But you know I'm so glad to be on my own
Still somehow the slightest touch of a stranger
Can set up trembling in my bones
I know no one's going to show me everything
We all come and go unknown
Each so deep and superficial
Between the forceps and the stone
Well I looked at the granite markers
Those tribute to finality to eternity
And then I looked at myself here
Chicken scratching for my immortality
In the church they light the candles
And the wax rolls down like tears
There's the hope and the hopelessness
I've witnessed thirty years
We're only particles of change I know I know
Orbiting around the sun..."
Yeah, it's a shameless "click bait" post headline,I suppose. But, now that I have your attention...
Semi-scientific speculative empirical estimates have it that perhaps 108 billion humans have lived on this planet across the span of the evolved homo sapiens. We're close to 8 billion alive today. Add to the calculation roughly 20 lbs of average dry skeletal bone weight of those 100 billion or so who have passed on, and you have a 'WTF?' headline -- "A billion tons of human bones" (even at the risk of some possible overestimation).
I recently finished two books on dying and death. Yes, the nominal core topic of this blog is that of health care delivery InfoTech, but all health care eventually ends up with the care of the dying (and the too-frequent concomitant lack or inadequacy of it) and the deaths we all inevitably face. As my mentor Dr. Brent James pointed out in the opening plenary of our 1994 Intermountain Healthcare CQI training in Salt Lake City, "let's not kid ourselves that we're going to 'QI' our way out of the larger societal problem. Delivering the most effective care today only serves to ensure that you will face an older and much sicker patient in the future."
Ann Neumann's justifiably acclaimed new book is a must-read, one eloquently covering with considerable nuance the breadth of difficult issues surrounding the end of life. Cited in detail further down. Also, I wrote a companion review over at Medium.com.
Loren Mayshark's book is a quick and enjoyable read, a mostly philosophical short tour of the topic.
I have often thought about the cycle of our lives and how it fits into the broader cycles of nature. Many creatures have cyclical spawning migrations, which lead them back to the place of their birth, where they will give life to the next generation. Human beings are not beholden to such patterns, which makes the nature of our birth, life, and death cycles different from those of many other creatures. Although many of us have children, it is not an imperative. It seems that much of our lives are spent searching for meaning rather than being tethered to an innate urge to fulfill a natural pilgrimage to reproduction and death. Although reproduction has a strong presence in our lives, it is not as inextricably linked to death as it is for other species. We are part of the animal kingdom but our evolution has placed us in a different rhythm. This makes us consider how we are linked to the greater picture.
Eva Saulitis is a marine biologist and writer who has deeply considered these questions, and her experiences give her a unique perspective on life and death. Every September for twenty-six years, Saulitis visited the same scene of black humpback salmon fighting their way upstream to spawn and die. Each year was a unique variation of a gory slaughter, with salmon ripped apart by bears, carried to death in the talons of bald eagles, or smashed against rocks by currents and members of their own species. Propelled by a mysterious, innate sense of duty, the salmon would give their utmost in order to birth a new generation. They were destined to spawn new life or feed the fire burning in the stomachs of the predators that flourished on their flesh.
Are the salmon aware of their impending doom? Do they, like humans, have to live with the central existential angst, stemming from the fact that one day they would cease to be? It is important to recognize that, in one way or another, all creatures are beholden to death.
The salmon scene in Saulitis’s twenty-sixth year of observation was very different in her perception than it had been before, for she had been recently diagnosed with metastatic breast cancer, a terminal condition. In her most recent bout with the disease she’d had surgery as part of a six-day stint in the hospital where she endured untold pain and the difficulty of being hooked to various machines. This led her to observe: “In the hospital, I learned to fear something more than death: existence dependent upon technology, machines, sterile procedures, hoses, pumps, chemicals easing one kind of pain only to feed a psychic other. Existence apart from dirt, mud, muck, wind gust, crow caw, fishy orca breath, bog musk, deer track, rain squall, bear scat.” She continues, explaining her observation by offering a philosophical reality with far-reaching dimensions: “The whole ordeal was a necessary palliation, a stint of suffering to grant me long-term physical freedom. And yet it smacked of the way people too often spend their last days alive, and it really scared me.”
We can’t say with certainty that we are the only species that is aware of its own death. But there are no experts on what lies beyond the boundaries of the living world. There are people who have had near-death experiences and can recount, in great detail, what they believe they have seen beyond the curtain. As Saulitis says in her article “Into the Wild Darkness,” we are still in the dark because “we know more about the universe and the mind of an octopus than we do about death’s true nature. Only that it is terrible and inescapable, and it is wild.”
It is important to remember a fact that was not mentioned in Saulitis’s article about this natural deadly dance with eternity. It is the law of the conservation of energy: energy cannot be created or destroyed. As far as we know, all the energy that exists in the universe always has been, and as far as we can tell always will be, so perhaps we do not die; we simply lose our human bodies and change form.
