Reckonings: a journal of justice, hope and history

On Dying in America

Dying in America

By Muriel Gillick, M.D.

20 September 2014

Life in the End Zone

Reckonings editor’s prefatory note:

Muriel Gillick is a physician who publishes a weekly short essay on the science, medicine and experience of aging, moving as gracefully, productively, imaginatively and painlessly as possible through the last stage of our lives, and into the indelible mystery of death. Dr. Gillick says of herself, “I am a physician who specializes in the care of patients with advanced illness (palliative care) or advanced age (geriatrics), or both. I am also a professor at Harvard Medical School and a faculty member in the Department of Population Medicine with the Harvard Pilgrim Health Care Institute.”

Since it is where we are all headed, and tends to carry a burden of fear and aversion in our experience, especially as we age, death and the experience of dying have long drawn my attention. As to that aversion to death,  Geoffrey Gorer, a British anthropologist, wrote a powerful assessment in his short essay on “the pornography of death.” As Dan Meinwald has pointed out, "Gorer makes some interesting observations on the difference between cultural attitudes toward death in the Victorian era and our own. In his 1955 article, 'The Pornography of Death,' [Encounter, October 1955, pp.49-52]  Gorer points out that death is treated in twentieth century society much like sex was treated in the nineteenth century. The subject is avoided, especially with children, or spoken of in euphemisms if it cannot be avoided. Death now, like sex then, is hidden, an event which takes place behind closed doors. The opposite is also true: in the nineteenth century, death was discussed as freely and openly as sex is today. If, as Freud has postulated, society is founded upon--and defined by--its repressions, our society has undergone a psychological about-face since the nineteenth century.""

Dr. Gillick is doing her best, as you will see below, to bring about another, more informed and candid, about-face in this 21st century.

We need consciously to embrace dying—our own and others'—with the same mindfulness as we face the rest of our lives, with clarity, courage, compassion and open-hearted love.

For two more valuable perspectives on the Institute of Medicine's report, Dying in America, see the New York Times article, "Panel Urges Overhauling Health Care at End of Life," and a doctor's thoughtful op-ed essay, "When Medicine Is Futile."

Read, as well, a heart-wrenching and revealing story by Nina Bernstein in The Times on September 25, 2014: "Fighting to Honor a Father’s Last Wish: To Die at Home."

Finally, I vividly remember Bill Moyers's extraordinarily moving series of four films, produced in 2000:

On Our Own Terms: Moyers on Dying

"There is a great divide separating the kind of care Americans say they want at the end of life and what our culture currently provides. Surveys show that we want to die at home, free of pain, surrounded by the people we love. But the vast majority of us die in the hospital, alone, and experiencing unnecessary discomfort. Bill Moyers goes from the bedsides of the dying to the front lines of a movement to improve end-of-life care in On Our Own Terms: Moyers on Dying. Two years in production, this four-part, six-hour series crosses the country from hospitals to hospices to homes to capture some of the most intimate stories ever filmed and the most candid conversations ever shared with a television audience. The series includes: Living with Dying, A Different Kind of Care, A Death of One’s Own, and A Time to Change."  

                                                                                          JRB

 

The new IOM [Institute of Medicine] report, “Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life”, is a masterpiece. Written in the matter-of-fact language typical of non-partisan reports by committees of experts, it makes recommendations with which no rational person could possibly disagree. Of course a few extremists have already gone on record as disagreeing: a spokesman for the National Right-to-Life movement was quoted in the NY Times as claiming that the report’s alleged focus on “cost slashing” would reinforce “well-founded fears” that advance care planning is intended to “push patients to accept premature deaths.” The truth is that the report says relatively little about cost and what it does say is simply that a side effect of following its recommendations, suggestions made in the spirit of improving the quality of care and assuring that patients’ wishes are followed, will likely be a fall rather than a rise in the cost of health care.

