Dying On Your Own Terms

Mileva Lewis with the author
Mileva Lewis with the author

Do Not Resuscitate? Allow Natural Death? Do everything to keep me alive? Whatever happens, I don’t want tubes down my throat! Keep me out of Intensive Care Units!

End-of-life decision-making gets tougher every day.

Dying – that straightforward, universal human experience – now often involves a bewildering assortment of choices and decisions. And most of us are poorly prepared. We have core values (and usually more than a few fears and family histories) that come into play in making end-of –life choices, but too many of us are caught unawares.

At a recent Commonwealth Club of California event Mileva Saulo Lewis, EdD, RN, used a “values history” approach to explain how these difficult decisions are made, and to help audience members walk through the process. “Values history” translates: What matters to you? Why? It was developed at the Center for Medical Ethics and Mediation in San Diego.

“Values,” Lewis explains, “are the criteria by which you make decisions.” They might be rooted in your home and family, your faith community, college or university, workplace or elsewhere, but one’s values underlie all decision-making. And the reason all this matters today, especially with end-of-life decisions, is that medicine and technology have made seismic shifts over the past half century.

Lewis spoke of how the patient/physician relationship, one of these shifts, has moved from the paternalistic, “father knows best” model to what is now often termed “patient-centered” care – shared decision-making. This new model requires patients not only to be well informed, but also to be proactive and to make their values known.

The goals of medicine, Lewis explains, include curing disease, relieving symptoms and suffering, and preventing untimely death. The patient’s part is to make sure the healthcare provider explains and counsels adequately, and respects the patient’s expressed wishes. Ideally, decisions will be made in concert.

Lewis outlined some of the factors to consider in end-of-life decision-making such as how important to you is independence, being able to communicate with others, being pain-free and other end-of-life circumstances that have been frequently discussed in this space. She suggested one tool that has not been mentioned here, and is an excellent aid: the Ottawa Personal Decision Guide. However you make (and record) your personal choices, she stresses the importance of thinking through your values, writing down your wishes and – most important of all – talking it all over with friends, family members and your healthcare provider.

“Know yourself,” Mileva Lewis says. “Communicate. Trust yourself, and your healthcare provider. And be proactive.”

Heeding Lewis’ advice can help protect your values, and insure that your end-of-life wishes are respected.

Immigrants? Which immigrants? – – – – An Ohlone comments, & Nancy Pelosi adds a few words at interfaith gathering

peace dove mosaic

Native American vestments draped over his 2015 business suit, Ohlone descendant Andrew Galvan, whose ancestral lands encompass the San Francisco Bay area, smiled broadly at the 400+ paying guests at a recent event in San Francisco. The attendees had just responded to queries about when their ancestors first emigrated to the U.S.: some in the 21st century, most in the 20th century, a few in the 19th, 18th or 17th.

“My ancestors,” Galvan observed, “apparently welcomed all of you.” Coming at a time of crisis and dissension over new immigrants seeking welcome in these old lands, the message was not lost on anyone.

The occasion was the 18th Annual Interfaith Thanksgiving Prayer Breakfast hosted by the San Francisco Interfaith Council. Some 800 churches, synagogues, mosques and other faith communities are part of the SFIC. Months before refugees and immigration became a global humanitarian crisis and a U.S. political tinderbox, plans were underway for this year’s breakfast. Its theme? “Faith and Sanctuary: There Are No Strangers.”

Galvan explained that his ancestors acknowledged a Grandfather creator-god – who worked in cooperation with Grandmother Earth. He then led prayers of thanksgiving, with explanations, to the four directions:

To the East, “where the new day begins and we have the opportunity to begin again and again.”

American Indian Movement Flag

To the South, “where the warm winds come from, as well as our brother the fire. Grandfather, we ask you to control and contain our brother the fire.”

To the West, “where brother sun sets and the moon and stars are in control; and we enter dreamland. Grandfather, protect the children who sleep and keep us clear of nightmares. Teach us to live right that we may die right.” And :

To the North, “where are the snow-capped mountaintops. Grandfather, thank you for our sister water. We thank and praise you for the gifts of Nature.”

