In telling his story, Lindner reveals the thoughts, fears, and lessons of those living the ends of their lives in the care of others, having exhausted their medical options or ceased treatment for their illnesses. In each chapter, Lindner not only reveals the lessons of lives explored in their final days, but zeroes in on how working for hospice can be incredibly fulfilling.
As he’s not a doctor, nurse, or professional social worker, just a volunteer lending a hand, offering a respite for other care providers, his charges often reveal more, and in more detail, to him than they do to those with whom they spend the majority of their time. They impart what they feel are life lessons as they reflect on their own lives and the prospect of their last days.
Lindner captures it all in his lively storytelling. Anyone who knows or loves someone working through end of life issues, living in hospice or other end of life facilities, or dealing with terminal or chronic illnesses, will find in these pages the wisdom of those who are working through their own end of life issues, tackling life’s big questions, and boiling them down into lessons for anyone as they age or face illness. And those who may feel compelled to volunteer to serve as companions will find motivation, inspiration, and encouragement. Rather than sink under the weight of depression, pity, or sorrow, Lindner celebrates the lives of those who choose to live even as they die.
|Publisher:||Rowman & Littlefield Publishers, Inc.|
|Product dimensions:||6.00(w) x 8.90(h) x 0.70(d)|
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Lessons for Living at the End of Life
By Eric Lindner
ROWMAN & LITTLEFIELD PUBLISHERS, INC.Copyright © 2013 Rowman & Littlefield Publishers, Inc.
All rights reserved.
AN APTLY NAMED CAREGIVER
Joy LeBaron seems really nice but distracted. "I'd love to have another volunteer ... Eric—did you say your name was?" The executive director of Hospice Support of Fauquier County (Virginia), Inc., is a slight woman. She looks about five to ten years younger than me, so in her early to mid-forties. She also looks unpretentious: her ensemble of slacks, blouse, and cable-knit sweater is loose fitting; her short hair, simply cut, is a wavy, bang-heavy lattice of several shades of blonde. Though she clearly appreciates my walking in off the street in February 2009, its not being on her to-do list is mildly disruptive; if, that is, it's possible to disrupt the disruption that governs Joy's feng shui. Her small office is crammed with collapsed walkers and wheelchairs, stands of green oxygen tanks, a cluttered conference table, an overflowing bookcase. It smells musty. The coffee at the base of the pot looks carbonized. The phone rings a lot, kicking over to voicemail. "I've currently got twenty patients. I could add another twenty by the end of the day—if I had more volunteers. I can't give my patients anywhere near the hours they want."
According to the National Hospice and Palliative Care Organization (NHPCO), her overburdened not-for-profit is one of 5,300 in the United States—quite a rate of growth, considering America's first hospice didn't open until 1974, in New Haven, Connecticut (in association with Yale University). Circa 2013, more than half the world's hospices are located in the United States.
Joy's an expert in "palliative care," of which hospice is the best-known paradigm. Such care is all about comforting, not curing. Of those who die every year in the United States, nearly one in two are served by hospice. Moreover, as patients—and their loved ones—generally rate their experiences very favorably, and the per diem hospice cost is but a tiny fraction of the per diem hospital cost, hospice is a very bright component in the oft-maligned U.S. healthcare system. One reason hospice is so efficient has to do with the role played by volunteers, nearly 500,000 of whom serve 1,650,000 terminally ill patients, annually. At many hospices, the volunteers outnumber the paid professionals.
"Okay, then. So I've come to the right place. Throw me into the hopper."
Suddenly I'm not there, as Joy's hand shoots to her mouth, and she spins around. "Hhh! Where'd I put that? ..." But then she remembers me. "Sorry ..."
"I'm sorry. I should have called first."
"No, no. I'm glad you stopped in. It's just that ... you need orientation, and training."
"Fair enough. When's your next session?"
"See, that's just it. We're so small, we've not got anything lined up right now. We're strapped for funds. The financial crisis dried up our donor base. But," she adds, "I'll e-mail Rosalie Palermo at Haymarket Hospice. They're much bigger. Unlike us, they get funds from Medicare as well as from Virginia, Maryland, and the District of Columbia. Rosalie has new volunteer sessions all the time. She has to."