In the United States, we often prolong people’s lives far beyond the point that they can function in a dignified way. We force people to live as human puddles, hooked into tubes feeding them medications that are imperative to survival, slowly ebbing away until eventually passing over to the other side. About 32 percent of the U.S. Medicare budget goes to end-of-life care. To wither away in a hospital bed jammed full of tubes, needles, and chemicals does not do justice to the dignity of the person who was once a fully functioning human being.
Saulitis eloquently lights on this uncomfortable truth as she meditates on her own condition and how different it is from the salmons’ last stand. She says that “facing death in a death-phobic culture is lonely. But in wild places like Prince William Sound or the woods and sloughs behind my house, it is different. The salmon dying in their stream tell me I am not alone. The evidence is everywhere: in the skull of an immature eagle I found in the woods; in the bones of a moose in the gully below my house; in the corpse of a wasp on the windowsill; in the fall of a birch leaf from its branch. These things tell me death is true, right, graceful; not tragic, not failure, not defeat.”Loren had seen an Amazon.com comment I'd left under Ann Neumann's book (griping about the price of the Kindle edition, a snit regarding which I've since gotten over), and reached out to ask if I might read and review his book.
Mayshark, Loren (2016-01-01). Death: An Exploration: Learning To Embrace Life's Most Feared Mystery (Death, Dying, Grieving, Grief, Mortality, Loss, Coping with Death Book 1) (Kindle Locations 157-198). Red Scorpion Press. Kindle Edition.
From the Amazon blurb:
This book will help anyone who is interested in learning more about death, coping with a loss, approaching death, or explaining death to a child. It is an exploratory journey that includes multiple viewpoints, including Steve Jobs’s embrace of his death, Ray Kurzweil’s striving for immortality, and Joseph Campbell’s view of death as the “ornament of life.” The book looks at death from the perspectives of atheists, Christians, and Tibetan Buddhists, among many others. Interestingly, it considers the often unexplored aspects such as the curious relationship between death and ayahuasca. It is a guidebook, offering insights and comfort on a topic that many find frightening or macabre...I enjoyed it. Nicely written. It's worth your time (and, at $2.99 Kindle price, well worth the small cost).
Beyond (and perhaps owing to) its relative brevity, I found the lack of direct and pertinent reference to Buddhist thought a bit odd, though. To the extent that I have any "spiritual" leaning, it's (small 'b') buddhist. The only peeps who ever made much sense to me.
apropos, I reflexively reach for my Alan Watts.
Ever since I can remember anything at all, the light, the smell, the sound, and motion of the sea have been pure magic. Even the mere intimation of its presence— gulls flying a little way inland, the quality of light in the sky beyond hills which screen it from view, the lowing of foghorns in the night. If ever I have to get away from it all, and in the words of the Chinese poet “wash all the wrongs of life from my pores,” there is simply nothing better than to climb out onto a rock, and sit for hours with nothing in sight but sea and sky. Although the rhythm of the waves beats a kind of time, it is not clock or calendar time. It has no urgency. It happens to be timeless time. I know that I am listening to a rhythm which has been just the same for millions of years, and it takes me out of a world of relentlessly ticking clocks. Clocks for some reason or other always seem to be marching, and, as with armies, marching is never to anything but doom. But in the motion of waves there is no marching rhythm. It harmonizes with our very breathing. It does not count our days. Its pulse is not in the stingy spirit of measuring, of marking out how much still remains. It is the breathing of eternity, like the God Brahma of Indian mythology inhaling and exhaling, manifesting and dissolving the worlds, forever. As a mere conception this might sound appallingly monotonous, until you come to listen to the breaking and washing of waves.
Thus, I have come to live right on the edge of the water. I have a studio, library, a place for writing on an old ferryboat tied up on the waterfront of Sausalito, north of San Francisco. I suppose this place is the nearest thing in America to a Mediterranean fishing village. Steep hills clustered with little houses, and below along the rim of the bay a forest of masts rocking almost imperceptibly against a background of water and wooded promontories. In some ways this is a rather messy waterfront, not just piers and boats, but junkyards, industrial buildings, and all the inevitable “litter-ature” of our culture. But somehow the land-and-seascape absorbs and pacifies the mess. Sheds and shacks thrown together out of old timbers and plywood, heaps of disused lumber, rusted machinery, and rotting hulls— all of this is transformed in the beneficent presence of the sea.
