From a wheelchair, Bob DeVey watches his backyard garden, lush and vivid in its mid-summer’s display. There is something about the hot sun, the birds, and the flowers that so quickly bloom and brown that fit this season of dying.
His wife, Mary, hangs up the phone in their kitchen and strolls over with a small piece of paper. On it, she has written an offer from someone interested in buying their camper van, for sale now that cancer is repossessing their retirement dreams.
They’d barely had it for three years but already traveled to Shenandoah National Park in Virginia, the Adirondack Mountains in New York, the Susquehanna River ...
“No more,” Bob says.
Seven months ago, a doctor gave him “months, not years” to live.
Since then, his world has shrunk to the size of their brick house in Georgetown’s DeBordieu Colony community, except for once a week when he shuffles his pole-thin legs, with the help of a walker, to their golf cart. Mary drives to a nearby restaurant where they drink a beer and hang out with friends.
This for a man who lived to go. At 16, Bob hitchhiked up the Eastern seaboard after getting angry at his father. At 22, he rode his motorcycle cross-country after watching the movie “Easy Rider.” He raised three active kids and built a 40-year career handling multimillion-dollar health care companies’ finances.
Now, his greatest fear is the further shrinking of his world: becoming immobile, incontinent, unable to read a book or converse, dependent on Mary for everything.
A “jail cell,” he calls it. He is 70, barely retired.
Given that he will certainly die, Bob has opted against more medical treatments that will only cause him more suffering at the gain of, perhaps, a few months. He also wants to make what he considers his final medical decision:
Bob wants to choose when, and how, he dies.
“I just want a peaceful and loving end with my kids, but I don’t see how I can control that.” Physician-assisted death is illegal here in South Carolina.
To this, Bob’s voice quivers. His children are grown and live in other states. Two have small children of their own. The likelihood they will be with him when he dies is small.
He turns to Mary, a retired intensive care nurse.
“Why can’t I get a prescription from the doc?”
She doesn’t respond because they have had this conversation many times, since long before Bob was dying. They are acutely familiar with death in America.
Bob turns back to the garden and imagines the peaceful death of his choosing. Mary and their three children — the Original Five, as they call themselves — would surround him on their patio couch. They would trade stories, hug and say “I love you.”
“I want something more than, ‘Hey kids, Dad died this morning.’ ”
Tears well in his eyes.
“What’s wrong with that?”
Role as healer
Bob faces his own death in one house in one small city while an aging America wrestles with the question of whether a doctor ought to be able to help terminally ill people end their lives.
Just five days before that summer day when Bob asked his wife this question, an appellate court in California allowed the state’s End of Life Option Act to go into effect while a lawsuit traverses the courts. With that, physician-assisted suicide became legal in six states — California, Oregon, Colorado, Washington, Montana and Vermont — plus the District of Columbia. A growing list.
Four days earlier, the American Medical Association took up the issue after its ethics council spent two years mulling a more neutral stance. After vigorous debate, delegates at their annual meeting in Chicago opted for more study, leaving in place guidance adopted a quarter-century ago that warns:
“Physician-assisted suicide is fundamentally incompatible with the physician’s role as healer, would be difficult or impossible to control, and would pose serious societal risks.”
They then sent the question back for more study.
Gallup also released its latest poll asking Americans if doctors should be allowed to end terminally ill people’s lives through painless means if patients want to do so.
Three in four Americans said yes.
George Eighmey, an attorney and former Oregon lawmaker, is president of Death with Dignity, a Portland-based nonprofit that is a major force behind the spread of legalized physician-assisted dying. He has sat at the bedside of more than 40 dying people as they drank the 4 ounces of medication that ended their lives — a scenario Bob imagines for himself.
“These people are among the bravest, strongest people I have met,” Eighmey says.
Some included last rites and other religious ceremonies in their final moments. Others sang with loved ones. Many shared memories, embraced, said goodbyes.
“It was just beautiful.”
