Peaceful dying vs Doctor Knows Best

credit acpinternist.org

Barbara Coombs Lee, the sharp and articulate president of Compassion & Choices, spoke to the issue of death with dignity on PBS NewsHour tonight, with opposing views presented by Ira Byock, noted physician, author and advocate for palliative care. Neither really won; the time was too short and the issue is too complex. The Death With Dignity movement though, is not going away, and we the people will only win when the movement wins.

Lee spent 25 years as a nurse and physician’s assistant before becoming an attorney and devoting her life to personal choice and autonomy at life’s end. She believes a terminally ill, mentally competent adult should have the right to end his or her life when and how he or she chooses. Byock, chief medical officer of the Providence Institute for Human Caring, believes that if doctors were properly trained in pain management and end-of-life care – which he readily admits is far from the case – no one would ever want, or choose, to hasten one’s end. Lee appreciates the grace with which Brittany Maynard is facing her own very premature death; Byock says the active, well-educated 29-year-old is “being exploited” by Compassion and Choices.

A few caveats:

Barbara Coombs Lee is a good friend whom I admire and respect. I have worked with Compassion & Choices for well over a decade as a volunteer, Northern CA member and board chair, and now member of the Leadership Council. I strongly support physician aid-in-dying and individual autonomy.

“Hospice and palliative care,” Lee said on the NewsHour segment, “are the gold standard” for end-of-life care. But no amount of hospice care, or palliative care, can alter “the relentless, dehumanizing, unending” progression of a disease such as Maynard has and many of us will also face. For many of us, as for Maynard, there will be loss of every bodily function, one by one, quite likely accompanied by excruciating pain and possibly things like the seizures Maynard would like to minimize for her own sake as well as the sake of her loved ones who would be forced to watch.Stethoscope

Perhaps doctors will eventually all be adequately trained in pain management and palliative care. But even then – and “then” is a very long way off – must the doctor always know best? Why can’t I, the patient, the person facing my own dying, be the one in control?

Byock is dismissive of the pain involved with watching a loved one suffer agonies of prolonged dying. Maynard’s inevitably increasing seizures, for example, would be helped by palliative care, he suggested, so she wouldn’t suffer terribly. If I chose – as Maynard is choosing – to have my loved ones remember me as a woman at peace while holding their hands rather than a disintegrating person gripped with terrible spasms – why is that not an honorable choice?

Byock – who in this NewsHour fan’s humble opinion got the better time and treatment – slipped in words like “suicide” and “slippery slope” and “euthanasia,” and phrases like “euthanized in the Netherlands” too far along in the program for Lee to answer in the brief time given her. Byock ignores the fact that no one choosing to hasten death under the existing laws (four states now have the law, two others allow aid-in-dying) is committing suicide; they are being killed by their disease. No one has been, or will be, “euthanized.” The United States is not the Netherlands. He also ignores the fact that in the long years of Oregon’s successful law – it was first enacted in 1997 – there has been not one report of abuse. Not one.

There is no slippery slope. There is only compassion. Self-determination. Autonomy. Dignity. Grace. Peace. Why should they not be legal?

I respect the medical and literary achievements of Ira Byock. But I’m sorry: the doctor does not always know best.

Smarter Scams, New Victims Every Day

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My “grandson” and I talked for a full several minutes before I determined he was no one I knew. Despite a few clues – my grandchildren don’t call me “Grandma,” his voice could have been the 21-year-old I hadn’t seen in nearly a year, but it wasn’t perfect – I found the caller convincing enough to trade three or four questions and answers before I hung up the phone.

“Grandson” never got around to the pitch. I want to believe I would never have fallen for a story that would separate me from several thousand dollars, but I surely could have. Today’s scammers – especially those preying on seniors or the socially isolated – are incredibly skilled.

