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.
Death-and-dying usually goes with I-don’t-want-to-talk about-it.
Katy Butler wants us to talk about it. She worries, though, about the culture of death-denial, and about the lack of language when we do try to talk. How, for instance, do you say “I don’t want any more surgeries,” without its sounding like “I’m giving up”? Or how do you say “She doesn’t want that treatment” without its seeming you don’t want to keep Mom around? Especially when you know what Mom wants, but the doctors don’t?
Butler, author of the acclaimed 2013 memoir of her parents’ dying years Knocking on Heaven’s Door, spoke at a recent meeting of the San Francisco Bay Area Network for End-of-Life Care. Network members – physicians, teachers, counselors and individuals associated with a wide variety of end-of-life organizations – were clearly in tune with the message: death comes, but few acknowledge or prepare for it. It’s that vast majority, those who don’t want to talk about it, who concern Butler and her audience, including this writer.
Knocking on Heaven’s Door details, in graceful prose, how Butler’s highly educated, physically active, devoted parents managed to get caught up in the brutal reality of dying in the U.S. Her father, a decorated veteran of World War II, suffered years of gradual descent, including having a pacemaker put in when that was mainly a cruel prolongation of suffering; her mother suffered in parallel but very different ways as his caregiver. It is all, Butler fervently believes, unnecessary suffering. She quotes her father as he declined:
“I don’t know who I am any more.” Another year or so later: “I’m not going to get better.” And still later, “I’m living too long.”
Butler speaks of this in terms of “the Grey Zone.” Whereas most of us want simple, black-and-white answers – “This pill will fix everything;” “you can expect to live another four to six months” – in truth, the time before dying is the Grey Zone. And whereas the Grey Zone used to be short and swift, today – thanks to modern medicine and technology – it is forever expanding.
Everyone will enter the Grey Zone sooner or later. You, reader of these words, and I, writer. You may ski into a tree, or get hit by a truck tomorrow, causing your Grey Zone to be little more than a blur; I could have a major stroke or aneurism and be at the crematorium tomorrow. But in all probability, our Grey Zones will come in bits and pieces, and will extend for many months or years. They are likely to include a few hospital stays for broken bones or debilitating illnesses, chemotherapy for cancer, possible time on a ventilator, multiple medications with occasional unpleasant side effects, outpatient and inpatient experiences with doctors we have never seen before and encounters with medical technology yet to come.
Butler advocates shifting our Grey Zones away from the relentless need to prolong life at all costs to the consideration of what really makes life worth living. We would do well, she says, to be aware of when “that space between active living and dying” should shift from Cure to Care: to easing our way from good life into good death.
Butler’s understanding of these issues come from witnessing her father’s long, anguished journey through a Grey Zone of many years and her mother’s steadfast refusal to allow a similar prolonged struggle to mark the end of her own life.
Quite apart from the expanding battles to legalize medically hastened dying, the need to acknowledge the Grey Zone is equally urgent. Most of us would opt to shorten that space between active living and dying, or at the very least to move gracefully from good life into good death.
It can happen, but not without paying attention. Reading Butler’s book, with an eye to how you would like to knock on heaven’s door yourself, is a good way to start.
Because looking realistically ahead makes infinitely more sense than zoning out.
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?
A recent report by the Guttmacher Institute took a new look at an old game being played – anew – by anti-abortion, anti-women forces. It is called the Personhood Game. If anti-women forces win, a fertilized egg becomes accepted as a person. Which means that every fertilized egg is accorded rights above those of the woman in whose body it is housed – fine for eggs, but pretty dismal for women.
Not a lot of rational people, including rational people who vote, think it makes sense for eggs to be deemed persons. This was made clear last year by the failure of such bills in several state legislatures. Not to be dismayed, players of the Personhood Game have simply switched their energies to fighting contraception. The more contraception bans succeed, the stronger the eventual case for declaring fertilized eggs sacrosanct. Why? Because contraception bans are based on religious doctrines that hold such a view. Though keeping their distance on personhood politics for now, anti-abortion groups including Americans United for Life, the Heritage Foundation, Susan B. Anthony List and the U.S. Conference of Catholic Bishops are among those working hard and widely to ban access to contraception.
Is there a disconnect here? Since effective contraception lessens the number of unwanted pregnancies, and thus the number of abortions? Well, yes. But the people playing the Personhood Game simply have their eye on the prize: Fertilized egg wins, woman loses.