The report includes “clinician-patient communication and advance care planning” as the topic of one of its 5 recommendations, and it is presumably this section that is the core of the right wing critique. But the explicit goal of advance care planning is to enable patients to participate in decisions about their health care and to make those decisions in accordance with their values, goals, and (informed) preferences. The report rightly recognizes that this isn’t going to happen unless clinicians take the initiative and that all the planning in the world will be inconsequential unless it is implemented when you become ill. The idea that discussing what kind of medical care you want near the end of life is tantamount to suicide is patently absurd. It would be more accurate to say that failing to discuss your wishes is tantamount to assuring you will spend your final days in the hospital, tethered to machines, and in pain.

While the recommendations of “Dying in America” are straightforward and unobjectionable, they are also cleverly designed to be “actionable,” to lead to concrete steps to promote change. Its recommendation regarding the delivery of care states that “government health insurers and care delivery programs, as well as private health insurers, should cover the provision of comprehensive care for individuals with advanced serious illness who are nearing the end of life.” This is in marked contrast to the language of the IOM’s 1998 report, “Approaching Death: Improving Care at the End of Life,” which addressed the same theme by urging that “people with advanced, potentially fatal illnesses and those close to them should be able to expect and receive reliable, skillful, and supportive care.” The only way that patients can expect to receive this kind of care is if the delivery system provides it.

In a similar spirit, “Dying in America” tackles professional education and development by urging that certification, licensure, and accreditation of clinicians require evidence of competency in palliative care. By contrast, the earlier report exhorted educators and other health professionals to “initiate changes in undergraduate, graduate, and continuing education to ensure that practitioners have relevant attitudes, knowledge, and skills to care well for dying patients.” Without specifying what those changes are or requiring that they be reflected in licensing exams or accreditation processes, not very much will—or did—happen.

Finally, the new report singles out payment systems as critical to promoting change, suggesting that health care delivery systems—the networks of hospitals, doctors, and clinics that actually provide medical care—must provide the services that comprise comprehensive palliative care and health insurers must pay for them. The preceding report acknowledged the role of financing, but embedded its recommendation amongst a series of quality improvement measures and spoke in very general terms of the need to “revise mechanisms for financing care so that they encourage rather than impede good end-of-life care.”

The weakest recommendations of both old and new reports on dying are for ongoing public education and engagement. Other than the specific suggestion that professional societies should publish brochures and that government agencies should support relevant research, there is little beyond a vague exhortation that faith-based organizations, consumer groups and others talk about the end of life. Previous public engagement campaigns, of which the Robert Wood Johnson’s multi-million dollar “Last Acts” program was the most spectacular and the “Conversation Project” the most recent, proved disappointing. Perhaps the forthcoming campaign, to be supported by the same anonymous donor who subsidized (but had no control over the contents of) the current report, will elaborate further.

My main concern is that this spectacular report will be filed away, as happens with so many comprehensive, thoughtful reports on all sorts of topics Certainly the IOM has had some notable successes. “To Err is Human: Building a Safer Health System,” issued in 1999, did shine a bright light on medical errors and catalyzed efforts to make American hospitals safer. But the IOM has produced 898 reports, according to its website. How many of those have had an impact and how much impact have they had?

…….

“Dying in America” lays out the facts and the arguments. It offers "actionable" recommendations, but the question is whether anyone will act on them.  The implementation campaign must begin now, otherwise this magnificent report on “dust to dust” will go into the dustbin.

 

 

Witness: Why We March (People's Climate March, September 21, 2014)

The following short and eloquent essay is, like the event next Sunday that it describes, an act of witness, with all the manifold power of that good word.

The People's Climate March will surely be, as these organizers say, "the largest rally about climate change in human history." The reasons to march are many and compelling, as they write.

"It's obviously too late to stop global warming entirely, but not too late to slow it down—and it's not too late, either, to simply pay witness to what we're losing, a world of great beauty and complexity and stability that has nurtured humanity [and indeed all creatures great and small] for thousands of years."

 

 

Why We March

Stepping Forth for a Planet in Peril

By Eddie Bautista, La Tonya Crisp-Sauray, and Bill McKibben

(reprinted from TomDispatch)

On Sunday, September 21st, a huge crowd will march through the middle of Manhattan. It will almost certainly be the largest rally about climate change in human history, and one of the largest political protests in many years in New York. More than 1,000 groups are coordinating the march -- environmental justice groups, faith groups, labor groups -- which means there’s no one policy ask. Instead, it’s designed to serve as a loud and pointed reminder to our leaders, gathering that week at the United Nations to discuss global warming, that the next great movement of the planet’s citizens centers on our survival and their pathetic inaction.