One very smart senior in the San Francisco Bay Area was recently taken in by a call from a fake grandson – and had the courage to tell the story to the local newspaper. Retired physician/author Walter Bortz, who has a real and well-loved grandson, listened with shock and sorrow to an entirely plausible tale that wound up costing him $5,000. The “grandson” told of having had too much drink the night before, of drugs found in the cab he unfortunately took, going to jail, getting beaten up and having his nose broken. Then he gave the phone to a “police officer” who explained how bail could be arranged……..

Elements of the scam – eloquently told to local reporters by the victim – are widely used. The “relative” is often caught up in an arrest involving drugs and/or guns (through no fault of his or her own) and often in another state or country. The need is always urgent, to avoid some terrible consequence like jail time or to cover medical expenses. Transactions are made through prepaid cards available almost everywhere today. Once cashed, the money is impossible to trace.

It’s the meanness of these scams that is almost as bad as the financial loss. Rose, a young businesswoman, tells of her own grandmother getting a call from someone pretending to be Rose and spilling out a tale of disaster that had her grandmother frightened and sobbing. Long after the ruse was uncovered and explained – “I was calling my grandmother, saying, ‘Look! I’m here at my desk. I’m sending you a photo! ’” – the targeted victim was still in distress over the fears she had had for her beloved granddaughter.

JoAnn (a pseudonym,) a friend of this writer in Louisiana, fell victim – almost – to one of the oldest scams around. It began with an official-looking notice of her having won a Canadian lottery. JoAnn lives alone and has withdrawn from friends – but she plays the lottery; she thought one of her tickets had paid off. The notification included a “Certified check” for her seven-figure winnings. All she had to do was deposit the check, wire $1,279 to cover out-of-state taxes, and live in luxury. JoAnn was saved by an alert teller who had not seen her come into the local bank for a long time. The teller began asking questions about the sender, and JoAnn finally told her about winning the lottery. “If you don’t mind,” the teller said, “let me see if this check clears before you do anything further.”

My friend suffered not from financial loss but from the embarrassment factor. JoAnn was in tears by the time she got through telling the story over the phone. “How foolish did I look?” she said. “Suppose word gets around that I fell for such a thing. I have a PhD, for heaven’s sake.” The teller turned everything over to federal agents and it’s highly unlikely that word got around.

But word should get around. Bortz deserves high praise for going public, proving that no one is exempt from the possibility of being scammed. “I like to think that I am worldly wise,” he told The Almanac, “(and yet) I got snookered into this one. But I guess it shows that I’m a nice grandfather.”

Nice grandfathers, and grandmothers, and gentle people everywhere, are being targeted today. The Federal Trade Commission has a fairly complete list of current scams, and how to deal with them, on its Consumer Information page.

The schemes are old, the twists are new, the advice is age-old and two-fold: (a) Keep asking questions; and (b) If it seems too good (or even bad) to be true, it probably is.

MatchDuck.com Ceases Operation

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Alas, Musco the Mountain Lake Muscovy duck seems destined to a life of bachelorhood. (Or spinsterhood, as the case may be.) And all things considered, it could be worse. As Muscovies are known to be particularly tasty (a fact I did not feel called upon to point out earlier in The Musco Saga) one likely explanation for his appearance on Mountain Lake is that he was pardoned from someone’s Thanksgiving dinner.

Jason Lisenby, Biological Science Technician of the Presidio Trust, would never be called anti-duck, but he is decidedly anti-non-native species. And for all his charm, Musco is an interloper. Lisenby gently explained that my burgeoning campaign to find him a mate is, therefore, a seriously bad idea.

(Some fascinating information about Musco’s extended family is offered by reader Doug, in the Comments section of the earlier post about my feathered friend, but for purposes of brevity here I am sticking with the local authorities.)

The unfortunate facts are that given a chance – and the potential, with an agreeable Musco Mom — to launch a tribe of baby Muscovites,  Musco could soon upset the ecological balance of flora and fauna. For besides being tasty, Muscovies are both prolific and sizable, and could send the more delicate others packing. In some of the linked articles Lisenby forwarded to this writer, there are phrases like “invasive species,” “degradation of water quality” and “disease carriers.” Horrors. Friendly little Musco would do such a thing as degrade the water quality and carry disease? With an expanded family on his non-native lake, it is, unfortunately, possible.