There were other explanatory elements, but most notable, for the multi-ethnic group representative of so many contemporary religions, was the business of cooperation among all those Grandfathers and Grandmothers, brothers and sisters.

Toward the end of the program former Speaker of the House Nancy Pelosi arrived, slightly late, offering as her apology the fact that she had been outside on her cellphone (“You could probably hear me . . .”) with colleagues in Washington threatening to shut down the government unless we stop admitting refugees. “These children,” Pelosi said with no attempt to control her wrath. “Fleeing war and unimaginable Pelosi at SFIC 11.23.15horrors.” She went on to cite facts about the current refugee population – such as that well over one-third are children, about one-half are women, a large percentage are elderly – and only two percent are in the category (younger, male) that could, though it’s unlikely, constitute a threat. “And if you are in the U.S. today,” Pelosi continued, “and you are a young male on a terrorist watch list, you can walk into almost any gun store and walk out with the weapon of your choice.”

At one largely Presbyterian table (where a few What Would Jesus Do? comments had been made about the current U.S. debate,) someone remarked, “Grandfather and Grandmother are among the refugees. And I think the Great Spirit is not pleased.”

Jury Duty: the Good Citizen job

Jury summons

The dreaded envelope arrived. Superior Court of California, County of San Francisco:

You are summoned for JURY SERVICE (capitalization theirs) during the week, and at the place indicated below. Please read the entire summons entirely…

Who has not received – usually with a little dread – that windowed envelope? Because it means a day, or a week, or a month or more of your life has just been appropriated for Citizenship Duty. That is, after all, what Jury Duty is all about: being the Good Citizen. Doing what you can for the greater good of your fellow citizens.

Actually, I have always loved jury duty. Over the years, my jury duty experiences have ranged from the sublime to the ridiculous.

There was the sweet young thing who scammed a few dozen friends and relations out of a few thousand dollars each, and wanted us to believe she really meant just to make everyone rich and didn’t understand why anybody was mad at her. The unanimous vote to convict came by about the time we got seated and organized.

There were times we deliberated to the point of exhaustion, and times I wondered if a better lawyer would have had us voting differently. There were plenty of times I spent a day or two and wasn’t chosen for duty; usually with a great sense of relief.

There was the time, in a jury pool for a domestic violence case, when the defense attorney introduced his spiffed-up client, and addressed the pool: “There could be implications about Mr. Smith… that he had a few glasses of wine…” The attorney smiled knowingly at us, wanting to be sure we’re all grown-ups and what’s a few glasses of wine after all? I was tempted to say, “Man, don’t give me that bull. You don’t want me on this jury, I will so fry your client.” But I asked to be excused, saying I felt personal bias would make it difficult for me to remain open-minded.

jury-selection-1

The only other time I asked to be excused was when the case involved two corporate entities and some sort of asbestos issue. The judge told us at the beginning that it could run six months. Six months? A couple of corporations wanted 12 citizens (plus alternates) to give up six months of their lives to settle something they should lock their lawyers into a small room to work out? I was beyond irate. The judge invited anyone who felt jury service would be a hardship to come to an adjacent room; virtually the entire pool rose. Uncertain what exactly I would say I began, “My brother-in-law is a chest physician…” and that was as far as I got. “Excused,” said the judge, without looking up. I wasn’t actually very sure where I was going with that explanation, but apparently the judge just wanted to get it over with. I felt sorry for him.

But that’s the way the system works. Good people go to law school, get to be judges and have to sit through all this. More good people give up their time to try to find justice for other good people and perhaps a little justice for the bad guys while they’re at it.

For now, though, I’m opting out. This presents a problem, since apparently you never age out of jury duty and there is no excuse box for Overwhelmed.

One can opt out if under 18, not a citizen, or if one has been convicted of a felony or malfeasance in office. Or if one has a physical or mental disability. None of the above quite worked for me.

At the bottom of the opting-out section, though, I discovered one can be excused if one has a full-time, non-professional obligation to provide care for a related disabled person and alternative arrangements are not possible during court hours. (California Rules of Court, rule 2.1008.)

At last. A reward for the caregiving business. Does caregiving equate to good citizenship? One hopes.

