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.

My Problem With the Pope

Pope Francis
Pope Francis

Pope Francis the Good is one truly uplifting presence on the world stage. Millions of us welcome and rejoice over his messages about helping those less fortunate, building tolerance and seeking justice – all goals that could use reinforcing in almost every corner of this turbulent planet. Even for us Protestants, it’s a good time to share the name Frances, by whatever spelling.

But the pope and I have a small disagreement.

Should a woman have control of her own body? Not if it contains an embryo, or if she might want to prevent it from growing an embryo, according to the pope.

Abortion? Absolutely not, says the pope. Being a forgiving sort, he has empowered more priests to “forgive” women who have chosen to have abortions and would like to continue practicing their Catholic faith. But once conception occurs – no matter that it’s the result of rape, incest, abuse or a limitless range of very personal issues – the woman must be shoved aside and all focus be on bringing that unwanted fetus into a life of questionable care. And any woman who has made this very personal decision must “seek forgiveness”?

This writer does not profess to be a Biblical scholar, but I have not found, or ever had anyone point out, anywhere in the good book that it says Thou Shalt Not Abort. In all the centuries of mostly men who wrote and have subsequently interpreted the Bible, somehow they – including centuries of presumably celibate priests – have simply opted to deprive women of all reproductive freedom. And today they would still deny a woman’s right to exercise free will.

But it is on the issue of contraception that the pope’s messages ring false, and harsh. One cannot fight poverty and simultaneously demand that poor women bear more unwanted children. If one so adamantly opposes abortion, how can one ignore the fact that adequate contraception would prevent millions of unintended pregnancies – and reduce abortions exponentially?

According to a recent New York Times editorial, a “2014 poll of 12,000 Catholics in 12 countries found that 78 percent supported contraception; in Spain, France, Columbia, Brazil and the pope’s native Argentina, more than 90 percent supported its use.”

The Guttmacher Institute, quoted in the same Times editorial, reports that some 225 million women who want to avoid unintended pregnancies do not use (often cannot access) reliable contraception. “Providing them with contraception would prevent 52 million unintended pregnancies, 14 million unsafe abortions and 70,000 maternal deaths a year.” Even if you don’t care about the maternal deaths – as is clear with “Pro-Lifer’s” everywhere – how does it not make sense to prevent the 52 million unintended pregnancies and 14 million unsafe abortions?

Could someone please ask the good pope to consider these facts? He probably won’t get that request from House Speaker John Boehner, one of twelve children, but he could get it from his equally faithful follower former Speaker Nancy Pelosi. Pope Francis is reportedly a very good listener.

One can only hope.

Holding Silvan: A tale of loss and love

The new mother’s worst nightmare came in shards of bewildering words: “subdural hematoma… basal ganglia… thalami…sagittal sinus…” And the terrible eventual diagnosis: “severe hypoxic ischemic encephalopathy.”

 Monica Wesolowska
Monica Wesolowska

Once they had processed the meaning of it all – that their beautiful baby had no functional brain, no hope for a life, Monica Wesolowska and her husband David made the hardest decision ever required of parents, to let their infant son die. It was a decision complicated by advanced medical technology, a world into which the family was swept up, and by the wrenching physical, emotional and moral issues. But the two grieving parents clung fiercely to the conviction that they were choosing what was best for their son, and to the determination that for whatever time he had they would give him comfort, care and abundant love.

Wesolowska tells this tale with unflinching honesty in Holding Silvan: A Brief Life, a small book that manages to keep the reader mesmerized with what is ultimately a story of courage and, above all, life. She spoke with this writer recently about the book, and those days.

“I wanted and needed to write it,” Wesolowska says, in response to a question about whether the writing was therapeutic. “I felt very fortunate to be able to spend time remembering Silvan. Also, to revisit the time, do research…” Years later, both the experience and the firstborn son are integral to Wesolowska’s life; in the days and weeks after Silvan’s birth there was time only to struggle with the issues at hand. It is the immediacy of this struggle, overlaid with the love that surrounded Silvan as he died, that holds the reader.

After publication, we asked, did Wesolowska get negative feedback? “I was surprised at how little,” she says. “In part, I think it was because so few people want to read a book about the loss of a baby. A few heartening back-and-forths, when people came around. But the most difficult (discussions) are with parents of brain-damaged children. It turns out that what they’re dealing with is much less extreme (damage.)” In such cases Wesolowska tries to communicate the singularity of the choice she and David made. “My goodness, I would never suggest a child with disabilities is not absolutely loveable. I’m not here to judge the difference of your love.”

Holding Silvan coverThere were helpful and unhelpful things that people said and did as Silvan was dying and in the aftermath. The best, Wesolowska says, “were the people who told me I was a good mother. What I was going through was motherhood, and a deep love. The hardest to take were when people said ‘Why didn’t you let him die a different way,’ or ‘How can you be so certain?’”

No one, though, tried to talk them out of their decision. In their Berkeley, CA area, “We were in a kind of liberal bubble,” she says. “But we really struggled toward the end. Legally, it was frightening.”