I tried to explain all this to Musco recently (as noted that day on my Facebook page,) and he seemed unimpressed. One desultory peck on the finger, a placid, beady-eyed stare, and after a while he ambled back into the water and paddled away. To what Lisenby proposes is a life of dandy bachelorhood.

Plenty of sunshine. Not a care in the world. Increasingly sparkling waters. Leafy growth for offshore napping. Duck food (Not people food! Don’t feed the wild creatures!) everywhere, free. Admiring children on the beach. And one nutty lady who shows up to sit on the rock and discuss the problems of the universe. Which are of absolutely no concern to a solitary Muscovy duck on Mountain Lake

Who needs romance?

When a duck needs a duckmate

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Musco the duck is in existential pain.

I know this from the way he rolls his beady eye away from me, not that long after he has ambled over for a visit, briefly offering a ruffle of his topnotch feathers. Musco faithfully ambles over, despite the fact that I have repeatedly explained to him people food is not good for waterfowl, and we do not feed the ducks at Mountain Lake. Nevertheless, if he’s in the area when I come sit on the rocks, Musco ambles over, and we commune blissfully with nature, in a sort of duck-to-human relaxation therapy session.

But duck does not live by bread alone. Duck should not, in fact and in the natural state of things, live alone. And Musco is all alone. I am on a one-woman campaign to find him a Muscovy mate.

Just to clear things up: Musco may not be his proper name. He may even be a she, what do I know? All I know is this: among the coots and Mallards and miscellaneous waterfowl that have returned to Mountain Lake since the Presidio Trust (thank you, taxpayers!) undertook the monumental job of rescuing it from centuries of neglect and abuse, there is only one Muscovy duck. A lovely, friendly, peace-loving duck, but all alone.

Could we please find him (or her, as the case may be) a mate?

I first met Musco a few months ago on one of my regular visits to Mountain Lake Park, a lakeside San Francisco park with a Parcourse fitness trail which functions as my personal outdoor gymnasium. Wondering who this strange new creature might be, I posted his photo on my Facebook page with a comment that I had spotted a turducky on the lake.

Not so, immediately replied my far-flung Facebook friend (that’s another story) in Sarawak, Borneo. “It’s a Muscovy. In Sarawak we call it a Serati.” Turns out, a lot of people call it an ugly duckling, and worse. Florida has more of them than they want in some spots, elsewhere cross-breeding has created strange water-fellows.

Musco, however, seems quite beautiful to me, and here he is all alone. He swims on the periphery of the coots, ducks and assorted seabirds. He is, happily, not the least interested in the pigeons on the beach. What’s to be done?

An eminent visiting biologist friend pooh-poohed Musco’s singularity. Muscovy’s are all around California in ponds large and small, he said. If this is the case – and who’s going to dispute a distinguished Professor Emeritus? – then surely there is a mate for Musco. Surely some nearby pond owner would like to make such a match and surely the Presidio Trust wouldn’t mind?

The incredible, beautifully restored Mountain Lake might even be home to a family of little Muscovites.

I’m just sayin’.

The Intriguing Invisible Audience

The questions were sharp, incisive. The comments were poignant, sometimes wrenching, sometimes funny. But the really funny thing was that I couldn’t see a soul in the audience.

This was a recent talk and group discussion with the Senior Center Without Walls. I was on the phone in my living room, the moderator was somewhere else, and some 20 to 30 seniors – most of them old, if unseen, friends by now – were sitting comfortably in their San Francisco Bay Area living rooms. Who knew?