Perhaps it is the quality of the light, especially early in the morning and towards evening, when the distinction between sky and water becomes uncertain, when the whole of space becomes opalescent in a sort of pearly luminous grey, and when the rising or setting moon is straw yellow. In this light all the rambling mess of sheds and junkyards is magical, blessed with the patterns of masts and ropes and boats at anchor. It all puts me in mind of landfalls a long way off, and all the voyages one has dreamed of. I look out now across a wide space of nothing but water and birds ending in a line of green slopes with clumps of trees. Right over the edge of the boat the water contains seemingly just under the surface a ceaselessly moving network of reflected sunlight through which a school of very tiny fish passes delightfully uncaught. Yet only a few yards from where we are moored, tackle shops sell the salmon and crabs with which this particular area abounds.
This is the paradox of the ocean. Sand, flying spray, pebbles and shells, driftwood, sparkling water, space incredibly luminous with cloudbanks along horizons underlying skies into which one’s imagination can reach without end. But under the surface of both sky and water there is the grim business of preying. Men and birds against fish, fish against fish. The tortuous process of life continuing by the painful transformation of one form or body into another. To creatures who do not anticipate and reflect imaginatively on this holocaust of eating and being eaten, this is perhaps not so terrible. But poor man! Skillful beyond all other animals, by being able to think in time, and abstractly knowing the future, he dies before he is dead. He shrinks from the shark’s teeth before they bite him, and he dreads the alien germ long, long before its banquet begins.
At this moment I see a gull that has picked a crab from a tidepool. Sprawled now upon the sand, the crab shrinks from the walls of its shell which is resounding to the tap, tap, tap of the gull’s beak. Who’s that knocking at my door?
I suppose the shell of a crab, a clam, or a mussel is the boundary of its universe. To put ourselves into their position, we would have to imagine a knocking sound louder and louder, a sound which doesn’t come from anywhere in particular, from some door, the walls, the ceiling, the floor. No, instead think of a knocking which comes from everywhere, beating against all the boundaries of space and consciousness, intruding like some utterly unknown dimension into our known and familiar world.
“Let me in! Let me in! I love you so much I could eat you. I love you to the very core, especially the soft, juicy parts, the vitals most tender and alive. Surrender to this agony, and you will be transformed into Me. Dying to yourself you will become alive as Me. We shall all be changed in a moment, in the twinkling of an eye, on the morning when the last trumpet sounds. For behold! I am He who stands at the door and knocks.”
There is simply no way of getting around all this. The gull can’t really be said to be rapacious or greedy. It’s just that his being alive at all is the same thing as eating crabs. Sea birds are transformations of fish; men are transformations of wheat, steers, and chickens. A love for the food is the very agony of the food. To object to this inseparability of pleasure and pain, life and death, is to object to existence. But, of course, we cannot help objecting when our time comes. Objecting to pain is pain. So far as we know, the gull and the fish don’t philosophize. They appear instead to enjoy life when they are eating, and hate it when being eaten. But they don’t reflect upon the process as a whole and say, “How rough to have to work so hard for a living,” or, “It’s just hell having to watch out all the time for those damn gulls.” I’m sure that in their world this is all something that just goes along with life like having eyes or feet or wings.
But man, with his astonishing ability to stand aside from himself and think about himself— in short, to comment on life, man has done something which confuses his own existence down to its roots. For the more sensitive he is, the more he finds the very act of living in conflict with his moral conscience. Upon reflection a universe so arranged that there is no way of living except by destroying other lives seems to be a hideous mistake, not a divine but a devilish creation...'eh?
Watts, Alan W. (2011-10-19). Cloud-hidden, Whereabouts Unknown: A Mountain Journal (pp. 3-7). Knopf Doubleday Publishing Group. Kindle Edition.
Before getting to Ann's incredible book, let me first go back some decades to one of my favorite writers, Richard Selzer, MD. Some pithy, vivid short notes on the actual mechanics of departing.
At last—at last the bones appear, clean and white and dry. Reek and mangle abate; diminuendo the buzz and crawl. All, all is eaten. All is done. Hard endlessness is here even as the revelers abandon the skeleton.
THE CORPSESelzer, Richard (1996-04-15). Mortal Lessons: Notes on the Art of Surgery (Harvest Book) (Kindle Locations 1368-1483). Houghton Mifflin Harcourt. Kindle Edition.
[Homage to Sir Thomas Browne]
Shall I tell you once more how it happens?
Even though you know, don’t you? You were born with the horror stamped upon you, like a fingerprint. All these years you have lived you have known. I but remind your memory, confirm the fear that has always been prime. Yet the facts have a force of their insolent own.
Wine is best made in a cellar, on a stone floor. Crush grapes in a barrel such that each grape is burst. When the barrel is three-quarters full, cover it with a fine-mesh cloth, and wait. In three days, an ear placed low over the mash will detect a faint crackling, which murmur, in two more days, rises to a continuous giggle. Only the rendering of fat or a forest fire far away makes such a sound. It is the song of fermentation! Remove the cloth and examine closely. The eye is startled by a bubble on the surface. Was it there and had it gone unnoticed? Or is it newly come?
