Walk, Text, Crash: the Orwellian future

Park.ukThe man coming toward me in the park, maybe 500 yards up the path, was walking a large, mixed-breed black-and-white dog. He (the man, that is) was bearded and graying, nattily dressed in black pants, a red plaid sports shirt and gray sweater.

Just ahead of me, walking in the same direction as I, was a younger man dressed in sweat pants and jacket and holding the end of a leash attached to a tan Labrador retriever.

Both men were totally absorbed in texting.

It was a slow-motion episode exquisitely orchestrated for a YouTube video, if only I had been quick enough with my cellphone; as it was, I could only watch, fascinated and wordless. They collided at full speed, one cellphone clattering onto the asphalt and one leash dropped. But there were no apparent casualties. The dogs, at least, had sense enough to have steered themselves safely onto the grass where they were sniffing each other with unconcerned abandon. I smiled politely and kept going.

The episode underlined the hazards of texting while walking, which can surely be as dangerous as texting while doing almost anything else. Almost: there are no available statistics on the adverse effects of texting while having sex, which seems popular in some demographics.

Not long ago, New York Times columnist Nick Bilton wrote a piece in which he shared a New Year’s resolution to quit texting while walking.

“The realization that I may have a problem (along with a lot of other people),” Bilton wrote, “hit me smack in the face, literally, a few weeks ago when I was strolling through Kennedy International Airport, avoiding obstacles with my peripheral vision as I clambered out a text message. Without any warning (as I couldn’t actually see), I was involved in a head-on collision with another man who was also texting while walking.”

Most walking-zombie texters do survive, as Bilton did, with only bruised egos or minimal damage, but that’s not always the case. An Ohio State University study links “distracted walking” to the dramatic increase in pedestrian injuries and deaths.

Equally dismal, for the future of the planet, is how texting while walking may alter human interaction, whether texters live or die with their devices. One report, an interview with Dietrich Jehle, professor of emergency medicine at the University of Buffalo, suggests an Orwellian solution to texting/walking hazards: a cellphone app that shows the landscape ahead, so that texters can text interminably, and see where they’re going without ever looking up.

Is there life beyond a 2 ½ x 5 inch screen?

The Shame of Abortion?

scarlet A“Help us protect the unborn, and save women from the shame of abortion” read the invitation.

It was an invitation to a fundraising event – this writer is on a strange variety of mailing lists – for a pregnancy crisis clinic. A friend who works at the clinic, and whom I respect although our opinions about abortion are poles apart, told me they never pressure or deceive women who come to the clinic. “We just explain that we don’t counsel on abortion,” she says. The fundraiser invitation sounds decidedly less compassionate.

The Shame word tears at my soul.

Thirteen-year-old Natasha, brutalized by more than one relative, is given another chance at childhood through an early abortion at a Planned Parenthood clinic. On top of all the trauma she has borne, she is supposed to feel shame?

Or the couple with a developing fetus they desperately wanted and loved, who decide to terminate the pregnancy later in its term to spare their baby a brief life of terrible suffering. In addition to their deep sorrow, anguish and grief, they should be ashamed?

Or the countless young women in circumstances similar to my own: after choosing to end an unwanted pregnancy for widely varying, compelling, always unique, deeply personal reasons because we are rational women in control of our own bodies – we need a shameful scarlet ‘A’ tattooed on our foreheads?

Words matter.

LIES 5 (2)

The banners proclaiming “Abortion Hurts Women” – posted by groups that seek to end legal abortion – testify to this fact: The posters work, but the words lie. Abortion is in truth far safer than childbirth. It does not hurt women, it protects women. The words are not true. But they work in exactly the same way that the shame word works.

Some words, even when they lie, go straight to the emotions. Emotional appeals become tools to generate support for political positions which hurt women. They should shame those who seek to deprive women of dignity, health and autonomy.

‘Shame’, ‘hurt’ – the emotional trigger words are being used to turn the clock back to the dark ages when women had no voice, no power, no control of their own lives.

As one who has been hurt, not by abortion but by powerlessness, and who strenuously objects to shaming, I declined the invitation.

Women deserve better.

 

A new fight for good death

Kathryn Tucker
Kathryn Tucker

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.

Christie White
Christie White

“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, Dying & the Grey Zone

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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.

ER

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.

“Personhood” by any other name

Personhood

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.

Abortion rights, women’s rights: A major victory

Lady justice

The government has finally been ushered out of the exam room.

In a definitive step protecting women and their very private decision-making, the U.S. Circuit Court of Appeals for the Fourth District on December 22 permanently blocked a 2011 North Carolina law that created huge physical and emotional trauma for women seeking abortions. Not to mention trampling on doctor-patient relationships and the rights of physicians themselves to have rational conversations with their patients.

Those fighting the extremely punitive law included the American Civil Liberties Union, the ACLU of North Carolina Legal Foundation, the Center for Reproductive Rights, Planned Parenthood and others

The law required providers to show an ultrasound and describe what’s on the screen. That is certainly right and proper if patient and provider so choose. But suppose the woman chooses otherwise? The law allowed her to close her eyes and cover her ears, but said the provider still had to go through this narration, regardless of circumstances. Suppose this pregnancy was the result of rape or incest, or there were serious health risks or fetal anomalies — the woman still had to cover her eyes and ears, perhaps singing “La, la, la, la…” to drown out the narrative. Is there any conceivable way in which any of this makes sense?