"Where are they based?"
Her head cants, she smiles. "Haymarket."
"Gosh, what a dumb question. 'Course."
"They've got maybe a thousand volunteers! Plus a paid professional staff of seven hundred or so."
"That does sound big."
"Once you're trained in Haymarket, you'd be on my roster, too. We often share patients."
Joy follows through on her promise, and I exchange e-mails with Rosalie. Haymarket Hospice does hold regular orientation and training sessions; however, I'm often out of town.
Still, I fill out some forms and coax some friends into submitting reference letters. (Asked to attest that I'm no psychopath, several hesitate.) Meanwhile, Rosalie puts me in touch with existing caregivers, both volunteers and paid professionals. "We find it often helps," she says, "to hear why others are doing it and how reality does—and/or doesn't—differ from what they felt might be the case coming in." I reach out to her referrals, and learn a lot.
6:23 p.m. My first orientation session is well under way in a converted antebellum Virginia office building of fieldstone, brick, milk-painted plaster, and lovely heart-of-pine, where, 148 Junes prior, a then-unknown lemon-sucking fanatical Presbyterian preacher named Thomas Jackson was en route to rescue Confederate general P. G. T. Beauregard at First Bull Run—earning his nickname in the process: Stonewall. I can't figure out how to buzz myself in using the after-hours intercom contraption. After several frustrating minutes, Rosalie rescues me.
Trapped within the vestibule, I hear the elevator ding. She flies out and charges over, the rush of air billowing her purple blouse. "I hope this isn't a test," I say. "It is," says she. "But I grade on a curve!" "Sorry I'm late," I add. "No worries!" she responds. We swap smiles and shake hands, which rattles and clanks her chunky silver necklace, hoop earrings, and bracelets. Black bell-bottomed pants and pink ballet-flat shoes complete a sort of happy hippy ensemble.
We head down into the cool basement, where I join three other prospective volunteers around a big, gleaming table. We wave, say hi to each other. Clockwise from my right, there's a thin, fidgety, frail-looking man whom I'd guess to be in his early thirties, in baggy grass-stained jodhpurs, an older, smiling señora in a floral blouse, and a dapper gentleman in natty herringbone, who I'm told once ran with Dean Martin and other members of The Rat Pack. The coffee smells good, and the cookies look tempting. The softly playing New Age music is soothing, but, as the bright overhead lights aren't, I tug my cap low over my brow, shielding my sensitive eyes.
While we recruits sign in, settle in, sip, and nosh, Rosalie remains standing at the end of the table. "There may be one or two more stragglers, but I think this is probably it."
Rosalie's smile dominates her personality. Though expansive and expressive, it can't contain—or communicate—the full extent of her ebullience, even when abetted by her halogen hazel eyes. In toto, it's the pardoning countenance of a Been There, Done That woman, of a mother of two boys, one girl, and the ex-wife of a man who skipped town just after she'd delivered his son. Her naturally curly auburn hair is now crazily spirally so, as a result of chemo. In a Boston accent she says, "Please raise your hand if, during the past year, you've either experienced the loss of a loved one or you're currently caring for someone who's terminally ill."
All hands go up except mine, sending a few glances my way. Like Rosalie, whose mother received hospice care until her death in 2002, everyone else in the room, via brief summaries, explains how they've been positively touched by hospice and, thus, wants to "give forward."
But my motivations are atypical, and my path to this conference room is anything but linear. It follows decades of discursive dabbling, from a few weeks in a hospital burn unit to nine years on the board of a big university. All told, as a volunteer I've done some good and screwed some things up. At fifty, with my second of two kids having just shipped off to college, and my business on cruise control, the restlessness that's always bubbled beneath the surface of my life is no longer masked by the film of details attendant to earning a living and raising a family. But being restive isn't my only motivation. Most of my patients would be seniors, and I've always been attracted to "wise elders." My wife closes the sale. When I ask Ellen what she thinks of my spending ten hours a week providing companion care for a revolving door of terminal illness, she replies, "It's something not many people can do, but I do think you have what it takes and should give it a try."