But soon enough more beads gather in little colonies, winking and lining up at the brim. Stagnant fluid forms. It begins to turn. Slow currents carry bits of stem and grape meat on voyages of an inch or so. The pace quickens. The level rises. On the sixth day, the barrel is almost full. The teem must be poked down with a stick. The air of the cellar is dizzy with fruit flies and droplets of smell. On the seventh day, the fluid is racked into the second barrel for aging. It is wine.
Thus is the fruit of the earth taken, its flesh torn. Thus is it given over to standing, toward rot. It is the principle of corruption, the death of what is, the birth of what is to be. You are wine...
Dead, the body is somehow more solid, more massive. The shrink of dying is past. It is as though only moments before a wind had kept it aloft, and now, settled, it is only what it is— a mass, declaring itself, an ugly emphasis. Almost at once the skin changes color, from pink-highlighted yellow to gray-tinted blue. The eyes are open and lackluster; something, a bright dust, had been blown away, leaving the globes smoky . And there is an absolute limpness. Hours later, the neck and limbs are drawn up into a semiflexion, in the attitude of one who has just received a blow to the solar plexus.
Examine once more the eyes. How dull the cornea, this globe bereft of tension. Notice how the eyeball pits at the pressure of my fingernail. Whereas the front of your body is now drained of color, the back, upon which you rest, is found to be deeply violet. Even here, even now, gravity works upon the blood. In twenty-four hours, your untended body resumes its flaccidity, resigned to this everlasting posture.
You stay thus.
You do not die all at once. Some tissues live on for minutes, even hours, giving still their little cellular shrieks, molecular echoes of the agony of the whole corpus. Here and there a spray of nerves dances on. True, the heart stops; the blood no longer courses; the electricity of the brain sputters, then shuts down. Death is now pronounceable. But there are outposts where clusters of cells yet shine, besieged, little lights blinking in the advancing darkness. Doomed soldiers, they battle on. Until Death has secured the premises all to itself.
The silence, the darkness, is not for long. That which was for a moment dead leaps most sumptuously to life. There is a busyness gathering. It grows fierce.
There is to be a feast. The rich table has been set. The board groans. The guests have already arrived, numberless bacteria that had, in life, dwelt in saprophytic harmony with their host. Their turn now! Charged, they press against the membrane barriers, break through the new softness, sweep across plains of tissue, devouring, belching gas— a gas that puffs eyelids, cheeks, abdomen into bladders of murderous vapor. The slimmest man takes on the bloat of corpulence. Your swollen belly bursts with a ripping sound, followed by a long mean hiss.
And they are at large! Blisters appear upon the skin, enlarge, coalesce, blast, leaving brownish puddles in the declivities. You are becoming gravy. Arriving for the banquet late, of course, and all the more ravenous for it, are the twin sisters Calliphora and raucous Lucilia, the omnipresent greenbottle flies, their costumes metallic sequins. Their thousands of eggs are laid upon the meat, and soon the mass is wavy with the humped creamy backs of maggots nosing, crowding, hungrily absorbed. Gray sprays of fungus sprout in the resulting marinade, and there lacks only a mushroom growing from the nose.
At last—at last the bones appear, clean and white and dry. Reek and mangle abate; diminuendo the buzz and crawl. All, all is eaten. All is done. Hard endlessness is here even as the revelers abandon the skeleton.
You are alone, yet again.
I first posted that on one of my other blogs. See A speculation on the "afterlife."
I guess prior getting to "The Good Death" I should also mention an earlier, frequently-cited seminal work on dying.
Let us now see and hear the delightful Ann Neumann, in her own words.
Her book had me by turns heartbroken, humbled, amazed, unsurprised, and infuriated. I could not recommend it more highly.
I tweeted during a break in my weekly Muttville.org volunteer shift (I'd been reading her book between my basement laundry wash & dry loads):
Her deft, seamless iterative weaving in and out of pained, candid personal reflections to pointed, thoroughly researched and often searing policy observations had me in total thrall.
Terminal restlessness, the hospice doctor had told us. At the end of life, organs begin to shut down. Old ladies who hadn’t left their beds in years suddenly rise up with unimaginable strength to move furniture. Frail, aged men who have been silent for months grow angry and yell profanity at anyone who passes by. They are agitated, violent. They want to go. Our father wanted to go home, and he was sure this was not it. I tried citing the evidence to the contrary. I pointed out the ceiling he had hung, the walls he had painted, and the carpet he had laid. I showed him photos of the house he was in, the same stone house we had built together three decades before, mixing mortar and gathering stone as a family. The same house in which he wanted to die and to which I had returned to help him do so. But he did not believe me.Notwithstanding my initial grousing regarding the Kindle edition price, I'm now in for a total of $44.35, having purchased both the hardcover and then the Kindle version (I hate to deface great books with highlighter smears and red pen margin notes).