Dust to Dust — to save the planet

Tree

Why is this not a good idea? Wherever you stand on the “ashes to ashes, dust to dust” business, doesn’t it make sense to quit burying tons of toxic materials in the ground along with our dust and ashes?

Recently an idea for better handling of our dust evolved into the Urban Death Project, a nonprofit that caught this writer’s eye with a Kickstarter campaign some months ago. The campaign having surpassed its designated goal, my “Future Tree” tee shirt is now on its way; and the good idea seems worth sharing.

Urban Death Project founder Katrina Spade is not the first to come up with an alternative to the seriously harmful burial practices of recent centuries – practices that dump unimaginable amounts of contaminating formaldehyde, non-biodegradable metal and concrete into the ground, as if the planet had limitless ground to contaminate.

Natural burial, or “green burial” has been around for at least as long as civilization. The writers of Genesis saw fit to include that “unto dust you shall return” line, and most people found ways to make that happen fairly effectively, with exceptions made for the pharaohs. But somehow, embalming and vaults and caskets crept in, and staving off decay became both profitable and popular. Jessica Mitford’s 1963 The American Way of Death exposed abuses of the funeral home industry – Mitford herself had an inexpensive but memorable ceremony in San Francisco this writer recalls with fondness, and her ashes were scattered at sea. Her wildly popular book, though targeting funeral homes, may also have helped kickstart the search for better alternatives to what had become traditional burial practices in the U.S.

CemeteryJerrigrace Lyons was among the natural burial movement’s pioneers, with the founding of Final Passages in 1995. Lyons sought to “reawaken a choice that our ancestors once held sacred.” Final Passages is “dedicated to the reclaiming of traditional funeral and burial practices,” including green burial. One 65-year-old whose will specifies a green burial puts the issue in plainer terms, declaring he wants “to be part of a tree, part of a flower, go back to being part of the earth.”

Urban Death Project takes green burial to a new level. A three-story cone will form the space into which bodies are gently laid to rest, following a cycles-of-nature ceremony for loved ones. Also within the cone are high-carbon materials which – with the help of “aerobic decomposition and microbial activity” – decompose everything fully into a rich compost

All of which makes perfectly good sense.

It is not easy, however, to give up long-held ideas about dealing with one’s remains after one has presumably gone on to a better place. Family burial plots, oak-shaded cemeteries, columbaria and the scattering of ashes in special places all have great attraction. This writer has long cherished the notion of her children and grandchildren having a couple of lovely parties while they toss her ashes into the Chesapeake and San Francisco bays. This despite knowing that cremation takes high amounts of energy and sends carbon dioxide, mercury vapors and other pollutants into the atmosphere.

EarthBut here is the irrefutable bottom line: the total land surface area of planet earth is 57,308,738 square miles, including 33% desert and 24% mountains to divvy up among more than 7 billion people – all of whom will eventually die.

Turning us into trees to shade the next 7 billion? The Urban Death Project could be onto something.

Fighting off dementia

DementiaAlzheimer’s – already afflicting well over 5 million Americans – is expected to claim more than 16 million of us by 2050 if a cure isn’t found. Today it is at the top of the Bad News list of potential diagnoses for almost anyone over 50. Justifiably so, since the Centers for Disease Control and Prevention reports than one in three seniors now die with Alzheimer’s or other dementia.

That’s the bad news.

The good news, explained recently by Patricia Spilman, M.S. at a sold-out Commonwealth Club event in San Francisco, is that there are things one can to do lower the risk, and perhaps slow the progress of the disease. Spilman, who is Staff Scientist at the Buck Institute’s Bredesen Lab, should know. She has spent more than two decades researching neurodegenerative disease, and has written and spoken extensively on Alzheimer’s and related diseases.

“Forgetting,” Spilman says, by way of reassurance, “is normal. You don’t need to remember where you put the car keys last week, or a doctor’s appointment last month.” And studies – including one by Buck Institute founding President and CEO Dale Bredesen M.D. that is fascinating even for a lay reader – suggest that cognitive decline can be slowed, or in some cases reversed.