This particular discussion dealt with end-of-life issues, although I got in (with advance permission) an introductory plug for Perilous Times: An inside look at abortion before – and after – Roe v Wade, and my current soapbox about preserving reproductive justice. I talked briefly about my longtime involvement with Compassion and Choices, about the work of that excellent organization, and the multiple benefits of considering one’s own mortality before one’s own death is knocking at the door. From the various phones came personal tales – “My husband died exactly as he wished…” “one member of the family wanted to contradict what (the dying person) explicitly wanted…” And questions about what C&C can do (counsel, advocate, support) and even – every nonprofit representative’s favorite: “Where can I send money?”

Audience members come and go at will, during Senior Center Without Walls discussions, and the pretty constant beeping that heralded the comings and goings made the entire event feel like a free-wheeling open house. Which is, in fact, not far from the truth.

Senior Center Without Walls participants play bingo, read plays, join support groups for everything from low vision to LGBT issues, bird-watch (guided help with identifying the birds seen from your window) and share in adventures that range from armchair travel to sing-alongs.

I hope they learned a little from this discussion leader; I learned a LOT from the scattered seniors of Seniors Without Walls.

 

 

 

The Perpetual Presidential Campaign

We have HOW long until the next presidential election?

Some of us just want to say, Give it a rest… but there seems little chance. Recently I rode the bus home with a new friend who had just attended her first event at San Francisco’s Commonwealth Club, one of a popular series of “Week to Week” political roundtables. She was favorably impressed with the venue, the audience members she met, the moderator (Commonwealth Club Vice President for Media and Editorial John Zipperer) and the panelists: Carla Marinucci, Senior Political Writer for the San Francisco Chronicle; Bill Whalen, Research Fellow, Hoover Institution, Stanford University; and Larry Gerston, political analyst, author and Professor, San Jose State University.

But she was irate about the way the discussion began: the better part of the first half hour was devoted to speculation, reports and analysis of the next presidential campaign. We’re talking about 2016.

Karl Rove gets the initial blame.

Rove’s now famous commentary on Hillary Clinton’s brain has itself been analyzed, reported and speculated upon ad nauseum: Was she injured in the 2012 fall? Did she fake it? Did it result in brain damage (“serious health issues”)? – and – bottom line: is her candidacy for the presidency in 2016 a done deal? This roundtable being a discussion of the past week’s news, it was perhaps inevitable that The Hillary Question would be the lead-off issue. So Zipperer led off with the Rove report and the panelists weighed in:

Whalen: “He (Rove) is trying to draw her into a ‘he said/ she said…’”

Gerston: “It’s a one-news-cycle thing… although health, age etc are legitimate issues.”

After these issues were legitimately raised and discussed, the panelists veered off into potential alternatives to Clinton: Massachusetts Governor Deval Patrick? (“If you can manage a good campaign, saying nice things about Hillary Clinton, you’re halfway there,” Whalen commented.) Or, what about San Antonio Mayor Julian Castro for Vice President?

Marinucci tossed out a couple of likely-looking Republicans, former Florida Governor Jeb Bush, Kentucky Senator Rand Paul

Much of the balance of the program was spent on discussion of the firing of New York Times Executive Editor Jill Abramson. Was she badly treated? Paid less than her male predecessors? Perhaps she was never quite the right fit for the job. Or, in the end, it might have been that she just could not get along with management. But the gender issue continues to hover. And in the “Week to Week” discussion this gave Carla Marinucci an opening to mention something that certainly rings true from this writer’s history of covering events dating back to the early 1960s.

“The first city council meeting I attended,” Marinucci reported, “the mayor asked me to get him coffee.” That, at least, may be a reason to forgive way-too-early discussions about a potential president of the United States – who happens to be a woman.

 

Can 70% of us be wrong?

Depending on which poll you read, anywhere from 55% to 70% of the people of these United States believe that abortion should be safe and legal. At the high end of that percentage are those who believe Roe v Wade should remain the law of the land.

How, then, could we be where we are? Today, more than half of the states have restrictions that effectively deny many women access to safe and legal abortion, never mind the Constitution.

Reproductive justice organizations, though, are far from caving.