The next states where Eighmey sees legalization most likely: Maine, New Mexico and Nevada. Almost half of state legislatures will deal with physician-assisted suicide this year.
What about South Carolina, which banned the practice in 1998?
Eighmey laughs out loud.
“The likelihood of getting in states like North Carolina, South Carolina and Georgia is unlikely at this time because of very, very stiff opposition both politically and religiously.”
Catholics, Mormons and evangelical Christians in particular “pour millions and millions of dollars into opposing the laws,” he adds.
Indeed, as a moral theologian for the Catholic bishop of South Carolina, Father Jeff Kirby often gets questions about the church’s position. It’s one thing, he explains, to opt against receiving medical care. That is a passive act. It’s another to ask a doctor to take the active step of prescribing drugs so a person can end a life.
Or, think of it another way: Medical care is OK where it facilitates nature. But when it supplants or violates nature, Kirby says, it isn’t.
Then there’s the good Samaritan principle, key to the Christian faith but also a broader moral imperative to extend kindness to others in one’s community.
“We see human life as not belonging to ourselves. I belong to God but also to my community,” he explains. “We define so much of our lives in terms of autonomy. I’m suffering. I don’t want to suffer. But the reality is, it’s not just about you.”
Huge and controversial decisions such as choosing to end a life, even with its end imminent, affect entire communities.
“My response is to encourage Bob to see the dignity of his own life in the midst of his suffering and that his suffering has certain power to bring out the humanity in those around him,” Kirby says.
Bob, a lapsed Episcopalian, and his wife, a lapsed Catholic, come at it from the opposite view. They see dignity and humanity in the choice he wants to make.
“Why should your God dictate to me what I do?” Bob asks. “I respect what you do. I respect your religion. Good Lord, I was brought up in your religion.”
Garden of Eden
Inside Bob’s home, which sits on a cul-de-sac, two red kayaks hang in the garage gathering dust and pollen. So do myriad bicycles and fishing poles. His boat is gone. So is his motorcycle and the camper van.
He used to love heading out with any of these vehicles of freedom. He’d park near a creek to fish, read a book or smoke a cigar and contemplate the universe.
At 10:08 a.m. on a mid-June day, Mary wakes him up. She helps him from bed, then onto a shower seat. A thin man with reddish hair, Bob emerges in his wheelchair wearing blue athletic shorts and a T-shirt that reads “Alaska: the last frontier.”
His hazel eyes are brightest in these hours, from late morning to mid-afternoon. He wheels into their kitchen, then switches to his walker. Standing at a counter, he lowers himself into a squat, despite the pain that radiates from the base of his spine. His long legs look like spindles that could snap.
After his exercises and breakfast, he heads into his sunny office with a wooden roll-top desk from England and a large Macintosh computer screen, no clutter.
Bob pulls up a to-do list of dying. Everyone should have one, he says. He found his online. It’s a page full of the mundane necessities of dying: Change property titles. Apply for benefits. Contact an attorney. File for probate of will.
This is his comfort zone, the realm of spreadsheets and forecasts, though he cannot plan for the most critical questions about dying: when, where and how.
Around 1 p.m., he wheels to their back porch, shaded with a wide overhang, and lowers himself onto the couch. Heat wraps him in comfort. Mary brings his walker so he can make it to the restroom if needed. It’s one of his most immediate fears, the social embarrassment of losing control of his bladder or bowels.
Bob isn’t a religious man, but he sits in an Eden-like place.
A hummingbird hovers at a coral hibiscus bloom. Trees provide privacy and shade. Lying back on the soft pillows, he rolls toward the garden, then lowers his eyelids like shutters to the day.
This is how he likes his life now. And where he’d like to end it.
Months, not years
Bob began his life in a small blue-collar town in upstate New York where, the summer after graduating high school, he got about the only job available.
At 18, he walked into an asbestos factory.
“It was a scumbag factory — the old turn-of-the-century, dirty, abuse-your-worker, union-led, hard-nosed factory,” he says. “But you know, upstate New York was at the time deteriorating. There were no jobs, and I wanted to go to school. So that is what I got.”