When a nurse from hospice arrived, my sister and I cried with relief and exhaustion. We couldn’t keep him calm. We hadn’t slept in days. He kicked at us and swung his twisted arms— at us, his daughters, as if he didn’t know us anymore...
...The schedule that had kept me listening and feeding and dosing and restraining for three months was over, my responsibilities usurped by the uniformed and capable. That night, as I lay on the sofa at the foot of his bed, nurses came and went with syringes and incontinence pads in two-hour intervals. Then, after ten years of eating away at his body like a gluttonous parasite, his cancer finally destroyed them both.
In the lobby, family who had come to spend a moment with him, to touch the cooling skin on his hand, to whisper last thoughts to his deaf corpse, now sat silently with their spouses. Their coats smelled of cold winter air. Their eyes reflected the deaths of the past eight months: my grandfather, ninety-four, of old age; my cousin, thirty-seven, of Hodgkin’s lymphoma; and now my father, sixty, of non-Hodgkin’s lymphoma.
“What do we do now?” I asked my sister. She gave the exit door at the end of the hallway a faraway look; it opened onto the stubble of a sheared winter cornfield. Quietly, a mortician opened the door and pushed a stretcher inside. Another extra, like the septic tank man, come to clean up our mess. Without looking at us, he steered into our room with a wide turn.
The mortician unfolded a square of clear plastic— the stiff, heavy kind that painters use to protect floors. Nurses straightened my father’s arms and legs and then, with a sheet, lifted his body onto the stretcher. “This is my Dad,” I told the mortician as he wrapped the plastic, first over Dad’s legs and then his arms and hands, taping the protective layers. The plastic crinkled like a tent. In less than two days, gases in my father’s body would push fluids, fecal matter, and urine out of his orifices. Morticians call it the surge. Then, when his name or number came up in the queue, they would push his body into a furnace and reduce it to four pounds of ash in a white box that my sister would pick up and place in the corner of the rec room, where my father had always sat...
Neumann, Ann (2016-02-16). The Good Death: An Exploration of Dying in America (pp. 2-5). Beacon Press. Kindle Edition.
Worth every penny.
Ms. Neumann traverses the topical breadth bearing on dying and death with a fine analytic eye and elegant, empathic writing style. e.g.,
- Her own service as a hospice volunteer in the wake of her father's death;
- "Death with Dignity"/"Right to Die" policy and practice (including the clinical and policy nuances of "medical futility" and "physician-assisted suicide");
- "Right to Life" issues (including the radioactively contentious reproductive rights);
- Forced "physiologic support" feeding of both PVS patients (Persistent Vegetative State) and prisoners;
- The undue health care policy influence of religious institutions -- most notably the Catholic church (in particular as it goes to "ObamaCare");
- The fractious Disability Rights movement;
- Hospice reimbursement policy (e.g. Medicare, Medicare, private payers);
- Aggregate U.S. NHE political issues (National Health Expenditure) bearing on the gamut of increasingly costly end-of-life circumstances in a rapidly greying population,
Terri Schiavo’s death was particularly poignant for me. It consumed the media in the spring of 2005, as my father’s health continued to decline. His options for stopping his non-Hodgkin’s lymphoma had run out, and he told us that when we were home for our family’s annual Easter gathering, he wanted to discuss his will. We celebrated the holiday, which occurred at the end of March, early that year, with ham loaf and Amish crackers, the traditional fare of our Mennonite family. And we doted on my ninety-five-year-old grandfather whom we’d sprung from the Lancaster Mennonite Home for the day. After waving goodbye to our aunts, uncles, and cousins, after clearing the tables and washing the dishes, Dad sat us down to discuss his will. He pulled the bound pages from a manila envelope. On the TV behind us, reporters interviewed protesters about their views on the removal of Schiavo’s feeding tube as Dad told us that he wanted to be cremated, what his exact financial assets were, what would happen to the house we were in. Conservative senators and representatives made impassioned pleas for Schiavo’s life as we sobbed, embracing each other and our grief. Our grandfather died two days later. Our family gathered again for his funeral. I watched my father as he sat next to me in the church pew during the memorial service. I knew that my turn was imminent.Remember it all well. When the next "Schiavo" comes along, we'll likely again go through the entire lurid grandstanding political spectacle anew.
Schiavo had collapsed in the kitchen of her home early one February morning in 1990. She had stopped breathing for more than four minutes, a period of time that doctors roughly consider the window within which patients can recover. Her husband had found her on the floor and called 911. When paramedics arrived, they resuscitated her heart beat and breathing and rushed her to a nearby hospital, where she was eventually given a feeding tube. For years, Terri’s husband and her family, the Schindlers, attended her, hoping that therapy would restore her consciousness. But ultimately, Michael Schiavo accepted that his wife would not recover. Her family, Roman Catholics, did not. They became estranged when Michael sought to legally have Terri’s feeding tube removed.