Donna Crane, Vice President for Policy, NARAL Pro-Choice America, recently met with groups of supporters in the San Francisco Bay area to go over details of all this, and to reassure supporters that “although these (restrictive state laws) keep happening and we are losing ground, we’ve not lost power.” That power, Crane says, comes from the solid, and growing, percentage of people who want to keep abortion safe and legal and believe it is a woman’s right to control what happens to her own body.

“The public,” Crane says, “is not the problem. The problem is that our opponents have figured out how to get their way: they have switched (from working to overturn Roe v Wade) to the state legislatures. And there is a disconnect with American values.”

Crane outlined the dramatic increase in TRAP laws (Targeted Regulation of Abortion Providers), state regulations designed to put unnecessary burdens on abortion providers – but not other medical professionals – as a way to drive doctors out of practice and to make abortion care more difficult and expensive to obtain. Anti-choice measures in the states have increased from 18 in 1995 to a cumulative total of 807 by 2013. They include such requirements as unnecessary hallway widths in clinics, forced untrasounds, repeat visits and forcing physicians to lie to their patients. That’s just to name a few.

To this writer, none of this is about one side winning and the majority losing, it’s simply about justice. Anybody, anywhere with money and resources can access safe and legal abortion. But if you’re poor, down on your luck, living in a remote or impoverished area, and you want or need to terminate an unplanned pregnancy? Forget it. Legislators don’t have time for you; you probably don’t vote much. Politicians don’t care about you; you aren’t funding their campaigns. Anti-choice forces don’t care about you, only about your fetus. For you, there is no justice.

NARAL, however, has your back. Now we just need to get the rest of the 70% out front.,

 

Good genetic news for geezers

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The Three Fates, Flemish tapestry (probably Brussels ca 1510-1520) Victoria and Albert Musem, London. (WikiMedia)

 

Live longer, get smarter? We wish.

And this wish could some day come true, thanks to the gene variant KL-VS, whose friendlier name is the klotho gene. The klotho gene was already known to be associated with longer life. But a team of scientists at UCSF and the Gladstone Institutes, found that it also seems to make people smarter.

One in five of us has the klotho gene. As this writer is definitely older I had hoped to get in on the smarter, although I never cancelled the dementia provision of my advance directives. But in an interview with San Francisco Chronicle health writer Erin Allday Dr. Lennart Mucke, director of neurological research at Gladstone, said, “Klotho increases cognition but doesn’t replace aging-related decline. You’re just coming down from a higher level.” So much for immediate — or personal — optimism.

UCSF Assistant Professor of Neurology Dena Dubal was lead author of the study, findings of which were published recently in the journal Cell Reports. Dubal and Mucke say more studies are needed, but the  hope is that eventually klotho could help old brains — old human brains; so far we’re talking about mouse brains — function better.

This writer, having an old brain far too right-brained to follow neurological research very far, did at least complete several years of Greek at Randolph-Macon Woman’s College some years before Dena Dubal was born. But as my class notes are not handy I turned to Theoi.com, an online encyclopedia of Greek mythology, to find more about Klotho. (For the record, her name is more commonly spelled Clotho in classical texts, but most of all this pre-dates Spellcheck.)

Klotho and her sisters Lakhesis and Atropos where the daughters of Zeus and Themis, and in Greek mythology one couldn’t ask for better parentage. They were known as “The Fates,” or “The Moirai,” the goddesses who determined everyone’s destiny. According to Theoi, “They assigned to every person his or her fate or share in the scheme of things.” Clotho (on the right in the tapestry above) was “the Spinner,” who spun the thread of life. Lakhesis (in the center)  measured the thread of life and Atropos (on the left) cut the thread. Presumably they are arising from Themis; birthing in mythology was somewhat less complicated than today.

(It’s tempting to speculate on what it would mean to have too many Atropos gene variants, but that is going too far with all this.)

No amount of Googling turns up the scientist who named the KL-VS gene variant after Klotho, but he or she had an appropriate understanding of Greek mythology. If Klotho can indeed eventually lead to reactivating old brains, she will have spun us all a golden thread.

 

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