Spilman’s prepared remarks consisted largely of useful, realistic advice about how to delay the cognitive decline most of us will experience at some point. The audience, ranging from 20-somethings to more than a few senior citizens, was furiously note-taking throughout (or furiously jotting down questions for the Q&A session to follow.)

Exercise – particularly activities that combine movement and navigation such as tennis or golf – is at the top of the list. “It’s easier if you have a partner,” Spilman suggests, “because this adds the important element of socialization. Walking, plus climbing, is particularly good if you try new routes.” More than a few audience members nodded knowingly when Spilman noted the increasing, widespread dependence on mindless GPS. “Take the opportunity to look at a map,” she said.

Cognitive decline can also be offset by paying attention to the critical need for plenty of sleep. To help with a good night’s sleep, Spilman advises allowing at least several hours between eating and going to bed, and having a dark room. Chronic stress is relieved by a combination of exercise and sleep, along with those other preservatives of gray matter, yoga and mindfulness meditation.

Also good for the brain: almost any sensory stimulation. Music, smells, touch. Spilman cites Oliver Sacks’ Musicophilia: Tales of Music and the Brain, and Norman Cousins’ Anatomy of an Illness, in which Cousins treated himself with comedy as useful reading.

“Do something new every week,” Spilman suggests; “every day. Have goals in later life. Take classes, volunteer, build intergenerational relationships, pursue spirituality, encourage others to change and to grow.”

Computer games can improve cognition also. Spilman did not mention any specific sites, but this writer has enjoyed BrainHQ, and other brainy items from Posit Science’s Karen Merzenich, as well as introductory games on the Lumosity site. Most fascinating of all is the University of California San Francisco (UCSF)’s Brain Health Registry, in which anyone can participate; it’s free, and your brain might wind up helping someone else’s brain one day.

The Q&A segment following Spilman’s talk was fast and full of both personal stories and pertinent questions: “What’s normal decline?” (The difference between not remembering the movie star’s name and not being able to do a job well. You might keep a diary of cognitive function.) “What about genetics – the father-daughter-son factors?” (Yet unproven.) “How about overexposure to electromagnetic fields? (Don’t have unnecessary radiation.) And enough other issues raised for two or three more hours.

No one’s brain, in any event, was idle. Which indicates that everyone in Spilman’s audience was lowering his or her risk of Alzheimer’s.

It was — 1933 — a very good year

Ruth Bader Ginsberg
Ruth Bader Ginsberg

Ruth Bader Ginsberg is too old? Perhaps she should consider stepping down from the Supreme Court?

These suggestions were floated more than once in the Q&A session after a recent Commonwealth Club talk by University of California Hastings Professor of Law Scott Dodson. Dodson is the editor of a newly released collection of essays, The Legacy of Ruth Bader Ginsberg, whose writers suggest nothing of the kind. Contributors to the book, and Dodson himself, focus instead on the significant contributions made thus far by the 82-year-old justice, and the impact she continues to have on jurisprudence and on life in the U.S.

Dodson was drawn to write about Ginsberg because he “kept encountering her clear and consistent opinions” and wanted to create an objective view of her legacy – notably including gender discrimination, as in the case that ended Virginia Military Institute’s male-only admission policy, and racial discrimination, as in the voting rights case Shelby County v Holder. In the latter case, Ginsberg famously wrote that throwing out an anti-discriminatory measure as no longer needed “is like throwing away your umbrella in a rainstorm because you are not getting wet.”

As New York Times columnist Gail Collins wrote several months ago: Ruth Bader Ginsberg has no interest in retiring.

Carol_Burnett_1958
Carol Burnett in 1958

Several days before the Dodson talk, David McCullough, 82, spoke at another San Francisco event in conjunction with his most recent book, The Wright Brothers. McCullough did not go into detail about his next project, but gives every indication that he is a writer with no interest in retiring.

Meanwhile in Texas, Willie Nelson, 82, has another concert coming up, and the next show planned by Carol Burnett, 82, is almost sold out.

This writer may not have anything else in common with Ruth, David, Carol and Willie, but we take what we can get. 1933 wasn’t a bad year to be born.

 

John Paul Stevens: 95 & Going Strong

John Paul Stevens

Retired Justice John Paul Stevens, a man of many accomplishments, comes across as a man of few regrets. The latter might be summed up in two words: Citizens United. His regrets over that controversial 5-4 decision, handed down just months before he left the Supreme Court, are strong, and many.