What unfolded after their rift is the stuff of legal, political, medical, and personal nightmares. Michael, his wife’s legal guardian, received permission from a district judge in 2001 to remove Terri’s feeding tube after providing witnesses and evidence that she would have wanted it. The tube was removed, but two days later, the Schindlers appealed the decision, saying that “Terri was a devout Roman Catholic who would not wish to violate the Church’s teachings on euthanasia by refusing nutrition and hydration.” The feeding tube was reinserted. Again in 2003, Michael received court permission to have his wife’s feeding tube removed. While the decision was on appeal, the Schindlers recruited Randall Terry, an antiabortion activist who had founded Operation Rescue, an organization known for staging protests and garnering media attention, to take up their cause. If the courts were not able to help them, they were willing to appeal to the broader public. Terry arranged vigils and protests outside the hospice where Terri Schiavo was a patient and put pressure on Florida governor Jeb Bush, a “pro-life” Republican and brother of the sitting president. Jeb Bush called a special legislative session the night of Sunday, October 19, 2003, and “Terri’s Law,” which overrode the courts and ordered the tube again be reinstated, was passed unanimously the following afternoon. Two hours later, the hospice was served with an order to reinstate the tube. Terri Schiavo’s longtime doctor chose to resign rather than do so; another doctor at the facility performed the reinsertion.
But in 2004, the Florida Supreme Court overturned Terri’s Law, ruling it unconstitutional. Governor Bush tried to appeal, but the US Supreme Court refused to hear the case. A new date was set for final removal by Florida District Judge George Greer: March 18 at 1 p.m. With no remaining options, the Schindlers met with the governor and other important officials. They enlisted the support of key antiabortion legislators, and House Majority Leader Tom DeLay headed an effort, according to William Colby in Unplugged: Reclaiming our Right to Die in America, to “pass a bill that would move the Schiavo case to federal courts,” an effort meant to bypass Greer’s chamber. Although most legislators had already headed home for the Easter break, those who remained decided in the early morning hours of Friday, March 18, to issue subpoenas “to trigger federal protection for Terri Schiavo.” But one week later, writes Colby, Judge Greer called a hearing to tell federal legislators they had no jurisdiction in the case. “My order will stand,” he told them.
An hour later, Terri Schiavo’s feeding tube was again removed. Legislators called a “rare Saturday night session of the US Senate that was attended by only three senators, Senate Majority Leader Bill Frist, Mel Martinez of Florida, and John Warner from Virginia. Senator Frist said, ‘Under the legislation we will soon consider, Terri Schiavo will have another chance,’” Colby writes. The federal law, titled “For the relief of the parents of Theresa Marie Schiavo,” was brought before emergency sessions in both the House and Senate the following day, Palm Sunday. The Senate passed the bill, which became known as the Palm Sunday Compromise, unanimously, but in the House, the bill was blocked by eight Democrats who challenged it on weekend rules, requiring house leaders to wait until after midnight to pass it. President George W. Bush, informed of the bill’s progress, curtailed his vacation and returned to Washington that day to sign it.
In the US House on Sunday night, DeLay stood to say, according to a CNN transcript of the session, “A young woman in Florida is being dehydrated and starved to death. For fifty-eight long hours her mouth has been parched and her hunger pains have been throbbing. If we do not act she will die of thirst. However helpless, Mr. Speaker, she is alive. She is still one of us. And this cannot stand. Terri Schiavo has survived her passion weekend and she has not been forsaken. No more words, Mr. Speaker. She’s waiting. The members are here. The hour has come. Mr. Speaker, call the vote.” The bill was passed at 12: 41 a.m., and President Bush signed it into law at 1: 11 a.m. But repeatedly, federal and Florida district judges refused to recognize the bill. New appeals were submitted and turned down. New bills, hastily written and frantically debated, failed to pass in Florida. Governor Bush threatened to use the Department of Children and Families to take custody of Schiavo by order. David Gibbs, the Schindler’s lawyer and president of the Christian Law Association, called Michael Schiavo a “murderer.” More motions were submitted and denied. Protesters called hospice workers “Nazis,” “cowards,” and “murderers.” Judge Greer wore a bullet-proof vest. His wife received a delivery of dead flowers; a card tucked into them read “no food, no water.” At the Schindlers’ request, the Reverend Jesse Jackson flew to Florida. Father Frank Pavone, national director of Priests for Life and president of the National Pro-Life Religious Council, accompanied Terri’s siblings, Bobby and Suzanne, on their last visit to their sister’s room. Terri Schiavo died on March 31, thirteen days after her feeding tube was removed.