For all the fear, tragedy and loss, Holding Silvan is surprisingly uplifting. And, Spoiler Alert: there is a happy ending.

 

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.

Illness, Wellness and Procrastination

gumby & stethoscopeYou may have had an experience like this: some nagging health issue not quite bad enough to take the time to tackle. Or with a solution that seems too painful, too bothersome… so you let the issue keep on nagging, usually getting worse.

For me, it was a minor foot issue – okay, an inelegant ingrown toenail. My good pedicurist, alternating with a private podiatrist (my healthcare provider does not provider for regular foot care,) kept the darned thing at bay for the past four or five years. It was a pain in the foot, but on the scale of one to ten it peaked to eight only rarely. Almost a year ago, my podiatrist reached the limit of his patience.

“Look,” he said (while I tried not to look,) “I’ve nursed this thing along for months, maybe years longer than need be. Go for the surgery.” He drew a few lines to show where a slice of toenail would be cut off. “Kaiser has some excellent podiatrists. It’s done with local anesthesia and only takes a few minutes. Three or four weeks of soaking etc, keeping it clean, you’ll be fine.”

Those were the words he spoke. What I heard was: Local anesthesia! Sticking needles in between my toes! Three or four weeks with one foot in a pan? A month without walking along the admittedly dirty park trails? It took me another six months to screw up my courage. Months of anticipated agonies one could hardly wrap the mind around, months of despair over a lengthy recuperation…

Toe 8.7.15Finally I took a deep breath and scheduled the surgery. Instead of (or before; I still wasn’t looking) the shot in the toe there was a freezing action the doctor said would “feel like ice pouring over the area” which was, in fact, breathtakingly painful for about 15 seconds. And that was it. A few minutes later I was handed a sheet of instructions for “after a nail procedure,” fitted out with a Velcro’d boot, and sent off to drive home. It was all I could do to remain pitiful enough for a few hours’ sympathy. The next day, the fancy bandage came off. Recovery boiled down to Band-Aids and a little pother of three-times-a-day soaking for 5 minutes. Probably the most difficult part of this long-feared episode was being confined to home for two days, soaking, elevating (not critical, but perhaps helpful) and feeling pitiful. By the end of the second day I was going stir crazy. So I suited up in socks and Birkenstocks and went to a jazz service.

There I met an old friend who left San Francisco several years ago. “I guess you hadn’t heard about Bob’s surgery,” she said, when I asked how long they’d been in town. “They found a tumor on his kidney. He was at the VA, and they took out one kidney, his urethra, a lot of other stuff. They say he’s fine now. We got an apartment here so he could recuperate.” About that time her recovering husband walked up for a hug.

“Well,” I said, “I was going to complain about my toenail.”

 

 

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.

Men Against Women’s Rights

Lady justiceThere is something unnerving about the rush of Republican presidential candidates to go on record as standing firmly against women’s reproductive rights.

Addressing a recent gathering of the National Right to Life Committee – which itself stands firmly against reproductive rights for women; its sole concern is with the fetus – a handful of the leading Republican candidates tried to outdo each other in expressing their anti-women positions. This was before Wisconsin governor Scott Walker threw his hat into the ring with a stirring promise to work for “the unborn.” What Walker means is this: he has zero interest in the mothers of those “unborns;” but he welcomes the political support of anti-abortion forces.

And anti-abortion forces have a lot of political muscle. A sample of the comments being made by candidates seeking to capture it would include:

Jeb Bush, whose “moral absolutes” do not include a woman’s moral right to make her own reproductive decisions, points to the laws passed during his tenure as governor of Florida: the funding of adoption counseling – but not abortion counseling, banning late term abortion, and imposing medically unnecessary regulations on clinics offering abortion.

Rick Perry wanted the anti-abortion group to understand that when he was governor of Texas his record on denial of a woman’s right to choose was best of all. “That’s a fact,” he said. “We passed a parental notification law. I signed a parental consent law. I signed a sonogram law so mothers facing that agonizing choice can actually see.” Forcing parental involvement on very young women who often need to keep their decision private, and all women to view a medically irrelevant sonogram whether they wish to or not – these are the sources of Perry’s pride.

More recently, we have the ever-articulate Donald Trump entering the fray with the comment that “it really, really bothers me, the whole concept of abortion.” Trump’s interest in women, which is well-documented if problematic, does not extend to an interest in their right to make their own reproductive choices.

And lastly, Marco Rubio seeks to enter the White House because it “needs an occupant who values and prioritizes life.” Read: life of “the unborn.” If Rubio gave a fig for the lives of uncounted thousands of women put at risk by the restrictive laws he supports – his values and priorities might shift.

All of the above are men, without the vaguest notion of what it is like to be pregnant as a result of abuse, incest, assault or a multitude of other wrongs, or simply what it is like to be a woman denied control of her own body, her own most private and personal decision-making.

Such is presidential politics today.

1 4 5 6 7 8 37