Stevens, who turned 95 in April, appeared recently at an event in Washington DC co-sponsored by the Alliance for Justice and George Washington University Law School. Introduced by AFJ President Nan Aron, Stevens was interviewed by Slate senior editor Dahlia Lithwick and Washington Post opinion writer Jonathan Capehart.

Stevens demurred on several issues such as the benefits or evils of social media and citizen journalists: “I’m not a good person to ask about that.” But on most points he was crystal clear.

Re political candidates having “a litmus test” for potential Supreme Court nominees? Even as to Citizens United, “it’s a bad idea. But the (Citizens United) case should be overruled.” Throughout the interview Stevens referred to the case as bad for the country and the future, and damaging to the basic principles of democracy, “which should be ‘one person, one vote’ and not (decisions hinging) on a bunch of money.”

Asked by Capehart why he had changed from the conservative he was considered when first named to the bench to his later identification as a liberal, Stevens said, “I didn’t change, the Court changed.” Every member appointed from 1981-91, he pointed out, was more conservative than his predecessor.Scales of justice

On electoral reform, another issue Stevens sees as imperative, he said “some things can be done at the state level. The right to contribute (to campaigns, etc) should have some geographical boundaries. Excessive photo IDs have never made sense.”

Stevens, in response to a question from Lithwick about “bombast and aggressive, ideological arguments” in the Court, said that “ideology is not good. That’s one reason I am against televising arguments, which would have an adverse impact on the deliberating process. I believe firmly in people knowing the institution, but not if it has an adverse effect on the institution itself.” Possibly because some member might be a camera hog, Lithwick interposed? “Any one of the nine. And I would include myself.”

Talking briefly about interactions among the justices, Stevens – known to have had a close relationship with conservative Justice Antonin Scalia – gave the impression that the Court does indeed function as intended. “I think John Roberts is a very good Chief Justice,” he said. “He executes the duties of Chief Justice well, although I disagree with some of his decisions.”

Stevens recalled stumbling over a few words while giving his dissent in Citizens United. “I said to myself, ‘You’re not as articulate as you were.’ And that’s when I stepped down.”

Fielding questions five years later, the renowned Justice showed no problem articulating his thoughts. Including the need for electoral reform – and the need to overturn Citizens United.

Figuring Out Who You Are

Hand with book“Please don’t call me Doctor Jones,” said an extremely distinguished PhD speaker I met recently; “I’m just a teacher named Joe. I’ve been Joe all my life.” His name is changed to protect the innocent.

Having one name all your life is almost as interesting to some of us… of a certain age… as meeting a prominent multiple-degree lecturer who calls himself “just a teacher.”

Not someone of many degrees, I am nevertheless someone of many names. Maiden name, married name, resumption of maiden name after divorce, brief and ill-fated second marriage (yep, changed my name again,) eventual marriage to my Final Husband, whose name I took on moving across the U.S. nearly a quarter of a century ago. Because I’ve been writing since college (Fran Moreland) I often joke – though this is not a source of pride, only comic relief – that my literary resume reads like an anthology. Each name still bears its own notoriety, as well as its own burdens.

A fascinating look at what names and name changes have meant to women over the centuries is offered by my talented writer/scientist friend Jo Anne Simson in a recent article published in Persimmon Tree magazine titled “What’s in a Name.”

Names, Simson writes, have been used against women in subtle – and sometimes not so subtle – ways to subjugate, control and deny their sense of personhood. Probably the most damning of these practices for women in America was the assigning to slaves the surname of their masters, which “ruptured a connection to a past culture from which they had been torn most unwillingly. Moreover, the name change signified an identity conversion from personhood to property… ‘Leave your past behind. You are now property, not a person.’”

This writer’s post graduate experience ended with an MFA in short fiction, University of San Francisco Class of 2000, which conferred a degree but no title. I have, however, managed to keep my final literary name since 1992.

At about the same time I took on the final marital/literary name above, my first grandchild was born, bringing the other defining ID: Gran. The favorites survive.

 

 

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