As a few of the march’s organizers, though, we can give some sense of why we, at least, are marching, words we think represent many of those who will gather at Columbus Circle for the walk through midtown Manhattan.

We march because the world has left the Holocene behind: scientists tell us that we’ve already raised the planet’s temperature almost one degree Celsius, and are on track for four or five by century’s end. We march because Hurricane Sandy filled the New York City subway system with salt water, reminding us that even one of the most powerful cities in the world is already vulnerable to slowly rising ocean levels.

We march because we know that climate change affects everyone, but its impacts are not equally felt: those who have contributed the least to causing the crisis are hit hardest, here and around the world. Communities on the frontlines of global warming are already paying a heavy price, in some cases losing the very land on which they live. This isn’t just about polar bears any more.

But since polar bears can’t march, we march for them, too, and for the rest of creation now poised on the verge of what biologists say will be the planet’s sixth great extinction event, one unequalled since the last time a huge asteroid struck the Earth 66 million years ago.

And we march for generations yet to come, our children, grandchildren, and their children, whose lives will be systematically impoverished and degraded. It’s the first time one century has wrecked the prospects of the millennia to come, and it makes us mad enough to march.

We march with hope, too. We see a few great examples around the world of how quickly we could make the transition to renewable energy. We know that if there were days this summer when Germany generated nearly 75% of its power from renewable sources of energy, the rest of us could, too -- especially in poorer nations around the equator that desperately need more energy. And we know that labor-intensive renewables would provide far more jobs than capital-intensive coal, gas, and oil.

And we march with some frustration: why haven’t our societies responded to 25 years of dire warnings from scientists? We’re not naïve; we know that the fossil fuel industry is the 1% of the 1%. But sometimes we think we shouldn’t have to march. If our system worked the way it should, the world would long ago have taken the obvious actions economists and policy gurus have recommended -- from taxing carbon to reflect the damage it causes to funding a massive World War II-scale transition to clean energy.

Marching is not all, or even most, of what we do. We advocate; we work to install solar panels; we push for sustainable transit. We know, though, that history shows marching is usually required, that reason rarely prevails on its own. (And we know that sometimes even marching isn’t enough; we’ve been to jail and we’ll likely be back.)

We’re tired of winning the argument and losing the fight. And so we march. We march for the beaches and the barrios. We march for summers when the cool breeze still comes down in the evening. We march because Exxon spends $100 million every day looking for more hydrocarbons, even though scientists tell us we already have far more in our reserves than we can safely burn. We march for those too weak from dengue fever and malaria to make the journey. We march because California has lost 63 trillion gallons of groundwater to the fierce drought that won’t end, and because the glaciers at the roof of Asia are disappearing. We march because researchers told the world in April that the West Antarctic ice sheet has begun to melt “irrevocably”; Greenland’s ice shield may soon follow suit; and the waters from those, as rising seas, will sooner or later drown the world’s coastlines and many of its great cities.

We don’t march because there’s any guarantee it will work. If you were a betting person, perhaps you’d say we have only modest hope of beating the financial might of the oil and gas barons and the governments in their thrall. It’s obviously too late to stop global warming entirely, but not too late to slow it down -- and it’s not too late, either, to simply pay witness to what we’re losing, a world of great beauty and complexity and stability that has nurtured humanity for thousands of years.
There’s a world to march for -- and a future, too. The only real question is why anyone wouldn’t march.

Eddie Bautista is executive director of the New York City Environmental Justice Alliance. LaTonya Crisp-Sauray is the recording secretary for the Transport Workers Union Local 100. Bill McKibben is the founder of350.org and a TomDispatch regular.

The legacy of Walt Kelly's Pogo Possum

 

Here is another legacy contribution from the early days of Reckonings (roughly 2003).

 

Pogo Possum

Pogo and the other inhabitants of the Okefenokee Swamp* disappeared from newspapers' comic strip pages shortly after their maker, Walt Kelly, died in 1973. I grew up with his world in the 1950s and 1960s.