He returned briefly to the factory after graduating from college with an accounting degree. Although he wore a tie and toiled in an office, particles still floated in the air.
The factory, owned by Garlock Sealing Technologies, has since gone bankrupt. He once read that it became the most sued company in the world, given the connection between asbestos exposure and mesothelioma, a deadly cancer that infests the lungs.
Yet Bob read studies that found workers exposed to asbestos who remained free of mesothelioma after 50 years likely had surpassed the big window of risk. Bob rounded that at age 67.
At 69, he went to his doctor for worsening back pain. It started shortly after he went on a 350-mile bike ride with his older brother.
A pulmonologist at the Medical University of South Carolina sent Bob for a scan. It was a Friday, late afternoon, and the doctor stayed until the MRI was read. Given Bob and Mary worked in health care, they knew what that meant.
When the man returned, he put his arm around Bob, then showed him white areas on his scan.
“These plaques are indicative of mesothelioma.”
Bob had watched his dad, a car salesman with an eighth-grade education, die gasping for air in a hospital bed in their living room. Would that be his fate, too?
A thoracic surgeon offered an option. He could perform a complex surgery that involves slicing off the membrane that covers Bob’s lung, and, if needed, remove his diaphragm, too.
“If you don’t do it, you’ll have months — not years — to live.”
Six to nine months, specifically.
“So I go through this, you take out all these body parts, throw ‘em away, and how much extra time do you think I’ll have?”
“Three to six months.”
Bob calculated. Surgery, two weeks of inpatient recovery, a month in a rehab hospital. More recovery at home. Four months altogether.
“No,” he said, “I’m not doing it.”
'You'll wind up paralyzed'
Instead, Bob’s doctor referred him to a promising drug trial at MUSC, a life raft of hope. One of the possible side effects, however, was numbness or weakness.
After the first treatment, Bob’s legs felt numb. It got so bad he could barely get around. He arrived for his second treatment using a friend’s walker. A physician dispatched him for an MRI.
It was November 2017. Bob and Mary stood in MUSC’s emergency department, packed at the height of that winter’s severe flu season. The clocked ticked to 6 p.m. when the chief of neurosurgery arrived to inform them: Mesothelioma wasn’t causing his back pain. A radiologist had found a large tumor on Bob’s spinal cord.
Cancer No. 2, a new one.
“If you don’t go to surgery tonight, you’ll wind up paralyzed by next week.”
Bob went to surgery. When he awoke, he couldn’t move his legs. After a month in a rehab hospital, he regained limited use of them and found out he’d been booted from the clinical trial for the mesothelioma drug because his second cancer would pollute the study results.
Through the depression that set in, Bob tried to think rationally. He devised a strategic plan for dying. But was physician-assisted suicide even accessible to him?
He studied the rules in each state where it’s legal and even considered a trip to Switzerland. But he’d have to travel with his weakening legs and worsening pain. Wherever he went, he’d have to lug his medical equipment.
And live far away from home for a while to prove residency.
And find a doctor willing to prescribe the drugs.
Before all that could happen, he’d probably run out of time anyway. Then he’d have wasted his final months of life only to die in some strange place, not at home, not in his garden, not on his terms, and wasn’t that the point of all this anyway?
Respite of normalcy
After weeks of planning, Bob’s close friend Larry Reimer zips into the driveway in a golf cart. Three long surf fishing poles stick out the back.
A tan and athletic man around Bob’s age, Larry has also brought live fiddler crabs and shrimp for bait. Beach chairs. Two 5-gallon ACE buckets. Bob heaves himself from his wheelchair to the passenger seat, determined to do it without help.
One golf cart. Two regular Joes. Three fishing poles.
Larry bumps along the sandy beach access path until they crest the dune. The vast Atlantic Ocean suddenly greets Bob who grins like he’s just caught the biggest fish of his life.
Along the dry high sand, they cruise past clumps of beachgoers and head toward an empty spot.
