be heard returning beyond the black screen, and actually seen if you peered through the mesh, the park felt bifurcated and somehow forlorn. Thanksgiving came and went, Christmas was less merry, the New Year not yet happy.
A few days ago, the fence came down. Mountain Lake, the shimmering heart of Mountain Lake Park reappeared, putting on a show of new life. A few familiar ducks may never have left; now they have been joined by coots and grebes and a spiffy ruddy duck who is apparently courting two slightly less flashy lady ruddy ducks. Western pond turtles, chorus frogs and native fish will begin to return in the spring.
The metaphors are abundant: fences come down, sunlight spreads from reflected waters, varied creatures happily coexist, romance blooms.
The holiday-week news in review was a doozy. Good news (to most of us) about Cuban-American relations and climate change, bad news for Sony and internet security. Plus the relentlessly ongoing bad stuff: ebola killing off entire families in Africa, terrorists killing children in Pakistan, crazies killing innocents, and a total absence of politicians able to do much besides calling other politicians names.
It was all up for discussion during a recent “Week to Week” political roundtable discussion at the Commonwealth Club in San Francisco. Panelists included San Francisco Chronicle political reporter Joe Garofoli and columnist C.W. Nevius, and writer/attorney Melissa Griffin Caen, along with moderator John Zipperer, Vice President of Media & Entertainment for the Commonwealth Club. Despite the unfunny bad news, the group had a seriously good time dishing about Uber executive Emil Michael – and why not? Set aside the fact that his company sought to make good news (Everybody wants rides! Raise Rates!) of the hostage tragedy in Sydney, Australia, Michael first endeared himself to the fourth estate by launching a campaign to investigate unfriendly journalists. Then came the news about his suit against his landlord for sending a stranger repairman into the apartment to fix something Michael himself had complained of. Throw in Michael’s claim of being buddies with the police chief (quickly denied by the police chief,) the condo cost ($9,500 per month) and its reported amenities such as hot tub and private garden, and it’s altogether too much for any political roundtable to resist.
But the evening opened with good news. Salesforce founder/CEO Marc Benioff, the panelists say, is making news with his 1/1/1 integrated philanthropic model. One of the founding principles of Salesforce, the idea is to give 1 percent of profits, I percent of equity and 1 percent of employee hours to charity. For months, Benioff has been working to bring other tech firms into the plan, and it’s working. Often at odds with their new San Francisco community, tech firms and their employees are increasingly giving their time, talents and money back to help the less fortunate. And who knows? The bad will generated by the likes of uber-rich Uber folks could be outweighed by the goodwill of 1/1/1 programs.
Closer to home, or at least to the heart of this non-techie writer, my friend Tara Culp-Ressler over at ThinkProgress.org posted a similar good news/bad news piece about the year of reproductive justice: “Six victories for reproductive freedom you may not have realized happened this year.” At the end of a year crammed full of legislative assaults on women, with newly-empowered anti-abortion lawmakers vowing to take us back to the dark ages – here is good news worth noting.
Andrew Young wants you not to worry. Despite humankind’s failure to solve the problems of poverty, racism and inequality, and the smaller issues that cause us to despair, Young tells his listeners that a benevolent creator has everything under control. He offers this assurance in the biblical words of his grandmother …. “Don’t be anxious about tomorrow… Consider the lilies of the field; they toil not…” and after a few more verses that roll easily off his tongue he adds with a beatific smile, “You don’t have to be a believer to know that sounds good.”
Young was in San Francisco recently, drumming up support for world peace, justice, compassion and his Andrew Young Foundation. In an informal – “You don’t mind if I just sit in this comfortable chair instead of standing at the podium?” – talk at the Commonwealth Club, his remarks ranged from theories on how to make the world work to why prisons don’t.
Just a few of those random thoughts include the following:
Re dealing with the bad and the angry: “Don’t get mad, get smart.”
Re getting smart – one of the first things Young did after being elected Mayor of Atlanta in 1981 was to increase the percentages of blacks and women in the police department, in order to insure that it reflected the population of the city. A story about how well that worked in one instance delighted his 2014 audience:
Anticipating two or three thousand people for a Ray Charles concert in Piedmont Park, the city sent a contingent of a dozen police officers to look after the crowd – but the crowd turned out to be over 100,000. “Ray Charles said he wasn’t going out there,” Young recalled. “He said, ‘I’m blind, but I can see there’s people pushing against the stage and I ain’t going out there.’ And we had a dozen police officers to handle 100,000 people.” Enter one of the police contingent, “a tiny little woman named Sadie.” Sadie mounted the stage, blew her whistle, got the crowd’s attention and told them they were going to play a game. “You all know about Simon Says? Well, this is Sadie Says.” When she blew her whistle, she explained, everybody on the front row was to turn around and face the opposite direction. When she blew it again, everybody on the next row was to turn around… and so on. By the time Sadie finished blowing her whistle, the entire crowd was facing away from the stage. “Now,” she said, “everybody take ten steps forward.” The crowd surge was ended, the concert went on as planned.
Re prisons: “You go to prison for taking money from an ATM; you come out knowing how to take the ATM.”