I still tune in to Doonesbury now and then. I have been devoted to Calvin and Hobbes, Opus, and Gary Larson's wonderful upside down and sideways view of the world. For a time, as a child, the thoroughgoing loving kindness of Al Capp's shmoos captivated me. But Kelly's way with character, setting and especially language were satisfying as no other comic strip. As Brad Leithauser writes, "Pogo was different. It had depth, a madcap unpredictability, and a restive verbal playfulness; it was, in short, the only comic strip spun through the mind of a poet."

The denizens of the Swamp—Pogo, Albert the alligator, Beauregard the hound, Owl, Porky Pine, the ominous wildcat Simple J. Malarkey (modeled on the infamous Senator Joseph McCarthy), the blowhard bear P.T. Bridgeport, Miz Beaver and the fetching French skunk, Ma'm'selle Hepzibah, with whom Pogo is shyly enchanted—lent the strip a wonderful range of linguistic warp and woof, lyricism, affection and (mostly) friendly dissension the likes of which we have not seen since.

The pace of life in the Swamp is... well, like a swamp should be: comfortable, slow, yet with rich, unpredictable depth and color.

 

There are some genuine bad guys among the residents of the swamp—Mole with his omnipresent shades, and his sidekick The Deacon, for example—but they are more like literate rednecks than real evil. The only source of threatened (never realized) violence is the manifestly malignant Malarkey.

 

Some of Kelly's lines remain with me well over a quarter century after they were uttered. "We have met the enemy and he is us." Whenever I hear "Deck the Halls" at Christmas time, I find myself quietly singing, "Deck us all with Boston Charlie, tra la la la la, la la de da" And when I tend to go on longer than I should--a common professorial malady--I recall one of Pogo's rhymes:

Riddle you the little dew
And little do you do?
Little did is little done,
Tho' little did'll do.

I plan to weave into these pages at least a little did'll of Pogo's gentleness, kindness, exuberance and nonsense, without which this battered world would be much the poorer.

For those interested in a contemporary tribute to Kelly and his creation, and a sample of some of his characters' antics, I recommend Brad Leithauser's essay, "Lyrics in the Swamp," in the April 25, 2002 issue of The New York Review of Books. There are several collections of Pogo still available in paperback.

* The real Okefenokee Swamp, thankfully, is still with us, and is a heartening story of environmental intelligence at work.  Covering approximately 700 square miles of South Georgia and North Florida, it is a primitive wetland which harbors thousands of birds, mammals, reptiles, and amphibians, many of which are endangered or threatened. The north end of the swamp is bordered by pine forests and thick tangles of vegetation. Small water trails lead south to the open prairies and west to the Suwannee River. Nearly 400,000 acres of the Okefenokee were designated as the Okefenokee National Wildlife Refuge in 1937 (by none other than President Franklin D. Roosevelt), protecting the headwaters of the Suwannee and St. Marys Rivers from further development and depredation. For that, Pogo would be pleased and proud.

 

Whatever Happened to the Celebrated Jumping Frog of Calaveras County?

To use is mostly to re-use, or so I've found in writing as in life. So occasionally I'll be reclaiming and dusting off some stories that I wrote years ago in Reckonings. Here is an early favorite, first republished here eleven years ago. (Incidentally, The Calaveras County Fair and Jumping Frog Jubilee remains alive and well in Angels Camp, California.)

_________________________

 

Reprinting an entire newspaper article is hardly the ordinary style of Reckonings, much less one two-and-a-half years old. My excuse in this event is that the article is drawn from the archives of The Daily Reprobate, the sister publication of Reckonings for several years but with much more distinguished pedigree, having been (allegedly) founded in 1866 by Mark Twain when he was working as a journalist in San Francisco.