Fortunately, the Fourth District Court of Appeals thought not.

What has been so appalling about the evolution of this law and the political fight to keep it in effect is the total absence of empathy or concern for women. The same is true for literally hundreds of other state laws still on the books that are designed to shame or coerce women out of having abortions. Public outcry is raised about “protecting the fetus,” often by politicians and others whose concern for that fetus ends as soon as it becomes an unwanted child. With these laws, sanity, good medical practice and women’s rights go out the window. And who loses? The woman. Particularly if she is poor, or disempowered and thus can’t travel to somewhere safe and free from harrassment.

None of us, whatever our politics, want to see women’s lives made worse. None of us really want to see children brought into the world to suffer, other children forced to bear babies who are the result of personal tragedy, or families plunged into chaos and despair. Most of us credit women with having perfectly good brains and don’t want to see them denied use of their brains or control of their bodies. But these are the results of punitive abortion restrictions. At least this one punitive law is now gone, a holiday gift to us all.

Thank you, U.S. Circuit Court of Appeals for the Fourth District.

 

Immigration Then and Now: Three families, three stories

PRELUDE: A contemporary story –

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.

What’s wrong with this picture?

Almost everything, if you asked the five California experts on a recent Commonwealth Club panel in San Francisco. “Undocumented and Uninsured” brought together two heads of clinics where treatment is available to all and two others with unique insight and perspectives. Moderated by Daniel Weintraub, Editor in Chief and Project Director, California Health Report, the panel included John Gressman, President and CEO, San Francisco Community Clinic Consortium and Scott Hauge, President of CAL Insurance & Associates Inc and Co-Founder and Vice Chairman, Clinic by the Bay; Laurel Lucia, Associate Policy Specialist, UC Berkeley Center for Labor Research and Education; and Jirayut New Latthivongskorn, Co-Founder of Pre-Health Dreamers. They were looking at how the Affordable Care Act will impact immigrants unable to get health insurance, and what the healthcare future might hold for them.

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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!”

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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.

 

 

Danger Zone in End-of-Life Talk

carved ice dove

A suicide pill for everyone over 85? Not the wisest plan to suggest right now. But it is, in fact, a possibility put forth by Joyce Appleby, Professor Emerita of History at the University of California, Los Angeles.

In a letter published in the New York Times on November 13, Appleby notes a recent anti-longevity article by Ezekiel Emmanuel and a new book on end-of-life care by Atul Gawande (both physicians,) and says,

“Perhaps the moment is right for broaching the idea of what we might call prophylactic suicide: the decision of an elderly person to pre-empt the grim reaper and avoid the disabilities of extended life.”

Appleby goes on to note that organizations such as Compassion & Choices, with which this writer has worked closely for well over a decade, “are campaigning for dignified terminations of life for those with incurable diseases” but writes, “What I propose goes a step further, extending the right to people before they face terminal or debilitating illnesses.”

Not surprisingly, Appleby’s letter – one of The Times’ regular “Invitations to Dialog” – drew more than 300 responses. Nine were selected to appear either in print or online; this writer’s is among those online and is as follows:

“I strongly support the right of a terminally ill, mentally competent adult to choose aid-in-dying, now legal in five states, but Ms. Appleby does a disservice to the cause by suggesting “a step further” — prophylactic suicide. The latter bears no relation to the former.

“We would be far better served to fight unwanted medical treatment, so often futile and excruciatingly painful at the end of life, and to enforce individual advance directives. My own directives (I’m 81) stipulate that no medication other than pain relief be given should I become unable to speak for myself, and stress that I do not wish to be fed if unable to feed myself. More important, all of my children and close friends understand these wishes because we’ve had the conversation.

“Let’s work toward those sane measures, and leave “suicide” out of it.”

Because the Death With Dignity movement is so important, and informed dialog about it so critical, it is both tragic and dangerous to have misinformation and misperception spread. There’s been enough of both over the decade+ in which the movement has slowly gained strength. To set the record straight:

Death With Dignity – the right of a terminally ill, mentally competent adult to ask a physician for aid in dying – is now legal in five states (Appleby left out New Mexico) and the movement is fast gaining ground in half a dozen others. This is partly because people increasingly understand that Death With Dignity is not suicide – and is certainly no kin to “euthanasia,” as Emmanuel would have us believe. Under Death With Dignity laws, death comes because of a disease. Every death certificate for those who have considered or used DWD laws lists the cause of death as the disease; it is not caused by suicide. Euthanasia would never be allowed under DWD laws.

But the movement is also gaining strength because it has been carefully thought out and tested. Because it is rational and safe. DWD laws are designed to promote individual autonomy, and incorporate safeguards against abuse.

Much of the opposition (as evidenced in several of the letters in The Times) comes from misunderstandings which are advanced by Emmanuel’s and others’ misuse of the word “suicide” and by fears that the elderly will be encouraged to get out of the way as Appleby’s notion suggests. Both writers muddy the waters and undermine an important cause.

Death With Dignity is a safety zone. Irresponsible words throw it into a danger zone.

 

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