The "why volunteer?" responses of my fellow trainees don't tell me much, but they're suggestive. Everyone seems a bit diffident and/or tired, like it's been a long day, illness, or both. Rosalie's referrals had shed more particulars on what I might be getting myself into.
My favorite motivational story is that of Gil Booker, Joy's assistant. Having been diagnosed with kidney cancer at age forty-three, Gil was two days away from surgery when his doctor suddenly called it off.
"Off??" Gil exclaims. "Why?"
The oncologist explained how, notwithstanding all the consistent and encouraging images of a shrinking kidney mass, out of nowhere, the latest scan showed robust bone cancer. "It's metastasized surprisingly fast." Pointing to bright spots in the skull, ribs, and elsewhere on the image, the oncologist explained that surgery—any type of remediation—was now, unfortunately, hopeless. Consequently, the doctor strongly advised Gil to forego the planned removal of the kidney mass and, instead, get his will in order, draft up a Bucket List, and wring out as much enjoyment as he can, "until it becomes too much." (Bone cancer is excruciatingly painful.)
Naturally, Gil was in shock. Naturally, once home, he and his wife hugged a lot, cried a lot. Less naturally, Gil ignored his oncologist and insisted on going ahead with the scheduled surgery. The result? In addition to successfully removing the kidney tumor, several bone biopsies reveal that there was in fact no bone cancer. "We can't explain it!" the oncologist exclaimed. "We don't know what those bright lights on the imaging were!" Gil's been a hospice volunteer ever since, for twenty-five years.
I'm thinking of Gil as Rosalie passes around a sign-in sheet, along with troves of information, a small pile for each prospect. It's hardly light reading, what with book, pamphlet, monograph, and one-page handout titles like "Good Mourning," "Infection Control," "Hazardous Materials–Management Program," "101 Things to Do with a Person Who Has Alzheimer's Disease," and, in the event of suspected patient abuse, "Confidential Occurrence Report."
"I know this is a lot of information," says Rosalie. "But please read it all, when you get a chance. The most important information is the list of Dos and Don'ts in that purple-bound book there, titled Student Manual.
"Dos," she explains, "like being dependable. Being genuine." Do listen. Do keep good boundaries, both physical and philosophical, such as religion. Do encourage a life review. Do be comfortable with quiet; "silence is okay." Do remember to care for yourself, and to communicate with the volunteer manager/hospice team, both in regular written reports and, if necessary, by telephone call, if something's in need of more urgent attention. Do remember that little things mean a lot; "what you give is immeasurable." Finally, as tragic and sickening as this sounds, by all means, do report signs of abuse.
"Meanwhile, on the flip side, don't visit your patient if you're ill." Don't play doctor or nurse, either by offering advice or dispensing any sort of medication. Don't judge; "especially don't try to referee a family squabble!" Don't break confidentiality. Don't give unsolicited advice; here again, religion often comes into play. Don't take on more patients than you can manage. Don't take it personally—whatever. "Don't expect your patient to conform to your standards/expectations." Don't interrupt when the patient is sharing. "And, last but not least, don't assume you know what their needs/feelings are."
"That's all?" says a prospect, voicing the reaction of us all.
Rosalie nods, and smiles. "I know. It's a lot. But, first, as to the reporting, we don't expect much. Just the basics, anything noteworthy. Nobody likes paperwork. More generally, it boils down to one thing, really: being compassionate. Compassion trumps everything. As those of you who've suffered through a loss—or who are now suffering—know, I'd wager. I am very sorry for what you've gone through, or are going through now. I hope I might, maybe, offer you some tools to ease your suffering.
"Thank you, all of you, for your willingness to volunteer. There's such an enormous need out there."
According to NHPCO, each year nearly five hundred thousand volunteers rack up a total of twenty million hours. This translates into less than an hour a week; most patients are looking for three to five hours, if not more. Haymarket Hospice boasts "nearly 1,500 patient contacts each and every day." However, thin volunteer ranks mean many such "patient contacts" are no more than five-minute phone calls. "I'm not complaining!" Rosalie is quick to note. "I understand, totally! We all have such busy lives ... our own bundle of existing commitments, obligations, and other priorities. But, still ..."