If there was a single piece of short fiction which launched Mark Twain's career as a writer, it was surely "The Celebrated Jumping Frog of Calaveras County." In the spring of 2003 the chief (and only) roving correspondent of The Reprobate proposed to its editor that an investigative article was in order to reveal the fate of jumping frogs in Calaveras County. Despite his reporter's incurable habit of profligacy with his expense account, the editor responded with enthusiasm, hoping I imagine for a small boost in circulation. His judgment was not off the mark; the boost, in fact, was not small. Readers of The Reprobate have asked that I reprint the article here, partially to draw a little more attention to Mr. Twain and the journal to which those readers remain so loyal, but mostly because they found the story such a representative piece of Americana. So here it is in its entirety.

 

The Daily Reprobate
Angels Camp, CA. May 18, 2003

Whatever Happened to the Celebrated Jumping Frog of Calaveras County?

Our founder has been held responsible for many things, including what's happened here in Angels Camp over the last 75 years. He would not be surprised.

Mr. Twain wrote--he might say transcribed--"The Celebrated Jumping Frog of Calaveras County" in his cabin here in 1865, the year before he foundedThe Daily Reprobate in San Francisco. After that he went on to other things, and in later years did not particularly care for the tale that kindled his fame, or the others with which it appeared in his first book, The Celebrated Jumping Frog Of Calaveras County and Other Sketches (1867). He wrote, "I hate to hear that infamous volume mentioned. I would be glad to know that every copy was burned & gone forever." But the good people of Angels Camp, in their leisurely way, began to awaken to an opportunity to put themselves on the map.

The Angels Boosters Club had existed for many years before 1928, but you might fairly say that their boosting never quite made it to the level of Jim Smiley's boot when he boosted Dan'l Webster to his best jumps. Jim Smiley's frog, you'll recall, was named Dan'l Webster, the original celebrated jumping frog of Calaveras County. But as I say, in 1928 things changed. People wanted to do something to celebrate the paving of Main Street. Somebody must've put a little extra mash in the Boosters' feed, because they not only cleared Main Street, which in those days still didn't take much doing. They organized the first ever real hoe down and jumping frog contest, in honor of Mark Twain and his famous story, and of course Jim Smiley and Dan'l Webster, and the nameless clever stranger who bested both of them (although he has been sadly eclipsed in subsequent mythology).

The celebration was such a success--about 15,000 people turned up, near to swamping every facility in Angels Camp--that it became an annual event. From that point, no one appeared to look back. You might say that had the Boosters known what they were letting loose, they would have had second thoughts, but that will be forever unknown. Now the world-famous Calaveras County Fair & Jumping Frog Jubilee is held on a spring weekend of each year at the Calaveras County Fairgrounds, better known as Frogtown, which has an eating emporium called the Frogeteria. Most of the older folks in Angels Camp and the surrounding area, if they're not commercially involved with the jubilee, head for the mountains or the beach that weekend, just as the sidewalks of the city are being lined with painted green frogs and bronze plaques, modeled on the Hollywood Walk of Fame.

Not being the kind of person to pass judgment on one of America's great pastimes--making an enormous amount out of very little and calling it progress--I'll just lay in here last year's poster for the Jubilee, and let it speak for itself.

All sorts of information is available on the Frogtown website (www.frogtown.org), which if not quite up to date is up to date enough, and offers a rich fund of information. For example, the world record Frog Jump was set in May of 1986 by "Rosie the Ribiter" jockeyed (yes, that's what it's called these days, and believe me it is delicate and demanding work) by Lee Giudici of Santa Clara, California. "Rosie the Ribiter" jumped an impressive 21 feet 5.75 inches, beating the old world record by 4.75 inches. Pretty decisive, I'd say. Rosie's record has stood now for 17 years. Jockeys come in all ages, from all over creation. The youngest winning jockey--there is considerable advantage in being very light--was Cody Shilts, a 3-year-old from Sacramento, California, in 1994.

There is, as you might have already suspected, an International Frog Jump Committee which presides over the Rules and the Sanctioning of Frog Jumps elsewhere in the world. (Winners are automatically eligible for the Grand Finals in Frogtown.) You may have some idea of the Rules of Frog Jumping from your knowledge of other sports (English croquet and cricket rules are especially helpful), but among the 13 principal ones are these:

•   In all jumps, the length will be measured in a straight line from the starting point to the point of landing on the third jump.