To the Catholic Church, the Quinlan and Cruzan cases were tragedies, but Schiavo’s death proved a pattern, one it needed to take action to stop. The recent legalization of aid in dying in Oregon, a practice that the church considered, like removal of Schiavo’s tube, to be “euthanasia,” compounded their need to address end-of-life issues. As the second-largest provider of health care in the United States (Veteran’s Affairs is the first), church leaders realized that their authority was being challenged by the US justice system. Terri’s parents, Robert and Mary, and siblings, Bobby and Suzanne, felt that Terri was not terminal, that with proper care she could have lived a long and healthy life. They insisted that she had been conscious and able to recognize them. Bobby Schindler has since said that his sister was killed by the state.
An autopsy performed on Terri Schiavo after her death definitively proved that she was incapable of feeling pain; in the years after her debilitating injury, her brain had atrophied to the point where only part of her brain stem remained... [ibid, 96-100]
Some thoughts near the end of the book:
Doctors know much about the physical horrors that medicine can exact on frail bodies. They have seen the torture that tests and drugs and “extraordinary measures” can cause. In a 2014 study, “Do Unto Others,” by Vyjeyanthi S. Periyakoil, Eric Neri, Ann Fong, and Helena Kraemer, two thousand doctors were asked what they would want if they were given a terminal diagnosis. Fifty-five percent said palliative care, 43 percent said hospice care, and 39 percent said do not resuscitate. And yet “extraordinary measures” are what most people get, when they could be at home, like Evelyn, living out what’s left of their lives. Why is this so? Why would doctors avoid medicine’s advancements in their last days, yet inflict it on their patients?
“Our current default is ‘doing,’ but in any serious illness there comes a tipping point where the high-intensity treatment becomes more of a burden than the disease itself,” Periyakoil told Stanford’s Tracie White about the study in 2014. “[ But] we don’t train doctors to talk [to patients about end of life] or reward them for talking. We train them to do and reward them for doing. The system needs to be changed.” [ibid, pp 190-191]Yes, but, can you say "MedMal?"
One last excerpt citation:
In our collective effort to avoid death at all costs, we are all complicit in a painful and costly phenomenon that has developed over the past five decades: a funneling of medical resources away from those who need them. According to the Centers for Disease Control and Prevention, the ten current leading causes of death, in order, are heart disease, cancer, lung disease, stroke, accidents (unintended injuries), Alzheimer’s, diabetes, kidney disease, influenza and pneumonia, and suicide. Because the American population’s average age is rapidly rising, health-care resources are increasingly spent to stanch successive ailments that come with old age. In 2009, the number of those sixty-five and older was 39.6 million; by 2030, that number will double to 72.1 million. Suicide and accidents aside, death is increasingly becoming a series of treatments, therapies, drug courses, and experimental trials that address— or prolong— the remaining illnesses. Americans may now live three decades longer than they did at the turn of the nineteenth century (an average that accounts for the decrease in childhood deaths and deaths from curable, basic infections and disease), but many of those extra years are not the golden retirement we expect.
What all these numbers add up to financially is a looming economic catastrophe: in 2010, Americans spent nearly $ 2.6 trillion on health care, more than 17 percent of the US gross domestic product. And twice what was spent in 2000. Half that total was spent on just 5 percent of Americans; about one-third of Medicare dollars goes to the last year of life. [ibid, pp 51-52]"Many of those years are not the golden retirement we expect." Yeah. My radiation oncologist told me last November during my first post-rad tx follow-up "I can say with confidence, you're not gonna die from prostate cancer. You've got another good 20 years."
Well, my late Dad died in 2008 at 92, my late Mom in 2011, just shy of 90. Her sister Edna died last year at 91, so, I guess we have some "longevity" genomics. I am now 70.
But, the quality of the last decade of each of their lives gives me pause. "Good 20 years?" My Dad went down in cardiac arrest the day after 9/11 ("Ma, there are no flights going anywhere right now..."). EMTs could find no DNR (he had one; I later found it in a drawer), so they paddled him back. Three weeks later he went from the acute care hospital to long-term care, where he languished in increasing dementia-addled befuddlement until he finally died of "end-stage debility" in May of 2008.
Tired of endless Delta red-eye flights to Melbourne every time the phone rang, I moved them both from Florida to Vegas in 2007. Ma lasted all of 10 days in "assisted living" before falling and winding up in a nursing home, (for which I cut checks totaling about 300 Grand, LOL).
I also reflect on my late daughter Sissy, who one day in June of 1998 just decided "enough of this shit," refused any more chemo, and resolutely died three weeks later.
A lot to think about in the wake of reading "The Good Death." Get it and study it closely. I'm on my second pass through it right now.
As noted at the outset, I put up an ancillary companion post on this topic over at the Medium platform.