“This look good?” Larry asks.
Bob slips out of his seat and stands, balancing for a moment with the walker Larry brought him. Can he make it to the wet sand down by the waves?
He sets the walker down a step ahead, then lifts one toothpick leg to step over the uneven sand. With Larry hovering alongside, Bob repeats.
After about 30 feet, Bob’s legs quiver. His face reddens. Sweat beads.
When Larry retrieves his camping chair, Bob plunks down, exhaling with exhaustion. He made it.
Bob stares at the ocean as Larry baits their hooks with fiddler crabs. The wind, the azure expanse, the tall rods all whisper memories of days when he worked hard and imagined a retirement filled with travel and fishing. Now, all that will end so soon.
“I could just sit out here and soak up the sun,” he says. “Fishing at its best. You have no idea how good this feels.”
Larry takes a selfie of them, of this moment. Bob tears up.
“I know I won’t be here fishing with you, Larry, in a year.”
“We’ll be here next week, so let’s not worry about that.”
They sit in comfortable silence facing the outgoing tide, knowing they won’t catch anything. Bob closes his eyes and smiles at the sky.
The close of season
A month later, butterflies bounce between lantana blooms down the DeVeys’ front walkway. Inside, Bob is, as he puts it: “fading.”
He sleeps 14 or 15 hours a day, plus a nap or two. A pressure sore is forming on his right side from lying for too many hours on his bony hip. His thoughts often meander down creeks of confusion.
The other day, determined to prove he could still take a few steps with his walker, Bob instead began to fall. Mary guided him to the floor. But she is a petite woman, and Bob a tall man. She couldn’t lift him back into his wheelchair.
For help, she called up to the DeBordieu community’s guard house. A security officer came and hoisted Bob back up.
His "jail cell" constricted a lot that day.
Mary thinks the tumor on his spine is growing, but they aren’t seeing a doctor to check, given Bob’s in hospice, preparing for the end.
One day a week remains his highlight. In their golf cart, they escape to the development’s beachfront restaurant for dinner and a beer with friends. On a quiet weekday in late August, Mary takes him, pushing him in his wheelchair down a path lined with palm trees, toward a grey clapboard building.
He eyes a cabana to their left, a favorite hang out. A short set of stairs leads up to it.
Mary spots his gaze.
“I don’t know if you could do those steps.”
They pass it. Ahead, the restaurant sits empty. Only an old Fleetwood Mac song greets them.
"Can I sail through the changing ocean tides?
Can I handle the seasons of my life?"
Mary parks him at a picnic table, then shoves open a blue umbrella to shield Bob’s pale skin from the sun.
Over shrimp tacos, they talk about their children who have come and gone several times recently. Close friends have visited from other states. Sometimes Bob feels like he is living a funereal wake with so many people coming to offer goodbyes, not knowing which are the very final ones.
Given how often his children visit, he clings to hope that one will be with him when he dies. But that feels so selfish. He doesn’t want them to see him suffer. What he really wants is for them to be there when he dies peacefully, and his biggest fear is that his death will be anything but peaceful.
He picks at his food and begins grading his life. He was a decent husband and father, he figures, a good provider. He worked hard but wishes he hadn’t watched every penny quite so much.
He gives himself a B+. Mary laughs.
“You always have to measure things.”
When they head out, Bob turns quiet. The warm air is spritzed with coolness, and the streets of DeBordieu stretch silent and tranquil.
“You definitely can tell summer’s almost over,” Mary says.
From summer to fall
As October arrives, their garden quiets for autumn. Bob’s skin has thinned to gossamer, marred by small cuts, his legs atrophied, belly swollen.
“It’s coming soon,” he says.
He and Mary are sitting in their living room, as usual during the few hours Bob is awake. Yesterday, she roused him at 2:30 p.m. because the hospice nurse was coming. The other day he simply couldn’t get up.
And then there’s the worsening pain in his buttocks and hip. Mary could increase his medications, but then he would essentially become bedbound, the limitation he most dreads.