•   If a frog jumps into contestant's or team's equipment, the frog will be disqualified.

•   If a frog jumps into another person or association's equipment, the frog may have a re-jump or take the mark at the frog's landing spot. [That rule has been the occasion of some of the more dramatic encounters in the competition.]

•   Frog catchers shall be on the right or the left-hand corners of the stage and cannot  move until the frog has finished jumping.

•   Jockey must place frog with all four (4) feet, including toes, on the eight (8) inch  pad. [One year there was considerable controversy about the application of this rule to a frog who had only three feet. Finally he was allowed to compete, and did very well.]

•   Placement of the 1st jump must occur within 30 seconds.  Fifteen seconds  will be allowed for the two (2) subsequent jumps.  If the frog does not jump within  the allotted time, the frog is disqualified.

•   Touching the frog after it leaves the pad is cause for immediate disqualification.

•   Evidence of drugging or jumping the same frog twice will result in disqualification, forfeit of prizes, and public humiliation.

The frogs pictured below were spectators, not competitors. They were, in fact, rather more interested in each other than in the festivities.

Now, one last chapter in this story, to bring it fully up to date. The 2003 Jubilee was held from May 15 to 18.  Its success was marred only by a peculiar sign of the times, as reported below by the Associated Press.

May 18, 2003

Wildlife Officials Fret at Calaveras Frog Fair

by the Associated Press

ANGELS CAMP, Calif., May 17.  Wildlife officials are visiting the Calaveras County Fair and Frog Jumping Jubilee this weekend to make sure that the celebrated leapers do not spread disease and are not released into ponds where they can push out native frogs.

"I bet you Mark Twain is laughing his tail off," said Warren King, manager of the fair, which ends on Sunday. "He created all this just from a little short story, his first published work. Now look at all this controversy and environmental concerns. I hope he's proud of the way we're handling this."

The inspections at the contest are meant to protect amphibians in the Sierra Nevada, which have lost habitat and been harmed by pesticides.

"Bringing a whole group of diverse populations together and then spreading them out again is a perfect model for spreading disease, as it is in humans," said Ed Pert, chief of the fisheries programs of the California Department of Fish and Game.

The department wants to make sure that the competitors, aggressive nonnative bullfrogs, are not released into the few remaining places where native red-legged and yellow-legged frogs survive.

Returning frogs to nature violates California law, but an obscure provision in the Fish and Game Code exempts frog-jumping contests.

At the Calaveras County event, now in its 75th year, wildlife officers simply ask operators and contestants to cooperate. Green fliers urge people to be "frog-friendly" and give their frogs to fair organizers after the contest.

The wildlife officials were generally reassured after inspecting the "frog condo," where about 300 frogs collected by organizers can be rented by small-time participants, and an operation by a major competitor, John Hand of Sweet Home, Ore.

Mr. Hand's 300 frogs were captured in the nights before the contest and are housed in plastic boxes in an insulated trailer. About 150 of the most energetic compete, then all of the frogs are returned to the ponds and sloughs where they were found.

The jumping contest draws about 2,000 bullfrogs and more than 40,000 visitors to Angels Camp, an old Sierra gold-mining town in Calaveras County, 90 miles east of San Francisco.

We at The Reprobate consider the anonymous writer of that report, an unsung stringer for the AP, deserving of recognition by her fellow journalists. She resisted our offers of fame and fortune,  and is no doubt the wiser for it. She told us, however, that the editors at the Associated Press had given her a strict word limit, and she was sorry to have to cut out the part about the animal rights activists. We offered her a chance--small recompense for her hospitality--to sneak it in here as a coda.

The animal rights activists, unlike Fish and Game, with whom they are not on speaking terms, want just to shut the whole contest down because of its cruelty to frogs. The activists' main spokesperson this year was Ms. Larisa Briski, who ironically happened to be the 1988 Miss Calaveras County and used to participate in the frog contest. One could tell by her passion that she had first hand experience. "I learned from my own mistakes... These poor frogs are sort of dragged out of nature and then made to jump on command, more or less, on a stage in front of a big crowd of people in the summer sun. This, to any animal rights activist, is cruel and unnecessary."  And humiliating.