At this point I've finished closely reading "The Good Death" three times. apropos, a new post at THCB.
The American Medical Association Goes Wobbly on Physician-Assisted SuicideI forwarded this post on to Ann.
By RONALD PIES, MD
Physician-assisted suicide. Physician-assisted dying. Physician Aid in Dying. All these terms have been used to describe a terminally ill patient’s use of a lethal, prescribed medication. Sometimes the medication is used to end the patient’s life; sometimes, it is held “in reserve” to provide a sense of control over the timing of death. Historically, the American Medical Association has stood squarely against physician-assisted suicide (PAS). But recently, in approving “Resolution 015”, the organization has resolved to study the issue of “aid in dying”, with an eye toward reconsidering the AMA’s longstanding policy. As a medical ethicist, I find this resolution deeply troubling...
On "life" more broadly,
"TWO CHEERS FOR UNCERTAINTY"
That (love it) comes from Hastie and Dawes' "Rational Choice in an Uncertain World." Basically, the riff is that if you knew everything, including the date/time and details of your own death, there would really be no point in living. A seemingly intrinsic part of being alive and sentient (at least for homo sapiens) goes to the motivating spice of uncertainty.
omics" and, most recently, subatomic physics. Below, four of my recent favorites.
Dr. Sean Carroll:
Right now we have a certain theory of particles and forces, the Core Theory, that seems indisputably accurate within a very wide domain of applicability. It includes everything going on within you, and me, and everything you see around you right this minute. And it will continue to be accurate. A thousand or a million years from now, whatever amazing discoveries science will have made, our descendants are not going to be saying “Ha-ha, those silly twenty-first-century scientists, believing in ‘neutrons’ and ‘electromagnetism.’” Hopefully by then we will have better, deeper concepts, but the concepts we’re using now will still be legitimate in the appropriate domain.Yeah. I ascribe to the late Stephen Jay Gould's "Drunkard's Walk Theory of Evolution." We seem to be the progeny of a multi-billion year Random Walk begun by microbes. With a hat tip to Occam and his Razor, you need only assume three things we know to be true: organic polymer arrays (DNA) comprising simple, replicating cellular organisms (driven by the basic contending forces of physics), a stable, low-entropy local host environment (wherein those forces operate), and a lot of time. One need impute no "intent" nor "purpose" beyond the low-entropy state biomechanical drive to reproduce at a cellular level.
And those concepts—the tenets of the Core Theory, and the framework of quantum field theory on which it is based—are enough to tell us that there are no psychic powers.
Many people still believe in psychic phenomena, but they are for the most part dismissed in respectable circles of thought. The same basic story holds for other tendencies we sometimes have to appeal to extraphysical aspects of what it means to be human. The position of Venus in the sky on the day you were born does not affect your future romantic prospects. Consciousness emerges from the collective behavior of particles and forces, rather than being an intrinsic feature of the world. And there is no immaterial soul that could possibly survive the body. When we die, that’s the end of us.
We are part of the world. Comprehending how the world works, and what constraints that puts on who we are, is an important part of understanding how we fit into the big picture.
Carroll, Sean (2016-05-10). The Big Picture: On the Origins of Life, Meaning, and the Universe Itself (pp. 149-150). Penguin Publishing Group. Kindle Edition.
Pop the clutch on the experiment and you may end up with the likes of the way cool Ann Neumann, and BobbyG blogging about her.
This time. Queue it all back up and tee off another trial, you probably get entirely different stuff.
It's likely way too late to schedule this, but I think Ann Neumann would be a perfect guest presenter for my friend Alexandra Drane's yearly Health 2.0 Conference "Unmentionables" panel. I've reached out to Anne's publicity scheduler at Beacon Press with the idea. Health 2.0 again approved my press pass, and I've made my reservation with the Hyatt at the conference site, so I will certainly be there. No cancer tx distraction this year.
I sent Ann Neumann a link to an article about a religious discrimination case I ran across involving transgender medical coverage rights. She replied, providing me an ACLU link, "END THE USE OF RELIGION TO DISCRIMINATE."
"FAIR USE" NOTE
After a post of this length, in which I again post extended excerpts from various authors, I suppose it's worth noting again my take on "Fair Use."  I don't do any of this for profit (or any compensation);  my excerpts comprise no more in bulk than a typical Amazon.com "Look Inside" preview sample;  I always provide publishing/purchase links, so that  far from possibly negatively impacting an author's/publisher's economic interest, my cites are likely to help contribute to their sales.
As my regular readers have long known, I prefer to let the authors speak for themselves rather than citing perhaps a sentence or two (if any) here and there and giving my interpretation of the writers' intent (the conventional approach). I am not a preacher. My readers are smart enough to make up their own minds regarding extended contextually excerpted original content.
More to come...