Writer/blogger Joanne Valentine Simson, who is credentialed in both science and poetry, has posted a number of thoughtful and informative essays on contraception. Simson points out three critical factors seldom considered in all the arguments for and against contraception: women’s physical wellbeing, women’s social wellbeing, and overall environmental impact. “These are larger issues about long-term human survival,” Simson writes, “(than) the false debate about whether a cell (or cluster of cells with 46 chromosomes) is a human being.” To conflate contraception with abortion simply bypasses every one of them.
But the Personhood Game players are as adept at bypassing reality as they are at steering the debate.
“The influential organizations behind this anticontraception agenda,” writes Joerg Dreweke in a recent, comprehensive Guttmacher policy review, “have compartmentalized the debate, which allows them to pick and choose when contraception should be viewed as abortion and when it should not. They are essentially able to pursue a “personhood” argument in areas where doing so is politically feasible, but at the same time feign moderation by keeping the full-fledged, politically toxic “personhood” agenda at arm’s length. This deception is part of a deliberate, long-term strategy to limit women’s access not only to safe and legal abortion, but to common methods of contraception as well.”
If this seems devious, and underhanded – well, it is. But it’s the way the game is being played.
For women – who are both pawns and victims – it is a dangerous game.
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.
Not every doctor gets an extended view of what his or her patients experience. But one who did – and has shared both the experience and its message(s) is a recently recovered friend and end-of-life issues colleague of this writer, Robert Liner, MD. Liner spent 20 years as an Ob/Gyn with clinical and teaching positions, principally at Mt. Zion Hospital in San Francisco, followed by 20 years in private practice of prenatal diagnosis and gynecologic ultrasound. Among his exhausting list of interests and endeavors are piano lessons, playwriting, poetry, working to publish an illustrated lullaby — and serving on the Leadership Council of Compassion & Choices of N.CA. (And occasional adventures into designing menswear, such as a reincarnation of the ancient ‘Baldric‘, modeled above, which Liner feels makes a lot more sense than the necktie.)
Not long ago, though, all of these – plus a simultaneous major house move and recent new marriage to longtime lady friend – were severely complicated by a bout with life-threatening illness.
“A year ago, on my sixty-ninth birthday,” Liner wrote in an article that recently ran in San Francisco Medicine, “I checked into Kaiser Hospital for work-up of a chronic cough, back pain, severe anemia and a low-grade fever. Believing that patients often overreact to symptoms and seek medical attention prematurely, I had let things go a bit far. I’d been easily fatigued and a bit short of breath, but when a couple of days prior to my hospital admission my wife saw me leaving food on my plate at a favorite restaurant, she insisted on taking me to the ER. I told her this would be an abuse of ER resources but, once there… watching two units of blood being transfused into me, I brilliantly arrived at (the same) conclusion: I was seriously ill.”
Liner covers the days of his hospitalization with openness and humor: “Generally, when getting medical care, I avoid mentioning that I’m a physician. Even experienced providers sometimes have steadier hands when not aware they’re administering to a physician. Or, for that matter, to a malpractice attorney.” (You can read the entire, illuminating piece in the current issue of San Francisco Medicine. It is a significant message to physicians, and an informative and reassuring message to anyone facing hospitalization.)
Liner emerged from more than six months of chemotherapy, radiation therapy and “a lot of drugs” with his B-cell lymphoma in complete remission and a low percentage chance of recurrence. But in addition to the firsthand lessons for physicians and patients about illness, he offers a powerful lesson for all of us about dying – since all of us, patient and doctor alike, do eventually die. Liner and his wife faced that possibility throughout a 36-hour period in which it seemed likely that his disease would, in fact, be terminal; they faced it with “a profound sadness.” But he explains:
“There was nothing irrational about that sadness. Patients who are genuinely terminally ill and who seek physician aid in controlling the time and circumstances of their deaths should not be thought of as irrational or pathologically depressed. If, unexpectedly, my lymphoma recurs, the prognosis would be ‘dismal.’ If that happens, I believe it should be within the scope of ethical, legal medical practice for my doctor to provide me with a lethal prescription – a key to the exit.
“Physician aid in dying is something distinct from suicide. The disease would be killing me. No compelling state interest here. No slippery slope. Only a decision to be made by me as a patient, along with my family and my doctor. As a physician and as a patient, I see this as a fundamental liberty interest and as sound, compassionate practice of the art of medicine. Of, course, where my death is concerned, I’d rather skip the whole thing.”
Working with Women on Waves – the organization determined to make safe abortion available around the globe – is not for the faint of heart.