The volunteer shortage is tragic in two ways. First, about two-thirds of America's terminally ill die in hospitals or nursing homes, as opposed to in their own home (or the home of a loved one), where nearly nine in ten would prefer to die. Second, the last emotion hundreds of thousands of Americans experience is—loneliness. "Being lonely at the end of life is so sad, so tragic. I've heard it—loneliness—called the most desperate of all English words. And it's far worse in most other countries.
"But let's not dwell on a downer, right? Once we're through with our nine hours of orientation and training, and you're out in the field, I'm confident that, like almost all volunteers report, you're going to experience something truly special, a real win-win. In addition to helping others, and despite the unavoidable sadness, you'll be helping yourself, too, by discovering a sublime sense of fulfillment. I know it! I've every confidence you'll feel as I do: helping people at this stage of their lives feel less alone is a real privilege.
"Now ... a bit about me. I've been around the block!"
I'll say. By the sound of it, she's just about seen it all: miraculous recoveries, abrupt deaths; selfless doting by strangers, shocking abandonment by supposed loved ones; warm collegiality among hospice workers, stymying by higher-ups in a cold corporate bureaucracy. "I need to warn you," Rosalie cautions, "we've got nearly seven hundred paid staff and a thousand volunteers interacting with terminally ill patients more than a thousand times each day ..." She shakes her head. "At times, just the HIPAA requirements—"
She pauses, in response to several puzzled stares. "Sorry. HIPAA stands for the Health Insurance Portability and Accountability Act. It's a mouthful, I know. You'll be able to read all about it, in your packet."
"Oh," says the man in the grass-stained jodhpurs.
"What I was getting at is that, sometimes, wanting to be compassionate conflicts with needing to be legally compliant. Now, sometimes, I think the view from the front lines—from you guys—makes a lot more sense than what the armchair quarterbacks have to say, back in there." She wags her head toward the warren of offices beyond the recently tuck-pointed stone walls.
"But I don't want to blow things out of proportion, either. There are a lot of good people in executive management. And, like at most places, they often got there by working themselves up through the ranks. Many have far more experience than me. I've only been doing this for about a year, drawn by how much help it was to my mom, and me, during her last weeks, and months, in oh-two.
"I bring something else to the table, too. I'm a cancer survivor. I thought I'd bought the farm." Rosalie looks around, prompting several knowing nods.
"But, we'll all buy the farm, some day. As everyone from Buddha to Ben Franklin has remarked, we all have a terminal condition. It's called being human!
"We pretty much all begin the same, as a former midwife now on staff will tell you. It's more our endings that vary, like the seven hundred thousand Americans who die each year of heart disease versus the seventy thousand Alzheimer's claims. Hmm ..." An index finger taps her lower lip. "Ten hearts for every one mind. Fodder for a poet, if you ask me.
"So ... terminal illness, which seems such a concrete, finite, hard-edged term, is actually somewhat slippery. Though it depends on semantics, it really boils down to two things: First, that our time-related frame of reference shifts, from the flipping of calendar pages to the ticking of a stopwatch. Second, that our cause of death appears reasonably predictable. However, as you get some experience under your belts, you'll begin to see the wiggle room in both of these terms, too—reasonable and predictable. For instance, Medicare will only reimburse Haymarket Hospice if two conditions exist. First, the patient must have given up trying to seek a cure. Second, a doctor must say that the patient is not expected to last longer than six months.
"But I'll share with you two little hospice secrets. Treasures, really. First, we in hospice like to say that, between the curing of and caring for patients, there's plenty of room for healing—of human beings. Second, for every six patients that America's five thousand–plus hospices took in last year, one was discharged—alive!
Excerpted from HOSPICE VOICES by Eric Lindner. Copyright © 2013 Rowman & Littlefield Publishers, Inc.. Excerpted by permission of ROWMAN & LITTLEFIELD PUBLISHERS, INC..
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Table of ContentsAcknowledgements
1: An Aptly Named Caregiver
2: Find the Key That Unlocks Empathy
3: Adversity Crumbles When Laughed At
4: Ownership Isn’t All That it’s Cracked Up to Be
5: Talk Less, Communicate More
6: We’re Only as Sick as Our Secrets
7: Have Guns, Will Travel
8: Live Discharge
9: D's and DON’Ts