Choosing a better death

Could dying be better?

By now most people acknowledge that there are “good” deaths: peaceful, with minimal pain, at home surrounded by loved ones – and “bad”: pain-filled and prolonged, often for months or years and more often than not in a hospital or other institutional setting. The movement toward “good” death – legalized medical aid in dying – has been growing for decades in the U.S., but has been gaining momentum and attention in recent months.

Liner.2Robert Liner MD, a retired obstetrician/gynecologist, gave an informative update on the movement at a recent University of California San Francisco grand rounds. Liner is one of four patient plaintiffs in a California lawsuit which would make that state the sixth to legalize physician aid in dying, and a longtime supporter of leading end-of-life organization Compassion & Choices. The suit is also joined by three physician plaintiffs.

Liner, whose cancer is in remission, said he would personally prefer to avoid death altogether. “But along with birth, dying is a universal experience. It’s what we all do.” And equally universal, he noted, is the wish to make that experience a little more compassionate, a little closer to what most of us would choose.

Liner outlined the current status of California SB-128, the End of Life Options Act, now working its way through the senate. While granting terminally ill, mentally competent adults the right to ask their physicians for life-ending medication, the bill would also establish safeguards such as requiring assessments by multiple physicians and repeat requests for the medication made at least 15 days apart. A similar law in Oregon has proven valuable in many aspects over the 18 years in which it has now been in place, Liner said. Death W Dignity newspaper

He cited a study published in the New England Journal of Medicine at the end of the Oregon law’s first decade which found that since passage of the law Oregon has seen improved training for physicians in end-of-life care, an increase in individuals’ completing advance directives, improved pain management and rates of referral to hospice and an increase in number of people dying at home.

Putting the better-death movement in historical context, Liner referenced a significant case several decades ago that sometimes goes unnoticed. In 1991, he explained, New York physician Timothy Quill published an article in the New England Journal of Medicine describing how he had prescribed barbiturates to a dying patient when her leukemia reached a point at which she no longer wanted to live. A grand jury subsequently declined to prosecute. Quill later became one of the plaintiffs in a case that wound up reaching the U.S. Supreme Court. And in 1997 the Court let stand a New York law prohibiting what was then called physician-assisted suicide, ruling that there is no federal constitutional right to die – effectively turning the issue back to the states.

Five states – Oregon, Washington, Vermont, Montana and New Mexico now allow physician aid in dying, Liner explained. California’s efforts to become the sixth include a campaign launched last year by Compassion & Choices and the lawsuit filed early this year.

Scales of justiceLiner distributed copies of the April edition of San Francisco Medicine, the journal of the San Francisco Medical Society, in which he and two of the other physicians involved in the lawsuit explain their support for legalized aid in dying. “Collectively, we represent almost a century of medical practice, teaching and research…(and) probably most relevant is our extensive experience caring for dying patients,” write lawsuit plaintiffs Liner, Donald Abrams, MD and Marcus Conant, MD in San Francisco Medicine.

The lawsuit is backed by national disability rights advocacy group Disability Rights Legal Center, Liner explained, and cites a number of reasons why aid in dying should now be legalized. While some arguments – such as privacy and liberty interests – are complex, one seems fairly straightforward: California penal code section #401, which makes it a crime to aid or encourage someone to commit suicide (a very different situation from a dying person’s wish to shorten his suffering), was written more than a century ago. Before dying shifted from being commonly a home event overseen by the familiar family physician to hospitals or other institutions where the large majority of Americans now spend their final days and weeks. Before medical technology made it possible to prolong life, often far past any “life” many would choose.

Liner, and millions of other Americans, believe choice in dying should rest with those who are dying themselves.

 

 

The Human Face of Human Trafficking

chained wrists

Suppose, just for a moment, you are a 13-year-old girl who has been trafficked in America, the land of the free.

You’ve been brought to the U.S. – kidnapped, sold by your impoverished family, picked up from the streets of some land where girls have no value – and prostituted. Or more likely here, you’re a very unlucky American child victimized by traffickers. As a result of this tragic history, you are pregnant. Or, you survived God knows what only to become a 20-something victim of human trafficking – which now leaves you pregnant.

You should be forced to carry this pregnancy to term? Excuse me?

This is the human face of the human trafficking bill currently being held up in the Senate. Texas Senator John Cornyn’s “Justice for Victims of Human Trafficking” bill would “boost support for and protection of victims of human trafficking” – unless they happen to get pregnant. Once they become pregnant, that support and protection disappears. Tucked away within the multi-page piece of legislation is a stipulation that abortion could not be paid for with these funds.

It’s the old Hyde Amendment thing – the bill passed late in the 20th century that sent women’s reproductive rights straight back into the 19th century with the stipulation that never a federal dollar would be paid to help them end unwanted pregnancies.

Some young trafficking victims might still seek help, since there are now exceptions in cases of rape or incest. But the fact that the victim herself would bear the responsibility for proving the circumstances of her pregnancy is an insult added to egregious injury.

Human faces get lost in congressional rancor. Senators accuse one another of subterfuge and betrayal. Republicans accuse Democrats of one thing, Democrats accuse Republicans of another. Very little gets done. And in it all, the human faces disappear: faces of mere children who never had a break, of women of every age who deserve a life.

If they had voices, those faces might say, “Remember me?”

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.

 

Arguing With the Doctor – A plea for end-of-life choice

Dandelion

Does the doctor always know best? And in the case of one’s own precious life and death, is it wise to argue the point?

“No One Here Gets Out Alive” – a quote from Jim Morrison – led the title of a lively (pun intended) debate about aid in dying held recently at San Francisco’s Exploratorium. Part of a series on the intersection of science and politics, the event’s full title was “No One Here Gets Out Alive”: The Science, Politics and Law of Death and Dying. The program sought to address a few issues not easily covered in two hours – but still – including (reprinted verbatim):

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?

 

 

 

“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.

 

Andrew Young on peace, justice, and assorted other issues

andrew young

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.

FullSizeRender (2)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.

“Andy.”

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