“I’ve always told him he’s a pain in my butt.” Mary tries to laugh.
Bob doesn’t. Tears redden his eyes. Mary has provided his one-on-one care for eight months, 24 hours a day.
“It was my profession,” she assures. “And you sleep a lot.”
His face scrunches up, and he moves his fingers to his eyes.
“You’re an easy patient, dear,” she assures.
More softly, she adds, “It helps when you love somebody.”
“I sure hope so.”
The doctor gave him six to nine months. Bob has lived 11.
When Mary mentions needing to pick up his prescriptions, he offers to drive his truck to the drive-thru.
“Bob, you haven’t driven since last fall.”
He suggests they summon their children, one last time.
The Original Five
All three arrive over the first weekend in October, expecting profound conversations about death and life. But when Bob is awake, that isn’t what he talks about.
He goes over his will, who will get what, stuff they mostly already knew. They figure he’d rather discuss things he can plan for and control. Or perhaps, given his love of numbers, he sticks to topics he can still speak about somewhat intelligently.
Or perhaps saying goodbye is just too hard.
But then Monday comes, the start of a new week that beckons them back to their homes, their jobs and families in Michigan and Georgia.
Bob is awake on the porch, perched in his wheelchair, wrapped in afternoon heat, trying to endure the pain in his lower back and hip. Mary sits on the couch to his left, squeezed in with Matt and Kate. Their youngest, Dan, sits in a patio chair across from him.
The Original Five.
Someone brings up favorite old movies from the 1980s. Then favorite restaurants. Then camping trips.
“When we got out of high school,” Bob says, “we went cross-country, and for three months all I had was an air mattress — no stove, no lantern.”
His voice is hushed and raspy, like someone about to sink into a deep slumber. But he smiles. Bob loved NASCAR, loved camping at the Daytona 500.
“That was an experience!”
“That must have been a wild one. On the infield?” Matt says.
Dan imitates the race announcers, and laughter fills the porch.
Then it lulls, as if they realize in unison that within minutes they must say goodbye.
Bob turns quiet. How do you say forever goodbyes to your children? If he could have chosen a peaceful death, it would be now.
Instead, Matt suddenly rises from the couch, stretching.
“I’m going to get my stuff packed up. It’s about 3 o’clock.”
His flight out of Myrtle Beach is at 5.
Mary’s phone alarm rings. She too hops up.
Bob’s eyes fill with tears.
Within minutes, Matt returns and stands before his father. Kate hovers beside him, arms wrapped around herself, scowling, eyes damp. Dan hovers off to the side.
“Next steps,” Bob says through a veil of tears. “You know the next steps ...”
After his children leave, he will increase his pain medication substantially to help him endure, which also will leave him muddled and bedridden until he dies.
Matt looks into his father’s eyes and takes a mental snapshot of what he sees there. Love. Life. Humor. He leans over and wraps his father in his arms.
“I love you.”
Bob chokes out, “I love you.”
Kate hugs him next. Then she and Matt dart into the house to leave before they lose it.
Dan hangs back. He heads out a little later.
In the empty space left behind, Bob asks Mary how long the doctor gave him to live. Six to nine months, she reminds him.
“It’s been 12.”
“Not quite. It won’t be 12 until the end of November.” It’s October 8.
“It’s getting up there, and I’m getting weaker.” Frustration twinges his words. “My muscles and ...”
Mary helps him pivot onto the couch, then eases his legs up onto its soft cushions. He grimaces.
She brings him the house phone and his book. He doesn’t read it, though. Instead, he begins to sob.
The day after Matt and Kate leave, the nation’s family practice doctors do something dramatic in the physician-assisted suicide debate: They break stride with the American Medical Association.
Delegates at the American Academy of Family Practice Physicians, the AMA’s second-largest subgroup, strikes a new position of “engaged neutrality" instead of a stance of outright opposition.
They also reject the term "physician-assisted suicide,” preferring to describe it as “medical aid in dying.”