Re global peace and prosperity: There are “ways to make the world work,” Young believes. Because food and jobs are two of the keys, his foundation is pushing programs to make protein from duckweed in the south. Small farmers could be back in business, the hungry could be fed.
Young is almost as enthusiastically pro-duckweed as he is anti-Halliburton. “We don’t need to be fighting ISIS,” he says; “that’s Halliburton’s war. You want to go after people for not paying taxes? Go after Halliburton.” And as to those wars, “One of the things we should know by now is that there is no military solution.”
How can we find lasting solutions to issues like poverty and war? Young says, “I don’t know how to do it – but our kids will know how to do it. I was in a restaurant where a two-year-old had his iPad out and said, ‘Mom! They don’t have wi-fi here!’ — but a few minutes later he said, ‘That’s okay Mom, I fixed it.’” Young urges audiences of all ages to work for peace and justice, acknowledging both the enormity of the tasks and the potential for success. And in the end, he says, “We just have to believe we’ve done the best we could.” You don’t have to be an Andrew Young believer to know that sounds good.
Sacramento Mayor Kevin Johnson, host of the recent event, asked Young which of his titles he preferred: Mayor, Congressman, husband, father, CEO, Ambassador…? The reply came with another quick smile.
Maluki had what she thought was a minor infection in her chest. She took a couple of pain relief tablets. She is undocumented and uninsured. She had no access to a community clinic where she might have seen a doctor with no questions asked; no one in her suburban family had heard that such things exist. Within a few weeks Maluki was doubled over with pain and was rushed by a neighbor to an emergency room at a major public hospital two hours away.
Two surgeries later the 38-year-old mother of three will be out of work for a very long time. Her husband, partly disabled, works irregular hours when he can, leaving the family dependent on what money the teenaged children – all U.S. citizens – can bring in. The children still hope somehow to finish high school and attend college.
There are, by one estimate, 11.7 million undocumented immigrants in the U.S. Some have health coverage through their jobs, and a few have private coverage; but the vast majority of these are uninsured. The resulting costs, in human terms such as the case above, are inestimable; the costs in dollars are also significant. “If we get the patient into basic care for colds and flu,” said Gressman, “we save thousands in hospital care.” In California, care is widely available through publicly funded community clinics as well as nonprofits – the problem is in getting the word out and building trust. “We look at how to get the patient to care,” Hauge said, “not at anyone’s immigration status.”
While Gressman, Hauge and Lucia each brought extensive understanding of both the policy and the real-world details affecting healthcare needs of undocumented immigrants, it is the personal stories of Lucia and Latthivongskorn that illuminate the remarkable richness of our immigrant nation.
Nearly a century before she was invited to bring her expert knowledge to a Commonwealth Club panel, Laurel Lucia’s great-grandfather was a frequent speaker at the Commonwealth Club himself. Felipe N. Puente was memorialized in the Club’s Journal upon his death in January, 1951. He was, his obituary reads, “by far the most important personal tie between Northern Californians and the Republic of Mexico for nearly a quarter of a century.
“Commencing as a colorful revolutionary Mexican leader in 1917 (as Jefe de Transportacion for the late Revolutionary General Francisco Villa), he had for 25 years been a resident of San Francisco, with five children in our public schools, and the long-time Manager of the Mexican National Railways, San Francisco division, in the Monadnock Building.
“Although a railroadman by profession, his expert and sagacious advice was freely at the service of American travelers by sea, highway or air, and a letter from ‘el Puente de San Francisco’ (the San Francisco Bridge) as he was affectionately known clear down to the border of Guatemala, opened all doors in Mexico.” Great-grandfather Puente’s expertise reached beyond transportation to government affairs. In a Commonwealth Club speech broadcast over KYA Radio in 1942 he spoke of the importance of Mexican-American cooperation in the war efforts, citing cargo lanes and Mexican ores that were critical to the U.S. and quoting President Avila Camacho as saying, “Mexican soldiers are willing to shed their blood anywhere in the world where they may be needed.” His Journal obituary began and ended, “Adios, Amigo Felipe N.Puente!”
Lucia missed out on knowing her notable ancestor, “but I was quite close to his daughter, my grandmother.” She had not, she says, ever made any connection between his immigrant status and her current work – as a Policy Analyst for the UC Berkeley Labor Center – which partly seeks to strengthen the safety net for those more recently arriving on our shores.
Laurel Lucia with Moderator Weintraub
As for the other young person on the “Undocumented and Uninsured” panel, Jiryat New Latthivongskorn (hereafter identified by his familiar name, New) confesses to having been a little startled to hear himself constantly referred to during the evening as “the first undocumented student to be admitted to UCSF (the University of California San Francisco) Medical School.” But that is, in fact, part of his current resume, and a not insignificant achievement.
There were 7,453 applicants to UCSF Medical School for New’s class, out of which pool 490 were interviewed and 149 were accepted. The overall grade point average was 3.77.