Vessel, a new documentary currently being shown around the U.S., traces the progress of Women on Waves from its beginning more than a decade ago and through its now sister organization Women on the Web. That progress winds through angry protest mobs pushing, shoving, shouting “Murderer!” “Go Away!” and worse, and throwing eggs (and worse.) The women of WoW, mild-mannered though they may appear, retaliate by cutting the ropes of police boats attempting to tow them away, going nose-to-nose with burly guys on protest lines and breaking the seals of locks placed on their supply cabinets.
Meanwhile, the movement steadily grows.
Women on Waves was founded in 1999 by Rebecca Gomperts, MD, MPP, who was trained in both medicine and visual arts in her native Amsterdam, the Netherlands. (It doesn’t hurt, for the film, that Gomperts is also attractive, articulate in several languages and highly photogenic.) As a young Ob/Gyn Gomperts traveled – one might say trained – with the Greenpeace ship Rainbow Warrior as its doctor and an environmental activist. While sailing in South America she was struck by the numbers of women suffering from lack of access to reproductive health services and safe, legal abortions – and inspired by their stories to start Women on Waves.
The group built a clinic-in-a-box, loaded it onto a ship and sailed into such unwelcoming ports as Morocco, Portugal, Spain, Poland and eventually scattered cities around Africa, Central and South America. The strategy was to anchor 12 miles offshore in international waters, where local authorities had no jurisdiction. Local authorities were seldom pleased. Gomperts was often on land, hanging banners announcing the phone number for pregnant women to call, drumming up press – usually unfriendly press – agitating the authorities and spreading the word, smiling pleasantly in the face of incredibly hostile opposition.
Once the medical abortion procedure using misoprostol became widely available and safe, if used as directed, Women on the Web began its own ambitious program of making the procedure available through the internet. And safe abortion slowly gained through changing laws.
But the film ends with a litany of places where poor women (if you’ve got money, you can manage to find a safe abortion somewhere) remain at risk for lack of access to safe abortion, notably including much of the U.S. Watching it in the U.S., where abortion has been legal since 1973, and being reminded again that women here are suffering and dying today, is sobering, and indescribably sad.
The sadness comes from hearing the same, tragic stories that first inspired Rebecca Gompers, and some years ago inspired this writer to create the book you see at the right. They come through the voices in the film:
“I’m scared to death.”
“I tried hitting myself in the stomach…”
“My family would disown me if they found out.”
“Can you help me?”
How can we be ignoring these voices in the United States today?
The Three Fates, Flemish tapestry (probably Brussels ca 1510-1520) Victoria and Albert Musem, London. (WikiMedia)
Live longer, get smarter? We wish.
And this wish could some day come true, thanks to the gene variant KL-VS, whose friendlier name is the klotho gene. The klotho gene was already known to be associated with longer life. But a team of scientists at UCSF and the Gladstone Institutes, found that it also seems to make people smarter.
One in five of us has the klotho gene. As this writer is definitely older I had hoped to get in on the smarter, although I never cancelled the dementia provision of my advance directives. But in an interview with San Francisco Chronicle health writer Erin Allday Dr. Lennart Mucke, director of neurological research at Gladstone, said, “Klotho increases cognition but doesn’t replace aging-related decline. You’re just coming down from a higher level.” So much for immediate — or personal — optimism.
UCSF Assistant Professor of Neurology Dena Dubal was lead author of the study, findings of which were published recently in the journal Cell Reports. Dubal and Mucke say more studies are needed, but the hope is that eventually klotho could help old brains — old human brains; so far we’re talking about mouse brains — function better.
This writer, having an old brain far too right-brained to follow neurological research very far, did at least complete several years of Greek at Randolph-Macon Woman’s College some years before Dena Dubal was born. But as my class notes are not handy I turned to Theoi.com, an online encyclopedia of Greek mythology, to find more about Klotho. (For the record, her name is more commonly spelled Clotho in classical texts, but most of all this pre-dates Spellcheck.)
Klotho and her sisters Lakhesis and Atropos where the daughters of Zeus and Themis, and in Greek mythology one couldn’t ask for better parentage. They were known as “The Fates,” or “The Moirai,” the goddesses who determined everyone’s destiny. According to Theoi, “They assigned to every person his or her fate or share in the scheme of things.” Clotho (on the right in the tapestry above) was “the Spinner,” who spun the thread of life. Lakhesis (in the center) measured the thread of life and Atropos (on the left) cut the thread. Presumably they are arising from Themis; birthing in mythology was somewhat less complicated than today.
(It’s tempting to speculate on what it would mean to have too many Atropos gene variants, but that is going too far with all this.)
No amount of Googling turns up the scientist who named the KL-VS gene variant after Klotho, but he or she had an appropriate understanding of Greek mythology. If Klotho can indeed eventually lead to reactivating old brains, she will have spun us all a golden thread.