By now, six months have passed since AMA delegates sent its ethics council back to studying the issue. Their work continues as Bob’s world constricts around him.
The cell door
The next Saturday morning, Mary hears him calling for her in distress. She rushes to the bedroom and finds him in tears.
He has lost control of his bowels.
As she cleans him up, he says he wants to die. He hates being helpless, hates being a burden, hates the pain and embarrassment.
“It doesn't bother me,” Mary insists. “I’m a nurse!”
“I want to die with dignity,” he groans. “And there’s nothing dignified about this.”
It happens again, later that day.
He would die then, if he could choose. He would call their children back and die there, on his porch, with them, with Mary, with his dignity and faculties about him enough to say goodbye.
On Monday, it all happens again.
“It breaks my heart,” Mary says out of his earshot. “It’s doesn’t even feel like it’s my husband.”
Bob just wants to be asleep at this point. Which, to him, means as dead as the law will allow. He decides to begin a process of “palliative sedation,” which uses medication to reduce awareness in the face of extreme suffering at the end of life.
On Tuesday, his hospice nurse helps them make a plan.
First, Bob will need a hospital bed. It arrives on Wednesday, reminding him of his father’s death, gasping for air, and all that Bob doesn’t want for himself.
He sleeps well on it, though, and starts increasing his pain drugs the next day.
On Friday, Bob’s oxygen saturation drops to 84, the lowest yet. His toes start crossing, and he can’t work his legs. When he moves, Mary hears his bones grinding.
On Sunday afternoon, she will increase his pain medications again.
Just before noon, she enters the guest bedroom and walks to the hospital bed where he slumbers. Beyond two windows, sunshine drapes their back porch and garden.
Once he’s awake, she eases his legs to the ground and helps him pivot to a white bedside commode.
Sitting there, his breaths become short.
His skin turns pasty. Sweats glistens. He gasps for air. Worried, Mary heaves him back into bed, then raises the head of it. The wife Mary becomes ICU nurse Mary, quickly squirting half of his maximum dose of morphine under his tongue, hoping it will calm him enough to improve his breathing.
He looks at her. She sees terror.
“Is this what it’s going to be like?” he says.
She speaks in soothing tones as he struggles, knowing the more worked up he gets the more difficult it will be to breathe.
“Am I dying?”
“You’ve been dying for the past year,” she says, then gives him the other half of his morphine, plus anxiety medication.
He writhes in bed. He gasps, the fish out of water. Mary strokes his forehead, clammy and cold. Minutes pass. Until his breaths weaken.
Mary has watched people die before. But never her husband.
“It’s okay,” she tells him.
Bob finally stills. Almost 15 minutes have passed. Mary reaches for her stethoscope, sitting on a dresser beside him, and listens for a heartbeat. She feels his neck for a pulse. But his mouth hangs open, eyes rolled back.
In hospice, there is no calling 911, no dramatic flurry after death. Mary walks out of the bedroom and calls the hospice nurse. Her voice quivers, her own breaths clipped.
She explains she is pretty sure that Bob is dead in the other room.
Instinctively, she returns to clean him up, to preserve his dignity before anyone arrives. Then she walks out and stands in their living room. The house sits silent.
She dials their son Matt, who is 800 miles away near Detroit.
“Dad just passed away.”
In November, three weeks after Bob died, doctors from around the country again clash ferociously over the right that Bob so desperately wanted. Debate at the AMA’s interim meeting becomes so heated one observer worries it “could split the association.”
Ultimately, they leave the ethics code in place. Physician-assisted suicide remains “fundamentally incompatible with the physician’s role as healer.”
They also send the matter back for more talks, setting up for another battle this summer at their annual meeting.
Meanwhile, with the dawn of 2019, Hawaii becomes the seventh state where physician-assisted suicide is legal. Almost 20 percent of Americans now can access the option at the end of their lives.
Contact Jennifer Hawes at 843-937-5563. Follow her on Twitter @jenberryhawes.