New Latthivongskorn came to this country with his parents when he was 9 years old. His parents worked in Thai restaurants every night until 11:00. But whenever he tried to help, he said in an interview on KQED Radio last May, “the answer never changed. ‘Don’t worry, and do your job.’ My job was to get an education.” So far, he appears to have done his job quite well. New never considered the idea of being a doctor until one scary incident during his junior year in high school when his mother fell gravely ill and had to be taken to the emergency room. The family had, until that time, relied on a medicine cabinet full of remedies for colds and pain and a few old antibiotics from Thailand. But in the ER, when his mother couldn’t understand the doctors and they couldn’t understand her, New realized his job might be more than just a translator.
There are those, including a few who commented on the KQED program, who argue that anyone who is in this country illegally should simply be sent back to wherever he or she came from and until then should receive no benefits – and certainly no healthcare. That may, however, be an overly simplistic – not to mention cruel and unusual – answer to a very complex issue.
“Immigrants don’t come here,” New told the Commonwealth Club audience, “for free healthcare. They come here to escape danger or terrible conditions; they come here to work.” In short, to create a better life for themselves and their families, and ultimately to give back to the communities of their new world. That was definitely true for immigrant Puente a century ago, and is demonstrated by the hard-working parents of doctor-to-be New.
Other than the Native Americans who pre-date most of us, it would be hard to find many U.S. citizens whose ancestors didn’t have similar stories.
“It’s not happiness that makes you grateful,” goes one of my favorite recent quotes (thanks, Joann Lee;) “it’s being grateful that makes you happy.”
Here’s to gratitude.
For one thing, it has been raining in San Francisco. That strange wet stuff that falls occasionally from the sky – but we haven’t seen in a very long time. A planned Commonwealth Club Waterfront Walk tour, which I had earlier volunteered to help host, was advertised “Rain or Shine;” and as it happened there was both. The rain dampened all streets but no spirits, and the beauty of the waterfront literally shone.
There is something mystic about a waterfront on a dark day: an ethereal quiet hanging just below the clouds, the call of a gull who could be from another world, the scent of newness.
The waterfront in sunshine is brilliant and exciting; in rain it invites your imagination – and appreciation.
As with waterfronts everywhere, San Francisco’s is steeped in history: sailors and conquerors, longshoremen and adventurers. There is public art, and private beauty. Waterfront Walk guide extraordinaire Rick Evans covers a remarkable range of them in two hours:
The rise and – literal – fall of Rincon Hill, once one of San Francisco’s famous seven, which overlooked the Bay until the city unwisely bulldozed a street through it in the 19th century and the sandy hill collapsed upon itself. (Earthquake and fire finished the job.) Today Rincon Hill is rising again, as gleaming steel towers. The buildings that survived earthquake and fire are other centerpieces of the walk, plus the monumental artwork on the waterfront that was a trade-off for Gap tycoon Don Fisher’s corporate headquarters building when it went up – insurance of unobstructed, breathtaking views.
Some of the beauty of many waterfronts, physical and informational, is manmade, as is true of this piece of San Francisco Bay. But every waterfront has its story, and its soul.
Deep within the contract I signed for a recent $699 purchase were these words:
Arbitration Agreement: Should any dispute arise in regards to this product, I/we agree to settlement by arbitration.
Well, great, I thought, after glancing through the multiple-page document and noticing the clause. I am not a litigious sort of person, and arbitration seems far preferable to courts and lawyers and outrageous legal expenditures. A reasonable solution.
Wrong. That agreement means I signed away all rights in any future dispute involving the product, committing to a decision that will be made by the person or firm hired by the company who wrote the contract. If I complain, and the company is paying the arbitrator, guess who’s going to win? A recent study showed that 94% of the time, in cases like these, the judgment goes in the company’s favor. Appeal? There is none. The decision is binding, and I have signed away my right to appeal – that’s also in the fine print.
“Lost in the Fine Print”, an eye-opening film just released by the Alliance for Justice, explains how these forced arbitration clauses affect millions of people every day, people like you and me who assume we enjoy such constitutional rights as equal protection, the right to appeal – a voice. I could be out $699. But what if the forced arbitration clause in the small print meant you were done in by a for-profit college that took your money, gave you a worthless “diploma” and prevented you from ever getting a job because they’d already flooded the market with others far less qualified? Or suppose it meant you had no power over the credit card company that was ruining your small business with ever-increasing “swipe” fees. Or it meant that though you had been unjustly fired from your job, you were denied even a hearing? These are three of the stories told in “Lost in the Small Print.”
“It’s a rigged system that helps companies evade responsibility for violating anti-discrimination, consumer protection, and public health laws,” says film narrator Robert Reich.
Reich, a noted political economist, author and speaker who served as U.S. Secretary of Labor under President Bill Clinton, explains how forced arbitration clauses usually go unnoticed in the pages of boiler-plate accompanying today’s contracts. But even if they do catch the eye of the signer – as happened with my recent purchase – their potential impact cannot be foreseen.
And that impact can be huge: a job lost, a business struggling, a life wrecked.
“Lost in the Fine Print” runs for just under 20 minutes. You can watch it online, or order the DVD. It’s free. Those could be the most important 20 minutes you’ll spend in a very long time.